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As a teaching practice, we take care of patients from other local care facilities who suffer from mental illness and have an acute medical illness. As I am on the hospital service for these two weeks, I am spending time with these patients as well as learning the habits of the physicians employed by these facilities. We have a patient with end stage dementia who has been bounced back and forth from our facility to their facility, a situation for which I feel bad. This patient has had a decline over the past 2 months, changing from a walking (though non-communicative) demented person to one who is now confined to the bed and no longer eating. While we have been trying to get the health care facility to acknowledge that the end of this person’s life is approaching, the facility continues to send her back for a “work-up” to see if we can make her “better.” It is my belief that the patient is the biggest loser in this case.   

As my Dad pointed out on this week’s (not often enough) phone call, we are all going to die of something. Dementia is not often a cause of death in our statistics but is often a contributor. People who are demented forget to eat, forget to drink, forget how to clothe themselves, forget how to walk, and once bed bound are likely to die of pneumonia. Despite this fairly predictable course, according to the Alzheimer’s Foundation in 2005 only 11% of people who were in a nursing home for dementia were refered to hospice and non-palliative care was quite common in residents with dementia. This included tube feeding, laboratory tests, restraints, and intravenous therapy.   

The Alzheimer’s Association identified the following as true regarding people living with dementia admitted into long-term care facilities:   

1. Aggressive medical treatment for residents with advanced dementia is often inappropriate for medical reasons, has a low rate of success, and can have negative outcomes that hasten functional decline and death.   

2. Quality palliative care is an effective alternative to aggressive treatment and is closely related to staffing and training in nursing homes.   

3. While there is an expanding body of knowledge about the risk and benefits of treatments for persons with advanced dementia, there are significant barriers to translating that knowledge to practice.   

#3 is especially true in the case of our patient.   

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I grew up in Baton Rouge, Louisiana in the 1960s. My neighbors on all sides were my age, Catholic (as was I), and attended the same church/school/parish activities. My mother’s brother lived down the street with his large Catholic family. If someone missed Mass, we all knew before the final hymn who missed, why they missed, and whether it was contagious. I was reminded of this because of the family activities that the holidays bring as well as the Christmas present that I was given by my family. The present was a copy of American Catholic: The Saints and Sinners who Built America’s Most Powerful Church,  a book about the rise of the Church from the mid-1800s to today. Much of the book is focused on the mid-20th century, and it brought home just how unusual our home/parish/neighborhood was. In other parts of America by 1960 the suburban exodus enforced mingling of people from varied backgrounds and religious beliefs (albeit overwhelmingly Caucasian) making the church less relevant for Catholics. But for us, growing up was a Catholic, Cajun experience where Father Funke was involved in our daily lives.

As a member of the ethics committee for the hospital and one of the faculty members who offers ethics instruction to medical students, the importance of autonomy  has been drilled into me. If the patient has expressed a wish on how they would want things to go given a specific set of circumstances, that is what should happen. Visiting with my family, I think of how unusual it is for the exact circumstance to have been thought of, discussed, and decided prior to it happening. As a physician who tries to get families to understand this, I know how often the system is found to be lacking. As the designated surrogate, this worries me as well. I often think that there must be a different way to make such decisions. I think back to my upbringing and wonder if the concept of utilizing complex relationship to assist in such decision making might help. The Catholic bishops have issued a set of directives regarding medical ethics for Catholic health care providers and institutions. In it, they identify the individual’s obligation (use ordinary or proportionate means of preserving his or her life) and when the individual may opt out (a person may forgo extraordinary or disproportionate means of preserving life). Knowing someone is Catholic, then, could in theory help me as physician to direct therapy.

Or not. Let’s take artificial nutrition as an example. The use of artificial nutrition would seem fairly straightforward. The bishops state that “There should be a presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient.” Unfortunately, the benefits often aren’t that clear. We do know it prolongs life in persistent vegetative state and short gut syndrome. We don’t think it prolongs life in people with advanced cancer or Alzheimer’s disease (but don’t know for sure). We think that people who elect not to have such intervention and subsequently die of their disease do not seem to suffer any more than if they had elected to receive such therapy.

So when does the benefit outweigh the burden? Is it only when death is imminent, as some bishops state? Is it when after a massive stroke the patient is unable to function and will be a burden to caregivers? Is it after a period of time, when it becomes apparent that the burden has become intolerable?

