“Live free or die.” I strongly support the first two words of New Hampshire’s historic state motto. The first two words, “Live free…” clearly declare the state’s endorsement of choice. Everyone deserves the right to die on their terms. However, there is a lack of freedom that ailing, suffering, New Hampshire residents have with regard to their doing so.
Dying is living, the last part of living. My fervent wish is that we honor and respect dying as a part of the life cycle, thereby allowing for more peace of mind and comfort at the end of life. We can do so by expanding care options available to New Hampshire’s terminally ill residents – specifically the option of medical-assisted dying with dignity.
I am an 85-year-old New Hampshire resident suffering and in the process of dying from a rare cancer called lymphoplasmacytic lymphoma. If I had the option of medical aid in dying, my current struggles might have been minimized substantially. I emphasize the word option, not the practice of medical aid in dying per se. The two are integrally related. Choice, however, is key to understanding of both.
Before proceeding further, I want you, my reader, to know more about me. For 46 years, I greatly enjoyed my work as Professor of Psychology at the University of New Hampshire. There was hardly a day I did not look forward to working at the University. I cannot imagine a more gratifying, challenging and fulfilling career.
It took some years for me to find my dear wife, Susan. The time and wait, however, was well worth the prize. Together, Susan and I have created a wonderfully loving 35-year relationship. Sigmund Freud remarked that the two most important life tasks are work and love. For both, I hit the jackpot!
With regard to work and love, and many of life’s other pleasures, I have been blessed. For the most part, I have had a wonderful, pleasure-filled, exciting life. That is, until recently.
Unfortunately, the past year has been very difficult, indeed, largely a living hell, filled with many health problems that include cancer, heart disease, a large number of hospital visits, medical appointments, laboratory testing, as well as endless hours of sitting and waiting to see doctors and other health professionals, many of whom chronically run late.
The above health problems have brought on various daily challenges and difficulties: chronic shortness of breath (requiring 2x/week drainage from each of two chest catheters), a greatly reduced exercise regimen (walking 3-4 miles at a good pace 3 months ago, now down to 1-2 miles at a snail’s pace), and hearing and vision problems that often cause much stress as I try not to miss important cues and information when engaging in daily tasks and conversations.
My daily life includes pain, struggle, little to no energy and not much pleasure. My favorite activity is going to bed at night with my wife, my least favorite activity arising to meet the day.
I retired from my career when I was close to the “top of my game.” My hope is to end my life similarly. I strive to avoid the pain and suffering that may be inevitable in my last days. I want my friends and family to remember me as they knew me during my more vibrant healthy moments. Equally important, I would like the freedom, the choice, to decide when I have endured enough.
I want to live out my life with sufficient quality to justify letting nature (and cancer or other unforeseeable events) determine my fate. I have always prized quality over quantity of life.
In New Hampshire, lacking the option of medical aid in dying, I have three avenues I could pursue to retain some control in my end-of-life journey. Since all patients have the right to have any treatment be discontinued, I can request my pacemaker (PM) be deactivated. I can also have fluid drainage from my lungs be discontinued. And, I can voluntarily stop eating and drinking (VSED).
With each alternative, there are complications. VSED can be a long drawn out and occasionally a painful process. Presently, my wife, Susan, drains my lungs. Stopping doing so would clearly cause my death by suffocation. Even if given comfort medication, never would I want to put her in that position.
Regarding PM deactivation, my cardiologist, after a few dodge-and-duck talks on the subject, finally, with my direct questioning, acknowledged that, for ethical and religious reasons, he would not deactivate my pacemaker. Another physician suggested I deactivate the pacemaker on my own using a magnet I purchase from a hardware store. Since a medical professional implanted my PM, why is it not a medical professional doing the deactivation? Why is it me who, with a magnet, discontinues the treatment?
If I lived in a state where I had the option for a peaceful, medically-assisted death with dignity, I might have avoided many of the difficulties described above. Arranging for a peaceful death in New Hampshire has been anything but easy.
Five years ago, chatting with a friend at the side of a trail, an out-of-control, hit-and-run skier (or snowboarder, I do not know which) slammed into me. The accident resulted in my being unconscious for 20 minutes, 18 broken bones and an ambulance ride to a hospital for a 10-day stay. Fortunately, I had a fairly full recovery and was back on skis a year later. I mention this ski accident, because, over the past year, I have been unable to extricate from my mind the thought: “Oh, how I wish the hit-and-run skier/boarder had taken me completely down and out, ending my life.”
Such a death, for me, is much to be preferred over the very gradual, typically imperceptible, seemingly never-ending decline through more and more health difficulties, behavioral and cognitive compromises, on and on with increasing pain and suffering.
Here again, I use and emphasize the word option. Simply having the option of aid in dying, even if I did not exercise it, would give me peace of mind. This past year, living in New Hampshire, I have experienced little peace of mind.
The fact that we give a person choice all through their lives and then eliminate options and choice at the end of life has been weighing on me more and more since I enrolled in hospice a few months ago. It is wrong to focus solely on the procedure (medical aid in dying) rather than the important palliative effect that end-of-life options, self-agency and peace of mind, provide.
I believe the residents of our beloved state deserve better end-of-life care options, particularly, medical aid in dying or again, more importantly, the option of dying in peace. If I lived in either two of our neighboring states – Maine or Vermont – I would have far more peace of mind than I have experienced the last few months.
I began my story with the New Hampshire State motto, ”Live free or die.” I indicated support for the motto’s first two words, ”Live free…” All of what I have said above aligns with these two words. The third word, ”or,” on the other hand, encourages dualistic, simplistic, polarized thinking.” “And,” promotes more complex thinking, inclusiveness, openness. My preference is that the New Hampshire motto be revised: ”Live free and die — peacefully.”
A bioethics principle taught to medical students is prenun non nocere, the Latin phrase for, “First, do no harm.” Disallowing choice for a more peaceful death is doing harm to New Hampshire’s terminally ill, distressed residents. Surely, we in New Hampshire can do better than this.