The Exit Ramp Opportunity - A Mindful Approach to Dementia & Psychedelics
A few days after my husband, Henry, died, I was able to have a tele-health call with his primary care physician (PCP), and with her permission my two daughters were also present. The three of us sat at the kitchen table, looking forward to processing Henry’s death—though with dementia, from a physically healthy person to the point of death in less than two weeks’ time.
As the PCP got on the call, I thanked her for her instrumental intervention in being the conductor that helped orchestrate the death that Henry had wanted—at home and in peace. She was very familiar with his wishes. Over the last two years, Henry had expressed at each visit his reassurance that he was signed up with DIGNITAS—his fervent motivation was not to live in the advanced stages of Alzheimer’s. Then, less than two months before he died, Henry and his doctor, with me present, had an in-depth conversation about VSED, written about in a previous blog, and what happens in Switzerland with DIGNITAS. She explained exactly what happens to the body and mind when voluntarily stopping eating and drinking and then, with DIGNITAS, how barbiturates work to hasten death. Henry said he was seriously considering VSED, but the explanation about possible confusion, then losing consciousness for more days before actual death, seemed quite prolonged and difficult for Henry. As far as the DIGNITAS option, Henry did not like the fact that barbiturates are ingested in that scenario. However, taking the barbiturates would be quicker and less complicated than VSED. His doctor explained to us that with the barbiturates, you fall into a twilight sleep and then deep sleep, and then you are dead within about twenty minutes. A trip to Switzerland and the confusion and disturbance to Henry’s peacefulness found at home did not appeal to either of us. Yet it was plain to his PCP and to me that Henry was getting close to choosing one of the not-so-great choices he was about to make.
In fact, we had been moving forward with DIGNITAS. The doctor’s report from the visit to the neurologist just three days before Henry’s second trip to the ER had been sent to Switzerland just before the ER visit. A formal letter had been received two days before Henry’s death. In it, DIGNITAS gave permission to proceed. A date could be secured after certain payments were made.
In the end, I am glad Henry did not actively end his life in a way that he wouldn’t have wanted, but had felt forced to choose as an option to not living with advanced Alzheimer’s. In the interview with the neurologist, when asked if he was making an end-of-life choice for someone else, without skipping a beat, Henry replied with an emphatic, “NO!” From his very depths he did not want to live without cognition or in a state of total care by others… potentially lasting years.
He stated clearly to his PCP that he wanted his cognition as long as possible. It turns out that in the last 56 hours of his life he was off all medications and he was pain-free. Not only did he have the full potential of whatever cognition he had, he fulfilled what he really wanted: to die at home in Vermont.
When I was exploring medical aid in dying, known as MAID, and legal in Vermont for any US citizen that is eligible under the law, known as Act 39, it became glaringly clear that Henry was not eligible. I spoke to lawmakers, EOL advocates, and even lawyers. The answers I got were unified in supporting Act 39 as it is. “Do not mess with it. It took years to get Act 39 into law. If you try to include dementia or Alzheimer’s, you may be risking Act 39’s standing,” I was repeatedly told.
It seems immoral that people with dementia cannot access a dignified way to die in the US. In Canada, on the other hand, people with dementia can access MAID. Patients must be in an "advanced state of irreversible decline" and retain the capacity to consent at the time of the procedure, or use a "waiver of final consent" while still capable. This seems logical and humane. I hope a similar rationale can be used to include people with dementia to access MAID in Vermont and other states in the near future to access their right to die with dignity.
With the PCP’s permission, my daughters joined in the telehealth conversation. We even had the doctor’s permission to record the conversation. The overriding gratitude we felt was clearly expressed, but we also wanted to process what had just happened. The doctor welcomed us to ask any and all questions so we could make better sense of it all. Questions about his pain, how it wasn’t managed, then managing it, then not needing medication were asked. The mishaps in the ER as well as mix-ups delaying medications being delivered were chronicled. Why did she think to mention hospice just two days after the second ER visit?
