I realize some time has passed since I last posted. A lot has being going on! Here’s a quick recap:
In August 2015 I completed the Certificate in Gerontology program at the University of Washington. In January this year I was trained through the Alzheimer’s Association to be a dementia support group facilitator. I will soon be leading a men’s-only dementia caregiver support group. Also in January, I completed a 3.5 day Elder Care/Adult Family mediation training in beautiful Sausalito,California.
A seminal topic that has emerged and resonated with me concerns the end-of-life journey and what that means to all of us as we age. Specifically, I began to recognize the importance of dialogue around what quality of life means to each of us as human beings; and the meaning and value of palliative and hospice care.
These topics take on significant importance when you realize that one in eight Americans aged 65 and over has Alzheimer’s disease. In short, 10 million baby boomers will get Alzheimer’s (“Generation Alzheimer’s: the defining disease of the baby boomers”, Alzheimer’s Association 2011). That means more and more individuals 65 and older are finding themselves either facing into chronic and terminal illnesses such as Alzheimer’s and related dementias, or their spouses or partners are facing these challenging health issues.
Individuals and families are facing into important questions, such as:
- What is truly important to us in our lives?
- What, intrinsically, are our true life values?
- What does “quality of life?” mean to us?
- When faced with a chronic or terminal illness, in what way might the answers to these questions impact our decisions – either for ourselves or our loved ones – around medical treatment and intervention?
What I want to talk about in this article is the importance of families having meaningful conversations with each other around their life values, the meaning to them of quality of life, and how the answers to the above questions impact choices around treatment intervention when a serious or life threatening illness happens. In a follow up article, I will discuss the meaning and benefits associated with palliative and hospice care.
I have written much about my journey of care for my wife Nancy, from her diagnosis of early-onset dementia in January 2008, to her death in July 2012. In the spring of that year, she was rushed to the ER twice. With her second hospitalization in June 2012, the deterioration of her health scared me, leading to my engaging hospice care for her. EvergreenHealth Hospice Services provided Nancy incredible, sensitive and wonderful care right up to her death.
Throughout our marriage, Nancy and I engaged legal professionals to draft – and periodically update – wills, durable powers of attorney, and physician’s directive documents. In the wake of her passing, I have reflected on how little time – if any – we spent actually talking candidly and transparently with each other about what quality of life meant to us, and what our wishes would when we approached our inevitable end-of-life journey. When Nancy was diagnosed with cognitive impairment, the window for that conversation had closed. In large measure, this was due to my being consumed with trying to figure out what was going on with Nancy’s evolving condition, and hurrying to “catch up to her disease”. In reality, it was a discussion we should have had prior to when the challenges of a crisis – her dementia diagnosis – descended upon us.
I am surmising – and I can only speak from my perspective and with the benefit of several years of reflection – that fear was involved in Nancy and I dancing around this conversation. Nancy’s mother passed away from dementia. My dad died in large measure from the affects of Alzheimer’s. So for Nancy and I, this discussion would have necessitated our coming to grips with the possibility we might face an illness where memory loss and cognitive impairment might result in our not recognizing each other. Where Nancy might not know her children. That if we experienced dementia, the end result would be certain death.
In his excellent book, “The Conversation: A Revolutionary Plan For End-of-Life Care” (Bloomsbury 2015), Angelo E. Volandes, M.D., notes that one aspect of the incredible progress in medical technology, ” . . . is the assault of medical interventions at the very end of life.” (p, 6) He goes on to state that a step towards a remedy for this is ” . . . a return to the oldest tool in medicine’s proverbial black bag: talking with patients about their wishes for how they want to live their remaining time.” (p. 6) With respect to the level of treatment one chooses to undertake, Volandes states: “The success of this essential conversation about end-of-life care lies not in the individual path chosen, but rather in an active and fully informed participation of the patient and family members.” (p. 7)
A seminal work on the end-of-life Journey is “Being Mortal: Medicine and What Matters in the End”, by Atul Gawande (Metropolitan Books; Henry Holt and Company, LLC 2014) In his introduction, Dr. Gawande states: “This is a book about the modern experience of mortality – about what it’s like to be creatures who age and die, how medicine has changed the experience and how it hasn’t, where our ideas about how to deal with our finitude have got the reality wrong.” (p. 9) He goes on to say; “Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.” (p. 9)
On our journey through life, we are presented with many and varied stages that frame our life experience: We grow up, move through puberty into adolescence, become adults, get jobs, have relationships with friends or significant others, and so forth. Inevitably we face into the complex emotions and feelings associated with transitioning out of a life phase – be that the end of a relationship, loss of a job, a divorce, or the death of a loved one.
The question that emerges with each such life phase is: how proactive, conscious and engaged are we as full, complete and authentic participants?
Through my experience with caring for Nancy, and as the result of my studies around end-of-life matters, I have become acutely aware that it is not enough for me to have the best and most thorough estate planning documents, as important as that is. The “legal piece” needs to be augmented with the following; Does my family understand what quality of life means to me? Do they know what is important and precious to me? Are they aware of my innermost and most significant values? Do they truly and really know what I want, need and desire during my the end-of-life journey?
So let’s get practical for a moment: You are ill and, as the result of cognitive impairment, are unable to make health care decisions for yourself. Your family is suddenly presented with a nuanced health care circumstance where it is not completely clear whether medical intervention is or is not appropriate. You can have the most complex and thorough health care directive and durable power of attorney for health care imaginable. Yet, if you have not discussed with your family, and especially your surrogate decision maker, what quality of life means to you, what you value, what is truly important to you – then decisions around medical intervention will be needlessly difficult and complicated. The family may literally become frozen in fear and indecision.
Here is a real life example that brought home to me the value of having “The Conversation”:
I was standing in the ER cubicle with Nancy during her June 2012 hospitalization. The attending physician explained to me that Nancy’s precipitous drop in blood pressure had been stabilized – for the moment. If, however, her blood pressure were to “crash” during the night, the doctor needed to know what level of intervention I was willing – or able – to authorize to correct that event. She went on to explain to me what seemed like a complex procedure that would need to occur, which involved a catheter being run up to and into her heart. I remember like it was yesterday the fear and anxiety that flooded through me at that moment. Yes, I had very comprehensive estate planning documents. And there existed an up to date “POLST” – Physician’s Order for Life Sustaining Treatment – which is a medical order. Yet none of that prepared me for the decision I was facing. I vaguely remember saying “yes” to the described procedure. The full seriousness of Nancy’s condition became very clear to me in this moment. I proceeded to call her three children – my stepchildren – and suggested they might want to come to the hospital ASAP. And, as I noted above, I enlisted hospice care.
What this experience told me, was how different it might have been had Nancy and I had an extensive conversation – before her dementia diagnosis – around what quality of life meant to us. And once we were clear around this, it might have been incredibly valuable for us to have had a family meeting with her children to talk further about this.
What is important to note, is that these conversations are meant to be regular and ongoing. Our lives move forward. Circumstances change. Our thinking and feelings around what is important to us – our intrinsic values and what we hold dear – change and evolve as we grow older.
As I share all this with you, I fully acknowledge that I am in my relative infancy in terms of translating into action my insights and understanding around end-of-life conversations.
So know this: It is never too late to wake up. Progress, not perfection, should be our goal.