Right to Die

Those of us who listen to public radio are familiar with Diane Rehm, the raspy-voiced hostess of a respected public affairs program. Recently–in the wake of her husband’s terminal illness–Rehm has become a spokesperson for an individual’s right to decide how and when he will die.

Rehm said she decided to write the book because she was frustrated by the way her husband died.

“People need to talk about this issue,” she said. “Doctors need to be taught about this issue. The whole idea of doctors being taught about helping to keep people alive, but not being taught how to listen to those who are ready to die — that seems to me sad and misguided.”

One doctor who has come to agree with Rehm is my cousin, Morton Tavel, a cardiologist whom I often quote on this blog. He recently analyzed the issue thusly:

As a physician, I originally supported the dictum that death should be prevented at all costs. But more recently, I have come to realize that perhaps we should also consider suffering as well as dying.

These thoughts have directed my attention to the so-called “aid in dying” laws that are in force in the U.S. states of Oregon, Washington, Montana, Vermont, and California. They are sometimes referred to as “Physician-Assisted Suicide”. These examples often require that a patient’s death be expected within six months, and they compassionately offer a voluntary, self administered end to suffering at an individual’s own preferred time. Since 2014, aid-in-dying bills have been introduced in Washington, D.C. and several states. Canada is also considering such a bill. Other countries, including Switzerland and Belgium, allow aid in dying for people who are not even terminally ill. All these laws provide freedom for a physician to prescribe a lethal drug to a patient for self administration. At present, such a practice is unlawful in 46 states, including Indiana..

In the example of Oregon, which has had such a law in effect since 1997, subsequent study has uncovered no abuses, and, interestingly, about a third of patients who receive medication to end their lives never actually use it, meaning that many are likely reassured by the simple knowledge that they will be able to end their lives at any time of their choosing.

What people want, often, is knowledge that they can control their own lives and deaths.

Tavel recognizes the potential for abuse, and the need to ensure that people do not terminate their lives because they are depressed, or in pain that could be alleviated with proper medical intervention, but he insists that such issues can be addressed.

Laws addressing such issues should be clearly defined. First, I believe a specific time for life expectancy need not be spelled out, for misery without hope doesn’t necessarily conform to a distinct number of days or months. For instance, someone suffering from a severe progressive neurologic disease such as Lou Gehrig’s disease (ALS) can continue suffering for many months prior to death. On a personal level, I witnessed the suffering and death of a patient/friend of mine from a similar neurologic disorder called progressive supranuclear palsy (PSP), a disease that claimed the life of actor Dudley Moore, which is an uncommon progressive fatal brain disorder that affects movement, control of walking (gait), balance, speech, and many others.Given the choice, and if it were legal, he would have gladly opted to end his life by assisted suicide. Even various terminal cancers can behave for variable durations, but also cause prolonged pain and suffering.

In Oregon, for example,the attending physician and a consulting physician have to confirm the patient’s diagnosis and prognosis and determine whether the patient is capable of making and communicating health care decisions for him/herself. If either physician believes the patient’s judgment is impaired by a psychiatric or psychological disorder (such as depression), the patient must be referred for a psychological examination.

If this and the other safeguards of the Oregon law are satisfied, the prescription may be written.

In most cases, the drug used for this purpose belongs to a group of so-called “barbiturates”, commonly used in lower doses for the induction of normal sleep. In large doses, however, death is painless, peaceful, and will occur within a matter of minutes to hours.

A death in this fashion is usually far better than other, less desirable, alternatives. Thus I might conclude with a simple question: Isn’t it more humane to deal with one’s own species in a manner at least as appropriate as the smooth and painless exit we provide to our beloved animal pets?

What is the justification for over-riding individual autonomy, and insisting that a terminally-ill person suffer?

