COVID-19 and the Vulnerable

April 2020 is over and not a moment too soon.  As we enter May, it is reported that over 60,000 people in America have died of COVID-19.  There is a measure of relief that some of the most dire predictions of ICU hospitalizations and deaths have not materialized. As many have suggested, a good dose of humility is needed when it comes to predictive models.

Since I last blogged in early March, I have read with great interest some of the many writings about the intersection of COVID-19 and bioethics.  Early on, some wondered how big a threat COVID-19 actually was to people who lived outside of Asia.  That quickly changed into an important discussion about how we should triage patients in case there was not enough ventilators for all who needed one. (See, for example, the discussion at www.cbhd.org).  Others have expressed concerns about how the use of our cell phones as tracking devices to trace COVID-19’s spread might encroach upon our privacy rights.  Still others have noted the racial disparities that have arisen during the pandemic, leading Dr Clyde Yancy of Northwestern University to conclude, “A 6-fold increase in the rate of death for African Americans due to a now ubiquitous virus should be deemed unconscionable.  This is a moment of ethical reckoning.” These and many issues are worth detailed consideration. 

Currently, some are focused on the ethics of reopening the economy. See, for example, the paper recently posted by The Hastings Center on this topic. The issue is not whether businesses should open, but how and when they should.  Of course, as you might suspect, there are multiple factors to consider, including the possible return of COVID-19 if social distancing rules are not observed.  But others argue that extensive damage has already been done to the economy and that it is worth the risk to reopen things again. 

In the midst of all this, it is important to consider the toll that this has taken upon those who are among the vulnerable.  Recently, in its series “Voices from the Pandemic,” The Washington Post published the comments of Gloria Jackson, a 75-year old resident of Minnesota. Her statement is heart-wrenching in many ways, because she gives a voice to some of the unspoken fears of many elderly citizens. These words in particular stood out to me:  

“I spent my career working for the federal government at Veterans Affairs. I raised my kids by myself . . . I pay taxes and fly a flag outside my house because I’m a patriot, no matter how far America falls. But now in the eyes of some people, all I am to this country is a liability? I’m expendable? I’m holding us back?”

I appreciate Ms. Jackson’s forthrightness.  Bioethics needs to speak directly to these fears in order to remind her (and others like her) that she is a valued member of society. Even if her health should fail, she will be treated with compassion.  No one is expendable.

COVID-19 has shone a bright light on the needs of the most vulnerable of our society. We overlook them at our peril.

Who gets the Ventilator?

Anyone watching the news coverage of the COVID-19 pandemic here in the US during the past week could not have avoided considering this generic question. Some are living in regions where the question is much more personalized – “If there really are not enough to go around, will I get a ventilator if I need one?” Ethically allocating a scarce resource such as a ventilator during a global pandemic caused by a virus that can strike anyone and potentially cause death by respiratory failure is clearly one of the great bioethical challenges facing us. What follows is a brief, blog length, discussion of some of the pertinent concerns followed by links to more detailed exploration, written by bioethicists who have considered these issues in greater detail.

In the last blog entry, Joy Riley touched on the issue of one individual refusing a ventilator for the expressed benefit of others. While the whole story was more complex, the facts do remind us that treatment (and therefore utilization of scarce resources) should start by determining what the patient actually wants and whether the resource in question can have any meaningful benefit in that patient’s care. Jon Holmund began the discussion of what processes and protocols may ethically change during the pandemic with resource scarcity and what others should remain in force.

My last entry touched on the four Principles of Bioethics (Autonomy, Justice, Beneficence and non-Maleficence) as a simple outline. The Principles are often referenced in guiding the one-to-one ethical relationship between the doctor and patient. Limited resource allocation affecting a population as a whole would seem to demand a different or additional ethical framework. Utilitarianism is often used in this context since it is an ethical system that desires to maximize some good (happiness, pleasure, health), theoretically scalable by maximizing that good for a whole population. Some problems with utilitarianism are determining exactly what that good should be as a population and agreeing on exactly how to measure it.

