MYTH: Your health is yours and you can decide for yourself.
Imagine a new medical discovery.
The media will tell you that it “works”, which generally means that:
based on at least one research paper (rarely more),
in a carefully selected group of patients,
in carefully selected circumstances,
it confers a carefully specified set of benefits,
often enough to outweigh whatever harms the researchers chose to measure.
From a utilitarian perspective, for that group of patients, in those circumstances, assuming we can somehow agree on the relative weights of the benefits and the harms, the innovation improves the “greater good”. However, you won’t hear about all those provisos. You’ll only hear that it works!
These days, that’s often where the analysis and reporting stops. We’re told that “the science is settled”, as if we have all the information we’ll ever need. We’re told that it should be publicly funded, no matter the cost. We’re told that everyone should be able to take advantage of it, even if they aren’t exactly like those carefully selected patients in the research study, no matter their personal values and beliefs. Panels of experts will incorporate the new discovery into guidelines and standards of care, even when they don’t know all the downsides, and even though others rightfully remain skeptical. Eventually, professional Colleges will tell doctors and others that they must include the newly available treatment option in their conversations with patients, even if providing such information conflicts with the physician’s conscience (or interpretation of the evidence).
We profess to practice shared decision making, in which patients work with their physicians to make the choice that’s right for them in the moment. However, paternalism is still disturbingly common. Behind the scenes, well-intentioned forces are at work doing everything possible to ensure that you, as a patient, make the “right” choices, through an oxymoronic concept described as “libertarian paternalism”.
“The libertarian paternalist holds that it is possible and desirable for both public and private institutions to influence people’s choices so as to increase their welfare while at the same time respecting their freedom of choice. An institution endorsing libertarian paternalism will thus steer or move people to choose in ways that will increase their welfare without blocking or fencing off choices.”
To nudge or not to nudge: cancer screening programmes and the limits of libertarian paternalism, Ploug et al, 2012
You might note the inherent assumption that “public and private institutions” know what’s best, leaving you free to choose only that which they consider to be good for you. As Henry Ford once said, “any customer can have a car painted any color that he wants so long as it is black”. Our health care system may not be limiting your options to quite that extent, but it’s getting there — the “steering” is getting more aggressive, and the invisible fences are being built.
The times have changed!
Back in the day when most, if not all, medical interventions benefitted the individual patient, and the harms affected the same individual, the utilitarian approach worked. As an autonomous individual, deciding whether or not I would have a hip replacement for my osteoarthritic hip, I would balance off the pain, inconvenience, and cost of the surgery with the alternative (ongoing osteoarthritis pain, daily medications, limitations on my activities, etc.). My surgeon could advise me about recovery times, success rates, complications, etc. In paying for the surgery, I was purchasing services, and, assuming the services were available, the decision was personal — based on what was most important to me, would I benefit enough to justify the cost and inconvenience?
Once we moved to a system in which the public pays for my surgery, my hip replacement became a public good, subject to the wider debate about how many hips should be replaced, at which hospitals, in which patients, by what method, using which hip implants, based on what evidence, etc. Those decisions are public, and the cost/benefit analysis is more complicated. When resources are constrained (and they almost always are), which patients benefit the most? As a society, how do we get the most bang for our buck? How much choice should individuals have? Should they choose their surgeon, the timing of their surgery, and the type of prosthesis?
Either way, on the face of it, it’s a utilitarian decision, requiring that the benefits exceed the harms. The difference lies in whether we assess the benefit/harm balance for the individual or for the group. What’s best for the group may not be best for every person in the group, and vice versa. The thinking can go either way. It can be used to justify doing things to individuals for the greater good (as in mandatory vaccination programs), or it can be used to refuse or limit services to people who need them (as in the rationing of hip replacements). Both examples limit patient autonomy.
In short, the science might tell us what we CAN do (assuming we have ALL the facts), but it doesn’t tell us what we SHOULD do, and what we SHOULD do depends on whether we are making individual or group decisions.
How do we decide what we SHOULD do?
In general terms, medical decisions about what we SHOULD do are said to be guided by four equally weighted “universal”1 ethical principles:
BENEFICENCE, the expectation that decision-makers (individual or collective) should do whatever is “right” and “good”.
NON-MALEFICENCE, or “least harm”, requiring that decision-makers strive to do the least harm possible, to the fewest people.
RESPECT FOR AUTONOMY, which assumes that rational and reasonable individuals can and should make their own decisions, based on their own values, unless those choices trespass on another person’s decisions and actions. By this logic, paternalism and coercion are inherently bad and wrong (but may be necessary in some trespass situations).
