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The Right to Die

Posted

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.

akulahawkRN, ADN, RN, EMT-P

Specializes in Emergency Department. Has 6 years experience.

Unfortunately that is sometimes how things are. He has appointed someone to be his POA who isn't willing to follow his wishes, in his own best interest, once he is unable to make decisions for himself. It's sad, but it is something that happens quite a bit.

LadyFree28, BSN, RN

Specializes in Pediatrics, Rehab, Trauma. Has 10 years experience.

I wonder if he could change his POA to himself and make all the decisions; I'm just wondering out loud.

This is a conundrum that the hospice team needs to be involved in; as well as the NM in educating the family of how hospice works, as well as preparing the family for his death; they are the stages of grieving; denial is a HUGE hurdle that the family is experiencing, and there's anger as well; the family needs support and staff must continue to advocate for him; just don't take it personal; they are unprepared as most of the public is about death and dying.

Best wishes.

lifelearningrn, BSN, RN

Specializes in School Nursing. Has 7 years experience.

I think it's sad that the POA is already going against the patient's wishes.. and hospice should definitely be educating the family on hospice and EOL care. I agree with you, the patient should have the right to refuse medication and treatment, and to dictate the remainder of his life. :(

duskyjewel

Specializes in hospice.

I'm a hospice CNA and see things like this often, too. It's incredibly heartbreaking. Our culture sucks extremely at dealing with death and dying.

Legally, the POA doesn't have any legal authority unless/until the client is unable to make her/his own decisions. What I've seen happen in situations like this is a psych consult for a capacity eval (I work in psychiatric consultation/liaison, and this is one of the things we do), to offer an official opinion about whether he is capable of making informed decisions for himself.

However, the reality is that most facilities will defer to the family members at the bedside. I've heard hospital attorneys explain that the problem is that no one ever sues for being kept alive, but plenty of family members sue for letting their family member die. As long as a family member is standing at the bedside, POA or not, saying "I want you to do everything for (my family member)," that's often what happens. And, of course, once your client does lapse into a coma, or whatever, it is the POA's right to make decisions about his medical care, even if those decisions directly contradict what everyone knows the client's wishes to be (be v. careful about who you name as your POA!!!)

Do you (or does the hospice organization) have a social worker who can talk with the family? They are often v. good at dealing with these kinds of situations. Best wishes.

RainMom

Specializes in PACU, pre/postoperative, ortho. Has 10 years experience.

Perhaps while Joe is still able to make his own decisions, it could be gently suggested to him that he could change his choice of POA to someone who will follow his wishes when he becomes incapacitated.

kbrn2002, ADN, RN

Specializes in Geriatrics, Dialysis. Has 19 years experience.

It stinks. Sorry but it truly just stinks. Unfortunately unless "joe" is willing and able to revoke that POA there isn't much that can be done. Once he is unable to make his own decisions the decisions of the POA will be followed, even though they may be in direct conflict with what the patient wants.

Some families can be brought around with counseling and education, and that is where Hospice needs to step in. Some families just never are able to accept the inevitable despite all the education and counseling we can give.

CapeCodMermaid, RN

Specializes in Gerontology, Med surg, Home Health. Has 30 years experience.

Is the POA for healthcare or financial? Huge difference. If the patient is still alert and oriented, have him fill out and sign a MOLST (POLST in some states). It specifies what he wants and more importantly, what he doesn't want. If HE changes his mind, the doctor has to fill out a new one. If the POA or HCP want to change it, it is more involved. Do you have an ethics committee? Get them involved. Everyone has the right to decide how they want to spend whatever amount of time they have left.

I have a very old (100++) resident. She says every nights she prays to God to die in her sleep, but she keeps waking up. She isn't suicidal. She's just had enough...and oh, is she miffed when she does wake up!

duskyjewel

Specializes in hospice.

I have a very old (100++) resident. She says every nights she prays to God to die in her sleep, but she keeps waking up. She isn't suicidal. She's just had enough...and oh, is she miffed when she does wake up!

LOL the old folks crack me up sometimes. I've gotta say, working with them has grown on me.

CapeCodMermaid, RN

Specializes in Gerontology, Med surg, Home Health. Has 30 years experience.

Families don't discuss end of life wishes very often. It does no good to wait until Grandma is on her way to the ER to discuss what she would want. Have your social services department host a family night where people can discuss end of life issues. Some people think DNR means do not treat.

We need to support our residents wishes. We need to tell the families that we understand the hardest thing to do can be to do NOTHING and remind them that following the resident's wishes is one way to honor them.

amoLucia

Specializes in LTC.

Perhaps while Joe is still able to make his own decisions, it could be gently suggested to him that he could change his choice of POA to someone who will follow his wishes when he becomes incapacitated.
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.

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

Specializes in hospice.

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. :no:

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

Specializes in Emergency, ICU. Has 10 years experience.

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

Specializes in LTC, assisted living, med-surg, psych. Has 20 years experience.

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

Specializes in Emergency, ICU. Has 10 years experience.

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

Specializes in Gerontology, Med surg, Home Health. Has 30 years experience.

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.