Share The Story Behind Your Opinion On Assisted Suicide — Here’s Mine

(Photo illustration by Alex Kingsbury/WBUR)

Yesterday, we took a look at the contributions flowing to both sides of Question 2, the measure on assisted suicide that is on next month’s Massachusetts ballot.

As I noted, I was struck by the hundreds of small individual contributors to support Question 2, also known as Death With Dignity — about 500, by my rough count. Several dozen contributed to the opposition as well.

And here’s what I thought: I bet just about every one of the people on either side of the issue has a story. They’ve witnessed a death, and that experience influenced their opinion. So here’s an open invitation: Won’t you share your story in the Comments section below?

Here’s mine:

As I’ve written here before, my mother was in a terrible accident that left her in a persistent vegetative state, and when all hope was gone, we brought her home to die in accordance with her very clear wishes.

We couldn’t just give her an overdose. But we could “withhold care,” so we stopped her tube feedings to let her effectively starve to death. She lay in a hospital bed at home for nine days, slowly fading. Even knowing her wishes, and with support from the most saintly and sensitive hospice workers, it was a nightmare.

At one point, a hospice doctor told us that if my mother showed any signs of discomfort, her morphine dose could be increased. I remember snapping at him something like: “Why in the world would we wait for her to show ‘signs of discomfort’? Crank the morphine all the way up now! Why let there be even a chance of pain? The point here is for her to die, and if the morphine depresses her breathing and hastens that along, so much the better!”

As a journalist, my aim is to inform, and both sides of the debate over Question 2 make very important points that I gladly help spread more widely. As a person, though, my experience with my mother left such an indelible imprint that when I hear concerns about doctors taking a more active role in ending life rather than healing patients, part of me wants to cheer.

Yes, it is a slippery slope and the best of safeguards are needed, but a medical situation like my mother’s struck me as simply hypocritical: “We are going to end this patient’s life — kill her, in effect — but in such a way that we can call it ‘letting her die,’ even if that might cause more pain to her.”

Question 2 would not be applicable in a situation like hers; a patient must be fully competent to request life-ending medication, and take the pills themselves. But I’ll still vote in favor, as a step toward broader acceptance that in certain very specific situations, medicine can help more by ending life than by extending it.

As a journalist, I wouldn’t normally share my personal voting plans, but it seemed important to be transparent. And I hope you will be, too. How will you vote on Question 2 and what story lies behind your decision?

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  • Cmd

    Carey, I had a very similar experience with my mother, knowing she wanted help dying but having to watch her vegetate for years until a doctor agreed it was time to ‘withhold food and water’ aka let her die, which took 10 days. But I think this current proposal would not have helped us, since she could no longer communicate. It would mainly help terminal cancer, ALS, and other patients woukd can still express their wishes.

  • http://www.facebook.com/anna.ventura.393 Anna Ventura

    I work in Palliative Care, witnessing the trauma too many patients/families endure in medical treatment at all stages of life. Increasing patients & family autonomy, sense of control or the process at end of life which this measure does, decreases that traumatization by its existence alone which is compassionate. Most never actually request it & those who do in Oregon, usually do not opt to proceed with it in the end yet are healed emotionally & spiritually as are family in its availability & process of consideration. The advertisements against the measure are not reality based as MDs are rarely present at time of death as it is now. End of life care will do well to have this option as death with dignity in whatever form death takes place is a caring step for our society in dealing with end of life. It is ok to consider all options as most simply want caring support in the end.

  • Ronald Pies MD

    As a Mass. physician for nearly 30 years, I would like to urge WBUR readers to see the comments of Richard Aghababian, MD, President of the Mass. Medical Society, regarding Question 2:

    http://www.massmed.org/AM/Template.cfm?Section=November_2012_Ballot_Questions&CONTENTID=79221&TEMPLATE=/CM/ContentDisplay.cfm

    I believe that–while there are good arguments on both sides of this difficult issue–Dr. Aghababian makes a compelling case for voting “No” on Question 2. Fundamentally, it comes down to the ethical responsibilities and constraints of the physician, as well as glaring flaws in the present ballot question. That said–having dealt with the death of many loved ones, as well as many patients–I do understand the “other side” of the issue.

