Struggling with end of life decisions

Two weeks after starting my residency in pediatrics, a six week old baby boy was admitted to our ward with new onset seizures. Whether it was because something didn't seem quite right with the infant (who didn't maintain eye contact, and had not yet begun to smile), or simply because he felt that caring for this child would be a good learning experience, the chief resident assigned his care to me. And so began an intense relationship with the child and his parents, which started that morning and continued beyond the night he died five and a half months later. He, as we later found out, suffered from a rare disorder, for which there was no cure, only partial and unsatisfying treatments for its various manifestations as he slowly but surely declined, his different organ systems failing one after the other until his final demise.

I was reminded of this child several times while reading "A Life Worth Living: A Doctor's Reflections on Illness in a High-Tech Era", written by Dr. Robert Martensen, an emergency medicine specialist, medical historian and medical ethicist, who has practiced in several hospitals across the country, including in Boston, New Orleans, and an unnamed medical center in the mid-west. This book, a collection of essays, is an examination of various aspects of health and end of life care, especially as they relate to the most vulnerable members of society: the chronically ill, the indigent, the elderly, and the mentally disabled.

The issues he raises in his book are important ones, and very relevant today as the runaway expenditures on healthcare come under renewed scrutiny. Martensen quotes the work of Arthur Imhof, a Swiss demographer, who found that a person who reached the age of 80 in Berlin, Germany, in the year 1600, could reasonably expect to live an average of 6 more years, whereas a person reaching that milestone in Berlin in the year 1980 could expect to live an average of 8 more years. As he points out, 380 years of medical research, discovery, innovation and progress have culminated, for octogenarians, in only a 2 year increase in their lifespan, a good part of which, unfortunately, is spent in increasing infirmity and growing dependence upon the medical system. When one considers that more than 34% of personal healthcare expenditure in the United States in 2004 was for people age 65 and older (more than 531 billion dollars), that 28% of Medicare costs in 1988 were generated by the 6% of those patients who died in that year, with 40% of the total Medicare expenses in 1988 being generated by people over the age of 65 during their last month of life, one can be forgiven for being more than a little skeptical of the value added by such costly interventions, especially when the last days and weeks (and in some cases, months) of life are all too often marked by discomfort, indignity, and suffering, both of patients and their families.

The final essay in the book, "As Night Draws Nigh", relates the death of Martensen's father at the age of 86 from a heart attack and bacterial sepsis. Martensen kept a journal during the final days he spent with his father, and he "reproduces the account [...] to illustrate how a ‘better death' can unfold." Once it became clear that his father's condition had deteriorated to the point where he was both suffering and no longer had any chance of recovery, Martensen, his brother, step-sister and step-mother decided, along with his father's doctor, to give his father Ativan and morphine in order to relieve his air hunger, and then to say their goodbyes. "In a few minutes his posture and breathing eased, I told him that his time on earth was coming to an end and that I loved him. I touched him with a recent photograph of my children. Then I took the oxygen tubes off him, kissed his forehead, and wished him peace. The last words I heard from him were "Thank you". Then I excused myself, and Bill, Linda, and Jean each had time with him".

"A Life Worth Living: A Doctor's Reflections on Illness in a High-Tech Era" is a book worth reading, for medical professionals and lay people alike. It gives the reader an opportunity to examine some of the key issues facing healthcare as a whole, as well as an opportunity for introspection and consideration of how one might begin to approach some of the most emotionally charged decisions one will ever need to make, both for loved ones and for oneself.

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Dennis Rosen, M.D.

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