Hey Im only 19, but with the crazyness of todays world and the amount of health problems one can come across at any given time, and because j work at a hospital and have seen first hand 14 year oldz and 21 or 24 years old with end stage kidney failure, I have made it clear to my family that if something like that happens or even when im older, if I cant walk on ny own,eat, or heck breathe, they better cut me loose or I will as awful as some might think that sounds. Being independent iz what we strive to be since we were kids, turning 18, 21, moving our, starting a family, to loose that in my opinion is way worse then dying. Idkk thoughts of a 19 yr old here.
Morphine under the tongue is a very compassionate way to ease breathing, and less invasive and painful than a morphine drip.
I have no desire to live in a shell and be a burden. I hope I can have sublingual morphine to ease my breathing when life gets to that point. I also don’t want my body present and no mind!
Splashmom, my condolences. How generous of you to share your experience.
While we should all have the necessary documents, we shouldn’t kid ourselves that they cover everything that could happen. My dad had the language about if he was in a vegetative state for IIRC two weeks, we should pull the plug. But his dying process, a very long and agonizing 4 months, didn’t involve a vegetative state or being hooked up to a machine. The question before us instead was: Should we stop treating for the massive c.diff infection? Unfortunately, that was in no way covered by the advance directive.
I was his agent if he couldn’t make decisions and if my mom didn’t want to, so I could have stopped treatment at what I and his doctors believed was the appropriate time. But it took another month to convince my brothers, who were not here and not seeing what I was seeing. They simply couldn’t believe that it was that bad, that there wasn’t something that could be done. Legally, I could have disregarded their wishes. In the interest of preserving the family, I couldn’t. Once they had seen him, they concurred. It was another 3 weeks after that before the infection finally took Dad. His death itself was peaceful, and Mom and I were with him. We all learned lessons for when Mom’s time comes.
My condolences to @SplashMom and everyone who has been through this and is sharing. It is wrenching to everyone and much tougher than it should be because the default in the US is to do everything possible to preserve “life,” even if it is painful and futile.
@intparent …I agree. Dad was in hospice last year and died 5 days after entering with no food or water. He didn’t have an appetite anyway and a lot of drugs were administered, but it was still very painful for him and us. I had an entirely different pre-conceived notion was hospice was, but it wasn’t this. It scares me now. Nothing dignified about his passing. He was not conscious it seemed for a long time, but once he sort of seemed to come to and said “enough”.
@SplashMom …I am so so so sorry. What a painful thing to go through. Big hugs your way.
I work in healthcare and my philosophy is " Just because science can, doesn’t mean that one should ". I work primarily with geriatrics, so I face these issues regularly . In my experience, it is very hard for families to make those decisions. I have watched family members argue over placing a feeding tube in a 90 year old resident with advanced dementia who is no longer able to feed themselves or be fed by someone else. These are agonizing decisions not to be taken lightly . It is important before their condition reaches this point for the family to meet and discuss the plan of action to be taken. The patient also needs to choose the person in their family who will be most able to carry out their wishes . Many times it falls on the oldest child who may or not be the best choice. Another observation I have made is that many times patients are truly hospice ready , but families aren’t , and as a result the patient and family does not receive the support that is available .
On a personal note, this is not something that is limited only to older people. No one wants to believe that a young, vibrant child or adult will be facing these issues . My sister was a vibrant , sassy 27 year old who started experiencing a severe headache on a Thurs, was found to have blood in her spinal fluid on Fri, transferred to Johns Hopkins on Friday, went comatose on Sat. My grandmother was her POA and had to decide how to proceed. While my grandmother had already experienced the loss of her own daughter , she made the very difficult , but appropriate decision to not choose any heroic measures once she was educated by a wonderful medical staff about the reality of the situation. Was it an easy decision ? No, especially when aunts and uncles voiced their disapproval , but it was one that needed to be made. My sister died peacefully that Wednesday after my grandmother left her side . I urge everyone to have that discussion and get their documents in order. It’s not pleasant , but it is necessary.
carolinamom, wow, wow. So sorry for your loss. It is hard enough with our elders, but such a young sibling makes it so rough.
splashmom, condolences.
silpat, you bring up an important point, that the papers can be filled out and everyone is in agreement about the specified circumstances. However so often, there is ambiguity in the situation, and the place to draw the line is hard to ascertain in the stress of the moment.
I also work in health care, and the mention of the patient being ready but the family not bears repeating. The conversation needs to occur. But it can be so hard. Despite me knowing all this, and working with families at end of life, it is a nightmare in my family of origin. Both siblings have been very angry with me for bringing up the subject regarding our mom, and insisting that the appropriate paperwork be filled out. My mom is fine with it, and relieved to discuss the decisions and fill things out. Rationality in dealing with these matters can be a continuum.
