Timothy Kirk

This chapter explains the interrelationship between a clearly formulated philosophy of hospice care and the possibility of ethical reflection and analysis in hospice care. In so doing, it proposes that the reader consider the care given by hospices to be a special kind of practice that contains and infers its own ethics. Terminal care given by hospices is also situated in a larger society, and therefore its internal values interact with a broad set of social values; the practice of hospice care interacts with many other social practices, some that support hospice and some that are in tension with it. This situation of internal ethical coherence within a context of social and cultural plurality provides an important orientation and framework for ethical decision making in, and about, hospice care.

This chapter offers an explanation of, and approach to, respecting confidentiality as an ethical obligation in the practice of hospice and palliative medicine. Understood in the context of coincident ethical obligations to maximize clinical benefit, avoid preventable harm, and restore moral agency, respecting confidentiality is embedded in the most basic philosophical precepts that define hospice and palliative care. How to respect confidentiality in everyday practice, however, can be a matter of unusual complexity. As such, following a brief conceptual framework, the chapter explores ways to employ the framework in the service of patients and families in clinical practice. While various regions and nationalities will have legal and regulatory requirements informing the definition and practice of respecting confidentiality, this chapter focuses instead on respecting confidentiality as an ethical value. Readers are encouraged to supplement the content of this chapter with the relevant requirements that apply in their practice location.

Communication is a key mediating variable in achieving the primary goal of palliative care: optimizing quality of life by reducing suffering in patients and families experiencing serious and life-limiting illness. Through analysis of its conceptual foundation and internal values, this chapter demonstrates that palliative care is an inherently moral practice, seeking to ameliorate suffering by restoring and supporting the moral agency of patients and families. Because therapeutic communication is a necessary condition for achieving this goal, it constitutes a core ethical obligation of palliative care providers and organizations. Ethical communication among healthcare providers, and between providers, patients, and family members, can be considered a form of care, subject to the same ethical norms that pertain to all clinical care: respect personhood, minimize harm, and maximize benefit. Using the concepts of sensitivity, truthfulness, confidentiality, and deliberation, a framework for ethical communication is presented. Because an excessive focus on communication outcomes often diverts attention away from the communication process itself, raising the risk for confrontation and stalemate, the ethical framework presented here emphasizes the importance of process, suggesting that communication processes are ethically significant apart from the outcomes they may produce.

Key Points ◆ The advanced practice registered nurse (APRN) is uniquely trained and situated within palliative care teams to navigate ethical discussions. ◆ Professional codes of ethics, bioethical principles, communication principles, and support of moral agency are the foundation for such discussions. ◆ An ethical framework built on the cornerstone principles of advocacy, clinical sensitivity, truthfulness, and accommodation recommends that process rather than outcome is the appropriate focus when navigating ethical discussions.

Key Points ◆ Nurses are ideally suited to advocate for patients and families due to their professional orientation, education, and role in patient care. ◆ Six components constitute a model of advocacy in palliative nursing: clinical competency, relational care, communication skills, bio-psycho-social-spiritual orientation, interdisciplinary collaboration, and a combination of confidence and humility. ◆ Nurse advocates respond to the strengths as well as the vulnerabilities of patients and families, building empowering relationships to support care decisions that respect the values and personhood of patients. ◆ Seven functional elements facilitate effective advocacy in palliative nursing: specific documentation, careful observation of patient and family interactions, assessing understanding, building rapport, eliciting care preferences, privileging patient values and preferences, teaching and sharing information. ◆ Advocacy is an approach to palliative nursing care, one which emphasizes careful attention to process over outcome.

Advance directives are often used to help patients articulate their end-of-life treatment preferences and guide proxy decision makers in making health care decisions when patients cannot. This case study and commentary puts forth a situation in which a palliative care consultation team encountered a patient with an advance directive that instructed her proxy decision maker to consider estate tax implications when making end-of-life decisions. Following presentation of the case, the authors focus on two ethical issues: 1) the appropriateness of considering patients' financial goals and values in medical decision making and 2) whether certain kinds of patient values should be considered more or less relevant than others as reasons for expressed treatment preferences. Clinicians are encouraged to accept a wide range of patient values as relevant to the clinical decision-making process and to balance the influence of those values with more traditional notions of clinical harm and benefit.

Understanding, shared meaning, and mutual trust lie at the heart of the therapeutic nurse–patient relationship. This article introduces the concept of clinical intimacy by applying the interpersonal process model of intimacy to the nurse–patient relationship. The distinction between complementary and reciprocal behaviours, and between intimate interactions and intimate relationships, addresses background concerns about the appropriateness of intimacy in nursing relationships. The mutual construction of meaning in the interactive process between nurses and patients is seen to lie at the heart of clinical intimacy as a hermeneutic enterprise. Intimacy is distinguished from empathy based on intentionality and the status and location of meaning. Reasons for continued investigation into clinical intimacy as an explanatory model for nursing as a hermeneutic practice are presented.

