RP

RP died yesterday. I last saw him 5/4. He went to a nursing home. He was combative there and had been put on haldol which made him really "drugged". I stopped his medications because he was way too sedated. Apparently, on 5/12 he just stopped eating and drinking everything and then he died yesterday. I suppose he finally figured out how you commit suicide.

RP's dilemna

I saw RP yesterday. Perhaps I saw his wife? I don't know. RP is a patient of mine who was just brilliant. He isn't now. He has Alzheimer's. He is interesting because he has always known. Most of the people (probably at least 90% - no one has ever studied this) don't know that they have something wrong with their thinking when they have Alzheimer's. The ability to sensor our own thinking processes is one of the first things that usually goes. There is a lack of insight. Anyway, RP has always maintained that. I've had several Alzheimer's patients who know that they have it. He lives at home with his wife. He is estranged from his children. He has no siblings. His wife is having a difficult time because there are too many delusions. He thinks that she is trying to control him. He rarely thinks that she is his wife, he mostly doesn't recognize her. He wakes her in the middle of the night, because he doesn't really know time that well. He woke her up at 1:00am one night and wanted to talk to her about why she had stolen all of his things. He isn't physically violent with her. Sometimes she is afraid that he will be, because he is very verbally abusive and incredibly angry. He never was an angry man. She said that she knows he isn't "R". She knows that he is someone else, but she still gets shook up. She is tired. She thinks now that maybe she can't continue to care for him at home, and that she has to consider placing him in "a home". I sent the home health people to her house about three or four months ago. I sent the social worker and the psych nurses out there. I thought it was time for him to be "in a home" about six months ago, but I knew then she wasn't ready. I was hoping that she was ready about three months ago. The people who went to her home told her that it was time, but she couldn't. She is going to start to look into the details of how to get that done now. It isn't simple. There are serious economic issues. They aren't rich and nursing homes are very expensive. I've been through this sort of thing many times. Then there was a twist to the story. RP keeps asking her to help him commit suicide. She said she can't. I think she said she "can't". Maybe she said she "won't"? Anyway, she said "not for him". I couldn't understand her very well since her words weren't coming out and since she was trying to keep the crying on the inside. It wasn't really staying on the inside, she was just trying. RP wasn't talking the whole visit. He was just sitting there kind of nodding and listening. Then, when she brought this up, he said, "I thought of maybe stealing someone's airplane." (He was a pilot and a flying instructor.) He has also considered a car accident, but a plane accident is more effective. "You don't want to crash a car and then end up worse than you already are" is what he said. They don't own guns. She doesn't believe in guns. All of this information he has in his head. He doesn't know what day it is, or what year it is, but he knew all of this. I guess he doesn't know how to get on the internet and look up the hemlock society or figure out the doseage for an overdose of tylenol. Anyway, she won't (?can't) help him. She isn't Catholic. She is a kind of agnostic. She believes in the "universe". She believes that suicide is ethical. It's ethical for her. I really didn't say anything. I couldn't really say anything. I told her about a patient I had taken care of about fifteen years ago in Rochester. He was quadraplegic and he could just operate an electric wheelchair. He couldn't feed himself or transfer himself or pick up anything. So he would sneak out in his electric wheelchair about three or four times a year and try to rush out into traffic to get run over by a car. He wanted to commit suicide, he just couldn't DO it. He had no hands to do it with. RP is like him, but he has the hands - he lacks the brains.

Little pieces of RK

RK died this morning. He just fell down and his heart stopped. I took care of him for myasthenia gravis. He had a terribly challenging myasthenia. He didn't have the usual findings, because his blood tests (antibodies) for myasthenia were negative. His chest CT scan was also negative. He was very difficult to treat because the medicines didn't work very well. He did well with plasma exchange, but that didn't last very long. I did send him over to Mayo for a second opinion. I'm not really sure that they helped. I tried to send them over to a friend of mine who I think is a really smart neurologist for a second second opinion, but he and his wife didn't want to go. I tried treating him with a few different things, but none of them really helped until we came up with plasma exchange. I really expected him to do well and gain his strength back. I was totally wrong, though. I don't think he died from anything I did wrong. I reviewed his chart and I think I did OK at treating his illness. The only thing I can think of is that he could have had a pulmonary embolus which is a clot in your legs that then goes to your lungs that then causes a low oxygen in the blood which leads to an irregular heart rhythm. He didn't show any signs of a blood clot in his legs, though. Also, he still walked a lot (with a walker) which means that it wouldn't have been sensible to put him on a blood thinner to prevent that. So if that's what happened, then I couldn't have really treated it. He could have died from an aspiration which is when your weak swallowing muscles (which he had) mess up and your saliva blocks up your airways. I was trying to get him strong enough to avoid that, though. I had a pulmonary doctor helping me with his breathing at night, but that doesn't prevent this issue. He could have died from something I don't even realize that is related to his illness also.
He might have died from an unseen heart condition - his death may have been unrelated to the myasthenia gravis that he had. He was fairly young, but he was overweight. I wasn't treating his cholesterol levels or his heart. Sudden heart attacks are very tricky. We're lousy at predicting them, especially the ones that start off with a rhythm problem.
RK was definitely one of the best patients that I've had in my practice. I'm not sure that people think very much about how much the patients give the physicians. I know that a lot of the doctors that I know don't really think about it very much. I think they give the doctors as much or more than the doctors give them. I'm not talking about the money part of the practice: patients (and their insurance companies as a proxy for them) pay for services. That's business. I'm talking about the other part: the people getting together with people and "giving" each other some of themselves. We give people little pieces of us, and they give us little pieces of them. That's what happens when we "socialize". Socialization changes people in this way. It causes "group behavior". I and many of my colleagues work very hard to avoid taking the pieces of our patients that they have to offer; the offered pieces contain so much of the negative and draining parts of us that they aren't really good to "take". It's really nice when there are patients who come in and make up for that by giving us the pieces that are good. Those pieces can sometimes be a truly wonderful gift. Those are the little pieces that make people happy as doctors. Without those, it clearly isn't worth it at all.

