Case Studies in Palliative and End-of-Life Care E-Book

• Herausgeber: John Wiley & Sons
• Kategorie: Fachliteratur
• Serie: Case Studies in Nursing
• Sprache: Englisch

Seitenzahl: 527

Veröffentlichungsjahr: 2012

Beschreibung

Case Studies in Palliative and End-of-Life Care uses a case-based approach to provide students and practitioners with an important learning tool to improve critical thinking skills and encourage discussion toward improving experiences for patients and their families. The book is organized into three sections covering subjects related to communication, symptom management, and family care. Each case is presented in a consistent, logical format for ease of use, highlighting key evidence-based concepts including the case history, care setting, diagnosis and prognosis, assessment, treatment considerations, and family support. A key reference, Case Studies in Palliative and End-of-Life Care is an invaluable resource for clinicians who provide palliative care to patients with life-limiting illnesses and those at the end of life along with their families.

Leseprobe

Contents

Contributor List

EDITOR

CONTRIBUTORS

Introduction

Section 1 Communication Case Studies

Case 1.1 Communicating about a Progressive Diagnosis and Prognosis

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TOOUR CASE

TAKE AWAYPOINTS

Case 1.2 Diagnosis/Prognosis Uncomplicated Death at Home

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 1.3 Accommodating Religiosity and Spirituality in Medical Decision-Making

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 1.4 Discussing Cardiopulmonary Resuscitation When it May Be Useful

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 1.5 Discussing CPR When it is a Non-Beneficial Intervention

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 1.6 Discussing Brain Death, Organ Donation, and Donation after Cardiac Death

HISTORY: CASE 1

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

HISTORY: CASE 2

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

SUMMARY

TAKE AWAY POINTS

Case 1.7 Discussing Physiological Futility

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 1.8 Wounded Families: Decision-Making in the Setting of Stressed Coping and Maladaptive Behaviors in Health Crises

HISTORY

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 1.9 Notification of an Expected Death

HISTORY

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 1.10 Death Notification after Unexpected Death

HISTORY

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Section 2 Symptom Management Case Studies

Case 2.1 Pain: Cancer in the Home

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.2 Treating an Acute, Severe, Cancer Pain Exacerbation

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.3 Pain and Advanced Heart Failure

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.4 Dyspnea and Advanced COPD

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.5 Dyspnea and Heart Failure

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.6 Treating Dyspnea during Ventilator Withdrawal

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.7 Cough Associated with COPD and Lung Cancer

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.8 Hiccups and Advanced Illness

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.9 Treating Nausea Associated with Advanced Cancer

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.10 Nausea Associated with Bowel Obstruction

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.11 Nausea Related to Uremia, Dialysis Cessation

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.12 Opioid-Induced Pruritus

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.13 Pruritus in End-Stage Renal Disease

HISTORY

PHYSICAL EXAMINATION

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.14 Opioid-Induced Constipation

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.15 Depression in Advanced Disease

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.16 Treating Anxiety

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.17 Terminal Secretions

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.18 Fungating Wounds and the Palliative Care Patient

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.19 Pressure Ulcer Care in Palliative Care

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKEAWAY POINTS

Case 2.20 Treating Ascites

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 2.21 Delirium Management in Palliative Care

HISTORY

PHYSICAL EXAMINATION

DIAGNOSTICS

MEDICATIONS

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Section 3 Family Care Case Studies

Case 3.1 Caring for the Family Expecting a Loss

HISTORY

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 3.2 Anticipatory Grief and the Dysfunctional Family

HISTORY

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKEAWAY POINTS

Case 3.3 Acute and Uncomplicated Grief after an Expected Death

HISTORY

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 3.4 Bereavement after Unexpected Death

HISTORY

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Case 3.5 Complicated Grief

HISTORY

CLINICAL QUESTION

DISCUSSION

BACK TO OUR CASE

TAKE AWAY POINTS

Index

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Library of Congress Cataloging-in-Publication Data

Case studies in palliative and end-of-life care / edited by Margaret L. Campbell.p. ; cm.Includes bibliographical references and index.

