(Editor’s note: The following is from Lowrey Brown, Client Services Director for Final Exit Network (FEN), and includes a reply from Derek Humphry, as she asked for his comments. – KTB)
Society has come a long way toward understanding and respecting the idea that competent adults facing a terminal illness and less than six months to live should have access to medical aid in dying (MAiD). However, the widespread understanding and respect for MAiD does not often translate into understanding and respect for those who wish to hasten their death on their own, outside the medical establishment.
Society does not prepare individuals or their families for the possibility of a self-chosen death without sanctioned medical support. No one teaches us about this option in health education. Health insurance companies aren’t sending us brochures advising us to consider what quality of life we find acceptable and offering to help us plan to avoid a future we find unacceptable.
Society fails to prepare us to even consider, let alone achieve, our own deaths when we are ready. That some of us are prepared is, in very large part, a tribute to Derek himself, and I raise a glass in his direction. That so many of us are not prepared, however, is not a reflection of willful carelessness. It is a reflection of our society, in which it is no surprise that a bereaved 80-year-old might look up after a lifetime of living and years of caring for an ailing spouse, realize that she is squarely in the cross-hairs of a nursing home, and, for the first time in her life, think, “Help! How do I get out?”
I disagree that all FEN should do for such people is point them to a book and shake our heads that they should have thought about it earlier. There is a lot of medical ground between comfortable health and terminally ill. In my experience, individuals considering ending their lives in the near future are rarely comfortably healthy. Limitations from pain and debility are often part of what prompt people to consider their lives complete.
FEN has never required applicants for guide support to have a terminal illness and we recognize that a constellation of medical conditions—such as painful arthritis, growing deafness, and fading eyesight—can seriously degrade quality of life. We are also conducting research to better understand the psychosocial conditions that matter most to people who consider ending their lives, as we recognize that the human experience goes far beyond the body. We cannot see into the minds of any who request our services, but we talk to them and to their families, we ask them questions, and we listen to what they have to say.
FEN provides education and a compassionate presence under the protection of the First Amendment. Though our volunteers always face the risk of a baseless prosecution, they accept the risk, knowing that FEN stands behind them. Until society acknowledges that many of us are living longer than we want, and until society takes practical and effective steps toward preparing people to consider hastening their deaths and then supporting those who choose that path, I hope FEN will continue to counsel and, for those who meet our criteria, guide, people who, after careful consideration, have decided their lives are complete and society has abandoned at such a critical crossroads in their lives.
Derek’s Reply: Your response is well argued, mostly agreed, but does not convince when it comes down to the actual, face-to-face help. Would FEN send two guides to help a person die who has a completed life? A raft of personal ethics, conscience and legal risks come to mind for the visitors. As I said, life is a personal responsibility. D.H.
I think a number of FEN clients would qualify under a “complete life” criteria if we acknowledge that every person has to define what that means to them. In the case of FEN clients, they do have to meet medical FEN conditions. Society needs to listen and in my opinion should recognize that for some, there are worse things than death.
Thank you, Lowrey Brown, for this respectful repudiation of one of DH’s more limited and limiting opinions. With all due respect to DH for his contributions and accomplishments, his thinking on this point of “third party assistance” perpetuates a problem of redefining and enlarging the concept (and related legal, moral and ethical entitlements) of a “right to die.” I am glad that you and FEN are challenging narrow, too conservative, primarily irrational and less right-based (as in a “right to die”) principles and practices and advocating, instead, for principles and practices that are, at least, more reasonable, inclusive, useful, compassionate, and available. One might think that humanity, a species perhaps two hundred thousand years old, would have learned something about dying, dignity and compassion during that time; I suppose it is instinctual fear of death that limits human perspective and willingness to engage with this subject, but to progress towards greater humaneness, it is essential to challenge our rigid thought patterns and avoidant behavior. Just as we help one another to live, we already help one another to die; extending the help that we provide (which is really what the disagreement in this posting is about) is perhaps the most compassionate and respectful act that we can perform for our fellow human beings. May FEN continue to use its eloquent voice in this argument for and towards accepting a right to die – with dignity, with as little discomfort or pain as possible – for all who might consciously choose to die, when and how we might choose, with acceptance and dignity, free from social judgment and third party interventions and controls when they are unwelcome, with the assistance of third party interventions (including assisted dying; including methods and medicinal substances) when they are preferred and requested.
What a perfect response! I completely agree with you. Rights and freedom to own our body seem paramount.
I don’t think it’s instinctive fear of death that limits us. Other societies have had different views, even encourage taking one’s own life under certain circumstances. I believe our stingy attitude about dying is based mostly in the Abrahamic religions.
Most religions of the world publicly oppose self-deliverance, not just the Abrahamic traditions. And it’s more accurate to say the opposition is from the religious authorities rather than from the religions themselves. For example, in the Hebrew and Christian scriptures, there are only six references to ending one’s own life and in none of them is the person who did it condemned for having done so.
Kevin, Christianity supported self-deliverance from the beginning. Christ chose to die on the Cross for the sins of all humanity. As the Son of God, He did not have to do this. Plus, His death only took 6 hours. Some of us today have to suffer for 6 years or more. The limit of suffering should be no more than SIX HOURS.
Indeed, an argument can be made that Jesus committed suicide. Today we have “suicide by cop” then in Jesus’ day we can say it was “suicide by Roman guard.” And, if God actually “sent” Jesus to die, then some might say that God is guilty of assisted suicide. Food for thought.
