Comfort Always: My First Experience with Life at the End and the Care that Accompanies It
Alison Mercier, CVV 17
Alison volunteered at Health SET during CVV and is now a medical student at the University of Vermont College of Medicine. She helps to host the Mondays with Palliative Care series, sponsored by the Palliative Care Student Interest Group, the Madison Dean Initiative and many other College of Medicine departments. Her reflection was posted on their blog on Oct 16, 2015.
One foot after another Harriet* jerked her walker forward, apathetically moving towards her destination: The doctor’s office. At 79 years-old, her skin draped over her bones, and her muscles heaved as she struggled to breathe with each step. After smoking about two packs per day for 40 years, it was a miracle Harriet was alive to experience the crisp air on this early fall day.
I had met Harriet only days earlier at the mobile health clinic that visited her subsidized housing building monthly. Weighing her in upon entry to the clinic, we discovered she had lost over 10 pounds in the last month. Immediately, the head nurse directed me to persuade her to go to the doctor’s office – a lofty task as she had sworn off doctors many years ago.
Multiple conversations and a few days later, Harriet and I visited the doctor together. The appointment was a blur except for Harriet’s unmistakable anger. In her eyes, all they did was cost her twenty dollars she wasn’t even sure she could pay. Too malnourished and unhealthy to be treated for any of her complications, Harriet was left with the recommendation to drink Boost, an artificial diet supplement akin to baby formula. The life cycle was coming full circle and Harriet wanted nothing to do with it.
Harriet’s condition rapidly deteriorated as weeks passed. She could hardly dress herself and seldom left her room. I met with her regularly, facing an inescapable dilemma: What could be done for her physical and emotional pain as she faced her impending death? What was my purpose? I could not abandon her, a lonely woman whose story I had come to know was riddled with grief and agony, embarrassment and guilt. Harriet had spent countless years in jail, had been abandoned by her family, and was struggling to come to terms with the way she lived her life.
Witnessing this turmoil all but consume her, I continued to feel paralyzed until one of the nurses suggested a referral to palliative or hospice care. I had never heard of this kind of care, and neither had Harriet. I would eventually learn that palliative care focuses on the physical, psychosocial and spiritual needs of those facing life-threatening illness.
Begrudgingly, Harriet consented to one visit with the palliative care team under the auspices that it was free, and they would focus on comfort. The following day, Dr. Z called on Harriet at her apartment. During this visit, Harriet escaped the typical poking and prodding of a physical exam, and was instead confronted with an arguably more intense one. What did she want at the end of her life? Where did she want to spend her last moments on this earth? As death loomed, the stark reality of Harriet’s isolation hung in the air: Who would be there at the end? Who could assist in administering medication to manage pain so that she could face her mortality while maintaining some quality of life? Was there anyone who could support her in possibly forgiving herself and dying peacefully? What did that even look like?
Being with Harriet as she struggled with her mortality opened my eyes to a sheer, unadulterated experience of humanity I had never known before. It was even more powerful to witness Dr. Z’s courageous, patient and warm presence empower Harriet to bravely inch closer to an acceptance of the life she lived. This also, eventually, helped her to accept her death.
I am grateful to have been exposed to the model of palliative care – one that focuses on understanding and alleviating the different kinds of suffering as defined and experienced by the patient. A care that truly values what matters most to the patient and works creatively to make sure their needs are met. Embracing these virtues has become of utmost importance to my development as a future physician –Harriet and Dr. Z taught me how I can help ensure patients have the opportunity to die with dignity and grace.
*Name and some details have been changed to protect patient confidentiality.