The COVID-19 pandemic has shown the hidden face of our health system, which was ill-prepared to meet the expectations and needs of the population in end-of-life care in long-term care facilities, emergency rooms and intensive care units. Many of us have a loved one who died during the pandemic, alone, isolated, unable to say their last goodbyes to their family. Many of us experienced the pain of not being able to accompany them in their last moments, as well as the lack of support to overcome the grief. But even before the pandemic, dying alone and deprived of care was the experience of many socially isolated people.
We sometimes hear people wishing for a “good” death. But what does it mean exactly?
What research tells us
A recent systematic review of 13 articles comprising 407 studies looked at this question.(1) The points of view of dying people, grieving family members and healthcare professionals were collected.
The review revealed that most of the characteristics required for a good death do not require expensive medical infrastructure or specialized knowledge. The review identified 11 conditions for a good death:
1. Dying in the desired place, usually at home, a place that offers familiarity, comfort and connection with loved ones.
2. Being relieved from physical pain is considered to be a characteristic of excellent end-of-life care by all stakeholder groups surveyed. Due to cultural or religious considerations, however, some populations prefer that the pain not be fully relieved, as they see some strength in enduring it.
3. Being relieved of psychological and emotional distress, for example no longer having fears related to financial difficulties or the unavailability of care.
4. Being surrounded by loved ones and benefiting from their support is considered an essential condition for a good death, both for the dying person and for family and friends, regardless of the cultural context.
5. Making therapeutic decisions independently, such as choosing where and when to have treatment.
6. Avoiding therapeutic obstinacy and unnecessary interventions.
7. Not being a burden on others.
8. Having the right to request medical assistance in dying in order to maintain control.
9. Communicating effectively with health care professionals is an important characteristic and reflects the desire for friendly, compassionate, accessible, honest and clear interactions, free from medical jargon.
10. Performing cultural, religious or spiritual rituals is important for the dying person and for caregivers.
11. Being lucid and aware of the imminence of death allows the dying person to say goodbye, to complete unfinished tasks, to put in order their financial and testamentary affairs. Nevertheless, some studies have found that the reverse is also valid, as being unaware of impending doom reduces the risk of psychological distress, which is considered by some to be a condition for a good death.
Although the characteristics identified are common to a large number of people, the meaning of a good death is different for each of us depending on our personal background, culture and religion.
A good death should not become a list of boxes to check, nor put pressure on the dying person or on the family who may feel they have failed to offer a "good" death to their loved one.
This is why it is important to discuss with your loved ones the care you would like to have at the end of life.(2) In order to live this moment as peacefully as possible, you can choose certain treatments or palliative care offered in a care setting or at home that suits your values and wishes. Perhaps also being accompanied by a "death doula" can be part of the solution for you.(3)