As I look back at my experience (not a good one, full of love and hope) and my husband's, with Alzheimer's disease, an incurable blood disorder and now a kidney issue, I am thinking about what my own future may be like. I am in the process of rewriting my will, now that I am the sole property owner and the sole inheritor of my parent's estate. I DO NOT look to having someone who loves me dearly providing care for me in my home or elsewhere. I most likely will never have another "significant other", spouse, whatever. I want to write a new advance directive. I want to address something that will most likely be available in the future. Euthenasia. Legally available. I want to word it so that it directs 'whomever' to be given permission to have me "put down" if I'm diagnosed with Alzheimers Disease or some other incurable disease. I don't wish to become the burden and heartbreak that I've experienced with my husband. I know I must have loved him once. I know there was a man there at one time that I was overcome by. I know I had someone I shared a dream with once. I don't know where that went, but I do know what all this has robbed me and our children of. I know the resentment, the anger, the disappointment (name any emotion) it has caused me. Not to mention the despair of all of the financial woes. I'm looking for a head-count, I guess. I want to say in my medical advance directive that I give permission for my P.O.A. to make the desicion to have me euthenized. I have a relationship with my higher power.......I would rather meet Him or Her sooner than later if I have to suffer this disease or another that no one recovers from. So, what do you think. So, I'm known for airing the unmentionable. So? What does anyone think of this? It's a new age. I DO NOT want to be a burden on anyone who remains caring for me (like there would be anyone!) or the government. Please answer with your opins,
Simply put, what you want is not legal. Anyone who did as you request would likely be charged with murder. Even in the states where physician assisted dying is legal the procedure is quite complicated and you must be of sound mind to approve it. Our spouses would not be allowed to do so and neither would you if you were in a similar situation as your husband.
Personally, I think it should be legal. It is what my husband would want - he has said so many times. We belong to an organization called Compassion and Choices that advocates for people to have the right to make choices leading to what they call "death with dignity." You might be interested in looking at their website.
Society's rules are enacted to protect the weakest members. Somebody who is "near death" (whatever the cause) is certainly the weakest. The potential for exploitation and abuse with a euthanasia decision is so high that it is almost impossible to imagine a conclusion (to perform it or not) based on totally ethical standards. Hence it is illegal now and always will be in the future.
Fact: Active euthanasia is murder.
What I see you really asking for is to be in charge of your own destiny. I suspect that YOU want to be the person who will determine when your life is no longer worth living; when any extra quantity of life cannot be offset by the poor quality. Ultimately this is the most personal decision that can ever be made.
None of us knows the exact (pre-destined?) date and time for our own death. You seem to want to be able to choose that exact date & time for yourself. We all know that we possess that very power right now and have possessed it our entire life. . . . .
Yes I am talking about suicide. The personal decision to end your own life. This is a decision that nobody can make for you, it must be your own choice and your own activities that lead to that conclusion.
This message board is not for depressed teenagers. We are all dealing with a terminal diagnosis of one form or another and the reality is that ‘suicide’ is a treatment option.
In places where using medical interventions to end life is legal, it is called assisted SUICIDE, (not euthanasia) for a reason. You MUST make the choice on your own. It is a scary choice that is fraught with moral and religious implications, as it should be.
Talking plainly, your comments about wanting to be euthanized through a POA is actually a wish to ask somebody to commit your suicide for you. It is not appropriate to ask somebody to commit an immoral act (murder) that you are not willing to perform on your own. In reality self euthanasia it happens daily. Anytime a patient ever saved up their medication and (accidentally?) overdosed, they were performing a self euthanasia. If the medication was administered to them then the act was murder.
It should be remembered that one cannot escape the moral, ethical and religious consequences of a suicide (or murder) nor should they. See: posting thread “Complete Tragedy”
Now, with all that said about ACTIVE suicide, perhaps you should consider writing your advance directives, etc. to include (allow?) PASSIVE suicide.
THIS is what POAs and Advance Directives are all about. You don’t ever have to have any tubes inserted, (including feeding tubes!) There are no legal requirements that medications have to be given or any intervention forced upon you that can extend your life for even another minute. You don’t have to call the paramedics unless you want them to do something.
