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Will Making

Will: This document expresses the desires of a person regarding the distribution of their property among specific individuals or parties after their demise.

Will: A will is a document created by an individual during their lifetime, wherein they state how their property and affairs should be handled after their death.

Will: A will is a written document produced by a person while they are alive, clearly instructing how their property should be managed or divided following their passing.

In Uganda, the law governing inheritance is outlined in the SUCCESSION ACT, Chapter 139 of the Laws of Uganda, as amended by Decree No. 22 of 1972.

This legislation covers the process of creating wills and the subsequent procedures following the death of a will-maker. It also addresses the distribution of property when a person passes away without leaving a will.

However, customary laws and practices often prevail over the legal provisions, leading to property distribution that may not adequately consider the welfare of widows, widowers, and children. Consequently, it is crucial for individuals to create a will during their lifetime to ensure that their property and assets are distributed according to their wishes.

Terms used in the Will

Administrator/Administratrix: A person authorized by a court of law to manage the property owned by the deceased.
Child: An individual under the age of 18, including both legitimate and illegitimate children.
Customary heir: A person designated by the deceased or the family clan members to succeed the deceased based on the customs of the deceased’s tribe.
Deceased: A person who has passed away.
Dependent relatives: These include a spouse, children under the age of 18, or children above 18 who were substantially dependent on the deceased. It also encompasses parents, siblings, grandparents, or grandchildren who relied significantly on the deceased for their basic needs.
Estate: Refers to all the immovable and movable assets of the deceased, such as houses, agricultural produce, land, livestock, food supplies, personal belongings, motor vehicles, shareholdings, bank deposits, and outstanding debts owed to the deceased.
Executor: A male individual appointed in the will of a deceased person to carry out the instructions stated in the will.
Executrix: A female individual appointed in the will of a deceased person to carry out the instructions stated in the will.
Husband: A man who is legally married according to the laws of Uganda or any other foreign jurisdiction where the marriage was celebrated.
Wife: A woman who is legally married according to the laws of Uganda or any other foreign jurisdiction where the marriage was celebrated. This term does not include individuals who had children with the deceased without being legally married.
Personal representatives: Individuals appointed by the court to manage the estate of a deceased person, upon whom probate or letters of administration have been conferred.
Probate: The legal authorization granted by a court of law to manage the estate of the will-maker.
Letters of Administration: The legal authorization granted by a court of law to a person who passes away without leaving a will.
Residential Holding: The primary residence of the deceased person.
Testator: A person who creates a will.

Types of marriages

The law of Uganda recognizes three (3) different types of marriages

Marriage Registration: Marriage celebrated either in a Registered Church, or the Office of the Chief Administrative Officer, or the Registrar General’s
Customary Marriage: A marriage celebrated according to the customs of a given tribal community in These marriages are known as a customary marriage and must be registered.
Sharia Marriage: A marriage celebrated in accordance with the Moslem religion, a Marriage celebrated in accordance with the Hindu

INHERITANCE

Inheritance is the process through which the property and responsibilities left by a deceased person are distributed among specific individuals according to the wishes of the deceased or according to the regulations outlined in the law.

There are two main ways in which inheritance occurs:

Inheritance with a Will: When a person leaves behind a legally recognized document called a will, it specifies how their property should be distributed after their death. The will serves as a guide for the distribution of assets and ensures that the wishes of the deceased are respected.
Inheritance without a Will: In cases where a person passes away without leaving a will, the distribution of their property follows the guidelines established by the applicable laws. These laws determine the order of priority for distributing the assets among the surviving family members.

HOW CAN ONE MAKE A WILL?

Eligibility: Any individual, whether male or female, married or single, can create a will. However, the person making the will must meet the following requirements:
- Be 21 years of age or older
- Be of sound mind (able to understand the implications of making a will)
- Be aware that they are creating a will
Writing the Will: A will should be in writing. The person making the will can choose to handwrite it themselves. If the individual cannot write, they may ask a trusted person to write it on their behalf, while they provide instructions.
Legal Assistance: Alternatively, a lawyer can be hired to draft the will. In such cases, the lawyer will charge a fee for their services.
Ensuring Understanding: It is important to ensure that the person making the will understands its contents and implications. Patiently explain the terms and provisions, addressing any questions or concerns.
Clarity: The will should be clear and unambiguous, leaving no room for misinterpretation.
Seek Support: During the process of making a will, provide emotional support and actively listen to the individual, as it can be a sensitive and personal matter.

WHO CAN MAKE A WILL?

Eligibility: Any individual, regardless of gender or marital status, can make a will if they meet the following criteria:
- Have reached the age of 21 years or older
- Possess sound mental capacity (able to understand the consequences of making a will)
- Act voluntarily and without coercion
- Be aware of their actions while making the will (not too sick or under the influence of alcohol or drugs)

Note: For soldiers at war or marines at sea, the minimum age for making a will is 18 years.
A person who is usually deemed mentally incompetent can create a will during periods of lucidity.
It is important to note that a person who creates a will is referred to as a “testator.” A will is not legally recognized if it is made by a person who:

Is below 21 years of age
Lacks mental capacity at the time of making the will
Was too ill to realize they had not left a will In such cases, the property will be distributed as if no will existed.

IN WHAT FORM CAN A WILL BE MADE?

A will must be in writing. It can be handwritten by the testator themselves. If the testator cannot write, they may dictate the contents to a trusted person who will transcribe it for them.

Alternatively, a lawyer can be engaged to draft the will for a fee.

IMPORTANCE OF MAKING A WILL

Clearly Expressing Wishes: A will articulates the testator’s desires, ensuring that their intentions are followed during the distribution of their property.
Asset Protection: A will establishes guidelines for managing and distributing the testator’s property, providing protection and clarity.
Guardianship Provision: A will may designate guardians for minor children, ensuring their care and well-being.
Avoiding Disputes: By clearly stating the beneficiaries and their entitlements, a will helps prevent disputes and conflicts among relatives.
Establishing Paternity: A will can help avoid disputes over the paternity of children.
Debt Collection: The executor of the will can collect any debts owed to the deceased.
Beneficiary Flexibility: A will allows the testator to allocate their property to individuals beyond immediate relatives.
Debt Settlement: The testator can indicate any outstanding debts owed to them, ensuring their repayment.
Estate Administration Guidance: A will provides instructions for the proper administration of the deceased’s assets and properties.
Responsibilities Allocation: A will can assign various relatives the responsibility of raising children or fulfilling specific duties.
Social and Financial Security: A will helps ensure the well-being and financial stability of dependents, such as orphans and widows.
Debt Acknowledgment: The testator can state if they owe any debts and specify the repayment method.

ESSENTIAL CONTENTS OF A WILL

Full Identification: The will should include the full names, place of birth, tribe, place of origin, names of parents, clan/religion, and address of the testator (person making the will).
Date of Will: The date when the will is made should be clearly stated, including the day, month, and year.
Cancellation of Previous Will: If the testator is revoking a previous will, it should be explicitly stated in the current will.
Executor(s) or Executrix: The names of the executor(s) or executrix (person(s) responsible for carrying out the testator’s wishes as stated in the will) should be mentioned.
Appointment of Heir/Heiress: The full names of the customary heir/heiress (woman entitled to inherit or has a right of inheritance) should be specified.
Guardianship: If there are minor children, the names of the guardians appointed to care for them should be included.
Marital Status and Spouse Information: The marital status of the testator should be indicated, along with the name(s) of the spouse(s) and the place and date of marriage. If separated or divorced, the date of divorce/separation should be stated.
Children: The names and number of all children, whether born within or outside marriage, should be listed.
Dependent Relatives: If the testator wishes to provide for any dependent relatives in the will, their names should be mentioned.
Property Description: A comprehensive list and description of the testator’s property should be provided. This should include assets belonging solely to the testator and not those of others.
Beneficiaries and Distribution: The names and addresses of the individuals, including spouse’s children and relatives, who will inherit the property should be stated. The will should also specify how the property is to be distributed after the testator’s death.
Additional Wishes: Any additional wishes of the testator, such as burial preferences or specific instructions related to the will, should be included.
Creditors and Debt Repayment: Any creditors to whom the testator owes money should be mentioned, along with instructions on how to repay them.
Debtors and Amounts Due: If there are individuals who owe the testator money, their names and the amounts owed should be included.
Signature or Thumbprint: The will should be signed or thumbprinted by the testator to indicate their approval and authentication.
Witness Information: The names, addresses, and signatures of at least two witnesses should be present on the will. Witnesses should not read the will but must attest that the testator voluntarily made the will while of sound mind.

Additional Information to Consider:

It can be useful to include the following details in the will:

Employment Information: Name and address of the employer, start date, job position, salary, and other benefits.
Self-Employment: If self-employed, state the nature of the work and relevant details.
Business Interests: List the names and addresses of businesses in which the testator holds shares or has an economic interest, along with the extent of such interest.
Insurance Policies: Provide information about any insurance policies that benefit the testator or their family members.
Bank Accounts: Specify the names and addresses of banks where the testator holds accounts, including the account numbers.
Burial Wishes: State burial preferences, including the desired burial location and specific instructions for the funeral.
Copies of the Will: Indicate the names and addresses of individuals or places where other copies of the will are kept.

Note: Witnesses to the will must be of sound mind, 21 years of age or older, and should not be beneficiaries named in the will. The will can be written in any preferred language as long as it is understood well by the testator and expressed in simple language.

CAN I CHANGE MY WILL?

Yes, you have the right to change your will at any time based on your preferences and circumstances. There are various situations that may warrant a change in your will, such as acquiring or losing property, having children whom you wish to include as beneficiaries, or getting married to another spouse.

If you decide to make changes to your will, follow these steps:

Create a New Will: You can either draft a completely new document or make the necessary changes to the existing will. If you choose to make changes, clearly state that it is a new will and include the date of the previous will that is being canceled.
Date and Specify Changes: Ensure that the new document is dated and explicitly states that it is amending the first, second, or subsequent wills, mentioning the respective dates. List the specific changes you want to make to the will.
Signatures and Witnesses: Sign your name on every page of the new will or the pages containing the changes, and sign again on the final page. Number the pages accordingly. Two witnesses should witness your signature or thumbprint.
Testator’s Authority: Remember that only the testator (person making the will) has the authority to change their own will. Neither the family nor the clan can alter the will on your behalf.

If a Wife or Child is Excluded from the Will:

Dependents’ Rights: It is generally expected that the testator provides for their dependents, including the wife and children. If you are a wife or child and the will does not provide for you, you can apply to the court. The court will ensure that you are adequately provided for during the distribution of assets or may redistribute the property to guarantee your share.
Matrimonial Home: The matrimonial home cannot be disposed of in a will. It automatically passes to the surviving spouse(s), and minor children below the age of 21 are entitled to live there.

Where Should a Will be Kept?

A will can be entrusted to any of the following individuals or entities, provided you trust them:

Bank Manager
Reverend, Church Priest, or Imam
Local Council Executives
Headmaster or Headmistress
A trusted friend
A spouse
The Administrator General
Your Lawyer
Legal NGOs such as FIDA (U), Legal Aid Project of the Uganda Law Society (LAP), and Legal Aid Clinic (of the Law Development Centre)
A relative
Registrar General’s Office

Invalidation of a Will:

A will may be declared invalid (not legally recognized) by the court if the following conditions are proven:

The testator was of unsound mind or senile when making the will.
The will was made under duress or threats.
The testator was underage at the time of making the will.
The testator married after making the will, rendering it invalid.
The will is ambiguous or unclear in its provisions.
The estate or subject matter of the will no longer exists before the testator’s death.
The will was not signed by the testator or witnessed.
Some or all of the property mentioned in the will was sold, given away, or destroyed before the testator’s death or execution of the will.
The will inadequately provides for the spouse(s), minor children below the age of 21, or dependent relatives who significantly rely on the deceased for their basic needs.

Note: If the court declares a will invalid, the property of the testator will be distributed according to the laws pertaining to individuals who did not create a will.

SHARING OF PROPERTY IN THE ABSENCE OF A WILL

When a person passes away without leaving a will, the law provides specific ways to distribute the property.

The following are the key points regarding property distribution:

Consolidation of Property: All the property owned by the deceased is combined into a single estate. This estate is considered as a whole, representing 100% of the assets.
Distribution Among Dependents: The estate is divided among the eligible beneficiaries based on the presence of a surviving spouse or wives, husband or husbands, and other dependent relatives.

If the deceased left behind a spouse, children, a customary heir, and other dependents, the distribution of the estate is as follows:

All children, whether legitimate or illegitimate, share equally in 75% of the property.
The widow(s) or widower receives 15% of the property along with the family home.
Dependent relatives share 9% of the property, including relatives or adopted children.
The customary heir is entitled to 1% of the estate.

Note: A widow is not considered as property and cannot be shared or taken by another male relative of the deceased husband. However, a widow can choose to remarry freely, even within her former husband’s clan. It is illegal to evict a widow from her former husband’s home.

If the deceased has no children but is survived by a spouse or dependant relatives, the distribution of the estate is as follows:

The wife/wives or husband receives 50% of the property.
Other dependant relatives share 49% of the property.
The customary heir is entitled to 1% of the estate.

If the deceased leaves behind only a wife or dependant relatives, and the customary heir, with no children, the property is distributed as follows:

The wife/wives or husband and dependant relatives (as the case may be) receive 99% of the property.
The customary heir is entitled to 1% of the estate.

Duties and Responsibilities:

Guardians: The responsibilities of guardians appointed in a will include:

Caring for and guiding the children.
Safeguarding the children’s property and ensuring it is used only for their benefit, protecting it from misuse by other relatives.
When the children come of age, handing over the remaining property and providing an account of how it was utilized. Misuse of a child’s property by a guardian is legally punishable.

Executors/Executrix Named in the Will: The duties of executors/executrix named in a will are as follows:

Reporting the death to the office of the Administrator General or the Chief Administrative Officer within two months.
Applying to a court of law for the necessary powers to carry out the wishes of the deceased, as stated in the will.
Collecting the deceased’s property and any outstanding debts owed to or by the deceased at the time of death.
Submitting an account of the estate to the granting court within six months, detailing the distribution of the property.
Supporting the widow/widower, children, and dependant relatives, including paying for children’s school fees, using the funds from the deceased’s estate if available.
Distributing the property according to the deceased’s wishes as stated in the will after fulfilling all the above requirements.

Note: If the will does not name any executors/executrix, close individuals such as the widow/widower, heir, or adult children may individually or jointly apply to the court for letters of administration to handle the affairs of the deceased. This application is made after obtaining a letter of no objection from the Administrator General.