How we die of our terminal illness almost always reflects more than just biological destiny. When I have a patient who is a Jehovah’s Witness in the hospital, it is not unusual for the church to send a representative to sit at the bedside. While I hope they are present to provide comfort and solace, it is common knowledge that they are also there to prevent accidental administration of blood products as well as to prevent a decision on the part of the patient to accept blood products should they be offered. However, Father at the bedside is not how most of my patients (Catholic or otherwise) have their values enforced in my experience. In practice, I find that we tend to have an internalized set of values that we draw on in times of stress. Often, things are not black or white.  Proportionalism is one descriptive theory for how we deal with actions that in themselves are neither right nor wrong but could lead to an wrong outcome (such as a premature death).

What does this mean for me as a physician? It means that there is no easy answer. I have to give the patient (and his or her surrogate) as much information as possible in such situations to allow them to weigh it against their internal (or external) value system and make the best decision. As a patient, it means I need to choose a surrogate who shares my “moral compass.” As a potential surrogate, I have to admit that I will use my knowledge of the person for whom I am asked to make decisions rather than parrot back what I thought I heard from their lips.

Length bias

Sir Patrick. I know your Cutler Walpoles and their like. Theyve found out that a man’s body’s full of bits and scraps of old organs he has no mortal use for. Thanks to chloroform, you can cut half a dozen of them out without leaving him any the worse, except for the illness and the guineas it costs him. I knew the Walpoles well fifteen years ago. The father used to snip off the ends of people’s uvulas for fifty guineas, and paint throats with caustic every day for a year at two guineas a time. His brother-in-law extirpated tonsils for two hundred guineas until he took up women’s cases at double the fees. Cutler himself worked hard at anatomy to find something fresh to operate on ; and at last he got hold of something he calls the nuciform sac, which he’s made quite the fashion. People pay him five hundred guineas to cut it out. They might as well get their hair cut for all the difference it makes ; but I suppose they feel important after it. You cant go out to dinner now without your neighbor bragging to you of some useless operation or other.

Gorge Bernard Shaw The Doctors Dilemma

What is the appropriate interval for breast cancer screening in 40 – 49-year-old women? Could this be a part of the “government” conspiracy to limit early detection of breast cancer in an effort to further the “culture of death“? Conversely, are certain mammograms akin to removing the “nuciform sac” in that they accomplish nothing other than extracting money from patient’s health insurance? What’s a doctor (and a patient) to do?

If only it were an easy problem. Mammograms, as it turns out, are not a “prevention” technology but are used for “early detection”. The US Preventive Services Task Force, a group of scientists (some of whom I consider my friends) who specialize in looking at the risks and benefits for various preventive and early detection methods that the average citizens (not patients or people with known problems) should be exposed to. It is because of the task force that we know the benefits of early detection for hypertension (very high benefit, very low risk) and as opposed to those of screening for heart disease (very little benefit to early detection, lots of risk if positive screening turns out to be untrue (a false positive)). They have critically looked at the literature and have created a tool that allows one to determine which prevention and early detection measures are right for them.

Why the problem with early breast cancer detection? The New England Journal of Medicine points out that direct problems include the very low risk from the radiation exposure, along with pain, anxiety, and psychological distress related to the procedure. False positive results are particularly problematic in this age group, with one study suggesting that for every case of breast cancer detected in women 40 to 49 years of age, 556 women have mammography, 47 have additional imaging, and 5 have biopsies. Part of the problem is the very low rate of breast cancers in these women, with only 15/1000 developing cancer between 40 and 49, 2 dying of cancer, and 21/1000 dying of everything else. This is half of the rate in subsequent decades. The other problem is that cancers are less likely to be detected in younger breasts (false negative tests) and some cancers are so rapidly growing in this age group. Even mamograms every 6 months wouldn’t result in any benefit from early detection for women with rapidly growing tumors and mamograms every other year would be sufficient for those with slower growing tumors (length bias, see picture above).

Turns out that what we want to do well is prevent disease (hence that push for immunizations). It is also important to detect and intervene in cases where the person would develop disease if left to their own devices (such as smokers, and people with early hypertension). While we would like to believe that early detection is always preferable to late detection with regards to treatment, that is not always the case. It is clear that the average woman of average risk benefits from early detection when older than 50 until about 70. For women from 40-49 it turns out that knowing the patient’s  family history and genetics and as a physician-patient team making sure that the correct test is ordered is equally important. Another arguement for the medical home?