JUSTICE, or “fairness”, the obligation to fairly balance competing claims. This takes three forms:
distributive justice (fair distribution of scarce resources),
rights based justice (respect for people's rights), and
legal justice (respect for morally acceptable laws).
Of note, these principles bridge different philosophical theories:
Beneficence and non-maleficence reflect Utilitarianism, which seeks to maximize good and minimize harm, in effect balancing the CONSEQUENCES of action (or inaction). To the extent that we believe that benefits and harms are observable and quantifiable, this approach also aligns with the Objectivist approach to medicine, in which we believe we can understand the whole through a detailed and values-free study of the parts.
Respect for autonomy comes to us from Deontology, in which ACTIONS are judged based on whether or not they adhere to a set of rules or duties, rather than the consequences of those actions.
Justice comes to us from Virtue Ethics, which focuses on INTENT (as defined by character and virtue), rather than rules or consequences.
Unsurprisingly, the application of these four principles is rarely straightforward, and there are frequent conflicts.
Well-intended actions sometimes have bad consequences (e.g. thalidomide). Rules sometimes have to be broken, to avoid harm (e.g. killing someone in self-defense).
At the individual level, benefits and harms take many forms and cannot be reduced to a single unit of measurement. Sometimes you are balancing today’s side-effects against the chance of a future harm. Besides that, the data can be questionable — early research findings almost always over-estimate the immediate benefits and underestimate the long-range harms. Real-life patients often differ from those in the research studies, in which case we don’t always have actual data about harms and benefits — in these cases, we rely on the “consensus opinion of the experts”, which is, as it says, opinion, not evidence.2
Collectively, things that are thought to benefit some individuals within a large group (like mass vaccination programs) may harm other individuals, leading to questions about whether individual autonomy should be allowed. Wait lists for scarce publicly funded care may mean that individuals can’t always make their own choices (even if they have the money to buy their own care), while the harms of excessive waiting receive less consideration than the alleged benefits of fair distribution.
So, in considering any decision about what we SHOULD do, individual or collective, we are told to consider each principle in turn, weigh the conflicts, and then decide, on balance, the best course of action.
So, what’s the problem?
There is research to show that the people who profess to value the ethical principles do not always use them directly in their decision-making process, perhaps because they are relying on something even more fundamental, like moral norms. They leap to a conclusion, based on their internal moral compass (thinking fast, in effect), then, if questioned, justify their conclusion by selective (and retro-active) application and interpretation of the four principles (thinking slow).
As no two individuals are alike, it’s inevitable that rational and reasonable individuals often arrive at different conclusions.
At the individual level, involving individual treatments for acute problems carrying individual benefits and harms, this underscores the need for autonomy. In considering my hip replacement, my values affect my decision, and it doesn’t have to be all about me. I might decide that I’m too old to tie up valuable resources that should benefit others. Conversely, I might decide I’m worth it, even though I’m old and feeble. Ultimately, nobody else can decide for me.
When it comes to harmful things, John Stuart Mill (1806-1873), said (emphasis added):
“The object of this essay is to assert one very simple principle, as entitled to govern absolutely the dealings of society with the individual in the way of compulsion and control, whether the means used be physical force in the form of legal penalties or the moral coercion of public opinion. That principle is that the sole end for which mankind are warranted, individually or collectively, in interfering with the liberty of action of any of their number is self-protection. That the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant. He cannot rightfully be compelled to do or forbear because it will be better for him to do so, because it will make him happier, because, in the opinions of others, to do so would be wise or even right. These are good reasons for remonstrating with him, or reasoning with him, or persuading him, or entreating him, but not for compelling him or visiting him with any evil in case he do otherwise. To justify that, the conduct from which it is desired to deter him must be calculated to produce evil to someone else. The only part of the conduct of anyone for which he is amenable to society is that which concerns others. In the part which merely concerns himself, his independence is, of right, absolute. Over himself, over his own body and mind, the individual is sovereign.”
On Liberty, 1859
Granted, that’s one man’s opinion (which I happen to share), but it supports my point that my health problems, generally speaking, are mine and mine alone, unless they harm others (i.e. “trespass” on their rights). Even though they may (or even will) be harmful to me, I make the decisions.
This concept is well recognized in health care, where we talk about accepting and respecting a patient’s decision to “live at risk”, respecting the patient’s life context, goals, and values. The onus is on health care providers to justify any decision to override the patient’s wishes, and it must be based on SIGNIFICANT risks, not the things that are highly likely but minor (like getting influenza), or major but so unlikely as to be almost theoretical. After all, risk can NEVER be totally eliminated, and we ALL choose to live with some degree of risk.3 Some folks even seek it out!
