- BIOETHICS FORUM ESSAY
Singapore Case Notes: Reframing “Family” Caregiving in the World’s Fastest Aging Society
A previous post described the Singapore Casebook project, a collaboration among the Centre for Biomedical Ethics at the National University of Singapore, The Hastings Center, and the Ethox Centre at the University of Oxford. The first edition of this online casebook, Making Difficult Decisions with Patients and Families, is widely used in undergraduate and professional health care education in Singapore and is available to the public and to professionals and scholars in other countries. Our team is now developing the second edition, Care Transitions in Aging Societies.
Our recent project meetings in Singapore coincided with “the Haze,” the transnational smog produced by profitable slash-and-burn land clearing in Indonesia coupled with climate change. Discussions about the public health consequences of the Haze were the backdrop to a week of site visits across this densely populated city-state of 5.5 million people, as we sought to better understand how care transitions worked – or failed – in the world’s fastest aging society.
Again and again, we heard versions of the problem common to all such societies: what aging people need so often confounds familiar categories such as “medical” versus “social,” or “institutional” versus “family,” especially during the long trajectory of frailty and dementia. Geriatricians described the challenge of respecting the preferences of people who want remain independent but whose progressing dementia compromised their safety in and outside the home. Geriatric social workers, rehabilitation specialists, and health educators described efforts to improve hospital-to-home discharges through investments in caregiver training and closer attention to signs of caregiver burnout.
We also saw innovative uses of Singapore’s ubiquitous public housing – the multistory HDB block, home to 85 percent of citizens – to bring services for aging residents into neighborhoods. The ground floors of some HDB blocks house centers for adult day care, rehabilitation, or social and recreational activities. One rehab center, supported by a nonprofit organization, doubled as a community gym: 80-somethings working with physical therapists, 20-somethings working out on the treadmills.
Another nonprofit, AWWA, has gone even further, adapting three floors of an HDB block to create assisted living for low-income elderly people without families. The director of this “senior community home” described the challenges of sustaining a care setting in which health care and social services are integrated (and in which multiple public-sector agencies are involved), and that, for residents, is a good place to live, with a “kampung [village] spirit.” Practical challenges include how to keep an environment safe and stable for residents with dementia while maintaining a home-like feeling, and how to encourage members of the surrounding community – the hawkers, shop keepers, bus drivers, and working and middle class apartment dwellers – to keep a friendly eye on the elders. In AWWA’s view, a community home should also confront the problem of boredom among aging people with actual or perceived physical limitations, by offering choices (eating meals communally, or going out for a meal or coffee), and by “daring” residents to have goals and helping them to plan and do things that matter to them: taking a day trip to a rugged nearby island; cultivating a fruit and vegetable garden. This is a unique program, but because it makes use of the most common type of urban housing, retrofitted for dormitory-style apartments and communal spaces for meals and recreation, it may prove scalable to other neighborhoods, and perhaps other cities.
As a category, “family caregiving” is ethically and structurally problematic. In the push to discharge a patient home or make a home care plan work, conflicts between the interests of a person in need of care and the interests of family members may be overlooked or ignored. When caregiving responsibilities and costs are shifted from professionals and institutions to families without adequate support for families, this creates burdens that are hard to challenge and may become overwhelming.
Family caregiving may also encompass workers whose interests are obscured by a focus on family members or family values. Noncitizen workers, usually female, are a huge part of the workforce in Singapore’s nursing homes and in home care. As part of a hospital-to-home transition, a patient’s family will often hire a live-in domestic worker from Indonesia, the Philippines, Myanmar, or Sri Lanka for hands-on caregiving work. These workers experience the isolation, fatigue, and burnout associated with “family” caregiving. They may experience additional stresses due to differences of language, culture, and social status between themselves and their employers, plus the frequent expectation that they will do housework and child care.
Our discussions with a range of professionals suggest that Singapore’s health care sector recognizes that training and other resources aimed at “caregivers” need to be accessible to domestic workers as well as to family members, and that, ideally, family members and domestic care workers should participate in training together. Training designed for domestic workers specifically varies widely; a new four-day, government-sponsored training program was launched in September, incentivized through a subsidy to families who employ trained workers.
Beyond training, health care and social service professionals acknowledge the basic problem of relying on a live-in worker in a role traditionally perceived as a “maid” or “helper” to ensure the success of a hospital discharge plan. During a lively panel discussion hosted by the service and advocacy organization Transient Workers Count Too (TWC2), our team had an opportunity to talk with a diverse audience – ranging from domestic workers and advocates, to researchers, clinicians, and civil servants – about the precarious position of these caregivers. Grappling with the weighty responsibility of meeting the needs of a frail elder within an ill-defined job scope and few social supports is the common situation of migrant domestic care workers in aging societies in Asia.Counting the true cost of health and social care and discerning the social values that can sustain aging societies will need to consider the interests of all caregivers.
Nancy Berlinger and Michael K. Gusmano are research scholars at The Hastings Center. Jacqueline Chin is Associate Professor at the Centre for Biomedical Ethics of the Yong Loo Lin Medical School at the National University of Singapore. Michael Dunn is Director of Undergraduate Medical Ethics and Law Education at the Ethox Centre of the University of Oxford. The Singapore Casebook Project: Care Transitions is directed by Jacqueline Chin and is funded by the Lien Foundation.