Faculty Bibliography

Managing risk is a necessary component of living a full moral life. Evaluating which risks are acceptable, for what reasons, in what conditions, and then taking actions based on those evaluations, are exercises of moral agency-of intentionally actualizing values that shape an embodied personhood. Health-care institutions in the United States are risk averse, designed to manage risk in ways that can impede the full exercise of patients' moral agency. Home hospice care, conceived as an alternative to institutionally based end-of-life care and driven explicitly by patient goals and values, would seem to be an environment in which patients are empowered to express the full spectrum of their personhood-including making decisions about risk consistent with their values. While home hospice patients have more discretion over risk than patients receiving care in institutions like hospitals and nursing homes, efforts to limit that discretion abound. Such limits can be experienced by patients as failures to recognize their dignity as persons, even while those limits are perceived by others as necessary to preserve that very dignity by keeping them safe. This article uses a running case study to reconceptualize "risk" in home hospice care by (1) challenging the clinical assumption that physical harm is the most important lens through which to view risk, and (2) presenting and applying the concept of positive risk-taking as one way to develop the concept and assessment of risk more fully.

It is not uncommon for hospice admission nurses to receive requests from loved ones to withhold information from patients about their diagnosis or prognosis. Such requests may occur in the context of similar requests having previously been honored by other, nonhospice care teams. This article explores the ethical questions raised by such requests and the motivations behind them. Following, it offers ways to engage requests for nondisclosure that honor ethical obligations to patients and families in a manner consistent with the hospice philosophy of care. The principles of truthfulness, sensitivity, and beneficence are introduced, and a framework using those principles to respond to requests for nondisclosure is proposed.

Mrs. F, seventy-five, was diagnosed with Alzheimer's. She and her spouse often discussed how to handle the progression of the disease. She was adamant about not coming to the point where she would be unable to recognize herself, her husband, or their son and daughter. The manner she chose was voluntarily stopping eating and drinking (VSED), and she chose a specific date on which to carry out her plan. She asked her husband to promise, should she ever waver and request nutrition or hydration, to remind her of the reasons she had chosen for pursuing this path. Mrs. F's ability to function was beginning to wax and wane. Sometimes she was her old self, and sometimes she had no recollection of her past identity. After she voluntarily stopped eating and drinking, the couple's promise created a dilemma for her professional caregivers. She asked for food and drink. Her husband and family reminded her of the reasons she had chosen VSED: "Remember, you didn't want to live in a nursing home, and you didn't want us to be responsible for caring for you at home. You believe that stopping eating and drinking will allow you to die with dignity." Although they also asked Mrs. F, "What do you want to do?" the family asked the professional caregivers to respect her original choice to stop eating and drinking. Mrs. F still evidenced decision-making capacity but often did not recall having chosen VSED. She again requested food and drink, from family and the professional caregivers. Can VSED be carried out for a patient whose advanced dementia makes disciplined voluntary action difficult?

Home hospice clinicians frequently care for patients who wish to remain in their homes, even when doing so poses a risk to patients' safety. Through the use of a running case study, this article introduces readers to the concepts of (a) the dignity of risk and (b) accommodation, arguing that such concepts can be used as ethical principles to help guide teams, patients, and family members in developing plans of care for such patients. As regulatory requirements dictate that US hospice nurses coordinate the care of home hospice patients, empowering such nurses to develop the capacity to integrate ethical decision making into their practice and engage their organization's ethics resources when struggling to balance competing care values supports sound clinical practice.