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Sideways, can they remove the feeding tube? "They" say that in a dying person, dying of starvation is not that bad a way to go. I know it might be very hard to do emotionally, and the hospice might fight you.
God bless you.
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Sideways I am so sorry for what your mother and you are going through - it sounds truly terrible. Is there any option for you to get her medications reevaluated so she could be a little more comfortable? HUGS are inadequate but sending them to you anyway.
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Thanks for the hugs, folks. I'm overwhelmed with the outpouring of support here. I didn't mean to make this thread all about me. You're right, Jinx, the feeding tube is in use for medications only, since she can't swallow. Hospice has been great about explaining about the endorphins created by the body after not eating for an extended time, etc. And Whirlpool, hospice has been tweaking the medications constantly. I can't say enough good things about them, really.

Whirlpool, your earlier comment about hospice and the nursing home working together is right on. Even when he nursing home staff works pretty well with hospice, individual nurses obviously struggle with hospice. I understand, they're trained to help people get better, so i'ts just how they think. But their good intentions (asking to start giving nutrition through the tube again, for instance, even when she has aspirated on it twice) run counter to what's best, sometimes. Can you imagine how much that's magnified for non-medical people?

(Sorry if I've missed responding to anyone. I'm still finding my way around the site's interface now that I finally got an account.)
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As a retired RN who worked in long term care & hospice, I was always making my hospice patients comfortable #1 priority! When they were due (and needed) pain meds, they got it! I now have my dad on home hospice & will encourage peace, comfort & dignity in his final hrs. I have mixed feelings, though, on assisted (Helium method/hood over head) that I saw once on a tv show. There are alternatives with a terminal diagnosis from a physician(needed for hospice care) & is covered 100% by Medicare. Europe is way ahead of the USA in death with dignity! The nursing homes follow the orders written by a hospice physician....hospices frequently contract out to nursing homes whose staff (who are often too busy) are responsible for administering medications. Dedicated inpatient hospice units in facilities are needed now in the US if it is to work properly.
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1 additional point I forgot was that I had witnessed colleagues who were indeed afraid to medicate their hospice patients! Usually it would be a younger/new graduate without much experience......families must advocate for their loved ones!
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i think homicide should be permitted on a case by case merit basis.. it would sure weed out the wackos..
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I am all for it.
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My ex-husband suffered from a horrible disease called scleroderma. It went into his internal organs, and even though he had a feeding tube, he was no longer digesting the food. We lived in Oregon at the time, but it was in the days before the death with dignity law. When the feeding tube was withdrawn, Jack asked the doctor how long he had. He was told anywhere from a few days to a few weeks. Jack asked his doctor to be kept unconscious during that time, because he didn't want to be anxious and afraid, so he said his goodbyes to everyone. The doctor wrote an order for morphine. When the nurse came in to administer the morphine, she looked at it twice and said, "My, that's a very.... generous.... order". Jack died that night. I believe that some doctors find ways to be humane.
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Quality of life and not knowing you are alive with Alzheimer's, should be a path for families, with a member having this outcome. If you could decide that you do not want to defecate, urinate and aspirate your food and not know it and had a choice...what would you decide? People in history did this for themselves long ago without having to be controlled by a system/government.
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I most certainly do not agree with assisted suicide, as God is in control, he gave us life and he will take us when he is ready. We are playing God and I would not want to be in that position. The medical science has got us to this point, with their heroic medications, surgery etc. but now because of expense and bother they are pushing this medically assisted suicide.
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I'm sorry for your loss. The behavior of your Mom's oncologist was disgraceful. I'm surprised at your comment about the morphine, though. You say she couldn't have morphine because it would surpress her breathing. In states that do not allow assisted suicide, morphine is legally given for exactly that reason, when patient, family & physicians agree. It surpresses the breathing enough to stop it.
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Vermont has recently joined the list of states that allow suicide for the medically terminal patient.
Let me say two things on this subject. 1) There are NEW and highly effective drugs to relieve pain and discomfort in the terminally ill patient. 2) NO ONE is expected to "be kept alive" artificially or otherwise in this day and age. One can die a natural death without any assistance whatsoever....even without a DNR.
One more item: Water ( hydration) is NOT considered an aggressive or added form of life prolongation.
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PaulaK, thank you immensely for your first hand experince and sharing here! Wonderful and insightful. I support and often refer to as "merciful death" vs asst suicide which has horrible connotations for most people.

I'm watching my mom with dementia with lousy quality of life and wishing for the day she can reunite with my deceased father. I wish her wish could be granted...I have had to deal with a lot of grief in trying to help, managing affairs and general worry. I don't wish this on my children and hope that all states adopt legislation to legalize merciful death for my future.

Netherlands permits and there is a good PBS documentary on a family on this. It was beautiful.

Medical advances are outpacing our aging with quality of life. We need alternatives to die with dignity and to spare our loved ones.
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I am absolutely for it. By the way, every one of the answers above were excellent, very thoughtful & intelligent, but I am in complete agreement with IsntEasy. It's sad that we keep people alive even though they are miserable just so the medical industry can make a profit.
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The question of whether to use the word “suicide” in “assisted suicide” is an important one.