That’s right. Two days after the second ER visit, speaking on the phone with the doctor, she said Henry could consider stopping the antibiotics, and nature could take its course. That was a shock to hear. I had not even considered what that fully meant. I was just thinking how Henry could get through a few more days with a catheter before the scheduled visit to the urologist, and I wanted to better manage his pain, which was excruciating at times and also caused terrible confusion. I only had two days to let that information settle in before the hospice visit for the evaluation to determine Henry’s eligibility for hospice. I knew hospice is not just for imminent death. I knew palliative care and hospice also help with conditions that are not curable, sometimes lasting years. On the day the hospice nurse arrived, I did not think my husband would be dead in a week’s time.
“Two reasons I asked for hospice,” the doctor replied. “The first was to get another set of eyes to manage his discomfort,” she said. Then the doctor explained her second reason for getting hospice. This is the most astounding, revealing, potentially empowering idea for others—too late for me or Henry—and brought me to question how things unfolded. The doctor went on to explain that within the medical world there is a term that is used: THE EXIT RAMP. She thought hospice would either help Henry “rebound,” or he would find the “Exit Ramp.”
Finding an Exit Ramp is a totally new concept for me, but one that my daughters and I know Henry not only looked for and found, but one that he somehow orchestrated. He did not want to go to Switzerland. He did not want to have advanced Alzheimer’s. Perhaps all our proactive research, the ongoing discussions about death and end-of-life we had over the last almost ten years and shared in the blog over the last year and a half, all contributed to a certain degree of willpower and intentionality that came to fruition in Henry’s ultimate death of natural causes at his beloved home in Vermont.
Both my daughters recounted, in the days before his death, that their father had explicitly stated he wanted to die in the winter, before the end of February. A little over a year ago, while taking a walk with her father on the beach in Mexico, my eldest said her father had shared that wish with her. My other daughter, reviewing her journal, had an entry three months prior to his death in which she wrote down her father saying something similar. I, too, shared in a blog (“Preparing to Die...or not. At Least Not so Soon”) a few months back in which Henry stated that he wanted to use these winter months to prepare to die, most likely by the end of January or the beginning of February. And he did just that—he purposefully embraced the spirit of “going within” that the cold, wintry months bring. The natural season of interiorizing supported his motivation to be in silence most of the day, to read only spiritually inspiring writings, to sit in meditation, chant his mantra with his mala beads at least twice daily on a daily basis. He actively prepared his spiritual nature to prepare for death.
Since marrying forty-five years ago, this spiritual nature had been actively nurtured and was a major part of our marriage, but the last few months were specifically in preparation for life’s transition from this world to the beyond. The growing quietude that nurtured a peaceful, supportive silence, that ushered in a grounding force from within but connected to something greater, became more palpable as the winter months progressed. A settling in of sorts was supported by the snowscape that remained a constant. The subtle mottled colors from early dawn twilight to the night’s clear skies of starry brilliance were the bookends to each day and night.
Henry accomplished his goal. The morning before hospice arrived, Henry was resting comfortably on the living room couch with the soft pinks and celeste blues of the day’s light. As I had walked by him, I felt the distinct scent of death. It was a deep knowing: death had arrived. When he spoke to me a few hours later, the air was clear and spacious. Yet my deep knowing was lodged where I knew it to be, in its place. It was a knowing and a scent, maybe a scent not smelled physically but still a scent that came with death. The time had neared.
A few minutes later, ever so quietly, Henry whispered to me, “This is a good place to die.” I assured him that it was. He then went on to tell me to be sure there were fresh flowers. He instructed me with the photos and meditation objects he wanted to be placed near him. Besides immediate family, he asked no one else to come except two people—one a Buddhist scholar and teacher, but more importantly the one person nearby that had a silent, deep-seated mutual connection. And a long-time friend, an Episcopal priest who did come, read to Henry and anointed him. This ritual, occurring when Henry was just beyond coherent words and had stopped eating and had almost stopped drinking, seemed to open a gateway that ushered in a welcoming of what was to come. Rituals can matter, I witnessed. And our Buddhist scholar friend, arriving late at night post-meditation retreat he had led, sat to meditate next to Henry. By then Henry felt beyond this world, and in that special quietude that comes in the midnight hours, I am sure the two of them connected energetically where quiet hearts and minds can meet.
