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Monday, May 13, 2013

A rant on the hopelessly ill (of course it's not their fault) and how maybe mass media could help

I have been working in the intensive care unit and have been finding it ethically difficult to facilitate the care of the some of the hopelessly and incurably ill patients who rotate through. Many of these patients live in nursing homes that are qualified to manage patients on chronic life support, not just tube feedings or oxygen, but ventilators and tracheostomy tubes. They can live like this for years, with deepening bedsores and pasty disused limbs, foley catheters, rectal tubes or colostomies, with gradually increasing colonization by multidrug resistant organisms. They are brought to the hospital and then the intensive care unit when the bacteria colonizing their endotracheal tubes finally take hold and cause pneumonia or when a catheter in a blood vessel or bladder becomes infected or when one of their vital signs tells their caregivers that some unspecified thing is terribly wrong.

Once a person is on chronic life support, usually nobody talks to them anymore and it is assumed that they will continue as they are until something happens that no force on earth can stop and they finally take their eternal rest. We, as the medical establishment, must continue to use all of the fancy medications and procedures at our disposal to keep them alive. Usually nobody even asks the family anymore if they think that we should stay the course. None of the recipients of this care--family or patient--hear that care like this costs a million dollars a year or more.

Occasionally we can't stand to do the same heroics again or add more complexity and expense for clearly horrible quality of life, and then there are debates with all of the many involved people (and there are MANY involved people with each one of these folks) about medical futility, and what is the value of a life when it has become so very small. These debates are never settled for good, and are new and interesting for every patient, with heated opinion and bitter disagreement and misunderstanding. I spent hours, this week, convincing an ethics consultant that doing chest compressions on a 90 year old non-verbal demented woman with lung cancer and, most importantly, critical aortic stenosis was unconscionable, even though, 7 years earlier, when she could still talk, she had asked to be "full code." I explained that chest compressions do not cause blood to flow through a heart when the aortic valve will no longer open more than a smidgen, and thus the procedure was as futile as removing a non-diseased appendix because a patient requests it.

But it is not necessary to revisit the debates of medical futility, at least not tonight. People with good hearts and good minds, invoking the words of scholars and philosophers, disagree vehemently on what is futile and when a physician's responsibility to do no harm outweighs a patient or family's desire for us to do "everything."

What we really need is prevention. We need to work on the attitude and the economic pressures that lead people to be in advanced care nursing homes and intensive care units when they have no hope of gaining any sort of independence.

Some doctors think a lot about this sort of thing. They suggest that perhaps patients would not ask for million dollar a year heroics in order to lie in beds getting fed through tubes in nursing homes if they, or the family that requests that we continue to treat them, had some sort of financial responsibility. If they had to pay even one tenth of the costs, or one one hundredth of the costs, there would be considerably less of this kind of care. Perhaps it isn't such a bad solution. Even the very richest of people would have to face the question of the value of life support if continuing it meant $100,000 out of pocket costs per year. One might ask if there might be some actual societal value to maintaining a patient on life support when they are never going to be well enough to be off of it, and one might think of Steven Hawking, whose remarkable brain is able to function because his shell of a body is supported in all ways by medical technology. There are undoubtedly other examples, but I can't think of any.

I'm told that the amount of excessive end of life care that I have been seeing this year is nothing compared to how things are done on the east coast of the US, in New York or Boston, at the larger hospitals. There are wards devoted entirely to patients on chronic ventilator support, most of them severely brain damaged. These patients are not paying privately and are not on private insurance but usually have both medicare and medicaid, and are using the same dollars that are pinched tightly when it comes to providing care that might lead to greater independence and function in other recipients.

So--prevention. We need, somehow, to communicate to patients what we know as physicians about the human cost, as well as the very real economic cost, of keeping people alive by artificial means when they become very old or very sick or horribly injured. Americans are on the very edge of the spectrum of world societies in terms of valuing the individual and individual autonomy over the needs of the family or the community. Nevertheless, most people, when asked, will say that they do not want to live so as to become a burden on their family or friends. In a time of crisis, though, it is of great biological value to think only of oneself, and so decisions are frequently made to "do everything" when a person is close to death, which means that they must, after being saved, get really sick many times and eventually only die because we, as caregivers, are not quick or clever enough to save them. This equates to misery and loss of dignity at the end of life.