ISBN 978-0-470-95825-4 (pbk. : alk. paper)I. Campbell, Margaret L., 1954–[DNLM: 1. Nursing Care–methods–Case Reports. 2. Palliative Care–methods–Case Reports. 3. Terminal Care–methods–Case Reports. WY 152.3]616.02′9–dc23

2012011915

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Contributor List

EDITOR

Margaret L. Campbell, PhD, RN, FPCNAssociate Professor—ResearchOffice of Health ResearchCollege of NursingWayne State UniversityDetroit, Michigan

CONTRIBUTORS

Garrett K. Chan, PhD, APRN, FPCN, FAEN, FAANLead Advanced Practice Professional and Associate Clinical DirectorEmergency Department Clinical Decision UnitStanford Hospital and ClinicsStanford, CaliforniaAssociate Adjunct ProfessorSchool of NursingUniversity of California, San FranciscoSan Francisco, CaliforniaPatrick J. Coyne, MSN, ACHPN, ACNS-BC, FAAN, FPCNClinical Director of Thomas Palliative ProgramVirginia Commonwealth University/Massey CenterRichmond, VirginiaConstance Dahlin, APRN, BC, ACHPN, FAANPalliative Care Service, North Shore Medical Center and Massachusetts General HospitalAssociate Clinical Professor, Massachusetts General Hospital Institute of Health ProfessionsFaculty, Harvard Medical School Center for Palliative CareBoston, MassachusettsRita J. DiBiase, MSN, RN(EC), ACNP-BC, ACNS-BC, AOCNS, CHPCN(C)Palliative Care Nurse PractitionerWindsor Regional Cancer Program, Windsor Regional HospitalWindsor, OntarioCanadaJennifer Gentry, RN, ANP-BC, ACHPN, FPCNNurse PractitionerDuke University Hospital Palliative Care ServiceDurham, North CarolinaKelli Gershon, FNP-BC, ACHPNNurse PractitionerSymptom Management ConsultantThe Woodlands, TexasLinda M. Gorman, RN, MN, PMHCNS-BC, CHPN, FPCNPalliative Care Clinical Nurse Specialist/Palliative Care ConsultantLos Angeles, CaliforniaMarian Grant, DNP, RN, CRNP, ACHPNAssistant Professor, Family and Community HealthUniversity of Maryland School of NursingBaltimore, MarylandLaura C. Harmon, ACNP, BC, CWOCN, CCRNNurse PractitionerInternal Medicine and Wound CareDetroit Receiving HospitalDetroit, MichiganRichelle Nugent Hooper, MSN, FNP, ACHPNDirector Palliative Care Clinical OperationsFour SeasonsFlat Rock, North CarolinaTodd Hultman, PhD, ACNP, ACHPNNurse Practitioner and Co-director, Inpatient Palliative Care Consultation ServiceMassachusetts General HospitalFaculty, Harvard Medical School Center for Palliative CareBoston, MassachusettsTerri L. Maxwell, PhD, APRNVice President, Strategic InitiativesWeatherbee Resources Inc. and the Hospice Education Network Inc.Hyannis, MassachusettsKerstin McSteen, MS, ACNS-BC, ACHPNPalliative Care ConsultantAbbott Northwestern HospitalMinneapolis, MinnesotaPatrica A. Murphy, PhD, FAAN, FPCNAPN Ethics/BereavementUniversity Medical and Dental of New Jersey-University HospitalNewark, New JerseyPeg Nelson, MSN, NP, ACHPNDirector, Mercy Supportive Care Palliative and Pain ServicesSt. Joseph Mercy OaklandPontiac, MichiganAdjunct FacultyPalliative Nurse Practitioner TrackMadonna UniversityLivonia, MichiganGrace Cullen Oligario, MSN, FNP-C, ACHPNNurse Practitioner, Oncology and Palliative CareJohn D. Dingell VA Medical CenterDetroit, MichiganDarrell Owens, DNP, ARNPAttending Provider and DirectorOutpatient Palliative Care ServicesHarborview Medical CenterClinical Assistant Professor of Medicine and NursingUniversity of WashingtonSeattle, WashingtonJudy Passaglia, APRN, ACHPNStanford Hospital and ClinicsPalliative Care and Supportive Oncology Program Manager and APNPalo Alto, CaliforniaDavid M. Price, M.Div, PhDNew Jersey Medical SchoolEthics Faculty, retiredNewark, NJJulia A. Walch, RN, MSN, FNP-BCPalliative CareDetroit Receiving HospitalDetroit, MichiganChristine Westphal, MSN, NP, ACNS-BC, ACHPNDirector/Nurse PractitionerPalliative and Restorative Integrated Services Model (PRISM)Oakwood Healthcare SystemDearborn, MichiganJudy C. Wheeler, MSN, MA, GNP-BCPalliative Care Nurse PractitionerDetroit Receiving HospitalDetroit, MichiganRebecca Williams, BS, MA, HHCCHospital Services AssociateGift of Life MichiganAnn Arbor, Michigan

Introduction

Margaret L. Campbell

Case Studies In Palliative and End-of-Life Care is written for clinicians caring for patients and their families across diagnoses, illness trajectories, settings for care, and models of care delivery. All of the contributing authors are advanced practice nurses who bring their hands-on experience and join it with the evidence base for their respective chapters; hence, each chapter reflects the art and science of palliative care.

