Rationing end-of-life care

The NPR program Intelligence Squared recently held a debate on the proposition to “ration end-of-life care.” Arthur Kellermann and Peter Singer argued for the proposition and
Ken Connor and Sally Pipes argued against the proposition. What became clear very early in the debate was that “should we ration end-of-life care?” was not the right question. All the debaters agreed that in one way or another all health care including end-of-life care is rationed. In the present system on the US care is rationed by some not being uninsured and not able to afford care. There is rationing done by HMOs and other insurance companies as well as governmental agencies. It is sometimes rationed by hospital and ICU beds being full and those already being treated taking precedence over those coming in needing care.

Since a certain degree of rationing of care is inevitable the participants in the debate were actually addressing something different than the original question. What was interesting was that the questions they were addressing were not the same. Those who took the position that we should ration end-of-life care were addressing the question “should a person at the end of life be entitled to any medical treatment that the person requests no matter how very expensive or how little expected benefit there is from the treatment?” They said the answer was no. That seems relatively obvious. There are some treatments that are very expensive and which are likely to be of only marginal benefit which the patient is unable to pay and it does not seem reasonable for society to be required to provide them. If that is what is meant by rationing end-of life care, then the answer is that it should be rationed.

Those who took the position that end-of –life care should not be rationed were actually addressing the question “should the federal government ration end-of-life care in the way that it is anticipated might be done under the provisions of President Obama’s Affordable Care Act?” Their answer to that was no with reasons ranging from an emphasis on the importance of individual decision making about medical treatment, to the wrongness of being denied reasonably effective care by the government due to age or incapacity, and faith in a free market to be able to manage health care costs better than centralized government. They were clearly talking about different things.

It seems clear to me that rationing of end-of-life care and other health care is happening now and is inevitable. We cannot as a society afford to do everything that is possible. The question is “who should make the decisions and how?” Much of high cost ineffective care can be avoided if patients, their families and physicians are well informed and directly address the issues of effectiveness and cost as well as limitations on the extent of desired treatment before situations get out of hand. We need to address our culture’s values and encourage people to think about and discuss end-of-life care before it happens. Physicians play a significant role in this, but the church can play an import role as well by encouraging a Christian understanding of dying well and preparation for death rather than denial of it. When that is not effective we need societal policy that there are some very expensive and ineffective treatments that we as a society will not pay for.

Autonomy run amok

 

A hospitalist asked one of the members of our hospital’s ethics committee for help. “We’re providing more and more futile care for people at the end of their lives,” he said. “How can we stop?”

How, indeed? We find ourselves providing an increasing number of hi-tech, expensive interventions at the end of life that do little more than sustain the body functions of a patient who is dying: treatments that do not treat anything, but merely sustain physical processes, that keep the chest going up and down while organ systems are irreversibly shutting down.

There are many causes of this: one is autonomy. The ethical imperative to honor patients’ autonomy dictates that we seek the patient’s wishes regarding whether or not to continue various interventions. However, typically in these situations, the patient is in no position to declare his or her wishes regarding treatment, so it falls to a family member to make decisions for the patient.  Thus, what often happens is that the physician asks the family member to discontinue the burdensome or disproportionate treatment for the patient. But think about what they are asking: in deference to autonomy, they are asking a family member to make the decision to “pull the plug” on their loved one. Whether or not it’s a medically appropriate thing to do, nobody wants to make the decision that will lead to the death of a loved one. The burden for making such decisions should rest primarily on a primary care physician who knows the patient and has his or her trust (NOT a hospitalist who works shifts and just met the patient last Tuesday).

Autonomy is a good thing and a proper balance to paternalism. But it is not an absolute good: it can lead to physicians abrogating their responsibility to make the hard decisions regarding patient treatment, and placing an impossible burden on family members.

On the other hand is the concern that if physicians make such decisions, they would base them on something other than the best interests of their patient. Regulations that went into effect October 1st, which fine hospitals for Medicare patients who are re-admitted to the hospital within 30 days of discharge, could conceivably lead to decisions to end treatment for patients because they are a financial risk to the hospital rather than for medical reasons.

There are many who agree that the paternalism-autonomy pendulum has swung too far in the direction of autonomy. It is time for physicians to stop ducking distressing decisions by pushing them on to patients and their families. But at the same time, they (we) have to show patients that they are truly committed to their patients’ lives. The willingness of some physicians to actively promote the death of patients (as opposed to removing burdensome technological interventions that prolong the dying process) justifiably gives patients pause when they consider giving them authority to make life-and-death decisions.

