Yesterday's post made me think about times when I've pushed my patients to receive treatments that they don't want.
I know. Some of you are thinking that I'm a horrible person and that I am should respect patient autonomy 100% of the time. Pushing a course of therapy on a patient who doesn't want that is a deliberate breach of that.
Well I am going to tell you that things are not always that straightforward. Patients are sometimes in denial. Sometimes they are demented. And sometimes they just don't understand, even if you spend hours (and I mean hours) explaining why things are important.
To illustrate this, I will tell you about my patient from several years back, Mrs. Q.* I am using her example because what happened with her is something that I felt very conflicted about at the time, and resulted in part from the f-ed up nature of our medical system. Still, I think in the end she received the treatment that was in her best interests.
Mrs. Q was a pleasant 70s-ish lady with multiple cardiac risk factors and really bad peripheral vascular disease. She'd already had surgery to try to increase the circulation to her legs, and I *guess* it had been somewhat successful in that she still had them (her legs, I mean). She was admitted because she had developed another set of non-healing ulcers on one of her shins and feet. Vascular had attempted to treat her as an outpatient using an Unna boot, but when she had removed the boot at her house, she had peeled off layers of skin from her leg and foot. Some of the tendons and bones of her feet were exposed.
She was admitted for debridment of the wound, and when she came back from surgery, the culture grew MRSA, and her films were suggestive of osteomyelitis -- an infection of the bone that requires 6 weeks of IV antibiotics. Vascular surgery still felt that her leg was salvageable, and we agreed that this was the appropriate course of action.
Since she was an elderly lady with limited help at home, it was decided that she needed to go to SNF (a skilled nursing facility) for the remainder of her course of therapy. This would have been for about 4.5 weeks. She also needed a PICC line in which to receive the IV antibiotics. A PICC line is basically like a semi-permanent IV. It's *not* like a central line with all the infection risks that those portend. It is a peripheral line that would more or less obviate the need for someone to change her IV every 2-3 days.
Mrs. Q hated getting her IV changed. She also was terrified of losing her leg. A PICC line made a lot of sense for her. She also did not want to go to SNF, somewhat understandably, preferring to go home instead. Unfortunately, we could not allow that since she would have been unable to care for herself at home, and because there was nobody to help her.
Finally, she agreed to go to SNF. I guess she realized that she wasn't going to be able to make it home on her own if she left AMA. It was at that point that she decided to refuse the PICC line. The SNF we had gotten her into -- a feat in and of itself -- required that she had one so she could receive her IV antibiotics. If she didn't get a PICC, that meant she'd have to stay in the hospital for another MONTH, putting her at risk for all sorts of complications, and (to put it bluntly) costing the hospital an ass-load of money. Plus she hated getting her IVs put in and was not interested in amputation -- the only two other viable options. Refusing a PICC made no sense.
Anyhow, at the behest of my resident and the social worker who had gotten her the SNF placement, I cajoled, I begged, I pleaded, I listened to her concerns and attempted to address them, I tried to help her feel more comfortable and less worried. I did this over the course of several days. I spent a lot of time trying to work with Mrs. Q, to try to understand what her concerns were. Finally, I told her that I was going to put her on the list for interventional radiology to get the PICC, and she could think about whether she wanted the procedure while she waited down there. I told her that if she still really didn't want the PICC put in, she could tell the folks downstairs, and they would not do the procedure.
I felt HORRIBLE about pushing her so hard to do this, but I really felt that it was the best choice for her. Her best chance at keeping her leg and maintaining her independence at home. Her best chance for staying out of a nursing home and for her long term health and survival. I think she was in serious denial about the situation, and while it was completely understandable that she would be, and though I spent a lot of time talking to her about it, I don't think there was much I could have done to ease her burden. She was doing what she could to try to regain control of the shitty shitty situation. I know sometimes people just need a little time to process these things. Here there were time constraints -- albeit somewhat artificial ones -- and I couldn't wait any longer.
If she hated me for it, I completely understand why.
So what do you all think of this? Should I have stood up to my resident and attending and told them that I was not going to push her to get the PICC anymore since she had refused it? Have you tried to push treatments on your patients that you thought were in their best interests that they really didn't want?
*Details of this story have been changed to protect patient privacy.
16 Pearls of Wisdom:
Sometimes, as you point out, it becomes necessary. When needed, I do it as gently as possible. And document the hell out of it.
See "The Use of Force", by William Carlos Williams, M.D.
Thanks for the reference. I will check it out.
Here it is. Excellent short story. Maybe his best.
Great post OMDG!
I've always felt a little bit of conflict regarding patient autonomy and necessary treatments that are refused. I had a patient with a similar story - he had a gangrenous foot and it was going to kill him if he didn't get it amputated immediately. He initially agreed to the surgery but then changed his mind and said that he only wanted the 4th and 5th digits removed, which would have done nothing for him. The residents were getting extremely frustrated and called down the staff surgeon who has a fairly abrasive personality at the best of times.
He goes right up to the patient's face, tells him to pack his belongings, go home and call a funeral home and buy a casket for the following week! The rest of the staff was shocked that he said something like that but the patient finally agreed. I saw the patient a few months later in an outpatient clinic.
The surgeon's 'communication skills' would have been a no no in any ethics textbook but he was effective in getting the patient to do the right thing for himself.