32 thoughts on “Right to Die

  1. I never forget my classmate’s father’s death by M.S about 20 yrs ago. His father was wheel chair bound and bedridden for YEARS before his body finally shut down. I’ll never forget my classmate who said of his father’s passing, “I’m so glad he’s not suffering anymore. We put down our pets, why can’t we do the same for someone with a terminal illness?”They were Catholics so…

    My first introduction to death, at age four, was when my neighbor’s dad committed suicide by shotgun while we played in the front yard. We were no more than 20 feet away. I still can’t handle loud noises well.

    Let’s face it, none of us are getting out of this life any other way than dying so why are we so afraid of it? Why do we restrict it? Life is not sacred or we would live forever, right? We’re all going to die eventually, why fight it? Get busy living or get busy dying…Peace.

  2. I can’t recommend enough Arul Guwande’s book “Being Mortal” about the inevitability of aging and death (regardless of what Suzanne Somers might claim about avoiding it), and the medical profession’s bent toward sustaining life and safety at all costs. Even if you’re not in an active Death with Dignity state, passive death — such as through Do Not Resuscitate orders and choosing not to undergo debilitating chemo when the chances of success are nonexistent or minuscule — are decisions we and our family members need to make before we’re in the moment so that we can assist physicians.

  3. “What is the justification for over-riding individual autonomy, and insisting that a terminally-ill person suffer?”

    One obvious answer to that question is that they are not the one suffering. Hitler’s Dr. Mengale’s specialized in deliberate abuses (beatings and surgeries without sedation among them); then repeated treatments to keep them alive just to see how long suffering bodies would/could live under such circumstances. “First do no harm” meant nothing to him; physicians must consider the entire spectrum of their patient’s condition, treatment and prognosis to prevent the harm of prolonging needless suffering in obvious terminal situation. I had to watch my mother die under such circumstances due to botched surgery resulting in gangrene which had destroyed most of her internal organs before doctors chose to diagnose and act. She was the third patient in the Largo Medical Center in Florida to die in one week due to gangrene. My questions and those of my family regarding her post-surgery severe pain for a week, hallucinations and the horrific smell coming from her, were all ignored and we were told this was normal. This is a different type of not being allowed her right to die because they would have had to admit their error and they hadn’t bothered reading her medical records prior to or following surgery. When they finally told us she had 24 hours to live, my father asked if her Living Will should have prevented her suffering, the doctor coldly admitted it would have and he offered to immediately shut down all machines keeping her “alive” at that time. A different situation from terminal illness but the suffering was the same for my mother, the other two patients at that time and all family members.

    We treat out family pets with more consideration regarding this issue. I have a Living Will but am aware that family members can override MY decision; hopefully they will not. I am not an organ donor; my body goes to I.U. Medical Research in hopes of finding answers to my disabilities to prevent others from suffering for years to struggle through their days. Miserable as my condition is – I have no interest in obtaining the prescription to end my life. This form of suffering doesn’t qualify for such assistance but at my age I also know my condition can change. Is there a source of information in this backwards state to know if there are “Terry Schaivo” patients being kept alive for years due to family and legal interference? Pence, like Jeb Bush in Florida, would jump on this in a heartbeat if he thought it would help his campaign.

    How much of the current situation rests with family interference and medical practitioners and how much is under political control? The answer to that might provide the answer to Sheila’s question.

  4. I totally agree with this piece; I was forced to stand by and watch as three people I loved deeply suffered with no hope of recovery. They did nothing to deserve such a fate!
    We need this law passed in every state. No one has to use the law; but it should be MY choice to end MY life if I choose.

  5. There is no justification for overriding individual autonomy in this matter. That’s why I am a card-carrying member of Compassion and Choices (https://www.compassionandchoices.org), the national organization that works to “protect and expand end-of-life options.” C&C’s president Barbara Coombs Lee, J.D., co-authored the Oregon law mentioned in Sheila’s post, and has been an advocate in every major piece of legislation on palliative medicine and aid in dying since then. A notable achievement in 2015: Physicians can now be reimbursed by Medicare and Medicaid for consultations with patients about end-of-life choices.

