Death. Mortality. End of Life. Something inevitable, yet rarely discussed and a source of intense discomfort for most. When mentioned, it is considered inauspicious and rude in many cultures. Death is an integral part of the workday for a critical care physician like me. But it was never a topic of discussion in medical school or training.
Death is inevitably encountered by every physician at some point and by every human. Then why aren’t we talking about this routinely? I know your doctor should be bringing this up. The funny thing is, as health care providers, we are still fumbling with the topic ourselves. We are not routinely trained to talk about something we are supposed to prevent. Until our system incorporates death as a mandatory topic to be discussed, I urge you to be proactive.
If we work so hard to create a life we love, why not consider how we would like to die. Life and death both can turn out vastly different from what we expect, yet we make every effort to create a life we value. If asked how one would choose to die, the most common response is: “I want to die in my sleep, at home, surrounded by my loved ones.” Yet, hospitals are proof that this doesn’t always happen.
People want their health care decisions to reflect their core values. When a family member is hard-pressed to make decisions at the end of life (for a patient unable to do so for themselves), a prior discussion can at least point them in the right direction. Better yet, a “living will” can give specific guidance about our preferences regarding treatment choices. Appointing a “POA for health” or “health care proxy” can ensure a loved one is entrusted with the responsibility of making decisions that mirror your values when you cannot do so yourself.
In the United States, where there are clear-cut guidelines and laws in place, it is only a small number of patients (usually the chronically ill) who actually make their wishes known. In India, patients rely on the trust, relationship, and conversations between the doctors and family to guide care at the end of life. Legality is still vague.
Expression of grief by patients and families can take on many forms. Slowly accustomed to the spectrum of human grief, I have learned to recognize patterns.
Guilt and making up for lost time by continuing life support for a helpless family member, even when there is little hope. The inability to face one’s own mortality by asking for every medical test and intervention available.
Families stating that their loved one is a “fighter” and wouldn’t want to ever “give up.” Interpreting the preparation of end of life care as pulling the plug and giving up. For me, dealing with the strongly ingrained belief “death is failure” is both draining and emotionally exhausting.
Is fighting a battle at the end of life a courageous struggle or a resistance, lack of acceptance, and fear of facing the inevitable? We face these issues because we never ever talk about death until we absolutely have to. Maybe, even if we did make every effort to do so, it would still be incredibly painful and hard. After all, it is difficult to face our own mortality, let alone prepare for such a final event in reality. We can at least begin to try.
Historically, one might have gone through the dying process at home, either due to old age or sickness. Increasingly, this is becoming the exception rather than the rule. Most people are rushed to the nearest health care facility at the earliest sign of pain and distress.
We draft wills for our real estate and valuables. What about our most valuable asset, our body, the only constant space we inhabit throughout our lives? When we make an effort to eat healthy and work out, we invest in our health, quality of life, and living well. When we discuss death, learn about palliative care, and learn more about the choices available at the end of life; we invest in our end of life experience and dying well. Wellness is more than living well; it includes dying well. The choices we make will, to a large extent, determine both our quality of life and death.
My job is to ease suffering, as a health care provider, not simply “save lives.” I am thankful and relieved when patients die well under my care. Palliative care, an emerging field, is providing non-aggressive care to patients who opt for it.
A large chunk of my day involves talking with dying patients and their families. Even though we save lives, it can be far more gratifying to care for someone dying well with grace. Much more than it is to connect more devices to a survivor of resuscitative efforts with little hope of meaningful recovery. Doctors are trained to alleviate discomfort and resuscitate those very ill. Doctors cannot prevent people from dying. Globally, the phenomena of death is not something we have been able to accept gracefully.
It is a privilege to be by the bedside of someone dying. It is humbling to have family meetings that help loved ones better understand what the prognosis of a critical illness might be. It is enlightening to learn how my patient lived their life and how they might want to die. It is a joy when I am able to provide care that is in sync with the core values of my patient. It is not giving up hope. There is dignity and grace in dying well. But first, let’s talk about death — please.
Sonali Mantoo is a critical care physician.
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