Sigmund Freud had said that we are all convinced of our immortality. Discussing death is considered macabre, ghoulish and in morbid taste. But the unexpected deaths due to the pandemic are making us review our “this cannot happen to me” certitude.
A good death refers to one free from avoidable distress and suffering for the patient, family and caregivers; generally in accordance with their wishes; and reasonably consistent with clinical, cultural and ethical standards. Death should not be considered an isolated event — a moment in time.
It is a process, and like all journeys, we need to prepare by relinquishing roles and responsibilities, completing financial arrangements and saying goodbye. Wherever possible, should it not behove the attending clinician to consider patient preferences for treatment, a specific dying process, pain-free status, emotional well-being and dignity should be ensured.
To quote Shakespeare, “O, let him pass. He hates him. That would upon the rack of this tough world. Stretch him out longer.”
A circle of support is relevant not just at the moment of death, but throughout the dying process. The journey towards death is as much about getting to know oneself as during any part of life. Learning to recognise our needs, be they medical, emotional or spiritual, becomes more relevant when we are closer to death. Earlier recognition is a major part of enabling a good death. Death is an inevitable part of life. Having the option to influence quality of death may generally suffice. Some wish to hasten the process. Several countries have laws allowing doctor-assisted active euthanasia. At no point in history have people lived as well as the present generation. So why not focus on the quality of our death as well?
A bad death is usually associated with violence, pain, dying alone, being kept alive against one’s wishes, loss of dignity, and being unable to let one’s wishes be known. Most individuals would prefer to die at home, at peace, with family members present. Do we want to be kept alive at all costs or do we not want to be resuscitated? Knowing our wishes makes it easier for the family and the healthcare provider.
Devastating loss
COVID-19 deaths could be considered a “bad death”. It is devastating for the bereaved kin, whose grief is compounded by social isolation and inability to provide practical and emotional support.
The associated high stress is due to financial problems and worries about the health and quarantine of the whole family. Physical discomfort, difficulty in breathing, social isolation, psychological distress, lack of preparation, treatment falling short of expected respect and dignity, and lack of privacy supplement occasional ostracism.
The family members are deeply distressed when they cannot bid goodbye, when the death is unexpected, when it is perceived to be preventable and treatments did not comply with the patient’s preferences. The last is often discounted particularly in a pandemic. Many of the face-to-face interactions that support older adults as they mourn, including time-honoured religious rituals and funeral services, are often prohibited, compounding the problem.
When in active neurosurgical practice, I had personally managed over 2,500 deaths. Primary importance was always given to the quality of life. Patient and family wishes took precedence over using tomorrow’s “cutting-edge technology”. Retrospectively, viewing things from the quietude of retirement, I wonder if the quality of death should also have been specifically discussed. In the 2015 Quality of Death Index Report by The Economist Intelligence Unit, India was ranked 67th among the 80 countries studied. Why should enabling good death be confined to palliative medicine specialists, a truly endangered species in India?
Should the “beneficiary” and the healthcare provider not discuss this every time along with management options? Many countries have death cafes where people drink tea, eat cake and discuss end-of-life care and death. Today, we have the choice of a good death. It is essential that we make a “living will” when we are in good physical and mental health.
Quality of death is as important as quality of life.
(The author is a past president of the Neurological Society of India)
drkganapathy@gmail.com
