Of life and death

Liz Johnson has returned and we thank her for another guest contribution.

I’ve been thinking a lot about death lately (I’m a really fun person to be around) and what it means to allow somebody to die versus prolonging a person’s life. My grandmother passed away a few years ago from complications of diabetes, hypertension, heart failure, and Alzheimer’s. Her battle with Alzheimer’s (and as a result, her process of dying) lasted several years, with her health taking a marked turn for the worse over the last six months of her life.

Anybody who has watched a loved one battle Alzheimer’s can tell you what an emotional and painful descent it is. What starts as occasional forgetfulness and erratic driving turns into lapses in judgment and a complete loss of tact. What starts with forgetting where the post office is turns into forgetting who a person’s children are; watching my grandmother recognize her son, but not know why he was familiar, was excruciatingly painful, and it happened over and over again. For a while, we could tell that she realized that something wasn’t right, but she often opined that everybody else was going crazy, and that surely she was fine. We had to take away her car keys and she had to be released from her decades-long calling as a temple worker, both of which were devastating to her. Eventually, it turned into her losing all ability to care for herself, occasional bursts of violence (especially when her blood sugar reading was over 500), and the need to be cared for in a facility. Alzheimer’s has a particularly nasty way of masking or altering the person so that sometimes you don’t recognize them, and I often had to think of her as an entirely different person so that her comments or actions weren’t taken personally. And then occasionally she would do something so perfectly characteristic, like quietly dancing in her hospital bed, that I would be smacked with the reality that she was still my fiesty, happy-go-lucky grandmother, but was just being held captive by a brutal, degenerative illness.

In the last six months of her life, she was rushed from her Alzheimer’s care facility to the hospital frequently for a variety of issues – pain, nausea, high blood sugar, mild heart attacks, mild strokes, falls, dehydration… basically, you name it, it put her in the hospital. Over this period, she was taking anywhere from 8-12 medications to treat her for these various diseases. My dad and his siblings, spread out all over the US, were tasked with making huge life-changing decisions for her with very little time. Do they treat her for the heart attack? What about infection? Do they treat the high blood sugar? She had a DNR in place, but that was only if she became unconscious – what about all of these other little things?

End of life care is something that has been hotly debated (Terri Schiavo, anyone?), but I think it’s especially interesting in a Mormon context. We certainly celebrate the afterlife, singing that “families can be together forever,” and “should we die before our journey’s through, happy day, all is well!” I can’t tell you how many times I’ve heard death talked about as a “joyous” occasion, because loved ones can be reunited, we can be freed from our mortal shackles, and we can once again dwell with God. Yet we often view death as something to be avoided (or postponed) at all costs, and we do everything within our power to prolong our own lives or those of our loved ones.

Handbook 2 says the following about prolonging life:

Prolonging Life

When severe illness strikes, members should exercise faith in the Lord and seek competent medical assistance. However, when dying becomes inevitable, it should be seen as a blessing and a purposeful part of eternal existence. Members should not feel obligated to extend mortal life by means that are unreasonable. These judgments are best made by family members after receiving wise and competent medical advice and seeking divine guidance through fasting and prayer.

(Side note – how does dying become inevitable? Is there ever a time when dying isn’t inevitable?)

Relatedly, the Handbook says the following about euthanasia:

Euthanasia

Euthanasia is defined as deliberately putting to death a person who is suffering from an incurable condition or disease. A person who participates in euthanasia, including assisting someone to commit suicide, violates the commandments of God.

Obviously there’s a difference between unreasonably extending mortal life and deliberately putting a person to death, but where’s the line? What’s the difference between hastening death (by removing medications, for example) and putting a person to death? In some religions/cultures, not pursuing every possible treatment option is akin to putting a person to death – do you think that holds true in Mormonism?

With my grandmother, it was never a question of just “pulling the plug” or “do not resuscitate.” There were never any grand interventions done to save or prolong her life – they simply treated her diabetes, her heart failure, her high cholesterol, her blood pressure, and any infections she got. Simply failing to treat any of these relatively minor ailments probably would have resulted in her death. Given her terrible quality of life, would this have been the merciful thing to do? Or would it have been grossly negligent?

How does our Mormon view of the afterlife color these decisions? It almost seems to me (at a youthful age of 30) that death is something we should look forward to! We’ll be greeted by our loved ones, we’ll hopefully live in the presence of God, and I cannot help but wonder if there will be a never-ending sushi bar and whether I’ll get to have a pet polar bear (you know, that whole “lamb lying down with the lion” bit). Our bodies will be restored in the resurrection! And I cannot even count how many times I’ve heard that Joseph Smith quote saying that no matter what our level of glory in the afterlife, if we could see it, we would kill ourselves to get there. So what’s the big deal? Why do we fear/postpone/avoid death? And should we?