Role of the Local Council: The local council plays a role in inheritance matters, which includes:

Protecting widows and children from relatives who may attempt to claim their property.
Confirming and reporting the death of a person to the office of the Administrator General and the court.

Letters of Administration: Letters of Administration are the authority granted by the court to a person for administering the estate of a person who died without leaving a will.

Eligibility for Applying for Letters of Administration: The following individuals may apply for letters of administration:

The surviving wife/wives or husband of the deceased.
Adult children of the deceased.
Close relatives of the deceased.

Requirements for Obtaining Letters of Administration:

Reporting the death of the deceased with all the necessary documents.
Applying to the Administrator General for a “Certificate of No Objection.”
The certificate of no objection serves as clearance and enables the person to apply to the court for letters of administration.

Note: The acceptance of children by the deceased during their lifetime is a prerequisite for their eligibility to apply for letters of administration.

The situations outlined above represent the most common scenarios in everyday life. However, the following points should also be noted when applying any of these distribution schemes:

Residential Holding: The residential home is not included in the property subject to distribution as outlined above. The residential holding should be held by the person to whom letters of administration have been granted, in trust for the legal heir. The widow and children below a certain age are entitled to reside in the home until specific conditions are met.

In the case of a widow, these conditions include her death, remarriage, or ceasing to occupy the house for six consecutive months, or voluntarily surrendering it.
For female children, these conditions include death, reaching the age of 21, marrying before reaching 21, or ceasing to reside in the house for six consecutive months.
For male children, these conditions include death, turning 18, ceasing to reside in the house for six consecutive months, or more.

Multiple Legal Wives: In cases where there are multiple legal wives, they share the property given to them equally.
Separated Wife’s Entitlement: If a wife has been separated from her husband as a member of the household and the husband dies without a will, she will not automatically be entitled to share in the deceased’s property. She can apply to the court within six months from the husband’s death to request a share of the property. She must demonstrate that there was a reasonable cause for the separation.
Distribution in the Absence of Legal Wife: If a husband’s legal wife passes away without a will, he is entitled to 15% of the property or a larger share if there are no children or dependent relatives to share the estate.
Equal Share for Children: All children, regardless of their birth status (within or outside wedlock), share equally in the children’s share of the deceased’s estate.

It is important to note that it is illegal for anyone to evict the widow or children from the residential home, or to handle the estate without proper court authority.

Will Making Read More »

ETHICS AT THE END OF LIFE

Hastened death: It refers to the act of accelerating the dying process as a response to suffering in the context of a life-threatening condition where the patient sees no other way out.
Assisted Death: This form of euthanasia involves aiding an individual who expresses a desire to die prematurely, either through counseling or by providing a lethal substance.
Assisted suicide: It involves self-killing with the assistance of another person, often a physician or healthcare provider.
Physician-assisted suicide (PAS): This term specifically refers to assisted suicide carried out by a physician or healthcare provider.

Causes/Reasons for Hastened Death

Feeling like a burden to others.
Loss of control over the circumstances of death.
Lack of social support.
Perceived loss of dignity.
Poor quality of life.
Lack of meaning in life.

Approach of a Nurse to a Request for Hastened Death from a Patient

When faced with a request for hastened death, as a nurse, it is important to:

Ensure a clear understanding of what the patient is asking for.
Acknowledge and validate the patient’s suffering.
Actively listen to the patient, paying attention to both verbal and non-verbal communication. Assess the patient for physical, psychosocial, and spiritual distress.
Collaborate with the patient to develop a comprehensive care plan.
Inquire about the patient’s physical symptoms, including pain, dyspnea, nausea, fatigue, constipation, insomnia, itching, and other symptoms specific to their condition. Uncontrolled symptoms can contribute to a request for hastened death if the patient feels it is the only escape from suffering.
Explore the patient’s past experiences with death, which can provide insights into their fears and concerns about their own future.
Identify signs of depression, as it can be challenging to differentiate between physical symptoms of advanced illness and depressive symptoms.
Identify a team member who can establish a strong rapport with the patient and gain a deep understanding of their personal history, cultural background, and relationships. This team member can facilitate communication with other healthcare professionals and provide counseling support based on their expertise.
Understand the nature of the patient’s suffering, considering all dimensions of their experience. Suffering arises when there is a perceived threat to the person’s integrity or continued existence.
Consider the patient’s personal history, including previous experiences with illness and death, significant losses, and unfulfilled hopes and dreams, to ensure that no sources of suffering are overlooked.
Actively investigate and effectively treat symptoms.
Refer the patient to palliative care specialists, anesthetists, interventional radiologists, psychiatrists, and psychosocial and spiritual care providers to ensure comprehensive medical, psychological, and spiritual treatment of the patient’s pain and other symptoms.

Ethics and Legal Considerations in Hastened and Assisted Death

The Controversy: There is an ongoing debate surrounding hastened and assisted death. Advocates argue that terminally ill patients should have the right to die with dignity, while opponents believe that ending one’s own life goes against the principles of the Hippocratic Oath and the sanctity of life.
Ethical Implications of Physician-Assisted Death:
a. Patient Autonomy: Patients possess the ultimate authority over their lives. However, the question of whether physicians should assist them in carrying out suicide raises ethical concerns.
b. Persistent Ethical Arguments: Despite legal and political changes, the ethical arguments against the legalization of physician-assisted suicide remain compelling.
The Right to Choose:
a. Dying with Dignity: Advocates assert that terminally ill patients should have the right to die with dignity. Allowing assisted suicide would provide them with a final exercise of autonomy in their dying process.
b. Humanizing the Choice: By granting the right to choose when to die, individuals would be recognized as active participants in their own lives rather than being seen as mere spectators waiting for death.

ETHICS AT THE END OF LIFE Read More »

ADVANCE DIRECTIVES IN PALLIATIVE CARE

An advance directive, also known as an Advance Directive, is a legal document that upholds the principle of autonomy by expressing a patient’s desires regarding medical treatments when they are unable to make decisions themselves.

Advance directives serve as essential tools for documenting end-of-life patients’ wishes when they are no longer able to make decisions about their medical care. In palliative care, the two most common types of advance directives are:

Living will
Durable power of attorney for healthcare, also known as the healthcare power of attorney or healthcare proxy.

Living Will

A living will is a legally binding document that allows individuals to maintain control over their healthcare decisions in the event that they become incapable of making choices on their own.

It specifically applies to situations where the person has a terminal illness with no possibility of cure or is in a permanent unconscious state, often referred to as a “persistent vegetative state.”

The purpose of a living will is to outline the types of medical treatments the person would or would not want in these circumstances, including decisions regarding life-prolonging measures such as dialysis, tube feedings, or artificial life support like breathing machines.

This document must be written and signed by the patient, and it usually requires witnesses who are not spouses, potential heirs, the patient’s doctors, or employees of the patient’s healthcare facility.

Things to be included in the Living will

Key Elements of a Living Will

Use of medical equipment, such as dialysis machines or ventilators.
Instructions regarding “do not resuscitate” orders, indicating preferences regarding CPR if breathing or heartbeat stops.
Choices regarding the administration of fluids (typically through intravenous means) and/or nutrition (tube feeding) if the person becomes unable to eat or drink.
Decision on whether to receive food and fluids even when unable to make other decisions.
Preferences for pain management, symptom control, and palliative care, even if decision-making capacity is compromised.
Desire to donate organs or other body tissues after death.
Understanding that choosing not to pursue aggressive medical treatment is distinct from refusing all forms of medical care. Other forms of treatment, such as pain medication and antibiotics, can still be administered to ensure comfort, shifting the treatment goal from cure to comfort. It is crucial to clearly express specific preferences and wishes in the living will.

Note: The client has the right to revoke or amend a living will at any time according to their wishes.

Durable Power of Attorney for Health Care / Health Care Power of Attorney

A durable power of attorney for health care, also known as a health care power of attorney, is a legal document that enables the client to appoint a trusted person as their proxy or agent to make health care decisions on their behalf in the event that they become unable to do so.

Principles

The appointed proxy or agent has the authority to communicate with doctors and caregivers and make decisions based on the client’s previously expressed directions.
The chosen proxy determines the treatments or procedures that the client would want or not want. If the client’s wishes are unknown in a particular situation, the agent will make decisions based on what they believe the client would choose.
It is essential to select a person as the proxy whom the client trusts to carry out their wishes, especially in times of stress, uncertainty, and sadness.
The client should have open discussions with their chosen proxy, ensuring they are comfortable with the role and discussing their wishes in detail.
It is advisable to designate an alternate person in case the primary proxy becomes unable or unwilling to fulfill their role. The law generally prohibits health care providers, such as doctors, nurses, or other caregivers, from serving as agents unless they are close relatives.

Client’s Health Care Agent

The following considerations apply to the person chosen as the client’s health care agent:

Must be 18 years of age or older.
Cannot be the client’s treating health care provider.
Cannot be an employee of the client’s health care provider, unless they are related to the client.
Cannot be the client’s residential care provider, unless they are related to the client.
Has the authority to make health care decisions on behalf of the client only when the attending doctor certifies the client as incapable of making their own decisions.
Must make health care decisions on behalf of the client if the client has not documented their health care directives, even in end-of-life situations.
Cannot make decisions for the client if the client objects, regardless of their capacity.
Cannot override a medical power of attorney if one is in effect.

Terms Used in Advance Directives

Do Not Resuscitate Order(DNR)

Resuscitation refers to the medical intervention of restarting the heart and breathing, such as through CPR or the use of life-sustaining devices.

Do Not Resuscitate (DNR) orders are instructions that indicate medical staff should not attempt to revive a patient if their heart or breathing stops.

In the hospital: A DNR order means that no life-saving measures will be taken if the patient’s heart or breathing ceases. It allows for a natural death and may be referred to as an “Allow Natural Death” order. While in the hospital, patients can request a DNR order from their doctor, although some hospitals require a new order with each admission. It’s important to note that a hospital DNR order is only applicable within the hospital setting.
Outside the hospital: Some states have an advance directive known as a Do Not Attempt Resuscitation (DNAR) or special Do Not Resuscitate (DNR) order for use outside the hospital. This order is specifically designed for Emergency Medical Service (EMS) teams and allows patients to refuse full resuscitation efforts in advance, even if EMS is called. It requires the signature of both the patient and the doctor.

Physician Orders for Life-Sustaining Treatment (POLST)

Physician Orders for Life-Sustaining Treatment (POLST) is not an advance directive but a set of specific medical orders that a seriously ill person can complete and have signed by their doctor. The POLST is carried with the patient and is applicable in various healthcare settings. Emergency personnel, such as paramedics and emergency room doctors, are obligated to follow these orders. Without a POLST form, emergency care staff typically provide all possible treatments to keep the patient alive.

Pregnancy

If a woman is of childbearing age, it is important for her to clearly state her decisions regarding healthcare during pregnancy in case of unforeseen circumstances. Whether healthcare providers will honor these decisions depends on factors such as the risks to both the mother and the fetus, the stage of pregnancy, and the policies of the doctors and healthcare facilities involved. Generally, if a woman is in the second or third trimester of pregnancy, doctors will provide necessary medical care to preserve the lives of both the mother and the fetus.

Organ and Tissue Donation

Instructions for organ and tissue donation can be included in the advance directive. Many states also offer organ donor cards for this purpose.

Note: While older adults are the primary demographic with advance directives, it is never too soon to plan for emergencies. For individuals concerned about mental illness, a mental health care directive or psychiatric care directive can outline healthcare choices in the event of serious mental incapacity.

Advantages of Advance Directives

Advance directives provide a simple and clear way for clients to express their wishes in case they become incapacitated and unable to communicate.
These directives allow clients to appoint a trusted person, such as a family member or close friend, to make decisions on their behalf when they are unable to do so or in specific circumstances they have designated.
Creating an advance directive helps alleviate the stress for both family members and healthcare professionals before a serious injury or illness occurs.
By using an advance directive, the course of medical treatment can be guided effectively throughout the patient’s hospice care.
Through an advance directive, patients can communicate their preferences and choices to healthcare providers while they are still able to do so.
Having an advance directive helps ensure that the patient can avoid unnecessary pain by clearly stating their wishes regarding medical procedures.
It also helps the patient avoid unwanted hospitalization by providing instructions on preferred locations for end-of-life care, such as hospice or home.

How a Nurse Can Help a Patient Prepare for Writing an Advance Directive

Assessing and identifying of the patient’s need of an advanced directive.
Informing the patient about the purpose and importance of advance directives.
Providing necessary information to the patient regarding the process of writing an advance directive, including the following:

Emphasizing that a lawyer is not required to prepare advance directives.
Encouraging the patient to inform their physician and loved ones about their specific requests.
Assisting the patient in appointing a healthcare agent who understands their values and is important to them.
Discussing the patient’s preferences for end-of-life care, such as staying in hospice or at home.
Clarifying that advance directives can be official with the signatures of two witnesses who are not named in the document, without the need for an attorney or notary. The completed document should be given to the physician for inclusion in the medical record.
Advising the patient to have someone review the documents to ensure they are filled out correctly.
Stressing the importance of carefully reading and following all instructions to include all necessary information and ensure proper witnessing.
Recommending the patient make multiple photocopies of the completed documents.
Advising the patient to keep the original documents in a safe yet easily accessible place and inform others about their location. The location of the originals can be noted on the photocopies.
Cautioning against keeping advance directives in a SAFE DEPOSIT BOX as others may need access to them.
Encouraging the patient to provide photocopies to their healthcare proxy (agent), doctors, and anyone else involved in their healthcare.

ADVANCE DIRECTIVES IN PALLIATIVE CARE Read More »

DEATH AND DYING

Death is the cessation of life for an individual or organism.

It marks the end of all biological functions that sustain life.

Fears and Concerns surrounding Death

When facing death, patients may have various fears and concerns:

Fear of experiencing pain and suffering during the dying process.
Fear of not being able to cope with the impending death.
Fear for the well-being and survival of loved ones after their own passing.
Fear of the unknown and what lies beyond death.
Fear of leaving unfinished tasks or responsibilities behind.
Fear of being alone in the house once their loved ones are gone.
Family concerns may include unresolved matters or tasks, decisions regarding resuscitation, transportation of the body after death, and burial arrangements.

Principles for Managing Death and Dying

Acknowledge that death is a natural part of life, and individuals should be allowed to pass away peacefully and with dignity.
Provide adequate pain and symptom management throughout the dying process.
Understand that palliative care neither hastens nor postpones death but recognizes dying as a normal process.
Deliver palliative care in a culturally sensitive manner, respecting individual beliefs and practices.
Recognize that patients receiving palliative care often have life-threatening illnesses, such as HIV/AIDS and cancer, allowing for a preparatory period for death.