    Sincerely,

    Ronald Pies MD

  • Deb

    My father died, at home, with his family, of renal failure secondary to lymphoma. The renal failure was brought on by his second course of chemotherapy — a course he found overall tolerable and which left his lymphoma (very) temporarily in check but which also resulted in three times weekly dialysis for the six months preceding his death. When he began dialysis — in a center staffed by wonderfully humane people who nonetheless couldn’t temper the enormous physical toll the dialysis took on him — he was given a pamphlet that explained that if he chose to stop dialysis he would die, quickly, painlessly and peacefully (see the DaVita web site for the language they use). The knowledge that he COULD choose to stop dialysis as his cancer inexorably stole more and more from the quality of his life was an enormous relief to him — in the way, I imagine, that the unfilled or unused prescriptions of those who choose not to end their own lives in Oregon must be. It gave him control, made each day he lived in some sense an affirmative choice, held his fear of pain and dependency and loss of autonomy at bay. That he would be able to control his own death, if he so chose, I believe, greatly improved the quality of his life and, as such, the time we had with him as he was dying. In the end, it was we, not he, who made the choice: when his cancer overwhelmed him, shutting down his liver, he lost consciousness, with no prospect of improvement. We chose to bring him home, stopping his dialysis and all other medications (except morphine) and let his kidneys fail. He died, as I wrote, with his family around him, in his own bed, with the sun coming through the window, and with, I hope a measure of peace. I support question 2 because I believe that people have the right to die with dignity and because I believe having that right has the potential to make what life is left more worth living.

    • careyg

      This is profound and beautiful, Deb — thank you so much for sharing it…

  • Sally

    My father was paralyzed from the neck down after a motor vehicle accident (a victim of one of those chain reaction accidents on the highway). He had always said he would not want to live like that. I am a nurse and, more than once over the following weeks, he begged me to kill him. I couldn’t legally do so, but I could help him choose a Do Not Resuscitate status so that no CPR would be performed if he had a cardiac arrest and I said yes when his doctor asked about discontinuing anticoagulant medication. I also promised my dad that if he still felt that he wanted to end his life after a year of learning to live as a quadriplegic, I would find a way to help him.

    I hoped I would never have to fulfill that promise. I hoped he would recover some movement or adapt to his new way of life, but I knew him well enough to know that he probably wouldn’t change his mind and that if I didn’t help him he would figure out some other way of ending his life, which, given his condition, would probably be pretty horrific (motor his wheelchair over a cliff or off the end of a pier?). It seemed unfair and I thought it was important to give him the same control an able-bodied person would have to choose to end his life, at a time of his choosing, and in a way that would not endanger or traumatize others.

    My father died a few nights after his anticoagulant medication was stopped, of a pulmonary embolus (a consequence of stopping the anticoagulant medication). I’ll never know if he would have adjusted to living as a quadriplegic and gone on with his life, happy that he had survived. Obviously being paralyzed doesn’t prevent people from having happy, productive lives. In his case it was more of a psychological issue; it was the narcissistic injury he couldn’t tolerate, not the physical one. His suicide would have been tragic but it was his decision, as much as we might have disagreed with it.

    A law like Question 2 wouldn’t have helped my dad. He wasn’t terminally ill. As I write this I wonder if I would support a stronger law. At the time of my father’s death the web wasn’t invented yet so there was no access through the internet to medications and advice about how to use them. Now, if really determined, a person could manage without a doctor’s prescription. Voting down Question 2 isn’t going to prevent tragic suicides; in fact Question 2 won’t really change our options as much as make them less risky to exercise.