In the issue of the COVID-19 pandemic, one utility is maximizing access to ventilators or, perhaps more broadly, maximizing the number of lives saved. This sounds promising. But what happens when two people (or more) need, and want, the same ventilator at the same time. How do you determine who gets the ventilator? Utilitarianism does not necessarily answer this question or the many following: Is it “first come-first served”? Do we draw straws (a lottery)? Is it the person who can “pay the highest price”? The person who “needs it immediately”? The person who only needs it for a short time (so that the ventilator can be used again to help someone else)? Does the ventilator go to the person who is responsible for saving other lives (such as a nurse, food supplier, ventilator maker – and if so, how does one prioritize among these)? Assuming these decisions can initially be made, can we change that decision later? For instance, if someone has been using the ventilator for a (long) while, is it ever ethical to remove that person so that someone else “has a chance”? If not, is it ethical to somehow prevent them from being selected for ventilator access in the first place?

None of the preceding questions are easily answered, particularly in the heat of the moment, and are therefore best answered, if they can be, at the outset. Once determined, they should be made public as transparent guidelines. If agreeable to all involved, then applicable equally to all involved, and implemented fairly as specifically outlined. No guidelines will be exhaustively perfect in their ability to stratify and prioritize access to save the lives of all involved – the best that may be accomplished is to save the greatest number of lives until the scarcity of ventilators is resolved or the pandemic has run its course.

Agreeing on an ethically acceptable method to allocate scarce resources in a theoretical pandemic is very difficult, even in the abstract; actually implementing such a plan during the emergency of the real pandemic warrants nothing short of divine guidance.

For those interested in reading further and/or deeper, the Center for Bioethics and Human Dignity has an excellent resource page with multiple links to other references. I found Dr. John Kilner’s “Criteria for the Allocation of Limited Healthcare Resources” very helpful.

More—with trepidation—on COVID

Let us stipulate at the outset: first, that so much—far too much? –is being written on the COVID-19 outbreak, and wisdom is a precious commodity; second, that although your correspondent is an MD, he is as bewildered as anyone by the storm of reports, claims, data, projections, arguments; and third, that whatever public comity may appear to pertain now, in due time we likely will be at one another’s throats with blame about who should have been better prepared or done what when, and there will be plenty of blame to go around.  Our leaders, national and regional, are especially to blame, but the evidence abounds that too many of us took this too lightly throughout January and February.

This being a bioethics blog, however, a few comments about some ethical issues in an outbreak, from a 2018 paper on the subject.  The paper in question raised three major topics: ethics of treatment research, triage, and the duty (by doctors and other health professionals) to provide care.

The last point first: it is well established that the covenantal duty of doctors in particular is a willingness to efface self-interest for the interests of the patient.  There is no dispute that this duty is being followed faithfully by the doctors, nurses, and others who are caring for people sick from COVID-19.  But a related duty of society is to do what it can to limit the risk to the caregivers themselves.  This is clearly pressured by, for example, the limitation on personal protective equipment (PPE) supplies.  We owe it to the medical community to provide them with what they need.

Next, triage:  try as we might, and fail as we might (and always seem to) to prepare in advance for a possible outbreak, surprise never fails to assert itself, and shortages of things that really matter loom.  At this writing, I have no idea whether New York City’s capacity to care for the sick is destined to, or is already, hopelessly overrun “under any scenario,” as Gov. Cuomo said this morning, or whether we can take any comfort in the assertion this evening by Dr. Birx that “there are still ICU beds and ventilators” in New York.  In early March, an infamous discussion at the American Hospital Association projected as many as 1.9 million people needing ICU care nationwide, and about half of those needing ventilator care, and it is further widely said that the typical ICU stay, even for someone relatively young, is 2-3 weeks.  Numbers far fewer than that would outstrip our national capacity, it appears.   Then again, the real shortage may not be ventilators, but the doctors to manage them.