Comments

  1. Or, a slightly different question. Your discussion involved making the decision for your grandma, but what if your grandma chose to deny treatment? Is it a sin to deny treatment for yourself? Let’s say your grandma maintained her decisional capacity as she suffered through “her diabetes, her heart failure, her high cholesterol, her blood pressure, and any infections she got.” If she declined treatment for any of these, which it is her right to do, is that a sin? What if it was just so painful and the disease so bad that she lost the will to live and didn’t want to be treated. What’s the difference between this and a DNR?

    I agree the line becomes very very thin. In biology, things aren’t quite as black and white as people like Elder McConkie might like to think. Thus, I like the church’s council about “reasonable” and making the decision between you and the Lord. It gives flexibility that nuanced situations like this require.

    Funny you should post this, as right now I am listening to an ethics lecture about impaired capacity, surrogate decision making, and informed consent.

  2. And then there’s the fact that doctors are much more likely to skip end-of-life care, and go home to die instead. Instead of fighting a brutal fight for a chance at a few more months, they go home to die in peace.

    I’ve looked at quite a few medical records of people who have died. It amazes me how much effort goes into saving people, even when it’s clear that their entire body is shutting down due to multiple serious health conditions and old age, and even if the current effort works, they probably only have a couple of days or weeks left anyway. We value life so much that we fight for it no matter the consequences–but in the end we die anyway, miserable and exhausted from multiple surgeries and living in a hospital. Better to die at home and at peace.

  3. Liz Johnson says:

    @medstudent – That’s a really interesting question. How does denying treatment go against “enduring to the end” (if it does at all)?

    I admit that I was surprised to see the handbook say that you should seek competent medical care until dying becomes “inevitable” (whatever that means). I mean, obviously these questions are up to the individual and are made prayerfully, but I personally don’t know anybody who has just let things take them without putting up a fight first. I think, culturally, we are definitely more likely to pursue more medical options than less, along the lines with what @Tim said. Sometimes we do rather extreme medical procedures that only make our last days painful and miserable, and they only buy us relatively little time. And is this what we should be doing?

  4. One problem, if you decide there is a “right to die”__you just move onto the question of a “duty to die”.

  5. In dealing with the deaths of both my parents, I’ve come to realize that it’s one thing to make decisions, whether in regards to loved ones or to oneself, when we’re not having to confront the very painful realities of possibly imminent death, and a completely other, far more difficult, complicated thing to find oneself face-to-face with death. What may seem like the most logical, most sensible decision suddenly takes on a much wider spectrum of hues than we thought existed. Once I thought I knew how I’d want this life to end … now I’m not so sure.

  6. Thanks for your post. My own personal experience with my father’s “inevitable” death, due to cancer, is that American culture has somehow blinded us to our notion of self-preservation. I thank God that an Irish doctor interning in the state of Washington gave my father the straight talk of certain death versus fending off the inevitable. My father died within in a week of that conversation and my family did not have to witness periodic radiation treatments that would have reduced the dignity of my Father.

  7. Back when I was pursuing a masters degree in bioethics, I spent years researching and thinking about exactly this topic for my thesis. I would try to engage my husband on some of these issues, and while I sympathize with his commitment to pious living, I was frustrated that he (no intellectual slouch himself) seemed content with the answer in the Handbook while I was breaking my brain trying to figure it out for myself.

    Anyway, here are some of my thoughts about the issue:

    1. Life almost always offers us more attractive options than death does, so we’re used to thinking of life as always better than death. “Where there’s life, there’s hope,” we repeat to ourselves. But sometimes a person’s health is such that life ceases to offer hope, and that person begins to see life’s end as the last attractive option. Now, sometimes there is hope to be had, but the person is depressed and so becomes insensible to it. At other times, depression isn’t the problem; the person’s life really doesn’t offer any hope. It’s immensely important for those who are ill to have their emotional needs met to the greatest extent possible–visits from loved ones, relief from boredom, etc.–if we’re to distinguish between when patients who wish to die are depressed and when they aren’t.

    2. Murder is wrong primarily because it robs a person of that which is most precious to her, and secondarily because it robs everyone else of the opportunity to share in that person’s continued life. We are liable to make the mistake of thinking of euthanasia as a kind of murder. But to a person for whom life is no longer precious, because of chronic pain or indignity or lack of consciousness or whatever, prolonged life ceases to be desirable. In that way, she might consider euthanasia to be the best choice because she may wish to die, while her loved ones might at the same time view it as murder because they do not wish for her to die. In such a case, she must weigh her obligations to them against her obligations to herself. I lean toward a morality that says our obligations to comfort each other trump our own desires for comfort until our own situation is no longer tolerable, and at that point we must take care of ourselves if no one else will. In other words, it’s a close call, but I think it’s morally acceptable for someone to choose death in the face of intolerable pain and no hope of recovery, even if it pains the people she loves.

