A personal & professional view of medical-aid-in-dying cocktail use in San Francisco.
L.C. decided what his deathday would be a few weeks before it happened. It wasn’t mystical.
He quoted The Gambler song to me in his last days with us on hospice. In his cheerful, reserved but upbeat way, he smiled.
“You gotta know when to fold’ em…”
This brought to my mind an Orson Welles quote about happy endings.
“If you want a happy ending, that depends, of course, on where you stop your story.”
Our hospice patient was a meat-and-potatoes, stand-up, guy because “my grandfather raised me that way.” In the manner he had lived his life, he chose that particular day because it was well-reasoned, measured and considerate of all concerned. As few humans in history have been willing or able, he was claiming for his departure the uncertain privilege of certainty: September 4, 2021 at 9 AM PDT. He had successfully secured the paperwork to a 21st Century legislated kindness: a prescription and promise for an end-of-life cocktail now available in eight states.
Denial that death might ever happen to us was a modern standard before COVID-19 happened. Only when death comes near, and to the dear, do we reconsider our own exodus as plausible or even just possible. Then we may contemplate the preparation of the mundane but mindful paperwork to guide our loved ones with our wishes. Who in human history has been willing or able to put a calendar date and time to our deathday, until now? Perhaps only a few enlightened meditation gurus’ who can reportedly transition on command, or the warrior-soldiers of history who have chosen to make the ‘today is a good day to die’ determination
Our good man was in another category – not of choice; he was condemned. Not for crimes, but with a prognosis. He was a prisoner none-the-less with an ugly and excruciating cancer death ahead.
Like physicians, he also had extensive and intimate trench-warfare experience with what cancer looks like on the frontlines of love and caregiving. As a young man, he had watched too many of his own family confront and fight this debilitating and disfiguring disease. He looked death in the face and it smiled back at him in his beloved grandfather, his own brother, his mother, and brother-in-law. He was their primary caregiver as they declined into his able arms and into well-meaning but painful attempts at end-of-life (EOL) medical fixes.
Physicians have a higher likelihood of choosing significantly fewer EOL medical interventions in the last six months of their lives than an average patient because they have seen the limitations and the downsides of the medical model, which is, itself, a miracle. We fix the broken parts of the human body so well and in so many ways that as Atul Gawande says in Being Mortal, ‘Death is no longer a cliff but a slide to fragility.’ Medical-aid-in-dying counters that iatrogenic miracle with its own.
As a master carpenter, our patient too, knew about fixing the broken and making it whole. He taught many young men from Colorado to California about learning the life skills of fixing the broken, being responsible and kind. He was a builder– not a destroyer. Our good man moved his life after caregiving to San Francisco where he, eventually fell in love with an old Victorian apartment house which he bought, tended and managed for the last few decades of his life. He knew when fixing was a lost cause and when it was worth a patient restoration.
The Death with Dignity Cocktail or as the legislators call it Medical Aid in Dying (M.A.I.D) is about knowing when to “fold’em’. It is not an easy decision. It is one that is best grown incrementally from the inner to the outer as other important life milestones. Patients commonly undergo many more painful procedures than they actually want to because they do it for their loved ones who are bargaining for more time–either with them or with the Maker of All Things. On the frontlines of love, the good decisions are the ones that families tend to make together, listening to their infirmed one and putting their needs above their own. It is messy work. It is the work that hospice is lovingly crafted to support with doctors, nurses, aides, social workers and spiritual care & bereavement providers, like me.
The medical model has many miracles to its credit, but how to have a good death is most certainly not one of them. Hospice can both support the dignity of control and the respite of surrender with as much comfort as is possible. We support the whole person within the family unit. We also stand in for that family when there are none available. It is a privilege that is more than a job. It is a calling. Hospice teams support, tend and comfort. We do not hasten death, but neither do we prolong it. Hospice does not kill.
With M.A.I.D., we now stand by, in support, as the patient drinks the cocktail unassisted, which is usually a legislative safeguard. This creates a new experience for the hospice team. We are all willing to stand and serve our patient’s choices but how we feel about it, personally, is still being sorted. For me, I have never read a eulogy to the person I was eulogizing. I did not know what to expect. I explained my intent, that his life was very inspiring to me with its balance of a teaching legacy as well as being a maker. I did not want to embarrass him, as he seemed a quiet, reserved fellow, but I was honestly moved to write something for his deathday. I let him know, there was no obligation.
