The Right to Die

[BabyGirl1979]

I am just a med tech at an ALF while in nursing school, so I hope it's okay to post on this forum. I am also a CNA with 16 years of experience on LTC, ALF, and medical offices.

We have a resident, let's call him "Joe" at our facility. Joe is a diabetic with an AKA and has colon cancer that had been deemed untreatable. Four months ago his doctor gave him three months to live. Until about six weeks ago, he got around on a mobility scooter, enjoying life with his friends at our facility with minimal assistance. His health has deteriorated now to the point he is bed bound and is seen daily by hospice.

Joe has has been refusing all of his morning meds. He has always known exactly what pills he took and what for. He takes Torsemide in the mornings and without it has become so edematous that he can no longer can move his arms and hands. They almost look "cartoony" if that makes sense. He also demanded that hospice remove his Foley catheter and his output without it is essentially zero. I believe he is purposely doing this to end his suffering. As he is in his right mind, I believe this is his right.

Now enter the family...sigh...his sister is his POA and becomes very angry with us when we let Joe refuse his meds. She said if we were "smart enough" we could get him to take them by hiding them in his food. Um...no... Then his brother came in (visits only every couple of weeks) and was very dismayed at Joe's condition. Began demanding that our caregivers give him information regarding the prognosis, what are we doing to "fix this" etc. Of course the caregivers deferred to me (weekend so our nurse wasn't in house) and the hospice staff. The brother wanted to know if we could "force" the catheter on the resident to "save his life" and what the prognosis was (I was thinking "He's on hospice, what do you think?"). I don't mean to seem heartless toward the family but this had been an ongoing problem of denial. My concern is the resident and his comfort.

Hospice, of course, refused to place a catheter against the resident's wishes. But they DID change the Torsemide from morning to night, knowing the resident takes his nighttime meds. To me this is wrong to do so without informing Joe that his "water pill" that he was refusing is now being snuck in.

My main concern is that once the resident becomes unconscious, his POA will demand we place a foley, feeding tube, the whole shebang, making this man's death a painful hideous drawn out ordeal. My nurse manager is at a loss. She called a family meeting with Joe there, which resulted in the POA letting his brother know he wasn't going to "kill himself" and that he would demand everything be done once Joe is no longer able to make decisions. Joe is too exhausted to argue. Is there anything we can do?

I'm sorry this was so long, it's a complicated situation. And it's breaking my heart.

[elkpark]

Don't know if this is possible - can an outsider be appointed POA??? Like an attorney or State-appointed guardian? I would think that a neutral outsider, un-influenced by emotional or financial ties, could best serve to follow the pt's EOL decisions.

A competent adult can delegate her/his power of attorney to anyone s/he chooses. There is no requirement that it be a relative. But it is the individual's choice. A court-appointed guardian is an entirely different matter; that would be a matter of the individual being declared permanently incompetent to make decisions for her/himself. The state would only step in and take over in cases of abuse/neglect, and the state is not going to consider family members wanting the person provided with all possible care to be neglect or abuse.

[duskyjewel]

The state would only step in and take over in cases of abuse/neglect, and the state is not going to consider family members wanting the person provided with all possible care to be neglect or abuse.

Even when it is.

They should look at financial motives of those family members, too many of whom are dependent on grandma's social security check.

[edmia, BSN, RN]

Joe needs a new Health Care Agent/POA! But, if he is unwilling to ask for new paperwork to be drawn up, then you can't do anything. It does sound like a terrible situation to be in, I completely understand this dynamic.

This is all about denial, of course. Both on Joe's part (for not being honest with his family) and the family's part (for not SEEING what reality is and what Joe is trying to say...). There is a lot of misinformation here as well, and that is mainly the hospice's fault. Hospice providers are very well versed in end of life and should be able to talk to Joe about how he wants that to be for him.

The diuretic is a comfort measure at this point, and they might have explained that to him and that is why he's taking it at night. Although, with no urine output, what's the point??

Best case scenario, Joe is DNR and he dies quickly without giving the family time to intervene and "save his life".

[VivaLasViejas, ASN, RN]

It IS hard being the family member on the other side of the equation.

My husband has stage IV carcinoid tumor of the pancreas, which spread to liver and bone before we ever knew what hit us. Now, we'd had informal talks about what we'd want at the end of life, and we'd both agreed that we wanted to be allowed to die a natural death---no CPR, no intubation. Well, that's all fine and dandy until you're the one faced with EOL decisions, and the first instinct is to hang onto that person with all you've got. We did put him on hospice and prepared for the end, but I knew if he got there I'd have to fight myself to let him go.

