We don’t typically think of “the end” as a common place to get stuck — because by its very nature, the end comes no matter what. But, getting stuck in one way or another at, or toward the end of life, can — and does often happen — to our loved ones, to those who care for them … and even to us.
With a sincere desire to keep those we love so very much with us as long as possible, we may find ourselves stuck in a cycle of leaving no stone unturned in aggressively addressing each and every health issue that arises. Couple this with medicine’s endless supply of advancements, experimental treatments to help prolong life and a wide array of nursing and assisted care facilities to keep our loved ones safe — and we can very easily fail to consider avenues that may provide for greater enjoyment of the precious days, months and years leading up to the end.
In Being Mortal: Medicine and What Matters in the End, author/surgeon Atul Gawande offers a fresh perspective well worth considering. He examines how the well intentioned quest to prolong life by medical professionals, fueled by families’ desires to do everything possible – all too often runs counter to the quality of life that is often desired but not proactively articulated by elderly or seriously ill patients themselves. Gawande offers an alternative model that helps to provide patients with not only a good life — but a good end to life. Since what constitutes a good ending will vary greatly by individual and family, this model requires a candid assessment of our loved ones’ preferences and priorities for how the remaining time allotted to them is spent. In order to do this, medical professionals must assess the patient’s understanding of his or her condition, the risks and benefits of available treatments and of undergoing no (or less) treatment, and any fears or concerns the individual may have.
Gawande suggests that treatment decisions might be more appropriately made when based on the likelihood they will lead to a quality of life that the patient would consider worthwhile through the end. We can only know this, of course, by having assessed the patient’s preferences. To gain this knowledge for when it is most needed, we need to talk early and often about end of life preferences and seek to identify, to the extent possible, what trade offs and treatments are acceptable and where to draw the line.
While we may feel that getting as clear as possible on what our loved ones want the end of their lives to be (or not be) is a form of giving up – just the opposite happens to be true. Soliciting and honoring our loved ones’ preferences can help all involved more confidently and peacefully move forward — and with far less anguish, uncertainty and pain. Not knowing which direction to go — and when enough intervention is truly enough — creates considerable anxiety. Whereas achieving clarity, no matter how difficult it is to have had the conversation(s), creates a sense of control and direction – and helps to get everyone on the same page. Having a plan creates comfort.
Through the many patient experiences he explores and his own touching end of life experience with his own father, Gawande reveals how courageous and valuable a choice it can be to focus on interventions designed to provide comfort, rather than a cure, at the end of a patient’s life. This approach, of course, requires an understanding of our loved one’s wishes, a level of acceptance that death is approaching and a desire to help our loved one experience more meaning and less suffering during whatever time remains. Despite the complexity and sensitivity inherent in the topic and the painful scenarios that are included along with a number of truly uplifting ones, Gawande’s writing is gentle in its honesty. Being Mortal is a must read for those wanting to help those they love live their final days more fully.
When the end of life is imminent for someone we love, the value of getting unstuck – for whatever amount of time remains – can go a long way. Gawande’s Being Mortal and the advance planning and thoughtful alternatives it advocates provide a valuable model for how to help our loved ones (and ourselves) move forward with peace of mind and grace as we lovingly walk them home.