These concerns also arose in the first Ebola outbreak a few years ago, and much-discussed principles of allocating scarce resources apply.  First and foremost is to try to alleviate the shortage through the best possible resource management.  Failing that, if hard choices must be made, then the likelihood of achieving clinical success is a top criterion.  But that requires clinical judgment that may be uncertain, requiring a lottery system, or a registry (as is done for organ transplantation).  Perhaps most controversial is to make an attempt to prefer treating people who are judged, if treatment succeeds, to have more life to live or more potential lifetime contribution to society to offer.  In that case, who decides, and how one decides, become very dubious judgments to make.

In the moment, there may not be enough critical care resources to go around, and doctors have to make a hard choice to treat one person but not another.  Physicians in Italy are reported to have faced exactly this choice this month.  Another principle, easy to say but hard to follow (talk is cheap!), is that triage “should not be a bedside decision,” that is, the treating doctor should not be forced to make a choice, but a previously-settled decision process should be applied.  I do not know whether that was or is possible in Italy, or in New York, or elsewhere in the U.S. or the world during this outbreak.

If we indeed are committed to care for and conserve our most precious care resource, our doctors, then that, in addition to limits on the number of available beds, might be adduced in favor of a so-called “universal” or “unilateral” decision that resuscitation (CPR) of some patients—which will increase the risk of the doctors and nurses getting infected—simply will not be attempted if their heart stops, regardless of whether the patient desires the attempt.  I know of no evidence that this is being done anywhere, but it is the subject of some speculation in the press.  The proper process is for a careful end-of-life conversation to happen between doctor and patient, before being confronted with the need, so that the patient’s wishes and the doctor’s professional recommendation can be considered.  But if that did not happen for people seriously ill with COVID-19, it may be too late when the illness strikes.  Those of us “of a certain age” are wise to consider this question in advance—viral outbreak or no.

Finally, the ethics of experimental treatment during a disease outbreak are governed by a well-defined regime of human subject research.  The key principles follow the Belmont principles reviewed by Mark McQuain on this blog on March 17, and include that risks to subjects must be limited as much as possible; that the necessary research risks not be excessive compared to the potential benefit to the subject at hand or society at large; that informed consent be properly obtained and documented; and that vulnerable people or those less advantaged not be denied access to potentially promising treatment nor be disproportionately placed at risk or have their vulnerabilities taken advantage of.

In the case of this present outbreak, research ethics also require that experimental treatments be properly studied in adequately designed clinical trials.  Implications, IMO, include that people be randomly assigned to treatment alternatives.   It is true that “off-label” use of drugs that are available for other uses is legal when prescribed by a licensed physician, and such off-label use is not on its face evidence of malpractice.  However, society stands to benefit by collection of data about the COVID-19 disease and outcomes of treatment, and so even off-label use should be done in a clinical trial, not in a “right to try” approach.  Because COVID-19 can be so severe, and the need for treatment is so great, I am inclined to think that random assignment to a placebo is a suspect requirement, I must admit that the need to learn more about the natural course of COVID-19 infection probably requires a placebo group in most, if not every, clinical trial.  There is not enough prior knowledge to rely on comparing a past group with a current, treated group, to conclude whether a new treatment works.  But requiring a placebo further requires that the trial get done fast and carefully, so results are as clear as possible, and made pubic immediately.  We should have no doubt at all that everyone doing the trials wants that.

I note that the public registry of clinical trials includes several in the U.S., including a national, 3000-person study of whether hydroxychloroquine may prevent disease in people exposed to others with COVID-19 disease.