  6. I am all for the right to die efforts and I agree with your cousin the surgeon. I’ve been a nurse for 20 years my education took place at one of the nation’s premier hospitals, Barnes Hospital. I worked on their cardiothoracic surgical step down unit. Being given a research facility they saw the sickest of the sick and we’re one of the few places that did some experimental surgeries. I witnessed medical intervention prolonging a few of their patients misery. I wished that medicine could have ended the misery and a these folks could have had a more dignified death.

    My grandmother was dying, battled rheumatoid arthritis for most of her life. I always remember her curled up on the couch slathered in Ben Gay and at least 4 heating pads on a variety of joints. The pain meds took out her kidneys. I was young but when she was hospitalized and dying since there was nothing they could do and her family was Catholic (she was Episcopalian) they chose not food or water. An extra hit of morphine would have been more humane.

    The answer to your question is complex…you stated medicines view fairly well…like to add that too often death is seen as a failure in medicine.

    Religion also plays a hand in this so easy feel that if you push that extra morphine it is suicide and they are not going to heaven.

    Another reason is the fear of dying. I recall a nurse at Riley having to explain to a MD who wanted to continue to do more on a terminal patient against families wishes that the family because of their faith did not see death as final. They believed they were going to see their child again in heaven.

    I’m all for right to die which may explain why my parents have put me in charge when they get to that point.

  7. Like others on this blog, I have believed for years that we treat our pets with more consideration than we do our fellow human beings. When I first heard of physician assisted death a couple decades ago (Dr. Kevorkian) I recall thinking that it was about time that people have the option to choose to leave this life when their diagnosis involves unimaginable and progressive suffering from a disease that will ultimately kill them.

    I was the financial director of a hospice provider years ago and the saddest thing we as employees witnessed was when doctors or family members demanded that everything be done to extend the lives of the dying who were more than ready to go. They were forced to suffer longer much longer than they should have because others could not accept the fact that death could not be avoided. Family members would selfishly demand that additional useless medical measures be used in an effort to prolong the patients’ lives and many doctors were more than happy to give the family members what they wanted rather than respect the wishes of the patients.

    I do hope that the people in our country will some day stop being so afraid of death. Allowing people to choose a medically assisted death is one of the most compassionate ways that we can offer care for terminally ill patients.

  8. Sorry for some of the typos…using my phone, thus texting with big thumbs not to mention my phone likes to assume what I’m writing and will fill in the wrong words…

  9. I worked for nearly 6 years as a Patient Advocate at the VA. In that time, I dealt with a lot of families who could not face the fact that their loved one’s were well past the point where they might have any real life. We have the ability to keep people alive artificially for a long time.

    Most family members believe that miracles can happen and they expect that one will happen for them. The fact is that we had already intervened in God’s plan by entubating the patient. Without man’s intervention, the patient would have died.

    Many time patients themselves are afraid to die and will insist on trying everything. That is their right. It should also be their right to stop.

  10. I’m trying to guess who might be against reasonable right to die laws.

    One group would be those who believe that maintaining human life is a sacred responsibility and only their God should decide when it ends. Of course as someone already pointed out this belief would also prevent human intervention to keep people alive when God has apparently decided otherwise.

    Medical professionals who worry about their responsibility of predicting with certainty disease progression if allowed to continue.

    Public safety people who worry that any door left open even just a crack will allow in those criminals who might benefit from someone’s death. Or even those who are just overwhelmed with care taking.

    Those who believe in life at all costs who worry about the possibility of having their wishes overridden.

    Clearly this is a major step in human progress that needs to be considered thoroughly and thoughtfully with a very careful eye out for any possible abuse.

    Moving ahead slowly and carefully IMO is both what we are and should be doing.