When the information from medical tests can be harmful

We live in an age of technological medicine in which we have diagnostic testing available to us that would have seemed unbelievable 50 years ago. Much of that testing is beneficial. Some of the testing has a risk of physical harm and must be used only when justified by the situation. Much of it is very expensive and we need to avoid the cost of unnecessary use. Because of its many benefits we generally consider the information we obtain by doing medical testing to be a positive thing and sometimes assume it is always beneficial. We have a sense that we can never have too much information on which to make decisions about our health.

However, there are times when the information that we get from doing medical tests may be harmful. We need to realize that the potential harm from the information provided by the test is one of the risks of testing that we need to consider before doing a test. This was pointed out recently in a study done by Barbara Bernhardt et. al. about the experiences of women who received abnormal results of prenatal chromosomal microarray testing in an experimental study. The study was recently prepublished online by Genetics in Medicine and referenced in a recent article in U.S. News and World Report. The women agreed to the testing because it was being provided free to patients in a research study, but those who were found to have abnormal results found themselves in a position of having information that the fetus they were carrying had a chromosomal abnormality that was potentially serious, but how much their baby would be affected by that was not known. That left some of them wishing they had not had the testing done. The researchers labeled this situation “toxic knowledge” in which the information from the testing turned out to be seen by the women as more harmful than helpful.

This issue was also a part of the recent decision by the U.S. Preventive Services Task Force to recommend against screening for prostate cancer with PSA testing. Part of the decision was due to a lack of evidence of benefit from PSA testing, but it was significantly influenced by their understanding that the information that a screening test for cancer is abnormal leads to further testing and a confirmation of cancer leads to treatment even if there is no evidence that the treatment is helpful. Therefore the information that a screening test is abnormal can lead to more harm from further testing and the adverse effects of possibly unnecessary treatment than the questionable benefit of the testing.

While the medical tests that are available to us can provide very important information for our health, we need to remember that even the information we obtain from testing can be harmful and make wise decisions about the tests we do as well as the treatments we consider. We most commonly think of informed consent being needed when decisions are made about treatment that entails significant risk, but it can also be needed in the decision to do medical tests.

To cut or not to cut: the circumcision wars

 

The American Academy of Pediatrics recently revised its policy on male infant circumcision. Its former policy, formulated in 1999, held that there were “potential” benefits to circumcision, but not enough to recommend it routinely. The new policy, drafted after a review of the most recent medical studies, states that the potential benefits of circumcision outweigh the potential risks, and that “the procedure’s benefits justify access to this procedure for families who choose it.” The benefits are not strong enough to recommend universal circumcision; the policy states that the decision should be left to parents.

Is this a major ethical issue? There are many groups that ardently believe it is. Anti-circumcision groups (“Intactivists”) have raged against the policy statement. Listening to the argument from both sides is like a primer on ethical theory.

One side appeals primarily to consequentialist or utilitarian arguments: the overall benefits outweigh the overall risks, so it’s ethically permissible. The other side responds to the consequentialist arguments (“You overstated the benefits and understated the risks!”), but uses primarily deontological arguments: to do a medically unnecessary procedure is always wrong. Genital integrity is a human right. From a virtue ethics viewpoint, circumcision proponents have portrayed the decision to circumcise one’s infant son as an example of virtuous parenting, and I can imagine an “intactivist” group asking, “What kind of doctor (or parent) would do that?”

The argument has also been couched in the language of The Four Principles. Some appeal to non-maleficence: to circumcise risks causing harm, so it should not be done. Others appeal to beneficence: circumcision might do some good, so it is justifiable. Others cite autonomy as the most important principle: an infant cannot consent to a circumcision, so it should not be done before adulthood and only if the patient consents. There are even appeals to justice; a recent article in the Archives of Pediatrics and Adolescent Medicine estimated that the avoidable medical costs to the US medical system caused by the decline in circumcision rates could exceed $4.4 billion.

On the surface, the current debate over circumcision is unresolvable, because the argument isn’t about verifiable scientific data; the different sides are speaking different ethical languages. Depending on which ethical calculus one uses, either side could be understood to have the more compelling position. The debate also highlights the glaring weakness of appealing to the Four Principles to resolve ethical differences: there is no inherent hierarchy for which principle is more important, and in the case of infants the usual recourse to “Autonomy trumps everything else” doesn’t work well.

I am personally agnostic on the question. I perform circumcisions, so I suppose that excludes me from the “intactivist” camp. But I do not advocate for or against circumcision; I find that most parents come with an idea of what they want to do, and nothing I say in the informed consent changes that. I think the vehemence of some on either side is misplaced; on a topic of such “un-clarity,” a charitable tone is far more appropriate than incriminating rhetoric.