What are things worth?

AM didn't come today. He had a confirmed appointment. However, his wife came without him to his appointment just to talk with me about his condition. This is a sensible idea, and it's good care. AM has dementia and there isn't really that much that I need to see him for. Mostly I need to help his wife to take good care of him. However, this is a medicare issue. Medicare doesn't allow billing for "family conference" with outpatient care. That's a silly thing, but that's what they do. So people have to pay for that themselves. I don't mind the conferences, but I mind not being paid for things, so I tell people that they'll have to pay for it without medicare. Usually, they don't want to have the conference if they have to pay for it. Of course, that's what Mrs.M chose to do. She "can't do that". The charge for that service is $80. This is a little less than what medicare pays for a patient visit. It is $10 less than what I am charged to clean out my dryer vent once a year. I'm not sure how we can fix a "broken health care system" under these circumstances. If the patient's wife "can't do that" (spend $80 for a consultation about how to take care of her husband) when that costs less than what most people who smoke spend on cigarettes, then we have a problem. There is a huge difference between what people are willing to TAKE and what people are willing to SPEND in terms of health care. I don't think that the service in question is worthless. However, my thoughts on the matter are irrelevant. Things are only worth whatever the market will bear. If no one will pay for whatever it is then whatever it is isn't actually worth anything, regardless of what your thoughts are on the matter. My new dog needs hip surgery (dysplasia). The vet said it would be about $500. To me, it's worth more. I don't know how he came up with his fee schedule for that procedure, but I'm very happy to pay what he's asking (I'd pay more, but I didn't offer that to him). Since I'm willing to pay him what he wants it's worth $500. On the other hand, if he were charging $2,000 (which I think a lot of Vets do) then (in my case) it would be worth $2,000. Of course, he'd do less operations (some people just "can't do that") so he could end up making less.
Next year, medicare will pay $150 for a new patient visit for a physician (it's $225 this year). That means that a new patient visit will be "worth" $150 next year. How did that visit lose all of this value this year? It's worth whatever medicare says it's worth as long as I continue to take medicare. I take medicare because if I don't I can't practice in this town and I don't want to leave. I take medicare because right now, I still make more than I could doing something else with my training. However, that is very rapidly changing. Soon, I will be able to make more by working at Publix. At that point, it will become more difficult to explain to my family why I am doing what I am doing. Next year, a lot of physicians will stop practicing because it isn't "worth it". I will still do it, but I still like being a doctor very much. I haven't had to cut down my patient visits to five minutes and see forty people a day yet. The guys who have already done that just don't have any more cushion left. They also don't like being doctors anymore.
Worth is very funny, and very complicated.

Everything is Good

I saw TB today. He is Cymbalta for depression. It seems to be helping somewhat. He has had intermittent bouts of depression for the last twenty something years following the death of his son. When his son died, he stopped going to church entirely. His wife (who is also a patient of mine) still goes. He tells me that he'll never get over it. I suppose it's hard to figure out that dying sons (and daughters) is good. There is such a tremendous loss and negative impact. I have another patient who has lost three children (actually I have two different patients who each have lost three children). It's bewildering. I don't really want to lose any of my children. I'm a very big believer in the notion that everything is good. That theory helps me to get through the day. When things happen that seem "bad" I decide that I don't understand these things properly. If I only understood more, then I would be able to see the good through the bad. It's a strange belief structure, I suppose. Still it seems to work most of the time so I use it. I learned it from my wife who is far better at it thanI am.
The good thing about disease and dying I understand. I realize that this is the only thing that gives any of us any value. It is the only reason that we actually HAVE TO be nice to each other and have compassion. We can break the law and go to jail. But that isn't always a bad thing, like in the civil rights era with civil disobedience. There is always the possibility of justification: "The law is not a good law". However, when we hurt other people we have to know that there is a consequence. These people have value. All people are frail and susceptible to disease and death. This makes them precious which is why at the end of the day we have to make sure that we were nice. Most of us don't get that until we have someone who is sick or dead. Then we tend to become nicer people. Most people become nicer over age. They understand their personal vulnerability more, and therefore the vulnerability of all of the other people. So disease and death do that for us.
I just don't understand why some of the people who die have to be someone's children. Now that's a very silly thing indeed.

