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.

Can the Church have a distinctive take on health care insurance reform?

The Supreme Court has finished hearing the case for and against various provisions of the Obama health care plan. All that remains now is to wait for the decision, which will be handed down sometime in June.

There is much to be opposed to in any scheme of health care insurance reform. If we are waiting for a perfect plan before we will declare our support, then we will never support any reform plan. However, I believe the problem of how to justly provide health care to all is an opportunity for the Church to counter the perception of alignment with partisan political agendas and show instead its alignment with an agenda that transcends political or personal preferences.

The doctrine of God’s love, of the self-giving agape which God demonstrates toward us and enables us to show to others, should surely influence our attitude towards health care reform. One expression in Scripture of what our attitude should be is found in Philippians, where Paul writes, “Each of you should look not only to your own interests, but also to the interests of others. Your attitude should be the same as that of Christ Jesus . . .” (Philippians 2:4-5) Much of our resistance to reform comes from considering only our own interests, to the neglect of the interests of others: placing our own desire for limitless choice over the interests of those who have virtually no choices; putting our desire to keep more of our income out of the hands of the tax collector over the interests of those with much more meager incomes who would benefit from the care increased taxes might provide; placing our general principled distrust of government higher in importance than the real good limited government intervention might be able to accomplish in this particular situation. As Christians, we can be concerned not first of all with our own rights and interests, but with those of others, and can willingly insist not on a right to maximum health care but only to a level that is socially equitable and affordable.

As Christians, we have a unique opportunity at this time in history to be a singular witness to Christ by approaching health care and its reform from a theological standpoint rather than the standpoint of a political party agenda or our own rights and interests. By overcoming the tendencies that naturally make us resistant to health care reform, we will show that we are conformed to something other than our culture or our own private interests. By making clear that the followers of Christ are advocates for those unable to afford care, even when it may be disadvantageous to ourselves, we will take our place among the ranks of our Christian forebears who, as they started the first hospitals and hospices in Europe, were at the forefront of health care reform in their day.

French physicians need to be careful what they say

Cultural differences in the balancing of ethical principles can help us see things about how our own culture sets our ethical priorities. Recently the French College of Physicians has decided to hold a hearing on whether Dr. Pierre Dukan, the proponent of a controversial weight loss diet, has violated the country’s medical ethics code by proposing that an anti-obesity option be added to the national baccalaureate exam taken at the end of high school. The option he proposed would be passed by students staying within a recommended weight range (see article in Time).

While there are a number of good arguments for why such a proposal could be harmful by promoting eating disorders and would be unfair to those who were overweight for reasons that they were unable to control and because weight is unrelated to academic performance which the exam is intended to measure, I find it interesting that the French medical community would see this as an ethical violation. Their code of ethics states that “a doctor must be aware of the repercussions his views can have on the public.” This represents a high view of the responsibility a physician has for the welfare of the public in general and not just the physician’s own patients. It suggests a strong sense of what it means for medicine to be a profession that is practiced for the common good. It appears that there are other reasons for the desire to sanction this controversial physician as he is also being accused of practicing medicine like a business in the sales of his diet books.

It is hard for me to imagine the AMA sanctioning a physician in the US for making a proposal that could have harmful effects that were not in the best interest of the public. The principle of personal liberty with its attendant freedom of speech has such a high place in our ethical priorities that it overshadows concern for the common good and professional responsibility. It is also nearly impossible to imagine practicing medicine as a business being seen as a violation of ethics. The business model of medicine as a contract between providers and recipients has so replaced the concept of medicine as a covenant-based profession that is hard to find physicians in the US who do not practice medicine as a business whether they want it to be that way or not.

While the motives of those seeking action against Dr. Dukan may not be entirely pure (few of us have entirely pure motives), the ethical standards being used in this situation make me wonder about the things that have displaced those standards in the medical profession in the US.

CPR: Autonomy vs. nonmaleficence

 

The medical procedure that is one of the most invasive and violent imaginable is also the one medical procedure that does not require the informed consent of the patient.

I am speaking of course of cardiopulmonary resuscitation, or CPR. Anywhere and everywhere in this country, if your heart were to stop or threaten stopping, you would automatically have people pounding on your chest, putting tubes down your throat, and giving you electric shocks. CPR is the default mode; it does not require you to have ever given consent. This is unique in medicine; there is virtually nothing else that a doctor can do to you without your consent.