    3. I agree that in certain special circumstances, there’s no important moral difference between causing someone’s death passively and causing the person’s death actively. James Rachels offers a story to illustrate this, about an evil guardian who drowns his ward in the bathtub so that he can inherit the boy’s money and another evil guardian who is about to drown his ward in the bathtub, but just then sees that the boy is drowning on his own, and could save him but chooses not to. You can read the essay here if you want to: http://www2.sunysuffolk.edu/pecorip/scccweb/etexts/deathanddying_text/Active%20and%20Passive%20Euthanasia.pdf
    Similarly, if I had given my grandmother, may she rest in peace, a lethal dose of morphine in response to her request for it, I see no moral difference between that and enforcing her DNR order when she would die without resuscitation. Certainly, the emotional content of the two actions are different, but morally, they seem to me to be on equal footing.

    4. Speaking of emotion, I don’t trust my emotions about these matters, and if yours are like mine, you might want to view yours skeptically too. I and many people I know have a bad habit of believing that ultimately, what happens is God’s will, unless humans intervene. I know it’s not true, but it feels true. Just because I didn’t do anything to interrupt the “natural” course of events does not–most emphatically does not–mean that everything turned out the way God wanted, nor does it mean it all turned out for the best. Very often, the right thing for us to do is to intervene in the natural course of events, because how things happen naturally is no indication whatsoever of how things ought to happen, or of what God wants. (See: History)

    5. Finally, I would like to be the author of my own life, and most people I know feel the same. To be the author of one’s own life includes choosing under what circumstances we refuse to continue to live. For anyone’s life to be prolonged against the will of its owner, when the owner is terminally ill but physically too weak to arrange for his or her own death, seems to me to be paternalism which is benevolent but grossly misguided.

  8. charlene says:

    To return to the questions in the OP, I think these decisions are affected more by our view of the quality of this life than our view of the afterlife. I can think of several reasons why we might fear/postpone/avoid death:
    1) as a “just-in-case” what we believe isn’t quite so
    2) a recognition that we are, to some degree, unrepentant sinners and we want to postpone judgment as long as possible
    3) a sadness that death really does mean separation from loved ones and, no matter how brief, it’s still a unbridgeable separation
    4) we are simply fulfilling a biological imperative to preserve life and so have no real choice in the matter.

    Dying is always inevitable but you recognize when it becomes imminent. At that point you have to make these decisions repeatedly every day or even every hour for yourself and/or your loved one. What we “should” do is a matter for prayer and fasting and trust in the answers or decisions we make.

  9. I took a Bioethics course at BYU, and I think that course was a big turning point for me politically. I think I considered myself a conservative prior to that class, but I realized that I disagreed with my conservative classmates on a huge number of issues, including the Schiavo case. Sometimes death is the better option.

    My grandfather was wise enough to have a power of attorney created for healthcare reasons. He was about 90, active, and still quite capable when he suffered a stroke. After the stroke he did not have the mental capacity to even feed himself more than a bite or two. He was, for most intents and purposes, already gone. Removing the feeding tube was an act of mercy. He was able to quickly pass on to a better life, instead of straddling the divide between this life and the next.

    Studying the Schiavo case and related cases, it always surprised me that the people who most want life to go on also tend to be very religious. It seems to me that religious people who believe in an afterlife would want to give those who are suffering or permanently unconscious (and who would die naturally on their own without euthanasia) the chance to pass on to the next life.

  10. These life and death questions where there are vague boundaries and exhortations to “follow the spirit” (which is a good guideline and I’m not being sarcastic) are the exact kind of messiness that comprises life. We each find a different way and work through how we feel about that, and I think that’s the point. When my father died of a massive brain hemorrhage 18 months ago it was, in many ways, a sort of relief for everyone, him included. He had had a major traumatic head injury like clockwork every decade of the six he lived. One stimulated a grapefruit-sized brain tumor, one involved a load of steel pipe falling on his head, once he had a motorcycle accident that shattered his 2nd vertebrae, and once he fell off a forklift onto a concrete slab. He was left after so many head traumas with the effects of Alzheimer’s and he wasn’t happy. I had the privilege of being alone at his bedside as he took his final breath. We had, at the suggestion of the doctor, moved to palliative therapy (painkillers), which meant that he essentially starved to death. The whole family had to come to terms with that. Brain death is hard. But after having lived with him all his life, he probably would have demanded, had his faculties been together, that we hit him with a rubber mallet much sooner. Still, everyone had to come to terms, or the people left here would have been the walking wounded. I am not afraid of death, even less so now that I had that 5-second peek into the greeting part that met dad, but I do recognize that we have to tread lightly when the interested persons left aren’t all on the same page.

