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This post is a bit personal, but has such a unique lens as a psychiatrist myself and sharing this with other psychiatrists who would have a whole 'nother level of appreciating this recent event in my life. My father likely has a severe personality disorder (he also has an extensive trauma history, being raised in a third world country in major political upheaval). Like many individuals, never considered care and it affected our family throughout my entire life and still does to this day. He always had this intense distrust of physicians in the USA and instead trusted quacks and herbal remedies from our country of origin. In medical school, I noticed he had persistent urinary symptoms and considering he was in his 60s and of course never kept up with primary care, I urged him to do at least one visit in his life. To have his prostate checked just once. Turned out he had stage IV prostate cancer. But we were so lucky. This was 13 going on 14 years ago. He got world class treatment. Access to the best oncologists in our state.
Lately, the inevitable happened, the cancer is treatment refractory. His bone marrow functions are greatly declined and he's transfusion dependent both for PRBCs and platelets. Of course, in his usual style and stubbornness, he did not take lifestyle warnings seriously such as: keep caught up with nutrition (and drink plenty of ensure), continue to ambulate to prevent deconditioning and pressure sores, use the in home care we qualified for (extra layer of prn help in case he gets dizzy and starts to fall), take great care with fall risk areas, stop those stupid herbal supplements and take the evidence based medication (e.g. remeron for appetite and mood). Not surprisingly, weight loss greatly escalated, he became deconditioned and has zero insight in how great of a fall risk he is as well as how dangerous a fall is for him.
The day came, the fall happened. I rushed home and his nose is gushing blood like a fountain. He refused to let me pack his nose saying it was "uncomfortable" (low distress tolerance?). He refused to go to the hospital and said he wanted to lay on the couch (which he's spent his days doing instead of doing his home exercises) and that he wanted to sleep on this. I'm thinking...we gotta make sure he doesn't have an intracranial hematoma. His last platelet count was 13. Turned out he had multiple subdurals. For several months I've been trying to get him to sign his living will, write his wishes, assign a HCPOA but he'd always get agitated and want to stay in denial. In the ER we finally sat down and got him to verbalize his wishes especially since we were talking about, if it came down to it, does this elderly man with a terminal prognosis and severe loss of function as it is---want invasive neurosurgery. This is exactly what I was worried would happen one day, that a crisis would happen and we'd have no idea what to do. I told him we're so lucky he did not have a fracture and he's actually still lucid enough to talk about this before the hematomas got to expand too much. I watched his defenses just crumble and he defer all the decision making to me ("I don't know, you know the best"). On the one hand he says he desperately wants to live, then on the other he does all the things that set him up for failure (sound like some clinical situations we run into? lol). Then when there's a bad outcome, he verbalizes feeling victimized and displaces his anger on loved ones as well as the physicians who have treated him very well (accusing them of not trying to advocate for him--when in reality he's gotten VIP care because I'm a familiar face in the medical community and especially this academic hospital which is the best known hospital in the state). He wants to cling on to the belief that medical care can extend his life without compromise in quality. He said if necessary, he wants neurosurgery and to be full code. I tried to explain that although it can spare him his life, it can be one of severe morbidity such as paralysis and major cognitive decline. He didn't seem to fully internalize that. I don't think it's a cognitive issue, this is always how he's made decisions, by picking and choosing what parts he wants and does not want to believe. So, we communicated this all to the medical team--that he wants assertive management. He did fortunately say that he would never want to be intubated or placed on a feeding tube.
