I have for months carried around in my “to read file of articles”, one that appeared in the Journal of the Royal College of Physicians Edinburgh (2016; 46: 281-7) titled “The way we die now: a personal reflection”. Losing my father, Dr. Krishnamoorthy Srinivas, a medical practitioner of some renown, to the icy hands of death last month, finally made me pick up and read this article by Dr. S.O’Mahony, a gastroenterologist in Cork University Hospital. In the article, which draws on his eponymous book, he talks of the contradictions that exist “in the modern deathplace”.
As a physician, Dr. Mahony says, “I deal with death in many guises; from the rapid and messy death in the emergency department resuscitation room, to the slow, lingering death from liver disease in the general ward, to the high tech death in the Intensive Care Unit. Some of the deaths I see are undignified: the dying have not accepted or understood their situation, the truth denied to them by well-intentioned relatives and doctors. Their death has been stolen from them. Death in modern hospitals has the faint whiff of an industrial accident, a failure of medical intervention”.
Subjective concepts
While there is no prescribed ideal, we often speak about “a good death” and “death with dignity”. However these are highly subjective and poorly understood concepts. Modern hospitalisation does rob death of its significance and grandeur, with many people dying after a long period of syringe driver-induced oblivion. Henry James called death “the distinguished thing”. But can death converted into a medical process can ever be “distinguished”?
When we speak of a good death, we want it to be “at home”, “free of pain”, “surrounded by family”, in “an atmosphere of dignity and calm”. Yet, the majority of people, even with chronic and life-threatening disease, are unaware they are going to die. An English survey of people at the end of their life showed that less than half of those asked knew they were dying.
So what will help most of us achieve a good death?
Bravery is the first requirement on the part of the physician and the treating team, to acknowledge the imminence of death and to discuss the handling of the inevitable when it happens. On the part of the family, to not sweep the diagnosis and prognosis under the carpet; to share it with their loved one candidly but with sensitivity and empathy. Both professionals and families often balk at the idea of discussing the end of life. Atul Gawande says: “Patients die only once. They have no experience to draw on. They need doctors and nurses willing to have hard discussions and say what they have seen, who will help prepare for what is to come.”
With the question, “Why the hesitation to be brave”, Dr. Mahony observes rather candidly: “Doctors increasingly see themselves as service providers, a role that does not encourage Difficult Conversations. Consumerism, the fear of litigation and over-regulation have conspired to create the customer-friendly doctor who emerged when the doctor patient relationship was recast in a quasi-commercial mould. It is easier in the middle of a busy clinic to order another scan than to have the Difficult Conversation”.
Attitude is the next one. Dr. Mahony says, “We are frail and vulnerable animals, yet we have come to believe that everything that happens to us — including death — is our fault, our doing, our responsibility”.
We live in a ‘fixit’ world, where the common expectation has become that any disease or dysfunction in any organ can either be fixed or replaced by modern medical treatment. When the attitude is “beat it”, “conquer it”, or “fix it”, one seldom stops to ask the question “at what cost?”, not just material, but also physical and emotional. Attitude, like bravery, is a requirement for a good death.
Planning is the third requirement. Knowledge that one is approaching the end of life must lead ideally to Advanced Care Directives: an action plan that is drawn up, ideally authored by the patient. An early decision on hospitalisation is DNACPR, or Do Not Attempt Cardio-pulmonary Resuscitation. This decision requires ideally the consent of the patient (if compos mentis ) as also familial consent. And the treating doctor and team should be convinced that the end of life is being reached and CPR followed often by mechanical ventilation is unlikely to be of any benefit. The DNACPR decision is vulnerable to medico-legal challenges and needs to be reviewed periodically.
Needed, a care plan
Apart from this, every patient at the end of life needs a care plan that will address her/his medical, psychological, social and spiritual needs. Doctors are wary of being accused both ways: of being too interventionist and aggressive in treatment on the one hand, and too hasty in choosing the palliative pathway on the other.
How doctors do it
So, do doctors die the same way their patients do? Apparently not. Surveys of doctors in the end of life have shown that most refuse active intervention — CPR, Mechanical Ventilation, PEG feeding and so on. Doctors are of course empowered by their knowledge of human physiology and in most instances of what happens at the end of life, having borne witness to it in their patients.
In my own father’s case, a few aspects were key to his relatively peaceful end. One was his belief that at 84 years he had lived a full life. Then, his physician, also over 80 and a close friend, was aware of (and shared) his beliefs in this regard. Another factor was my father’s lifelong disdain for aggressive medical and surgical procedures; “cure sometimes, control often, comfort always” was his motto in his own clinical practice. Then, our family was able to absorb his beliefs and act according to his wishes. And an empathetic medical team could support him at the end of life without breaching the informal Advanced Care Directives.
With the status of the “living will” remaining unclear thus far, the end of life remains challenging for those with terminal illness, elderly with chronic diseases and multi-morbidity and the physicians treating them. While medical science has advanced in order to give us a good life, “a good death” remains an elusive ideal.
T he author is a senior consultant in behavioural neurology, neuropsychiatry and neurorehabilitation. esk@neurokrish.com