For collective decisions, you have a large group of people holding different moral, religious, professional, and political beliefs and values. To add to the confusion, modern medical decisions more often involve population-wide interventions for chronic problems or prevention, things which benefit some people and harm others. With high blood pressure screening, for example, you’ll assess hundreds and then treat dozens of people for years on end to prevent a few heart attacks and strokes in a tiny fraction of the group. How do you quantify and balance the harm of today’s medication-induced impotence in one man against the avoidance of another man’s future non-fatal heart attack?
All that being the case, in deciding what advice we should offer to the group, the best we can hope for is something I’ve seen described as “a broad and durable consensus”:
A significant portion of the affected group, community, or population must support the consensus, including and respecting individual autonomy and diverse perspectives.
In this context, consensus means a general agreement, reflecting a shared understanding of the issue. It involves finding the common ground, rather than a simple majority vote.
Durability implies that the consensus is not easily overturned or challenged, implying a level of commitment and stability that allows for long-term planning and implementation.
Clearly, deciding what we SHOULD do requires more than somebody declaring that “the science is settled”. It involves much more than a small group of experts coming together behind closed doors to hammer out a clinical practice guideline, in the expectation that practicing physicians and their patients will comply. The experts should describe the available options, rather than prescribing a “one size fits all” course of action.
Our current ethical decision-making processes have become grossly over-simplified. In the interests of “the greater good” and “distributive justice”, we’ve over-emphasized the collective (rather than the individual) balance between benefits and harms. We do so because we imagine it’s the fair and virtuous thing to do. The classic justification is “nobody else should ever have to experience this!”
Rather than letting individuals make their own decisions (and mistakes), there’s a belief that nobody should be allowed to miss out on a potential benefit and nobody should be exposed to an avoidable harm, no matter how improbable or inconsequential those benefits or harms might be. We don’t want anybody to live at risk!4
Personal values no longer apply — it’s public! We’re actually more paternalistic than ever, but the paternalism is applied at a different level, determining which conditions are worthy of study, which interventions should be researched, which outcomes are considered important, what results get published, and which treatment plans are officially sanctioned.5 Individual autonomy takes the back seat. You can have (or refuse) any health care intervention you choose, as long as the experts feel that you’re doing what’s good for you (or, more accurately, good for your group).
Don’t believe me?
I’ll leave you with a few examples.
Canada is now facing its lowest rates of hypertension treatment and control in more than a decade, and we cannot afford to remain complacent. With an aging population, the number of people living with hypertension is growing, and the number of adults with hypertension who remain untreated or uncontrolled will only increase if we do not act, which will lead to greater rates of preventable disability and death. Renewed interest in blood pressure control is needed, with resurrection of previous implementation efforts to provide effective care and re-engagement of the federal government with health and scientific sectors to enhance monitoring and evaluation.
Refocusing on hypertension control in Canada, Leung et al, 2021
Consider this. High blood pressure is a risk factor for atherosclerosis, which is a risk factor for heart attacks and strokes, the treatment of which has improved over the past 20-30 years. In fact, mortality rates are dropping! Still, everyone is at risk for heart attacks and strokes, some more so than others, and we all have different tolerance for risk. Some choose to take medication to lower their blood pressure. Some choose not to, perhaps because the target keeps shifting, the medications cost money and have side-effects, and the benefits are uncertain and decreasing. With more people choosing to live at risk, these authors suggest that we need “re-engagement of the federal government”, among other things. In their opinion, the moral coercion of public opinion would be wise, or even right.
“The US Preventive Services Task Force (USPSTF) updated their breast cancer screening guidelines in April 2024 to recommend starting screening mammography at 40 years of age and continuing biennially until 74 years of age, or 18 screening mammograms during a woman’s lifetime.”
Screening Mammography for 40-Year-Old Women — Whose Decision?, Kerlikowske et al, 2024
Consider this. The Task Force didn’t want anyone to miss out on the possible benefits of early detection, even though the likelihood of benefit for a 40-year-old woman from starting biennial screening mammography at 40 years of age rather than at 50 years of age is almost theoretical, like a lottery ticket (about 1 in 1000). There was no new or compelling data to support their new recommendation. Breast cancer mortality for women of all ages has been decreasing for the last 30 years, in part due to improved treatment. The Task Force ignored the harms of their advice, which include more benign biopsies (65 per 1000 women), false-positive mammography results (50%!), and over-diagnosed breast cancers (2 per 1000 women). They aren’t saying it should be available for those who choose it, they are recommending it, another example of the moral coercion of public opinion.
