For all but our most recent history, dying was typically a brief process. Whether the cause was childhood infection, difficult childbirth, heart attack, or pneumonia, the interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks. Consider how our Presidents died before the modern era. George Washington developed a throat infection at home on December 13, 1799, that killed him by the next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson all succumbed to strokes, and died within two days.Thus writes Dr. Atul Gawande in an article titled Hospice in the latest New Yorker. Dr. Gawande is a surgeon, professor and a researcher at Harvard and is best known for his perceptive and introspective essays on medicine, compiled in three best-selling books Better, Complications and The Checklist Manifesto .
The reason I chose to talk about this article (other than the fact that I obviously am a huge fan of his writing and way of thinking) is I had the opportunity to meet and talk with a palliative and hospice care physician (let's call him Dr. B) at a major teaching hospital in the big city where I live during my month-long clinical experience internship there. It was an eye-opening experience.
Things are much different now than they were during the times of John Q. Adams or Fillmore. People are living longer than before, and modern medicine has ensured - via revolutionary innovations like heart and kidney and lung transplants - that a lot of conditions previously thought to be terminal are quite manageable with constant supervision and a strict regimen of pills and followup visits. But as both Drs. Gawande and B discuss, the downside of people living longer is a marked deterioration in the quality of life, especially in terminally ill patients.
Let me make one thing very clear: neither doctor is arguing for withdrawing support or holding back from providing advanced care to patients. They are NOT advocating rationing care or establishing the horrendously named "death panels". They are merely raising some issues that all physicians face, at some point in their career, when dealing with terminally ill patients and their families. They are both advocating having frank discussions with patients to put things in perspective so that no one has to suffer when things don't go according to plan.
Dr. Gawande seems to say doctors, in their zeal to conquer disease and achieve better results, often give patients and their families false hope. He recounts the plight of a young woman who found out she had cancer on the day she delivered her baby, and her subsequent struggle to get better. Even though the cancer progressively spread to every organ in her body, her team of doctors kept offering newer and more radical treatment options. Each time they said, "There is this new Drug [X] in the market (or in research development) that has been shown to produce positive results in X% of patients". Despite her resolution to die peacefully at home, she passed away in the hospital after she was brought in due to a lung infection. Dr. Gawande writes, "Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs". There is no one to blame here, obviously. It is not as if the doctors were recommending ambitious treatments out of spite or malice. They,like patients and their families, want patients to get healthier. So what should they do?Patients and doctors need to realize that though death is the enemy, there is no way to stop the inevitable. As a result, patients and their families should have a very frank and open discussion with their doctor about end-of-life expectations.
This is where Dr. B comes in. He runs a palliative care and hospice program, and has been working tirelessly to increase awareness and get more doctors to ask for his help when talking to families and making plans. In the beginning, he said, he was often consulted after the patient passed away, when there is obviously no palliation to do. Nowadays, he gets consulted all across the hospital and makes the best of it. His take on diseases is this: a vast majority of things doctors treat are terminal: diabetes, heart disease, renal disease, dementia and so on. There is no "cure". We can only hope to manage these conditions. He stressed the importance of sitting down when the patient is relatively healthy and creating a lucid directive based on the patient's wishes. Ventilator? Antibiotics? PEG? There is a need for this talk with the patient and the family to avoid complications later on. He told stories about patients where the family wanted to keep the patient alive even though doctors had given up all hope just because the patient was ambiguous about end-of-life arrangements. Worse, he told about cases where the family itself was split into two or more camps and the patient was in a coma. Everyone wants to respect the patient's wishes, let the patient die with dignity. Where is the dignity if no one bothered to ask the patient what his/her expectations were?
Of course, not everything he told us was this bleak. We saw a patient of his, a 75-76 year old man with end-stage lung cancer who wanted no more treatments and just wanted to go home. The doctors thought a PEG (a feeding tube inserted straight into the stomach) was the best option and the son wanted it too, but the patient was firm. Ultimately, his wishes prevailed. Dr. B arranged for hospice care and the son and mother took the patient home. Talking and shadowing him was a pretty moving experience because we all like to showcase the glories of medicine: how the heart transplant cured the 20-year old patient, or how the skilled surgeon removed the glioblastoma. But no one likes to admit that making end-of-life arrangements is important too. I am glad high-profile doctors like Dr. Gawande are writing about this to raise awareness. Dr. B told about one his patients who said, "Doc, I get to die only once. You better get it right."