HPNA PALLIATIVE NURSING MANUALS

Social Aspects of Care Edited by

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Nessa Coyle, PhD, APRN, FAAN Consultant Palliative Care and Clinical Ethics in Oncology New York, New York

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1 Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford New York Auckland  Cape Town  Dar es Salaam  Hong Kong  Karachi Kuala Lumpur Madrid Melbourne Mexico City Nairobi New Delhi Shanghai Taipei Toronto With offices in Argentina Austria Brazil Chile Czech Republic France Greece Guatemala Hungary Italy Japan Poland Portugal Singapore South Korea Switzerland Thailand Turkey Ukraine Vietnam Oxford is a registered trademark of Oxford University Press in the UK and certain other countries. Published in the United States of America by Oxford University Press 98 Madison Avenue, New York, NY 006

© Oxford University Press 206

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All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by license, or under terms agreed with the appropriate reproduction rights organization. Inquiries concerning reproduction outside the scope of the above should be sent to the Rights Department, Oxford University Press, at the address above. You must not circulate this work in any other form and you must impose this same condition on any acquirer. Library of Congress Cataloging-in-Publication Data Social aspects of care / edited by Nessa Coyle. p. ; cm. — (HPNA palliative nursing manuals ; volume 6) Includes bibliographical references and index. ISBN 978–0–9–02443–2 (alk. paper) I.  Coyle, Nessa, editor.  II.  Series: HPNA palliative nursing manuals ; v. 6. [DNLM:  .  Hospice and Palliative Care Nursing. WY 52.3] RA000 362.7′56—dc23 2050236 This material is not intended to be, and should not be considered, a substitute for medical or other professional advice. Treatment for the conditions described in this material is highly dependent on the individual circumstances. And, while this material is designed to offer accurate information with respect to the subject matter covered and to be current as of the time it was written, research and knowledge about medical and health issues are constantly evolving and dose schedules for medications are being revised continually, with new side effects recognized and accounted for regularly. Readers must therefore always check the product information and clinical procedures with the most up-to-date published product information and data sheets provided by the manufacturers and the most recent codes of conduct and safety regulation. The publisher and the authors make no representations or warranties to readers, express or implied, as to the accuracy or completeness of this material. Without limiting the foregoing, the publisher and the authors make no representations or warranties as to the accuracy or efficacy of the drug dosages mentioned in the material. The authors and the publisher do not accept, and expressly disclaim, any responsibility for any liability, loss or risk that may be claimed or incurred as a consequence of the use and/or application of any of the contents of this material.

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Contents Preface  vii Contributors  ix . Sexuality   Marianne Matzo 2. Bereavement  25 Inge B. Corless 3. Supporting Families in Palliative Care  5 Rose Steele and Betty Davies

Patricia Berry and Julie Griffie

5. Cultural Considerations in Palliative Care  99 Polly Mazanec and Joan Panke

Appendix: Self-Assessment Test Questions  9 Nessa Coyle

Index  23

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4. Planning for the Actual Death  73

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This is the sixth volume of a new series being published by Oxford University Press in collaboration with the Hospice and Palliative Nurses Association. The intent of this series is to provide palliative care nurses with quick reference guides to each of the key domains of palliative care. Content for this series was derived primarily from the Oxford Textbook of Palliative Nursing (4th edition, 205) which is also edited by Betty Ferrell, Nessa Coyle, and Judith Paice, the editors of this series. The contributors identified in each volume are the authors of chapters in the Oxford Textbook of Palliative Nursing, from which the content was selected for this volume. The Textbook contains more extensive content and references, so users of this Palliative Nursing Series are encouraged to use the Textbook as an additional resource. We are grateful to all palliative care nurses who are contributing to the advancement of care for seriously ill patients and families. Remarkable progress has occurred over the past 30 years in this field and nurses have been central to that progress. Our hope is that this series offers an additional tool to build the care delivery system we strive for.

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Preface

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Patricia Berry, PhD, RN, ACHPN, FAAN, FPCN Professor of Nursing Director, Hartford Center of Gerontological Nursing Excellence School of Nursing Oregon Health and Science University Portland, Oregon

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Inge B. Corless, PhD, RN, FAAN Professor of Nursing MGH Institute of Health Professions Boston, Massachusetts

Betty Davies, RN, CT, PhD, FAAN Adjunct Professor and Senior Scholar School of Nursing University of Victoria Victoria, Canada Julie Griffie, RN, MSN, ACNS-BC, AOCN Manager, Nursing Practice Clinical Cancer Center Medical College of Wisconsin Froedtert Hospital Milwaukee, Wisconsin

Marianne Matzo, PhD, APRN-CNP, FPCN, FAAN Professor and Frances E. and A. Earl Ziegler Chair in Palliative Care Nursing Director of Sooner Palliative Care Institute University of Oklahoma College of Nursing Director of Survivorship and Supportive Care Center Adjunct Professor of Geriatric Medicine Peggy and Charles Stephenson Cancer Center Oklahoma City, Oklahoma Polly Mazanec, PhD, ACNP-BC, AOCN, FPCN Assistant Professor FPB School of Nursing Case Western Reserve University Cleveland, Ohio Joan T. Panke, MA, APN, ACHPN Palliative Consultant/Palliative Care NP Arlington, Virginia Rose Steele, RN, PhD Professor of Nursing York University Toronto, Ontario, Canada

