When the Caregiver is Also a Bioethicist and Clinician - Ethical Dimensions of Caregiving
A daughter who cared for her mother with dementia. A wife who cared for her husband with cancer. And a son who cares for his father with dementia. In the 10th webinar in the Caregiving NOW series, three speakers shared their lived experiences as caregivers for a loved one.
April 19, 2023
APRIL 19, 2023
By Laura Wallace, MSN, RN
These caregivers laid bare the shared challenges faced by millions of unpaid caregivers across the nation – the delicate dance of supporting autonomy while assuming the role of decision maker, the need to advocate for a loved one in a health care system that can be unresponsive to complex, person-centered needs, and the stress of ensuring their loved one is physically, cognitively, and emotionally nurtured under the constraints of work and family obligations.
These three caregivers, connected by the intimate experience of caring for a loved one, are also clinicians and prominent bioethicists. Christine Grady, MSN, PhD, Chief of the Department of Bioethics at the Clinical Center at the National Institutes of Health, was the caregiver for her mother. Carol Taylor, PhD, RN, Professor of Medicine and Nursing and Senior Clinical Scholar at the Kennedy Institute of Ethics at Georgetown University, was the caregiver for her husband. And Jason Karlawish, MD, Professor of Medicine, Medical Ethics, and Health Policy and Neurology at Penn, is the caregiver for his father.
The three bioethicists joined moderator Connie Ulrich, PhD, RN, FAAN, to share perspectives on the ethical dimensions of caregiving that could only be gleaned by experts who have lived on both sides. “As a scholar, it’s been a very informative experience to realize aspects of what it means to be a caregiver that I hadn’t fully understood from observing from the outside, and once I experienced it, I was able to discern more fully what it means to be a caregiver and some of the difficult choices you make,” Dr. Karlawish said.
Ethical Obligations to the Caregiver
What is the clinician’s ethical obligation to the caregiver? As a clinician, Dr. Grady said, “We rely on caregivers to be partners in taking care of the people we’re responsible for, and we trust them to do that, but we don’t always pay attention to what they need in order to do it.” Dr. Taylor shared a personal caregiving experience illustrating this point, “I think of taking Bob home from the hospital, where all of a sudden he has subcutaneous injections that needed to be given once he was off his Coumadin. He has a Foley catheter, and I was literally handed printed instructions. And I wanted to cry.”
Clinicians have a moral and ethical responsibility to support the caregiver, who supports the patient. Yet, despite the monumental task caregivers are expected to do, clinicians often miss opportunities to support the caregiver, which is critical to ensure the patient experiences the best outcome possible. “If you’re going to label someone as having these various diseases and disabilities…and you will acknowledge that some of those diseases and disabilities necessitate the presence of another mind to support, you have an ethical obligation to support that now dyadic relationship and also to critique that dyadic relationship,” said Dr. Karlawish. Still, caregivers often do not receive the training to carry out the numerous, diverse tasks required, or the support to maintain their own health and wellness. Dr. Karlawish added, “That’s my worry…are we preparing caregivers, you know, for this tremendous work that they do?”
Caregiving as a Focus of Bioethics: Surrogate Decision Making, Dignity, Marginal Capacity, Justice and Moral Distress
If clinicians have an ethical obligation to caregivers, why isn’t caregiving a focus of bioethics? As Dr. Karlawish noted, caregiving is a recent concept emerging in the English language in the 1980s. Caregiving is also underrecognized and rooted within other family roles. Yet, caregiving introduces important but overlooked bioethical issues, such as surrogate decision-making, marginal capacity, dignity, justice, and moral distress.
Dr. Grady discussed the need to explore surrogate decision-making further, stating, “We don’t pay as much attention as we should to what the surrogate has to figure out, what it takes to be a decision maker.” Adding from her own experience as the caregiver and surrogate decision maker for her mother, Dr. Grady described the process of “honoring what my mother would have wanted if she could have told me with also balancing what I thought was best for her at the particular moment.”
In addition to surrogate decision-making, how do you navigate decision-making when the person cared for has marginal capacity? Bioethics is good at guiding clinicians and caregivers when a person cannot make decisions; however, the gray zone of marginal capacity can present a bioethical quandary for caregivers and require a skillful approach to navigate. Dr. Karlawish illustrated the issue of marginal capacity as a caregiver for his father, “It’s fascinating to see how I orchestrate decisions in a way that I think he’s getting his input in, not just for performance, but so that he feels good. But, on the other hand, I am very much the conductor of an orchestra, and this is not a jazz performance.”
Dr. Taylor noted a need to explore the influence of caregiving on the well-being of those cared for, particularly around the concept of dignity. Dr. Taylor drew from her personal experience as a caregiver to her husband, a man “who was always impeccably clean and modest,” who now needed help getting washed. Although ethicist Ruth Macklin famously declared 20 years ago that “dignity is a useless concept,” Dr. Taylor responded, “Try saying that to a 92-year-old cardiologist who can’t control his bowels.”
Caregiving has also emerged as an issue of justice in America. For many, a lack of adequate personal and financial resources limits support for caregivers and restricts the options for those requiring care. Solutions to unload the resource strain of caregiving, like a long-term care wage tax, have been politicized, limiting progress and leaving those with limited resources few options. “It’s a risk shared by all, and once a risk is broadly shared, all should bear the cost,” said Dr. Karlawish.
Caregivers may also experience moral distress, a concept more frequently applied to clinicians, because of the myriad of ethical decisions placed upon them. According to bioethicist and webinar moderator Dr. Ulrich, one-third of caregivers experience decisional burden, which can result in regret that lasts months or years. Dr. Karlawish spoke about the moral distress he sees as a clinician and feels in his caregiving experience, noting that moral distress arises when caregivers grapple with deciding which caregiving tasks they are willing to do.
Tangible Solutions
Although many caregiving challenges are embedded in our health care system, tangible solutions exist to improve the caregiving landscape. Some solutions, like funding for care, are considerable and require policy shifts. But others are more readily achievable for clinicians—for instance, education for clinicians on how to effectively communicate and partner with caregivers. Even changing the physical clinical environment to accommodate caregivers—such as adding an extra chair in the exam room—can have an impact and is becoming more common.
The caregiving experiences shared by Drs. Grady, Taylor, and Karlawish in this insightful and moving webinar emerged as representations of the pressing ethical issues in caregiving. Dr. Taylor reflected, “It’s a journey that I don’t think you could anticipate, and you need to find sources for your own healing and nurturing.”
Join us for the next webinar in the Caregiving NOW series on May 17, 2023, From the Margins to the Middle: Centering Caregivers in Policy and Research, a conversation with Jennifer Olsen, CEO, Rosalyn Carter Institute for Caregivers and Mary Naylor (moderator), Director of the NewCourtland Center.