  11. Even the Catholic church teaches that the patient/family need not use “extraordinary means” to prolong life. This most certainly needs more definition than it currently has, but it IS the reason that everyone who does not want to be kept alive on a machine needs to have an Advance Directive/Living Will in place long before a medical condition requires it. Hospice, of course, provides excellent palliative care so the patient is made as comfortable as possible. My mother–at 96 years of age and recovering from a broken hip–had an advance directive, but, in addition, chose to stop living. She simply lost the will to live, and the end came quickly. On the day of her death two years ago, she was alive and coherent in the AM and fell asleep and never woke up in the afternoon. As her children, we knew she had the right to go however she chose. I very much respect Diane Rehm and her position on this issue, but her husband had the same right, too. At the point of death–in my opinion–decisions are only about the dying person and not the family. Let your family know what your wishes are.

  12. I’ve known at least two people who used Dr. Kevorkin’s services. One, with ALS, who informed her family about her intentions. Another with an incurable disease, whose one son accompanied her to Michigan but didn’t tell the other son or anyone else in the family. The first ended quietly with a respectful funeral. The second, I have no doubt, was the source of persistent family problems and mistrust. It’s not just whether a person decides to end life, but how and under what circumstances. Are you going to blow your brains out with a shotgun in the house where you were married and reared your children? Maybe that’s not such a good idea, and maybe it’s not just about you.

  13. No one wants to see people suffer. As I see it there are two dangers to easing the prohibitions on physician assisted suicide. How does anyone (Doctor, family, bureaucrat, or court) deal with depression? Many people who are depressed choose suicide (Robin Williams, for example). Yet many find ways to manage or handle depression given enough time. If it is easy, how many people who might have lived would die instead. The other concern is the inevitable abuse. I had a neighbor who was living rather comfortably requiring only regular dialysis. Her children convinced her to discontinue dialysis because they needed the money from the sale of her house. I did not know her well but her next door neighbor told me about it at her funeral.

  14. While Robin Williams did commit suicide, the reason for his suicide was not just depression, but Lewy Body Dementia, which can cause, in addition to depression, visual hallucinations, rigid movements and motor problems similar to Parkinson’s, sleep did orders, anxiety, interruptions in the ability to pay attention, and loss of memory. Lewy Bodies are abnormal proteins in the brain, similar to Alzheimer’s, but involving different proteins that cause these different symptoms. Love expectancy after diagnosis is roughly 8 years.

  15. Good points Ken. Clearly lots of suicides come from a combination of depression and guns in the home. They say that in homes w/o guns depressed people stand a better chance of getting through bad days.

    On the other hand homes with guns also allow desperate old people, depressed or not, to choose to die.

    I don’t know though about the risk to others who might be required to get them the necessary armament to end it all.

  16. GAL Johnson,

    I was the care-giver for my longtime companion who suffered from Parkinson’s with Lewy Bodies. Barbara was an author and still was an important feminist activist up until the end. Not everyone commits suicide. But Lewy Bodies Dementia like you said, makes it very difficult to continue without a very close friend who can take over for the loss of the person’s short-term memory. I don’t believe Robin Williams had one. His depression then took over and he probably made the right choice to commit suicide.

    The loss of your short term memory is a very, very frightening thing, especially when you know you’re going to die.

  17. Greetings Ken. You have selected an example where greed over comes compassion. The problem is that the “Pence” christians of Indiana will use that example as an excuse not to pass any legislation to give the other citizens of Indiana a solution to a problem that is none of their business

  18. Irvin, my point was that such a change in the law is subject to such misuse and it would seem to me that any change in the law should attempt to safeguard against such abuses.
    Marv! Unless you know a lot more about Robin Williams’ situation, why do you conclude he made the right decision?

  19. Nancy said, “I do hope that the people in our country will some day stop being so afraid of death.”

    I believe that’s our number one problem among our many. Death doesn’t hurt, I know that for a fact. An important part of my companion was living through me because I had taken over her short term memory. I died with her, not all the way, but enough to know that it doesn’t hurt at all. It’s peaceful. But suffering is another thing.