Signs of Approaching Death

There are certain common signs that indicate the end of life, and it’s important for caregivers to recognize these signs and prepare the family accordingly.

Decreasing Social Interaction: Dying patients may become less socially interactive and exhibit behaviors such as confusion, mumbling, staring into space, plucking at bedclothes, odd hand movements, hallucinations, and agitation. These behaviors can be attributed to failing blood circulation, electrolyte imbalances, or multi-organ dysfunction. Clinical Management:

Explain to the family what is happening and encourage them to allow the patient to rest.
Encourage the family to be present and observant.
Maintain a familiar and comforting environment.
Provide good nursing care and explain the care procedures to the family.
Encourage the family to continue talking to the patient and engage in therapeutic touch, such as holding hands.

Pain: Pre-existing pains may worsen, and new sources of pain may arise. Clinical Management:

Monitor pain relief carefully and continue administering analgesics regularly, even if the patient is comatose.
Review drug dosages as side effects may become more prominent.
Adjust morphine dosing if there is reduced or no urine output.
Stop most drugs as side effects accumulate.

Decreasing Fluid and Food Intake: The patient may have reduced appetite and difficulty eating and drinking. Clinical Management:

Educate the family that food may be nauseating and eating/drinking becomes challenging.
Explain that forcing fluids may cause more problems than withholding, such as the risk of aspiration.
Address concerns about dehydration and emphasize that it is a protective response.
Keep the patient’s mouth clean and moist.
Respect the patient’s wishes regarding food and fluid intake.

Changes in Elimination: Urine and stool output may decrease or stop, and incontinence is possible. Clinical Management:

Reassure the family that changes in elimination may not cause discomfort for the patient.
Assist and educate the family in proper skin and pressure area care.
Use appropriate aids (urinals, bedpans, or catheters) as necessary.

Respiratory Changes: Breathing patterns may change, such as Cheyne-Stokes respiration. The presence of death rattle, a noisy and rattling breathing sound, can be distressing for relatives but usually not for the patient. Clinical Management:

Explain the nature of death rattle and reassure the family and staff.
Optimize positioning to aid postural drainage if applicable.
Suction is seldom necessary and may be traumatic unless the patient is deeply unconscious.
Anti-muscarinic medications can be used to address salivary pooling in death rattle.
Reassure family members about Cheyne-Stokes breathing, as periods of apnea can occur before death.

Circulatory Changes: The extremities may feel cold and appear bluish or grayish. Clinical Management:

Keep the patient covered and warm.
Provide gentle explanation to the family to help them understand the cause of these changes.

Journeying Towards the End of Life(Road to Dying)

It is not possible to accurately predict the exact time of death; however, certain signs indicate that death is approaching.

The dying person may remain aware of their surroundings until the moment of death, though with some limitations such as confusion, mumbling, staring into space, odd hand movements, or seeming to see things. It is important to be mindful of this and engage in conversation, including the patient even if they appear asleep or unconscious.

Encourage ongoing communication with the patient, even when they are too weak to respond.
Reduce unnecessary medications while ensuring effective pain and symptom control.
As the patient nears death, organ function declines. Hepatic and renal functions are reduced, causing medications to linger in the body. This may lead to side effects as the active ingredients accumulate in the bloodstream.
- Action: Temporarily stop morphine for a day (with instructions for breakthrough pain), then resume at a lower dose or longer intervals between doses.

Signs of Death

Breathing ceases entirely.
Heartbeat and pulse stop.
Patient is unresponsive to shaking or shouting.
Eyes may be fixed in one direction, with eyelids open or closed.
Eyeballs become soft.
Skin tone changes.
Generalized stiffness of the body (rigor mortis) occurs several hours after death.

Preparing to Care for the Dying

Preparing Yourself:

Reflect on your own thoughts about death and preferences for dying, which can help you empathize with patients and families. However, avoid projecting your own preferences onto the patient.
Get to know the patient and their family as much as possible before death. If referred late, spend time with them to build trust.
Ensure the patient and their family are aware of your commitment to providing care.
Prepare the patient and their family well in advance for the impending death.
Acquire knowledge about medical management for all possible events.
Be sensitive to spiritual aspects and address them accordingly.
Encourage the family to communicate with the patient, provide reassurance, and engage in appropriate religious practices.
Inquire about any special requests the patient may have for their family after death.
Respect and be knowledgeable about religious and cultural rituals related to death and dying.
Facilitate bereavement support for the family.
Recognize your own emotional attachment to the patient and seek support from a trusted team member.
Remember that autonomy is crucial for adults with cognitive capacity to make decisions.

Preparing the Patient and Family:

Gently ensure the patient and family understand that death is near and explain some signs of dying, such as increased drowsiness, changes in breathing pattern, death rattle, Cheyne-Stokes respiration, changing skin color, and possible terminal restlessness.
Encourage the presence of loved ones, physical touch, prayers, and support from friends and family to bring comfort to the patient.
Reassure the patient and family that dying is typically not uncomfortable and that certain signs (e.g., grunting) do not necessarily indicate pain.
Be prepared to discuss and support cultural needs, as long as they do not cause suffering to the patient.
Address issues related to wills, inheritance, and unfinished business, providing guidance to help protect the bereaved.

Key Considerations in Caring for Dying Patients:

Explain the situation to the family and encourage them to allow the patient to rest.
Maintain a familiar environment for the patient.
Promote therapeutic touch within the family.
Encourage family members to be observant.
If the patient is experiencing pain, continue pain management without discontinuing analgesics, while monitoring relief carefully. Adjust drug dosages if needed.
Respect the patient’s wishes.
Keep the patient’s mouth clean and moist.
Provide support and address the concerns of the patient’s family.

Management of a Dying Patient in Palliative Care

Providing holistic care continues until the end of life and beyond. When necessary, seek assistance from other team members or organizations. There are different paths towards dying, and while most patients follow the “usual” road, some may face a more challenging journey. It is crucial to offer support to these patients and their families.

Navigating the Challenging Path:

Address restlessness, confusion, hallucinations, and delirium by administering haloperidol at a dose of 1.5-2.5mg. First, rule out remediable causes such as a full bladder or rectum.
Treat seizures with diazepam, 5-10mg via intravenous (IV) administration, or if IV is not possible, intramuscular (IM) injection. Alternatively, administer midazolam, 2.5-5mg subcutaneously (SC), which provides relief for up to three hours.
Maintain a calm and supportive environment for both the patient and their family members, offering appropriate physical touch and emotional comfort.

As the disease progresses towards the end of life, there may be an escalation in pain and other symptoms, necessitating adjustments and increased drug therapies. Although good palliative care should ideally control pain before the terminal stage, this may not always be the case.

The pain and symptom assessment and management strategies discussed in previous chapters remain applicable during the terminal phase of illness. However, alternative methods of analgesic administration may be required due to decreased oral intake and consciousness. These methods include:

Rectal administration
- Morphine suppositories may be available.
- Long-acting morphine, such as MST given every 12 hours, can be used rectally.
Sublingual or buccal administration
- Morphine solution can be absorbed from the buccal mucosa, although higher doses may be needed due to variable absorption.
- This method is suitable for moribund patients.
Subcutaneous administration
- The subcutaneous route is useful when the patient cannot ingest medication.
- Intermittent dosing with subcutaneous injections (using a butterfly needle) can be administered, such as 4-hourly morphine.
- Cultural and environmental factors need to be considered before using this route, as acceptability may vary across different regions.

Care After Death:

Allow the family to carry out rituals immediately after death according to their customs or religion.
The body may need preservation and transportation, which can be done in a mortuary or traditionally in the village, allowing for a funeral to take place up to 10 days later.
In Africa, burials often occur within 48 hours, particularly for Muslims who must be buried before sunset on the day they died.
Different customs and rituals are followed in various parts of Africa. For example, many cultures believe the spirit remains present for several days after death.
Friends and relatives may accompany the body for the first 24 hours, providing prayers, hymns, and comfort for both the body and the family.
Some cultures may place food and precious belongings in the coffin.
Burial may take place in the ancestral home or the garden.
Cremation is rare in some African countries, and the depth of bereavement may vary across cultures.

Special Considerations in HIV and AIDS:

Patients who are dying should receive a similar approach to care, regardless of their specific disease.
Simplify the medication regimen to focus only on medicines needed for symptom control, which may involve stopping antiretrovirals (ARVs) or anti-TB treatment.
Home-based care services and HIV support services play a crucial role in providing care.
Ensure that all caregivers are aware of universal precautions, especially when handling bodily fluids.
It can be challenging to determine the end of life for patients with opportunistic infections (OI) who experience severe illness, recover after treatment, and then become ill again.

DEATH AND DYING Read More »

BEREAVEMENT, MOURNING AND GRIEF

Bereavement is the state of having lost something or someone.

The experience of someone who is grieved or bereaved is entirely individual. The way a person grieves depends on a number of factors such as one’s personality and coping style, life experience, faith, and the nature of the loss grieving process takes time.

Grief: is a process of emotional, cognitive, functional behavioral responses to loss or death

Grief is the emotional and psychological experience activated by loss of something dear.

Grief is a natural response to loss. It is the emotional suffering you feel when something or someone you love is taken away. It is felt by an individual, family or community brought about by loss; most intensely with the death of a loved one (HAU, 2011).

Mourning is the period of time it takes to grieve

Periods of mourning vary according to:

The manner of death (long illness, sudden death or traumatic death such as car accident, murder, medical mistake)
The age of the person who dies (a child’s death often feels out of place; an older person has often had longer relationships)
The age of the bereaved (child development affects reaction; life stage is relevant)
Gender (women are often allowed more emotional expression than men)
Previous experiences of loss and their impact
Support systems
Personal coping styles
Family and cultural

Stages of Grief/Grieving

Peoples’ experiences of grief may go through stages as described below. These stages may not be orderly always as some may be missed out sometimes. These include

Stage One: Denial – refusal to believe that death would be likely outcome of this illness. No, not me ‘The tests must be wrong. God would not allow this to happen to me. There has been some mistake.’
We deny that the trauma or loss has occurred. We begin to use;
- Magical thinking: believing that by magic, this memory will go
- Regression: Believing that if we act child-like, others will reassure us that nothing is
- Withdraw: Believing that we can avoid facing the losses and the truth
- Rejection: Believing we can reject the truth and avoid facing the loss
Stage Two: Anger – questioning ‘Why me?’ It’s not fair!’ Who or what can I blame for this illness?’
- We become angry with God, it ourselves, or with others over our pain.
- We pick out a scapegoat on which to vent our anger e.g. the doctor, nurse, hospital,
- We begin to use;
- Self-blaming believing we should blame ourselves for the blame of our trauma.
- Switching blame believing we should blame others
- Aggressive anger believing we have a right to vent out the blame rage aggressively.
- Anger is a normal stage; it must be expressed to be If it is suppressed and help in, it will become locked away or replaced leading to depression that further drains away our emotional energy.
Bargaining – attempt to delay the disaster, ‘Yes, but. . .’‘If I give money to the church or pray and fast every day then I will recover.’
- We bargain or strike a deal with God or others to make the pain go away.
- We promise to do anything to make this pain go.
- We agree to take extreme measures in order to ask this pain disappears.
- We lack confidence in our attempts to deal with the pain looking elsewhere for answers.
- We begin to;
- Shop around believing we look for a cure for our pain.
- Take risks believing we can put ourselves in a jeopardy way to get an answer for our pain.
- Take more care for others believing we can ignore out our needs.

4. Depression – reaction to existing and impending ‘It’s me! ’‘What is the point of struggling on; it is all meaningless.

We become over whelmed by the anger, pain and hurt of our. We are thrown into the depth of our emotional response.
We can begin to have uncontrollable spells of crying, sobbing and weeping.
We can begin to into spells of deep silence, Morose, thinking and deep melancholy.
We begin to experience;
Guilt believing, we are responsible for our loss.
Loss of hope believing we have no hopes or being able to return back to order in life and calm.
Loss of faith believing that because of this loss, we can no longer trust.

5. Acceptance – peaceful resignation it’s part of life. I have to get my life in order. We begin to reach a level of awareness and understanding of the nature of our loss

We can now;
Describe the terms and conditions in our loss
Cope with our loss
Handle the information surrounding this loss in a more appropriate way.
We begin to use;
Adaptive behavior, believing we can begin to adjust our lives to the necessary changes
Appropriate emotion, believing we begin to express our emotional responses freely and are better able to verbalize the pain, hurt, and suffering we have experienced
Patience and self-understanding, believing we set a realistic time frame in which to learn to cope with our changed lives.

Types of grief

Normal/uncomplicated grief: It is the ability of a person to progress satisfactorily through the stages of grieving to achieve resolution.
Anticipatory grief: is the type of grief before an expected loss.
Maladaptive grief: it is the inability to progress satisfactorily through the stages of grieving to achieve resolution i.e. the following types of maladaptive include:
1. Delayed: is the type of grief not experienced immediately after a loss possibly postponed.
2. Inhibited grief: the type of grief experienced by people who have great difficulty in expressing their emotions i.e. children
3. Chronic grief/prolonged grief: It’s a situation where the grieved person continues to feel the effects of loss which extends for a long time and behaves in an abnormal way which may manifest as:
  - Frequent visits to the grave
  - Low self esteem
  - Crying whenever he/she learns of other deaths
  - Speaking and over focusing on the dead person
  - Loss of libido
  - Vague aches
Disenfranchised grief: the type of grief that occurs when a loved person or item losses some of its adorable characteristics through still present i.e. one experiences loss when a loved there is decline in physical abilities in a dementia person through still present/alive
Cumulative grief: the type of grief that occurs when multiple loses are experienced often in a short period of time i.e. it can be stressful because one does not properly grieve one loss before the other
Masked grief: it is the type of grief converted into physical symptoms or other negative behaviours that are out of character i.e. someone experiencing masked grief is unable to recognize that these symptoms or behaviors are connected to loss.
Distorted grief: it presents with extreme feeling of guilt or anger, noticeable changes in behavior, hostility towards a particular person plus other self-destructive behaviors.
Exaggerated grief: it is the intensification of the normal stages of grief as the time moves on.

Factors that can make grief more challenging, harder and prolonged.

