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:

  1. Fear of experiencing pain and suffering during the dying process.
  2. Fear of not being able to cope with the impending death.
  3. Fear for the well-being and survival of loved ones after their own passing.
  4. Fear of the unknown and what lies beyond death.
  5. Fear of leaving unfinished tasks or responsibilities behind.
  6. Fear of being alone in the house once their loved ones are gone.
  7. 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

  1. Acknowledge that death is a natural part of life, and individuals should be allowed to pass away peacefully and with dignity.
  2. Provide adequate pain and symptom management throughout the dying process.
  3. Understand that palliative care neither hastens nor postpones death but recognizes dying as a normal process.
  4. Deliver palliative care in a culturally sensitive manner, respecting individual beliefs and practices.
  5. 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.

  1. 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.
  1. 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.
  1. 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.
  1. 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.
  1. 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.
  1. 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.

  1. Encourage ongoing communication with the patient, even when they are too weak to respond.
  2. Reduce unnecessary medications while ensuring effective pain and symptom control.
  3. 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
  1. Breathing ceases entirely.
  2. Heartbeat and pulse stop.
  3. Patient is unresponsive to shaking or shouting.
  4. Eyes may be fixed in one direction, with eyelids open or closed.
  5. Eyeballs become soft.
  6. Skin tone changes.
  7. 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:
  1. Explain the situation to the family and encourage them to allow the patient to rest.
  2. Maintain a familiar environment for the patient.
  3. Promote therapeutic touch within the family.
  4. Encourage family members to be observant.
  5. If the patient is experiencing pain, continue pain management without discontinuing analgesics, while monitoring relief carefully. Adjust drug dosages if needed.
  6. Respect the patient’s wishes.
  7. Keep the patient’s mouth clean and moist.
  8. 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:

  1. 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.
  2. 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.
  3. 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:

  1. Rectal administration

    • Morphine suppositories may be available.
    • Long-acting morphine, such as MST given every 12 hours, can be used rectally.
  2. 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.
  3. 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:

  1. Allow the family to carry out rituals immediately after death according to their customs or religion.
  2. 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.
  3. In Africa, burials often occur within 48 hours, particularly for Muslims who must be buried before sunset on the day they died.
  4. 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.
  5. Friends and relatives may accompany the body for the first 24 hours, providing prayers, hymns, and comfort for both the body and the family.
  6. Some cultures may place food and precious belongings in the coffin.
  7. Burial may take place in the ancestral home or the garden.
  8. Cremation is rare in some African countries, and the depth of bereavement may vary across cultures.

Special Considerations in HIV and AIDS:

  1. Patients who are dying should receive a similar approach to care, regardless of their specific disease.
  2. Simplify the medication regimen to focus only on medicines needed for symptom control, which may involve stopping antiretrovirals (ARVs) or anti-TB treatment.
  3. Home-based care services and HIV support services play a crucial role in providing care.
  4. Ensure that all caregivers are aware of universal precautions, especially when handling bodily fluids.
  5. 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.
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