LGBTQ-Inclusive Hospice and Palliative Care

LGBTQ-INCLUSIVE HOSPICE
AND PALLIATIVE CARE
A Practical Guide to Transforming Professional Practice

By
Kimberly D. Acquaviva

250 pages
Paperback, $25.00 / £19.00 ISBN: 9781939594143
Hardcover, $60.00 / £44.00 ISBN: 9781939594150
E-book, $19.99 / £15.00 ISBN: 9781939594167

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DESCRIPTION

This is the only handbook for hospice and palliative care professionals looking to enhance their care delivery or their programs with LGBTQ-inclusive care. Anchored in the evidence, extensively referenced, and written in clear, easy-to-understand language, LGBTQ-Inclusive Hospice and Palliative Care provides clear, actionable strategies for hospice and palliative physicians, nurses,
social workers, counselors, and chaplains.
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TABLE OF CONTENTS

ACKNOWLEDGMENTS

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1. Self-Awareness and CommunicationFree Chapter
Providing inclusive care to patients with chronic or life-limiting illnesses requires self-awareness — an awareness of one’s attitudes, beliefs, and emotions and the ways in which they shape interactions and patient care. For hospice and palliative care professionals, self-awareness should be an ongoing process rather than a static state of existence to strive toward. This chapter describes a seven-step process that hospice and palliative care professionals can follow to improve their ability to provide inclusive, nonjudgmental care when planning, engaging in, and reflecting on patient interactions. In addition, the chapter describes verbal and nonverbal communication techniques to facilitate LGBTQ-inclusive care.

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2. Sex, Gender, Sexual Orientation, Behavior, and Health

Providing LGBTQ-inclusive care requires an understanding of several key concepts: sex, gender, gender identity, gender expression or presentation, gender discordance, gender nonconformity, gender dysphoria, sexual orientation, sexual behavior, sexuality, and sexual health. This chapter explains how these concepts relate to one another and their relevance in the palliative care and hospice setting. In addition, the chapter describes a two-step process for asking patients about their assigned birth sex and true gender and explains the use of gender-neutral pronouns.

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3. Understanding Attitudes and Access to Care

An important aspect of providing LGBTQ-inclusive care is understanding why some LGBTQ people may be reluctant either to seek care in the first place or to share with you that they are lesbian, gay, bisexual, transgender, gender nonconforming, queer, or questioning. Historically, disclosing one’s status as an LGBTQ person has often come with a high price — and may still do so today. This chapter explains why, given the historical and contemporary contexts within which LGBTQ people live, it’s not surprising that some LGBTQ patients and families are reluctant to seek care. The chapter describes three kinds of barriers to palliative care and hospice care (perceptual, financial, and institutional) and offers a two-pronged approach to addressing barriers to care.

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4. The History and Physical Examination

To elicit a complete and accurate history from a patient, palliative care and hospice professionals need to establish rapport and communicate a genuine openness to hearing the patient’s answers to their questions. This chapter describes a new LGBTQ-inclusive approach to taking a comprehensive history that places the primary emphasis on the patient as person. Pathophysiology, pharmacology, and differential diagnoses are beyond the scope of LGBTQ-Inclusive Hospice and Palliative Care; this chapter provides information to supplement readers’ existing clinical expertise and knowledge.

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5. Shared Decision Making and Family Dynamics

Shared decision making is one of the cornerstones of quality palliative and hospice care, and it is anchored in the ethical principles of autonomy and self-determination. At its core, shared decision making is complex, and it may be made more challenging by complicated family dynamics and medically and ethically complex clinical situations. This chapter explains how to coordinate and facilitate a family meeting focused on shared decision making, how to use shared decision making for decisions surrounding palliative sedation, and how family dynamics may play a role in the shared decision- making process.

