Well-known doctor and author Atul Gawande has written an important article in this month’s The New Yorker entitled “Letting Go.” It raises important issues regarding end-of-life care and decisions patients and their caregivers should think but that too often get overlooked.
I admire Dr. Gawande’s honesty and courage in writing candidly and with great insight on healthcare topics which deserve the attention of all Americans.
I found the article to be so compelling and relevant because having just visited the gravesite of my parents, I reflected, as I read the article, on the events that led me to become familiar with hospice. I reflected on the discussions I had with both my parents about the decision to use hospice services to guide them and our family through the final days of their lives.
Originally the picture we all shared of hospice was of "a morphine drip." But similar to Dr. Gawande, I came to realize that the goal of hospice was not just "to let nature takes its course," but to help carry out patient wishes for living the remaining days or months of his or her life.
In 1992 my father-in-law passed away under hospice care. When the decision was made to engage hospice services, my wife explained how her father had reached the decision. He was trained as a chemical engineer, so his decision-making processes were based on statistical analysis and logic.
When he learned that a long-term chronic illness would require surgical intervention and follow-up therapy that would leave him dependent on portable oxygen, he asked his physician to explain how his quality of life and life expectancy would be defined if he accepted the treatment process or did nothing.
When he learned the proposed treatment would result in alternating good days and bad days over an expected one-year survival, compared with three months of good days followed by a decline in his condition if he did not purse treatment, he responded he would take his good days in succession and then move to hospice.
Soon I had these discussions with my own father. After some uncomfortable moments, he made his wishes clear: freedom from pain and discomfort, maintaining mental awareness as long as possible, and the ability to converse with family members and friends.
In addition, he wanted to spare my mother from the pressure and burden of caring for a weak and unresponsive husband. Six years later my father’s condition deteriorated to the point that hospice services were provided in accordance with the objectives he had defined for me.
These experiences have made me a strong advocate for engaging our loved ones early on in defining how end-of-life care should be provided. I have learned over the years that the unwillingness of physicians to at least encourage patients and families to have these discussions is one obstacle that must change.
Dr. Gawande acknowledges that assuming this role will require physicians to learn how to conduct such meetings and in turn deal effectively with family members. This will take additional time that is unfortunately not readily available to physicians. This was one of the major reasons the initial health reform proposal provided Medicare payments to help compensate doctors for these important appointments with patients.
I found the response to this proposal by demagogues and political opportunists to be repugnant. To label this effort as an attempt to establish "death squads" trampled on the rights on patients to make informed choices about end-of-life care.
I hope Dr. Gawande’s article will spur a more enlightened national dialogue on this subject. The right to make informed decisions about end-of-life care, consistent with a patient’s own wishes, is worth defending and making a reality.
Mike Stephens blogs regularly at Action for Better Healthcare.