Refusal of emergency medical care
June 5, 2017 6:35 AM Subscribe
My father is in the late stages of pancreatic cancer. He is not in hospice and is continuing to pursue treatment, but his condition has recently worsened severely, to the point where over the past month there have been several circumstances where he has collapsed at home and has clearly needed medical care. In these situations, my mother has called the paramedics, but when they arrive, he is alert enough to repeatedly refuse treatment and has to be "talked into" going to the ER by the paramedics. What can we do if he will not go?
In each case, it has been clear both at the time and in retrospect that he legitimately required emergency care and that there would have been severe or fatal consequences had he not eventually acquiesced and gone to the hospital. We are very concerned that when this happens again, he will choose to not get emergency care, force the paramedics to leave and will die, or that he will stall long enough that he will permanently worsen his condition.
His refusal of care is in direct opposition to, in calmer moments, his deep commitment to pursuing treatment for his cancer. He does not remember refusing treatment after the emergency situation is treated and he has recovered from the severe issues. The core issue is that when these situations occur, he is alert enough to answer the standard paramedic questions and refuse treatment but is also clearly confused about recent events or basic issues and is not his normal self.
He will not grant my mother power of attorney and does not have a living will, and will state that the reason he does not is because he intends to do everything in his power to get better - except this keeps happening and he keeps refusing treatment and then not remembering what he did. Is there anything that my mother or I can do in a situation of this sort to ensure he gets immediate treatment for a clearly severe medical issue?
In each case, it has been clear both at the time and in retrospect that he legitimately required emergency care and that there would have been severe or fatal consequences had he not eventually acquiesced and gone to the hospital. We are very concerned that when this happens again, he will choose to not get emergency care, force the paramedics to leave and will die, or that he will stall long enough that he will permanently worsen his condition.
His refusal of care is in direct opposition to, in calmer moments, his deep commitment to pursuing treatment for his cancer. He does not remember refusing treatment after the emergency situation is treated and he has recovered from the severe issues. The core issue is that when these situations occur, he is alert enough to answer the standard paramedic questions and refuse treatment but is also clearly confused about recent events or basic issues and is not his normal self.
He will not grant my mother power of attorney and does not have a living will, and will state that the reason he does not is because he intends to do everything in his power to get better - except this keeps happening and he keeps refusing treatment and then not remembering what he did. Is there anything that my mother or I can do in a situation of this sort to ensure he gets immediate treatment for a clearly severe medical issue?
If your father is not willing to set up power of attorney or a living will (which states specific medical treatments he would want or not want), you should talk to him about setting up a health care proxy, a more flexible document/arrangement. Appointing your mother as his health care proxy is designed exactly for situations where he can't make medical decisions for himself, like these you've mentioned.
Can you ask a doctor or nurse at the hospital where he receives treatment if they have an ethics service or a center for bioethics? My mother is a clinical bioethicist (so, dealing with patient treatment ethics rather than, say, medical research ethics) and this is exactly the type of situation that she deals with in her work. An impartial but experienced third party can help you mediate the health care proxy conversation with your father.
posted by zingiberene at 7:28 AM on June 5, 2017 [4 favorites]
Can you ask a doctor or nurse at the hospital where he receives treatment if they have an ethics service or a center for bioethics? My mother is a clinical bioethicist (so, dealing with patient treatment ethics rather than, say, medical research ethics) and this is exactly the type of situation that she deals with in her work. An impartial but experienced third party can help you mediate the health care proxy conversation with your father.
posted by zingiberene at 7:28 AM on June 5, 2017 [4 favorites]
What can we do if he will not go?
My mom would often do this after falls, partially out of pride because she didn't want her neighbors to see her being wheeled out on a gurney, and partially out of anxiety related to riding in an ambulance. She would, however, usually agree to let me take her to the ER. Have you tried that? The paramedics always agreed it was better to take a little longer than to not go at all. (Based, obviously, on specific circumstances.)
posted by Room 641-A at 7:40 AM on June 5, 2017
My mom would often do this after falls, partially out of pride because she didn't want her neighbors to see her being wheeled out on a gurney, and partially out of anxiety related to riding in an ambulance. She would, however, usually agree to let me take her to the ER. Have you tried that? The paramedics always agreed it was better to take a little longer than to not go at all. (Based, obviously, on specific circumstances.)
posted by Room 641-A at 7:40 AM on June 5, 2017
You, your mom and your dad need to have a direct conversation about these events and the repercussions of going to the ER vs staying at home.
If your father were to go to the ER, what would you all like to happen? Maybe in the ER he would be given immediate life-saving treatment and then he would be admitted and be able to pursue cancer treatment in the hospital. Maybe he would pass in the ER or on the way. Maybe he would get better in the hospital and then be discharged home. Maybe he would decondition in the hospital to the point where he could no longer return home. Maybe in the ER they would find his blood counts off and he would have to be put on reverse precautions or bleeding precautions and then have to undergo transfusion or another invasive procedure.