The end of life for the various people we care for can go different ways in the hospital, depending on the patient's or family's goals of care. If we have heard, quite clearly, that a patient wishes to die in peace when it seems that death is coming, we respond to a drop in blood pressure or high fever or loss of consciousness with clean sheets, soft music, coffee and cookies in the room for family members, pain medications if they are needed, clergy visits if appropriate. If we have not heard that, people rush to the bedside, shake and prod the patient, put in IV catheters, run fluids, perform CT scans, move the patient to an intensive care unit, attach EKG leads, voices are raised, invasive procedures performed. In the first case, the patient will usually die, though definitely not always, and the second case the patient will sometimes die, but may be resuscitated to do it again, hours, days or weeks, and occasionally even years later. Both scenarios have their place, but the first is vastly underutilized.

The cost of the aggressive approach is not inconsiderable. For the day of the decompensation, depending on what actually happened, costs run upwards of $10,000, and the whole hospitalization probably more than $50,000, even if we are unsuccessful. We don't like to think of money as influencing any decisions about life and death, but they are inseparable. Money used at the very end of life is not available for prevention of illnesses in other patients, which interventions cost much less and buy much more happiness and productivity. If our electronic medical records simply told us what each thing we ordered cost, and patients had easy access to that information, behaviors would be much different, and overuse of technology would be less common. We have tripled the use of imaging procedures such as CT scans and MRIs in the last 15 years without any clear improvement in outcomes, and it is likely that reducing our behavior of frivolously doing imaging will probably have no negative effect on our patients' health. Our overuse of antibiotics, especially expensive ones, is fueling an epidemic of drug resistant organisms in our hospitals, so if some financial information made us do this less, it would be great.

Because taking care of hopeless resuscitation disasters is very emotionally draining, it increases physician and nurse burnout and worsens the quality of care for everyone. I'm torn, much of the time, between the fact that I love working with excellent ICU nurses and discussing physiology with cardiologists and intensivists and the fact that the patients for whom I do this are without hope for recovery and are huge resource sinks. I even like the patients, those who can communicate at all, I just feel terrible about the system that got them there and put them in their impossible situations.

Maybe we, as a society, really do want to support patients with all sorts of life support technology rather than allowing them to die, unless they specifically refuse such treatment. I'm pretty sure there is no clear consensus on the subject. If we do want to do this, we must gracefully accept the fact that there will continue to be more people in this situation lasting even longer and costing even more as our technology improves. This means that we will be spending progressively more health care dollars at the end of life. If we also want to be able to take care of patients who have simple and easily treated conditions, our healthcare spending will rise significantly as a proportion of our national budget, primarily through the Medicare and Medicaid programs.

As silly as it seems, I think the solution may not be in forcing doctors to make more difficult decisions, but in effectively communicating what we know with folks who have very different backgrounds. In Brazil women used to have huge families, lots of children, which was economically very hard on the country as it modernized. When they got television, they started seeing soap operas in which women had only a couple of children, or even none, and had good and interesting lives. They then started having less children. No public health campaign, just a sort of sharing of stories, using the wonders of mass communication. We have these well loved doctor shows, ER, Gray's Anatomy, House, which show how cool it is to be in a hospital having technological medicine happen to you and being resuscitated from death to good normal life. These are the stories that are fun to watch and they are mostly not true. Could it be possible to make a popular TV show that actually shows things as they are and models the choices that those of us in the know would make if it were us our the ones we love who were desperately sick in the hospital? An infomercial even? A music video? Doctors don't particularly excel at this sort of thing but perhaps there's someone out there who will take the challenge.

1 comment:

Anonymous said...

if i lose the abilty to drive a car or ride a motorcycle i don't want to live anymore.

the patriotic thing to do is to tap out (die)

yes it is cruel, but someone has to make a point of it. middle class people like me who already pay a ton of money to blue cross get hosed when it comes to nearly anything. FFFUUUUU