The conceptual framework for Case Studies In Palliative and End of Life Care is the Clinical Practice Guidelines for Quality Palliative Care produced by the National Consensus Project (NCP). For this book we embrace the definition of palliative care from the NCP as follows: “The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision-making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.”1

Each chapter begins with a case history followed by identification of a single clinical question raised by the case. A comprehensive, evidence-based discussion of the clinical problem follows and the chapter concludes by returning to the case for the outcomes of the treatment plan. Each case ends with “Take Away Points”—succinct summaries of the chapter.

Case studies rely on “story” to engage the learner and are an effective method for clinical teaching because they mimic the clinical encounter. Stories are increasingly recognized as central to learning, facilitating a shared framework for understanding and enabling individuals to learn from one another. Stories also serve a purpose because people tell stories to make diverse information coherent, to give meaning and convey understanding, and to situate concepts in practice.2

Case Studies In Palliative and End-of-Life Care is comprised of three sections: Communication, Symptom Management, and Family Care, with a number of case studies in each section. The cases represent a cross-section of diagnoses including cancer, heart failure, chronic obstructive pulmonary disease (COPD), chronic kidney disease, and dementia. Illness trajectories discussed in the cases range from newly diagnosed to the moment of death. Settings of care are home or hospital. The cases may represent actual patients cared for by the author or may be a composite of similar cases. In no case can the identity of an actual patient or family be identified.

It is my hope that this collection of case studies will be employed for self-learning and for classroom teaching.

    REFERENCES

[1] National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 2nd edition. Pittsburgh, PA: National Consensus Project for Quality Palliative Care; 2009.

[2] Snowden L. Story-telling: an old skill in a new context. Business Information Review. 1999; 16(1):30–37.

Section 1

Communication Case Studies

Case 1.1    Communicating about a Progressive Diagnosis and Prognosis

                  Julia A. Walch

Case 1.2    Diagnosis/Prognosis Uncomplicated Death at Home

                  Constance Dahlin

Case 1.3    Accommodating Religiosity and Spirituality in Medical Decision-Making

                  Jennifer Gentry

Case 1.4    Discussing Cardiopulmonary Resuscitation When it May Be Useful

                  Kelli Gershon

Case 1.5    Discussing CPR When it is a Non-Beneficial Intervention

                  Judy Passaglia

Case 1.6    Discussing Brain Death, Organ Donation, and Donation after Cardiac Death

                  Christine Westphal and Rebecca Williams

Case 1.7    Discussing Physiological Futility

                  Judy C. Wheeler

Case 1.8    Wounded Families: Decision-Making in the Setting of Stressed Coping and Maladaptive Behaviors in Health Crises

                  Kerstin McSteen

Case 1.9    Notification of an Expected Death

                  Peg Nelson

Case 1.10  Death Notification after Unexpected Death

                  Garrett K. Chan

Overview

The effective communication of information to patients and their families is both evidence-based and artful. In the dominant U.S. culture, patients want to be told their diagnosis and prognosis. Because our society is multi-cultural, and not all members share the wish to know bad news, asking the patient about their preferences regarding information is the easiest way to avoid error and respect the patient’s wishes. Breaking bad news to patients or their surrogates is one of the most difficult tasks clinicians face.

An early study identified two categories of spouse needs when the patient is dying in the hospital: relationship with the patient, and family needs for communication and support.1 Successful communication is characterized by collaboration with the other members of the health care team, listening as much as speaking, and acknowledging patient or family emotions. In an early study of the needs of critically ill patients’ families, five of the ten most important needs were for communication:2

To be called at home about changes in the condition of the patient

To know the prognosis

To have questions answered honestly

To receive information about the patient once a day

To have explanations given in terms that are understandable

It is likely that the aforementioned needs of families of critically ill patients represent the needs of families in other settings, including the home or extended care facilities. In a study of the needs of spouses of patients dying in the hospital, these additional communication needs were identified:1

Assurance of the comfort of the patient

Information about the patient’s condition

Informed about the impending death

Ineffective communication about dying is frequently cited as a barrier to optimal care at the end of life.3 In this first section about communication the cases are organized hierarchically from the types of communication that occur early in a diagnosis to those that occur at the time of death. The section opens in Case 1.1 with a case description about presenting a diagnosis and prognosis in a life-limiting illness (dementia). The skills presented can be applied across any condition. Each subsequent case has features that increase the communication complexity. In Case 1.2 the diagnosis and prognosis are presented in the context of the patient’s imminent death. In Case 1.3 the clinician responds to family religiosity while attempting to provide information about a prognosis of imminent death.