If you set up hospice care you could call the RN when these situations arise and your father wouldn't have to leave his home. She would come and help your mother decide what to do.
It doesn't have to be ER or nothing. Just some things to think about. Hang in there, I'm very sorry you are going through this and I think your dad is so lucky to have advocates like you and your mom.
posted by pintapicasso at 9:13 AM on June 5, 2017 [2 favorites]
If your father were to go to the ER, what would you all like to happen? Maybe in the ER he would be given immediate life-saving treatment and then he would be admitted and be able to pursue cancer treatment in the hospital. Maybe he would pass in the ER or on the way. Maybe he would get better in the hospital and then be discharged home. Maybe he would decondition in the hospital to the point where he could no longer return home. Maybe in the ER they would find his blood counts off and he would have to be put on reverse precautions or bleeding precautions and then have to undergo transfusion or another invasive procedure.
If you set up hospice care you could call the RN when these situations arise and your father wouldn't have to leave his home. She would come and help your mother decide what to do.
It doesn't have to be ER or nothing. Just some things to think about. Hang in there, I'm very sorry you are going through this and I think your dad is so lucky to have advocates like you and your mom.
posted by pintapicasso at 9:13 AM on June 5, 2017 [2 favorites]
Has your dad had his liver tested? It's fairly common for late-stage pancreatic cancer patients to have liver failure which leads to mental confusion through buildup of ammonia levels in the blood.
Also, have you had a truly honest talk with your dad about what he wants from his treatment? In your shoes, I would be wondering if his talk about continuing to fight was a brave front put on for my benefit and he was privately wishing for a more peaceful end, which was coming out at the crisis moments. Late-stage pancreatic cancer is (as I'm sure you know) brutal and often swift. I had to have pancreatic surgery myself a decade ago and spent some time on the forums. A lot of people in that state were ready to let go. Under these circumstances, I would want to review with him what he truly wanted.
posted by praemunire at 11:49 AM on June 5, 2017 [4 favorites]
Also, have you had a truly honest talk with your dad about what he wants from his treatment? In your shoes, I would be wondering if his talk about continuing to fight was a brave front put on for my benefit and he was privately wishing for a more peaceful end, which was coming out at the crisis moments. Late-stage pancreatic cancer is (as I'm sure you know) brutal and often swift. I had to have pancreatic surgery myself a decade ago and spent some time on the forums. A lot of people in that state were ready to let go. Under these circumstances, I would want to review with him what he truly wanted.
posted by praemunire at 11:49 AM on June 5, 2017 [4 favorites]
If it's available and he's ready for it (and, important to say that it doesn't have to mean that other treatment options have stopped)
Maybe this varies by country or by region? because in some places/systems it does require that, and you want to be sure before signing any paperwork. When my mother was going through this exact period, everyone was very clear with us that she could have adequate pain control as soon as she got into hospice care, but that once she did, she would lose access to any and all non-palliative care and access to all but one of her various doctors. this functioned as a coercive threat whether or not it was meant to. I think it is normal for ill people in such situations to be inconsistent and incoherent about what they want, partly as a consequence of that.
The other thing is that getting hospice care requires a doctor to say that they estimate you have six months or less (though this also may vary by region -- it was true where I was). it's a much more difficult thing to accept that timeframe than to accept the more general fact that they have a terminal illness, and superstitiously, some people feel like the longer they put off hospice, the longer they will live. (also, realistically, as mentioned above.)
Can you get your dad to talk to you during a lucid period about what he's most scared of? For my mother, the big thing was fear of dying in a hospital instead of at home. This would explain his willingness to go to treatment but not to an ER. for other people, it would be dying at all, and then he would be saying No because if he doesn't need emergency help, he's still ok. This can help you think of effective ways to convince him to go to the ER in crises, but also to be sure that it really is what he wants to do.
I tried to be the strongest possible patient advocate for my mother and felt horrible when other people suggested that she was putting on a brave face and staying in treatment for longer than she would have wanted to, for our benefit. I didn't know if that was true and still don't. all I could really do was constantly reassure her that I would get her whatever she wanted and she didn't have to say yes or no to anything to please anybody. I could never be completely sure if she believed me, so I could only do what she asked, in the end.
posted by queenofbithynia at 1:50 PM on June 5, 2017
Maybe this varies by country or by region? because in some places/systems it does require that, and you want to be sure before signing any paperwork. When my mother was going through this exact period, everyone was very clear with us that she could have adequate pain control as soon as she got into hospice care, but that once she did, she would lose access to any and all non-palliative care and access to all but one of her various doctors. this functioned as a coercive threat whether or not it was meant to. I think it is normal for ill people in such situations to be inconsistent and incoherent about what they want, partly as a consequence of that.