    I think if my father could have had the right to medical assistance in ending his life, he might have felt less hopeless and trapped and better able to grieve the losses and try to adapt, knowing he could always stop if he couldn’t bear it. He would have been far less anxious. At the least he could have died at the time and in the place of his choice, with his family around him, not alone in a hospital bed in the middle of the night. But that’s another discussion. For now, all I have to vote for is Question 2 and it’s good enough. It doesn’t say physicians (or advanced practice nurses like me who also prescribe medications, by the way) have to provide the prescription and it doesn’t say people have to use it once they fill it. It just gives everyone freedom of choice. And that’s a good thing.

    • careyg

      Dear Sally — Belatedly, thanks so much for sharing this. It strikes a similar chord: the odd line between “withholding treatment” which is approved of, and hastening death — even though the “withholding treatment” could hasten death much faster than writing a prescription that may or may not be used. One thing is for sure: Sounds like your father had a great daughter…

  • eila

    The risks with MAQ2 outweigh the benefits for patients. Since the oregon data proves that over a third of people drop out of the program after that lethal dose is picked up from the pharmacy, why are folks ignoring the obvious long list of questions and concerns this data gap poses?

    because this is an emotionally-laden issue, and we all want our beloveds, and ourselves, to die comfortably. And we all want a magic fix.

    but MAQ2 does NOT respond to those issues, does not ensure that we’ll be “encircled by family and friends” at the end, doesn’t even make sure that if we choke or panic when drinking the thick last drink, we (and our family members, if they’re present) will get through that OK.

    Once you have a lethal dose “by the bedside” that makes every single moment a life- and death decision. That’s peace of mind?

    MAQ2 doesn’t have a single safeguard to make sure that the patient takes the lethal dose willingly.
    Think about caregiver burnout, think about the fact that “ingesting” can be done through the NG or G tube or through a suppository- think it through.

    MAQ2 only offers immunity for those who assist the patient – it doesn’t protect vulnerable patients from abuse.
    MAQ2 isn’t about whether patients should “have the right” to assisted suicide. This is already available- that’s the unacknowledged reality.MAQ2 is about whether Massachusetts residents should allow physicians and insurers to add this option into their end of life care toolbox.Once it becomes law, anything can happen- as it does in Oregon. Check the data, read the text of the question. Think it through for yourself. This isn’t the magic pill to end existential suffering, or any suffering. This is just a magic bullet to end a necessary dialogue about the only certainty in life.

    • durham kid

      Eila: you wrote in your first paragraph that “Since the oregon data proves that over a third of people drop out of the
      program after that lethal dose is picked up from the pharmacy,”

      One can easily see this as a success of the Oregon law: by providing people with the option of PA suicide, 1/3 of the people decided that they did not want to go through the process.

      it would be very interesting to know if those 1/3 of the people got more help with their pain management or what changed their minds about following through but apparently, faced with the option of actually going through with their suicide, they chose not to.

      You also write in the end of your post “This isn’t the magic pill to end existential suffering, or any
      suffering. This is just a magic bullet to end a necessary dialogue
      about the only certainty in life.”

      I completely disagree with your last statement: PA suicide, practiced by caring sensitive caergivers, will do exactly the opposite – it WILL promote necessary dialogue between individuals considering suicide and their caregivers – and likely will result in a good number of people deciding NOT to take their own lives. Perhaps that is wny 1/3 of the Oregon folks did NOT follow through with their final medication.

      I do not pretend to understand other people’s suffering but I do respect that, if of a competent mind, they should be able to make their own decisions about this ultimate choice.

      • ColorMaven

        As a resident of Oregon, I will tell you that there are many scenarios that play out with the 1/3 who choose not to use the medication. For some, having the prescription is a means of having *control* if pain or suffering gets intractable – this is hugely comforting for many. That control is often enough for many and they do not exercise the option to take the medication. A great many people are very fearful that the end will be horrific and this allows them the peace of mind that they have an option should that be the case.

        There are also many who get the prescription but who wait too long to exercise the option. If the patient is incapable of taking the medicine of their own accord, using their own hands and are incapable of swallowing – then the option is no longer available to the patient. I know someone that this happened to and it was heartbreaking but it is the law.