  11. anonbecausethisisverysensitive says:

    This is certainly an interesting and loaded topic. One that I gave minimal thought to until my mother’s cancer progressed to the point where she no longer wanted to live. Mercifully for her she passed just less than two weeks after she told me that she no longer wanted to live, but I have no idea how the last two weeks of her life felt to her; the progression of the disease and other problems in her body were so severe that she was left unable to communicate well, and then finally not at all. I’m haunted to this day by the last time I saw her before she died.

    Then when my son was diagnosed with a very rare and serious brain tumor only two and a half years later, the issue became more of an issue. When the aggressive treatment failed and his tumor came back with reinforcements, we chose not to treat the disease recurrence. The hope for that particular cancer was very small, and the treatments pretty well remove any chance at having a good quality of life. We wanted him to be able to live as fully as possible for however long that ended up being. We got all set up with home heath and planned to keep him home with us until he died.

    Unfortunately he reacted unexpectedly badly to his therapeutic chemotherapy regimen and ended up hospitalized to deal with that, which put into motion a chain of events that ultimately led to his death. He never was released from the hospital; we eventually were faced with horrible decisions about what we would and would not do, knowing that he was suffering and that there was no hope of recovery. We chose to stop his tube feeds, then eventually his IV fluids, and finally even turned off his monitor and detached his leads so that everyone wasn’t sitting there focused on the machine to tell us when his life was over. It was horrible and traumatic. The night before he passed he seemed to be in so much pain that we begged the doctors to give him more medication to get on top of it. It became a vicious fight between us and the doctors because they kept insisting that they didn’t want to give him so much that he died. They admitted it was selfish, and I wholeheartedly agreed, reminding them that it wasn’t like he had any chance of living regardless, so it was cruel to deny him help when we had nothing but his moaning to judge his comfort level by. The increased doses of medication didn’t result in his immediate death. Ultimately we don’t know exactly what it was, but it could easily have been tumors pressing on his brain, intracranial pressure, the combination of meds over time – it doesn’t matter. The decisions were awful, and there are many times, often late at night when my daughter and husband are asleep that I replay the events leading up to his death and wonder if we should have fought.

    All that to say that the issue is complicated. We’re not always talking about adults who are capable of verbalizing their experiences. The younger the individual, the greater the aversion to death by the people around them. Or so it has seemed to be in my experience. Never once did it occur to me to consult my church leaders or the handbook to inform my decisions. I can decide my values for myself, and what we decided was not between us and anyone else, it was between us and God. If I made the wrong choice I will have to own that; it was an agonizing decision and I’m not arrogant enough to assume that I did what was objectively right in the situation. I just know what made sense for our suffering child in the face of the information that we had. I love my baby with all my being, and I wanted nothing but what was best for him. Sometimes that isn’t life, as painful as it is to face. I honestly believe that one of the most selfish things that we can do to a loved one is to force them to fight a losing battle simply because we don’t want to handle their death. It’s not a heartless action to know when it is time to allow that person to go peacefully, it is a brave and loving gift that we can give to our suffering loved ones. This doesn’t mean that I was happy about it or that I am not grieving horribly for my son, it just means that it would have been incredibly selfish to prolong his suffering to delay my own.

    As far as euthanasia goes (as opposed to allowing things to naturally take their course and refusing to intervene), I don’t know where I stand. But I’ve certainly given it a lot of thought. I don’t consider what we did to be euthanasia; it wasn’t treated as such by our medical team, but I suppose some could argue that it was. That line certainly is fuzzy.

  12. Well, death may be a passage to a more glorious existence–I sure hope it is, anyway–but it’s still the unknown. I’m not too eager to give up the nice things I enjoy here for the as-yet-theoretical much-better-things elsewhere.

    When my mother was dying, she said the only thing about it that upset her about it was knowing she wouldn’t physically be there to help us anymore. Technically, she did tell me, “I’ll always be there for you,” meaning that she’d be there in spirit, which I understood, but it wasn’t terribly comforting at the time. (It isn’t terribly comforting now, I’m sorry to say, but that’s another story.) I would not deliberately leave my children, knowing how painful and difficult it is to lose one’s mother. (I flatter myself that my children love me as much as I loved my mother.) So yes, it’s my plan to keep living as long as I can, but there’s a limit to how long and hard one can fight. I wouldn’t want to procrastinate the inevitable indefinitely. In a way, waiting for someone to die–watching them suffer and knowing that the dying process can’t be reversed–is worse than suffering the loss of that person, no matter how much you love them. I wouldn’t want to put my family through that either. (Also, I don’t like suffering. I admit it.)