That no consent is required is often a good and necessary thing; once your heart has stopped is no time to ask if you would like the doctor to do something to help you. But CPR by its brutal nature is often a very injurious thing; and there are many patients for whom CPR is virtually certain to have no beneficial effect whatsoever, but only great harms. Doctors realize that sometimes CPR is not only futile but harmful; but if the doctor were to make a decision in advance not to do CPR on a patient he might be considered not only paternalistic (and paternalism is one of the dirty four-letter-words in modern medical ethics), but potentially Kevorkian-esque, intending the death of the patient. With every other medical decision, from whether or not to prescribe a particular medicine to whether or not to go ahead with surgery, potential benefits are weighed against potential harms and decisions made accordingly. Not so for CPR: unless the patient makes an explicit request to the contrary, CPR will happen, regardless of likely benefit or harm.

In this week’s JAMA is a sensible Viewpoint article by Blinderman et al. entitled “Time to Revise the Approach to Determining Cardiopulmonary Resuscitation Status.” The authors recommend that instead of the current de facto status of CPR, physicians approach CPR in one of three ways: when the relative benefits and harms of CPR are uncertain, present CPR as a “plausible option”; when there is a low likelihood of benefit and a high likelihood of harm from CPR, recommend against CPR; and when a patient’s death is imminent or the patient has no chance of surviving CPR, do not offer CPR as an option.

In many cases this would represent a radical departure from current practice, because in many cases the doctor rather than the patient would be making the decision whether to perform CPR. But it is also a necessary corrective to the painfully inappropriate care that too many receive, as anybody who has ever served on a hospital ethics committee can attest. As the article authors write, “While promotion of patient autonomy is a fundamental responsibility of physicians, protecting the patient from harm becomes increasingly important as the patient becomes more vulnerable. Sometimes, it should be preeminent.”

(JAMA, March 7, 2012 — Vol 307, No. 9, pp. 917-918)

Do doctors make you sick?

It seems the doctor’s role has changed in the past 50 years. At one time, doctors saw sick people and helped to make them well. They still do that, of course, but now their role has expanded: they see well people and help to make them sick.

That, at least, is the contention of Dartmouth professor of medicine H. Gilbert Welch, who wrote in a short, incisive op-ed piece in the New York Times this week about our obsession with early diagnosis as preventive medicine. He writes, “The basic strategy behind early diagnosis is to encourage the well to get examined — to determine if they are not, in fact, sick. But is looking hard for things to be wrong a good way to promote health? The truth is, the fastest way to get heart disease, autism, glaucoma, diabetes, vascular problems, osteoporosis or cancer … is to be screened for it.”

He continues, “Screening the apparently healthy potentially saves a few lives (although the National Cancer Institute couldn’t find any evidence for this in its recent large studies of prostate and ovarian cancer screening). But it definitely drags many others into the system needlessly — into needless appointments, needless tests, needless drugs and needless operations (not to mention all the accompanying needless insurance forms).

“This process doesn’t promote health; it promotes disease. People suffer from more anxiety about their health, from drug side effects, from complications of surgery. A few die. And remember: these people felt fine when they entered the health care system.”

Welch doesn’t think that early diagnosis is always a bad thing, just that it leads in too many cases to overdiagnosis and overtreatment. I think he’s right, and there are several characteristics of our current medical milieu that will tend to make the problem worse. Consider the following:

1. The World Health Organization’s definition of health is “ a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” Under that breathtaking definition, everybody is sick, and every aspect of life comes under the purview of the health care provider. To the degree that we buy into this definition, we feed into the tendency towards “diseasification” of which Welch writes.

2. You ain’t seen nothin’ yet. As genomic sequencing proliferates, we are finding that you don’t have to tunnel very far into one’s DNA to discover that everybody has significant genetic dispositions towards one or more dread diseases. We already see patients worried sick believing that, because they have high cholesterol, they have a disease, when what they really have is a risk factor for a disease. Combine the tendency to equate risk factor with disease, people’s belief that genetic information is somehow more determinative than other types of information, and the messiness of our genes, and even the healthiest among us will have excuse to view themselves as cripples.

There are different kinds of “Preventive medicine.” One is worry-based: I worry about whether I have or might get a disease, I get screened for everything, and I can’t be thankful for the health that I do enjoy because anxiety is my constant companion. The other type involves getting some exercise, eating a reasonable diet, and making time for decent rest. It’s characterized more by thankfulness than worry, and has a better chance of improving our lives: for, as a wise Physician once said, “Can any of you by worrying add a single hour to your life?”