Western Bioethics Ignores the Family

At the end of my stay in Singapore I participated in a conference on "The Ethics of Family Involvement in Healthcare," sponsored by an international research consortium I'd not encountered before but whose mission I was totally in sync with:

Despite many attempts to broaden its ethical gaze beyond the patient-centered focus of traditional medical ethics, bioethics remains strongly individualistic. The patient is treated as a self-interested individual unencumbered by personal relationships, and the principle of self-determination is dominant. However, many areas of biomedicine call for a more relational perspective. This international collaborative project on family ethics is about just that.

In my clinical work I've been very attentive to the family context of my patients, but in my work on ethics it's the neglect of the individual's responsibilities as part of a society that I've attended to. I've argued ad infinitum that medical ethics - especially in the US - has attended too exclusively to the needs and interests of the "numerator" (the individual) without attending to the needs and interests of the "denominator" (the society the individual is part of). In the US that focus has led to wildly excessive health expenditures and neglect of public health and other social goods.

In 1989, during my first visit to India, I visited the psychiatry department at Banaras Hindu University. A resident who was Indian by birth but who'd lived in the US through his teen age years and seemed very American was showing me around. On a hospital ward I saw an older woman combing the hair of young adult patient. I asked about what I interpreted as remarkable nursing care. The resident explained that this was her mother, and that patients were accompanied in the hospital by family members. I then asked a very American question - weren't the patients worried about privacy and confidentiality? The resident, despite having grown up in the US, simply didn't understand my question. He explained that their worry was about not being extruded from the family.

My question showed that I'd been more influenced  than I'd realized by the tendency in US psychiatry to blame the family for the patient's problems. When I trained as a resident (1965 - 1968) and did a fellowship at the Family Studies Unit at the National Institute of Health (1968 - 1970), the concept of the "schizophrenogenic mother" was still widely accepted. When I was responsible for a hospital unit at the Massachusetts Mental Health Center (1970 - 1973), I was concerned that many staff members had a hostile view towards families, and often made them feel unwelcome, and I did teaching sessions about the important role of families as caretakers. But at Banaras Hindu University my reaction focused on fear of not having privacy, not fear losing family ties.

I believe the tendency of US medical ethics to see the individual as an atom of self-interest and threatened rights comes from two main sources - (a) the anti-family tilt of American culture in the last half of the 20th century and (b) an effort to give the patient more authority and power in the patient/physician relationship. This latter aim has led to a beneficial and overdue rebalancing of the interaction between patient and physician elegantly conceptualized in the concept of "shared decision making," but US medical ethics needs to incorporate more recognition of the role of "families of origin" and "families of choice" in the ethical equation.

There's no way to make clinical ethics tidy. Sometimes families are intrusive, hurtful, and even profoundly destructive. Somtimes they are nurturing and crucial for an individual's well being. And, as most of us have experienced, family involvement is typically a blend of delight and exasperation. Sorting out the situation is what makes the health professions so challenging, so important, and so much fun!

Suing your children in Singapore

In the post I wrote yesterday I referred to the tradition of filial piety in Singapore. When I was discussing that topic with a lawyer at the Centre for Biomedical Ethics he told me about Singapore's fascinating "Maintenance of Parents Act," which went into effect in 1996.

The law allows any Singapore resident, 60 years old and above, who is unable to maintain himself adequately, to claim maintenance from his or her children, either in a lump-sum payment, or in the form of monthly allowances. If the parent gives consent, relatives or caregivers may apply for court action on the parent's behalf. Cases (recently there have been about 100-150 per year) are heard by a special Tribunal that decides whether payment should be made and how much it should be, based on criteria including the parent's financial needs and the child's earning capacity and other financial obligations.  The maintenance claim may be dismissed if the children can prove that they were abused, neglected or abandoned by their parents when they were young. The law stipulates that only the basic amenities and physical needs of the applicant including shelter, food and clothing are required.  The maintenance is not linked to the parent’s previous standard of living.The applicants tend to be Chinese fathers, either widowed or divorced.
The law was proposed by Walter Woon, who was a member of the Singapore Parliament at the time and also professor of law at the National University of Singapore.I found his comments about the law very persuasive, and quote them here:

Some critics have said that applying to the court for maintenance from one's children is undignified. I wonder whether it is more dignified to apply for public assistance or to depend on the kindness of strangers. Or perhaps it would be more dignified to starve quietly and without fuss.

Cynics have dubbed this the 'Sue Your Son' law. They miss the point completely. It would be only in a very extreme case that any parent would take his children to court. The effect of the bill, if it becomes law, will be more subtle.

First, it will reaffirm the notion that each individual has a responsibility to look after his parents. It is not society's responsibility. Singapore is still conservative enough so that this idea is not objectionable to most people. The bill reinforces the traditional values of Christianity, Islam, Hinduism and Buddhism as well as Confucianism. It doesn't hurt a society now and then to be reminded of what its core values are.