Many people have commented in my eight years as a hospice chaplain that it was a sadness to them that the memorialized could not hear their own memorial. Our gentleman-carpenter was no exception to this. He was appreciative and touched that I had heard him during our conversations about his life. He spoke words from his heart and said, “There are very few people in life who really listen to you. They are thinking about something else, or how they will come back at you…but they don’t listen. I do want you to read it on Saturday.” And I did. (You may read it too at www.makingspace.com/ceremony/eulogy-for-a-m.a.i.d-patient
It begins and ends with a Native American Prayer – A Chinook Psalter May all that we say and all that we do be in harmony with thee, God within me, God beyond me… Maker of the Trees.
L. C. met the Maker of Trees in the kind of death that most people say they want: in their sleep and in their own homes. It was for me perhaps the most gratifying death to which I have attended. It wasn’t just because his affairs were in order, the pain was controlled, and that he was ready, all which denote “a good death” but it was more than that. The Mystery from which we all come, reached out and called L.C. home, and because of M.A.I.D cocktail, he was able to reach back with the dignified control of a humble surrender. It was complete; it was a well-crafted finale.
Rev. Eleesabeth M. Hager is a hospice Interfaith chaplain in the San Francisco Bay Area, the author of two books, a resiliency workshop and a monthly, which is devoted to sustainable caregiving.
It was quite a week– The world played the part of "Goldilocks" and I was the three bowls of porridge: one was too hot, one was not hot enough...but I ended the week with it being 'enough" to just be of service.
As a working chaplain, who supports several hospices at this point, I have many 'congregations' so to speak. My standard intro is this:
"I support people of any faith or no faith and all the rivers which run between those two."
I have come to think of my congregation as singular but this week has teased that idea apart for me.
First visit: too, too Christian I visited a patient who was new to me; he was from a patriarchal culture and a faith tradition (and country...) which is not known for its progressive views on women. He was not likely to be of a Christian faith, but I guessed wrong as did not respond to my greeting of Al Salame Mehaham. He was reported by the team to be energetically "in denial" about his illness, and his prognosis. He was alone in this country without his family. He had already declined a Spiritual Care visit with me over the phone and had refused the medical social worker as well.
If spiritual support is not wanted, it is, of course, his right to decline. I usually seek to refer a patient to their own local clergy to be of support, if possible.
However, declining chaplaincy blinds the team. Communication can be more difficult. Much of a chaplain's scope is about communication and being an advocate to the medical team for the patient's and family's views and preferences.
What is getting in the way of whole person care?
What might support it?
This patient was declining and the case manager made an appointment for me to show up the next morning with little explanation. I was happy to have the opportunity to support his man. I prepared with appropriate books, liturgy from his faith tradition - the Koran, (and the Bible just in case...) with a trinket which was not iconic: a river rock with Love engraved, and my secret weapon - homemade candied orange peels. Gifts are a universal offering of support and a way in - to develop a relationship of care and trust.
It was a first step, which usually works.
Upon entry, the patient was confused; he did not seem to understand. It was unclear if the confusion was dementia from his disease or his command of English language. What was seen by the team as unhappiness, and perhaps depression seemed to be a defensive stance against this confusion. By happenstance an Arabic-speaking neighbor stopped by and translated, which improved everything. Providence, for sure was at work. It was also clear that he was not enthusiastic to talk to me, as a woman, as a "Christian" which was his view of who he saw. However, when this neighbor translated my offering of the homemade, candied orange peels as "like life we take the bitter with the sweet...I am here to see what we might do to make this day a little sweeter for you.", the gentleman's eyes twinkled and there was a small breakthough.
I asked him if he was Muslim. He agreed that he was. I asked if I could I reach out to a local Imam for him, he said no but then he was inspired to lead his own prayer in Arabic which was part song and part words.
It was beautiful and it was enough. He left our palliative care to hospice care soon after and I did not see him again. Sometimes all you can do is begin...and it may be enough.
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