I have been reading Nursing Philosophy since its inception in 2000. Indeed, the journal has played an important role in the development of my thinking—from a doctoral student in philosophy to the pres‐ent day. The invitation to write an article commentary as an editorial board member presented an opportunity to look over previous issues (including well‐worn paper copies from the years before it became a digital‐only publication), a task I have relished over the first months of 2019. Despite my long relationship with the journal, selecting a focus for my commentary was not difficult; two articles on spiritual‐ity in nursing, by John Paley (2008a) and Barb Pesut (2008a), respec‐tively, are touchstones to which I have returned many times in the 11 years since their publication. In this commentary, I present a brief summary of the articles followed by a reflection on their value for nurses and philosophers of nursing.

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.

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.

The Family Health Care Decisions Act (FHCDA) was adopted by New York State in September 2010, after first being introduced in the Assembly 18 years prior. The FHCDA establishes the authority of a patient’s family member or close friend (referred to as a “Surrogate”) to make health care decisions when the patient lacks decision-making capacity, has not executed a proxy appointing a health care agent, and does not have a guardian. A Surrogate is authorized to make health care decisions, including to direct the withdrawal or withholding of life sustaining treatment, provided that conditions set forth in the FHCDA are met. When adopted, the FHCDA allowed Surrogate decision-making only for patients who were receiving services in a hospital or residential health care facility. In 2011, the FHCDA was amended to allow Surrogate decision-making for patients who were receiving hospice care, where such authority was greatly needed. Until 2015, one category of patients was unable to fully engage the benefits of the 2011 amendment: those patients often referred to as “isolated” or “unbefriended” patients. A 2015 amendment to the FHCDA provides a process through which physicians, acting under the standards that apply to Surrogates, can elect the hospice benefit and consent to a hospice plan of care on behalf of isolated patients. This article explains the context and content of the amendment, and presents considerations gleaned from our experience consulting with health care provider organizations on its implementation.

There is a growing movement to increase access to palliative care by declaring it a human right. Calls for such a right—in the form of articles in the healthcare literature and pleas to the United Nations and World Health Organization—rarely define crucial concepts involved in such a declaration, in particular ‘palliative care’ and ‘human right’. This paper explores how such concepts might be more fully developed, the difficulties in using a human rights approach to promote palliative care, and the relevance of such an enterprise to public health ethics

This book identifies and explores ethical themes in the structure and delivery of hospice care in the United States. As the fastest growing sector in the US healthcare system, in which over forty percent of patients who die each year receive care in their final weeks of life, hospice care presents complex ethical opportunities and challenges for patients, families, clinicians, and administrators. Thirteen original chapters, written by seventeen hospice experts, offer guidance and analysis that promotes best ethical practice for hospice organizations and professionals. The book addresses common questions and issues faced by those who work in hospice care, a dynamic movement that, in only 30 years, has shifted from an all-volunteer care alternative at the end of life to a highly regulated industry in which over half of providers are for-profit enterprises in a very competitive health care marketplace. The chapters show how the history and philosophy of hospice care can inform the values and composition of care teams, the operations of inpatient units, and access to care for pediatric and long-term care populations. Various chapters propose frameworks for deliberating organizational approaches to ethical questions in changing regulatory and legal environments, including a model for hospice ethics committees. The final chapter outlines an expanded model of hospice as a community based, interdisciplinary, and holistic form of palliative care emphasizing advance planning, case management, and a flexible spectrum of services. This model can serve as a centrepiece for a new quality of life and social support approach, not only to terminal care, but also long-term care during the later stages of chronic illness and fraility.

This dissertation articulates the conceptual foundation for, and moral significance of, clinical intimacy in nurse-patient relationships. American bioethics has embraced the paradigm of professionalism in characterizing appropriate relationships between healthcare providers and their patients. Contrary to other professional-client relationships, however, the fundamental qualities of nurse-patient relationships frequently oblige nurses and their patients to work together in ways not adequately captured by the professionalism paradigm. Clinical intimacy is put forth as a form of co-meaning making between nurses as their patients, a phenomenon that is revealed when one shifts from a paradigm of professionalism to a paradigm of nurses and patients encountering each other already in relationship. The reconstruction of meaning, and the structures via which patients create and understanding meaning, is argued to be a central moral obligation in certain nursing relationships with patients who have experienced severe and unexpected trauma, disability, and illness

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?