Patient rights advocacy groups like Compassion and Choices try to discourage the use of the word “suicide” in discussions about end-of-life choices because it has negative connotations to so many, and because in framing the discussion, they know it is important to draw the distinction between an otherwise healthy person attempting to end his or her own life due to depression or other mental “unsoundness” and a terminally ill person choosing to end his or her suffering at a point when experts agree death is imminent and inevitable in any event.

This is a critical distinction to make. But I can’t help worrying that moving away from the very clear words “suicide” and “assisted suicide” to phrases like “mercy death” could have an unintended and undesirable effect ... namely, to encourage the incorrect idea that when we talk about “assisted suicide” or “physician-assisted suicide,” we are also lumping into the discussion the notion of such a choice being made FOR the patient or inflicted ON the patient by other people (such as a family member of doctor, or both, working in concert).

Even here in this discussion, which specifically addresses the question of “medically assisted suicide” or “physician-assisted suicide,” many of us have felt compelled to note that we “wouldn’t want to make the decision for a family member,” or that we wouldn’t want to have the decision made for us by someone else.

But that isn't what we’re talking about. Making the decision to put someone else out of his/her misery would NEVER be “medically-assisted suicide” or “physician-assisted suicide.” It would be euthanasia. Euthanasia is not legal anywhere in the United States.

Yes, I, too, have heard stories from people who gratefully remember a merciful doctor who prescribed a “generous” amount of painkiller to a family member in unbearable pain. These are comforting accounts, and they give me faith in the kindness and humanity of some medical professionals ... but they cannot give me the peace of mind I seek for myself and my loved ones, because I have heard just as many stories from people who sat with a loved one who literally screamed and cried and begged to die through final, seemingly endless days of agony in a hospice, home hospice, or hospital environment where the medical caregivers were either philosophically/religiously opposed to doing anything to hasten death or were worried about the potential liability of being proven later to have over-administered pain meds.

For myself, I do not want to have to depend upon the “luck of the draw,” and just hope that when my time comes, I am tended by professionals who are experienced and compassionate enough to help me end my suffering if that’s what I choose for myself. I respect the religious beliefs of others for themselves, and support anyone’s right to choose to leave his or her own death completely in the hands of his or her God. But I categorically reject the idea that anyone should be able to inflict those beliefs onto others, or to use them to limit the choices and rights of others.

Thanks to many posters for their kind words. Parnelli, as for the morphine, no one in the lineup of medical providers for my mother discussed or offered the option you describe – i.e., the use of morphine as an unofficial/informal path to exit (which does not surprise me in the slightest, given the very conservative nature of the area in which she lived) -- and I'm not sure I can agree with the assertion that physicians anywhere are "legally" stopping patients' breathing with the consent of the patient and family members, though of course, physician-assisted suicide does take place in various forms even in states where it is not legally sanctioned. But honestly, I doubt my mother would have embraced the idea even if a willing doctor had offered it as an option, as she had a particular terror of choking/smothering/drowning. I do understand that she would probably not have been aware of these sensations in the case of an overdose of morphine towards the end of her journey ... but she WAS aware of them, and badly frightened by them, when this drug was initially tried as a painkiller earlier in her decline.
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As for dementia patients – no, a patient in late-stage dementia is not “of sound mind” and cannot choose physician-assisted suicide him- or herself. Nor can any one else make that choice FOR that patient.

It is possible, however, in earlier-stage dementia, to create an advance directive that sets out what you would want for yourself in certain circumstances that may arise when you no longer have the legal capacity to make these decisions for yourself.

Most people are familiar with “advance directives” as documents that allow you to specify in advance what sort of treatment (or no treatment) you might want if you were in an accident or had some other traumatic injury or episode that put you into a permanent vegetative state. If you have such a document, or are considering creating one (and I can’t recommend this highly enough!), note that it can be written to ensure that your choices will cover you in the event of your dementia/mental impairment – and that it is important to ensure that it IS so written if you want your choices to cover you in that event.

My husband and I both have advance directives. One of the specifically listed “triggering conditions” for the choices we’ve set out in our advance directives is “Mental Impairment or Dementia” – defined in the directives as follows: “That my consciousness is irrevocably impaired such that I am so severely demented that I am unable to make my own decisions, unable to respond to commands or requests, unable to recognize and meaningfully interact with my family or other loved ones, or unable to convey in any way the attributes that I associate with personhood, such as the ability to experience joy, desire, pleasure and consciousness of myself as a continuing entity. This determination may be made by a neurologist and must be made with certainty that is reasonable (not absolute) in light of present medical knowledge.”

