When the 80-year-old man died in the early morning hours, was he alone? Or was he with his wife or perhaps a grandson to hold his hands? I suppose not. Hospitals are banning visits.
When the 51-year-old woman died late at night, how long had she been separated from family and friends? Imagine drawing your last breath with no loved one to feel its warmth. And in a haze of confusion and agony, did her family say reassuring words with the dread of goodbye, as they watched her disappear through the hospital doors?
This new coronavirus has upended our daily life. The trivial grocery trip is now momentous. The forgettable errand to the drugstore is now ceremonial. There is apparently a smart way to clean our evidently gross smartphones.
Almost 4 weeks into this quarantine, perhaps no issue has been turned on its end with such cruelty as dying in isolation. The virus has forced us to confront up close a difficult subject: what do we do when there’s nothing more to do?
We need to talk about death and dying. The virus is forcing us to do better at holding these conversations – and fast.
In this extraordinary new normal, extraordinary infection control measures are for everybody’s protection. Limiting or outright barring hospital visits makes sense. Few would disagree.
But imagine the patient with no hand to hold, the loved one wishing to pull up a chair at bedside, the long-time friend desperate for clarity, and the health workers, many still young residents, with the profound responsibility of deciding who gets a ventilator. Is the psychological and emotional cost paying for the benefits of physical distancing? (READ: Grieving from a distance: Coping with loss due to coronavirus)
Philosophy and later medicine, as well as public health, have long debated what adds up to a good life. We talk less about what constitutes a good death.
The absence of clarity presents enormous challenges to health service delivery. Quality end-of-life care, including relief from unnecessary suffering as well as fostering of emotional and spiritual wellbeing, is critical to people-centered and integrated health services – pillars of universal health care.
How we face the end of our life is very much part of how we value living it. Life ends at death, not at dying. But our health care system and professional associations have struggled to hold genuine conversations about death and dying – or have kept silent about them.
This is unfortunate because these discussions can offer relief. Despite a popular misconception, talking about end-of-life issues with patients and their families does not lead to distress.
In a study among patients with cancer, published in the Journal of the American Medical Association, end-of-life discussions were linked to lower rates of ventilation, resuscitation, or admission to the intensive care unit. In a separate study, published in the Journal of Pain and Symptom Management, family members who’ve lost loved ones experienced less depression and less complicated grief when health care workers held end-of-life discussions. These conversations enable better quality of death. (READ: How to comfort a loved one who may have coronavirus)
We need these conversations about death so that we might live a dignified life. A decent health care system has the job of enabling us to pursue completeness and fullness. Our very neediness and weakness in a hospital bed might limit our capabilities to pursue our preferences. However, the burden is on the health care system to ensure that our vulnerability does not give rise to confusion or cruelty, with family members or clinicians effectively playing god.
Here in the Philippines, we take pride in family bonds. It is not uncommon for health care workers to involve our family in decision-making even when we are coherent and capable to independently make those choices. But quality of life with our family is no indication of the quality of death we wish to have for ourselves.
Most of us would want to hold these conversations but much less of us have actually started. I also suspect that we would feel relief if others initiated the dialogue.
There is no exhaustive list of questions on end-of-life care. Some reliable sources are online. Some hospitals have their own, and this is a good sign. We are not talking here about cold advance directives or perfunctory do-not-resuscitate orders. We are not talking here about a notarized legal representative. These are bureaucratic requirements.
What we need is an uncomfortable and frank but genuine and supportive conversation about death and dying.
We can open the conversation with respect, kindness, and honesty. We can keep it simple: “I care about you, and I don’t know what’s ahead. If things get worse and you are hospitalized, I want to be sure I honor your wishes. Maybe this is a good time to talk about what you want and don’t want. If I have to make a decision for you, I want to be sure that it is a decision that you would want for yourself.”
What matters to you, what gives your life meaning, what would you like to bring with you if you are hospitalized, what concerns do you have about treatment, how involved do you want loved ones to be, who do you not want involved in the decision-making, what would you like loved ones to know, how long do you want medical care – these and many others can start the difficult but necessary dialogue.
If isolation is even a remote possibility, these talks should be held before going to the hospital. If safe and possible, the discussion can – and should – continue even when separated at the hospital doors. Use your phone. Write on a piece of paper.
Dying in isolation is terrifying, but dying alone seems something else entirely – and is probably worse. We can honor the life of our loved ones by openly and lovingly talking, together with them, about their dying. – Rappler.com
Dr Ronald Del Castillo is professor of psychology, public health, and social policy at the University of the Philippines Manila. The views here are his own.