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6. Care Planning and Coordination

In palliative care and hospice care, the patient and family (as defined by the patient) are the unit of care, and the plan of care is focused on the patient’s and family’s goals of care. Helping patients and families identify their own goals requires both skill and a commitment to avoiding the temptation to use the “drop-down menu” goals of care provided in many electronic health records. This chapter explains how to help patients and families identify their own unique goals, how to use a set of key questions to refocus interdisciplinary/ interprofessional team meetings on patient- and family-centered outcomes of care, and how to conduct an environmental and safety risk assessment.

In Chapter 5 we explored the concept and practice of shared decision making. While it may seem odd to place the chapter about setting goals of care after the chapter on shared decision making, this sequence is intentional. Your work with patients and families is not strictly linear or sequential — care planning and shared decision making occur contemporaneously; the two concepts are inextricably intertwined. However, having an understanding of shared decision making is foundational to understanding care planning and coordination.

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7. Ethical and Legal Issues

Palliative-care and hospice professionals have a duty to the patients and families they work with — of all sexual orienta- tions, gender identities, and gender expressions — to adhere to a core set of ethical principles in carrying out their work. These ethical principles compel them to honor the autonomy of the people they serve. In health care, autonomy is “protected” through the advance care planning process. Surgeon and author Atul Gawande writes of the true meaning of autonomy in Being Mortal: “He moved his line in the sand. This is what it means to have autonomy—you may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them” (Gawande 2014). This chapter provides an overview of the ethical principles that guide practice, the elements of advance care planning, and the legal issues that may affect LGBTQ individuals in particularas they navigate serious and life-threatening illness and seek to remain the authors of their own lives.

None of the following information is intended to constitute legal advice, nor is it my intent to encourage you to provide legal advice to your patients and their families. The information in this chapter is designed to make you aware of some of the ethical and legal issues that LGBTQ individuals and their families may encounter so that you can provide support and guidance within the scope of your professional discipline. For a deeper dive into ethics as they relate to health care delivery, I highly recommend Beauchamp and Childress’s Principles of Biomedical Ethics (2013).

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8. Patient and Family Education and Advocacy

Patient and family education is an essential part of delivering quality care (Institute of Medicine 2013). Education is an integral part of the work that advanced practice registered nurses, physicians, registered nurses, chaplains, social workers, and counselors do with patients and families. This chapter provides palliative care and hospice professionals with specific, actionable strategies for teaching patients and families (including but not limited to those who are LGBTQ) about patient care, end-stage disease progression, pain and symptom management, medication management, the disposal of supplies, and signs and symptoms of imminent death.

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9. Psychosocial and Spiritual Issues

Assessing and addressing psychosocial and spiritual issues is as important to the delivery of quality care as assessing and addressing pain and other physical symptoms. This chapter explains the developmental tasks of life completion and life closure as well as the roles that despair, hope, and meaning play in the context of advanced illness. The chapter describes LGBTQ-inclusive assessment skills and supportive techniques for addressing psychosocial and spiritual issues, and explains how a spiritual/existential history and a spiritual/existential assessment differ. Finally, the chapter examines the ways in which the members of the interdisciplinary/interprofessional team collaborate to support the patient and family in achieving their goals for care in the psychosocial and spiritual/ existential domains.

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10. Ensuring Institutional Inclusiveness

The first nine chapters of LGBTQ-Inclusive Hospice and Palliative Care describe how individual health care providers can deliver high-quality palliative care and hospice care that is inclusive of LGBTQ individuals and their families. For palliative care and hospice professionals to have the best opportunity to put this knowledge into practice, however, they need to take a few steps at the institutional level to ensure that LGBTQ patients and their families feel welcome and safe coming to them for care. The care that individual health care professionals provide to patients and families is a bit like a clinic on an offshore island. The care provided on that island may be the best in the world, but if patients and families can’t reach it, those health care professionals lose out on the opportunity to serve them. This chapter explains how to assess the structural integrity of an institution’s bridge to LGBTQ patients, and how to extend and strengthen that bridge to reach, welcome, and serve LGBTQ individuals and their families.

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