Capacity is not an on-off state

There is a stigma associated with the restriction of liberties. Becoming internalized, it tends to produce a reduction of the patient’s sense of self-worth

Professor Arthur Schafer, Founding Director of the Centre for Professional and Applied Ethics at the University of Manitoba

Within the walls of our garden where we isolated, the reality of the outside world arrives diluted. It feels like I’m living under water. With the difference that compared to an aquarium, I can be on either side of the glass. Sometimes, I observe the world through a screen, sometimes I’m immersed in it, soaking wet with its stories. While I go about my day, I try to find a place for what I read. Some stories fit effortlessly inside a framework and others, obviously, don’t. 

Amongst the stories that I struggle to place there are the ones related to care homes. I wonder what outrage would have poured out, if the victims of neglect had been young instead of old? My hunch is that, infused in the fabric of care, there must be some molecules of ageism that we take for granted. Following this thread, I got in contact with Professor Arthur Schafer, a Canadian ethicist, specializing in bioethics, philosophy of law, social philosophy, and political philosophy. Founding Director of the Centre for Professional and Applied Ethics at the University of Manitoba, Professor Schafer pointed out a few nuances that have escaped my radar.

When it comes to frail elderly nursing home residents we have an understandable bias, sometimes conscious but sometimes unconscious, in favor of protecting residents from accident or injury even when this means imposing serious restrictions on their liberty. It is possible that a bias in favor of safety to avoid Covid-19 infection led us to impose almost total isolation on nursing home residents thereby depriving them of any contact with loved ones. Given a choice, some nursing home residents would surely have been willing to accept a modestly increased risk of infection in order to interact meaningfully with family and friends. As I realized after my recent talk with Martin Hyde, Associate Professor of Gerontology at the Centre for Innovative Aging at Swansea University , our underlying economic infrastructure must be factored into the equation. The debate on utility maximization and justice cannot be a field of intellectual exercise for philosophers and medical students anymore. Because it sits in the middle of our reality, we need to question the resources, their use, or the reasons for the lack thereof. This is what Professor Schafer and I talked about.

In your contribution to the book Ethics and Aging, you wrote about two different models to address care for those in need: the “civil liberty model” and the “paternalistic medical model.” Can you briefly explain the difference between the two? 

Every year in North America thousands, perhaps tens of thousands, of elderly patients are subjected to involuntary restrictions on their liberty. The restrictions may be physical or pharmacological, but in either case they are often experienced as deprivations of liberty. The justifications usually offered for imposing restraints appeal to the safety of those restrained; they are thought to be “at risk” and require protection from self-inflicted harm. An additional or alternative justification appeals to the need to protect others, patients or medical staff, from harm. These justifications are sometimes compelling. Nevertheless, the danger of abuse and misuse of restraints is significant and the cost, in terms of individual liberty, is high. 

The problem can be approached by two models of thought: the civil liberty model and the paternalistic medical model. The civil liberty model invites us to treat the patient as a person with rights of self-determination. This happens even if his/her autonomy has been, to some degree, compromised by frailty and cognitive impairment. The paternalistic model, instead, asks only: “What will best safeguard the patient?” “What is in the patient’s best interests?” Many nursing home residents would be willing, if given a choice, to trade-off some protections in order to enjoy greater freedom of action and choice. But a more paternalistic orientation often appeals strongly to caregivers who fear being blamed or sued and to families who often underestimate the importance of self-determination to their elderly relatives. 

We tend to take the paternalistic medical mode for granted. Why is this so?

When it comes to dealing with frail elderly patients, the paternalistic model is no longer as dominant as it was once. But to the extent that it is taken for granted, still, by some/many caregivers and family its hold on our imagination may come from any of several factors. 

For example, a failure to recognize that capacity is not an on-off state; it comes in degrees and is situational. So one may be incompetent when it comes to managing one’s finances or driving a car but nevertheless competent to decide whether one wishes to be free of physical or pharmacological restraints even when increased freedom would mean increased risk of falls or getting lost. 

In this equation, considerations of economics and convenience also play some role. It can be expensive in money and time to allow greater freedom to frail/elderly/impaired individuals. It’s often cheaper to restrict their liberty, with either physical or pharmacological restraints. Freedom for the elderly can mean extra expense for the family or for the institution, since extra staff will have to be employed. 

Finally, there’s also the fear that one will be blamed if harm to the elderly patients results from freedom. This fear is shared by institutions and by families.

The medical model creates a short circuit of opposing needs. You pointed out that this has an effect on the patient, too.