Well written documents AND SOMEBODY YOU TRUST who will carry out your wishes can ensure that your life is not prolonged beyond what YOU want. This is how “euthanasia” is performed in an ethical manner. This is how you take charge of your own destiny.
Yes, but months ago when I was called on to make the decision of whether or not John was to have yet another series of transfusions and some very painful tests, I said no (it was NOT what he would have wanted and his advance directive spelled it out clearly. Boom! The next day, Adult Protective Services were called in and my POA was questioned, a guardian was appointed for him, etc. I'm just saying, that if it were legal to do so in the future and I'm not able to make that decision, I'd wish for someone to make it for me. In my right mind, I'd never take my own life. If I were diagnosed with a terminal cancer or something just as ugly, in my right mind (as now), I'd not give up hope. I'd want to stay and fight. Just want to leave room for the "what if" of the future. Didn't want to offend anyone here. Just, what if.
m-man. You posted one of the most intelligent discussions that I have seen in quite a while. Your mind is sharp, and everything you said was so true. I am caring for an 88 yr old mom, a 87 yr old man, and my 57 yr old dw, and all 3 have asked me to do the assisted suicide routine, but I refuse. It seems very natural for them to think that they want to end their life, but in reality, they lack the courage to do it on their own. It seems ironic that we euthanize animals when we decide they will be better off, yet we maintain human life until it ends naturally, but this is the proper way that God intended Death occurs for everyone, and it is always tragic, sometimes way too early, sometimes way too late, often unexpected, always sad, and we have no control over it. I believe that life ends when God decides that He no longer needs you on earth. Stunt-girl. Do not base your future legal decisions on the feelings you have today. You mention not wanting someone to care for you, or to be a burden to someone, and although that you may want to spare them the heartache and pain, you are also denying them a chance to care for you, to love you, and to sacrifice their life for you. There are many times I wish I was not a caregiver, but the experience has made me a better person, has rewarded me with love, compassion, and strength that I would have never had. The greatest gift is the gift of oneself to another, and you must allow that to happen, regardless of your desire to spare someone the pain and agony. Is is not ironic that the very pain and suffering will actually reward one with the deepest satisfaction of knowing that you gave the ultimate gift??
m-mman, useful comments, thanks. I imagine that all of us who have acted as caregivers at least wonder, at times, whether we'd be able to "see it coming" soon enough that we'd be able choose to take ourselves out of the picture before the understanding of means and motivation are lost.
Still Alice is an incredible book. The highly intellegent woman plans her own demise when her dementia takes over. Of course when that happens she can no longer remember her plans. A book well worth reading. As a nurse I will do all in my power to keep someone comfortable-but I could not actually kill them. It is a personal decision but to me assisted suicide is murder. When I was diagnosed with cancer, many years ago, I did what many cancer patients do. I created my stash of drugs. I felt more in control of my destiny that way.
In the states where physician assisted dying is legal, it is not assisted suicide. The patient has to be within six months of death. He is dying. All the physician does is give him medication that will allow the patient to choose when that death occurs. I think that is compassionate. And most patients who get the medication don't use it.
Stunt Girl and others, In regard to your comments about refusing treatments (through a POA ) and then having APS called in.
A POA is a tool not a weapon. Nobody knows our own situations better than we do. Nobody knows more about what we have been through (or can take) than we do.
You talked about refusing tests and transfusions for John and then having your role as advocate questioned (and revoked?) I would ask you to reflect on how the situation was handled.
Medical people are trained to ‘do everything’ to preserve life. Whenever somebody is ‘dying’ the REFLEXIVE response is to do more not less. This is based on the supposition that ‘trying something’ will always be better than ‘just standing by’.
When John was examined by the medical professionals and they recommended the treatment, did you reflexively say ‘no’ or did you properly discuss the “RISKS AND BENEFITS” of the proposed treatment plan? This is the mechanism that is used to manage medical care. Discussing the risks and benefits IS part of a quality treatment care plan. Unfortunately too many medical professionals reflexively propose treatments without looking at the bigger picture, as they should.