Second and more important, it will make those who are inclined to shirk their responsibility think twice. As things stand, If a person asks family members or clergymen or the Ministry of Community Development to help him get financial support from his children, the most that they can do is to try to mediate. The trouble with mediation is that the mediators have no teeth. They can exhort, preach, persuade, cajole, plead and even beg. But when push comes to shove, there is currently no way that a son can be forced to support his parents.

But if there were a legal remedy, that would be a different matter. To be sued by one's parents would entail a massive loss of face. It would be a public disgrace. The hand of the conciliator would be immeasurably strengthened. It is far more likely that some sort of amicable settlement would be reached through private mediation if the recalcitrant son knows that the alternative is a public trial. So, one hopes that the fact that such a law exists will make it unnecessary for it to be invoked.

The critics who say that the proposed law does not promote filial piety are right. It has nothing to do with filial piety. It kicks in where filial piety fails. The law cannot legislate love between parents and children and husbands and wives. All the law can do is provide a safety net where morality proves insufficient.

I take a pragmatic view. The law I have proposed won't affect the people who already are supporting their parents, not only with money but, it is hoped, with love and respect. The only ones who need worry are those who aren't living up to their moral obligations. If the law helps even one poor person, I think the effort is worth it.

Many years ago, in what turned out to be the last year of my father's life, I persuaded him to move from Florida to Massachusetts, where I live. He was blind from macular degeneration and needed a supportive living environment - ultimately one with 24 hour nursing care available. I engaged a geriatric care manager to help me (his only child) scope out the options. She told me about maneuvers that would allow him to receive Medicaid support. In the spirit of Professor Woon, I did not want to do that. The care my father  needed was costly, but I could afford it, and it seemed obviously wrong to ask my fellow citizens to support him. If I had refused to pay for his support I hope Medicaid would have come after me, as Professor Woon wanted the Singapore authorities to be able to do.

Setting Limits Fairly in Singapore (2)

I wrote a post yesterday  before I led a workshop for ethics committees or hospital personnel simply interested in the ethics of setting limits in health care . Today I want to write about what I learned from the 25 wonderfully engaged folks I met with and from conversations subsequent to the workshop. Here are my initial observations:

1. One of the three core components of the framework for setting limits fairly that Norman Daniels and I developed is publicity or transparency. On the basis of our observations in the US, Canada, and the National Health Service in England, we argued that those responsible for setting limits (health plans, government agencies) should share the rationale for policies and decisions with the public. In liberal democracies in the west, this stipulation is widely accepted. My impression is that Singapore has more of a tradition of accepting governance by experts and judging their policies by results, without expecting the level of transparency, access and participation that is especially valued in the US. The group I spoke with suggested that the value we in the US place on transparency is not as strongly shared by the population and government in Singapore. To be useful, transparency requires a public experienced in understanding, evaluating, and interacting with policy makers, and policy makers experienced in a reciprocal role. My tentative conclusion thus far is that for transparency to contribute to improved policy making in Singapore, a period of learning or skill development will be required. I did not recommend a sudden shift in practice, but did suggest development of a strategy for how to engage the public in constructive interactions over time.
2. Physicians in the group told me that it's common for families to press for continued "treatment" even when the clinical staff has concluded that comfort care is the right approach. I asked them whether families doubted their clinical assessment or believed that a miracle might occur. Those weren't the reasons. They explained that there is a strong expectation of filial piety in Singaporean culture, and not pressing for continued active "treatment" felt disrespectful and even shameful to the family. They hoped that as advance directive conversations became better developed they will be able to talk with children about "what would your father/mother have wanted in this situation?" Their sense was that as is true in the US, most elderly people would want to shift to comfort care and not be "flogged" by fruitless interventions. Moving to comfort care could then be seen as the way to show true filial piety!
3. As part of our discussion of the family role in setting limits, a participant told us that because of family guilt if they feel they aren't doing "everything," talking with families about options that from a realistic perspective offer no benefit even though we can never say with absolute certainty that they won't be effective for the first time now can cause real harm to families. She described a situation in which a family sold its home to pay for an intervention that in practical terms was "futile."
4. Singapore health policy has been developed to minimize the risk of what they call the "buffet syndrome" - that full coverage creates "moral hazard" and will lead to excessive utilization. Their system of required savings to pay towards one's own (and one's family's) care is very cleverly engineered to confront Singaporeans with the cost implications of their treatment and, at the same time, to try to make sure that they have resources in their savings accounts to pay for their choices. But with an aging population, more chronic illness, and new technologies, middle class families are facing costs they can't reasonably meet. The group cited another instance where in order to finance valuable treatment a family had to sell its home and impoverish itself. This was consistent with what a taxi driver told me - "In Singapore you can die, but you can't be sick."