Clinical practice guidelines (CPG) are written with the aim of collating the most up to date information into a single document that will aid clinicians in providing the best practice for their patients. There is evidence to suggest that those clinicians who adhere to CPG deliver better outcomes for their patients. Why, therefore, are clinicians so poor at adhering to CPG? The main barriers include awareness, familiarity and agreement with the contents. Secondly, clinicians must feel that they have the skills and are therefore able to deliver on the CPG. Clinicians also need to be able to overcome the inertia of “normal practice” and understand the need for change. Thirdly, the goals of clinicians and patients are not always the same as each other (or the guidelines).
Why are clinical practice guidelines not followed?, Barth et al, 2015
Consider this. CPGs are written in the hope that they’ll include all of the relevant information about a clinical scenario, thereby guiding clinicians to provide the “best care”. Healthcare administrators, regulators, and policy-maker payers often consider CPGs to represent “standards of care”.6 The widespread expectation is that clinicians and their patients will comply. However, there are plenty of articles out there bemoaning the fact that they don’t! Some authors are self-aware enough to recognize that the guidelines themselves are flawed7. Others, like those quoted above, mention in passing that individual clinicians may rightfully disagree with the expert advice, or that the clinicians and patients may not have the same goals as the authors of the CPG. They acknowledge autonomy but end up wanting to beef up the guidelines (and compliance). Moral coercion, again.
“An appraisal of international guidelines for care and treatment of children and young people with gender incongruence found that that no single guideline could be applied in its entirety to the NHS in England.
While a considerable amount of research has been published in this field, systematic evidence reviews demonstrated the poor quality of the published studies, meaning there is not a reliable evidence base upon which to make clinical decisions, or for children and their families to make informed choices.
The strengths and weaknesses of the evidence base on the care of children and young people are often misrepresented and overstated, both in scientific publications and social debate.”
The Cass Review, Final Report, Hilary Cass, 2024
Consider this. The Cass Report and other publications, including The WPATH Files, have demonstrated that the published guidelines for gender dysphoria are not built on solid evidence. Even so, medical organizations in Canada, including the Canadian Medical Association, are fighting against any attempts to dial back the harmful “gender-affirming” model of care. Individual physicians can and often do disagree with the model of care, either due to conflicts of conscience arising from their belief structure or religion or simply because they rightfully dispute the evidence. Even so, they still must “… discuss all available treatment options with the patient and must not withhold information regarding a procedure or treatment relevant to the patient’s condition, even if providing such information conflicts with the physician’s conscience.” In short, even when there’s no good quality evidence, and even when the consensus of opinion is neither broad nor durable, individual physicians are required to discuss harmful treatments with their patients and then make effective referrals to others. Ideology, in this case, trumps beneficence, nonmaleficence, and autonomy.
Why? Because somebody wants to feel important!
“Half the harm that is done in this world is due to people who want to feel important. They don't mean to do harm; but the harm does not interest them. Or they do not see it, or they justify it because they are absorbed in the endless struggle to think well of themselves.”
The Cocktail Party, T.S. Eliot, 1950
I’ve put the “universal” in quotes, because I’ve read that not all religious and other groupings actually do share these values. Buddhism, for example, apparently doesn’t support the notion of individual autonomy.
Many things in medicine were once supported by the consensus opinion of the experts, including leeches, laxatives, bleeding, trephination, NOT washing hands between patients, etc.
As Joe Jackson puts it in one of his songs, “Everything Causes Cancer”. More pragmatically, we are all going to die in the end, so I laugh when I hear talk of some intervention preventing death — the best you can hope for is to defer it.
If lottery tickets were health interventions, we would want lottery tickets for everyone (so nobody would miss out on the chance to win), and the lottery tickets would be free (so nobody would suffer the harm of spending hard-earned money on a losing ticket). Never mind the societal cost, the harms of winning (many winners are actually less happy, in the end), or the harms of losing!
HINT. Most of these decisions involve profit.
The College of Physicians and Surgeons of Nova Scotia defines Standards as things you are required to be familiar with and comply with, whereas Guidelines are recommendations to follow whenever possible and appropriate. Standards aren’t optional, guidelines are.
See, for example, “Medicine Standards: Two More Decades of Little, If Any, Progress”.
Mammography is an interesting case in point. Here is a very good article about how the Cochrane review, which once started out as idealistic became a nightmare:
https://open.substack.com/pub/brownstone/p/cochrane-on-a-suicide-mission
Blood pressure and the vilification of sodium levels is another issue that for-profit industry has influenced (to the detriment of patients).
At the end of the day, all of us must make a decision clinically, based on the best info we have at the time, while continuing to search for more information. Although, it would be good if nutritional medicine was also a larger part of the curriculums in med school.