The next cases (1.4 and 1.5) focus on routine discussions about resuscitation status and patient preferences. The euphemistic language that persists in clinician’s discussions about cardiopulmonary resuscitation (CPR) and “do not resuscitate” (DNR) with each other, patients, and surrogates confuses medical decision-making; thus, the terms “code status” “coding,” and “coded” have not been used. In the case in Case 1.4 CPR may be a useful intervention, whereas in the case in Case 1.5 CPR is not useful. The authors illustrate important concepts about discussing potentially beneficial and non-beneficial CPR.

Cases 1.6 through 1.8 present special communication circumstances. In Case 1.6 the complexities of discussing brain death and making organ donation decisions are illustrated. Communicating about physiological futility is addressed in Case 1.7 along with ethical considerations. The challenges of communicating with a maladaptive family are explained in Case 1.8.

This book section ends with two cases that describe how to inform the family that patient death has occurred. In Case 1.9 the family is expecting the death but in Case 1.10 the death is unexpected.

    TAKE AWAY POINTS

Communicating about the end of life requires unique skills.

Effective clinician communication is timely, honest, comprehensive, and comprehensible.

Effective clinician communication entails listening as much as talking and acknowledging patient and family emotions.

    REFERENCES

[1] Hampe SO. Needs of the grieving spouse in a hospital setting. Nursing Research. 1975; 24:113–120.

[2] Molter NC. Needs of relatives of critically ill patients: a descriptive study. Heart & Lung. 1979; 8:332–339.

[3] Field MJ, Cassel CK, eds. Approaching death: Improving care at the end of life. Washington, DC: National Academy Press; 1997.

Case 1.1   Communicating about a Progressive Diagnosis and Prognosis

Julia A. Walch

    HISTORY

Thomas was an 88-year-old African-American man who was admitted to the hospital for the third time in a month via the Emergency Department with fever and difficulty breathing; the admission diagnosis was urinary tract infection. He was discharged from the hospital just two days prior to the most recent admission after a prolonged hospitalization for health-care-acquired pneumonia which required intensive care and a short course of mechanical ventilation. He made slow but steady clinical improvements with the exception of his appetite, which remained poor. A percutaneous endoscopic gastrostomy (PEG) tube was being considered by the attending physician. Prior to recent admissions the patient had not been hospitalized in several years.

His past medical history included coronary artery disease status post coronary artery bypass graft surgery, atrial fibrillation, hypertension, Alzheimer’s dementia (AD), and chronic kidney disease. He resided in a nursing home because his wife could no longer care for him at home. A palliative care consult was placed to discuss diagnosis, prognosis, and treatment goals with the patient’s wife.

Thomas’s wife reported that Thomas had been steadily declining over the past six to eight months, he was incontinent of bowel and bladder, and he was able to ambulate short distances and interact with her and other family members.

A geriatric assessment disclosed: needs assistance with activities of daily living (ADLs); dependent for instrumental activities of daily living (IADLs); able to remember three objects after five minutes; clock test abnormal; could not finish the Montreal Cognitive Assessment; able to draw a cube, name animals, recall four out of five words; and oriented to person and place but not time. Thus, he was categorized as being moderately impaired secondary to AD.

Further medical issues identified included malnutrition with hypoalbuminemia, depression with a geriatric depression scale score of 9/15, and debility. A speech language pathology evaluation revealed dysphagia related to pneumonia that may improve once pneumonia improves.

    PHYSICAL EXAMINATION

Temperature: 36.9°C, heart rate: 70s, blood pressure: 110 to 150/60 to 70s

General: Elderly, cachectic male, sitting up in bed, appeared comfortable

Central nervous system: Alert, oriented to person and place, able to follow simple commands, recognized wife

Head, eyes, ears, nose, throat: Arcus senilis

Respiratory: Minimal bilateral basilar crackles, no accessory muscle use, on 2 liters nasal cannula

Cardiovascular: Irregularly irregular, no murmurs

Gastrointestinal: Soft, nontender, nondistended

Genitourinary: Voiding well 120 to 250 cc/hour via urinary catheter

Extremities/skin: No pressure ulcers or deformities

    DIAGNOSTICS

No diagnostic studies were conducted during this visit.

    CLINICAL QUESTION

How should diagnosis and prognosis be discussed with the surrogate decision maker?

