Carol Levine

When the Caregiver Needs Care: The Plight of Vulnerable Caregivers

OBJECTIVES This study examined the characteristics, activities, and challenges of high-risk informal caregivers. METHODS Telephone interviews were conducted with a nationally representative cross-section of 1002 informal caregivers. Vulnerable caregivers with poor health or a serious health condition were compared with nonvulnerable caregivers. RESULTS Thirty-six percent of caregivers were vulnerable. Compared with nonvulnerable caregivers, vulnerable caregivers were more likely to have difficulty providing care, to provide higher-intensity care, to report that their physical health had suffered since becoming a caregiver, to be aged 65 years or older, to be married, and to have less than 12 years of education. CONCLUSIONS Reliance on informal caregivers without considering the caregivers ability to provide care can create a stressful and potentially unsafe environment for the caregiver and the care recipient.

The limitations of "vulnerability" as a protection for human research participants.

Vulnerability is one of the least examined concepts in research ethics. Vulnerability was linked in the Belmont Report to questions of justice in the selection of subjects. Regulations and policy documents regarding the ethical conduct of research have focused on vulnerability in terms of limitations of the capacity to provide informed consent. Other interpretations of vulnerability have emphasized unequal power relationships between politically and economically disadvantaged groups and investigators or sponsors. So many groups are now considered to be vulnerable in the context of research, particularly international research, that the concept has lost force. In addition, classifying groups as vulnerable not only stereotypes them, but also may not reliably protect many individuals from harm. Certain individuals require ongoing protections of the kind already established in law and regulation, but attention must also be focused on characteristics of the research protocol and environment that present ethical challenges.

HIV and childbearing.1. Uncertain risks and bitter realities: the reproductive choices of HIV-infected women.

Although most babies born to women with HIV will not develop AIDS, many health professionals and segments of the public object when these women will not forgo pregnancy. Such a view fails to consider fully the cultural, political, and socioeconomic contexts in which seropositive women make reproductive choices. HIV infection is only one of many conditions of chronic disease that can be passed from a woman to her fetus, and should not be singled out as a target for coercive policies. Rather, government and society have an obligation to empower women to protect themselves against HIV infection in the first place, and to offer them options for self-esteem and achievement independent of reproduction.

Hands On/Hands Off: Why Health Care Professionals Depend on Families but Keep Them at Arm's Length

The authors assert that a system that requires ever greater direct and indirect participation from families must change the negative presumption that families equal trouble to one that acknowledges legitimate family interests in decision making and care delivery and treats families as partners in caregiving.

Has AIDS changed the ethics of human subjects research

Jay Katz has been a pioneer in exploring the ethics of human subjects research. We are all the more grateful because he has given us a map of the landmarks along the path of what he has called his “personal odyssey.” That intellectual journey, from the horrors of Auschwia to the callous disregard of human rights in the Tuskcgee syphilis study, can serve as a guide to us today as we attempt to measure and direct the impact of AIDS on the ethics and regulation of research.’ Professor Kaa’s account of his odyssey begins with the sources of his concern. At Yale Law School in ig66, with his colleague Richard Donnelly, he began teaching what was probably the first semester-long seminar on human experimentation. In preparation he read for the first time the trial transcripts of the Nuremberg proccedings against the Nazi physicians. “I had lost most of my cousins, aunts, and uncles in the Holocaust,” he writes. “How many of them, I wondered, had been condemned to participation in these experiments?” His journey coincided with that of his former teacher at Harvard Medical School, Dr. Henry Knowles Ekccher. Dr. Beecher’s now-classic and then-courageous article, published in rhc New Engkund journul ofMedkine in 1966, charged that

Dealing With the Long-Term Social Implications of Research

Biomedical and behavioral research may affect strongly held social values and thereby create significant controversy over whether such research should be permitted in the first place. Institutional review boards (IRBs) responsible for protecting the rights and welfare of participants in research are sometimes faced with review of protocols that have significant implications for social policy and the potential for negative social consequences. Although IRB members often raise concerns about potential long-term social implications in protocol review, federal regulations strongly discourage IRBs from considering them in their decisions. Yet IRBs often do consider the social implications of research protocols and sometimes create significant delays in initiating or even prevent such research. The social implications of research are important topics for public scrutiny and professional discussion. This article examines the reasons that the federal regulations preclude IRBs from assessing the social risks of research, and examines alternative approaches that have been used with varying success by national advisory groups to provide such guidance. The article concludes with recommendations for characteristics of a national advisory group that could successfully fulfill this need, including sustainability, independence, diverse and relevant expertise, and public transparency.

Closing the Home Care Case: Clinicians’ Perspectives on Family Caregiving

Focus groups revealed five inherent conflicts that affect home health care clinicians’ interactions with family caregivers: (a) Services often depend on caregivers’ participation, but the home care system does not give them formal status or consideration; (b) clinicians must balance competing priorities within a short time frame; (c) clinicians recognize that families have unmet emotional and training needs, but benefits are not designed to address them; (d) clinicians face conflicting professional roles as patient advocates and service gatekeepers; and (e) agencies reserve social work services, a key to caregiver access to community resources, for their most difficult cases. Building a more rational system will involve raising awareness about the system’s limitation, providing more training and support for caregivers and the professionals who interact with them, and aligning financial incentives with the realities of what it takes to prepare caregivers to care for patients with complex needs when formal services end.