ICDs: Autonomy vs. Beneficence

Implantable cardioverter-defibrillators (ICDs) are like the automatic external defibrillators (AEDs) that you see everywhere these days. They deliver a shock to a heart in a lethal rhythm in order to try to restore the heart to a normal rhythm. Unlike AEDs, however, ICDs are implanted directly on a patient’s heart, are constantly monitoring it, and automatically deliver life-saving shocks whenever needed. The statistics are quite clear for patients with symptomatic heart failure in certain conditions: ICDs prevent mortality from sudden cardiac death (SCD), and are the sole effective therapy for prevention and treatment of lethal heart rhythms. And in a recent study in the Archives of Internal Medicine, more than half of doctors were so convinced by the statistical mortality benefit of ICDs that they valued the statistics more than patient preferences in making decisions about ICD placement.

On the one hand, this could be a good thing: here are a bunch of doctors who want to do what is best for their patients (the principle of beneficence). And if there were no downsides to ICDs, maybe it would be less problematic. But for many patients, the tradeoff for decreased mortality from SCD is dying instead from progressively increasing symptoms of heart failure. There are perfectly reasonable patients who, given the choice between the increased chance of a sudden death and the increased chance of a protracted death from heart failure, would choose the former (exercising the principle of autonomy); but if physicians are so enchanted by their gizmos and their ability to postpone mortality that they don’t elicit patients’ preferences — or don’t inform them of the options — then a lot of patients may be getting procedures that they would not want if they knew the full risks and benefits.

Medical technique and technology have come in the last century to wield great power. That power must be exercised with the utmost care, and with the utmost respect for persons and their inherent dignity. Our love for gizmos and all things high-tech blinds us to the fact that all techniques and technologies have unintended and unforeseen side effects. And our love for empirical, statistical data blinds us to the fact that statistics tell us exactly nothing about the person in front of us. Careful exercise of medical power requires that medical practitioners treat their patients not as part of a statistical herd but as individuals, eliciting their individual values and preferences. In many instances in modern American medicine, autonomy has been elevated too highly and led to questionable practices or to medical practitioners abdicating their duties as moral decision-makers; but the remedy for runaway autonomy does not lie in a return to a paternalism in which a doctor makes all of the decisions for a passive patient.

The Missing Component

This past weekend at the 2012 CBHD conference, I attended Daniel McConchie’s seminar on the Affordable

Image courtesy of Baptist Medical Dental Fellowship

Care Act and its implications for a physician’s right of conscience.  It would have taken me hours and hours to sort through the complicated legislation that is the ACA, so I’m very grateful to Daniel for providing a clear and concise overview of what the law entails.   With a piece of legislation like the ACA, physicians are to be wary of the interference of government power, but I also reminded our group that insurance companies figured heavily into this law and they in their own way dictate to physicians how they are to practice medicine.  What is almost completely lost in the health care debate is the role of charitable institutions, once the mainstay of American healthcare.  Christians building hospitals and clinics as ministry outreach have a completely different motivation for practicing medicine from that of the government and the insurance companies.  In a charitable endeavor, physicians can feel free to care for the whole person and make interventions that are informed by a Christian ethic.  Even community-based and county hospitals bring a grassroots approach that frees physicians from large-scale plans managed from Washington or a skyscraper.  Since health care is about some of a person’s most intimate affairs, it makes sense to think of health care delivery beginning at the local level rather than with some big, national plan.

 

Framework for balancing risks and benefits

Whenever we make a decision about whether to use a particular medical treatment for a particular patient we decide whether the expected benefit for the patient outweighs the potential risks to the patient from the treatment. Sometimes the benefit is very significant and the risk is small so the decision is easy. Many times the benefit is less certain and the risks are higher and the decision can be very difficult. When the decision is more difficult the values and priorities of the person making the decision are what determine whether the benefit or the risks are more significant. One of the important aspects of respecting the autonomy of patients is to allow the values that impact that balancing of benefit and risk to be the values of the person being treated.

It becomes more complicated when the decision being made is a policy decision that impacts a large number of people. Whose values and priorities do we use to make decisions that affect a whole group of people? That is a concern faced by the FDA as it makes decisions about approving safe and effective medicines for use in the US. The decision to approve a medicine involves weighing the benefits of that medicine against the risk of harm for the medicine. They use the best scientific studies available to assess the benefits and risks of the medicine, but whose values should decide whether the risks are worth the benefits expected? That value decision is ideally made by individual patients, but how do you make it for all the people who might potentially use a particular medicine? Should the physicians, scientists and other experts that the FDA calls upon to make those decisions use their own values?

A recent article in Nature News reports on how the FDA is trying to deal with this difficult issue. They are developing a framework for how to evaluate the balance of risks and benefits for the drugs they are called on to approve. One part of that framework is a planned series of meetings with patients who are representative of those who have 20 different common diseases. They will be looking at how those patients put value on the risks and benefits of potential treatments. That will allow them to be guided by the values that patients have expressed when they evaluate drugs for those diseases.