    DISCUSSION

Most of what is known about communication of breaking bad news has focused on physician-patient communication in the oncology population at the end of life. Bad news is defined as any information which adversely and seriously affects an individual’s view of his or her future and is always in the eye of the beholder.1 Effective communication is the key to developing a relationship with the patient or family. This level of communication requires mutual respect and strong listening skills that allow for gathering and eliciting information and the implementation of a treatment plan. Doing this well can have a profound effect on how the patient or family approach their disease and its treatment. Effective communication can be achieved in the first meeting. In a first-person account a woman who had been a hospital patient explained how she changed hospitals and doctors three times during the course of her illness not because she was unhappy with the care, but because she was unhappy with the communication.2

Although physicians typically discuss diagnosis and prognosis, nurses are the constant, consistent health care providers, especially in the hospital or nursing home setting. Nurses are often the clinician who the patient or family asks to clarify questions or concerns after the multidisciplinary meeting is completed. Experienced nurses are more comfortable discussing prognosis compared to nurse with less experience.3

The communication strategy SPIKES (Setting, Perception, Invitation, Knowledge, Emotions and Empathic responses, and Strategies and Summary) is a mnemonic device developed to educate physicians on how to deliver bad news.4 Communicating bad news or counseling a patient/family about a chronic, progressive, eventually terminal disease is an essential skill for nurses as well. The nurse can apply the SPIKES mnemonic device to discuss diagnosis and prognosis with patients or families.

Setting up the Interview

Before starting a family meeting, confirm the medical facts of the case and plan what will be discussed. Ascertain if the patient will be able to participate. The patient’s preferences about which family members to include should be elicited. If uncomfortable with communicating the information, rehearse either mentally or to a colleague what you will say. Create the setting for the meeting, which should allow for privacy. A conference room is the ideal setting but if it is at the patient’s bedside draw the curtains around the bed. Some families still prefer to meet at the patient’s bedside even when the patient is unable to participate. Ensure there are enough chairs for everyone and that everyone is sitting down. This aids in relaxing the patient, gives the message that the focus is on the patient, gives an impression that time is not rushed, and prevents the psychological barrier of distance such as when one is seated and another is standing. Plan adequate time for discussion and alert nursing staff about the meeting to prevent interruptions.

Perception

Perception is assessing what the patient or family already understands about the patient’s health. The meeting should start with asking the patient or family to describe the medical condition. The statement “Tell me what you understand about your condition” is an effective opening. A common misunderstanding among health care providers when caring for a patient with a chronic progressive medical condition is that the patient or family may be in denial. However, the real issue is that they do not understand the disease process. This is also the time for the nurse to assess the patient’s or family’s ability to understand and their readiness to accept information.

Invitation

Invitation involves finding out how much the patient or family wants to know. Ask, “Are you ready to talk about our impressions?” or “Is this a good time to talk?” This is also when the nurse establishes how much information the patient wants or whether the patient prefers his or her condition be discussed with someone else. Most people want to know the truth; more than 90% of people want to know the truth about their diagnosis even if it is grave.4 Assessing the level of understanding the patient or family has about the disease helps the clinician to determine how much information/detail they need.

Knowledge

Sharing the information needs to be done in a straightforward, honest, yet sensitive manner. The information conveyed needs to be based on facts and evidence, not on personal opinion. Some families will ask, “What would you do?” A helpful response may be “It is important to base decisions on what your loved one would want.” Information that is conveyed correctly to the patient or family allows them to cope with the situation and plan for the future. Avoid the use of medical terminology or technical jargon. There are times when a “warning shot” is needed to prepare the family that bad news is coming; for instance, the clinician might say “We have your results and I have bad news.”

Emotions with Empathetic Responses

The clinician can display empathy while delivering bad news by saying “I am sorry to have to tell you this.” It is best not to just say “I’m sorry” because this can be misinterpreted for pity or being responsible for the situation.

Patients and families respond to the news in a variety of ways such as through tears, sadness, love, anxiety, or other emotions. Some experience denial, blame, guilt, or disbelief. Some people walk out of a meeting or respond nonverbally. Patients who might not be able to walk away but do not want to participate any longer may turn away, close their eyes, or just stop speaking. In this case clarify with the patient that they want to stop meeting and ask permission to return at another time or day. It is important to acknowledge emotions by asking for a description about what is being displayed. “You appear to be....Can you tell me how you are feeling?” or “Tell me more about what you are feeling.” Once the patient or family has worked through their emotions they are often able to make decisions in the best interests of themselves or their loved one. Patients or families who have good information and sufficient time are able to cope with the news and participate in decision making.

Strategy and Summary

The final step is planning and follow-up. This may include gathering further information from tests or procedures, setting up another family meeting, or making referrals to an outside agency such as hospice. This is also when the clinician explains treatment plans, addresses any concerns, and plans for follow-up. At the end of the meeting the patient and family should feel their concerns were addressed and not feel abandoned. A follow-up meeting should be made and contact information provided. Throughout the meeting, frequently allow the patient or family to ask questions, and assess whether they want to continue. Some people need to have the information repeated several times, whereas others need only to hear it once.

    BACK TO OUR CASE

The primary goal for the meeting was to educate Thomas’s wife about AD and its natural history and to counsel her that it is a progressive terminal illness. Other goals of the meeting included discussing resuscitation status, goals of care including hospice, and late stage care including recommendation for oral/hand feeding only in the end stage (no PEG). In this case the patient was not yet eligible for hospice; however, part of the education about a progressive illness is future planning.