Withdrawing life-sustaining treatment from an infant and rights of conscience

The is currently a legal (and ethical) debate in Texas over the treatment of a one-year-old infant, Tinslee Lewis (see articles in the Hastings Center Bioethics Forum and the Fort Worth Star-Telegram). Tinslee was born prematurely with a congenital heart defect and subsequent severe lung disease. She has had multiple surgeries and is on a ventilator in ICU. In October Cook Children’s Hospital, physicians, and ethics committee made a decision to remove her from the ventilator in spite of her mother’s desire to have the ventilator continued. This was done in accord with Texas law which allows a hospital to stop life-sustaining treatment of a child against the wishes of the child’s parents if the treatment is futile. Tinslee’s mother went to court and obtained an injunction to keep the hospital from withdrawing the treatment. In January the court decided in favor of the hospital that the treatment could be withdrawn, but that decision was appealed and is now being heard in a Court of Appeals. There are two issues at stake. One is who should be the final decision-making authority for Tinslee. The other is whether the current Texas law is constitutional.

The hospital says that treating Tinslee with the ventilator is causing suffering without medical benefit and that her physicians have a right to decline to participate in such treatment. They support the current Texas law which would allow the hospital to stop the treatment. Tinslee’s mother says that her daughter is not suffering and has actually recently improved. Her lawyers say that the current Texas law is unconstitutional. The two sides have been joined by interesting supporters. The hospital has been joined by the Texas Catholic Conference of Bishops and several other groups including a pro-life group and a disability rights group who argue that the current law provides protection for patients and protects rights of conscience for physicians. Tinslee’s mother has been joined by the Texas Solicitor General and the Texas Attorney General who are seeking to overturn the current Texas law.

The basic ethical question is whether rights of conscience apply in this situation. The physicians and hospital say that they believe that continuing the ventilator is wrong because it is causing suffering without medical benefit and they should be able to refuse to provide a treatment they believe to be wrong because of a right of conscience.

I think that rights of conscience for physicians and other medical providers are very important. However, there is a significant moral difference between the usual understanding of rights of conscience in which physicians refuse to engage in actions they believe to be inherently morally wrong. A physician who refuses to be involved in abortion or euthanasia does so because he or she believes that such actions are inherently wrong. The physicians in this case do not believe that treating an infant with a ventilator is an inherently wrong action. It is quite likely that these same physicians recommended the use of the ventilator and encouraged Tinslee’s mother to see this a treatment that was good for Tinslee and which they could make as painless and comfortable for her as possible. The decision to stop the treatment which they once recommended is a judgment based on their values that the burden of the treatment has become more than the benefit of the treatment. That is significantly different from a refusal to participate in a treatment which the physician believes to be inherently wrong. The burden of being on the ventilator is no different than it was when it was started. The ventilator continues to be effective in performing its function of supporting respiration. What has changed in the physicians’ minds is whether the benefit of extending this child’s life is worthwhile. That is a decision that should be made based on the values of her mother, not the values of the physicians.

Autonomy of Access vs. Autonomy of Decision Making in Opioid Addiction

A recent Perspective in The NEJM by Dr. Amy Caruso Brown discussed the ethics consultation involved in treating addiction as a terminal disease. Since the article is behind a subscription firewall, I will briefly summarize the case and some of the ethical problems outlined by Dr. Brown. The focus of this blog is to ask the limited question as to whether or not there is sufficient patient autonomy to make decisions in an addiction situation described as terminal if, as Dr. Brown claims, society has failed to provide sufficient access to and services for patients with chronic addiction and/or mental health problems associated with similar levels of addiction.

Dr. Brown’s patient, Ms. A, was an unemployed, homeless woman who had a history of chronic opioid use/abuse and had failed multiple impatient rehabilitation, methadone maintenance and buprenorphine treatment programs. She was hospitalized for septic shock secondary to endocarditis, which had damaged two heart valves to such a degree that she was not considered healthy enough to survive surgery to correct the problem. Her only relative, a brother, who had recently finally cut ties with his sister to protect exposing his children to her illness and habits, agreed to a do-not-resuscitate order. To the surprise of her treating staff, her condition stabilized to the point where the cardiothoracic surgeon agreed to operate. She declined, wanting to be discharged so she could seek morphine to self-treat the intractable chest pain. She fired her attending physician as he made the ethics consultation referral questioning her decision-making capacity.