Relationship with the deceased: The nature of the relationship you had with the person who passed away can affect the intensity and duration of grief. Having a close and positive relationship can make it harder to let go compared to a difficult or distant relationship.
Circumstances of death: The circumstances surrounding the death can impact the grieving process. Factors such as whether the death was due to natural causes, accident, suicide, or homicide, as well as whether it occurred close to or far from home, can influence the grieving experience.
Personal history: Past experiences of loss and separation, such as the early loss of a parent, can affect how an individual processes and copes with grief.
Individual personality and beliefs: Each person has unique personality traits and belief systems that can influence how they experience and handle grief. These factors can vary greatly from person to person.
Social factors: The social context surrounding the loss can play a role in the grieving process. If the loss is socially stigmatized or not openly acknowledged, such as in the case of AIDS or suicide, it can add additional challenges to the grieving individual. Lack of social support can also make the grieving process more difficult.
Unacknowledged grief: Certain groups, such as gay men, lesbians, and children, may experience grief that is not fully acknowledged or recognized by society. This lack of validation can make the grieving process more complicated for individuals in these groups.

Common reactions in bereavement

Physical Reactions	Emotional Reactions	Social Reactions	Spiritual Reactions
Aches and pains	Disbelief	Needing to say goodbye	Questioning why this has happened
Nausea and/or vomiting	Numbness	Interaction with people at public gathering, funeral	Challenging the belief system (strengthening, decrease or change in beliefs)
Headaches	Sadness	Selecting and undertaking rituals	Bargaining with a higher power
Confusion, weakness and numbness	Crying, even sobbing	Self-absorption and anti-social behaviour	Talking to the deceased
Change in sexual needs (loss/increase of libido)	Unexpected thoughts and feelings, often painful	Needing to talk of the deceased	Dreams that may have significance about the deceased
Vulnerability to infections, cold, illness (low immunity)	Guilt	A sense of isolation from the world (‘in a bubble’)	Review of the meaning of life
Changes in eating and sleeping patterns	Panic and fear	Attempting to carry on as usual (social face)
Shortness of breath	Appearing distracted	Needing to be alone or need to be with others
Dry mouth	Feelings of helplessness
Sweating	Anger (at self and others)
Frequent urination	Blame
	Regret

Grief Counseling

Grief counseling and bereavement support play a crucial role in helping individuals and families navigate the challenging journey of loss. By implementing effective principles and strategies, counselors can provide compassionate care and assist in the healing process.

Principles of Effective Grief Counseling

Convey Support and Compassion: Show empathy and understanding towards the grieving individual, offering a safe space for them to express their emotions.
Acknowledge the Loss: Validate the significance of the loss and create an environment where the person feels heard and understood.
Accept the Inability to Control: Help individuals recognize that grief is a natural process and that they cannot control or hasten its course.
Validate Feelings, Thoughts, and Behaviors: Acknowledge and normalize the range of emotions, thoughts, and behaviors experienced during grief, providing validation and reassurance.
Channel Energy to Adapt and Reestablish Equilibrium: Assist individuals in redirecting their energy towards adapting to life without the deceased, finding new routines, and establishing a new equilibrium.
Encourage Access to Supportive Networks: Emphasize the importance of seeking support from helpful individuals, such as friends, relatives, or support organizations, to foster a sense of community and connectedness.

Bereavement Counseling for Individuals Facing AIDS/Cancer

Help Acceptance of Death: Work towards helping the patient and their family accept the finality of death, while addressing fears and finding ways to ease them.
Reflect on Achievements and Past Time: Encourage patients to reminisce about their accomplishments and meaningful moments, while identifying sources of support, such as friends and relatives.
Provide Information on Symptom Management: Offer guidance on managing distressing symptoms associated with the illness, helping alleviate discomfort and improve quality of life.
Explore Religious and Cultural Beliefs: Respect and explore the patient’s religious and cultural beliefs, assisting in connecting them with appropriate sources of spiritual support.
Discuss the Future for Family: Facilitate discussions about the patient’s concerns regarding their family’s well-being after their death, encouraging open dialogue and planning for the future.

Bereavement Counseling After Death

Encourage Presence and Farewells: Support family members in spending as much time as needed with the deceased, allowing them to say their goodbyes in their preferred manner.
Sensitivity in Language: Use the deceased person’s name instead of impersonal terms like ‘the body,’ and provide detailed information if the family was not present at the time of death.
Repeat the Story of Illness and Death: Encourage family members to share and repeat the story of the illness and death, allowing them to process their experiences and emotions.
Involve Children and Explain the Situation: Include children in discussions, explaining what is happening in an age-appropriate manner to help them understand and cope with their grief.

Continuous Counseling After Death

Use Reminders for Memories: Encourage the bereaved to use photographs or other reminders to remember the deceased and cherish memories.
Involve Extended Support Network: Engage extended family members, friends, or volunteers to continue visiting and providing emotional support to the bereaved.
Encourage Open Communication: Foster an environment where family members can openly express their feelings, including guilt, relief, pain, or anger, promoting mutual understanding and support.
Active Listening: Prioritize active listening over excessive talking, allowing the bereaved person to share their emotions and experiences without interruption.
Discourage Major Life Decisions: Caution against making significant life decisions during the immediate grieving period, as emotions may cloud judgment and practical considerations may be overlooked.
Support Rituals and Grieving Processes: Acknowledge and support the use of rituals that can aid in the grieving process, respecting the bereaved person’s cultural and religious customs.
Self-Awareness of the Counselor: Maintain self-awareness of personal losses and emotions, ensuring that the counselor remains empathetic and focused on the needs of the bereaved.
Remember Special Dates: Make an effort to remember important dates such as birthdays and death anniversaries, reaching out to offer support and remembrance.
Encourage Emotional Well-being: Promote self-care, relaxation, and socialization, reminding the bereaved of the importance of taking care of themselves during the grieving process.

Complications of Grief

Chronic Depression: Prolonged and persistent feelings of sadness, hopelessness, and lack of interest in previously enjoyed activities.
Substance Abuse: Turning to drugs or alcohol as a way to cope with the pain of grief, leading to dependence and addiction.
Suicidal Behavior: Expressing thoughts or engaging in actions that indicate a desire to end one’s life. Immediate intervention and professional help are essential.
Prolonged Grief: Experiencing intense and persistent grief symptoms beyond what is typically expected, with difficulty adjusting to life without the deceased.
Chronic Physical Symptoms without Medical Reasons: Developing persistent physical symptoms such as headaches, stomachaches, or fatigue without an identifiable medical cause.
Severe Disease: The onset or worsening of chronic or severe health conditions as a result of the stress and emotional toll of grief.
Risk-Taking Behavior: Engaging in reckless or dangerous activities, potentially as a means to escape from or numb the pain of grief.
Persistent Sleep Disorders: Experiencing ongoing sleep disturbances, such as insomnia or nightmares, that significantly impact daily functioning.
Persistent Denial: Refusing to accept or acknowledge the reality of the loss, often avoiding discussions or reminders of the deceased.
Identification with the Deceased: Developing symptoms or behaviors similar to those exhibited by the deceased, as a way of connecting or holding onto their memory.

The role of the nurse in grief and bereavement

Provide Active Listening: Nurses listen attentively and non-judgmentally to individuals experiencing grief, creating a safe space for them to express their emotions and concerns.
Support Future Exploration: Nurses encourage patients to gently explore what the future may look like without the deceased, helping them envision possibilities and find hope amidst their grief.
Assess and Foster Social Support: Nurses assess the patient’s social support systems and help them develop and strengthen connections with family, friends, or support groups, recognizing the importance of a strong support network during the grieving process.
Facilitate Time with the Deceased: Nurses respect the desires of the bereaved to spend time with the body of the deceased at the time of death, creating opportunities for final goodbyes and closure.
Respect and Validate Feelings: Nurses honor the emotions of grieving individuals without judgment, recognizing that each person’s experience of grief is unique and valid.
Identify and Normalize Grief Manifestations: Nurses assist in identifying the various manifestations of grief, such as emotional, physical, and cognitive symptoms, helping patients understand that these reactions are normal and part of the grieving process.
Aid in Identifying Meaning of Loss: Nurses help survivors explore and identify the practical implications and meaning of their loss, supporting them in navigating the challenges and adjustments that come with bereavement.

Grief and Bereavement in Children:

Introduction:

School-going children require special attention following the death of their parents compared to preschoolers.
The experience of grief varies and is influenced by factors such as age, past experiences, and personality.
Children may express grief through crying and seeking solitude.
Bereaved children may experience deep sadness and a sense of something missing.
Even if their reactions are not visible, the pain of loss remains consistent.
Many children are not encouraged to grieve initially, but as they grow older, they may feel a sense of loss that can be expressed in different ways, even into adulthood.

Concept of Grief and Loss in Children:

Children’s ability to cope with death depends on their age and cognitive development.
They encounter death through various means like seeing dead animals, watching it on TV, or hearing about it in their homes, schools, and communities.
Children living with HIV may contemplate their own mortality and may have experienced multiple losses.
After a death, children need information, reassurance, and a safe space to express their feelings and participate in counseling.

Common Reactions of Bereavement in Children:

Children’s reactions to grief vary based on their age, personal development, and environment.
Understanding of death changes as children grow older:
- Children aged 0-2 years: Experience the loss of physical contact, security, and comfort when a primary caregiver dies. Show upset through changes in sleeping or eating patterns, crying, irritability, and withdrawal.
- Children aged 3-6 years: Unable to comprehend death as permanent and may expect the deceased person to return. Confuse fact and fantasy, sometimes attributing death to magic. Grieve in intermittent bursts, appearing to forget about the death at times but becoming upset again later.
- Children aged 6-9 years: Grasp that death is permanent and universal but may still imagine it as avoidable. Develop an interest in practical aspects such as what happens to the deceased person’s body. May feel a sense of responsibility for the death based on their behavior or thoughts.
- Children aged 9-12 years: Possess a similar understanding of death as adults. Recognize that death is universal, unavoidable, and permanent. Understand that death can be sudden and fear their own mortality. Begin contemplating the meaning of life and what happens after death.
- Adolescents: Have an adult-level understanding of death. May engage in risk-taking behaviors as a way to explore life and test boundaries.

Practical Ways to Support a Grieving Child:

Storytelling: Utilize storytelling as a helpful tool for children to process loss, grief, and transition.
Support and Counseling: Provide extensive support and counseling to guide a child through the bereavement period and help them transition back to normal life without complications of grief.
Communication and Expression: Encourage open communication within the family, allowing children to express their emotions through dressing, writing, storytelling, and games.
Preparation and Truthfulness: Prepare children by explaining the truth about the loss. An unprepared child may feel overwhelmed by sudden loss and experience shock and confusion.
Coping Skills Development: Help children develop coping mechanisms to navigate their grief. Offer age-appropriate guidance and support during counseling sessions.
Age-Appropriate Communication: Speak and listen to children using language and concepts suitable for their age and level of understanding.
Consistency and Stability: Maintain consistency in the child’s daily routine and environment, recognizing that grieving children may face multiple losses, such as changes in schooling or separation from their home.
Individualized Approach: Allow each child to grieve at their own pace, respecting their unique needs and providing individualized care.
Active Listening and Empathy: Assure the child that you are listening and genuinely care about their feelings at any given moment.
Normalizing Death: Teach children that death is a natural part of life by relating it to examples from nature, such as flowers, leaves, and animals, which can help them accept the reality of death.
Patience and Understanding: Recognize that children react differently to grief, requiring patience and understanding from caregivers and professionals.
Involvement and Choices: Offer grieving children choices, such as visiting the hospital, viewing the body, or attending the funeral, empowering them to participate based on their comfort level.
Continuity and School Support: Encourage a sense of continuity in the child’s schooling, as it can help them feel that life is returning to normal.

Things to Say to Children:

Explain that death is universal and inevitable, using examples from nature like flowers and leaves.
Acknowledge that death can be unpredictable.
Assure children that it’s okay to wish the person had not died.
Validate their feelings of anger and sadness.
Encourage reliance on religion and beliefs to accept and understand the concept of death.
Do not shy away from using the words “dead” or “death.”
Reassure children that they had nothing to do with the death.
Be honest about not having all the answers.
Highlight aspects of their life that will remain unchanged, such as the same room, school, toys, and friends.
Emphasize that life continues after pain and that there will be happy times again.

Things Not to Say to Children:

Avoid saying that the deceased is “sleeping” or has been “lost,” as it can confuse and frighten children.
Refrain from suggesting that the deceased “wanted” to go to heaven, as it implies a choice that may cause the child to feel abandoned.
Avoid trying to stop the grieving process by using phrases like “big boys don’t cry.” Allow children to express their grief naturally.

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SPIRITUALITY IN PALLIATIVE CARE

Spirituality is defined as a way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.

Spirituality means different things to different people. Religion and faith might be part of someone’s spirituality, but spirituality isn’t always religious.

Everyone has spiritual needs throughout their lives whether they follow a religion or not. Spiritual wellbeing is often described as feeling at peace.

Spiritual distress – also called spiritual pain or suffering – can occur when people are unable to find sources of meaning, hope, love, peace, comfort, strength and connection in their life. This distress can also affect their physical and mental health. Terminal illness can often cause spiritual distress in patients as well as their family and friends.

Spiritual needs

Spiritual needs are those needs and expectations which humans have to find meaning, purpose, and value in their life.

Forgiveness: Needs of being forgiven by God or others; forgiving self, others, and God.
Relatedness: Need of being related or connected to something, group or community in points of life of a patient.
Reassurance: Need of removing one’s doubts or fears by cheering up or provision of solace.
Acceptance: Need of being received by others the way you are
Peace: Need of being in a state or period in which there is no war.
Hope: Need of something to happen in future
Self-esteem: Need to feel good about one’s self achievement.
Control of your life, behavior, choices
Dignity: Need of being worthy of respect
Personal worth: Need of respect from others
Gratitude: Need of being thankful

Assessment of spiritual needs

Creating a good rapport to the patient
Encourage patients to talk about how they’re feeling. Someone might have unmet spiritual needs if they are: searching for meaning, for example asking questions such as ‘Why is this happening?’, ‘Why me?’, ‘Who am I?’ and ‘How will I be remembered?’ becoming more withdrawn and isolated, afraid of being alone, refusing care saying they feel scared or worried.
Many health and social care professionals find it hard to discuss spirituality with their patients. Some of the reasons for this include: lack of training, not knowing what to say, being concerned about saying something inappropriate.
Using spiritual assessment tools.