Years ago I had an elderly patient at the hospital, with a MASSIVE non-survivable hemorrhagic stroke. The neurosurgeon and I met with the family for quite a while, and I talked, and talked, and talked, and they didn't seem to grasp that this was the end.
Finally, with the lack of decorum that only a neurosurgeon can have, he said, "Look! He's going to die! No shit!"
Appropriate? No. But, oddly enough, in this case it worked very well. His blunt exclamation got the point across to them better then my approach did.
Bottom line- it takes all kinds. And every scenario, patient, and family are different. Part of the ART of medicine is being able to read the situation and tailor your approach to fit it.
I can totally see issues like this popping up all the time. Being nice can backfire in that the patient doesn't feel the same urgency that you understand because you have a better understanding of the medical situation. And all the patient can see is what they're losing in the short term.
In this situation, it would have been difficult, but I would have supported that decision (assuming it was explained to her that not having the procedure would lead to a bevy of problems including the likely loss of her leg and further limit her mobility).
But at some point, the physician shouldn't be made responsible for someone else's decisions. If they choose to do something AMA, it's their right to suffer the consequences. I see it more as a burden to the physician, not the patient.
It's a crummy situation to be in, that's for sure.
IIRC, the blogger at Musings of a Dinosaur eloquently explained that physicians should remember the patient actually doesn't WANT any treatment - the patient would much prefer to not be sick in the first place. This is a wise observation, and I try to remember this when I'm discussing options with a "difficult" client.
It's difficult to remain objective, especially when the patient is actively dying and time elapsed worsens the prognosis.
OR -- Exactly. This particular patient's treatment of choice would have restored her to her healthy previous self of 30 years prior with no pain or complications. She was refusing her illness as much as her treatment.
As a side note, it is a giant pet peeve of mine when physicians refer to their patients as "difficult." It often reflects one of two potentially overlapping things: a) that the patient disagrees or won't comply with treatment recommendations, or b) that the dr simply doesn't like the patient (perhaps for the above reason), and is exercising the powers of transference to make it the patient's problem rather than their own.
When I used to work in a nursing home, we had a very intelligent resident with advanced dementia. She was very depressed, never wanted any kind of help in her room, refused to come out to eat, and refused to take care of herself or let someone get her cleaned up for days at a time. I was instructed one day that I was to bathe her even if she refused. I ended up dragging her to the bathroom while she kicked and clawed at me the entire time, insulting me, and threatening to call her (deceased) husband, a lawyer. I still feel awful about that. She could have easily gotten hurt just from the degree that she struggled. In retrospect, I'm still not even really sure what the best way to go about it would have been.
I had a woman that brought her dog in for intractable pain. She was planning on taking it to her vet the next morning to have it done. The reason? She did not want to drive 30 home from my hospital with her dead dog. This dog had pain so bad that there was no way I was going to be able to give it a single shot of hydromorph or morphine and have it last more than 4-6 hours.
I was very blunt but told the woman that she was waiting for her own benefit and not her dog's...that tonight, even if she had a "live" dog in the car, she would be just as upset because she knew it was going to be euthanized in the morning. She realized I was right and euthanized that poor dog.
I have had other cases, usually trauma cases where people cannot afford the treatment and people have wanted to take their dogs home to "die naturally" or to shoot them or whatever. I have threatened to call animal control. It would be similar to having a parent deny treatment for a child with a flail chest...not something they can do at home.
KateA -- There was something like this on Dear Prudence this week, I think about a person who was upset by her friends who brought their pets home in horrible pain to "die naturally." It's on slate.com (Monday's edition I think). You should take a look. I was a little horrified by the response (i.e. that the lady should mind her own business and not intervene on behalf of the animals).
Did your patient ever leave the nursing facility?
Anon -- I actually have no way of knowing that since we have no access to the SNFs records. I don't even know if she was ever readmitted to the hospital since as a PhD student I no longer have access to clinical records (also, it would be illegal for me to access them now). My guess is that she has probably passed away, most likely from an MI or stroke. Best case she's lost the leg by now.
>>it is a giant pet peeve of mine when physicians refer to their patients as "difficult.">>
Oh, I understand. One major reason I became a veterinarian, not a physician, is I almost universally like my patients. Clients, well, let's just say there are some to whom I can relate with more ease.
Some of my most satisfying experiences as a veterinarian have been in hammering out relationships with formerly distrustful, doubting clients whose respect I've finally earned... whether or not I've actually fixed the patient. I've also learned some people are chronically dissatisfied. For those clients I try to provide good care with the knowledge they'll pass through my practice, move on to the next, and probably land back with me sometime in the future. One such person who recently returned to my fold actually pretended she'd never met me. We'll try again.
I definitely think there are times it is a physician's responsibility to push a patient towards an appropriate treatment. You can't force the patient to do the right thing for themselves, but you can do your best to help them see why something is the right course of treatment for them.
I'm not a doctor of any kind. I'm just a carpenter and I sometimes get injured on a job. From time to time, I have to go to the ER to fix a problem too big for me to deal with myself. However, I try and make sure I get the very minimal treatment required to sufficiently repair the damage. I had to make some decisions that was AMA.
It's not because I'm trying to be "difficult". It's due to the fact medical treatments are very expensive and I don't have any health insurance.
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