Thanks @greatlakesmom. It’s been 39 years ago that I lost my sister . There have been many medical advances made since then, but probably would not have resulted in a different outcome. It’s important to have those conversations .
It’s hard to have the conversations, especially when your parent and sibs start off with, I want EVERYTHING done, no stinting, and I don’t care what it costs or what it does to anyone else. We have tried to talk and the gerontologist tried as well.
It’s also hard to have this conversation with a parent that just smiles and nods and has really no opinions any longer. I figure my most strident sibs will impose their judgment and the rest of us will endure.
I’m sorry @HImom . I hope it works out for you. I worked with a very good physician who was very direct and specific with what he would do to sustain a life and what some of the outcomes could be , including death or living in a persistent vegetative state for months or years. While it was hard for families to hear, once they heard the specifics many chose to sign a Living Will or DNR. Many Drs have a hard time being that specific or direct, but I truly respect him for it.
Aging is definitely a process and you get to see the strengths and worts in all your loved ones. H and I have tried to have these talk several times and given up; we strongly suspect my older sis and bro will fight to keep my folks “alive” via technology however possible as long as possible, claiming it is what the folks want.
I’m sorry for all folks have had to endure. H’s best buddy has his Wife trapped in her body. She can still think but can’t swallow and can barely talk. She’s in a care home and he visits many times/day. It’s very costly and heartbreaking.
I second the recommendation to read or look at the Conversation Project. One thing that has made the project very effective is that people are shown or told in great detail about what it looks like and feels like to be on life support. Let’s just say it doesn’t look or feel very good.
I’m going to go against the grain here, and I say that I think many (not all, but certainly a lot) of talk of “death with dignity” really means “better dead than disabled.” If an individual has a terminal illness, yes, but many of these conversations–both on this thread and elsewhere–veer quickly into “I’d rather die than not be able to walk” or “I’d rather die than need to have help eating or going to the bathroom.” By that logic, I’ve never been able to walk, among other things, and thus, my life has been useless, lacking in “dignity,” and hideous beyond recognition. from day 1.
@psych_, in the book “Being Mortal,” the author, Atul Gawande, encourages framing the discussion in the following terms: “What makes your life worth living?” If the answer is “eating ice cream” (I’m not being flippant; I’m pretty sure this was one of the things that made Gawande’s father’s life worth living), and if the person will likely still be able to eat ice cream after a particular procedure, than the person and his or her family should say “yes” to the procedure.
@psych I work with individuals every day who can’t walk, dress themselves , feed themselves etc. At no point have I ever or would I ever say that their lives are " useless " or “hideous” If I thought that , I certainly wouldn’t be on the profession that I am. I’m referring to severely , cognitively impaired people who are unable to make a decision for themselves. If someone is able to make their own decisions , the medical POA is not able to make those decisions.
The issue is that these attitudes do exist, and they have a lot of potential for negative impact. There was a study recently published where participants were asked to rate the acceptability of suicide in hypothetical young-to-middle aged adults. There were five pairs of vignettes, and each pair involved one vignette with person with a disability and one vignette where disability wasn’t mentioned. Other factors (age, gender, life situation) were the same, and none of the disabilities mentioned were terminal. In all five pairs, the person with the disability was granted significantly higher suicide acceptability by participants. This was true even when participants themselves had disabilities, had family members with disabilities, etc. We also see higher rates of suicidality among people with disabilities, even when we control for depression and psychiatric illness, and I wouldn’t be surprised if these attitudes contribute to that.
It was fascinating to me how the conversation around Robin Williams’ death changed from “What a tragic loss! We must prevent suicide!” to “Yeah, maybe he made the right decision there” when it came out that he may have had Parkinson’s disease.
I think that as a society, we open the discussion of “death with dignity” as being about terminal illness, unbearable pain in the last few months of life, etc., but we quickly expand that to include things like walking, eating, toileting, etc. To me, those are different things, but I’ve almost never seen a conversation start with the first and not fairly quickly veer into the second. Even here, that happened.
My father died in 2004 after suffering a stroke one month earlier. The day he had the stroke, I was at the ER with him, my mom, and two of my three siblings. My dad was conscious. The ER doctor asked whether we wanted my dad to be resuscitated if he had a heart attack. Lawyer nerd that I am, I piped up, “Shouldn’t you be asking my father?” So the doctor did, and my father said, somewhat to our surprise, that he did want to be resuscitated. Two points: people can and do change their minds (my parents both had POAs and both had the general philosophy of no extraordinary measures); and process matters.
It truly is a personal decision regarding what state one wants to live it. It’s not for us to judge.
psych_ I’m sorry this discussion hit a nerve. It is all about being decisional and talking before that point is in question. Even then, what makes life worth living can change given the time and opportunity.
@SplashMom, I’m truly sorry to read about the loss of your husband. I’ll be thinking of you and your family. Wishing you peace and comfort at this very hard time. Thank you for the help you’ve given all of us here.