Spiritual assessment tools

a) HOPE tool

H – Hope: Requires assessing the patient’s sources of hope, strength, comfort and peace.
O – Organized religion: Requires assessing the patient’s religion or faith and how it is important to the patient.
P – Personal spirituality and practices: Involves assessing the patient’s sense of meaning and purpose in life and how it adds sense to his/her identity.
E – Effects on medical care and of life issues: Involves assessing how medical care of the patients affects his purpose and meaning of life.

a) FICA tool

F – Faith, belief, meaning: Involves determining whether or not the patient identities with a particular belief system of spirituality at all
I – importance and influence: Involving understanding the importance of spirituality in a patient’s life and the influence on health care decisions.
C – Community: It involves finding out if the patient is part of a religious or spiritual community or if they rely on their community for support
A – Address/Action: Involves addressing spiritual issues of the patient with regards to caring for the patient.

Questions to ask under each spiritual assessment tool:

a) HOPE tool:

H – Hope:

What are the sources of hope, strength, comfort, and peace in your life?
How do these sources of hope help you cope with challenging situations?
Can you provide examples of times when hope has played a significant role in your life?

O – Organized religion:

Do you follow a particular religion or faith?
How important is your religion or faith to you?
In what ways does your religion or faith provide support and guidance in your life?

P – Personal spirituality and practices:

What activities or practices give you a sense of meaning and purpose in life?
How do these practices contribute to your overall well-being?
Can you share any experiences where these practices have had a positive impact on your life?

E – Effects on medical care and life issues:

Has your illness affected your ability to engage in activities that give your life meaning and purpose?
Are there any specific spiritual practices or beliefs that we should consider when providing your care?
Would you like to discuss any concerns or questions related to spirituality and its connection to your medical care?

b) FICA tool:

F – Faith, belief, meaning:

Do you identify with a particular belief system or spirituality?
How does your spirituality or belief system influence your daily life?
Do you find meaning or purpose in your spiritual or religious beliefs?

I – Importance and influence:

How important is spirituality in your life?
Have your spiritual beliefs influenced any decisions you’ve made regarding your health or healthcare?
Do you seek spiritual guidance or support when facing medical challenges?

C – Community:

Are you part of a religious or spiritual community?
Do you find support or strength from your community in times of need?
How does your community contribute to your spiritual well-being?

A – Address/Action:

How can we address any spiritual concerns or needs you may have during your care?
Are there any specific ways we can incorporate your spirituality into your treatment plan?
Would you like assistance in connecting with a spiritual or religious counselor?

Remember to ask these questions with sensitivity and respect, allowing the patient to express their thoughts and beliefs openly.

Spiritual interventions a Nurse can encourage a patient to consider.

Spiritual interventions are tailored to the individual patient’s needs and cultural background.

Respecting one’s own dignity and worth: Recognizing and honoring the value and importance of oneself as a spiritual being.
Developing/using your own spiritual resources: Exploring and utilizing personal beliefs, practices, and strengths to find comfort and support.
Praying and meditating: Engaging in prayer or meditation as a means to connect with one’s spirituality, seek solace, or find guidance.
Joining a prayer group: Participating in a community of individuals who come together to pray and offer mutual support.
Participating in religious services: Attending religious ceremonies or services that align with one’s faith or belief system.
Actively forgiving ‘those who have trespassed against you’: Practicing forgiveness towards others who may have caused harm or hurt, fostering emotional and spiritual healing.
Forgiving your own frailty and mistakes: Extending forgiveness and compassion towards oneself, acknowledging and accepting imperfections.
Creating and nurturing inner peace: Engaging in activities that promote a sense of tranquility and harmony within oneself.
Seeking help from your religious/spiritual adviser: Consulting with a trusted religious or spiritual counselor for guidance, support, and counsel.
Spending time appreciating nature: Connecting with the natural world, finding solace and inspiration in the beauty and serenity of the environment.
Listening to sacred music: Engaging with music that holds spiritual or religious significance, allowing it to uplift and provide comfort.
Surrounding yourself with people who have sound ethical principles: Being in the company of individuals who embody values and principles that align with one’s own spiritual beliefs.
Using gentle humor with oneself and others: Incorporating lightheartedness and humor in a compassionate and respectful manner to promote well-being and positive relationships.
Actively striving for wholeness: Engaging in personal growth and self-care practices that foster physical, emotional, and spiritual well-being.

Personal awareness

Personal awareness is the ability to know and understand oneself, including one’s values, beliefs, strengths, weaknesses, and emotions.

It is an important skill for anyone who provides palliative care, as it allows us to be more sensitive to the needs of our patients and their families.

Benefits of personal awareness in palliative care:

We are more in charge of our lives. When we know ourselves well, we are better able to make decisions that are in our best interests. This is especially important when we are providing care to others, as we need to be able to set boundaries and take care of ourselves.
We develop greater sensitivity to our own feelings and to those of others. When we are aware of our own emotions, we are better able to understand and respond to the emotions of others. This is essential in palliative care, as we are often dealing with people who are experiencing a wide range of emotions, such as grief, fear, and anger.
Reflecting on our own experiences in life can help us to help others. When we reflect on our own experiences, we can gain insights that can help us to understand the experiences of others. This can be especially helpful when we are working with people who are facing challenges that we have faced ourselves.
We are better able to resolve our own problems or life issues, if we know ourselves well. When we know ourselves well, we are better able to identify and address our own problems. This can help us to be more effective in our work, as we will be less likely to be distracted by our own personal issues.

The Johari window: model of self-awareness

The Johari window is a model that is useful for understanding oneself and others. It was developed by Joseph Luft and Harry lngham in the 1950’s. They devised four windows that represent the areas of the mind and it’s functioning within us and others.

(i) Open area:

This is the area of an individual that is known to self and others.

Examples of information that might be in the open area include:
- Your name, age, and occupation.
- Your hobbies and interests.
- Your likes and dislikes.
- Your strengths and weaknesses.
- Your values and beliefs.

The aim should be to develop this area for every person as it leads to effectiveness and productiveness in the way we handle patients and families receiving palliative care.

Here good communication and cooperation occur, free from distractions, mistrust confusion and misunderstanding.

(ii) Blind area.

This is the area of an individual that is unknown to self but is known to others. ∙ By soliciting feedback from others. the aim should be to reduce this area and thus increase the open area (increase self-awareness)

∙ This area also includes issues that others are deliberately withholding from the person. It includes information that others have observed about the person, but the person themselves is not aware of.

Examples of information that might be in the blind area include:
- Your body language.
- Your tone of voice.
- Your facial expressions.
- Your habits.
- Your blind spots.

(iii) Hidden area

This is the area of an individual that is known to self but unknown to others and we usually prefer it to remain unknown to others.

It includes information that the person does not want others to know about.

Examples of information that might be in the hidden area include:
- Your secrets.
- Your fears.
- Your insecurities.
- Your vulnerabilities.
- Your past mistakes.

Represents information, sensitiveness, fears, hidden agendas, manipulative intentions, secrets that one knows but does not reveal

Reducing the hidden areas reduces the potential for confusion, misunderstanding, poor communication, etc. which can all distract from and undermine effectiveness

The extent to which an individual discloses personal feelings and information, and the issues that are disclosed, and to whom, must always be at the individual’s own discretion. Should disclose at a pace and depth that is comfortable for the individual

(iv) Dark area

This is the area of an individual that is unknown to self and unknown to others. This is normally an area of potential for personal growth and development.

∙ Contains information, feelings, latent abilities, aptitudes, experiences that are unknown to the person him/herself and unknown to others in the group.

This is normally an area of potential for personal growth and development.

Examples of information that might be in the unknown area include:
- Your latent abilities.
- Your aptitudes.
- Your experiences.
- Your potential.
- Your shadow self.

Large unknown areas would typically be expected in younger people, than those who lack experience or self-belief.

Counselling can uncover unknown issues, but this would then be known to the person and by one other rather than by a group. Providing people with the opportunity to try out new things, with no great pressure to succeed, is often a useful way to discover unknown abilities, and thereby reduce the unknown area. ∙ Creating a culture, climate and expectation for self-discovery helps people to fulfill their potential and achieve fore.

Discovery through sensitive communications, active listening and experience will reduce the unknown area.

A guide to developing self-awareness

The following questions are a good guide for better understanding of self.

Questions	Factors to Consider
Where am I in my life journey?
What social and cultural factors influence me?	– Country
	– Tribe
	– Social norms
	– Beliefs (cultural, religious, etc.)
	– Judgments and principles
From birth, what influences me?	– Family
	– Family I marry into
	– Education
	– Opportunities
	– Work
	– Friends
What do I think about my physical appearance?	– How I see myself
	– Am I satisfied with my appearance?
What is my image of God?	– Distant or near?
	– Loving Father or Judge?
	– Existing or not?
What are my weaknesses?	– What frightens me?
	– What makes me angry?
How do I deal with difficult situations?	– At work
	– At home
	– Consider using a model of reflection
What unique gifts, talents, and skills do I bring to
this world?
What gives me meaning and purpose in life?

SPIRITUALITY IN PALLIATIVE CARE Read More »

ANGER ISSUES IN PALLIATIVE CARE

Anger is the strong emotion that one feels when he/she thinks that someone has behaved in an unfair, cruel or unacceptable way.

Anger is a strong feeling of annoyance, displeasure, or hostility.

Anger in patients and families is a common problem in the care of persons with advanced disease. Whereas it is widely accepted that anger may be a justifiable reaction to significant illness and loss, it frequently creates difficulties for the doctors involved in care. In particular, there is often a personal impact on the doctor at whom anger is directed.

Anger is a commonly encountered emotion in the cancer setting. Understanding its origin is vital but the practitioner needs to facilitate more than the ventilation of feelings; some change in attitude, the provision of social support and the promotion of adaptive coping need to be generated.

The perceived unfairness of illness and death commonly underpins anger in the patient with cancer.

Common sources of anger

Fear is probably the most common source of anger, especially in the dying and their families.

Fear of the unknown,
Being in pain or suffering,
The future well-being of family members,
Abandonment,
Leaving unfinished business,
Losing control of bodily functions or cognition,
Being a burden to the family, and dying alone.
A genuine insult – so called “rational anger” (e.g. Waiting six hours to see the doctor);
Organic pathology: frontal lobe mass, dementia or delirium; and
Personality style/disorder – the person whose approach to much of life is via anger or mistrust.

“BATHE” approach

Use the “BATHE” approach to create an empathic milieu (A person’s social environment). As with any difficult patient situation, communication techniques are especially important so that both the patient and physician do not become further embittered and frustrated.

Background: Use active listening to understand the story, the context, the patient’s situation.
Affect: Name the emotion; for instance, You seem very angry…. It is crucial to validate feelings so the angry person feels that you are listening. Attempting to defuse it, counter it with your own anger or ignore it, will be counter-productive. Acknowledging their right to be angry will help start the healing process and solidify the therapeutic relationship.
Troubles: Explore what scares or troubles them the most about their present and future. Just asking the question Tell me what frightens you? will help them to focus on circumstances they may not have considered.
Handling: Knowledge and positive action can help mitigate fears and reduce anger. How are they handling the dying – are they making concrete plans about their finances, their things, their family? Have they thought about formal counseling to help deal with depression and anger?
Empathy: By displaying empathy and concern you can help the person feel understood, less abandoned and alone. Avoid trite statements such as I know what you’re going through. Paraphrasing the patient’s comments is an effective way to convey that you heard and are seeking to understand: You feel like it’s so unfair that the cancer appeared out of nowhere after all these years.

Effective’s ways of managing anger.

Understand that it’s not easy being a patient or a family: trying to understand that it’s really not easy being a patient nor to be a relative whose loved one is in critical condition because no person would ever want to be stuck in the hospital for days, and to be taken care of by different strangers every eight to ten hours.
Show empathy: As a nurse, show empathy by focusing your attention on their feelings, expressions, and actions and show them that you are interested and that they are important.
Allow the patient to blow off some steam or ‘calm down: allowing patients to calm down first before you give them your explanation i.e. reminding yourself that they are not happy about being ill, so it’s best to just try your best to keep yourself cool while waiting for them to calm down.
Do not invade the patient’s personal space: Try not to get either too close or too far from them i.e. let them feel that they still have their own personal space that you wouldn’t be invading and that they are safe there.
Do not touch them: Let the patient speak their mind from a comfortable distance, but not too far that you’d have to shout at each other, or too near that you’d be uncomfortable to speak.
Be sensitive: Being sensitive to people’s feelings means accepting them and respecting them no matter what happens i.e. if a patient gets mad at you for something, don’t think that he is a bad patient or person rather think about how you would feel if you were in their shoes.
Be gentle: If you are to respond, do it in a calm and kind manner and if you want to make the situation better, try to avoid negativity. Instead, focus on something that you can do to help the person i.e. Think before you respond to anything the patient says because sometimes, people react too quickly without taking time to think about how their responses might affect others.
Do not argue: Being truthful of everything you say, and try not to think that you are always right. Communicating better and having a positive behavior towards any issue will solve anything.
Apologize for the inconvenience: Apologizing will not make you less of a person; it will only show that you are strong and brave enough to accept your mistakes. It could also lessen any tension that may occur between you and your patients (or their family members).
Settle the issues immediately: Of course, it is best to work on the complaint as soon as you can. The patient or family member is angry for a reason. Make sure to take note of the details of their complaint and find time to fix it.
Keep your promises: When dealing with patients, you tend to say things you do not mean, and more often than not, give promises that you cannot keep.
Set boundaries: Keep yourself safe but let them know that you are listening to them i.e. defuse situations before they even escalate e.g. a patient has the right to be involved in their medical decision-making, but they cannot use that right for any unreasonable demands.
Communicate: Being honest with everything you say to the patient and being available and responsive to your patients i.e. never let them feel that you are ignoring them.
Acknowledge the emotion that the patient is projecting: Validating the person’s feelings will help them feel understood i.e. let them feel that their feelings make sense, that you hear them and you understand them.
Listen: Active listening also means you should look at the problems from the other person’s point of view i.e. focus on what the person is saying to you before offering any help. Remember to take note of what they are saying, and try to retain the information.
Ask open-ended questions: Ask gentle, probing questions to learn more about what the other person think and feel i.e. ask clarifications if you don’t get what the patient is trying to say.

ANGER ISSUES IN PALLIATIVE CARE Read More »

BREAKING OF BAD NEWS

Breaking bad news to patients and their families is one of the most difficult responsibilities in health care.

Bad news is any news that drastically and negatively alters the patient’s view of his or her future”

“The impact of bad news depends on the size of the gap between the patient’s expectations, including his or her ambitions rind plans, and the (medical) rectify of the situation” (Buckman 1984)

“Breaking bad news is like major surgery whether we like it or not we are inflicting a psychological injury which is every bit as damaging as the amputation of a limb. Like amputation, it requires time, planning and a proper place to carry out the operation.”