      • babby660

        Yes. Their life; their choice

  • Peggy

    My mother was in her late 80’s when she learned that she had terminal brain cancer. Based on the location of her tumors, her neurologist told her that she would soon start to lose her speech, her ability to play bridge (which she did 2-3 times a week at the Winchester and Arlington Senior Centers), her ability to drive (which she did during daylight hours to the super markets, doctor’s offices, and senior centers) and finally, the strength in her body to easily get in and out of bed daily and get herself around her apartment. Basically, she was going to suffer the loss of her independence and the wonderful quality of life she had for so long. She was told she would likely die in approximately, 8-14 months when the tumors finally shut down her respiratory system.
    At age 89, my mom knew that she did not want to have debilitating surgeries, tests, or cancer treatments. She did not want to suffer these losses and wanted to die soon –gently, easily and with dignity. She told that to her doctor, and to my sister and to me. We all had to tell her that it was illegal in the state of MA for us to assist her in any way to end her life. I told her it was legal in the states of Oregon and Washington but you had to be a resident for one year and we knew that moving there was not a reality for us.
    She continued to suffer and tried to think of ways to forget about her pain. I was clear this was a matter of her personal integrity and self-empowerment; she wanted to have a choice in how she lived through the end of her life. I felt terrible for her and completely helpless. I felt I had really let her down because she had always been a great mother and I had wanted her last days to be peaceful; instead she suffered unnecessarily; she remained brave as the tumors took away her speech. She eventually wasn’t able to verbally communicate with me and she finally died in a hospice home.
    This is why I support the Death with Dignity Act: to give people like my mother the choice to die in a peaceful manner.

    • careyg

      Dear Peggy — I’m so sorry your mom — and you — had to go through this. Thanks so much for sharing it….

  • Liz

    My dear mother passed away this summer at the age of 63 after an arduous battle with a brain tumor.

    The first few years of fighting were rocky, yet she fought hard and did quite well for a while. Then, things changed; and it became clear (after 3 brain surgeries, much radiation, and even experimental chemo) that there was no hope of a cure nor even any improvement. She had lost and was continuing to lose her abilities to live life, to be independent, and even to simply enjoy a visit with her beloved grandson. She required 24-hour care and our wonderful hospice team tried their best, yet could not control her pain. She was no longer living, she was existing and she was suffering. She was not able even to enjoy time with family. The day that my 2-and-a-half-year-old son (who was the light of her life) was no longer even able to bring a smile to her face was particularly heartbreaking.

    Palliative care was just not enough for her situation. And we were suffering right along with her. It was horrible to watch her in pain. Although it felt strange, we were wishing for her death since we knew that it would be the only relief for her. It was out of our deep love for her that we wished for her to pass. And it was what she wanted.

    We would have missed her no matter when she died, and for her to have to go through so much needless suffering made it worse. We wish that she could have had the legal right to decide when she was done with her suffering. We (my brother, my husband, and I) will be voting YES on Question 2 in memory of my mother and in the hope that this will be an option for others in the future.

    Carey, I am very sorry for your terrible loss. Thank you for sharing your story and for encouraging discussion and thought around this important topic.

    Liz

    • careyg

      Thank you so much, Liz, for your sympathy and for sharing this message — these situations are truly nightmares…

  • Amy Hasbrouck

    My mom died in January of 1999 of cancer that had spread to her bones. She had stopped trying to defeat the cancer five months earlier when it became clear no cure was possible. We arranged hospice care for her in her home. This included a morphine shunt for the pain. She got an hourly dose and had a bolus to give an extra boost when she needed it. Every few days she would need the base amount increased. That would make her sleepy for a couple of days, then she’d have a few days being awake and lucid before the pain would force another increase. She was up to 8 mg an hour, she weighed about 75 lbs when she died.

    She appreciated the hospice people allowing her to be in the process of dying, not making her try to get better or be cheerful about it.