Dr. Brown nicely outlines the particular issues of legal capacity requirements required in New York and the limited capacity that surrogates have if they we not previously designated as such. Dr. Brown also discussed whether or not Ms. A met the criteria for terminal illness, specifically whether or not ongoing chronic opioid addiction, in the face of now severe cardiac compromise, would be expected to cause death within 6 months. Dr. Brown maintained that Ms. A was lucid and capable to make informed decisions, which were that she “simply wanted to go home, or to a hospice facility, and die peacefully.” Dr. Brown did not find her depressed or emotionally compromised, though quoted her as saying “I’m done. I’m ready to be done. I’ve fought long enough” and described her as “exhausted and grieving”. Dr. Brown believed Ms. A’s “decisional capacity was clear.”

Finally, Dr. Brown argued that society had failed Ms. A by not facilitating access to a treatment program that “included medication for opioid use disorder (OUD) – preferably initiated in an inpatient setting and coupled with ongoing trauma-informed mental health care and various social supports – [in the absence of which Ms. A] would almost certainly have a relapse”, further making it likely she would die within 6 months. Though the article noted Ms. A had previously failed inpatient rehabilitation, methadone maintenance and buprenorphine, it was not stated how coordinated or integrated the previous programs were. Was the proposed program new or simply a second (or third) chance through a similar program? Thankfully, Ms. A decided to accept palliative terminal care, which resolved her homeless situation, as it would be provided at an inpatient facility.

What if Ms. A had declined inpatient palliative care? Dr. Brown made a strong case that Ms. A’s social situation (poor, homelessness, mental health history of abuse and chronic opioid dependence/abuse) limited access to an appropriate treatment program for her problems, likely the only one with any expectation of success, however limited. Even if we grant that Ms. A was indeed terminal and had clear decision-making ability not compromised by depression, ongoing opioid dependence and other mental health factors, did her social situation really allow her to be autonomous in decision making? Said differently, how can we consider her autonomous for decision-making when she apparently lacks autonomy for access to her treatment? Further, how much support can an individual demand or expect from society and still be considered autonomous? I have touched on a similar issue in this blog previously with regard to serial pregnancy in opioid addicted women, asking when should the risks to the children (and social and financial burden to society) supersede the mother’s autonomy for having more children?

We need to improve access to treatment and support for mental health in general and opioid treatment in particular. This will likely include further discussion regarding the level of autonomy of those needing that treatment and support.

Dementia and the value of human life

Recent public reporting of some cases in Canada of people with dementia whose lives have been ended by euthanasia have caused me to think about the value of human life in those who have dementia. Canadian law requires the person whose life is ended by euthanasia to have mental capacity for informed consent, intolerable suffering, and a foreseeable death. It was initially thought that patients with dementia would not be candidates for euthanasia under the Canadian law because of the requirement for mental capacity, but now there euthanasia providers who have concluded that there are some patients with dementia who have sufficient symptoms from their dementia to qualify as having intolerable suffering but still have adequate decision-making capacity. The discussion there has focused on whether person who is at the stage of dementia that causes intolerable suffering can still have adequate mental capacity. I have a different concern.

When we try to define intolerable suffering in the context of euthanasia it appears to mean that the person who is requesting euthanasia has decided that the effects of an illness have reached the point that the illness has made his or her life not worth living. When we talk about intolerable suffering and euthanasia the first image that comes to mind is a person with excruciating and untreatable pain, but it turns out that pain is not the most common reason for people to request euthanasia. It is more commonly requested due to a loss of control and increased dependency. This is not surprising since we live in a society that places high value on independence and autonomy. However, is independence really what makes human life worth living or is that a widely believed but untrue fiction in our society? Aren’t we all dependent? As children we are dependent upon our parents. As we go through adulthood, we are dependent on spouses and friends. As we age, we become dependent on our children and neighbors. Loss of independence makes us more clearly human, not less human. The impairments of old age, whether they be physical or mental, make it harder for us to deny our dependency, but loss of control (which is what loss of independence is) and increased dependency should not be seen as something that makes life not worth living. It draws us deeper into the relationships that are an essential part of being human.

