I spent last week in Singapore, where an excellent breakfast of noodles and teah o ais limau (Malaysian-style iced tea with lemon) costs about $2 and is served at an open-air hawker center in under 10 seconds. Observing this Singaporean balance of efficiency, quality, and cost, made possible by the unstinting hard work of the hawkers and also by a system that plans and regulates these complexes of food stalls throughout the city, was good daily preparation for a week of discussions about the social values of this aging society as they are translated into policies and practices benefiting aging, chronically ill, and dying people and their families.
Singapore is the fastest-aging society in the world. Being ranked number one is usually a matter of local pride, but in this case, it means that this highly developed city-state of 5.5 million is ahead of other nations in grappling with the reality that if your society is aging, it includes a lot of people facing dementia. Our team, led by Singaporean bioethics scholar Jacqueline Chin, has begun these discussions with local physicians, nurses, social workers, program administrators, and policy-makers as background for the second edition of the Singapore Casebook, which will focus on the ethics of care transitions in aging societies.
Some of the definitions and questions we began to tackle are familiar across aging societies. For example, the common metaphor of population-level aging as the “silver tsunami” is problematic. By suggesting that the oldest old, as their health deteriorates, become a natural disaster, the metaphor presents older people as a threat to society rather than members of society. One senior physician framed the situation as the human dilemma it is: “We got what we wanted” – longevity, the successful cure or control of once-fatal conditions – “and now we don’t know what to do about it.” The successful cardiac bypass at age 70 means a person is free to develop dementia at 85. Articulating the actionable social values of an aging society, such that it can devise and sustain reliable, compassionate, praiseworthy systems of care for those who are frail, cognitively incapacitated, or both, means keeping track of how far people (unless they are wealthy) are from real “choices” in how they are cared for. So the first step is to proceed with greater empathy, while keeping the immensity of the societal, familial, and personal challenges in view.
As in the United States, most services for people nearing the end of life in Singapore still presume a disease trajectory such as cancer or organ system failure and do not line up well with the long trajectory of frailty and dementia, in which people often need basic supplies and increasing levels of services every day, for years. Also as in the U.S., advance care planning often does not match up with this long trajectory. For an otherwise healthy person with early-stage dementia, imagining both future incapacity and the possibility of other medical conditions requires support from professionals with knowledge of how a person with this condition thinks and is able to take in new information. Also, the frequent reduction of end-of-life planning to discussing and documenting what one thinks one will not want fails to consider the reality of the person with the terminal diagnosis of Alzheimer’s disease but without life-sustaining treatments or technologies to withhold or withdraw. As Margaret Battin writes in the current issue of the Hastings Center Report, our legal and ethical consensus has evolved around treatment refusal and the relief of pain and symptoms, but not explicitly around support for how an individual may want to die. For a person confronting dementia, asking what he or she wants at the end of life in terms of treatments for other conditions does not get at the problems this person faces in living and in dying.
In Singapore as in the U.S., families are the default care system, especially during the long trajectory of frailty and dementia. Singaporean health care professionals emphasized the fragility of home-based caregiving systems that depend on low-wage, live-in foreign domestic workers (about 1 in 5 residents of Singapore is a foreign worker) who may be overwhelmed by care problems they cannot resolve, or risk losing their jobs if they speak up about needs that cannot be safely managed at home.
A unique feature about Singapore is that 85 percent of the population lives in public housing. For most citizens, home is a Housing Development Board (HDB) flat served by public transportation, with amenities planned and built into or near the HDB “block.” This means that services needed in an aging society, from the installation of grab bars in bathrooms, to adult day care centers with hours that align with family caregivers’ work and commuting schedules, to residential care facilities that, if not “home,” are not far from home, can potentially be knit into neighborhoods to a much greater extent in Singapore than in other societies. NIMBY, however, is a reality: Singaporeans who are not (yet) caregivers do not necessarily value seeing an adult day care center close to home.
Once we acknowledge that we live in an aging society, what are some of the ways in which we – as members of the public, as health care professionals, or as policy makers – should begin to think differently, to develop our social values so they truly encompass the aging and those who care for them? Some of the other insights from our discussions included the need to help laypersons gain a basic grasp of how a person with a thought disorder such as progressive dementia thinks; how they may behave due to cognitive changes and environmental factors; and what people who do not have this condition can do, as good fellow citizens, to support them.
Theories of care transitions frame the movement of patients between health care settings, through handoffs, transfers, discharges, and case management as its own health care setting in which patients can be helped or harmed. This boundary-crossing setting does not fit neatly into professional, clinical, or organizational ethics. What happens to people and their families during care transitions and what choices they are offered are so heavily dependent on how an aging society has chosen to allocate its resources that, as one physician reminded us, “We need values before ethics.”
Nancy Berlinger is a research scholar at The Hastings Center. The Singapore Casebook Project: Care Transitions is directed by Jacqueline Chin of the Centre for Biomedical Ethics of the Yong Loo Lin Medical School at the National University of Singapore and is funded by the Lien Foundation. The project team includes Michael Gusmano of The Hastings Center and Michael Dunn of the Ethox Centre at the University of Oxford.