All of the Death With Dignity (DWD) laws now in the US are modeled after the Oregon law that went into effect in 1997. The other jurisdictions that have adopted such a law include Washington, Vermont, Washington, D.C., Colorado, California, and Hawaii. A judicial decision in Montana allows DWD to be practiced with cooperating doctors.
Missing from all of these laws is the right of people who have specific kinds of incurable, debilitating, painful, or extremely distressing medical conditions, but are not necessarily within six months of dying, to use these laws. Among such conditions are some forms of ALS, MS, dementia, Parkinson’s, Huntington’s, unrelenting mental illness that does not affect decision-making ability, or a constellation of irreversible medical problems which cannot be cured and from which the person no longer is willing to suffer.
Most such patients are ineligible because all of the DWD laws require that the patient have a six-month terminal prognosis. When that prognosis comes for such people, they may be unable to make use of a DWD law because of the requirement that they be able to swallow a large number of pills when swallowing is difficult, if not impossible; or because they are no longer able to feed themselves as a result of the progression of the disease from which they suffer. This is the problem facing one such MS sufferer, Maia Marie Calloway, pictured above.
Maia recently shared her story with the Final Exit Network (FEN) and gave FEN permission to tell about her struggle. Almost two years ago, Maia traveled to Switzerland to explore the possibility of seeking a death with dignity with the help of Life Circle, a Swiss right-to-die organization that provided her medical assistance while she was in Zurich. Maia has provided us much of her story in her own words, lightly edited.
I had seen the documentary “Choosing to Die” by the late Sir Terry Pratchett and indeed, watching this film many times from my sick bed gave me great comfort. The illness was traveling down my brainstem and cervical spinal cord and robbing me of much of my movement and sensation. I googled various key phrases during these four years but the one that got the best results was how to die peacefully. I discovered that there was a different way of thinking about this and that there was nothing morally wrong for me choosing to end the suffering before the illness took me and before the AMA and the state decided I was sick enough to have this option.
This is a disease that takes your life piece by piece, but never actually kills you. It is like being buried alive. Progressive MS is gruesome. It is slow and it often feels like everything that I was was being erased. And in the most advanced stage, I had seen friends confined to beds and chairs who could not move or communicate and were forced to live an existence that I would wish no human being to ever endure, sometimes for years. I knew that I would not let this happen to me. It could not happen to me. It went against everything that I was in life before this illness, which was always about freedom and self-determination.
Despite the religious, fanatical and superstitious background I had been raised with where everything is Karma that must be cleared away to purify your soul, and “God owns your life, so he is the only one who can take it.” I saw myself on the threshold of having to revolt from this indoctrination that I had come from in order to break free and end the suffering. There were some kind people along the way who helped me with this guilt about my relentless quest for “the good death.”
Maia reached out to other people with quests similar to her own to learn about not only the DWD resources of Life Circle, but those made available by Philip Nitschke’s work, FEN, Dignitas, and compassionate doctors in Latin America, including in Mexico. She became acquainted with the information in Final Exit and The Peaceful Pill Handbook. She learned about how some people had acquired Nembutal to help them hasten their deaths when the time came to put an end to their suffering. But her journey was not without its own perils, real or imagined.
Many of us felt like criminals in these online chat rooms trying to procure these methods in secret and already with these slow cruel diseases, trying to smuggle substances and potentially getting in trouble with homeland security. On secret forums I had learned that one woman with Parkinson’s who had been suffering for 14 years had secured her poison only to be visited by the authorities and forced to surrender the only control over her own fate that she felt she might have.
In the fall of 2016, Maia traveled to Switzerland to meet the organization Life Circle, making preparations for the good death she could not secure legally in her own country. She travelled alone, leaving behind the things that gave her some comfort – her familiar apartment, her loved ones, and her tabby cat. She could not disclose where she was traveling to and why. Friends she had confided in were afraid to be associated with her decision and involvement with Switzerland and euthanasia. Discussing these matters with them exceeded their comfort levels, a problem too many Americans have with death and dying.
In Zurich, she was picked up by representatives of Life Circle, who provided a comfortable medical van for her to ride in, and morphine for her pain, the first time her pain had been adequately treated. She was evaluated by a kind and compassionate Swiss-German doctor, who even offered her an apartment to stay in if she wanted more time to consider her options or was concerned that she could not make the journey back. Maia found this organization “of good people” were more supportive of her desire to end her suffering than her own doctors and family back home.
While waiting in the hotel in Zurich for the Swiss doctors to show up, she felt lonely because her family was not with her and didn’t even know where she had gone. She was comforted, though, by the “kind and humanistic and compassionate people” she had encountered in Switzerland. The contrast with the American doctors with whom she had dealt made quite an impression on her. Unlike in America, no one suggested psychiatric drugs or behavioral health units. After her long journey, she had secured the provisional “Green Light.” But she felt like “a suicide tourist without a home.”
In a letter in early 2016, Maia explained how MS has affected her:
I suffer from a severe form of Progressive Multiple Sclerosis with the burden of disease in my spinal cord and brainstem. Almost every segment in my spinal cord has a demyelinating lesion. The lesions range from C-2 to T11. The symptoms that I suffer from on a daily basis range from loss of control of my torso, legs, severe intractable pain as if my organs are folding in on themselves, electrical pain as if my body is being stabbed all over and is on fire, profound fatigue, loss of sensation, severe dysfunction with my autonomic nervous system, pain when moving my breathing muscles and a host of memory and cognitive problems that prevent me from having the mind that I once had.