Preparation for this meeting included a review of the medical record, examination of Thomas, and discussion with other health care providers. Thomas’s wife was already in the his room and a meeting had not been formally set up, so the clinician introduced herself and the reason for the consultation by saying “I would like to speak with you about your husband’s Alzheimer’s. Is this a good time to meet?” The meeting was at the patient’s bedside. Thomas’ wife was asked her understanding of the patient’s dementia. She had a basic understanding of the disease and gave a history of decline over the last six to eight months and recent nursing home placement. There was discussion about the natural course of AD, including late stage progression and feeding issues.

The following strategy was used to explain this to Thomas’ wife: Alzheimer’s is a disease of the brain that follows a pattern of decline, in which the brain stops sending out voluntary and involuntary signals. A patient with Alzheimer’s does not stop walking because there is something wrong with their legs, the brain stops telling the person to get up and walk. They become incontinent not because there is an issue with the bladder or bowel but because the brain is no longer sending a signal that the bladder or bowel is full. Thomas’s wife was able to comprehend the information and apply it to the changes she had seen in her husband.

Even though AD often lasts years, many families have limited knowledge of the disease and few understand that it is eventually fatal. Discussion with Thomas’s wife about resuscitation status resulted in a decision to not resuscitate. Thomas’s wife struggled with the discussion about hospice and the certainty of the disease progressing further. Thomas had a moderate stage dementia and by hospice guidelines was not eligible; however, he was declining and had a few recent hospitalizations including an intensive care unit stay for pneumonia. Thomas’s wife declined to meet with hospice, but she had the knowledge that her husband’s condition was expected to decline and that hospice was an available resource in the future.

    TAKE AWAY POINTS

Take the time needed to gather information and prepare for the meeting.

Patients and families want honest, evidence-based information, even when the prognosis is poor.

Effective communication allows patients and their families to plan for the future.

Effective communication is the key to developing a relationship with the patient or family. This level of communication requires mutual respect and strong listening skills that allow for gathering and eliciting information and the implementation of a treatment plan.

    REFERENCES

[1] Buckman R. Breaking Bad News: A Guide for Health Care Professionals, 15th edition. Baltimore: Johns Hopkins University Press; 1992.

[2] Dias L, Chabner BA, Lynch TJ, Penson RT. Breaking bad news: A patient’s perspective. The Oncologist. 2003; 8:587–596.

[3] Malloy P, Virani R, Kelly K. Beyond bad news: Communication skills of nurses in palliative care. Journal of Hospice & Palliative Nursing. 2010; 12 (3):166–174.

[4] Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES—A Six-step protocol for delivering bad news: Application to the patient with cancer. The Oncologist. 2000; 5:302–311.

Case 1.2   Diagnosis/Prognosis Uncomplicated Death at Home

Constance Dahlin

    HISTORY

Sundra was a 70-year-old Indian woman with a five-year history of dementia, diabetes, and debility. She had been admitted to the hospital three times in her last several months for infection. At her last hospital discharge, she indicated a preference for no future life-prolonging measures such as resuscitation, intubation/ventilation, or transfer to the intensive care unit. In fact, she wanted to avoid the hospital completely. She had talked with her family and they understood and respected her feelings.

Sundra was referred to hospice. Although she had lived in assisted living she moved to her daughter’s house. Sundra had pain with movement and cried when she was touched. She disliked being cleaned or bathed because it hurt too much. In fact, she didn’t like the finger sticks that were done to measure her glucose blood levels. After some discussion, these were discontinued because her blood sugar had been consistently low since she was not eating.

Her fatigue was profound. She had little energy to read, talk, or eat, the things she loved to do. She was, however, able to watch television. Her appetite had diminished, resulting in weakness and weight loss. She often coughed when she swallowed. She had no pruritis, shortness of breath, constipation, or discomfort from anything else.

    PHYSICAL EXAMINATION

Temperature: 38.2°C, Blood pressure: 125/70, Heart rate: 80, respiratory rate: 14

Head, eyes, ears, nose, throat: Normocephalic; pupils equal, round, reactive to light and accommodation; extraocular movements intact; dry oral mucosa; no lesions; no defects; no abnormalities

Chest: Bilateral clear sounds, no extraneous sounds, unlabored breathing

Heart: S1 S2 no S3 or S4, no murmurs or rubs

Abdomen: Positive bowel sounds, soft, non-tender, soft,

Extremities: Thin, little muscle mass

Neurologic: Alert and oriented to person and place; flat affect

    DIAGNOSTICS

No diagnostic studies were conducted during this visit.