The other thing is that getting hospice care requires a doctor to say that they estimate you have six months or less (though this also may vary by region -- it was true where I was). it's a much more difficult thing to accept that timeframe than to accept the more general fact that they have a terminal illness, and superstitiously, some people feel like the longer they put off hospice, the longer they will live. (also, realistically, as mentioned above.)
Can you get your dad to talk to you during a lucid period about what he's most scared of? For my mother, the big thing was fear of dying in a hospital instead of at home. This would explain his willingness to go to treatment but not to an ER. for other people, it would be dying at all, and then he would be saying No because if he doesn't need emergency help, he's still ok. This can help you think of effective ways to convince him to go to the ER in crises, but also to be sure that it really is what he wants to do.
I tried to be the strongest possible patient advocate for my mother and felt horrible when other people suggested that she was putting on a brave face and staying in treatment for longer than she would have wanted to, for our benefit. I didn't know if that was true and still don't. all I could really do was constantly reassure her that I would get her whatever she wanted and she didn't have to say yes or no to anything to please anybody. I could never be completely sure if she believed me, so I could only do what she asked, in the end.
posted by queenofbithynia at 1:50 PM on June 5, 2017
I wonder if your insurance can cover a consultation with a palliative care physician or nurse practitioner. Many of them work independently from hospices and their jobs are not to sign patients up for hospice but help them come to big decision about their health care that's consistent with their goals. They tend to be very empathetic individuals well trained and are very good having these difficult discussions about issues of mortality and can be a great help to patients and family untangling the psychological and practical aspects of terminal illness. In my experience some insurance tend not to cover out patient office visits, but the providers are more available in the hospitals. Next time your dad gets admitted to hospital you may ask if your family can get a palliative care consult; this is a very reasonable request and almost certainly will be granted if such service is available.
posted by Pantalaimon at 3:40 PM on June 5, 2017 [2 favorites]
posted by Pantalaimon at 3:40 PM on June 5, 2017 [2 favorites]
Mod note: Update from the OP:
After this happened yet again, my mother was able to successfully talk my father into granting her health power of attorney so she could more quickly assist if it happened in the future. He is currently in stable condition. praemunire, thank you for bringing up liver failure, that was most certainly an issue here.posted by LobsterMitten (staff) at 6:03 PM on June 5, 2017 [2 favorites]
I guess I'd just add, consider that your father is speaking his true wishes when he says he doesn't want medical care.
I strongly recommend you try to get a referral to a palliative care specialist. He does not need hospice to get palliative care. The doctors, social workers, nurses, and spiritual counselors who work on palliative care teams are trained to help people and their families identify their wishes about care. They are also focused on increasing comfort.
Choosing not to get care is a valid choice, even if it pains us to see a family member make that choice. Perhaps your father does want to get chemo or radiation but does not want emergency life-saving interventions. There is a form he can fill out with the help of a provider, it's called a POLST, that can specifically name whether he wants CPR and other emergency life saving treatments. His answer might be no.
posted by latkes at 11:18 AM on June 6, 2017
I strongly recommend you try to get a referral to a palliative care specialist. He does not need hospice to get palliative care. The doctors, social workers, nurses, and spiritual counselors who work on palliative care teams are trained to help people and their families identify their wishes about care. They are also focused on increasing comfort.
Choosing not to get care is a valid choice, even if it pains us to see a family member make that choice. Perhaps your father does want to get chemo or radiation but does not want emergency life-saving interventions. There is a form he can fill out with the help of a provider, it's called a POLST, that can specifically name whether he wants CPR and other emergency life saving treatments. His answer might be no.
posted by latkes at 11:18 AM on June 6, 2017
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Couple of things I'm going to suggest. One of them is to see if it's possible to arrange some hospice care - I guess ideally that would be in your father's home. If it's available and he's ready for it (and, important to say that it doesn't have to mean that other treatment options have stopped), hospice care should give you some more proactive ways of dealing with those kinds of circumstances, without having to involve emergency carers who don't know his history & his preferences, and who have to read a very complex situation accurately & make a call under pressure. In the best case, it should mean that your father gets the chance to express how he wants his treatment to go at at time when he's able to think calmly about the options - and then have his wishes carried through by people who know him.
The other is a book that I read, called Being Mortal by Atul Gawande. I only finished it after my mother died, and a few of the things I learned from it would have helped me to see things differently in respect of her care. But, it was good to know that we'd done most of what we could while she was still around.
posted by rd45 at 7:07 AM on June 5, 2017 [4 favorites]