Importance of breaking bad news

In order to maintain trust.
In order to reduce uncertainty (the hardest of emotions to bear).
To prevent instilling false hope.
To allow for appropriate adjustment (practical and emotional) so that the patient can make informed decisions.
To prevent a conspiracy of silence which destroys family communication and prevents mutual support.

Skills for breaking bad news

Listening
Observation
Empathy
Ability to find right words to use

Barriers to Breaking Bad News

Patient barriers:
- Denial
- Lack of understanding
Family barriers:
- Collusion
Health professional barriers:
- Feeling incompetent
- Fear of causing pain
- Avoiding getting blamed
- Feeling like they’ve failed the patient by not curing them
- Wanting to shield the patient from distress
- Fear of showing emotions
- Not having enough time
- Fear of saying “I don’t know”
- Having fears of their own illness and death

How to Overcome Barriers to Breaking Bad News

Be prepared. Know the patient’s condition and prognosis, and have a plan for how to deliver the news.
Create a supportive environment. Find a private place where you won’t be interrupted, and allow the patient and their family to bring someone with them for support.
Start by listening. Ask the patient what they know about their condition, and what they want to know.
Be honest and direct. Don’t sugarcoat the news, but be respectful of the patient’s feelings.
Answer questions honestly. The patient and their family may have a lot of questions, so be prepared to answer them as best you can.
Offer support. Let the patient and their family know that you’re there for them, and that you’ll help them through this difficult time.

Considerations for Breaking Bad News

Location:
- Ensure that there is privacy where possible.
- Ensure that you have time to talk to the patient without rushing, interruptions, or distractions.
Establish existing knowledge about their condition:
- Ascertain what the patient knows about their condition.
- Pay attention to specific terms the patient uses.
Communication skills:
- Use open-ended questions.
- Use a gentle tone of voice and pace of information.
- Use suitable non-verbal communication.
- Be consistent and use simple language.
- Enable the person to come to their own conclusions.
Tell the truth:
- Never lie to a patient.
- Be gentle with the actual breaking of bad news.
- Give hope in the form of what can be undertaken to control symptoms and improve quality of life.
- Do not give false hope of a cure.
- Check whether the patient has understood what has been said.
Reassurance and support:
- Give reassurance about continued support.
- Arrange another appointment to see the patient again.
- Encourage the patient to ask questions.
- If the patient agrees, tell the patient and family together.

Methods/protocols of breaking bad news

SPIKES method
BREAKS method

Spikes protocol of breaking bad news

S – Set up the interview: Plan ahead for details such as being sure that you are in a private, comfortable setting, that significant others are involved (if the patient wants that), and that your pager is silenced.

It is worth investing some time and thought in practical issues such as:

Where will an interview about bad news take place?
Who will be present?
How will you start the discussion?

These simple things can help both you and the patient to feel more at ease, which will aid communication later in the conversation.

Where? If at all possible, use a separate room where you can sit down together in privacy. If this is not possible, and the patient is in hospital, try at least to screen off the area where you will be talking. This does not prevent others from listening, but the patient does not have to cope with the bad news in full view of others. You will probably be more comfortable too; don’t forget to minimize interruptions such as mobile phones.

Who? If the patient has visitors when you arrive, find out who they are. Ask the patient whether she/he is happy to continue the interview with the visitor(s) present. Beware that the patient may find it hard to truthfully answer this question while the visitor(s) is (are) listening. Some patients may wish to have a particular relative present when they are told bad news, and this option should also be given. For example: ‘We now have the results of your tests Benjamin, would you like me to explain them to you now, or would you like a friend or relative to be with you when we go through things?’

How do you start?

Firstly, do not forget to ensure that the patient is covered up and comfortable. Greet the patient by name, and introduce yourself if the patient does not know you well. It is useful to begin by creating a rapport. Next you may ask a question such as ‘How are you feeling today?’ This shows that you are interested in his/her condition, gets the patient talking, and allows you to assess something of the patient’s current symptoms (if the patient is in pain, or feeling nauseated, that should be addressed if at all possible before proceeding to a sensitive conversation).

P – Assess the patient’s perception: As described earlier, before you begin an explanation, ask the patient open-ended questions to find out how he or she perceives the medical situation. In this way you can correct any misunderstanding the patient has and tailor the news to the patient’s understanding and expectations.

It is vitally important to the rest of the consultation to establish what the patient already knows about their condition, how serious they think it is, and how they expect it to affect the future. Useful starting phrases include:

‘What do you understand about your illness?’
‘What have you been told about this illness?’
‘Have you been concerned that this may be something serious?’

Listen to the patient’s reply carefully. As well as telling you about his/her understanding of the medical situation, it will give you information about the patient’s emotional state, educational level, and vocabulary. This will help you later to explain things at a level, which is appropriate.

I – Obtain the patient’s invitation: Find out how much detailed information the patient wants regarding diagnosis and prognosis.

In any conversation about bad news, the real issue is not ‘do you want to know’, but ‘at what level do you want to know what is going on’. The majority of patients will know themselves when things are not going well (especially if they have heard no good news). In asking the patient about information sharing, you are simply finding out how much detailed information the patient wishes to know.

Research studies have demonstrated that most patients do desire full disclosure, although they may not want to know all the details at the start. By establishing how much the patient wants to know we are allowing them to exercise their preference.

The following are examples of useful ways to phrase the question:

‘Are you the kind of person that likes to know all about their illness?’
‘Would you like me to tell you the full details of the diagnosis, even if it is something serious?’
‘Would you prefer me to discuss the situation directly with your family?

In all of these, if the patient does not want to hear about the full details you have not cut off all lines of communication. You are saying clearly that you will maintain contact and communication, but not about the details of the disease.

K – Give knowledge and information to the patient: Communicate in ways that help the patient process the information. For example, preface your remarks with a phrase such as, “I’m sorry to tell you that …” or “Unfortunately I have some bad news to tell you.” Use plain language and avoid medical jargon: use the word “spread” instead of “metastasized,” for instance. Provide information in small amounts, use short sentences, and check periodically for understanding.

Now the process of sharing information can commence, aimed at bringing the patient’s perception of the situation closer to the medical facts. Information needs to be given in small chunks, and using a warning shot is very valuable, especially if the news is unexpected.

A useful phrase may be one such as ‘Well, the situation appears more serious….’ followed by a pause then using a narrative approach, possibly describing events leading up to this point.

Understandable language needs to be used, avoiding medical terminology as much as possible. The patient’s understanding of the discussion should be checked frequently and important points can be clarified as necessary. Further clarification may be undertaken by repeating important points and also by using diagrams and writings, if this is appropriate.

E – Address the patient’s emotions with empathic responses: As described earlier, identify the patient’s primary emotion and express that you recognize that what the patient is feeling is a result of the information received. This is the place to use continuer statements such as “I can imagine how scary this must be for you.”

The success or failure of the interview for breaking bad news ultimately depends on how the patient reacts and how you respond to those reactions and feelings. There are many different ways in which a patient may react.

Some of the more common reactions include: disbelief, shock, denial, fear and anxiety, anger and blame, guilt, hope, relief, despair and depression.

S – Strategy and summary: Present treatment or palliative care options, being sure to align your information with what you ascertained (during the assessment of the patient’s perceptions) to be the patient’s knowledge, expectations, and hopes. Providing a clear strategy will lessen the patient’s anxiety and uncertainty.

The final stage of this process consists of organising and planning for the future, which will involve putting together what you know of the patient’s wishes, the medical scenario and the plan of management.

Initially an understanding of the patient’s problem list is essential. Through effective listening and reflecting the patient will know that you have an overall appreciation of their immediate problems. Honesty is very important and the Health Professional should not be unrealistically optimistic about the future. This will avoid future lack of trust or disillusionment from the patient.

This is often an appropriate time to formulate and explain a plan or strategy with the patient, which generally includes preparing for the worst and hoping for the best. Throughout this time the coping strategies of the patient should be identified and reinforced, and this will include identifying other sources of support for the patient and incorporating them. These may be other Health Professionals or close family/friends.

Before leaving the patient it is essential that a contract for the future is made, this will include either arranging a time to see the patient again or advising him/her whom they can contact.

(We can either include this or remove since much has been explained above)

In summary, although there are challenges in giving a patient bad news, a nurse can find satisfaction in providing a therapeutic presence during the patient’s greatest time of need. Communication skills play a very big and important role in breaking bad news.

Breaking Bad News using BREAKS protocol

Breaking bad news to patients is a delicate task that requires clear and empathetic communication. To simplify this process, we present the BREAKS protocol: Background, Rapport, Explore, Announce, Kindling, and Summarize. This mnemonic is easy to remember and can be implemented effectively.

Background: Before delivering bad news, thoroughly assess the patient’s disease status, emotional well-being, coping skills, educational level, and support system. Cultural and ethnic considerations are crucial. Create a conducive environment by turning off mobile phones, maintaining eye contact, and utilizing a co-worker’s assistance for transcribing the conversation.
Rapport: Establish a positive rapport with the patient while avoiding a patronizing attitude. Build trust through open-ended questions about the patient’s current condition. If the patient is unprepared for bad news, allow them to discuss their well-being before initiating the conversation.
Explore: Start the conversation by exploring what the patient already knows about their illness. This approach confirms the news rather than abruptly breaking it. Discuss their understanding of the disease, diagnosis, and potential conflicts between their beliefs and the diagnosis. Involve significant others in decision-making if permitted by the patient.
Announce: Provide a warning shot to soften the impact of the news. Use clear and straightforward language, avoiding medical jargon. Seek consent before announcing the diagnosis. Mirror the patient’s emotions to establish a connection, reflecting their embarrassment, agony, and fear.
Kindling: Understand that patients react differently to their diagnosis, exhibiting responses such as tears, silence, or denial. Allow space for the expression of emotions. Ensure active listening by engaging the patient with questions and encouraging them to recount their understanding. Avoid unrealistic treatment options and tailor responses to their questions.
Summarize: Conclude the session by summarizing the key points discussed and addressing the patient’s concerns. Emphasize future treatment and care plans, both emotionally and practically. Provide a written summary, as anxious patients retain limited information. Offer round-the-clock availability and encourage the patient to call for any reason. Maintain an optimistic outlook and, if requested, assist in sharing information with relatives. Set a review date and ensure the patient’s safety before they leave the room.

Checklist in the form of a table for breaking bad news about an illness:

Step	Description
1	Prepare well. Know all the facts before meeting the patient/family.
2	Introduce yourself and let others introduce themselves to you and state their relationship to the patient.
3	Review and determine how much the patient already knows by asking for a summary of events. Do not make assumptions.
4	Check that the patient/family wants more information and how much more. Offer an update and give them the option to stop at any point.
5	Indicate that the information to be given is serious. Allow a pause for the patient to respond.
6	Present the bad news in a direct and concise manner, using lay terms to avoid misunderstanding.
7	Sit quietly and wait for the patient to respond.
8	If there is no response after a prolonged silence, gently encourage the patient to share their thoughts.
9	Encourage the expression of feelings and provide a supportive environment.
10	Confirm and regulate the patient’s feelings, offering personal statements if appropriate to establish empathy.
11	Listen to concerns and ask questions, such as “What are your main concerns at the moment?” or “What does this mean to you?”
12	Provide more information if requested, systematically and using simple language.
13	Assess the patient’s thoughts of self-harm and take appropriate action if necessary.
14	Consider involving social workers, religious leaders, or other support systems if needed.
15	Wind down the session by summarizing the issues raised and discussing the next steps with the family.
16	Make yourself available for further discussions about the illness as needed.
17	Provide a follow-up plan to address additional questions or concerns that may arise.

Patients’ reactions to receiving bad news

Patient’s reactions to bad news may include denial, disbelief, shock, displacement (Refer to the section on bereavement)

When bad news is broken patients and their families will react in various ways:

Crying Denial
Blame Anger
Guilt Sadness
Bargaining Anxiety
A sense of loss Relief
Fear

Handling difficult questions

Some hints, (Faulker 1998)

Check the reason for the question – “What makes you ask that question?’
Show interest in the patient’s ideas – How does it appear to you?”
Confirm or elaborate – You are probably right’
Be prepared to admit you do not know
Empathize – Yes it must seem unfair to you’

Handling your own emotions

When breaking bad news, it is important that you are able to handle your own emotions as it is not an easy thing to do. Some things that will help include:

Self-awareness of your own abilities and limits
Team support
Clinical supervision
Reflective practice
Continue to develop your skills.
Remember it’s not your bad news

MCQ’s

According to the SPIKES protocol, what does the “S” stand for?
a) Set up the interview
b) Strategy and summary
c) Assess the patient’s perception
d) Address the patient’s emotions with empathic responses
Answer: a) Set up the interview
Which of the following is NOT a skill required for breaking bad news?
a) Listening
b) Empathy
c) Avoiding eye contact
d) Observation
Answer: c) Avoiding eye contact
What is the purpose of the BREAKS protocol for breaking bad news?
a) To simplify the process and make it more effective
b) To create barriers and obstacles
c) To confuse the patient and their family
d) To increase uncertainty and anxiety
Answer: a) To simplify the process and make it more effective
Patient barriers to breaking bad news may include:
a) Denial
b) Lack of knowledge
c) Feeling competent
d) Fear of causing pain
Answer: a) Denial
How should healthcare professionals handle difficult questions when breaking bad news?
a) Show interest in the patient’s ideas
b) Confirm or elaborate
c) Admit if they don’t know
d) All of the above
Answer: d) All of the above

6. Which step in the SPIKES protocol involves assessing the patient’s perception of the medical situation?
a) S – Set up the interview
b) P – Assess the patient’s perception
c) I – Obtain the patient’s invitation
d) K – Give knowledge and information to the patient
Answer: b) P – Assess the patient’s perception

BREAKING OF BAD NEWS Read More »

COMMUNICATION IN PALLIATIVE CARE

Communication (as a generic process) is a two-way process between two or more persons in which ideas, feelings and information are shared, with the ultimate aim of reducing uncertainties and clarifying issues.

Communication only becomes complete when there is feedback.

Types of communication

Verbal communication is the exchange of ideas through spoken expression in words. It is a medium for communication that can entail using the spoken word, such as talking face-to-face, on a telephone, or through a formal speech; similar communication can occur through writing.
Non-verbal communication involves the expression of ideas, thoughts or feelings without the spoken or written word. This is generally expressed in the form of body language that includes gestures and facial expressions and, where appropriate, touches.