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Contributors

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Chapter 

Sexuality Marianne Matzo Key Points • Sexuality is an integral part of the human experience. • Healthcare providers often overlook the sexual needs of those

receiving palliative care. • Communication, privacy, and practical solutions to physical changes

This chapter highlights sexuality as an important aspect of palliative care. Incurable illness and end-of-life care may compromise a couple’s intimacy. To prevent or minimize this, healthcare practitioners should assume a leading role in the assessment and remediation of potential or identified alterations in sexual functioning. Not all couples will be concerned about their sexual health at this point of their life together. However, if sexual health is desired, all attempts should be made to facilitate this important aspect of life. People may find that being physically close to the one they love is life affirming and comforting. As patients draw close to the end of life, their needs, hopes, and concerns remain intact as in any other stage of their life. Assessment of sexual health should occur for all patients to determine whether these needs and hopes include maintenance of their sexual health. The healthcare practitioner’s offer of information and support can make a significant difference in a couple’s ability to adjust to the changes in sexual health during end-of-life care.

Case Study: A Patient With End-Stage Ovarian Cancer “I think that I prefer that at least I have information, so the more information I have at least I feel like I’m in control. I just remember that information about intimacy was very limited out there. You know, could you have sex, could you not? What was viable, what wasn’t after surgery? Frankly, no one ever talked to me about that if you want to know the truth. Anything that I did find, I pursued it and looked for it, because it was a bullet point, or two or

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may have a positive impact on sexual health for the palliative care patient.

 Social Aspects of Care

three in a brochure that was given to me by a nurse or a doctor or who ever. That’s all I got, was a couple of bullet points, and that’s really not enough.” Advanced illness and end-of-life care can interfere with sexual health and physical sexual functioning in many ways. These include physiological changes; tissue damage; other organic manifestations of the disease; attempts to palliate the symptoms of advancing disease, such as fatigue, pain, nausea, and vomiting; and psychological sequelae such as anxiety, depression, and body-image changes. The complexities of human sexuality are broad, especially for people coping with life-threatening illness and those who are facing the end of their lives. The sexual health model (Figure .) reflects these complexities by identifying ten broad components

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Background of Target Population

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Figure .  Application of the Sexual Health Model to HIV Prevention From Robinson BBE, Bockting WO, Simon Rosser BR, Miner M, Coleman E. The sexual health model: application of a sexological approach to HIV prevention. Health Educ Res. 2002;7():43–57.

Sexuality Chapter 

posited to be essential domains of healthy human sexuality: talking about sex; culture and sexual identity; sexual anatomy and functioning; sexual healthcare and safer sex; overcoming challenges to sexual health; body image; masturbation/fantasy; positive sexuality, intimacy and relationships; and spirituality and values. An Institute of Medicine report that addresses cancer care for the whole patient states that, in order to ensure appropriate psychosocial health, healthcare practitioners should facilitate effective communication.2 One study of an oncology population documented that 28% of the patients indicated their physicians do not pay attention to anything other than their medical needs. 3 This chapter is organized according to each component of the sexual health model.

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A cornerstone of the sexual health model is the ability to talk comfortably and explicitly about sexuality, especially one’s own sexual values, preferences, attractions, history, and behaviors. This communication is necessary to effectively express needs to a partner and to discuss with a healthcare provider the alterations in sexual health that have resulted from illness. Psychological distress that patients or their partners experience during diagnosis and treatment of malignancy can impair a healthy sexual response cycle.4

Culture and Sexual Identity Culture influences one’s sexuality and sense of sexual self. The cultural meaning of sexual behaviors needs to be taken into account, because that meaning may impact a person’s willingness or interest in maintaining sexual intimacy while receiving palliative care. The patient and family are at the center of palliative care. A patient’s desire or interest in maintaining physical sexual relations is highly variable. Some may find expression of physical love an important aspect of their life right up to death, while others may relinquish their “sexual being” early in the end-of-life trajectory. Each individual’s identity is influenced, in part, by his or her sexual identity. Roles between spouses or sexual partners are additionally defined by the sexual intimacy between them. Sexual integrity can be both altered and compromised during the course of an incurable disease, deleteriously affecting both the identity and the role fulfillment of the affected person. Sexuality goes far beyond “sexual intercourse.” Sexuality may encompass physical touch of any kind, as well as experiences of warmth, tenderness, and the expression of love. The importance of physical intimacy vacillates throughout a relationship, and may be diminished or rekindled by a superimposed illness. Long-term palliative care providers may see sexual desire and expression ebb and flow between couples throughout the course of care. The patient may view sexual expression as an affirmation of life, a part of being human, a means to maintain role relationships, or the expression of passion in

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Talking About Sex