Matters of Life and Death

In his book Being Mortal, Dr. Atul Gawande, a practicing surgeon, discusses how having the hard conversations about end-of-life medical interventions (or not) may lead to a shorter life but a more fulfilling one. In his book Telltale Hearts, Dr. Dean-David Schillinger, a physician and public health advocate, discusses how accurate diagnosis, treatment, and true healing come from listening deeply to patients and their stories.

Medical advances in the past century have been astounding. We live significantly longer and are able to survive repeated health crises that once would have killed us. Nearly everyone would agree that in many, if not most, cases that’s a positive thing. However, many would argue that our hyperfocus on prolonging life at all costs, along with our tendency to treat symptoms rather than looking for underlying causes, has caused us to lose sight of the importance of quality of life and true health.

Source: Samantha Stein

In their article Quality Versus Quantity of Life: Beyond the Dichotomy, Drs. Ariel Dempsey and John Mulder suggest people facing the end of their lives be engaged in answering four questions:

1. What do you understand about your disease?
2. What is your understanding of the plan?
3. What matters to you?
4. Are the plans currently in place helping you to achieve what is important to you, or standing in the way of your goals?

While the article addresses end-of-life medical decisions, perhaps these questions could be useful for anyone who suffers from a chronic illness or disability, people who are aging and facing declining health or ability, or, for that matter, anyone who wants to think more consciously about their choices and the quality of their life.

In other words, most people want a life that is healthy, peaceful, and connected with community and family, and the freedom to pursue interests. These are worthy goals and hopes for all of us, including the chronically ill, disabled, and elderly. But goals and hopes don't ensure that our lives will go as we plan. We suffer from illnesses and treat their symptoms without having the conversations that might uncover the causes or the treatment that would best suit the individual. Additionally, our minds and bodies eventually fail–death is inevitable–and while medical advances have helped us to skirt premature death, they have also helped us to prolong a life that may or may not be in harmony with our desired quality of life and our values.

Quality-of-life decisions and end-of-life decisions are deeply personal for each individual and their family. Similarly, understanding the origin or continuation of a disease is both generally important and deeply personal. Unfortunately, most of the time root cause analysis and end-of-life decisions are not thought out, discussed, and made in advance of when they are needed. Medical and technological advances as well as an overburdened and underfunded healthcare system and historical marginalization have hindered our ability to think about quality-of-life questions with conscious decision-making, laws, and moral wrestling. Perhaps it is time to catch up. These are conversations worth having.