    My mom stopped eating about four days before she died, and stopped drinking shortly thereafter. 36 hours before she passed, the hospice nurse called told my dad to call us all because the end was near.

    My mom got to go through the process of dying, of delivering herself from this world to what lay beyond. Harry Belafonte sang her home.

  • Glenn

    The problem with physician-assisted suicide is that it is suicide. That is, a person makes the final assessment to end their own life. Suicide of a healthy person is almost always a terrible decision driven by clinical depression, an inability to see any alternatives, and sometimes social (“they’ll be better off without me”) or economic (“this will save everybody a lot of money and trouble”) factors. Anyone who has survived a suicide or is a survivor of a successful suicide recognizes how tragically wrong-headed these rationalizations are. Is suicide of a terminally ill person really so different? Note that they have to be rational enough and physically capable enough to ask for and take the fatal dose, so we’re not talking about “pulling the plug” on a vegetative patient.
    Depressed? Of course. Unable to see any alternative? They’ve been diagnosed as “terminal.” Driven by the desire to spare others pain and expense (whether the others wish to be “spared” or not)? Almost always.
    So here’s my story. My wife’s mother was diagnosed with an inoperable brain tumor and was given 4 months to live. After her terminal diagnosis, and all attempts to cure were withdrawn, a research physician heard about her case and asked if he could try a new (untested, uncertified) surgery technique, involving something called a laser. No one at the time knew that this kind of tumor surgery was even possible, and it certainly wasn’t approved by anyone; in fact it had to be done secretly. But she had nothing to lose, and being a medical professional, she figured her imminent death might further medical progress. The surgery worked. She lived with full mental and physical abilities for another 20 years, and died of something unrelated to the cancer. If her doctor had offered her a lethal dose, instead of a risky surgery, would she have taken it? Would you?

    • Marsha

      Obviously your mom was not in the final stages of death, although she had been mistakenly declared terminal. People (in Oregon) often get the Rx and don’t take it- it’s wonderfull that your mom recovered but if she hadn’t and was dying and having a tough time she might have made a different choice- something she (and you) might still want to choose in the future. People do not end up taking the medication in your mom’s circumstance, though they might get it at that time in case they need it in the future. It is not suicide when you are dying- that is when people actually take it.

    • durham kid

      Glenn: your story is moving and I am very glad for the outcome.

      Let me point out few things: you mention the pain endured by anyone who survives a suicide – and, as anyone can imagine, that must be very, very traumatic. A lot of that pain, it seems to me, is the result of not having any closure with the person who has taken their own life.

      PA suicide should create a much more open scenario: with the person suffering knowing that they have this option – and the open process that will be involved to allow the suicide to take place – there should be a lot of open discussion about the person’s desire to end their own life.

      Clearly this will either help with closure or, perhaps result in a treatment that will change the person’s mind about taking their own life (e.g., if they are suffering from something treatable, such as depression). By bringing it all out into the open, we are all offered an opportunity to address and deal with the issue and process – and potentially affect the outcome and decision.

      In the situation we are all in now, the person may have to take their own life WITHOUT telling anyone rather than fear bringing up their wishes and having others interfere with allowing them this option. Thus, it seems MORE likely that, under the present situation, a suffering person is more likely to end their life without any discussion and thus without closure for those left behind.

      I feel that a competent person should have the legal authority to end their own life – and to get assistance if they need it. That is the ultimate expression of freedom.

      I don’t say this casually or cavalierly – this is a monumental decision, which is why very strict safeguards must be in place. But I do not pretend to truly understand what others are experiencing so who am I to say whether someone’s pain is something that they should be forced to endure or allowed to terminate if they do not anticipate a solution.

      I am so glad that your situation worked out. I don’t know if your mother was in a lot of pain and would have considered PA suicide if it were an option but let us remember that the vast majority of people in her situation would not have had her option. If they were in great pain, with essentially no hope of recovery, is it right to NOT offer them a way out?

      ps. I do not have any personal experience with this subject but I felt like these issues needed to be added to the discussion.

