People with disabilities struggle with the US Social Security Administration, which many say keeps them impoverished.
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A few years ago, I spent a lot of time in bed. I had developed holes in my dura – the thick covering that surrounds the spine and brain – that were leaking cerebrospinal fluid. Every time I would sit up, I would get hit by a wave of dizziness and nausea, and the pain in my head from low brain pressure would become unbearable. Many times, I would faint, passing out on the floor or in bed.
My world began to shrink, until it was just me, a dark, cool room, and my husband and young daughter popping in throughout the day – my husband to ask if I needed anything, my daughter for anxious hugs. I had gone from being a pastry chef, newlywed and new mother to a life that felt terrifying and meaningless. My brain began to shrink too. Conversations were painful, sunlight was excruciating, even reading a book became impossible. My brain, thirsting for cerebrospinal fluid, the blood of the brain and nervous system, was being squeezed and sucked down into my spinal canal at the base of my skull, causing all kinds of nasty neurological symptoms. It took years to be properly diagnosed, and more years on top of that to be successfully treated.
Every single day, I felt like a burden. The pain never relented. Many of those days, I wanted to die.
My life is exponentially better now. I am no longer suicidal and have no remaining ideation. But I do still think a lot about the ethics of suicide – and especially of medical aid in dying (MAID), a practice legal in a small but growing number of states which allows a doctor to write a fatal prescription for a sick person who feels sure they want to die. Different from euthanasia, which is something done to you by a medical professional, MAID you do yourself. Though my own state of Hawaii legalised the practice in 2019, I feel a lot of cognitive dissonance around the subject.
I have progressive, degenerative conditions and live with severe pain. I have spent a lot of time in the hospital, and it is not a life I would want for myself long-term. Home care is great, but some pain is intractable. And I know from experience how chronic, severe pain can rip every part of your life to shreds. Who is to tell me that I cannot end it when it becomes too much, especially if I develop a terminal condition and am already dying? Have I not lived in this body long enough to know when I am ready? And if I make that decision, why should I be denied medication that can help me die peacefully? If something is inevitable, is it fair to make a person suffer while they wait for it to happen?
I decided I wanted to know what it would mean to choose to die with the help of my doctor under Hawaii’s MAID law: the Our Care, Our Choices Act. I spoke to death doulas, lobbyists and doctors, and one man who operates in the margins of the law by helping people learn how to end their lives. His organisation, the Final Exit Network, works with people who do not qualify for MAID laws. I wanted to clear up the internal conflicts I had about balancing individual rights and our society’s duty to care for its members.
Dying of despair
Americans are not good at dying. We are good at charging exorbitant amounts for end-of-life care: tens of thousands a month for nursing homes, intensive care units in hospitals, and hospices. We are good at making people pay through the nose for funerals. We are not proficient, however, at providing the support a person needs to die a good death. (Frankly, we are also not good at providing the support people, especially disabled people, need to live a good life.) People are afraid of dying in this country because, for many of us, it occurs away from family and friends in a hospital or institution. With more and more of us claiming no religious affiliation, we are also losing the community support we used to receive from fellow congregants and the spiritual rituals that can be comforting during the dying process.
The disability rights movement is stridently opposed to any form of physician-assisted death, including medical aid in dying. They say that, until we have a better social safety net, there will be people who decide to die, not because it is their time but because they cannot afford to live decently. Or because they feel like a burden. Instead of allowing disabled people (as an activist I prefer to use identity-first language) to die, they say, we should be addressing the internalised ableism that makes them want to.
This opposition means they also oppose limited laws like the Our Care, Our Choice Act in Hawaii, which allows terminal, mentally competent residents with less than six months to live the right to request medication that will end their life. It is the beginning of a slippery slope, activists say. Many disabled people have been told that they were terminal, but are still alive decades later. In January in Canada, a 35-year-old father named Chris Gladders died with medical assistance in a filthy room in a nursing home that investigators found to be poorly managed and neglectful. Disability rights advocates held the case up as an example of exactly what they were worried about. If he had been able to live at home, with his family and skilled care, would he still be alive today? Did he die because he had a difficult, progressive medical condition, or did he really die from despair and lack of care?
The National Council on Disability (NCID) strongly opposes MAID and has produced a 70-page document (PDF) that outlines its concerns. These include insurance companies that have refused to pay for possibly life-saving care, but that did offer to pay for much less expensive lethal drugs. The Council also argues that medical science is not perfect and that disabled people are sometimes called terminal when they are not. People considering MAID may be living with demoralisation, caused by the internalised feelings that they are an expense or a burden to loved ones. Most physicians are not trained in recognising or addressing demoralisation in their disabled patients. Instead, these physicians may reinforce those feelings by conflating disability with a terminal illness or poor quality of life.
