October 23, 2019
“Some consider death as a landing; others see it as a point of lift-off.” — Darrell Grant, musician, speaking at a Compassion & Choice, Oregon event.
The topic of death appeared twice in my view last week. In one instance it concerned death with dignity. It looked like anything but, in the other.
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The cramped office at Street Roots was crowded by news media cameras, various Multnomah County politicians and Tri-County Health Officer Dr. Lewis for this year’s introduction of the Domicile Unknown Report. Published by Multnomah County and Street Roots, the report tracks the annual deaths of those living without housing, with data gathered by Multnomah County Chair Deborah Kafoury, Dr. Lewis and Chief Medical Examiner Kimberly DiLeo.
For 2018 the statistics were grim – 92 people in Multnomah County died without having an address and that is not necessarily counting all those who passed while admitted to hospitals. 11% died by homicide, a few more than 10% by suicide, and only a smidgen over 50% of the deaths involved drugs or alcohol. The average age for the 22 women among them was 43 years. Cold killed. Disease killed. Houselessness killed.
Death, in thought or in reality, is never far away from those living on the streets, they who face violence, they whose belongings, medications included, are taken away when the garbage trucks sweep in, they who will not take antibiotics prescribed for medical conditions because they fear diarrhea in the absence of public bathrooms or the opportunity to launder clothes. These deaths are not landings, they are crash landings, utterly avoidable like so many crashes if preventative safety measures were available. These must include accessible housing, medical care and debt re -structuring, given that debt (originating from health costs for so many) drove them into an unhoused existence in the first place.
Maybe the planned Downtown Behavioral Health Resource Center will diminish the current rate of deaths: a place, in the words of Street Roots’ executive director Kaia Sand, where people can exist, with the spirit of hospitality and the possibility of extra support. Maybe our compassion rather than irritation will lead to individual actions that help combat houselessness. We have that choice.
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Death as a point of lift-off might become the reality for some of the rest of us who live in a state where courageous individuals and organizations have fought long and hard to provide wind in the sails for a gentle(r), pain-free, self-directed take-off.
I had been invited to attend Wednesday’s fall fundraiser of Compassion & Choices by Susan Prior, Senior Manager of Development and Stewardship, who I happened to meet at the house of a former Board member of the organization. I am glad I accepted the invitation from this warm and energetic woman.
I usually avoid events at the posh Multnomah Athletic Club, with their waste of food during luxurious meals, where people surreptitiously look at their watch (at lunch) or are straining with small-talk (dinner) until it is time to whip out the checkbook. This time was different.
Buffets with small refreshments, sort of like tapas bars, allowed inconspicuous consumption. Time wasn’t wasted either. After a few minutes of meet&greet the program started with one interesting speaker after another.
My declared preference of “give me the facts already” was immediately met. Indeed, I was facing a lot of new, complex information beyond what I knew about the goals and accomplishments of the organization: improving options for compassionate dying and assuring patients’ rights to make end-of-life choices in accordance with their values and beliefs.
Kim Callinan, the Chief Executive Officer of Compassion & Choices, reiterated the major gains: so far six states have authorized medical aid in dying and 21 national and state medical societies have dropped their opposition to Death-with Dignity legislation. All of us, including those who would never consider aid-in-dying as a possibility due to faith-based or moral reasons, have benefited from the movement. End-of life care has radically changed as a result of the movement, being more devoted to palliative measures, and more inclusive of patients’ wishes.
Instead of seeing death as a medicalized event requiring all available methods to prolong life, medicine now eases the process of dying with hospice care, palliative pain management and, most drastically, the possibility of aiding in the passing of terminally ill patients. In some ways this has de-stigmatized what was previously considered suicide, a moral aberration for many. Aid-in-dying shortens a life expected to end soon; for instance, Oregon’s Death with Dignity Act stipulates that patients must have a prognosis of less than six months to live. It is not a choice of life over death, then, but one kind of death rather than another – one that implies agency by the patient and abbreviates incredible suffering.
The cultural shift towards the patient rather than the medical establishment as the decider, has been of seismic proportions. According to Callinan, the next effort will be to reach out African American and Latino populations to share the potential benefits of this movement. Generally, there is the need to spread the word that Advanced Planning and written-out directives to honor ones decision are of utmost importance.
This became clear during the address of Barbara Combs Lee, whose book Finish Strong – Putting YOUR Priorities first at Life’s End was the inspiration for a set of new tools and resource guide to help plan for end-of-life care. You can download a planning guide here, that provides help with assessment of your values, your options, and means of communication with those who will be caring for you. It also outlines provisions for the painful case of having to prepare for the advent of advanced dementia after an Alzheimer or other dementia diagnosis.
I strongly recommend looking at the guide – I found it valuable both for the information it offers about what problems one might face as well as for the solutions that are proposed.
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Dan Winter, who serves on the Board of Directors for the ACLU in Oregon, gave a testimonial at the fundraiser that left me impressed as well. It is not everyday that you see someone with the courage to describe the suffering of a parent living, endlessly, with dementia and now, early, having an Alzheimer diagnosis themselves, prompting them to think about end of life care.
I understand the reasoning that you want to preserve what you consider your dignity and not live for endless years in a husk when your former self has long departed in spirit. I also understand that we are dealing here with a medical situation that centers on acts of omission – not providing life-prologuing measures like antibiotic treatment in case of infections, or not forcing food when the patient is refusing to open their mouth or eat anything – rather than the act of commission of providing the means to a clear-minded, consenting adult wishes to ingest to end suffering.
And yet – how do we assess whether the patient really wants to die, when a certain stage of dementia is reached? How do we ensure that those who are proxy decision makers can be trusted? How do we interpret temporary refusal of foods as more than temporary? History has no shortage of slippery-slope abuses – as a German I am exceedingly sensitive to issues of euthanasia. Moreover, a normatively functioning adult often assumes that non-normative forms of existence must be horrible – when we know now from a host of insights from the communities living with (severe) disabilities, that that is not so and rich lives can be led.
I am not saying that an existence with dementia is a rich life, don’t get me wrong. But I am asking about the importance of considering the subjective experience that a patient can no longer communicate, but which might diverge from what we think they must feel. It seems contradictory to put such stress on agency in the process of dying – something I wholeheartedly agree with – and then minimize it when the cognitive tool kit is somehow different from our own.
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I don’t have answers, fully aware that, from my current perspective, I do not wish to live for years with advanced dementia either. I do remember vividly from my volunteering days at a local hospice (now closed) that there are some kinds of pain that cannot be treated no matter how advanced medicine is these days; having an option to escape that kind of pain is a gift for many and does not devalue life, in my opinion. I also remember that the incredible nurses who were surrounded by and easing daily lift-off’s as I now like to think of death, always imbued agency to the timing of death. If the patient died before the family arrived,”they wanted solitude, or they wanted to spare them.” If they died right after the family arrived,”they waited until they were there.” If they died at the end of a long night of being surrounded by one’s loved ones,”they were ready to go and let people go on with their lives.” I think the notion of having some control in the one event every single one of us will never be able to escape is a comforting thought. Rather than focussing on the mechanics of inevitably failing organs, we can attend to the power of our spirit. The lasting dilemma will be when that spirit no longer has words to communicate, and when it is safe to assume it has lifted off before the body could follow.
It is good that there are organizations grappling with these issues and offering advocacy as much as a forum for thought and discussion. We are richer for it.
New Land, for all of us.