    There may be a fine line between hastening a death (by withholding treatment) and directly causing a death, but it’s still a line and not one I’m willing to cross. But I hesitate to judge a situation I’m not intimately involved in. In real life individual circumstances can mean big differences in terms of what is just or merciful.

  13. This is one case where I agree completely with the CHI wording – in both cases.

    I have nothing else to offer, especially with so many heartfelt and personal contributions before this comment. Thanks, everyone, for sharing them – and thank you, Liz, for a very thought-provoking post.

  14. “I honestly believe that one of the most selfish things that we can do to a loved one is to force them to fight a losing battle simply because we don’t want to handle their death.”

    Yes, yes, yes. If we’re doing it for us instead of them, are motives are off, and we may be making the wrong decision.

    Anonbecause, I’m very sad about your son. I think there’s definitely more reason to fight when the person is young. A friend and fellow member of my EQ passed away a couple of years ago due to a horrible disease, and he was much, much too young. His fight was heroic, and his young wife was brave–but he still ultimately lost the fight. I still think the fight was worth it, despite the low chance of success–after all, 40 or 50 years was as stake, and he had a young family to care for. Ultimately, however, even despite the young age there may come a point where a peaceful death is preferable.

  15. Liz Johnson says:

    Thank you all for your beautiful comments!

    One of the interesting things about death is that we usually think of it as being something that happens to us without any control over it whatsoever. But what I learned from my experience with my grandmother is that we often have a lot more control than we think about when/how we die. It’s not black & white at all, and if we don’t muddle through the grayer areas and explore our feelings about certain things (hastening death vs. prolonging it vs. dying peacefully vs. taking every measure possible), we’ll be caught off guard and have to make huge decisions with no time to really weigh the options.

    @Devorah – I think you bring up a really interesting point. I mean, if you’re hastening (or not avoiding death) by removing a feeding tube, for example, how is watching a person starve to death more humane/ethical than giving them a potentially lethal dose of morphine to accelerate the process? If the goal is for a person to pass on, and it’s given that it will happen (because nobody survives starving – everybody eventually dies from that), is there harm in accelerating the process? It really is an incredibly fine line, and yet when you say the word “euthanasia,” everybody hops up and down like it’s some horrific thing, like you’re going through the hospital clubbing anybody who seems to be in the slightest bit of pain. It’s one of the those hot-button words that isn’t given the nuance it deserves in discussion.

    @anonbecausethisisverysensitive, I’m so sorry about your son. I agree that a whole different light is shed on this discussion when you’re talking about somebody young. I’m so sorry.

  16. My dad had Alzheimers and lived with us until a broken hip made caring for him at home impossible. When he was admitted to the nursing home they asked how we wanted to handle his treatments at the point when it became obvious that the end was near. We opted for no medical intervention. Unfortunately, when he developed pneumonia we found out that no intervention included no antibiotics and so the pneumonia killed him. I am not sure I would have done it differently if I had known ahead about the anitbiotics, but I would certainly encourage everyone to read the fine print and understand exactly what rights you are signing away.

  17. Now we are dealing with my husband’s terminal cancer. He has been blessed with no pain so far but is bedridden and that is the worst thing for him. He has said he is ready to go now but so far his body doesn’t agree. At this point he is still competent enough to decide for himself but doesn’t want to make any end of life decisions. My prayer is that the actual end comes quickly so that I have no decisions to make.

  18. StillConfused says:

    I find it interesting that if an animal is severely injured or suffering, we put it down because to do otherwise would be inhumane. Yet we keep taking more and more actions to prolong a human’s life even when it means suffering.

  19. anonbecausethisisverysensitive says:

    Tim (#14) – We certainly fought the fight hard when he was first diagnosed. He lived 13 months past diagnosis (the average for his cancer is 11 months with treatment). That said, we did not take every measure offered to us because part of the recommended protocol would have seriously damaged his brain and, had he survived, completely impaired his quality of life. To us it is one thing to have a child born with certain mental impairments and learn to work with it. But to take action that would inflict that on him without his involvement in the decision was just something that we could not do. Again, it would only have been because we couldn’t let him go, and that isn’t a good enough reason to ask someone to sacrifice their quality of life, even if he was only a baby. I would never think less of anyone for not fighting – there are so many factors that go into each individual’s decision about how to respond to these types of diagnoses that I would never presume to know what is best for someone else. Fighting does not necessarily mean that you are stronger or of higher moral character. I know of one family who, when their baby was diagnosed with the same cancer as our son, thanked the hospital, refused the treatment and took him home to live out his life peacefully. I can certainly understand why they did that, and I think it took incredible courage and strength to do. It wasn’t the course of action we chose because it wasn’t what felt right to us at the beginning, but I would never think less of them for choosing it.