In recent years, in response to the opioid epidemic, the Centers for Disease Control and Prevention (CDC) has been cracking down on the prescription of pain medication – even though the treatment of pain is considered a civil right. As a result, it is easier for some people who live with severe pain to obtain deadly MAID drugs than to obtain opioids – the only type of medication that may help with their pain. What disabled people need instead of aid-in-dying laws, the Council suggests, is adequate long-term care. Palliative care and pain medication that is fully funded and easily accessible. Home health aides that are affordable or paid by insurance. Instead of being encouraged to die, we need the ability, through support, to live the best life possible.
‘Would I still be here now?’
Brian Ruder believes that a person should have a civil right to end their life on their own terms. He is with the Final Exit Network, a nationwide organisation that provides training for people who want to end their life. Clients do not need to be terminal. To request FEN’s services, you must write a letter and send in your medical records to be reviewed by a board of doctors. Many people who work with FEN are in the early stages of dementia and are not eligible for MAID in the states where it is legal. A few years ago, FEN flew a volunteer to Hawaii to help with someone’s “exit”.
When I called Brian to talk about it, he insisted that FEN does not assist or encourage suicide, but only provides information about various possible methods. I found it hard, however, to understand how a volunteer flying out to Hawaii to give a lesson about dying to someone who may be suicidal is not encouraging the act. He also said that FEN does not accept people with mental illness. Not yet, anyway. And he stressed that the group turns away applicants whose families are not on board, as well as people with severe medical issues who do not think they are within a year of wanting to die. These people are given a reference to a suicide how-to book. They are not given a referral for mental health care.
I asked Brain whether he thought I would have been a candidate for FEN’s “self-deliverance” help a few years ago when I was suicidal while experiencing painful cerebrospinal fluid leaks. If I had known about FEN back then, would I still be here now?
“Maybe,” Brian said. The medical board would have had to review my letter and medical records. While FEN does not approve people with solely mental health issues, they do not see depression as a barrier to approving people who also have serious health problems. He seemed to dance around my question a bit, but I got the impression that, if I had asked for FEN’s help to die, I probably would have been accepted.
“People want to use our services because they’ve run out of options and the quality of their life is going down,” Brian said. “They’ve just decided they’ve had a complete life, and they really are ready to die.”
Brian seemed like a nice guy. Like he would be a good grandfather. My disabled friends would call him a serial killer. I left the interview feeling very uneasy. That feeling has not gone away.
Bobbi Bryant and Dr Charlotte Charfen live on the Big Island of Hawaii. They are part of a network of what are known as death doulas. This role is different from what hospice volunteers do. Doulas participate in lengthy training, learning techniques for guiding a person through the final stages of their life. They coordinate with the client’s doctors and other medical professionals and provide non-medical comfort care, such as leading relaxation exercises to relieve anxiety and help with processing the anticipatory grief of their fast-approaching end.
They may help with the medical powers of a lawyer, drawing up a simple will (or a referral to an estate planning attorney), and bringing together family members and friends to say goodbye. End-of-life doulas help people make sense of their lives and find meaning in their last days. Sometimes, if there are unresolved traumas or issues with family members, doulas can help facilitate forgiveness. When the client dies, a doula may help the family members wash and prepare the body for burial.
If the person is curious, they will explain Hawaii’s medical aid in dying act, while also discussing other options, such as palliative and hospice care and VSED (voluntary stopping eating and drinking). Charfen and Bryant both stress that they are there to support their client and not to influence them in any way. They say the law has had an unexpected, even paradoxical effect. Rather than helping people die, knowing that it exists as an option often gives them the will to live. They say many people who initially come to them with questions about MAID, intent on dying as soon as they can, instead decide to stick around a while longer. They decide that there is still work to be done; still life left to enjoy. For some, having the MAID prescription in hand eases their fears and anxiety. They realise that there is support available to them and feel cared for. Some live for months or years longer than their terminal date.
Dr Charfen (she prefers to be called Dr ChaCha) is a longtime emergency room (ER) doctor from the mainland. She deals with life and death every day at work, and then, in her spare time, she consults with people who are dying through her nonprofit, Life and Death Wellness. Bryant was a hospice worker and volunteer for years. She has left hospice work to run a company called Inspired Endings, where she trains death doulas and takes on clients. They both say they felt called to end-of-life work.
Dr ChaCha and Bobbi Bryant work hard to help guide people through good deaths. It seems that it is very difficult to ignore the fact of your eventual death and also to have a good death. There is work that goes into it, work that should not be done alone.