Happy Being Sick

George Akerlof said "Happiness is knowing what you want to do and doing it." He is the 2001 nobel prize winner for economics. He wrote something important about the economics of lemons. The link between lemon economics and medicine is immediately obvious. People want to have lemons. However, people don't want to have illness. This is why the people I see here (who have illness) are not happy. The people I see at Nokomis Groves (where they grow lemons and sell ice cream) are happy (sometimes, of course). Then again, lemons (and ice cream) don't always make people happy.
I'm not really sure that Akerlof has it completely right. He has it mostly right. Reading the quote this morning I knew that this was one of the greatest problems facing my practice. "Knowing what you want to do" refers not so much to action in his comment. It refers to adherence to a moral code more than anything. It refers to behavior that generally conforms to one's thoughts of what is appropriate. In THAT context, happiness is possible with illness. We are not wanting to have illness, but we are wanting to behave a certain way under the conditions of illness. This is an important distinction. Many other people have pointed out that our response to the situation is paramount and the situation itself is secondary. My favorite quote on that topic is "Nothing is neither good nor bad but that the mind doth make it so." - William Shakespeare. Victor Frankl who was a concentration camp survivor was also very big on the idea that we choose our response to situations. He wanted to choose to not be too upset about being in a concentration camp (a lofty goal).
We are all going around doing some of what we want to be doing. We are also doing some of what we don't want to be doing. I'm not talking about what we're doing in terms of activity (golfing, etc.). I'm talking about living up to our own ethical code of conduct. Of course, some of us don't know our own ethical code of conduct, in which case we can't live up to it. The blend may favor more of one or more of the other - more doing what we want or more doing what we don't want.
This is the key to our response to illness. This is also the key to our response to dying. Illness are dying are not really different. People generally die from illness. Those patients who are mostly happy with life are mostly happy with illness and death. Those patients who are mostly miserable with life are mostly miserable with illness and death. So the only way to fight against illness is to develop the ability to do what you want to do under whatever circumstances are present.

Dying

Sometimes I say that dying is good. People are confused by this notion because it's not what our culture celebrates. The problem is that there is a certain amount of magical thinking that we do. We think like there is an option. There is no option. There is only the choice of dying. There is no such thing as living forever. All things that live also die. In fact, since thought is generally dualistic ("either this OR that") one cannot really have the notion of life without the notion of death. They create their mutual existance, since without one there is no distinction between two states. In that sense, death permits or even creates life. Non-dualistic thinking is very confusing because in that format there is neither life nor death which is a reality so hard to perceive most of the time it just isn't worth it to consider that. So to me, in the most simplistic way I can, I say "dying is good". The magical thinking that we have is that we may live on. We don't necessarily think someone will live on forever. We just don't necessarily ever accept that the dying time is NOW. It has to be later. Of course, it can't always be later. We just refuse to ever have it be now. So it's magical thinking. To be completely honest, we DO want eternal life for ourselves and loved ones. We just aren't honest enough to say it out loud because it would sound childish and unrealistic.
The problem with thinking that death is not good as that we don't accept it. We don't look for the "now" that death should come. We refuse the opportunity at all costs. But what is the REAL alternative? There are actually only two choices. There is dying - a good choice. The other choice is refusing dying, which is the choice that leads to suffering. People will go through all sorts of torture in order to try to fight what is supposed to be. This is mostly driven by fear of having failed to live, having failed to love, or some form of guilt about how it's ending up. There is "unfinished business" when the "now" comes. So it can't be time. This causes great suffering.
Yesterday I saw JD whose father RD just died. He was a patient of mine. He has suffered for the last couple of years with severe pain that we just can't alleviate. He spoke to me several times about suicide. He wanted to die to relieve the pain, and at 80 years old, he didn't think that however many years he had left should be spent in agony. His wife wasn't willing to go along with suicide. She didn't feel that it was ethical. So I never helped him with it. Of course, it isn't legal to help with that. So I actually never help with it. Except that people sometimes end up dying accidentally if they have easy access to it and permission. RD never would have gone through with it without his wife's blessing, though. So he persisted with pain.
JD was not exactly glad that he is gone. But she new that the "now" was right. She said something to me that was very critical. RD had written a letter over the past three years for his family to put them at peace with his leaving. It's a fabulous thing to do. I have to do that. My wife did that and I have meant to do that. Of course, the time to do that is "now". Not because it is obvious that my time is imminent, but it is true that we never do know when it is. So we need to always be at peace with this. We need to make sure that all of the people we love are always at peace with this so that there won't be so much suffering when the time comes.

It was hard for me when RD died. He died only one week after PN died. I can't really have my patients dying, no matter how good dying is. Loving is not entirely different from suffering. We become attached to people. I am attached to the patients. I like them coming here. They give me something to do, and a sense of purpose. So when they leave there is suffering. JD made it easier for me because one of the most difficult things for me is the family of the patients who die. I can't really alleviate their suffering very well. So if they don't suffer then I am happy.