He made an outstanding recovery. The medical and neuro team were phenomenal. Gave him platelets and PRBCs. Subdurals stabilized. With me kicking him in the pants (a lot) he ambulated and regained a lot of strength (this was after he yelled at staff for bothering him and insisting he be left to rest, he hit staff too). His behavior was embarrassing, he was always ringing his call bell because he thought his tea was taking too long. My father clings on to this belief that he's descended from royal blood and deserves top treatment, although he was getting precisely that. I noticed he had a bed sore developing on his sacrum, due to chronic minimal movement. During rounds yesterday he had another fit with the residents and attending. He actually got all the transfusions he was scheduled for and demanded more. My father said that he's a dying patient (true) and that they are not being compassionate physicians who are doing their job. That they hold him in the hospital and take too long to respond, that everyone takes too long to respond and he's being deprived of the treatment he needs. That he is a dying patient, and there is no compassion here, that the "service" is unacceptable. He demanded to be discharged immediately if he was not actively getting treated. I told him, he's not helping himself by lounging in bed and demanding to not be bothered and demanding more transfusions. He's got severe thrombocytopenia that recurs even with transfusions and a bed sore that is about the break the skin. The more he moves and shows he's safe, the faster he can get home. Although all the staff agreed that home is dangerous for him (I feel this way too) but understood I promised him I'd at least try to keep him home and I'm paying out of pocket for 24/7 care and a hospital bed with a mattress specialized for pressure sores. I apologized to all members of the team on behalf of my dad.
It was palpable, the emotional weight this case has put on the whole medical team. I expressed that I'm well aware there is not medical necessity to stay in the hospital so the plan is discharge to home tomorrow. I could tell the medical team was treading carefully, and I told them it is okay, I understand exactly and agree with their treatment plans. Until the 24/7 care is established, I'm staying at home with him. Despite me being pregnant and I have another child at home. But this field has taught me acceptance, distress tolerance and interpersonal skills. Where there times I did not use the DBT, yup, you bet. lol, somehow there's something special about family members that makes you want to just "let 'em have it." I'm trying to get as fast as possible all the installations and safety equipment set up. I know I can't control him, he lacks insight about his physical limitations, and at least when he makes the next dumb decision, hopefully there will be enough grab bars and other set ups to make it harder to slip and fall (or least not as hard...). He's going to demand the caregiver be fired and sent away. But I know it leaves us with two options, offer enrollment in a nursing home which he will refuse....or allow him to make his own informed (and terrible decision) to continue on at his own risk. But he is decisional. We may be back at the hospital soon. But, wow, has this field taught me so much from a psychiatric and psychodynamic standpoint.
I'm not sure where this post stands on the forum rules. But I wanted to share and won't be upset if it gets locked or taken down. It's just that, you guys have such a unique level of understanding of a situation like this.
Lately, the inevitable happened, the cancer is treatment refractory. His bone marrow functions are greatly declined and he's transfusion dependent both for PRBCs and platelets. Of course, in his usual style and stubbornness, he did not take lifestyle warnings seriously such as: keep caught up with nutrition (and drink plenty of ensure), continue to ambulate to prevent deconditioning and pressure sores, use the in home care we qualified for (extra layer of prn help in case he gets dizzy and starts to fall), take great care with fall risk areas, stop those stupid herbal supplements and take the evidence based medication (e.g. remeron for appetite and mood). Not surprisingly, weight loss greatly escalated, he became deconditioned and has zero insight in how great of a fall risk he is as well as how dangerous a fall is for him.
