Speaking of patient autonomy: Allan Macurdy

[SharonH, RN]

The thread about a LTC patient being allowed to smoke without the permission of the family started me thinking about an article I read in the CNS Journal this weekend about the death of Allan Macurdy. Mr. Macurdy was a disability rights attorney who himself suffered with Muscular Dystrophy. He had some very powerful thoughts on the rights of people with disabilities and the medical establishment:

http://www.mda.org/publications/Quest/q61mastery.html

....I learned many things about the medical system that had nothing to do with treating disease or caring, but everything to do with power. This system, like any other human system, is made up of political phenomena: hierarchies of professionals, chains of command, patterns of authority, institutional agendas......

He tells of two stories about his interactions with nurses. In one scenario, the nurses act admirably, in another not so much.

The second principle that governs my relationship with the medical system flows from the first. As I'm the only legitimate decision maker, no one else is permitted to speak for me. Again this principle seems unassailable, but in practice it's a position more often observed in the breach. Far too commonly, a doctor or nurse enters my hospital room and speaks to another professional or to a family member rather than to me.

There is a bit of irony here. Mr. Macurdy was an attorney and fear of litigation is often an unfortunate motivator.

It really made me think about the interactions I have with my patients and their families and I can think of some stories on my own, probably most of us can. We all like to think that if the situation came up, we would hand it off to ethics committee etc. but I'm betting that far too often, we do what's easy(and arguably not right).

[ShayRN]

I try very, very hard to address the patient rather than the family. Most times I will specifically ask, "If having your pain under control means your sedated and cannot interact with your family, are you ok with that?" Most times they say yes. Most times the family want them awake. I don't understand that, mom/dad screaming in agony but hey what the heck, they are awake, right? Blah, pure selfishness, IMHO.

[Indy, LPN, LVN]

I particularly appreciated the part where he addressed that stress aggravates respiratory distress, so a patient in distress can not benefit from the treatment without controlling their emotions. (I didn't use quotes because I don't think it was exact.)

It can be so frustrating to deal with the patient who has an exacerbation because he got mad, but it's very helpful to have it explained from the patient's point of view so well. Some of the ideas in the discussion on power, have never crossed my mind but they will now.

[nursemike, ASN, RN]

Thanks for sharing a wonderful article! Obviously, I don't treat people the way the author describes. Obviously. Usually. Damn.

I recently had the rather poignant experience of caring for a "non-compliant" diabetic patient a day or two after discussing with my own physician that I am a "non-compliant" diabetic patient. (I don't mean to be non-compliant, but as my doctor observed, not many do.) It was a fairly object lesson as to why I need to become more compliant, and I am trying to, but it also makes it a lot easier to understand my patient's occassionally unwise choices.

That's a big part of the problem, isn't it? Competent does not mean wise, or prudent, or smart, and even if it did, wisdom and prudence often amount to weighing risks versus benefits. If I believe a piece of peanut butter fudge or a cigarette has benefits to me that outweigh their risks, who has the right to make that choice for me? And how can I make that choice for someone else?

My unit has a fairly deplorable fall rate. It's something we are working very hard to correct. Part of our problem is that many of our CVA patients are impaired in their ability to make decisions. There are clear physiological reasons why they are not entirely competent, but even so, maximizing their autonomy is important to their recovery. It's important to the rehab process to push the limits of what they can do for themselves, and the rehab process needs to begin at admission.

It's tough enough with patients who are OOB at 0400 to get ready to go feed the chickens, but a lot of our falls are patients who are AOX3 and don't want to "bother" someone to help them to the bathroom. I think it may help a little to assure them that it's no bother to do what we are getting paid to do. I'm sure it helps to proactively offer to assist them to the bathroom, rather than waiting for them to ask. But I'm also sure that what a significant number really mean is that they don't want to be dependent on someone else for something so basic.

During his recently hospitalization, I saw my competent, intelligent, and independent father occassionally spoken to as though he were a child. Though infuriating, I take some comfort in noting that these incidents were very much the exception. Most of his caregivers were clearly able to grasp that his sore foot was impairing his mobility, but not his mind. But it's also illuminating to realize that from my Dad's perspective, these few exceptions largely define his experience. He says, himself, that most of his nurses were at least good, and some were outstanding, and his satisfaction with his doctors was similar, but when he thinks of the hospital, what he seems most often to think of are aides (and a couple of nurses) who were rude or condescending, phlebotomists talking "baby talk," physical therapists who didn't listen, and numerous other indignities, large and small.

[SharonH, RN]

That's a big part of the problem, isn't it? Competent does not mean wise, or prudent, or smart, and even if it did, wisdom and prudence often amount to weighing risks versus benefits. If I believe a piece of peanut butter fudge or a cigarette has benefits to me that outweigh their risks, who has the right to make that choice for me? And how can I make that choice for someone else?

Precisely. It's easy to respect someone's autonomy if they make the "right" decisions but as soon as they begin to act or behave in a way that does not reflect our teachings or beliefs, then something must be wrong with them. Are they confused? Incompetent? Noncompliant?

[Virgo_RN, BSN, RN]

I wish more patients were so invested in their own care.

[nursemike, ASN, RN]

I wish more patients were so invested in their own care.

Excellent point! It occurs to me that one of the drawbacks of being overly paternalistic and failing to respect patients' autonomy is that we're encouraging them to be passive receptors of care, rather than participants in their own recovery. Hard to persuade a patient he needs to sit up in a chair for two hours when you've been saying all night he has to use a bedpan because he can't get OOB to use the toilet. (Not to say that recognizing this makes it easier to find an extra 45 minutes to help someone to the BR and back...)

[HappyPediRN]

I had the pleasure of caring for Allan in his final days. He did things just the way he wanted to. An incredible man.