The medical model is founded upon compassion and a desire to help, but in practice it may be experienced by the elderly patient as controlling and demeaning. The essence of being a mature adult person is to have others respect one’s choice. When an elderly patient is labeled as incapable of rational choice, those who apply the label, as well as others, come to view the patient as not fully a person and, frequently the patient comes to view himself as less than worthy of respect. 

In other words, there is a stigma associated with restraints, and the stigma tends to become internalized and so produces a reduction of the patient’s sense of self-worth. Even those patients who are not submitted to physical or pharmacological restrictions are subjected to restrictions of their liberty as residents of a care facility. 

Is it possible that our social conscience internalizes the stigma associated with the restraint of liberty and this, in turn, fuels the devaluation of the older adults?

Not sure. But sounds plausible.

You noted that, “elderly patients are frequently deprived of their liberty illegitimately as a result of failure on the part of family and medical staff to pose the right questions (…). The key normative questions are never explicitly raised because the issue is perceived as a medical rather than a moral problem.” What would it take, instead, to raise and face normative questions?

Not sure. Part of the answer might be: Better education (in these issues) of physicians, nurses, nursing assistants and all who are involved in the care of people who are frail and elderly. I don't think that the issues and trade-offs have received adequate attention and discussion. But this is an empirical issue and it’s one about which I have no current data.

Does the same paradigm (medical rather than moral problem) apply to the Covid-19 emergency in relationship to older patients?

I would pose a different question. By denying frail elderly patients, even those who are dying, any close physical contact with their family and friends, are we usurping their right to choose whether the extra risks might be worth taking for the benefit of staying close to those one loves? Complete lock-down seems a crude and hurtful way of protecting long-term-care patients/residents. Other alternatives might provide a better balance.

In a recent article, the cultural critic of age Margaret Morganorth Gullette labeled an age-based triage due to the lack of resources in our hospitals as “a crime against humanity.” What is your take?

In practice, I don’t think that hospital Intensive Care Units have been compelled to engage in triage of this sort. That’s because in most of Europe and North America “the curve was successfully flattened” by public health measures. But if/when triage were to be employed I would not necessarily consider it to be a “crime against humanity.” So, for example, very elderly frail patients almost never benefit from intubation, which is an aggressive and distressing intervention that is only warranted for those who are likely to survive. Many frail elderly Covid-19 patients are more likely to be harmed than benefited by aggressive ICU care. My hunch is that the frail elderly would very seldom choose aggressive life-support if they were well-informed about the likelihood that harm will considerably outweigh benefit. On the other hand, denial of such care to an otherwise healthy patient who could likely benefit and who would want to be admitted to an ICU may rightly be described as “age-discrimination.”

One explanation for the (age-based) triage in our hospitals is the need to protect doctors from the burden of decision making. Does our inability to ask questions about death (and therefore to reflect on the meaning of life) influence the need for a triage?

In my view, triage should almost never be age-based. It should be based, above all, on likelihood of benefit. But where it is deemed necessary and ethically appropriate to ration scarce life-saving resources then it is probably preferable to have publicly known and system-wide criteria of allocation. The alternative – bedside rationing by physicians – leads to wild divergences of treatment decisions (based on the subjective preferences of individual doctors), arbitrariness, unfairness. It opens the way to all sorts of wrongful discrimination: class, race, sex, celebrity, power, wealth.

At the turn of the century, relying on cost-benefit analysis, the US decided to shift from the “Value of a statistical life” to the “Value of a statistical life year,” whereby benefits calculations for the older generation are significantly lower compared to those for children. Does the increasing privatization of care play a role in the change of paradigm and the emergence of a utilitarian view?

The increased privatization of elder-care promotes significant lowering of standards of care, in pursuit of profit-maximization:  fewer and less-qualified caregivers, less liberty for patients, lower standards of hygiene, lower standards of food, fewer amenities. There is a strong utilitarian argument against privatization based on the overall suffering and harm that results to large numbers of vulnerable people. The fault is not with the principle of utility. The fault is with ignoring the principle of utility - “the greatest happiness for the greatest number of people”; and the minimization of suffering – in favor of a market-place ethos of short-term profit-maximization.

In your article “Bedside rationing by physicians: the case against” you called into question the massive waste of resources built into the American health care system and, to a lesser extent, to the Canadian system. Looking at the economic side, does this element need to be factored in when we reflect on scarcity of resources and/or rationing?

A study by Woolhandler and Himmelstein pegs the costs of health care administration in the United States at slightly over 24% (1.4% of GDP), compared, for example, to a Canadian level of 11% and to a European level in the single digits. In part because of such “waste” (as I shall label it), and despite the very large size of the U.S. health care budget, tens of millions of American citizens are without any health care. Were this waste to be removed to any significant degree, there might be no need to ration. Or, the need for rationing might become a marginal problem resolvable by a variety of small measures.