I have had MS since probably 2002 when I had a short episode of optic neuritis and lost the sight in my left eye as well as Lhermitte’s sign*. For years, I was dismissed as having a “somatization disorder.” I was ushered back and forth between psychiatrists and put on dangerous medicines that caused me a lot of harm. As a result, I failed to get treated for the disease that I did have in time. My diagnosis was not confirmed until 2011 when I went into a chronic and progressive downward slope. It has been like being erased. Everything that I was and many of my abilities. I am losing all that I am.
I lost my career in the entertainment business as a production and post production artist. The ability to work in my profession was life itself. It was my passion and everything that I lived for. My life is now waiting for caregivers and social services. Going to doctors that never help me to get better. They always say “We have new medications coming down the pipeline…” But how will that help me reverse 14 lesions in my spinal cord? Despite aggressive treatments that have involved chemotherapy agents at the University of Colorado from 2013 to the present, I have rapidly declined.
My family and friends no longer recognize me for who I was. When I was younger and healthy, never could I have conceived of an illness being this cruel. It has given me great compassion towards so many people in states of suffering that I didn’t even know could exist. Incurable illnesses where there is no end near in sight. There must be a way out for us and compassionate systems in place.
My day to day existence is one full of intractable pain and physical suffering. In addition to these things I have mentioned, I cannot have a relationship or carry a child due to the progressive loss of function in my body involving spinal cord deterioration. Second to losing my career as a filmmaker, this has been the most devastating aspect of my disease as I am still a young woman in my mid-thirties.
In the past six years since entering into a chronic progressive course of MS, I have sought out many clinical trials, studied scholarly articles on neuroimmunology and written hundreds of correspondences to researchers all over the world as well as experimented with different diets and alternative therapies. Much to my sadness, the treatments that will bring people out of severe disability involving myelin repair and stem cell are still years away from being available in a clinical setting. Nothing has even stabilized my disease, let alone improved function and quality of life. I cannot be cured. I cannot even be helped to feel better.
Is it any wonder that Maia is seeking relief from her unremitting, irreversible suffering? But none of the DWD acts in any state in the US can help her. This is a form of discrimination that should be remedied. While Maia has not reached the point where she is ready to hasten her own death, she knows that time will come, and when it does, she will not receive the equal protection of the law, nor will she find the due process also guaranteed by our Constitution. The seven DWD laws we now have in the US have created important rights for some hopelessly ill patients, but many others are left to suffer deaths that no one would describe as good.
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*Also known as Lhermitte’s phenomenon or referred to as the barber chair phenomenon, often described as an electric shock-like sensation that occurs on flexion of the neck and radiates down the spine, often into the legs, arms, and sometimes to the trunk.
Thank you for this enlightening article, Lamar Hankins. My friend’s daughter, 54, was diagnosed with MS at age 38. She struggled mightily to live independently, and like Maia in the story above, did all kinds of clinical trials (including stem cell treatment) but nothing stopped the progression. For the last year of her life, she lived in her wheelchair at home 24 hrs per day(vehemently refusing to live in a nursing home because she had been to several which also serve as rehabilitation facilities after hospital stays. She stayed in her wheelchair, including sleeping at night. She was just over the Medicaid income limit so she paid for help which came 2x day to help her use the toilet. She contracted skin ulcers (bed sores) which required debridement and other painful treatments, eventually resulting in sepsis acquired in the hospital which finally killed her two months ago. At one of her hospitalizations, she asked her mother if I could come and talk to her about options for ending her life. So I went to her hospital room in Arlington, Texas, and told her of FEN, but she was incapable of acquiring the necessary materials and carrying out the actions. I told her that unfortunately, her only option might be to take the same route as Diane Rehm’s (NPR host) poor husband who suffered with advanced Parkinson’s. He stopped eating and drinking for nine days until death occurred (barbaric IMHO, though it’s said that this is relatively painless). I appreciate your ongoing attention to the subject and your efforts to make a good death a possibility.
YES! Excellent article. Thank you. “Terminal” is SUCH a narrow category, and not entirely clear anyway. Many cancer progressions are pretty clear, and untreated AIDS, though in the US that is rare these days. But doctors can’t or won’t pronounce terminality much beyond that framework. SO many people with neurological conditions or heart deterioration are left to suffer with the end far away. Dammit, if you want or feel you must suffer every last machine-forced breath then do so, but don’t demand that I do! Gad these religious fanatics and controllers of other people’s lives. We have so far yet to go.
In 1964 I woke up totally paralyzed on the right side, which was diagnosed as a stroke until my eyes crossed in a cockeyed way and spinning sirals and jiggles blurred my vision, then it was diagtnosed as multiple sclerosis. I have been leaving nursing homes against medical advice since 1989 because life is of no value to me unless I have the freedom to choose, and
to Direct my own life.
Maia’s courage and grit in facing her terrible disease is admirable. But her determination to give meaning to her life, by sharing her story with others, is inspirational. You go girl!
Agree completely. This concept that others have a right to determine whether we”qualify” to end our life is insulting and infantilizing. While I agree there probably should be some limitations (competency, perhaps a waiting period), everyone deserves the right to choose to end their life and get help to make it happen.
This is very sad and it only gets worse. Here in Colorado people with life debilitating illnesses such as MS, ALS and others live on the streets dying slowly and painfully with no insurance or family. The religious fanatics believe not to interfere with “GODS WILL” by offering any assistance to these poor souls.