Our wishes as set out in our advance directives (in regards to whether we would want artificial nutrition/hydration, resuscitation, blood transfusions, chemotherapy, radiation therapy, home care, antibiotics in the event of infection, treatment for pre-existing or future medical conditions, etc.) are consequently as “covered” as we can make them in the event of dementia. In this way, we’ve done the best we can to have some control over what happens to us if we get to a point of being unable to make decisions for ourselves.

Unfortunately, of course, we will be unable to specify in advance that we choose physician-assisted suicide, because even in states that offer the option, you can only make this choice legally if you are of sound mind when you reach a six-months-of-death prognosis – unlikely in the case of a dementia patient. But we have at least ensured that if we are unable to speak for ourselves in the moment, we have spoken in advance to control/limit/stop medical treatment (and nutrition) in prescribed circumstances.
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Yes, I'd like to die before I become a burden to myself and everyone around me.
I'd like to have the option to go when it all gets to be too much or too painful.

I've seen too much of death and the pain that often goes with it. It's not easy for family members to watch someone die inch by inch.

I live in a very conservative state and have also considered moving; however, the six months from death option doesn't sound all that great to me. I want to go when I want to go. I also saw the movie the "Suicidal Tourist." If you have the cash, and want to go I guess one could do that.

We did have a realtive who at 80 decided he had enough of this life and went off all of his medication and was dead within about a year.

The Baby Boomers are getting old now and I wonder how we will be able to care for all of them. What really is the point of being in bed with a poopy diaper for five years when things are only going to lead to death anyway?

Beware widows of men courting you often times they are only looking for a "Nurse or a purse." If you are thinking of remarrying, call social security and find out how you will be affected financially. Also, if your husband had a pension find out if it is affected if you remarry. I've heard of older couples who wanted to get married legally, but it would be a bad financial deal for them. Some "live in sin" which I think is hysterical and others who are religious get a "religious marriage" without doing the legal paperwork.
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I think it is about time! We are showing more mercy than fear when we allow each other and ourselves the choice to end a life without quality or comfort.

I think the idea that it would be abused is somewhat of a ludicrous one. It is far easier just to get a gun if you want to off yourself in a bad state of mind...the people who desire it as a choice for medical issues are the only ones who are going to be taking the time and advance planning necessary to make it a possible choice later on. Besides that, with all the safeguards in place, no one who is not terminally ill is going to be able to secure the necessary approval.

It is a wonderful thing to be able to die a peaceful and tranquil death in chosen environment surrounded by loved ones holding your hand! ESPECIALLY after suffering and grieving so long before hand. It makes it possible to 'settle accounts' with others and make sure that the last words uttered to one another are I love you type sentiments. Good for the one crossing over and good for the ones watching them go.

I think my dad perhaps might have chosen to do this but I'm not certain. I doubt my mom would even want to talk about it as a possibility..not because she is fearful but more because that is just her nature. My dad planned his funeral beforehand and instructed me (not my mom) but my mom is content to leave all that kind of thing to those left behind. And either way is fine with me...it is not my choice unless it is regarding my own life and whatever my loved ones choose for themselves in life (or death) is what I will support them in, all the way. If they change their mind, I'm with them on that, too.
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Parnelli: Self-administered morphine via the morphine pump is never too much nor can it stop the breathing process. You can't overdose on the morphine pump.
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dementia CAREGIVING is legal suicide. lol..
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Captn right again!!! but I wont take this thread their....yes it should be the choice of an individual on how n when they go....I know it is legal here in Oregon so I looked into it briefly outta curiosity...saw something to the effect of "It is only legal when they in the very last stages and extreme discomfort" etc....so not sure if I agree with that...it should be your choice when and where...why put yourself and your loved ones thru the pain and suffering while line the pockets of this unjust medical system when you are going to die anyway! it sounds brash but once you have been a CGVR you live this hell you never would wish a month of it on anyone!!!
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Thank you Paula for so much, well written information. I also believe in having a choice. Unfortunately my Hubs will not get this choice as he was diagnosed with Alz 5yrs ago and is already considered incompetent to make this decision. His death likely will be the result of starvation as he forgets how to eat and then how to swallow. I am terrified this will happen to me. I would so like the option to put on paper that once I can no longer take in sustenance for say a period of 10 days someone I chose can end my life for me. Perhaps this will come in the future. I am also a religious person and cant say for sure that the God I believe in is OK with suicide. I want to believe He doesn't want me to die in pain but I am not Him and I right now I believe as I was taught... that nothing happens out side of His will. This was hardest for me to accept when my Hubs was diagnosed. I wanted to know why. But that answer is not always ours to know. The bottom line for me though is this: I support choice for everyone. And hope that if one day Im certain its ok for me, I will have the choice.
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I'm bumping this up. Don't worry - I'm not planning on suicide now.
But if I am ever diagnosed with Alzheimer's or vascular dementia, or some other horrible degenerative disease that would take my humanity while my body is still alive, I will head to Dignitas, the Swiss clinic that offers assisted suicide to people who don't have a prognosis of death within six months.

I'm a caregiver and do not want anyone else to go through this taking care of me. And I don't want to endure my own decline.
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