    To Liz in #15 – it depends on the circumstances under which you are removing the feeding tube (to stick with your example). With our son, since he was basically in a medically-induced coma that assured us that he wouldn’t feel any discomfort associated with not being fed. I don’t know if they lied to us to make it easier on us, but that was what we were told in his situation. As far as the difference between that and giving a lethal dose of Morphine (assuming that you can even figure out what that was, my son was on enough narcotics to kill me almost twice over), I don’t know. In our case we could have kept him alive through the unnatural measures until the tumor actually killed him, or we could withdraw them and allow him to go as close to naturally as possible. If we had not been force-feeding him by tube, he would not have been in a state to eat in any case, so to me it’s not quite the same as actively giving a massive dose of Morphine. In actual fact, many times when we talk about removing certain measures (tube-feeding, IV fluids, etc) what we are really talking about it just not artificially continuing life beyond the point where an illness would cause the person’s life to end. That is different in intent than taking action to end life. Just because we have the technology to extend life in extreme circumstances of illness doesn’t make it ethical to do so.

  20. anonbecausethisisverysensitive says:

    I apologize for some typos there – I should really proof-read before I post my comments.

  21. I’m glad the CHI gives minimal direction on this, putting it in the category of “between you and God” with the number of other things that belong there. I hope the experiences of people being told their decision is sinful are very, very few (I’m sure they exist, cause people can be that callous and stupid).

    A corollary to this (which I hope is also treated well in the CHI) is suicide, especially when it involves disability, chronic, or fatal illness. I think there will be some more explicit instruction on the good/bad side of mortality when we hit the Millennium. There will have to be something to keep those with any minor (or major) impediment from jumping the gun (so to speak) on the end of their mortality when you see all these people with “perfected” bodies around.

    I hope that this post and the wonderful comments will help people get their end of life paperwork in order. If something were to happen, people should have a way to know of your desires when you aren’t able to express them yourself. It is much harder for people to fight over your comatose body if you have a legal document stating your preference. (anyway, enough tangents)

  22. Stupid wordpress. If I wanted a pseudonym, I’d have used one. (atohanie is me, btw)

  23. One comment, on NPR a few years ago, a study was reported. Older, sick people were asked if they could trade health for shorter life, what would they trade. No one would trade any time for health.

    Would you trade shorter life for glory in heaven as a martyr?

  24. #23: RW,
    IMO, The study is wrong. Many people trade a shorter life to/for bad health. Each of my parents did. I do. I have told my wife and kids, if I reach a point that I can no longer live a ‘life’, it’s “Waiter, check please”.

  25. Thank you for sharing your heart wrenching experience. It is so very hard.

    Even with a DNR and all of your paperwork in line…it can be tough. Someone has to act on it. Someone has to authorize it for the hospital.

    For my husband’s dad..that was supposed to be mom. Dad was dying-parkinsons, cancer, an infected heart all complicated by paralysis. They had given him 6 weeks to live so many times…but now the dr said we had days. But when the dr.s asked for permission to pull the tubes…mom was being told by her non-religious children-who were also too far away to see how dad had declined SO far-she was being told that she didn’t love him. She was being told she was making this choice because she was tired of being a caregiver. She was told that Dad didn’t really MEAN his DNR…he was just basing it on his misunderstanding that life continued after death.

    We prayed. there was a blessing. We were told we were putting off making a real decision by relying on a religious crutch. That we were hiding our lack of love behind this false hope. The dr.s gave a deadline…haha. We prayed more. The night before the deadline…dad died.

    The funeral was slightly awkward. We were relieved dad was free from his body. We were celebrating his life…and missing him so very much. Again our hope was taken as a lack of “real” love.

    So now husband’s mom is in a nursing home and some tough choices are ahead.

    I’m SO GLAD the CHI is vague on this.

    We were told with feeding tubes being removed that he would still be given pain medication. It was prolonging his life by keeping him just barely alive for longer. Had he been home, he wouldn’t have been able to eat. But he had blinked-his way of communicating at that point-to tell us he was afraid and wanted to be in the hospital. what do you do? The put the tubes in immediately.

    It’s all bound up with other sibling issues and who wasn’t where when, and who said things to whom, and didn’t udnerstand someone’s teenage whatever. ugh.