Living with dementia is difficult for the person with dementia and for those who love and care for persons with dementia, but it does not make the life of a person who has dementia not worth living. The person with dementia is still a person who has relationships that are important, even when the one with dementia can no longer remember who those people are, because the person with this dementia is still the same person. He or she is still the mother or father, sister or brother, or friend. He or she is still a uniquely created child of God. Our response to those who feel that life is no longer worth living because of the loss of cognitive abilities and independence should be to help them understand that their lives are worth living because they are valuable to us.

Rights of conscience and the distinction between needed and desired treatment

Rights of conscience, the moral concept that physicians or other medical providers should be able to choose not to provide or participate in medical treatments which they believe to be morally wrong, continues to be widely debated in our society. A recent article in Vox titled “He needed a gender-affirming procedure. The hospital said no.” Expresses some things that I think are misunderstandings of what this debate is about.

Although it mentions other faith-based institutions, the article is primarily about the types of procedures which Roman Catholic hospitals in the United States do not provide under the Ethical and Religious Directives for Catholic Health Care Services. Throughout the article it is stated that Roman Catholic hospitals have refused needed care to persons seeking care in those hospitals. It also raises the concern that people may die because they are not provided necessary emergency care and care from another hospital willing to provide the care may be too far away. My main concern with this article is that there appears to be a misunderstanding about the distinction between needed and desired treatment. Among the things listed as needed care are “fertility treatment, gender-affirming care, or tubal ligations.” The article begins with the case in which a Roman Catholic hospital would not provide an elective hysterectomy to a biologically female person who identified as being male. The hospital’s reason for not providing this elective surgery was not because it was desired as a part of the person’s gender transition. They chose not to provide the surgery because of their belief that removing a healthy uterus impairs fertility in a way that should not be done.

There is a difference between desired elective treatments that people may choose to do even though there is no medical reason why they need to be done and treatment that is either life-saving or needed for other medical reasons. Such things as fertility treatments, gender affirming surgeries, tubal ligations, and abortions are elective treatments that an individual may choose to do but are not medically necessary. There is an appropriate difference between the obligation of a physician or hospital to provide medically necessary and life-saving care and the presumed obligation to provide elective medical treatments that are desired but not medically necessary.

I am not Roman Catholic, but I practiced in a Roman Catholic hospital for about 30 years. I served on the ethics committee at that hospital as well. I became very familiar with the ethical and religious directives and the type of things they direct Catholic hospitals not to do. These things are elective treatments or procedures that a person may desire, but which are not medically necessary. I also became familiar with the important role that Roman Catholic hospitals play in providing care for the poor and marginalized, many times providing care for people that other hospitals and physicians would not. Those who think that our society would be better without Roman Catholic and other faith-based hospitals are quite mistaken. If those hospitals are forced out of our society by those who would require them to do anything that anyone requests even when they believe that those things are wrong, the poor and marginalized in our society will suffer greatly.

Different answers to “Why?”

Sometimes when we ask “Why” we are really asking the mechanical or causation question: “How did something come to be?” In a billiards game, one might ask: “Why did the 8 ball go into the side pocket?” A valid answer might be: “It was struck by the 3 ball.” A reasonable follow-up question might be: “Why did the 3 ball strike the 8 ball?” Answer: “It was struck by the cue ball after a billiards player struck the cue ball with her stick.” These are correct mechanical explanations as to how the 8 ball came to go into the side pocket.

Sometimes when we ask “Why?” we are really asking: “For what purpose did something come to be?” In the previous billiards game, the answer to the question: “Why did the 8 ball go into the side pocket?” might be: “The player struck the cue ball which struck 3 ball which struck the 8 ball which went into to the side pocket so she could win the billiards game.” There was a purpose behind or beyond the physical or mechanistic description of the 8 ball falling into the side pocket.