The day came, the fall happened. I rushed home and his nose is gushing blood like a fountain. He refused to let me pack his nose saying it was "uncomfortable" (low distress tolerance?). He refused to go to the hospital and said he wanted to lay on the couch (which he's spent his days doing instead of doing his home exercises) and that he wanted to sleep on this. I'm thinking...we gotta make sure he doesn't have an intracranial hematoma. His last platelet count was 13. Turned out he had multiple subdurals. For several months I've been trying to get him to sign his living will, write his wishes, assign a HCPOA but he'd always get agitated and want to stay in denial. In the ER we finally sat down and got him to verbalize his wishes especially since we were talking about, if it came down to it, does this elderly man with a terminal prognosis and severe loss of function as it is---want invasive neurosurgery. This is exactly what I was worried would happen one day, that a crisis would happen and we'd have no idea what to do. I told him we're so lucky he did not have a fracture and he's actually still lucid enough to talk about this before the hematomas got to expand too much. I watched his defenses just crumble and he defer all the decision making to me ("I don't know, you know the best"). On the one hand he says he desperately wants to live, then on the other he does all the things that set him up for failure (sound like some clinical situations we run into? lol). Then when there's a bad outcome, he verbalizes feeling victimized and displaces his anger on loved ones as well as the physicians who have treated him very well (accusing them of not trying to advocate for him--when in reality he's gotten VIP care because I'm a familiar face in the medical community and especially this academic hospital which is the best known hospital in the state). He wants to cling on to the belief that medical care can extend his life without compromise in quality. He said if necessary, he wants neurosurgery and to be full code. I tried to explain that although it can spare him his life, it can be one of severe morbidity such as paralysis and major cognitive decline. He didn't seem to fully internalize that. I don't think it's a cognitive issue, this is always how he's made decisions, by picking and choosing what parts he wants and does not want to believe. So, we communicated this all to the medical team--that he wants assertive management. He did fortunately say that he would never want to be intubated or placed on a feeding tube.
He made an outstanding recovery. The medical and neuro team were phenomenal. Gave him platelets and PRBCs. Subdurals stabilized. With me kicking him in the pants (a lot) he ambulated and regained a lot of strength (this was after he yelled at staff for bothering him and insisting he be left to rest, he hit staff too). His behavior was embarrassing, he was always ringing his call bell because he thought his tea was taking too long. My father clings on to this belief that he's descended from royal blood and deserves top treatment, although he was getting precisely that. I noticed he had a bed sore developing on his sacrum, due to chronic minimal movement. During rounds yesterday he had another fit with the residents and attending. He actually got all the transfusions he was scheduled for and demanded more. My father said that he's a dying patient (true) and that they are not being compassionate physicians who are doing their job. That they hold him in the hospital and take too long to respond, that everyone takes too long to respond and he's being deprived of the treatment he needs. That he is a dying patient, and there is no compassion here, that the "service" is unacceptable. He demanded to be discharged immediately if he was not actively getting treated. I told him, he's not helping himself by lounging in bed and demanding to not be bothered and demanding more transfusions. He's got severe thrombocytopenia that recurs even with transfusions and a bed sore that is about the break the skin. The more he moves and shows he's safe, the faster he can get home. Although all the staff agreed that home is dangerous for him (I feel this way too) but understood I promised him I'd at least try to keep him home and I'm paying out of pocket for 24/7 care and a hospital bed with a mattress specialized for pressure sores. I apologized to all members of the team on behalf of my dad.
It was palpable, the emotional weight this case has put on the whole medical team. I expressed that I'm well aware there is not medical necessity to stay in the hospital so the plan is discharge to home tomorrow. I could tell the medical team was treading carefully, and I told them it is okay, I understand exactly and agree with their treatment plans. Until the 24/7 care is established, I'm staying at home with him. Despite me being pregnant and I have another child at home. But this field has taught me acceptance, distress tolerance and interpersonal skills. Where there times I did not use the DBT, yup, you bet. lol, somehow there's something special about family members that makes you want to just "let 'em have it." I'm trying to get as fast as possible all the installations and safety equipment set up. I know I can't control him, he lacks insight about his physical limitations, and at least when he makes the next dumb decision, hopefully there will be enough grab bars and other set ups to make it harder to slip and fall (or least not as hard...). He's going to demand the caregiver be fired and sent away. But I know it leaves us with two options, offer enrollment in a nursing home which he will refuse....or allow him to make his own informed (and terrible decision) to continue on at his own risk. But he is decisional. We may be back at the hospital soon. But, wow, has this field taught me so much from a psychiatric and psychodynamic standpoint.
I'm not sure where this post stands on the forum rules. But I wanted to share and won't be upset if it gets locked or taken down. It's just that, you guys have such a unique level of understanding of a situation like this.