    We allow the suffering to continue to suffer and prevent the dying from dying in peace. That’s about par for the course.

  20. Ken; every law ever written is subject to – and victimized by – misuse. These misuses are usually loopholes, laws that are written so as to be open to interpretation. The U.S. Constitution and 1st and 2nd Amendments are primary examples of that misuse and abuse in recent years. The recent laws in Indiana interpreted as protecting religious rights by their authors and local lawmakers have made national headlines…that is misuse!

    A simple addition in the ACA which would have allowed patients to schedule an appointment with their primary physician ONLY to discuss their “end of life” decisions (such as a Living Will) would have been an appointment covered by their health care. Sara Palin misused, abused, misconstrued and totally screwed that up by screeching “DEATH SQUADS; DEMOCRATS WILL LET OLD PEOPLE DIE!” The GOP grabbed that and ran with it; it was removed from health care coverage in the ACA…you can have this discussion as part of and during a physical exam or while undergoing tests to sneak it through and only have a co-pay rather than the full appointment fee. My personal Death Squad included my son, daughter-in-law and myself prior to requesting a Living Will from my attorney. I included my primary physician in my Death Squad during a regularly scheduled appointment when I handed him a copy of my Living Will with my son designated as my Medical Power of Attorney. What should have been a simple decision and declaration became a long, involved, legal and medical action and cost me money…to simply state my right to die.

  21. Yes, JoAnn but without those safeguards (because my neighbor could simple refuse necessary treatment) my neighbor was coerced by her son and daughter to give up. It might have taken longer for her to ask her doctor to assist in her suicide but they were very persuasive.

  22. Ken; the law doesn’t seem to be part of your neighbor’s death. She simply spawned her own private death squad; her doctor would have been notified that she stopped her dialysis. Maybe death was the only way she could escape her own children; not making light of the situation but consider her feelings when her own children asked her to give up life-saving health care so they could sell her home and get money. That is a situation beyond being sad; that is heartbreaking.

  23. Ken does not know for a fact that the neighbor’s children talked their mother into discontinuing dialysis. The neighbor that told him this may have been an overly nosy neighbor that came up with that story on her own. Without actual knowledge of the truth I do not believe Ken’s example of hearsay is valid.

  24. Ken,

    “Marv! Unless you know a lot more about Robin Williams’ situation, why do you conclude he made the right decision?”

    Because I personally witnessed every day for over five years what Lewy Bodies can do to you and especially if the symptoms are combined with the depression Robin Williams was already having to handle. My companion had Lewy Bodies Parkinson’s.

    He stopped his suffering. He knew what was in store for himself. So he stopped his suffering before he was overwhelmed. Don’t forget he was a very intelligent guy.

    GAL Johnson clearly explained the symptoms of Lewy Bodies in a prior post.

  25. Nancy, I made a point of questioning the accuracy of my report. JoAnn’s frustration about “safeguards” in the law being inconvenient were put in place to prevent family coercion

  26. Ken; exactly where and in which statement did I say “safeguards” in the law were inconvenient? In fact I agreed with and expanded on your comment regarding “misuse” of laws. Unless there is now a law upholding a person’s options in a Living Will, family members can still override those decisions…especially if the family member in question is comatose. Their choice to not be kept alive by machines and/or feeding tubes and be allowed to die with dignity when there is no medical hope of recovery can be ignored. As with Terry Schaivo’s parents and brother being given legal control of her brain-dead body over her husband’s rights; and their control upheld by Governor Jeb Bush, we have no right to act on “our right to die” when we are clear of mind and opt for these decisions. At autopsy Ms. Schaivo was found to have less than half of her brain remaining; upholding her doctor’s repeated diagnoses which began 15 years earlier. Your neighbor’s situation obviously did not include a legal decision by anyone involved and apparently the mother followed her children’s wishes, a law might have slowed the outcome but probably would not change it. Again I say; that was a heartbreaking situation.

  27. Pingback: Right to Die

Comments are closed.