The Lost Art of Caring

I began to read “The Lost Art of Caring” on an airplane. Having left my quadriplegic, brain-damaged husband at home with a home care attendant, I was on my way to rural upstate New York to take my mother, who had been recently diagnosed with advanced colon cancer, to the doctor for a follow-up visit. If caring has really been lost, I thought, a fair amount of it seems to have turned up in my corner. At the doctor’s office, the Iraqi-American surgeon spoke gently and directly to my older Jewish mother, answered my questions forthrightly, and promised both of us that he was always available if we needed him. Again, I wondered: Is the art of caring really lost? Or has it just been overshadowed by probably more-numerous and certainly more-memorable examples of indifference, insensitivity, and callousness? The editors state that they chose the term “caring” rather than “care” or “caregiving” to “focus on the humane and palliative aspects of health care that contribute to the individual’s quality of life.” They define the elements of caring as “compassion, listening, empathy, counseling, support, and giving of time and oneself.” Although this distinction sounds appealing at first, it soon loses conceptual rigor; even the various authors use the term in different ways. “Caring” in health care rarely exists independently of “care” or “caregiving.” Even the most inconsequential interaction between a healthcare professional or paraprofessional and a patient or family member conveys a “caring” or “uncaring” attitude. Cluff and Binstock believe that caring has been so devalued and marginalized in the practice and politics of health care that it can justifiably be called “lost,” and they have assembled a diverse collection of essays to make their case. They divide the contributions, all by distinguished authors, into three sections: caring and the population in need of it, the provision of caring, and assessments of caring. Looking at the contents in another framework, the essays can loosely be divided into two types, corresponding to the professional backgrounds of the editors. Leighton E. Cluff is a physician and former president of the Robert Wood Johnson Foundation. One group of essays—notably those by Daniel Callahan, Eric J. Cassell, Joel D. Howell, and Mathy Mezey and Claire Fagin—eloquently mourn the loss of the traditional physician-patient or nurse-patient relationship. Robert H. Binstock is a political scientist and professor of aging, health, and society at Case Western Reserve University. The second group of essays—for example, by Robyn I. Stone, Linda K. George, and Binstock— describe the panoply of bureaucracies, programs, and politics that have imposed technocratic values of efficiency, predictability, and frugality on the human interactions between people in need of caring and their carers. In addition, the book contains a helpful background essay by A. E. Benjamin and Leighton Cluff on the demography of people with chronic illness and disabilities and a valuable essay by the late Alvan R. Feinstein on ways to evaluate the success of caring. The subtitle of the book is “A Challenge to Health Professionals, Families, Communities, and Society.” Although several authors mention in passing that families provide most of the caring (and, they might have pointed out, the caregiving as well) for disabled and chronically ill people, only one chapter takes up families’ challenges directly. This chapter, by Burton V. Reifler and Nancy J. Cox, focuses on a special population of people with severe and persistent mental illness. In this group they include people with Alzheimer’s disease and dementia, a questionable linkage, given the many differences in the populations and needs for care. Family caregivers of the seriously mentally ill endure or are rewarded with “endless caring,” and the authors make their needs clear. Nevertheless, making one part of the family caregiving spectrum stand for the whole leaves out much of the story. Stone’s chapter on homeand community-based care begins with “the bold truth that home care and family care are not synonymous with caring.” She clearly understands some of the problems faced by family caregivers, yet one might conclude from this chapter that family caregivers are, albeit unintentionally, poor substitutes for paid carers. In fact, the editors’ summary states, “As Robyn Stone notes . . . family care is . . . often filled with conflict and tension, even under the best of circumstances. . . . Elder abuse and neglect by a family caregiver is far from uncommon.” True enough, although the same might be said From the Families and Health Care Project, United Hospital Fund, New York, New York.

Closing the Home Care Case: Home Health Aides’ Perspectives on Family Caregiving

A series of focus groups with home health aides experienced in caring for patients with stroke or brain injury provided insight into how they experience their work and their relationship to family caregivers. Two issues merit more attention. First, aides reported that they do not always have all of the information, including diagnosis or previous history, which they need to provide appropriate care. Second, aides said they often receive little advance notice about when the case would close. Abrupt transitions are hard for aides, families, and patients who have often built up a good relationship. Agencies should establish better lines of communication for relevant information, correct misunderstandings about privacy rules, provide additional guidance about how to respond to caregivers’ questions, and provide adequate time for closure.

Public Health Imperative of the 21st Century: Innovations in Palliative Care Systems, Services, and Supports to Improve Health and Well-Being of Older Americans

A primary aim of federal aging and health policy must be promoting innovations in palliative care systems, services, and supports that improve the experience of growing old in America. Older adults must contend today with increasing burden over the life course often as the result of life-limiting chronic pain and chronic illnesses as well as social and economic factors beyond their control. These burdens are frequently shared with unpaid family caregivers who provide significant uncompensated medical care and social support to their loved ones. Enjoyment of the highest attainable standard of physical and mental health, recognized as a fundamental human right under international law, remains a goal for all older adults and encompasses the right to palliative care. For many older Americans, especially vulnerable subgroups who face health and pain disparities, however, this goal remains elusive. A public health strategy for implementing palliative care policy interventions will help to build age-friendly environments, assure the availability and accessibility of palliative systems of care, essential medicines, and an adequate generalist-level workforce, and sustain diffusion of innovation across all levels of health and social provision. The 2015 White House Conference on Aging must make these realignments a policy priority in order to foster social and economic development for all older Americans.