Conversations about death and dying are difficult in most African cultures, possibly because many of us believe that the power to give and take away life belongs to our creator. In terminal illness, where the focus shifts from cure to treatment for comfort and quality end-of-life experiences, the quality of death and dying become critical outcomes of care for both multidisciplinary teams and family members. Bereaved caregivers are therefore a key part of the health system: they provide the care as well as data on this very important outcome.
IAHPC Board Member Eve Namisango, who coordinates the African Palliative Care Research Network (APCRN) and was central to the African Palliative Care Association’s Atlas for Palliative Care, describes supporting Ugandan caregivers after a loved one’s death.
Support after death is a surprise
As stipulated in both the WHO and IAHPC definitions, palliative care continues after death to address grief and bereavement. In my experience, most carers believe that once their loved is dead, their relationship with palliative care services ceases. This should not be the case, but it may explain the surprise many express when contacted for grief and bereavement support. Despite their surprise, the majority are pleased to talk about the death and dying experiences of their loved ones. Some see it as an opportunity to honor the dead. For example, caregivers have expressed admiration for their loved one, who showed joy, maintained dignity, and resisted suicide despite experiencing severe health-related suffering.
“I was surprised to get a call from you, I thought when a person is dead, they are dead and that is it. That said, I am glad you called me; it was great talking about my husband’s quality of death and dying. He had refused to come in for palliative care but later said: let me go and contribute to something which will help the future generation. I hope what I have shared informs quality improvement. I am glad I have fulfilled his wish.” — Bereaved caregiver
Changing perception augments appreciation
Rating the quality of death and dying seemed a novel concept to most of the bereaved caregivers, who posit that nothing can ever be good about death. Palliative care changes perceptions about this difficult topic as the goals of care in terminal illness shift to comfort, quality death, and dying experiences, as well as good bereavement outcomes. Through this lens, bereaved caregivers begin to appreciate quality of death and dying as an important outcome of care and a reward for their hard work in caring for terminally family members.
“When you care for someone and they never cure, you feel so disappointed. But now I appreciate that I did a good job because my loved one died happy and pain-free as he transitioned to the next world.” — Bereaved caregiver.
A question must be asked: What matters to the dying and their beloved ones at the terminal phase? Family caregivers wish to have a clear conscience that the dead are not angry if caregivers failed to take give them the best care, or did things against their wishes when their capacity for decision-making diminished, or simply gave up on them.
What matters? I believe that the patient must die pain-free. They yearn for death to escape pain if it is not well controlled, so pain relief should be prioritized.
A death is good if:
- the patient has received quality care for good symptom control.
- the patient died in the presence of their loved one.
- the patient lived long enough to achieve their goals in life.
- the patient died at peace with their creator.
- the patient had a visibly peaceful transition to the next world, such as dying with their eyes closed and a peaceful expression.
- the patient’s life is not prolonged by artificial means when it would lead to prolonged suffering when death is clearly imminent.
The most pressing challenges faced by caregivers include: catastrophic out-of-pocket costs associated with care; how to handle feeding withdrawal for dying patients; coping with common close-to-death symptoms; and, in the case of home deaths, handling a corpse.
Lastly, I will talk about my experience in interviewing bereaved caregivers about the quality of death and dying of their beloved ones.
I must confess that it is quite distressing, but also very rewarding to undertake each meeting with compassion. Being ready to provide bereavement care and support in a crisis includes taking a box of comforting hankies, holding space for crying during the interview (it is natural), stopping the interview if the respondent goes into a crisis, then, if they wish to resume, continuing the interview to completion.
Eve Namisango is a board member of the IAHPC. You can see her bio in the IAHPC website.