Two opinion pieces asking “Why?” from medical and bioethical aspects were published within a week of one another and provide similar examples. The first was a NEJM Perspective by Anthony Breu entitled “Why is a Cow? Curiosity, Tweetorials, and the Return to Why” (subscription required). The second was by Stephen Phillips in this blog entitled “Why do we do this?”

In the first article, Dr. Breu begins with the classic infinite regression example of his 4-year old daughter asking “Why” to every response he provides to her previous “Why” question.

Daughter: “Why was [so-and-so] sleeping?”
Dr. Breu: “Because it was nighttime.”
Daughter: Why was it nighttime?”
Dr. Breu: “Because the earth rotates.”
Daughter: “Why does the earth rotate?”

Dr. Breu paused at this point because he did not immediately know why the earth rotated. He jokingly recalled that his own father terminated these inquisitions with: “Why is a cow?”, which Dr. Breu quickly learned meant the “Why Game” was over. The rest (and real emphasis) of the article discussed the benefits of encouraging medical curiosity in his students and the particular benefits of “Tweetorials”, Twitter posts that answer in-depth medical explanations of pathology. “Why does an acute hemorrhage cause anemia?” His Tweetorial provided a mechanistic answer to the question of why (or how) does anemia result from an acute hemorrhage.

Dr. Breu closes his article with the following answer to his daughter’s last question:

…the Earth rotates because of the angular momentum that resulted from asymmetrical gravitational accretion after the Big Bang. And if my daughter asks me “Why was there a Big Bang?,” I’ll be forced to reply, “Why is a cow?”

In the second article, Dr. Phillips answers the question: “Why do we do this?” by succinctly describing the purpose for which we Trinity Bioethics bloggers write the bioethics articles that we write. We believe there is purpose behind or beyond the human biology that we study determined by a loving God in whose image we are made. As such, our bioethical inquiries seek to understand whether the human purpose of a particular medical technology or procedure is complementary or contrary to God’s purpose. Why? As Dr. Phillips explained, because God loves us and has asked us to love our neighbor.

Maybe that is an answer to “Why was there a Big Bang?” (and “Why is a cow?”)

Parental responsibility in childhood immunizations

Last week I wrote about the issue of parental responsibility and medical decision-making for children. We have good reasons for having parents be the primary decision makers for children who are not capable of making their own medical decisions. However, as I discussed in the last post, there are some situations in which parents make decisions that are not in the best interest of their child. When those decisions reach the point at which the child’s life is in danger, society clearly has a moral obligation to intervene to save the life of the child.

Parental refusal of recommended immunizations for their children raises similar issues but is more complex. We can clearly demonstrate that it is in a child’s best interest to receive at least most of the commonly recommended immunizations for children. Those immunizations help to prevent a child being affected by diseases that can be serious and have a very low risk for serious adverse effects. However, the chance of an individual child being affected by many of these diseases is relatively small and the situation is quite different from a child whose life is in immediate danger due to a parental refusal of treatment. Since the risk to an individual child is relatively small and there is some possible risk to the child from receiving the immunization, it is not clear that a parent who refuses immunizations for a child is being negligent in the same way as a parent who refuses treatment for a life-threatening illness. It can be argued that the best way to deal with this type of situation is education. Many times, parents refuse immunizations for their children because of misconceptions about the risks and a lack of understanding of the benefits of doing the immunizations. It can be difficult to counter widespread misconceptions, but physicians have the responsibility of trying to do that the best that we can. However, this is not the only issue involved in determining whether society has an obligation to intervene and mandate childhood immunizations when parents refuse.

