GoodEnding was largely inspired by my mother’s not so good ending. During her last year of life my mother was in and out of Mass. General Hospital, and subjected to numerous tests and procedures, none of which improved her quality of life. After reading Atul Gawande’s New York article “Letting Go”, my sister lobbied to have our mother put under hospice care. Everyone agreed and our mother passed away peacefully within 48 hours. Ironically, our father helped found the first hospice in Massachusetts in 1978. When I asked him why mother was not put in hospice care earlier, he responded, “She was getting the best medical attention and we simply did what her doctors recommended”.
Unfortunately, I frequently hear stories similar to my mother’s. Doctors and the medical establishment are naturally pre-disposed toward prolonging life. A Stanford study found that 90 percent of doctors would forgo resuscitation and aggressive treatment if facing a terminal illness. Yet these same doctors would tend to pursue aggressive treatment for patients. What’s to be done?
Forewarned is forearmed. When facing one’s own decline or that of a loved one become informed. As with my mother, we all too often defer to the recommendations of anyone wearing a white lab coat. It doesn’t have to be this way. Choosing Wisely’s mission is “Advancing a national dialogue around avoiding unnecessary medical tests and treatments.” The Patient Resources section of their website provides resources to inform and empower patients and caregivers to ask questions about what tests and procedures are appropriate. For every recommended test or procedure, one should always ask, “Are the results likely to change the course of treatment or the quality of my remaining life?” One can then make an informed decision weighing the risks/discomfort against potential benefits.
More generally, when faced with a terminal illness, one should understand the likely trajectory of one’s illness. Katy Butler in The Art of Dying Well recommends, “Ask not only about length of life, but about how you will feel and function, and how proposed treatments will affect your well-being.” A picture is worth a thousand words. The Art of Dying Well and Atul Gawande’s Being Mortal recommend asking one’s doctor to sketch an anticipated death trajectory and possible variations under alternative treatment regimes. A new treatment might extend one’s life but at the cost of feel and function.
So, when faced with end of life decisions, take a step back, do your research and ask the important questions. Only once fully informed should you consider doing what the doctor orders.