The disability activist in me rises up at this. We should all have this support. There is something very wrong with our society that we don’t.
Since Hawaii passed the law in 2018, the doulas have helped several people who have wanted to utilise medical aid in dying. Some lost full mental capacity and so became ineligible for MAID. Others died before they decided to use it.
One client was a middle-aged woman with a young daughter. She had worked on end-of-life care teams along with Bobbi. When she was diagnosed as terminal, she contacted Dr ChaCha to ask for help to utilise MAID. The woman had long talks with her friends and family about her desire to get the prescription. “There was a lot of introspection and work about what it means to die,” Bobbi said. “It was an experience of what I call conscious living and conscious dying.” On the day of her death, the woman gathered together with Dr ChaCha and Bobbi, with her friends and her daughter. They sat in a circle before an altar and told stories, and said goodbye.
The woman drank the first medication, which protects against nausea, mixed in apple juice. At this point, the process can still be stopped. Thirty minutes later, she took the first of two bottles of lethal drugs, which stop the heart. There is no going back after this. (What does it feel like at that point of no return? I wonder.) Half an hour later, the woman calmly drank apple juice, mixed with more drugs. She slipped into sleep, surrounded by her friends and daughter. Several hours later, she died.
This type of death is what MAID advocates point to as an example of an “ideal” experience. It seems pretty great to me. But from my research, it may not be the usual. Many people who say they want MAID end up dying before the 15- to 20-day waiting period is up. Many slip too far into dementia to even remember that they wanted it. For a person with a degenerative condition such as ALS, which affects their ability to feed themselves the medications, they face the dilemma of whether to end their life earlier than they would prefer, giving up valuable time with loved ones so that they can die with medical help. The patient must be able to self-administer the medications. It is illegal for a doctor, family member, or anyone else to feed the person the medications, and breaking the law can mean being charged with manslaughter.
Peace and gratitude
When I was in my mid-20s, my great-grandmother Artie gave me a gift. I had learned that she was dying, and so I flew to Texarkana to say goodbye. When I arrived, Artie’s bedroom was full of family who talked to her and sat with her while her body slowly shut down. I offered to stay with her for a while so everyone could take a break. Artie looked small and ancient, unlike the plump grandma I remembered from childhood visits. There were no tubes or monitors or other medical paraphernalia in the room. No nurses or health aids bustling around. I sat down next to the bed and smoothed her hair back from her forehead. She was not conscious, and her breathing slowed with each breath. Then, I heard a rattle deep within her chest. Somehow, I knew that this was the moment of her death, and I had the strangest feeling that she did not want to go. I held her hand, and cried, and told her that it was OK to go. She never took another breath.
I sat there for a few minutes, just trying to get my bearings. I was tired from the flight and dreaded having to tell the family. I was filled with a strange sense of peace and gratitude that Artie allowed me to be with her. Later on, as my health deteriorated and I became bed-bound with severe pain and very depressed, I would think about how I wanted to die. I had seen news shows about euthanasia, and I have to admit, I was intrigued. But then I would remember my great-grandma’s death and realise that is what I wanted. I want to die at home, in my old age, with loved ones close, without tubes or machines. Yet, there is also a part of me that wants everything that science can throw at me. I want every intervention, every tiny little chance, just in case.
Ideally, the Hawaii MAID law would take into consideration the social and financial lives of its applicants. But laws seldom work that way. They govern by wide swaths. The minutiae: Does this person have social support? Financial issues? Are there ways to help their lives continue more comfortably? Could they use more pain meds? Are they seeking death not because of pain, but because of depression? Those questions are left to the individual, their families, physicians, and the end-of-life care team if they have one.
It is easy to cite social ills, question the motives of insurance companies, and concern yourself with religious morals. These are all valid worries about the context within which medical aid in dying operates. I will forever be wary of the underground Final Exit Network. I support my disability activist colleagues who are firmly against MAID laws, but I also reserve my right to make my own personal decision.
But when someone is dying, unquestionably on their way out the mortal door … should they not have every option? Should a person not be allowed to dictate as much as they can about their end? I am still conflicted. The pain from my cerebrospinal fluid leaks almost broke me, and I was not considered terminal. I believe no one should have to suffer like that. I wish every death could be peaceful and painless. I hope mine will be. There is one thing I have learned, though. When it is my time, I am going to want a death doula.
If you suffer from depression or are affected by any of the topics discussed in this article, these organisations may be able to help.
The views expressed in this article are the author’s own and do not necessarily reflect Al Jazeera’s editorial stance.