But back to the morning before hospice. It was after the hospice visit that I told my daughters that their father had voiced his acceptance and readiness to die. I had even captured the 2-minute recording of his requests and obvious (to me) acceptance of what was to unfold. They wanted more reassurance that he knew what he was about to do. They wanted to hear his consent. They wanted him to say, “no more antibiotics.”
Miraculously, the following day we had a 45-minute conversation that we also recorded. My daughter in Toronto was on WhatsApp while Henry and my other daughter lay comfortably on the bed, and I sat at a distance as I listened. It was not easy to have someone who had been in terrible pain and confusion have a cohesive conversation, but my daughters’ skillful listening allowed for Henry to come close enough to state what he wanted and even more clearly state what he didn’t want. The gentle questioning to bring his heart’s calling to light was clear enough for all of us to embrace a most precious moment of welcoming death as a friend.
I believe all these elements—from the recent years to the moment at hand—converged so that the dying process could be held in love and support. I believe there was power in that conversation that empowered Henry to move forward in his dying process, to embrace his deepest sankalpa, his heart’s desire—to die at home, with his fullest cognition accessible, to direct his process surrounded in peace. It was like an energy shift not just for him, but for my daughters and me as well. We were all on board, navigating new territory together, to the best of our hearts’ compasses.
I mentioned to the doctor during the follow-up telehealth call that I believe Henry died a perfect death. She quickly answered, “Perfect is different for everyone.” Indeed, how wise she is, for I cannot say what others may want. I do know it seemed perfect for Henry.
Yet I cannot help but wonder, if his doctor had not had those conversations with Henry around end of life, had she not had the phone call from me two days after the ER when I expressed helplessness in managing my husband’s pain and confusion, if she hadn’t been so skillful in her sensitivity to supporting life’s transitions, his seemingly perfect death may not have occurred.
I keep mindfully contemplating the concept of Looking for an Exit Ramp. I keep reviewing what happened in the ER. Had I been equipped with the understanding of Looking for an Exit Ramp, I could have insisted on managing my husband’s pain while preventing antibiotics from being administered. To do so would have meant that, as a caregiver, I would have been on the lookout for any opportunity to use as an Exit Ramp. These opportunities are exponentially more important for someone who has dementia or Alzheimer’s and does not want to live into the advanced stages.
In the end, Henry’s dying was a gift to himself. It was also his gift to me. I feel like I am the lucky one. I give great gratitude that Henry took advantage of the Exit Ramp opportunity. He knew and orchestrated something I had not even been aware of. I had spent the last few years researching, planning, and putting into place many supports and eventualities for the Alzheimer’s journey, which included taking care of me, the caregiver, as well. Henry was an active participant in those years of planning and ongoing discussions about end-of-life. Henry gained clarity on what he did and did not want. I believe this helped create the ending of his journey, perhaps even actively looking for an Exit Ramp opportunity.
The importance of actively looking for an Exit Ramp is profound. If it can help create an end-of-life choice, then I want to be an advocate to bring this possible option to people’s attention. I had written about the presentation in which Dr. Thaddeus Pope spoke about end-of-life choices. I reached out to him to include Looking for Exit Ramp Opportunities so that caregivers like myself can be prepared and have the ability to use their legal rights when an opportunity does arise. Tune in to Dr. Pope’s talk here to learn more.
Did Henry orchestrate his final days? Did Henry orchestrate his death? I can only wonder if it were so. What I do know is that he had been preparing for death the way he lived for decades. His polestar was to nourish a spirit that soared when in silence, when in nature. When working the soil in his garden, when being of service throughout his career and dedicating his professional life to making the world a better place, and certainly in the thousands of hours accumulated over daily inner practice—of meditation, devotion, prayer, and inner focus connecting to the beyond—longing for the ineffable, a yearning from the depth of his core. In physical death, I believe Henry has been reunited in that Greater Home.
- Lauren Alderfer, PhD.