  • Alice

    I knew someone very well who was a founding member of the Hemlock Society, which believed in the right to take one’s own life in the case of a terminal illness. He knew how to obtain medications to end his life, if need be. Faced with a debilitating illness, with few months left to live, he choose to end his life. But he did it alone, without anyone knowing, because he knew the consequences of sharing his intentions with his loved ones. He was well aware of the law, and he could not put his family or friends at risk since they could be seen by the justice system as “collaborators” in his decision to take his life.

    As a result, his family discovered him in his home, after his death, in his home and were shocked and grief-stricken. They had no forewarning, they had no chance to say goodbye. We all knew that if a law existed, such as now exists in Oregon, this gentleman would have been able to say his goodbyes to family and friends, have a final glass of wine and a bit of his favorite food, hold hands with his loved ones, say goodbye and come to find his rest. What comfort that would have given to both him and all of those who loved him.

    This was a pivotal event in my life, and I have since been committed to work for change in end-of-life choices.

  • Lisa

    I will be voting yes on Question 2. In Feb 2011 my mother was diagnosed with lung cancer that had already spread to her brain and her bones. She was told that she had 3-6 months to live. Three months later she died at home, after deteriorating in hospice for about 6 weeks. She was kept physically comfortable but suffered emotionally, asking her children and doctor on multiple occasions to help her go. One day she woke up and in a disappointed, unhappy and somewhat annoyed voice said “I’m not dead yet?” Fortunately for her she didn’t have to wait long, but knowing her fate she didn’t want to wait at all. She should have had a choice.

  • Marga Dieter

    It is so important to have this choice, to have a physician assisting the patient who does not want to linger and malign. Since the patient has to be in sound mind to sign for this, we do not have to fear for the patient’s well being. thank you for bringing this to the public’s attention, marga dieter

  • JBlatz

    In 2009 my husband was diagnosed with terminal bone cancer./ I loved him more than I could ever express and my first and only
    thought was the fear that he would end his life in pain. His love for me
    was just as strong and his greatest fear was ending his life in pain
    and what it would do to me.

    My mother also died of cancer. When she was diagnosed she was
    terrified of the pain ahead — so afraid that she begged me and my
    brother to kill her if the pain became unbearable. Imagine the horror
    for her and for us.

    In both of these cases a “Death With Dignity” law would have been
    a huge comfort to us all. The peace of mind that knowing it was there
    if needed would have allowed us all to make the most of the short time
    left. Instead we spent those precious few months worrying about the
    possibility of pain.

    For those who believe that ending one’s own life is wrong
    regardless of the circumstances, that is their right. However, it is a
    decision that each of us should have the right to make on our own when
    faced with the assurance that we are terminally ill.

    Many of us have similar stories, and many of us have seen our
    loved ones ravaged by a terminal, incurable illness. All of them are
    determined to live as long as possible, but none of them should be
    forced to suffer through excruciating, debilitating pain.

  • Marsha

    My mom was 95 when she died, ultimately from a heart problem but really all her systems had pretty much stopped functioning. It makes me angry when the opposition says physicians make mistakes and can’t tell when a patient is within 6 months of death- maybe sometimes that is true but with a 95 year old who is failing? In our case there was no one offering my mom extra morphine, in fact her most severe pain for the last couple of months was an inability to move her bowels, which morphine would exacerbate. She was failing rather than in pain. The saddest part was that she wanted to die with her children by her side, but because no one knew the timing she ended up dying alone in the nursing home at night. I worry that she was frighteded, she often was at night there. I wish she had had a Death With Dignity law available to her.

  • SolipsismIsMe

    My grandmother was on hospice and was constantly asking if we could just up her morphine or something. It was her obvious wish for us to help her “move on”. If only this was allowable, my grandmother would not have had to suffer for a whole month with end-stage pancreatic cancer (which is excruciating, by the way). I am totally FOR this proposition, if only it was in Texas.