Farewell Reflections
By Sterling Hawkins, MSW, LICSW, BCD
Among the obstacles to initiating hospice care that have been cited, the right to allow a patient to determine their own choices at the end of life is perhaps the hardest to quantify. Whether a patient on your caseload or a family member, it's challenging to allow others for whom we care to take calculated risks when their quality of life values differs from ours.
As a clinical social worker with years of home care experience, I watched this drama play out between myself and my mother as I sought to create a safety net, in short, to facilitate a controlled landing. What this meant for me was not waiting until she had a fall before using the walker, allowing me to start helping her with paying her bills, grocery shopping, and providing transportation to medical appointments. Not waiting until she became entirely dependent for activities of daily living. However, mom always wanted to wait for a "failed attempt" at something before she would agree to my recommendation, or at least hear the same advice from someone else.
I understand this is how many would respond to permanent losses. When being proactive is seen as premature and where determination meets ignorance. These are defining moments where competing values in quality of life challenge one's need for a level of safety that is often mildly paternalistic. This is how I felt when my mother's risks exceeded my comfort zone.
None of my mother's requests for me were unreasonable. I simply believed my alternatives were more rational because they minimized the likelihood of the unknown and uncertain outcomes. What I initially overlooked was her appreciation that life has as much to do with an ever-increasing awareness of vulnerability with its risks and the knowledge of one's own mortality. I had traversed this course as a family caregiver over the years with several family members, each with their own sense of awareness of what they wanted to hold onto and what they were willing to give up.
My mother in the final weeks of her life made huge accommodations for me and others involved in her care, which eventually satisfied her hospice team and me. As her independence gave way to the need for more assistance, trust grew and reached the default of little or no resistance. We agreed, however, that as long as we talked about the risks, and she understood them, I would not try to restrict her choices unless there was clear evidence where doing so could jeopardize her existing freedom. Examples of this were allowing her to bathe with supervision, using the walker to ambulate distances less than 25 feet, and allowing me to fill her medication box, and pay her bills, rather than her trying to do these herself. Other compromises were keeping the cordless phone by her bedside at night to avoid getting up and possibly falling, and using her oxygen and wearing incontinence briefs when trips to the bathroom unassisted were no longer possible.
This developed into a workable arrangement. Mom spent her final weeks measuring what she was able to successfully do on her own, no matter how small. I always encouraged her because I knew it helped her to feel useful and still needed and able to teach others about dying well and re-living in memory the history her grandchildren and I would inherit. Mom passed in late January, six months after entering hospice care. She was 89 years old.
If we're honest, each of us is no different in having our own set of values guide our decisions and actions whenever we're forced to accept our natural limitations and never more acutely than at the end of life. Barbara Ehrenreich, in her book "Natural Causes," writes- "You can think of death bitterly or with resignation as a tragic interruption of life and take every possible measure to postpone it. Or, more realistically, you can think of life as an interruption of an eternity of personal non-existence and seize it as a brief opportunity to observe and interact with the living, ever-surprising world around us."
As I reflect on the events of the Covid-19 Pandemic, I am reminded of how quickly relationships both personal and professional can suddenly or tragically change and disappear. And, at this unprecedented time in our history, what unifies us all is our true nature: the spirit. It is our most precious self, and we can influence the entire universe, whether for good or evil, through one small deed. What we should remember during this time is that how we observe and interact with people in the end, always matters.