NB: Both verbal and non-verbal communication is important in palliative care.

NB: Little communication actually takes place verbally, facial expressions, gestures and posture form most of our communication and are a graphic part of our culture and language. Studies show that during interpersonal communication 7% of the message is verbally communicated, while 93% is non-verbally transmitted. Of the 93% non-verbal communication:

∙ 38% is through vocal tones
∙ 55% is through facial expressions

Major skills in communication

These include the following

Listening
Checking Understanding
Asking Questions
Answering Questions

Listening

The first and perhaps the most important skill is to be a good listener. We have to be able to listen in order to understand the patient and family needs.

How well do we listen?

Show that you are listening by using the following techniques:

Pay attention to the person you are communicating to.
Use body language to show that you are paying attention.

NB: The following acronym can help to remember the key points about suitable body language that indicates paying attention: (ROLES)

ROLES:

Technique	Description
R – Relaxed	Stay relaxed and avoid tense or rigid body postures.
O – Open	Maintain an open posture, with arms uncrossed and relaxed.
L – Lean forward	Lean slightly towards the person to show interest and engagement.
E – Eye contact	Maintain consistent eye contact to convey attentiveness.
S – Sit near	Position yourself close to the person to create a sense of closeness and connection.

Tips for Effective Listening

Encourage the person to talk and show your engagement by nodding or using appropriate facial expressions.
Avoid behaviors that indicate boredom or impatience, such as yawning, fidgeting, or looking around.
Pay attention to the person’s non-verbal cues and reactions to better understand their feelings.
Use silence constructively and allow the person time to gather their thoughts without rushing them.

a. It is important not to interrupt when the person is speaking. Listen attentively and try to understand their verbal message.
b. Make an effort to remember accurately what the person has said.
c. Listen with empathy, putting yourself in their shoes and refraining from judgment.

Barriers to Effective Listening:

Distractions: Avoid being distracted by things like ringing phones or people entering the room.
Judgmental fixations: Refrain from imposing personal values or moral judgments on the patient, particularly religious beliefs.
Filtered listening: Be aware of how your own experiences, culture, and background may influence the way you interpret what you hear.
Prejudice and preconceived bias: Guard against judging others based on their appearance, tribe, gender, or profession.

Checking understanding

It is important to check that we have understood them correctly as it:

Let them know we have been listening carefully.
Lets them know we are trying to understand.
Gives an opportunity to them to think again about the problem.
Helps them to think about how to cope with the problem.

How do we check understanding?

Paraphrasing what the parson has said as key points during the conversation, by using words like; You have told me that
Clarifying what the person has said, by checking you have understood correctly using words like, ‘So, you mentioned you are worried about three things but school fees is the biggest problem, is that right?”
Reflecting by identifying the feelings of the person, using words like, It seems you are very worried about this
Summarizing: This happens during and at the end of the conversation. Expressing in brief and highlighting the key points of the story the person has told you.

Asking Questions

We ask questions in order to help the person:

Explore his/her problems more fully.
Think more about his/her situation and perhaps find a way of coping with their problems.
Explain what she already knows or understands about a situation i.e. facts about HIV/ cancer
See that we are trying to understand them and the problem they are facing.
Prioritize problems and thus help to focus the session.
Move at their pace and enable dialogue between the counselor and the person seeking help. How do we ask questions?

There are two kinds of questions:

Closed questions: These questions usually receive no more than a ‘Yes’ or “No” answer and are generally very specific e.g. Are you married? ’No’: ‘Do you have pain” “Yes’.
Open ended questions: These are questions which invite a person to talk and explain. They usually begin with; What, Where, When, Row? e.g. How did you feel when you were told your diagnosis? Open ended questions permit the person to choose how to respond, and examine the situation more clearly.

Points to remember when asking questions

It is helpful to use a mixture of open and dosed ended questions. Closed questions help to structure the session and identify facts, and open questions help the patient to express feelings, opinions and experiences.
Ask one question at a time, it is confusing to ask so many questions at a go.
Use key words from the person’s explanation to phrase another question.
Be tactful when asking personal or sensitive questions as it can take time to develop trust, and some questions can be asked later once trust has built up.
Use simple and clear language when asking questions.

Answering Questions

Points to remember when answering questions

Behind every question, there is usually a problem, worry or concern’.
Avoid answering “Yes” or ‘No’. It does not help the health professional to effectively understand the client’s situation or what the patient and family know about their illness.
When answering the clients’ questions or discussing the clients’ concerns, give information rather than advice or false reassurance.
Avoid suggesting to the patient and family what to do, but put forward a suggestion for discussion,
Always give accurate information. Be honest, it is alright to say. ‘‘I don’t know”.
Answer questions using simple and clear language. Complicated medical jargon can confuse the patient and their family.
After giving information, check whether the person has understood the information and ask the person what he intends to do about the situation?
Remember people ask questions when seeking for help.
Sometimes there is no obvious answer’ to give a question, such as ‘Why has God done this to me?” but listening to the patient and helping then, explore the feelings behind this statement can be very helpful to him/her.

Qualities and Attitudes for Effective Communication in Palliative Care

Effective communication is essential for providing quality care to patients and their families in palliative care. Care providers who possess the following qualities and attitudes are more likely to achieve positive outcomes:

Desire to help. Care providers should have a genuine desire to assist patients and their families.
Patience. Care providers should be patient and allow patients to express themselves at their own pace.
Honesty. Care providers should be truthful and sincere in their interactions with patients and their families.
Genuineness. Care providers should be authentic and free from pretense.
Openness. Care providers should be open-minded and receptive to different perspectives.
Dependability. Care providers should provide accurate and clear information to build trust and facilitate future communication.
Ability to put others at ease. Care providers should be able to create rapport and make patients feel comfortable.
Respect for others and their decisions. Care providers should treat each patient as an individual and respect their beliefs and values.
Positive attitude. Care providers should be non-judgmental, accepting, caring, empathetic, and respectful.

Principles for Effective Communication in Palliative Care

In addition to possessing the qualities and attitudes listed above, care providers should follow these principles for effective communication in palliative care:

Communicate with sensitivity. Care providers should be empathetic and compassionate when communicating with patients and their families.
Listen attentively. Care providers should allow patients to express their emotions and concerns without interruption.
Check for understanding. Care providers should confirm that patients and their families understand the information that is being communicated.
Consider cultural and religious factors. Care providers should be aware of the cultural and religious backgrounds of patients and their families and tailor their communication accordingly.
Hold family meetings. Family meetings can be a valuable way to gather information about patients’ needs and preferences, as well as to build rapport with family members.
Offer debriefing. Care providers who have provided care to patients who have died may benefit from debriefing to process their emotions and experiences.
Pay attention to nonverbal cues. Care providers should be aware of nonverbal cues, such as facial expressions and body language, which can provide important information about patients’ thoughts and feelings.
Use clear and simple language. Care providers should use language that is easy for patients to understand.
Ask open-ended questions. Care providers should ask open-ended questions to encourage patients to share their thoughts and feelings.
Summarize and clarify. Care providers should summarize and clarify information to ensure that patients and their families understand.
Address communication barriers. Care providers should be aware of potential communication barriers, such as language, culture, and disability, and take steps to address them.

Benefits of Effective Communication in Palliative Care

Effective communication is essential for providing quality care to patients and their families in palliative care. Here are some of the benefits of effective communication in palliative care:

Holistic needs assessment: Effective communication can help to identify and address the psychological, spiritual, social, cultural, and physical needs of patients.
Personalized information: Effective communication can help to ensure that patients receive information that is tailored to their individual needs and preferences, whether good or bad news.
Patient agenda: Effective communication can help to ensure that patients have the opportunity to share their concerns and priorities in conversations.
Truthful communication: Effective communication can help to ensure that patients receive accurate and essential information, which can promote understanding and trust.
Comprehensive care: Effective communication can help to facilitate referrals, interdisciplinary assessments, continuity of care, discharge planning, end-of-life care, bereavement support, conflict resolution, and stress management.
Resource guidance: Effective communication can help to advise patients on available resources to address various needs and concerns.
Sense of security: Effective communication can help to offer patients a sense of security, consistency, and comfort.
Family education: Effective communication can help to educate family members and care providers on pain management, distress, symptoms, and effective communication.
Improved relationships: Effective communication can help to enhance relationships between family members, care providers, and the community.
Information flow: Effective communication can help to ensure smooth information exchange among organizations involved in service delivery.
Lasting memories: Effective communication can help to leave positive impressions on family members during the grieving process.
Strong caregiver-patient relationship: Effective communication can help to foster a strong bond between caregivers and patients.
Dignity and autonomy: Effective communication can help to allow patients to make informed decisions about their remaining time.
Professional relationships: Effective communication can help to maintain effective professional relationships and uphold a high standard of care.
Communication as therapy: Effective communication can be utilized as a therapeutic tool to support patients in coping with their problems.

Consequences of Ineffective Communication in Palliative Care

Ineffective communication in palliative care can have a number of negative consequences, including:

Lack of accurate information: Failing to provide essential information to patients may exacerbate problems.
Lack of planning: Withholding the truth can lead to inconsistencies and hinder future planning by patients and their families.
Heightened fear and anxiety: Avoiding the truth can create a climate of fear, anxiety, and confusion instead of providing calmness.
Threat to patient care: Poor communication jeopardizes patient care, erodes trust, and increases staff stress.
Patient engagement: Effective communication is crucial for engaging patients and their families in their own care.
Lack of future preparation: Not communicating the nature and seriousness of an illness may prevent patients from planning for the future, such as writing a will or making arrangements for children’s care.

Special Considerations in HIV and AIDS

Diagnosis Impact: An HIV diagnosis brings the prospect of a life-threatening illness and the stigma associated with the disease.
Emotional Challenges: Strong emotions, such as anxiety, fear of rejection, fear of infecting others, anger, betrayal, shame, and worries about coping and family, affect effective communication in HIV and AIDS.
Disclosure of Status: Patients may struggle with disclosing their status due to concerns about respect, abandonment, or fear of family reactions.
Adherence to Treatment: Adherence to the prescribed drug regimen is crucial for successful antiretroviral therapy (ART), and effective provider-patient communication plays a vital role in promoting adherence.
Key Communication Factors for Adherence:
a. Pre-treatment education and counseling.
b. Information on HIV, its manifestations, benefits, and side effects.
c. Peer support involvement in treatment.
d. Psychosocial support to reduce stigma.
e. Culturally appropriate adherence programs.
f. Support groups, particularly in the African region, have proven successful in providing emotional and peer support to individuals coping with HIV and AIDS.

Barriers to Communication

Impairments: Illnesses may impact patients’ hearing or vocal capacity, hindering communication.
Limited Knowledge: Service providers with limited knowledge about HIV and AIDS may face challenges in effective communication.
Extreme Pain: Severe pain experienced by patients can hinder effective communication.
Conspiracy of Silence: Caregivers or patients may choose not to disclose important information, leading to communication barriers.

Communication in Children’s Palliative Care

In children’s palliative care, communication plays a crucial role as a child’s development and well-being are closely tied to the attention and care they receive. Children learn and grow through talking, playing, and observing others in their family and social environments. Establishing meaningful relationships with adults and peers is vital for their emotional and intellectual development. However, disclosing a diagnosis and ensuring adherence to treatment can present unique challenges in pediatric palliative care.

Good Communication Skills for Interacting with Children:

Active Listening: Paying attention and genuinely listening to children.
Showing Interest: Displaying curiosity and engaging with the child.
Age-Appropriate Communication: Adjusting communication style and language to suit the child’s developmental stage.
Non-Judgmental Attitude: Creating a safe space where the child feels comfortable expressing themselves.
Empathy: Understanding and relating to the child’s feelings and experiences.
Confidentiality: Respecting the child’s privacy and keeping sensitive information confidential.
Openness and Honesty: Being transparent with the child while using age-appropriate language.
Cultural Respect: Valuing and incorporating the child and family’s cultural beliefs and values.
Patience: Allowing the child ample time to express themselves without rushing or interrupting.

Principles for Answering Difficult Questions in Children:

Trustworthy Communication: Building a relationship of trust and security with the child before discussing sensitive topics.
Individualized Approach: Assessing the child’s existing knowledge and understanding before providing information.
Questioning Technique: Answering questions with further questions to clarify the child’s intent.
WPC Chunk Technique:
a. Warn: Preparing the child for potentially difficult information.
b. Pause: Allowing the child to process and indicate readiness to continue.
c. Check: Verifying the child’s understanding and willingness to proceed.
d. Chunk: Sharing information in small portions, checking comprehension along the way.
Honesty and Avoidance: Avoiding evasion or dishonesty when addressing difficult questions.

Key Aspects of Communication in Children’s Palliative Care:

Addressing Beliefs and Values: Discussing death and dying in line with the child and family’s beliefs, alleviating fear, and involving them in preparing for death.
End-of-Life Discussions: Openly discussing end-of-life issues and the child’s anticipated death with honesty and sensitivity.
Saying Goodbye: Providing opportunities for the child to say goodbye, express their feelings, and share their wishes.
Bereavement Support: Offering counseling and support to children during the bereavement process.

Note: Effective communication in children’s palliative care not only helps address their unique needs but also fosters trust, emotional well-being, and family involvement throughout the care journey.

Questions

Multiple-Choice Questions (MCQs):

Which form of communication involves the exchange of ideas through spoken expression or writing?
a. Verbal communication
b. Non-verbal communication
c. Both verbal and non-verbal communication
d. None of the above
Answer: a. Verbal communication

Explanation: Verbal communication entails the use of spoken words or writing to exchange ideas and information.

What percentage of non-verbal communication is conveyed through facial expressions?
a. 38%
b. 55%
c. 7%
d. 93%
Answer: b. 55%

Explanation: According to the document, 55% of non-verbal communication is expressed through facial expressions.

Which skill is considered the most important in effective communication?
a. Asking questions
b. Checking understanding
c. Listening
d. Answering questions
Answer: c. Listening

Explanation: The document emphasizes that being a good listener is the first and most important skill in effective communication.

What technique can be used to show that you are paying attention when listening to someone?
a. Nodding or using appropriate facial expressions
b. Interrupting to provide feedback
c. Looking around and being distracted
d. Avoiding eye contact
Answer: a. Nodding or using appropriate facial expressions

Explanation: To show that you are paying attention while listening, you can use techniques such as nodding or using appropriate facial expressions.

Which type of question encourages a person to talk and explain?
a. Closed-ended question
b. Open-ended question
c. Multiple-choice question
d. Yes/No question
Answer: b. Open-ended question

Explanation: Open-ended questions invite a person to share more information, thoughts, or feelings, allowing for a more detailed response.

