A few weeks ago in clinic, I informed two new patients with advanced cancer that their disease was incurable. I am a strong believer in being open and pretty blunt about such information—I think most patients can handle it reasonably well. They may not like it, but it is what it is. And if it is tempered with a sense of how we can deal with it and that their survival will be reasonable, the patients are usually okay with the news.
Of course it can still be a bit draining on the clinician, in this case me, and it can sometimes make my mind wander. The next day, my son Eitan called to say goodbye as he departed on El Al for a flight to Israel to attend a friend’s wedding. When he asked if I wanted anything, I realized that we have enough kiddush cups. So I suggested that he bring back two small bags of Israeli soil for his mother and me to place in our graves. He was a little taken aback at this, so I guess he had never heard of this Ashkenazi custom.
I am an avid reader of the Yiddish stories of Sholom Aleichem, the Peretz brothers and other writers of the shtetl, and the small bag of soil from Israel maintained in the home for the burial ceremony pops up repeatedly in their stories. One wonders how all these peasants in Galicia, Lithuania and Romania managed to obtain it all the way from then-Palestine. The soil was a staple on the carts of the itinerant peddlers that went from town to town but one has to wonder how genuine some of these bags were. The custom arises from the belief that the presence of soil from Israel will make the resurrection of the dead and the journey to Israel easier for those who are buried in the Diaspora. It is brought down by the Rema in the Yoreh Deah. There is at least some sense that having dirt from Israel in the grave in the Diaspora can act in some measure as a substitute for actually being buried in Israel.
But returning to our topic, the truth is that almost all patients with terminal cancer do ultimately come to accept it in some form or other. Not infrequently one hears of someone dying in their sleep or otherwise suffering sudden death—a stroke, arrhythmia, pulmonary embolism, burst aneurysm. And one hears people comment how “lucky” he/she was. I imagine they believe this because they think the person has avoided some kind of long drawn-out illness with significant suffering. And if this is so, perhaps there is a kernel of truth in what they say.
But is sudden death the preferred mode of exit—a random bullet on the subway or one of the catastrophic events described above? I would argue that sudden death deprives you of the opportunity to ponder and come to terms with your end, to be with your loved ones, to have your loved ones be with you. Cancer in this respect can be, in my opinion, a merciful disease in which you know when your end is to be, and you can act accordingly. The travails of everyday life can be measured appropriately. There is time to call the in-law or sibling you have not spoken to and been broyges with for four years over who-remembers-what and to reconcile. There is time to pass on wisdom to children and grandchildren and just to spend some real time with them. I have always been deeply affected by the deathbed scene of Jacob and his children—knowing his end was near and so he could say good-bye.
What is it that we really fear when we think of dying? In my view, we fear pain and disability,the loss of our usual normal lives. I think that in the modern world of medicine, with advances in palliative care, pain control should be fairly good for the bulk of patients. Disability is, of course, a different matter. Patients do suffer from not being able to continue the activities of daily living they are accustomed to—loss of appetite, fatigue, often the need for catheters because of tumor obstruction, shortness of breath, inability to care for oneself—these are the problems that face the terminal cancer patient and lead to recoil and fear as the end approaches. But nowadays most of these problems do have some degree of management available in the modern medical armamentarium. And most patients do develop some kind of acceptance (a la Kubler-Ross?) as the end draws near. And perhaps as a blessing of sorts, most terminal patients develop changes in mental status that ease the way.
The truth is that the terminal stages for most patients are difficult for the family and caregivers, more so than for the patient. We need to think more about how to help them and to ease their way so they can accept the end with less pain and more equanimity.
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. Email: [email protected].
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.