    CLINICAL QUESTION

How do you recognize imminent death and communicate it to the family?

    DISCUSSION

In 1997, the Institute of Medicine described a good death as “one that is free from avoidable distress and suffering for patients, families, caregivers.”1 According the American Nurses Association Social Policy Statement, “Nursing helps patients experience a dignified death.”2 The essence of palliative care nursing is promoting death at home when possible and when desired by the patient. Death, like birth, can be predictable in its process although unpredictable as to the exact time. Death at home can be a healing process for patients and families. Many patients have an instinct about their time of death. Although a patient’s instinct may not match their clinical condition, they may have more of a sense of when they will die.

The usual process in the last stage is very peaceful as the patient becomes more sleepy, then lethargic, obtunded, and comatose.3 There are physical signs and symptoms of dying which can help offer some idea of time of death. Additionally, there are two conditions that may influence the time of death. First, there may be an emotional component that includes some closure that patients need to attend to. This may be an important milestone such as a birthday, anniversary, holiday, birth, graduation, or the like. Second, there are physiological aspects to time of death; for example, once patients stop receiving fluids in any form, it is unlikely that they will live more than two weeks.4

Signs and symptoms of dying have long been recognized, although in the literature signs and symptoms of dying now have been delineated as “syndrome of imminently dying.” However, some signs and symptoms depend on the stage of disease from which the individual is dying as well as co-morbid illnesses. Some end-stage disease processes have fewer painful sequelae than others, although dying is similar no matter what the diagnosis. Dying from end-stage renal disease or dementia may be relatively painless because the patient may simply drift into unconsciousness. Dying from heart failure or amyotrophic lateral sclerosis or pulmonary failure may cause more discomfort due to the presence of more symptoms.3

There are a constellation of symptoms that signify that death is near. In terms of psychological and emotional aspects, patients may become more withdrawn. They may lack the energy to engage with people; they may not leave their room or their bed.

As a result, their social interactions diminish. They may also have visions of people close to them, some of whom may be deceased. They may also become restless or agitated.3–5

The signs of this weakness may be seen in changes in vital signs such as lowered blood pressure and higher heart rates and changing respiration rates. In the last stages of the dying process, patients are asleep more than they are awake. They may become obtunded and unable to be aroused. Their breathing may change and there may be secretions or congestion. This is more disturbing to family members than the patient.

Treatment

The key element is to listen to the patient. Often, the patient may say he is either done fighting or doesn’t have the energy to do much more. The nurse can confirm with the patient whether this means he is ready to die. He may feel relief in having support that it is okay to die. Moreover, these statements signify it is time to discuss concerns with the patient about what he needs to do for end-of-life closure and offering support to the patient.

It may then be necessary for the nurse to coach families about the dying process. Often, family members recognize a patient’s decline and understand death is near more easily than the patient. This comes from the necessity of providing more personal care or that the patient is eating less and sleeping more. Sometimes the family may be so overwhelmed they cannot see what is happening. It is then important for the nurse to gently explore how the patient’s condition is changing and let the family come to an understanding that death is close.

Finally, the nurse may need to assist the family to allow and offer permission to the patient to let go. Families may need help with sample sentences such as “We will take care of Mom. It is okay to go,” or “ I will be okay. I don’t want you to suffer. It is okay to go.”

Depending on spiritual or religious tradition, the patient may ask for a spiritual counselor. Here the nurse can facilitate the presence of that person. If the family asks for this, the nurse must assess if it is for the patient or family. If it is clear the patient would not have wanted this, the nurse can discuss the use of ritual for the family outside of the patient’s room.

Closer to Death

As the patient moves closer to death, the family may want to be in attendance. This is known as the vigil. It can be emotionally and physically draining. Permission should be given take care of themselves in this process. Support should be given to the family that they do not have to be there every minute. Encouragement should be given to take breaks to eat, drink, and sleep. Often the nurse can assist them in making a schedule of various family members for sharing in the vigil and taking breaks. See Case 3.3 for care of the family anticipating a loss.

The Death

Although nurses know when death has occurred, the family may need communication about the signs of death. Physical signs include absence of heart beat, absence of respirations, fixed pupils, pale and waxen skin color, and cool body temperature. There may be release of stool and urine and a relaxed jaw. The patient’s eyes may remain opened or closed. When this occurs, the nurse should tell the family that death has occurred and allow quiet time. Then the nurse should prepare the family for the next steps of death notification and care of the body. More information and guidance is helpful at this time because families are emotional and may not retain details.

Often families ask about the timing of things in the initial post death period. They often want to know about timing of post mortem care of the body. The nurse can answer that death notification is first and care of the body second. Local statues may dictate timing. Nonetheless, body care should be explained and families should be offered the option and opportunity to participate. Some families find it healing and others find it morbid.

