My father died this morning. He died peacefully in his bed at home surrounded by family members, trusted caregivers, and my late mother’s artwork. This photo, which I took a few weeks ago, shows my father ‘getting his daily exercise’ doing laps inside his house using his walker, under the watchful eye of my mother (the painting is her self-portrait about her own heart disease). My father died from the effects of congestive heart failure. When he died, my father wasn’t exactly wearing his boots and gardening gloves, but very close to it. Our family harvested sweet potatoes yesterday from my father’s backyard garden.
Four years ago, when I began this Medical Margins blog, my first post was about my father’s (and our family’s) struggle to negotiate a dignified and peaceful home death for him amidst the Kafkaesque nightmare of our health care system. (See “A Practical Man and Modern Medicine” 9-26-10). I also wrote an essay about my slightly Quixotic efforts to be my father’s cross-country patient advocate and health care proxy through his countless hospitalizations and transfers in and out of nursing homes and home heath care. (See “Home Death” in The Johns Hopkins Public Health Magazine, Special Issue 2013).
During his last hospitalization (a bounce-back hospitalization after only two days at home and before hospice was finally ordered), my father was moved to six different hospital rooms on the same cardiac floor in less than a week. He became more and more distressed and disoriented with each move. He was being treated with three different antibiotics (two IV) for two different hospital-acquired infections. This was despite the fact that my father had clearly documented Advance Directives requesting none of these unnecessary ‘heroic’ measures. It took a direct plea from me to the head of cardiology to have the antibiotics discontinued and my father released to home hospice. That was only three days ago. His (nonprofit, religious-based) home hospice was terrific.
I’ve realized during this final surreal (is ‘Woolfian’ a word? it should be–it has felt very much like her writing in The Waves) month, that we have created a Frankenstein monster: ‘the creature’ or ‘the wretch’ of our health care system (especially the hospital). I’ve realized that my frustration and anger over my father’s end-of-life care is not as simple as displaced grief over losing my father. My anger can not be directed at any one physician or nurse or hospital. Rather, my anger is really dismay (bordering on despair) that I–that all of us– can have been a part of the maintenance of such a sad and broken wretch. Apart from putting all of our hospitals and nursing homes on (the melting) ice flows along with Frankenstein’s monster, what can we do to reform and redeem this creature we have created?
To the Reverend John Edward Ensign, my force-of-nature father: rest in peace.
*The Institute of Medicine just released a fascinating study addressing this problem and question: Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, 9-17, 2014.
** The NYT recently published a Pulitzer-worthy article by Nina Bernstein: “Fighting to Honor a Father’s Last Wish: To Die at Home” (9-25, 2014).