What should be avoided when answering a question from a patient or discussing their concerns?
a. Giving advice or false reassurance
b. Asking more questions
c. Providing accurate information
d. Using complex medical jargon
Answer: a. Giving advice or false reassurance

Explanation: Instead of offering advice or false reassurance, it is important to provide accurate information and engage in meaningful discussions.

What should be checked after giving information to ensure understanding?
a. The person’s intentions regarding the situation
b. Their ability to remember the information
c. Their understanding of the information
d. Their reaction to the information
Answer: c. Their understanding of the information

Explanation: After giving information, it is important to check whether the person has understood the information provided.

Which of the following is not a barrier to effective listening?
a. Distractions
b. Judgmental fixations
c. Filtered listening
d. Prejudice and preconceived bias
Answer: b. Judgmental fixations

Explanation: Judgmental fixations are not listed as barriers to effective listening in the document.

In children’s palliative care, what is a key aspect of communication?
a. Open-ended questions
b. Closed-ended questions
c. Judgmental attitudes
d. Non-verbal communication
Answer: a. Open-ended questions

Explanation: Open-ended questions are essential for encouraging children to express their thoughts and feelings in palliative care.

What is the importance of effective communication in children’s palliative care?
a. To address children’s physical needs
b. To provide emotional support to children
c. To involve children in decision-making
d. All of the above
Answer: d. All of the above

Explanation: Effective communication in children’s palliative care is crucial for addressing physical needs, providing emotional support, and involving children in decision-making processes.

Fill-in Questions:

Good listening skills are crucial in effective communication because ____________.
Answer: they help understand the patient and family needs
Explanation: Good listening skills enable care providers to understand the needs of patients and their families, fostering effective communication.

When checking understanding, it is important to ____________ what the person has said in key points.
Answer: paraphrase
Explanation: Paraphrasing what the person has said in key points helps confirm understanding and allows the person to reflect on their thoughts.

Open-ended questions are beneficial in communication because they ____________.
Answer: invite a person to talk and explain
Explanation: Open-ended questions encourage individuals to share their thoughts, experiences, and feelings, leading to more in-depth communication.

Effective communication in palliative care helps identify and address patients’ ____________ needs.
Answer: holistic
Explanation: Effective communication in palliative care aims to address patients’ psychological, spiritual, social, cultural, and physical needs comprehensively.

The WPC Chunk technique involves warning the child, pausing to allow processing, checking their understanding, and ____________.
Answer: breaking information into small portions
Explanation: The WPC Chunk technique involves breaking difficult information into smaller, manageable chunks, checking comprehension along the way.

Providing opportunities for children to say goodbye and express their feelings and wishes is important in ____________.
Answer: children’s palliative care
Explanation: Allowing children to say goodbye and express their feelings and wishes supports their emotional well-being and involvement in the palliative care process.

Effective communication in palliative care helps foster ____________ between caregivers and patients.
Answer: a strong bond
Explanation: Effective communication creates a strong bond between caregivers and patients, promoting trust, understanding, and emotional support.

Care providers should use simple and clear language when ____________ questions.
Answer: asking
Explanation: Using simple and clear language when asking questions ensures that patients and their families can understand and respond effectively.

Ineffective communication in palliative care can lead to heightened ____________ and ____________.
Answer: fear; anxiety
Explanation: Ineffective communication can increase fear and anxiety in patients and their families, hindering the provision of quality care and support.

Disclosure of an HIV diagnosis can be challenging due to concerns about ____________ and ____________.
Answer: respect; abandonment
Explanation: Individuals may hesitate to disclose their HIV diagnosis due to fears of losing respect or being abandoned by their family or social circle.

COMMUNICATION IN PALLIATIVE CARE Read More »

Work related injuries and Fatalities

Work-related injuries and fatalities are any injuries or deaths that occur as a result of work activities. They can be caused by a variety of factors, including unsafe working conditions, unsafe behaviors, and health conditions.

Work-related injuries: These are injuries that occur at work or while on the job. They can range from minor cuts and bruises to serious injuries, such as amputations and spinal cord injuries.
Work-related fatalities: These are deaths that occur at work or while on the job. They can be caused by a variety of factors, including accidents, violence, and occupational diseases.

Types of Work-Related Injuries and Fatalities in the Nursing Sector

Nurses are at risk of a range of work-related injuries and fatalities, both physical and psychological. Some of the most common types include:

Musculoskeletal injuries: Nurses often engage in physically demanding tasks, such as lifting and transferring patients, which can result in musculoskeletal injuries like strains, sprains, and back injuries. These injuries can have long-term implications on a nurse’s physical health and may lead to chronic pain or disability.
Needlestick injuries: Nurses are at risk of accidental needlestick injuries while administering injections, drawing blood, or handling medical sharps. These incidents can expose them to bloodborne pathogens, including HIV and hepatitis, posing a serious health risk.
Violence and assaults: Nurses frequently encounter volatile situations and can be exposed to violence and assaults from patients or their family members. Verbal abuse, physical attacks, and threats are distressingly common in healthcare settings and can lead to both physical injuries and psychological trauma.
Slip, trip, and fall accidents: Nurses work in fast-paced environments, often with slippery floors and obstacles in their path. This makes them susceptible to slip, trip, and fall accidents, resulting in injuries such as fractures, sprains, or head trauma.
Work-related stress and burnout: Nursing is a high-stress profession with long working hours, high patient loads, and emotionally challenging situations. Prolonged exposure to stress can lead to burnout, mental health issues, and reduced job satisfaction, affecting both the nurse’s well-being and the quality of patient care.

Underlying Causes and Contributing Factors

Several factors contribute to work-related injuries and fatalities in the nursing sector:

Inadequate staffing levels: Insufficient staffing can result in nurses being overworked and overwhelmed, increasing the risk of errors, accidents, and injuries.
Lack of training and education: Insufficient training on proper lifting techniques, violence prevention, and stress management can leave nurses ill-equipped to handle the challenges they face, making them more vulnerable to injuries.
Workplace design and ergonomics: Poorly designed healthcare environments with inadequate equipment, improper ergonomics, and lack of safety measures can significantly increase the risk of injuries for nurses.
Workplace violence prevention gaps: Inadequate security measures, lack of policies addressing violence, and insufficient training on de-escalation techniques contribute to the prevalence of violence and assaults against nurses.

Preventive Measures and Interventions

To mitigate work-related injuries and fatalities in the nursing sector, several preventive measures and interventions can be implemented:

Adequate staffing and workload management: Ensuring appropriate nurse-to-patient ratios and workload distribution can reduce fatigue, stress, and the likelihood of errors or accidents.
Comprehensive training programs: Providing comprehensive training on safe patient handling, ergonomics, violence prevention, and stress management equips nurses with the knowledge and skills needed to mitigate risks.
Enhanced workplace safety measures: Implementing safety protocols, improving workplace design with ergonomic considerations, and ensuring proper equipment availability (such as lifting aids) can minimize the risk of injuries.
Violence prevention programs: Developing and enforcing policies and procedures to prevent workplace violence, training nurses in de-escalation techniques, and improving security measures within healthcare facilities can enhance nurse safety.
Mental health support and resources: Establishing programs that focus on mental health support, stress reduction, and promoting work-life balance can help nurses cope with the emotional demands of their profession and reduce the risk of burnout.

Factors Leading to Workplace Accidents in Uganda

Workplace accidents are a serious problem in Uganda, and they can have a significant impact on the health and safety of workers. There are a number of factors that can contribute to workplace accidents, including:

Lack of information or training in the job on health and safety. Workers who are not properly trained in health and safety risks are more likely to be injured in an accident.
Poor environment which can be noisy, hot, dark etc especially in night shifts. Working in a poor environment can increase the risk of accidents. For example, working in a noisy environment can make it difficult to hear warning signals, and working in a hot environment can lead to fatigue, which can increase the risk of accidents.
Lack of maintenance and inspection of the workplace. A poorly maintained workplace can be a hazard, and regular inspection can help to identify and correct potential hazards.
Inadequate supervision/support at work. Workers who are not properly supervised are more likely to make mistakes, which can lead to accidents.
Behavior or negative attitude of workers towards the working leading to negligence or non commitment which can easily result in accidents. Workers who are not committed to safety are more likely to engage in risky behavior, which can lead to accidents.
Lack of awareness of safety regulations at the workplace. Workers who are not aware of safety regulations are more likely to violate them, which can lead to accidents.
Lack of enforcement of workplace safety regulations. Even if workers are aware of safety regulations, they may not be enforced, which can lead to accidents.
Use of poor quality materials at work leading to accidents e.g. construction materials at construction sites. Using poor quality materials can increase the risk of accidents. For example, using construction materials that are not strong enough can lead to collapses, which can injure workers.
Employment of incompetent personnel in the field of work, thus lacking the appropriate skills. Employing workers who do not have the appropriate skills can increase the risk of accidents. For example, employing a worker who is not trained in how to use a particular piece of machinery can lead to accidents.
Heavy work load imposed on the worker contributes to workplace accidents because workers easily get tired both psychologically and physically thus risk of accident is high. Imposing a heavy workload on workers can increase the risk of accidents. For example, workers who are tired are more likely to make mistakes, which can lead to accidents.

Importance of Conducting Workplace Investigations

Workplace investigations are important for a number of reasons, including:

Help in identification of existing and potential hazards. Workplace investigations can help to identify existing hazards, as well as potential hazards that have not yet been realized.
Help in determining the underlying cause of the accidents. Workplace investigations can help to determine the underlying cause of accidents, which can help to prevent future accidents from occurring.
Recommends corrective action on the damage at hand/alteration. Workplace investigations can recommend corrective action that can be taken to prevent future accidents.
Ensure listening to the concerns of the workers and supervisors. Workplace investigations should ensure that the concerns of workers and supervisors are heard and addressed.
It demonstrate the workplace environments commitment to effective health and safety of the workers. Workplace investigations can demonstrate the workplace’s commitment to effective health and safety.
It improves employees’ morale and thinking towards health and safety. Workplace investigations can improve employees’ morale and thinking towards health and safety.
It improves the management of risks in the future. Workplace investigations can help to improve the management of risks in the future.
Investigation findings will provide essential information for insurers in case they need arises. Workplace investigation findings can provide essential information for insurers in case they need to assess the risk of a particular workplace.
Help in uncovering and correcting any breaches or alteration in health and safety legal compliances the organization have been unaware of. Workplace investigations can help to uncover and correct any breaches or alterations in health and safety legal compliances that the organization may be unaware of.

Six Steps in Conducting an Investigation

Immediate action: Make the area safe, preserve the scene, and notify relevant parties. Collect perishable evidence, such as blood samples, camera footage, etc.
Planning the investigation: Ensure that the investigation is systematic and complete. Consider the resources required, who will be involved, how long the investigation will take, and whether a team or a single investigator is needed.
Data collection: Gather data from a variety of sources, including people involved or witnesses to the event, equipment, documents, and the scene of the accident.
Data analysis: Analyze the data, paying close attention to the sequence of events. Identify the root and underlying causes of the accident, which may be due to human or environmental errors.
Corrective actions: Recommend actions that will reduce the risk of the accident happening again or correct the conditions that caused the accident.
Reporting: Communicate the findings of the investigation so that lessons can be shared. This can be done through formal incident investigation reports, alerts, presentations, or meeting topics.

Multiple-Choice Questions (MCQs):

Which of the following is a common type of work-related injury in the nursing sector?
a) Respiratory disorders
b) Vision problems
c) Musculoskeletal injuries
d) Gastrointestinal issues
Answer: c) Musculoskeletal injuries
Explanation: Nurses often face physically demanding tasks that can lead to musculoskeletal injuries like strains and sprains.

Needlestick injuries in nursing can expose nurses to:
a) Bloodborne pathogens
b) Respiratory infections
c) Allergic reactions
d) Skin infections
Answer: a) Bloodborne pathogens
Explanation: Needlestick injuries can result in the exposure of nurses to bloodborne pathogens such as HIV and hepatitis.

Which of the following contributes to work-related injuries in nursing?
a) Adequate staffing levels
b) Proper training and education
c) Safe workplace design
d) Inadequate security measures
Answer: d) Inadequate security measures
Explanation: Inadequate security measures contribute to the prevalence of violence and assaults against nurses, leading to work-related injuries.

Slip, trip, and fall accidents can result in injuries such as:
a) Respiratory disorders
b) Eye injuries
c) Fractures and sprains
d) Gastrointestinal issues
Answer: c) Fractures and sprains
Explanation: Slip, trip, and fall accidents can cause injuries like fractures and sprains in nursing.

Work-related stress and burnout in nursing can lead to:
a) Improved job satisfaction
b) Reduced patient care quality
c) Enhanced workplace safety
d) Increased work productivity
Answer: b) Reduced patient care quality
Explanation: Work-related stress and burnout can negatively impact the quality of patient care provided by nurses.

Which of the following is a potential preventive measure for work-related injuries in nursing?
a) Inadequate staffing levels
b) Insufficient training programs
c) Enhanced workplace safety measures
d) Lack of violence prevention programs
Answer: c) Enhanced workplace safety measures
Explanation: Implementing safety protocols and improving workplace safety measures can help prevent work-related injuries in nursing.

Lack of training on violence prevention can make nurses more vulnerable to:
a) Musculoskeletal injuries
b) Needlestick injuries
c) Work-related stress
d) Violence and assaults
Answer: d) Violence and assaults
Explanation: Lack of training on violence prevention can make nurses more vulnerable to violence and assaults from patients or their family members.

Which of the following factors contributes to work-related injuries in nursing?
a) Proper workplace design and ergonomics
b) Adequate staffing levels
c) Violence prevention programs
d) Insufficient training and education
Answer: d) Insufficient training and education
Explanation: Insufficient training and education on proper lifting techniques, violence prevention, and stress management can contribute to work-related injuries in nursing.

Prolonged exposure to work-related stress can lead to:
a) Increased job satisfaction
b) Improved physical health
c) Burnout and mental health issues
d) Decreased productivity
Answer: c) Burnout and mental health issues
Explanation: Prolonged exposure to work-related stress can lead to burnout and mental health issues among nurses.

Mental health support and resources for nurses can help:
a) Increase work-related injuries
b) Improve workplace safety measures
c) Reduce the risk of burnout
d) Enhance physical health
Answer: c) Reduce the risk of burnout
Explanation: Mental health support and resources can help nurses cope with work-related stress and reduce the risk of burnout.