01carey600It was my hope that by this time we would have help from the feds to enhance primary care training, changes in residency funding to direct money to primary care departments, and management fees which would help us to pay for the care we deliver to our 750 diabetic patients among other things. Instead, we are in the middle of what appears to be a rather mean-spirited discussion regarding the age-old question of just who is my brother’s keeper.This has gotten me to thinking about the problem of the commons

Garret Hardin described a scene in an English common pasture “Picture a pasture open to all. It is to be expected that each herdsman will try to keep as many cattle as possible on the commons.” He then describes his vision of what will happen if all are allowed access unchecked.  “Adding together the component partial utilities, the rational herdsman concludes that the only sensible course for him to pursue is to add another animal to his herd. And another; and another…. But this is the conclusion reached by each and every rational herdsman sharing a commons. Therein is the tragedy. Each man is locked into a system that compels him to increase his herd without limit–in a world that is limited. Ruin is the destination toward which all men rush, each pursuing his own best interest in a society that believes in the freedom of the commons. Freedom in a commons brings ruin to all.”

Garrett has since been somewhat discredited. It is not clear that the resources as they appeared limited were so in actuality. This seems to be, however, the fear of the Republicans with healthcare. They seem convinced (and I have to admit that there is some evidence to support this) that those who are now uninsured (and have no current access to the commons) once given access will consume unlimited resources. Interestingly, they feel like those who now receive Medicare are entitled to unlimited access to the health care commons…an interesting stance.

What is really interesting is that Ezekiel Emanuel has been accused of formulating “death panels” as a solution to the problem of the healthcare commons. What has articulated is a way out of this problem of the commons. He clearly believes (as do I) that a certain amount of the “health care commons”  should belong to all of us. To solve the problem of overuse, he suggests that we would have to select what is included in our “commons”. If we don’t want to be in a group that funds terminations for example, we don’t select that group. I would like to see this further articulated as it seems preferable over people who have no money for health care dying in the street to me.

As an academic physician, I only spend about 10 hours a week in direct patient care without residents to teach. I have been in Mobile since 1991and so have a number of folks who I have been treating for almost 20 years. On Friday, I saw 13 patients ranging in age from 10 (a person who when I delivered her weighed 500 grams and is now an honors student) to 89 (whom I did not deliver but who still drives herself to her appointments). In the time the patients were in the office we prevented the flu and pertussis (through vaccination), worked towards early detection of breast and colon cancer (through facilitating screening) and treated a number of acute and chronic ailments. What I did not do is have a discussion about end-of-life care. I was glad the subject never came up.

It’s not that I’m averse to having the discussion. In fact, on your porch over a glass of wine or  professionally if I’m caring for you in the hospital I’ll be happy to delve into the intricacies of whether a feeding tube is a heroic measure required by the Catholic faith. But in an office visit, given that I’m spending 15 minutes with a patient and my staff is busy arranging all of the other aspects of his or her care, that discussion is a time killer.

This is why I am following the “death panel” discussion with such bemusement. When Betsy McCaughey and Jon Stewart are having an esoteric discussion about what is in HR3200, I am wondering just how much they are going to pay me to have this discussion and how they expect me to document it. Ms McCaughey was ticking off the required elements and I’m thinking to myself that if I miss one of these, will I be accused of fraud if I try to bill for the discussion. I am all for the discussion and all for being paid a fair rate for having the discussion. In fact, it has been my experience that most people are 1) aware they will eventually die (teenagers and Boomers excluded)and 2) would like to be assured a modicum of dignity as that time approaches. It is my job as a Family Physician to help them with that.

My problem is with the approach. My conversations with patients about this topic do not tend to happen in a rational 90 minute sit down in an exam room. Rather, they tend to be in 15 minute blocks over a number of visits. As patients become more aware of the limitations of modern medicine, the conversations tend to become more focused.

What I would like to see is not an effort to better pay me for piece work (If I give a flu test I get an extra 10 bucks, I wonder what I’ll get if I talk someone out of a ventilator for their COPD?). Instead, what I would like to see is additional reimbursement (and a lot of it) for always or almost always doing the right thing. That would certification of the practice, similar to hospital certification. The Patient Centered Primary Care Collaborative is pushing for this with NCQA as the potential certifying agency. Then I would have to have a policy in place about, say, Advanced Directives requiring that I document elements of the discussion for certain patients and proof when an inspector came that I was actually doing what I said I was doing.  No more tick boxes, no accusations of fraud, nobody like Betsy McCaughey coming between me and my patient. A guy can dream, can’t he?

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