Saturday, July 02, 2022

My mother had a brief illness and died when I was 8 years old. Several months later, I had the same illness along with complications. I don’t know how close I came to death, but I remember my poor father not looking too good. I mention this personal story because for months afterwards I had nightmares about dying. And I suppose that fear remained to some degree with me even later. I suspect it influenced my decision to become an oncologist so I could face my fear.

It is a natural thing to fear one’s end. But what is it that one truly fears? A movie some years ago, “The Bucket List,” recounts the story of two men with cancer who spend their remaining time doing fantastic things—skydiving, race car driving, visiting the Taj Mahal. Maybe this is good for billionaires, but I have almost never seen it in patients. Every patient wants life to return to “normal”—to eat a good meal with appetite, to sleep soundly without pain, to go back to work, to go shopping, to be with one’s family, to perform one’s bodily functions comfortably, to have marital relations.

I am reminded of an incredible commentary by my colleague Kenneth Prager of Englewood, which always makes me choke up and tear, in which he discusses the bracha of asher yatzar, the blessing we make on going to the bathroom, which we don’t appreciate as children, but becomes meaningful when we reach middle age and have difficulty with urination and bowel movements. For the cancer patient, it is a terribly meaningful plea and a reason for true thanksgiving. https://daat.ac.il/daat/kitveyet/assia_english/prager.htm

Many of us are familiar with the five stages of grief/loss described by Elisabeth Kubler-Ross, the last of which is acceptance. Her formulation has never had empirical validation but nonetheless the idea of acceptance is a critical one. Holly Prigerson grew up on Long Island. She went to Barnard as an undergraduate before going to Stanford for a PhD in sociology, and then to Yale for a postdoc and junior faculty position in the epidemiology of aging. From there, she went to Dana-Farber in Boston to join perhaps the best palliative care medicine program in the country before being recruited to Cornell where she now heads the Cornell Center for Research in End-of-Life Care, the leading research group in the country on this important topic.

Holly and her husband Paul Maciejewski have separated acceptance into two types—cognitive acceptance and emotional acceptance. The former is easier to achieve and may actually interfere with the second. Nonetheless, they acknowledge that in the end, as described by Kubler-Ross, the vast majority of patients do indeed achieve some level of emotional acceptance and therewith peace.

But do they achieve acceptance in tandem with their loved ones? More often than not, the patient will accept significantly sooner than the spouse/child, and thus decisions regarding aggressiveness of care, do-not-resuscitate orders, referral to hospice and palliative care, may follow family desires rather than patient desires. This is not necessarily bad—end-of-life involves the family as much as the patient and it is important that they come away thinking that everything has been done even if, in truth, some of it is futile.

The development and increasing proficiency of the palliative care team has been a true addition and blessing to end-of-life for cancer patients. Much of the fear and terror of terminal patients derives from fear of pain, other symptoms and quality of life. Thus, a specialty whose skills are directly geared to dealing with precisely these issues can ease the pressure on the oncologist, but more importantly on the patient and his/her family. Unfortunately, there is often reluctance to refer to palliative care till very late in the patient’s course since it can be seen as “giving up.”

How hard can or should one fight as the end nears? Of course, this is an individual decision. But in my experience, and I think the literature bears this out, desperation measures rarely make meaningful contributions. Indeed, desperation chemotherapy is more likely to hasten the end and impair quality of life with its side effects than to ameliorate the situation.

A true acceptance on both cognitive and emotional levels at some point is a blessing. I am aware of the Talmudic dictum “Even if a sharp sword is against one’s throat, he should not give up asking for mercy.” (Berachot 10a). But perhaps part of emunah is accepting that a peaceful end is part of God’s mercy.

Finally, I often hear people say, upon hearing that someone died suddenly or in his sleep, how lucky he was to have expired that way. It is true that the absence of pain and disability is a blessing. But there is also the absence of an opportunity to make peace with one’s friends and family and with God, to anticipate the end of the story, to say goodbye. Perhaps there is no perfect way to end, and anyway we don’t get to choose, but knowing, anticipating and accepting the end can be a blessing, too.

Alfred I. Neugut, MD, PhD, is a medical oncologist and cancer epidemiologist at Columbia University Irving Medical Center/New York Presbyterian and Mailman School of Public Health in New York.

This article is for educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment, and does not constitute medical or other professional advice. Always seek the advice of your qualified health provider with any questions you may have regarding a medical condition or treatment.

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