Because of its good population health outcomes and low public spending (between 4-5% of GDP) the Singapore health system has received great praise, especially from strong believers in the market and "skin in the game." But because of the high payment expectations it sets for its citizens it has been criticized by liberal believers in comprehensive coverage. From my meeting with the workshop participants, and from a subsequent meeting with officials in the Ministry of Health, I believe the praisers and the critics are both wrong. Singapore hasn't found a magic bullet that can be readily transferred elsewhere. But Singapore hasn't created a cold, uncaring system. They're struggling very thoughtfully with the problem every developed economy is struggling with - how to find the optimal combination of communitarian caring for the population with the individuals responsibility for his own health and for the cost of care for himself and his family. What I would praise and want the US to emulate is the combination of thoughtfulness, analytical clarity, and non-ideological deliberation about managing the dilemmas of modern health care.

Setting Limits Fairly in Singapore (1)

This afternoon I'm speaking to members of the ethics committee (and interested others) at Tan Tock Seng Hospital in Singapore. The hospital was founded in 1844 by Mr. Tan, a wealthy Chinese businessman, who donated $7,000 to found a hospital for the "diseased of all nations." It's a large hospital, with 460 emergency visits and more than 2,000 specialty clinic visits every day.

I've been asked to speak about "Accountability for Reasonableness," the framework for setting limits that Norman Daniels and I described in our book Setting Limits Fairly. From a combination of conceptual analysis and field work done in the U.S. at not-for-profit organizations like Kaiser Permanente, and in Canada and the UK, we concluded that health care limit-setting required a fair process, which the book explicated. The framework emphasizes the role of relevant reasons, transparency about policies and their rationales, and processes for appeal and revision.

The framework has been found useful in liberal western democracies like Canada, the National Health Service in England, and the Scandinavian countries that have universal coverage under publicly established budgets. Singapore is decidedly "first world" in its remarkable economic achievements since independence (1965) - its per capita GDP in 2011 was approximately the equivalent of US$50,000, and the unemployment rate was 2.1%. From talking with Singaporeans and reading, my impression of the society and its governance is that it is much readier to accept expert authority than the US and liberal western democracies.

The ethics committee has asked me to discuss the case of a middle aged man with severe rheumatoid arthritis, for whom a costly new medication has been recommended. In the US context there would be no question as to whether insurance would cover the medicine if the clinical reasoning behind the recommendation was sound. Any debate about coverage would be expected to be open to public scrutiny. From what I learned from my colleagues in rheumatology, a patient in his condition would expect to have access to the medication in the US, and would certainly expect  to be able to challenge a decision not to be given access.

But as a visitor here I'm acutely aware of what a terrible example the US sets as a health system. Our costs are strangling other important societal investments, and because of our out of control costs we've left 50 million to be uninsured. So while I'm proud of the work Norman Daniels and I have done on fairness, I'm agnostic about its relevance for another society with (a) different moral and political traditions and (b) excellent overall health outcomes. I'll be introduced as a visiting expert, but before meeting with a group that provides clinical care and is concerned with ethics, I feel more like a learner than like someone ready to pronounce the truth about setting limits in a society significantly different from my own.

Health Care in Singapore

I've had the good fortune to be invited by the Singapore Centre for Biomedical Ethics to do a week of teaching about health system ethics. Right now I'm at Heathrow airport in London, in between the Boston to|London and  London to Singapore legs of my trip.

Although there's been a lot of interest in Singapore among health policy cognoscenti, I'd been in the dark about the Singapore system until I started preparing for my visit. My impression thus far is that the People's Action Party, which has governed since independence in 1965, sees health care as (a) a crucial contributor to well-being but (b) largely an individual responsibility to provide for oneself and one's family, and (c) not a right the state is responsible for fulfilling.

When Singapore became independent in 1965 it was impoverished, with a life expectancy of not much more than 60. The government's initial emphasis was on the determinants of population health - housing, clean water, jobs, and education. On the basis of their vigorous action, health and mortality improved markedly. In 1984 they introduced a mandatory medical savings account program - "Medisave" - in which all working people, including the self employed, contributed 6-8% of income to their "Central Provident Fund" account, to be used for their own medical care and for family members (spouse, children, parents and grandparents). In the 1990s the government introduced an insurance scheme ("Medishield") and a means tested fund for low income folks ("Medifund"). But there's still a very strong emphasis on individual responsibility and paying a fair share of the cost, even for the poor. (For information about the Central Provident Fund and the system of "3 Ms", see here .)

I've been told the Singaporean government sees "insurance" in a negative light. "Insurance" connotes dependency on the state and abdication of personal responsibility. In the U.S. the frequent comment that our health system is so out of control because the population lacks "skin in the game" comes from the same moral and economic perspective. As a dyed in the wool liberal I'm a staunch believer in a universal system - either something like Medicare for all or guaranteed access to strictly regulated health plans. The framework of values in Singapore is jarring for me, but their outcomes appear to be terrific, in terms of health indices and a much less costly system than we have in the U.S.

Since I recurrently criticize conservatives for what I describe as their "theological" commitment to market solutions, to be consistent I have to challenge my own liberal theology on this visit to Singapore. Stay tuned