  26. There’s a hazard in projecting desires both ways. In one direction we long to put the infirm out of our misery, not his. When my father was living with me and slowly dying, Shaw’s Don Juan was uncomfortably close to the mark: “You may remember that on earth—though of course we never confessed it—the death of anyone we knew, even those we liked best, was always mingled with a certain satisfaction at being finally done with them.” My father unequivocally wanted to continue living as long as he could; being dead had no attraction to him. He suffered in many ways, but in no ways so severe that death was preferred. For me, my wife, and our children, on the other hand, his continually diminishing physical and mental capacity was a burden that just kept growing and would never lighten until he was dead. We didn’t know who would give out first, him or us. We wondered how much longer it would be. Months? Five years? And how much harder would it get? An eighty-three-year-old man with the capacity of a three-year old is a hard thing for those caring for him, but he has no more reason to want to be dead than a three-year-old does.

  27. charlene says:

    anonbecause…I mourn with you because I’ve been there, too. It’s been 25 years and I’ve only recently been able to talk about my son without crying (sometimes).

    lesson#1…you’re right that someone has to act on a DNR. I had to do that against the loving and well-meaning medical staff, to prevent further medical interventions..

    I know now that my son could have lived maybe another 4 years, with no more, and possibly less, quality of life. We also learned with autopsy that he’d already lived 6 years longer than expected. I still have a lot of sadness, but not regrets. We made the best decisions we could at the time, given the information we had. God bless us all as we traverse this life.

  28. Having faith from gospel teachings in the afterlife can be a source of help in tough questions like this, but it also provides the belief that this life is a once in an eternity experience, and the reality is that we don’t know really that much about the afterlife in any certainty. I don’t have a problem with the wording in the CHI…I think it is a very personal decision with complicated factors, and it is so sensitive.

    I like the support system the church provides so there is some guidance, but it is just a hard thing to watch loved ones suffer, and the ward family can provide support when we go through those kind of tough situations and decisions, but there is no cold blanket statement that will apply to everyone.

    When my dad died of cancer, there were those last months when we wondered how much longer it could go on, and there are no answers…you just have to endure through it, love and support, mourn, and let others help support the family.

  29. I work as a nurse in the Pediatric Intensive Care Unit in a major city. So my opinions are obviously skewed. I see the worst of the worst, and the saddest of the sad. I see families who fight and fight until the choice is no longer theirs and the child is removed from life support after being declared “brain dead”. I also see families who are told that the chances of their child making a full or even partial recovery is slim, and they choose to let go before things get worse. I see children defy ALL odds (I saw this with my cousin, too) and recover “fully”. I see families with strong faith and no faith, and I’m not convinced that it changed their ability to say goodbye sooner or later.

    Death is always hard. Just this past week a patient passed away who had spent nearly his entire life in the hospital. Many of the staff were happy at his passing, and many were initially sad, then happy; but all of the staff were happy. This may sound like we have no heart, but I think it is because we watched him struggle his entire life. We knew he had “fought a good fight”.

    Working in healthcare has served to teach me more about the plan of salvation that I ever understood. We “play God” in healthcare. No matter which way we do things, intervening or not, we are “playing God”. I believe that all technology and medical advancements are here because God wants us to progress and move forward in this life. And often the treatments are a major blessing. But what happens when they aren’t? What happens when everything that can be done is still not enough? What happens when we decide that even if the treatments could be enough, we wouldn’t subject our loved one to that process, because so often the treatment is worse than the disease?

    As a nurse, I have told my family that I do not want major life-saving interventions. I do not want to become a burden to them. I do not want to be an adult who is unable to do even the basic functions of life independently. And that is not to say that people who have less abilities are in any way less valuable or have less worth. I just know what a drain it can be on families. However, I have seen so many families that comment on what a blessing it has been to be able to take care of their family member (even for decades) who is unable to care for themselves. I think sometimes the right thing to do is to save a life because the family is not ready to let go. More often than not, in healthcare, we save a life because the family is not ready to let go, not because the individual was not ready. I have watched children try so very hard to die, and yet we continue to intervene. That truly breaks my heart. I watch as their abilities lessen, and we add more and more medications just to keep their body functioning. I watch as their little bodies become tight with lack of use. It is hard to watch. But I cannot deny those families their right to choose life. I cannot tell them how to act, nor would I tell them that their choices are wrong. Each situation is unique. There is no easy time to say a life should end.