Whenever treatment is proposed - Get the doctor to explain to you; Why are we doing this? How will it benefit me? (or the person you are speaking for) What are the risks involved? What are the alternatives to this treatment?
You may already have decided that ‘you’ don’t want the treatment. That’s fine, but your job then becomes one of convincing the doctor why it is inappropriate for this person at this time. (This is the role of an advocate, the role of a POA holder) After making physicians justify their proposed treatment (and look at the bigger picture) I have never had difficulty getting them to understand why I was making the choices I was and the encounter ended in full agreement.
Example: My 78 y/o mother has a badly twisted back (uses a walker) and a 10 y/o prosthetic knee that was giving her pain. Evaluation by an orthopedic surgeon and the ‘knee’ pain was actually being caused by a degenerated hip. The surgeon reflexively wants to do a hip replacement. I immediately think NO WAY!! This woman can’t lie flat on her back! There is no possibility she is ever going to get out of bed post-op and do rehab and gait training. (an opinion shared by her Physical Therapists) But, the MD insists that a hip replacement is the proper treatment.
As we were in his office and he was attempting to ‘sell us’ on the hip replacement I ask “But what about her twisted back?” His reply “What wrong with your back?” (!) EXCUESE ME! You are the orthopedic surgeon haven’t you considered her total physical condition?? Evidently he had not.
Long story short, after I insisted that he justify the procedure and we went through all the risks & benefits (including death) in the end . . . . no hip surgery . . . and he agreed that continued supportive treatment was the correct plan.
m-mman that was a great set of examples. Thank you for sharing them with us. Stuntgirl I totally agree with the idea of not being a burden to anyone. Through your POA and a letter to go with it, you can make your wishes clear. If you are terminally ill, no tubes of any sort and comfort care only.
Being in the position of saying "comfort care only" for my husband, I can truly understand some of the other comments. It is very unfair that I have to make the life or death decisions for my husband saying treat or not treat. Those should be his choices and he should be able to verbalize them. They are his choices due to conversations we have had over the years and I try to keep my head and heart out of my having to make these decisions for him. There are days that the ideas presented in the film "Logan's Run" seem like good ones to me.
Through all of this, I find myself questioning the "good care" that we give those that are terminally ill. The medical community can save so many people and do so much to prolong a person's life. As a society many of our own beliefs are about living life as long as we can. We take such good care of them that they live longer and don't get the disease that would have taken them sooner. I would not choose to not give him excellent care but there is a piece of me that recognizes that longer life may be a consequence of that choice.
If the above is confusing, that expresses how I feel about the whole thing. I want what is right and best for my husband but when I step back and look at the big picture I find the whole thing daunting.
M-man and others, this thread on suicide should be printed for all caregivers of dementia patients where POA has been thrust upon them and they must deal lovingly with another human beings precious life. I had to make such choices for my other self and I did so with the focus on the best care for him . Now that he is gone I am certain about one thing, I am confident that he knew I did all for love and God knows I fulfilled my responsibility the very best I could.
All of you have given me much to ponder....thank you for such intelligent opposing views.
I would do nothing to prolong my husband's life. His existence at this time can hardly be called a life but I will not actively do anything to end it either. I will love him and advocate for his well being until the day he dies but that day will be left in the hands of the higher power, mother nature, fate or whatever a person chooses to call it. I have already told my children that if I ever get in his condition to find a good nursing facility and place me in it and not try to care for me at home. I wouldn't wish that on anyone.
ehamilton, That is how I feel. We both did Advance Directives years ago so no one in the family would have to make those hard decisions for us. I had a brother who was in a coma for 7 years and I learned then that quality of life is more important than quantity of life.
Bama, amen! These are very personal beliefs, obviously, judgment calls with no hard and fast rights or wrongs. I think it's so very important to let those around you know how you feel, what you want or not want, so they don't have to agonize over these decisions.