Immunizations are unique in the way that they work. They help protect the individual who is immunized, but they also help protect the community as a whole when we can achieve sufficient levels of immunity to halt the spread of an infectious disease within the community. This is sometimes called herd immunity. We have an excellent example of how this works with the current measles outbreak in the United States. Measles happens to be one of the most easily transmittable infectious diseases that we know of. It also can be deadly in a small percentage of the people who acquire the disease. It is also primarily a disease of children and is transmitted by children. When about 97% of children have been immunized in a community the disease will not be transmitted through that community and those who have not been immunized or cannot be immunized are protected from acquiring the disease. This level of immunity was accomplished in the United States about 20 years ago and for some time the only cases of measles that were seen in the United States were cases that originated elsewhere. However, because of parents refusing to have their children immunized for measles in significant numbers in some parts of the country, herd immunity is no longer present and we are having outbreaks of measles this year that are more than we have seen in 20 years.

That raises a different question. Should we mandate immunization of children for diseases such as measles and override parental decision-making not solely for the benefit of the children whose parents refuse to have them immunized but for the common good of the community? There are some children and other individuals who cannot be immunized or for whom immunizations would not be effective who are put at increased risk when herd immunity is not achieved in the community. This makes the decision about whether to immunize a child not just a decision about what is best for that child but also a decision about what is best for the community. For Christian parent it makes the decision about whether to immunize a child a decision about love of neighbor. Immunizing one’s own child helps to protect the child, but it also helps to protect the most vulnerable in the community. If we truly love our neighbor, we should do that even if there is a small risk to our own child. The final question is whether we as a society should require children to be immunized for these diseases when a parent is not willing to authorize it out of either concern for the best interest of the child or concern for those who are vulnerable in the community.

Parental responsibility in medical decisions for children

The 2 posts on this blog this week by Neil Skjoldal and Mark McQuain raise issues related to parental decision-making for the medical treatment of their children. Neil raised this issue related to parental refusal of life-saving treatment for acute leukemia and Mark raised it related to parental decisions not to have their children immunized for measles. There are some similarities in these situations and some differences. An obvious similarity is that in both of these situations parents are making a decision to refuse treatment for their children that is the recommended standard of care. Both situations raise issues about who should make decisions about the medical care that children receive and how those decisions should be made.

One thing we should be clear about is that this is not a conflict between the principle of respect for autonomy and the principle of beneficence. Respect for autonomy says that a person should be able to make decisions about what happens to his or her own body. It says that it shows disrespect to an individual as a person to insist a person receive recommended medical care when that person has the capability of making his or her own decisions and does not consent to the recommended care. This principle does not apply to decisions about the medical care of young children. Young children are not capable of making decisions about their own care and the parents are not the ones receiving medical treatment, so respect for autonomy does not apply to these situations.

What is involved is our understanding of parental responsibility for making medical decisions for their children. Because young children do not have the ability to make their own medical decisions, someone needs to serve as a decision-maker for them. We generally understand that parents ought to be the ones making those decisions. We have good reasons for that. Decisions about the medical care of young children should be made based on what is in the best interest of those children. God has created us as human beings to be dependent during the early part of our lives. He has put us in families with parents who have the responsibility for providing for the needs of their dependent children. Parents should love their children unconditionally as a precious gift and make decisions for their children based on what is best for each child. This usually makes parents the people who care the most about doing what is best for a child and makes them the best medical decision makers for their child.

However, sometimes parents do not fulfill their parental responsibilities as well as they should. None of us are perfect, but there are times when it is clear that the decision being made by a parent is not what is best for a child. When the potential consequences for the child are serious enough it can become the responsibility of the rest of us to intervene for the benefit of the child. We should not violate parental responsibility lightly, and it needs to be done in a controlled and orderly way, but when the child’s life is in danger, we have a responsibility as a society to intervene to protect a child. We should do this in any type of severe neglect or abuse.  We should do it when parents refuse medical treatment for a child who is likely to die if without treatment and the treatment has a good chance of saving the child’s life.

That appears to be the case in the situation in Neil’s post. The concern about parents refusing immunizations for their children has some similarities, but is more complex. It will take another post to address that.