To Brian: It is so culturally embedded that very little could be “worse than death.” That assumes, offhand and completely, that death is bad. Have you no knowledge of NDE experiences? Death is so far from “bad” that it cannot even be expressed. Yet we as a culture do everything in our power to prevent people from going there. It continues to astonish me. Read Eben Alexander’s, PMH Atwater’s, and Anita Moorjani’s books to understand what we as a society are trying so valiantly to avoid, even to the point of medically imprisoning people in the name of somehow saving their lives. Belief systems have immense power to narrow the mind.
Yes, this is my main understanding also: death, or what follows it, is so wonderful. I continue to be baffled why death is seen as so completely taboo, so awful as to be forbidden to discuss. It is considered only mental illness to want to experience the next part of life, any yet some of us are eager and interested in seeing what is behind that door.
My suggestion is to reduce the number of words used to discuss this subject. Make sure that only words of meaning are used and not the whole word salad. Humphrey is good at that. My Father told us (ordered) “no more medication, food or water”. Translated “enough is enough”. That was on a Sunday. On Saturday he was dead. That is all you need to know. Yes, it was unexpected.
Thankfully, your late father must have been near death to die so quickly with no medication, food, or water. For others, it can take days, or even up to two weeks. With a supportive hospital, hospice (in home or on site in a facility), assisted-living center, or nursing home, there can be medication, mouth stick moisteners, and ice chips to make it more comfortable for those who choose to die by voluntary stoppage of eating and drinking. Without these supports, it *might* not be as easy.
Our late widowed father was taken off all but maintenance medication when he was in late-stage Alzheimer’s. When his organs began shutting down a couple of months later, his health care power of attorney and alternate (two of his four children) authorized cessation of all medications but would not allow his death by dehydration. He received IV pain medication and IV fluids to insure a peaceful passing.
Caution is urged when using ice chips because the liquid can actually prolong the dying process if given in enough quantity. Moisturizers or lip balm are better options.
After reading Derek Humphry’s piece, Lowrey Brown’s reaction, and the above, well-intentioned comments, it occurred to me that we FEN and other right-to-die advocates move to the consciousness-raising paradigm of celebrating death. We mortal sentient beings are designed for death from the moment of conception. Not being unique to humans, look around you and observe all biological manifestations that become, thrive, and then die. Rather than the morose dread that we regard our impending doom, we death workers should really celebrate and witness the natural progression and regression of all life. Teach those around us to be joyful of a life well lived and a death well accepted.
I agree with the response to “a Completed Life,” which is really another way of expressing that life is no longer meaningful, for whatever reason. And I would argue that choosing MAID is not being responsible for one’s life. It is getting (medicinal) help to die. Similarly, using FEN’s Guide service is getting help to die, only it is psycho/social help. In each case, we are discussing end of life decisions and choices.
One way FEN might be able to assist those not able to use FEN’s services might be to sponsor a national data base gathering selected data from those who observe VSED deaths.
I second this – a very good suggestion!
What I would like to see that wouldn’t be specifically FEN-based would be those who would simply go to where a person wanted to set up their exit equipment and oversee that it was set up correctly, without touching it or being present when the person decided to use it; for people who wanted to be prepared rather than those who wanted to leave in the near future. So it would not be necessary for a person to meet any medical criteria to be approved for this service; no different from having your shotgun checked out by a gun store. People use FEN because they either don’t want to be alone or are afraid they will mess it up and end up worse than they started, even perhaps a prisoner of the medical / psychiatric cartel.
FEN provides the kind of support you are describing. Exit guides will do an instructional visit, and whether or not they return for the exit is up to the client.
It is my impression that FEN will not even do that unless the person has been medically approved for FEN assistance in exiting. Am in incorrect? This would be a service independent of FEN’s requirements to be approved for exit.
FEN’s approval process does include review of records by a medical evaluation committee, partly to make sure there is documentation that supports the applicants’ claim of a physical cause for their suffering. Are you suggesting a service that provides instruction for someone without a physical ailment of any kind?
Yes. I’m of the mind that anyone should have the right to an easy, self-directed exit for reasons not subject to oversight by others. People should be able to seek help just as easily as they would seek help for any other project that they were not sure of doing exactly correctly, such as assembling a kit they bought.
Be careful. You’re dangerously close to being a libertarian. 🙂 🙂 🙂
EEEK!
We should all have the right to self-exit for any reason at all. Plenty of folks suffer terribly aside from physical illness. The plague of mankind is prison, poverty, mental illness, etc. No one should be obligated to suffer.
You have the right to self-exit at any time. Suicide is not illegal in the US.
Absolutely. No one can stop a determined person from ending her or his own life by her/his own hands, as tragic as this is. The issue is aiding and abetting suicide, especially by health care professionals. Most US states have not yet adopted this practice even for the terminally ill, nor have most nations.
Mitch, mental illness can is usually treatable, even if it is not always curable. And poverty as a rationale for suicide? Unfortunately, we do not care for the most vulnerable among us as we ought; be they mentally ill, wrongly imprisoned, physically disabled, living with a form of dementia, impoverished, frail elderly, etc. But that is no rationale for saying that their lives are meaningless and they are better off dead. Better to be part of the solution instead of the problem. Volunteer in your community to help and/or donate money to alleviate human needs. But write them off? Never.