The FDA is commonly criticized for approving drugs that turn out to have more problems than expected or being too slow at approving needed medicines or sometimes both at the same time. They should be commended for recognizing the important place that patients’ values play in the medical decision making process and trying to incorporate that into their own process for approving new drugs.

The Physician and Chaplain Are Kin

One of our good family friends has been in the hospital the last several weeks, and I’ve gotten to spend a lot of time with her. She is in her eighties and regards me as her “grandson by choice,” and I remember fondly visiting my grandparents in my high school years and listening to her vivid stories and witty humor. She has a firecracker personality and that shines through even though she has a number of medical problems.

One day this week, I went to see her at breakfast-time, and I offered to continue to help feed her eggs and coffee. She declined, saying that she was sleepy. I knew the food would be good for her but felt at that instance I should put down the plate and just sit quietly with her as she drifted off to sleep. The conditioned impulse in me wanted me to jump and run off to “get some work done.” But I knew that what I was doing was a key part of the healing process, an important part of medicine. My presence in the room had an impact on her allowing her to sleep peacefully. And her presence with me allowed me to reflect on things that I’m often too busy to think about it.

Unfortunately, physicians often neglect these very human interactions in their rush to analyze the latest data and strategize about the next procedure. But as leaders of the health care team, I believe it is required for them to be aware of the spiritual health of their patients. Over the course of the morning a half dozen nurses, occupational therapists, and respiratory therapists scurried in and out of the room. All of them were polite and technically adept, but none of them really understood the real situation of an elderly woman over 30 miles away from her home sick in the hospital. Of course, it is the physician who sets the tone for awareness of the patient’s human situation. I was beginning to think that the best thing for this sweet lady was for her to return to the smaller, rural hospital for the sake of her spirit.

Many people write with regret on how the medical profession has become a technical endeavor almost void of spiritual insight. The colleagues of Hippocrates didn’t just draw up some guidelines for medical practice but instead swore an oath before the gods because they knew the gravity of their profession. Likewise, the Christian disposition of medicine in America has historically coupled church charity and chaplaincy with medicine because it takes into account the spiritual well-being of the sick and the injured. I pray the physician and chaplain shake hands and once again embark on this healing endeavor together.

Addendum: Today, I asked for a Gideon Bible to read to my friend. There wasn’t a Bible to be found on the entire floor, even at the other nurse’s station. The nurse said, “This isn’t a hotel.” I replied, “I think you need it more here than at a hotel.” To her credit, she agreed.

Prayerfulness on the Hospital Ward

As I have visited a family friend in the hospital the last two weeks, I have been reminded of the importance of a spirit of prayer when working or visiting at a hospital.  Aside from all our impressive technology and reams of laboratory data, there is a lot that is unknown and beyond our control.

In times past, prayerfulness went hand in hand with medical practice for two reasons.  First, medical cures were much more limited than they are today.  In the days before antibiotics and anesthesia, there was a lot less the physicians of that era could do compared to the doctors of today.  It was only natural to regularly turn to prayer to entreat the One on high for healing.

And, secondly and most notably, in times past hospitals were Christian endeavors.  The chaplain was the daily partner with the physician in caring for the sick.  The very foundations of these hospitals were laid with the knowledge that all healing ultimately comes from the One who is the Great Physician and who left us a record of what a healing ministry looks like.

Ethical questions about health care

A recent article in Time notes that the typical American way to address our economic problems, particularly related to heath care, is evasion and denial. They suggest that this is even truer of the underlying ethical issues regarding health care that need to be addressed by our society. They cite such questions as “When should aggressive treatment be limited for someone who is terminally ill?” “Does everyone deserve the same care?” “Is medical progress always a good thing?” “How much happiness do people deserve?” that get answered by default if we don’t address them ahead of time.

It is clear that what they are saying is right. If we don’t address these ethical questions as a society we will blindly proceed with our dysfunctional system of care and economic forces will prevail.

The question is what to do about it. How do we get our society to think about these things and come to a consensus for the good of all? Sometimes government can help, many times in response to something. After Tuskegee we got the Belmont report. After court cases about stopping life-sustaining care there was a presidential commission to address that. When President Bush had to address human embryonic stem cell research we got the President’s Council on Bioethics that tried to be a forum for national discussion of broad underlying issues in bioethics. Some times government focuses more on specific policy issues as is the agenda for the current Presidential Commission for the Study of Bioethical Issues.

However, what government does is not enough. Organizations like CBHD can play a major role in helping to define the issues and engaging people in the conversation. Those of us involved in the church and in education can also play a significant role. Having discussions in our churches can help people engage these questions in a Christian context. Helping students to think about these issues can prepare future leaders to be ready to lead the discussion in the future. Each one of us has a part we can play in helping our society think about these issues so that we are not led blindly into the future by economic forces alone.