July 01, 2013

Approaching the Endgame

At age 94, one of the giants of our era is reportedly dying. Nelson Mandela has been hospitalized with pneumonia for the last 3 weeks, his fourth hospitalization in less than a year. Like all patients, Mr. Mandela deserves privacy and dignity as his life draws to a close. But whenever a public figure is desperately ill, the choices he or she makes about medical treatment provide an opportunity for us to reflect on the approach to care we would want in the final stage of life.

What is striking about  the many media accounts of his situation that I have seen is that none have made reference to hospice as a possible approach to care. The widespread assumption appears to be that hospital treatment is the only possible course and that every effort will be made to prolong life with technological means, regardless of how burdensome, ineffective and ultimately futile such treatment might be. Hospice care, by contrast, seeks to relieve suffering and to focus on maintaining quality of life as long as possible, often in the  home.

When Jacqueline Kennedy Onassis died in 1994, she made the explicit decision to leave the hospital and die at home. She had reached the point in her treatment for non-Hodgkin's lymphoma, a cancer of the lymph nodes, where she felt that further possibly life-prolonging medical treatment would cause more harm than good. She declined antibiotics for pneumonia, a complication of her cancer, and died at home, surrounded by the family, friends, and books she loved. The choice made by this intensely private but very well-known icon showed millions of Americans that it was feasible to die gracefully at home.

When Pope John Paul II died in 2005, he was also cared for in his personal residence, though with physicians and nurses in attendance. At age 84, he suffered from advanced Parkinson's disease and developed an overwhelming infection, as often happens in the final phase of Parkinson's. The Pope continued to receive some potentially curative medical interventions until the end, consistent with his personal beliefs, but he was not put on a breathing machine as his respiratory status deteriorated, he did not get dialysis when his kidneys failed, and he did not have a permanent feeding tube for artificial nutrition. The Pope's care illustrated the encyclical he had issued earlier, stating that "when death is imminent and inevitable," patients can refuse treatment that "would only serve a precarious and burdensome prolongation of life."

Life is precious. We do not want to die. We do not want to lose those we love. We do not want to say goodbye to someone as revered as Nelson Mandela.  And choosing how much and what kind of medical care to receive near the end of life is a very personal decision, with religious beliefs, cultural factors, and personal preferences all influencing people's choices. But we are all mortal.  The illness of this great man should stimulate us each to think about the approach to care we want as life draws to a close--and to write down our thoughts in an advance directive and tell our families and physicians.

1 comment:

Anonymous said...

Thank you, thank you, thank you. What a thoughtful and brilliantly crafted summary of the inchoate thoughts rumbling through my brain. I was shocked to read a tweet a few days ago that Nelson Mandela had been put on "life support." What?? And he's been in "intensive care" for these last three weeks, even though it's nearly two weeks since the hospital announced that they were "keeping him comfortable." One doesn't need intensive care to be kept comfortable. As a surprisingly private man, Mandela is said to have wished for a quiet death and a quiet funeral. Sometimes, of course, public figures must submit to the public's needs; for example, it seems unlikely that Madiba will be granted a private funeral given the wishes of his nation and the public grieving that has already begun. Yet I'm encouraged by your note that even Pope John Paul II rejected heroic treatment when his natural life was drawing to a close. Apparently even public figures at least do not owe it to their public to prolong life in unfruitful ways. Those of us in private life already know we are lucky enough to have the power to make choices that suit us, if we make those choices soon enough to document our decisions for the future. I hope everyone reading this will be sure to complete an "advanced directive" (if one doesn't already exist) to specify personal preferences, especially any unlikely to match the prevailing ideas of family and/or medical practitioners.

So happy to have been directed to your blog by the recent NYT article. What a find. Again, thank you.