The other part of our choices is that we have to pick the right person who can see our choices through and not do what they would want. One of the things I have seen is the result of people picking the wrong person to carry out their wishes.
My mother made my youngest sister her POA because my sister said of course she wouldn't leave my mother alive on tubes. Both of my sisters agreed with that. She also wanted to know that whoever had the POA would take her off life support if there was no hope. Both sisters again said of course. My answer was I didn't know and wouldn't know until I got to that point. Funny thing about life - my sisters are not so sure now and I am more sure I could do it for her.
I talked to my 3 children and gave them copies of the Advance Directive. I told them I would come back and haunt them if they did not carry out what we wanted. The doctors also have copies in their file. I know how hard this decision is to make. My DH had to make it for his brother.
I think the real issue here is that the medical staff does not want to get sued. The quality of life towards the end and the fact that it cost a lot to deliver medical care. If there were only a fixed amount of money available would it be more logical to spend money on someone who will live longer. Giving someone a pacemaker to keep them alive to die of AD is not a choice I would make. I think there needs to be a form that lets the hospital do as you wish, but takes them off the hook for any legal recourse for your decision.
I think you're onto something moorsb. Kind of like the Good Samaritan laws that protect the Samaritan from legal recourse against them if their help inadvertently causes further harm.
In the State of Pennsylvania the person holding the Advanced Directive is required to sign a statement that they know what the wishes of the patient are, have read what the patient checked off and signed, and that they understand they are COMPELLED to do what the patient wanted.
Now, the way to get palliative care only for a patient is to go on hospice at the point when the hospice organization is allowed to take them on.
My husband has a pacemaker. That is how he got dementia in the first place. His heart was stopping. They kept reviving him and then put in a pacemaker to continue to keep reviving him. When the battery starts to die, I will not be replacing it. Might sound strange but EVERY DOCTOR, NURSE, HOSPICE ORGANIZATION EMPLOYEE OR INSURANCE COMPANY EMPLOYEE I have spoken to seems to agree that what I plan is the right way to go considering my husband's current condition. I'm putting them on notice in advance. And when the time comes he will go on hospice.
Hospice won't help you die, but they will make everyone around you allow you to die if that is what you want.
I have had no problem with the doctors who took care of my wife in the hospital for 2 visits. On the first, for a muscle spasm across her back, the ER physician listed various possible conditions, and then asked me on each one whether or not I would want it treated. If my answer was "no" then he did not do the tests for that condition. On the second hospitalization, for pneumonia, the main reason she was in the hospital was that she was basically unresponsive. When I said no antibiotics he agreed and cancelled the order he had written. The main thing that got her better was some fluid since she had gotten dehydrated. Now that she is on hospice there is no problem with allowing her to die.
I once heard a very compassionate new doctor in the ICU. He was explaining to the family of a very old and ill patient that he was not ordering tests because that way he wouldn't have to treat.
That was a great answer bluedaze. If they don't know if something is wrong, then they don't feel under any obligation to treat.
I've been running around with this in my head for a while as my husband has progressed to just a step or two above vegetable. I know that he would not choose to live this way. I find it very difficult to not say "treat" as things happen to him. I have gotten around this by asking the question "is this for his comfort or is it to prolong his life". Rationally I know this is the right choice, emotionally - I am mostly ready to let him go but in spite of that there is a little devil that sits on my shoulder and keeps saying "should you do this". I'm glad he is there as he makes me think things through but the stress of making these choices can be quite exhausting.
All of the above opinions are expressed so well. What intelligent discussions on such a delicate subject. After experiencing what we do everyday, it is so understandable that none of us want to be a burden to our loved ones. But Phranque, when I tire of all the daily stress from being a caregiver,I will always remember what you said so beautifully. "There are many times I wish I was not a caregiver, but the experience has made me a better person, has rewarded me with love, compassion, and strength that I would have never had. The greatest gift is the gift of oneself to another, and you must allow that to happen, regardless of your desire to spare someone the pain and agony. Is is not ironic that the very pain and suffering will actually reward one with the deepest satisfaction of knowing that you gave the ultimate gift??" Thank you.