    At the end of the day, there is not a right answer. Joy can be found in preserving a life, and in letting a life go. I think that decision is so very difficult to make, but God will help us make it. Medical advice is valuable to a point, but it is all about numbers and chances. Prayer is all about the Spirit and God’s will. And I think Liz is right, there is very little difference between removing a feeding tube, not treating an infection or heart attack, etc. and giving a lethal dose of morphine. All of those options end a life. So when is it assisted suicide and when is it allowing death to take its course? The only differentiation I can make is when we “euthanize” in the controversial sense, we are ending a life before things get really bad. So we are ending it before death would naturally occur. Hospice patients are given morphine all the time to ease their pain, and sometimes one of those doses is enough to allow their body to let go. But I think that is different than euthanasia.

    I helped take care of a child whose parents had removed the feeding tube because his brain had suffered a severe injury. He was only a couple weeks old. It was an incredibly heart-wrenching decision for them to make. But the fact that he died did not make me sad. I firmly believe that children get a one-way ticket to heaven when they pass away. The part that was sad was watching as many in the family judged these parents, and stopped giving them support and love. The parents were met with harsh words and judgments because they had “killed their child”. That broke my heart. It is an incredibly personal decision to let a loved one go. And that decision is not in any handbook of instructions. Its my hope that I don’t let my personal experiences and beliefs cloud my ability to have empathy for others, and to respect their decisions regarding end of life for their families members.

    If nothing else, I have learned as a nurse that love is the only thing that heals. And love is the only thing I can communicate in the darkest hours.

  30. Anonymous says:

    There are places where euthenasia is regulated/legal. Where it is not it is often possible to persuate a sympathetic doctor to give an accidentally lethal dose of medication. So many of the examples above where the decision has been made to allow a person to starve to death or otherwise not be treated, then allow the person to die slowly and in many cases painfully. Why would it not be better at this point to give a lethal injection.

    When euthenasia is regulated/legalised there is a system to follow for this process. For example it can not be initiated by a financial benificiary of the patients will. Often doctors are required to certify that the patient is terminal and will not recover. If the patient is requesting the termination a psycologist is required to certify their ability to choose.

    Regulating euthenasia means there are safeguards to stop abuse of the process of dying with dignity.

  31. Anon for this says:

    End-of-life decisions are heart-wrenching and it really disturbs me that anyone would judge a family or individual for the way they handle it. It is so very personal and so different for each circumstance. I have been through this with both of my parents and my father-in-law in the past ten years. Now my mother-in-law dying. As I visited with her in the care center last week, I saw that she was not using the oxygen which had been prescribed for her. When I asked about it, she said she only used it when breathing just became too uncomfortable to bear. She continued to say that she did not wish to treat any medical condition at her age (90) and in her condition. I love her and fully support her in that. Personally, I have struggled with chronic health problems, including chronic pain, for many years. I work hard at achieving as comfortable and productive a life as possible for myself, but I have made it clear (verbally and legally) to my husband and children that quality of life is more important to me than quantity (or length) of life. I have no intention of treating any additional life-threatening illness or injury that comes my way. My husband, on the other hand, has made it just as clear that he would fight any illness or injury in himself to hang on to life. We realize what a tremendous burden both of our directives put on our children, but we have no choice but to trust them.

  32. Meldrum the Less says:

    What a touching discussion.

    I think we need to hear far more from :
    -People who have actually cared for dying relatives.
    -Medical experts who have insights into the physical body and can predict or even affect somewhat the future likely course for a given condition.
    -Mental health caregivers who understand the social and psychological aspects of dying.
    -Sincere pastoral /religious caregivers who have genuine insight into the soul and compassion.

    I think we need to hear far less from:
    -Political figures looking for electoral windfalls in these issues.
    -Attorneys who think every death is a lottery ticket in the malpractice racket.
    -Religious leaders with moral axes to grind and little connection to very many people.
    -Dreamers in ivory towers detached from reality.

    I notice a distinct and refreshing silence from those representing the latter categories in this discussion.

    One of the most difficult aspects of this modern way of dying is the cost. How much does the family spend on dying?Not everything desirable costs much, but some of it costs a lot. I recently experienced a life saving medical intervention that cost more than my house is worth. Without it I would most likely have had 2012 engraved upon my headstone. I will need something like it again in a few years, probably several times before the end. At what point does society (insurance in my case) spend more on me than I am worth? Or more than I did pay or still can possibly give back? (Some of you might think we already have spent too much on me.)

    I don’t have some rare condition, in fact 50% of you will get this condition and die from some form of it. Do I want to pass some of my piddling life earnings onto my children? Or spend it all on myself and far more; not by taking expensive vacations and driving snazzy cars and eating at elegant restaraunts every night, but by spending worse than a drunken pirate on my own health care? One more year for $100,000? Or is it only $10,000 annually averaged over time? I really don’t know.

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