As it turned out, he has more time left than we thought possible before we knew that he wasn't dealing with the normal kind of pancreatic CA. The carcinoid variety is much slower-growing, and thanks to modern medicine, he is on oral chemo that's actually shrinking the tumors some, and the doctors are no longer saying how long they think he'll be around because some patients live for 5 years or more.

Obviously we took him off hospice, and a year after diagnosis he is as active and happy as he's ever been. And I can't say for sure how I'll handle it if/when we come to that crossroads again, but I hope I will have the grace to do right by him and abide by his wishes. All I know is that I can't judge family members quite as harshly as I used to for trying to "save" their loved one, even though it seems futile by our standards.

[edmia, BSN, RN]

It IS hard being the family member on the other side of the equation.

My husband has stage IV carcinoid tumor of the pancreas, which spread to liver and bone before we ever knew what hit us. Now, we'd had informal talks about what we'd want at the end of life, and we'd both agreed that we wanted to be allowed to die a natural death---no CPR, no intubation. Well, that's all fine and dandy until you're the one faced with EOL decisions, and the first instinct is to hang onto that person with all you've got. We did put him on hospice and prepared for the end, but I knew if he got there I'd have to fight myself to let him go.

As it turned out, he has more time left than we thought possible before we knew that he wasn't dealing with the normal kind of pancreatic CA. The carcinoid variety is much slower-growing, and thanks to modern medicine, he is on oral chemo that's actually shrinking the tumors some, and the doctors are no longer saying how long they think he'll be around because some patients live for 5 years or more.

Obviously we took him off hospice, and a year after diagnosis he is as active and happy as he's ever been. And I can't say for sure how I'll handle it if/when we come to that crossroads again, but I hope I will have the grace to do right by him and abide by his wishes. All I know is that I can't judge family members quite as harshly as I used to for trying to "save" their loved one, even though it seems futile by our standards.

Oh crapola, Viva. I'm sorry.

It's a very difficult process. Glad you have more time together.

[CapeCodMermaid, RN]

I think it's quite selfish for people not to discuss end of life wishes with their family members. I have two kids....one of each kind. My son would never let anyone unplug me. My daughter will do what I want. Guess who I picked for my health care proxy?!? She won't have to decide what to do when the time comes. I've already decided what I want and what I don't want. The decisions have been made. I've told her more than once that if she doesn't do what I want I will come back and haunt her....she thinks I can do it, so she WILL do what I want.

Viva....so sorry to read about your husband. He's lucky to have you.

[bluegeegoo2, LPN]

Don't know if this is possible - can an outsider be appointed POA??? Like an attorney or State-appointed guardian? I would think that a neutral outsider, un-influenced by emotional or financial ties, could best serve to follow the pt's EOL decisions.

I have taken care of a few resident's who have state appointed guardians. All of them have been Full Codes, to include feed tubes and trachs if necessary. I spoke with the state guardian of a resident who, imo, was very hospice appropriate. He told me that the state would not make the call to DNR someone d/t liability issues and would not admit them to hospice. He also said that the state will only step in on behalf of a needy elderly person when the resident has no family, or the family has been deemed "unfit" to make decisions for that resident in the cases of abuse, neglect, personal illness of the primary caretaker, etc. That is here in Texas, and my personal experience with state appointed POA's.

[CapeCodMermaid, RN]

I have taken care of a few resident's who have state appointed guardians. All of them have been Full Codes, to include feed tubes and trachs if necessary. I spoke with the state guardian of a resident who, imo, was very hospice appropriate. He told me that the state would not make the call to DNR someone d/t liability issues and would not admit them to hospice. He also said that the state will only step in on behalf of a needy elderly person when the resident has no family, or the family has been deemed "unfit" to make decisions for that resident in the cases of abuse, neglect, personal illness of the primary caretaker, etc. That is here in Texas, and my personal experience with state appointed POA's.

That's been my experience of state appointed guardians here in Massachusetts, too. They are afraid to act lest some cousin from Arkansas finally shows up and sues them. I have known them to go back to court at the urging of the staff and MD and discuss with the judge the futility and, indeed, torture, of any further treatment. Make your needs known while you still can and pick your health care proxy wisely.

[BabyGirl1979]

Thanks to everyone who replied to this thread. The situation with Joe has gotten better. Hospice had a long talk with the POA about "giving up" vs "dying with dignity". The family seems more on board now. Joe's health is to the point that it does not seem to be a long until he passes. I am confident that it will be comfortable and peaceful. I am seriously considering pursuing hospice nursing when I finish school. You guys are awesome!

[duskyjewel]

I am so thankful to hear this! I know the nurses and social workers I work with are great at those conversations. Thank God for people who work in hospice and are willing to fight for people's dignity to the very end. We can't always get the families to listen, but when you do get through.....it can be so healing for all involved.