Death notification again should follow local jurisdiction. If the patient is enrolled in a hospice program, the nurse notifies the physician and hospice. Local authorities may need to be notified as appropriate. If it is an expected home death with home health nursing services, there may be a different process. A death pronouncement may need to be completed for the authorities. Later, a death certificate will need to be completed. Additionally, the family may need assistance in notifying the funeral home for pick up of the body.

Finally, the nurse should wait with the family until the funeral home comes to take the body. Families may be afraid to be alone with the body. They may need time to do a life review. Or they may ask for help in notifying other relatives. This quiet time allows the nurse time for reflection of his involvement in the care and can help with caregiver stress of caring for the dying. Additionally during this time, the nurse performs a grief assessment to see how the family is doing. Safety for the family includes collecting the medications used by the patient in the dying process and destroying them. Various agencies may have policies on how this is done because it often needs to be witnessed.

    BACK TO OUR CASE

Sundra became weaker and weaker. Her daughters stayed with her around the clock and provided meticulous personal care. They gave her an eye dropper of pain medications under her tongue before they provided any further care. They gently rubbed her skin with favorite lotions and oils. Even though she was thin, she had no bed sores. They cleaned her mouth with sponges and applied frequent applications of lip balm. As her weakness progressed, she could no longer eat or drink without coughing. They decided to stop food and fluids and all medications. Sundra talked quietly and told them she was comfortable and she appeared peaceful to the nurse. She said she was ready and asked her daughters if it was okay if she left. Her daughters tearfully told her they loved her and that it was time to go. Her vital signs decreased. The daughters knew she was close to death. The nurse told them what would happen, and reviewed the need for any other family to see her before she died or any religious rituals. Family gathered in the evening and Sundra died peacefully in the morning. Her daughters felt it was a gift to care for her at home.

    TAKE AWAY POINTS

The dying process includes some predictable signs and symptoms such as fatigue, weakness, loss of appetite, and less engagement of the patient.

Information about the dying process may help families cope better.

    REFERENCES

[1] Institute of Medicine. In: Field MJ, Behrman DE, et al., eds. Approaching Death: Improving Care at the End of Life. Washington, DC: Institute of Medicine, National Academy Press; 2003.

[2] American Nurses Association. Nursing: Scope and Standard of Practice. Washington, DC: American Nurses Association; 2010.

[3] Lynch M, Dahlin C. The National Consensus Project and National Quality Forum. Preferred practices in care of the imminently dying patient: Implications for nursing. Journal of Hospice and Palliative Care Nursing. 2007; 9(6):316–322.

[4] Lo K. Changes as Death Approaches. In: Panke J, Coyne P, eds. Conversations in Palliative Care, 2nd edition. Pittsburgh: Hospice and Palliative Nurses Association; 2006; 161–171.

[5] Callahan, M. What is Normal for Dying Isn’t Normal. Final Journey—A Practical Guide for Bringing Care and Comfort at the End of Life. New York: Bantam Books-Random House; 2008.

Case 1.3   Accommodating Religiosity and Spirituality in Medical Decision-Making

Jennifer Gentry

    HISTORY

Cynthia was a 50-year-old African-American woman admitted to the hospital with abdominal pain, nausea, and vomiting. Upon further evaluation, Cynthia was diagnosed with stage IV ovarian cancer. She underwent surgery for a suspected bowel obstruction, but the disease was too advanced for tumor de-bulking or placement of a gastrostomy tube. Post operatively, she was started on total parenteral nutrition as a bridge to receiving chemotherapy.

Cynthia’s sister, Phoebe, was by her side throughout her hospital stay. Cynthia’s only other family was an adult daughter and young grandchild, who lived in another state. Both Cynthia and Phoebe expressed the importance of their faith in tangible ways. Above the head of the bed was a banner that read, “Expect a miracle” and there were numerous outward expressions of faith visible in the hospital room including a Bible on the bedside table. Cynthia’s sister met each staff person who entered the hospital room with one request: “If you don’t have anything positive to say, stay out”. The medical team believed that Cynthia would likely die from her illness within six months but attempts to discuss prognosis and goals of care were met with strong resistance from both Cynthia and her sister. Both the patient and her sister frequently referred to their belief in miracles and expressed the belief that God would miraculously heal Cynthia.

    PHYSICAL EXAMINATION

Temperature: 37.4°C, Pulse: 112, respiratory rate: 22

Central nervous system: Alert, oriented, no focal deficits

Head, eyes, ears, nose, throat: Alopecia, temporal wasting, no other abnormalities

Cardiac: S1 S2 and tachycardia, no S3 or S4, no murmurs

Lungs: Clear lung sounds, diminished at bases, no accessory muscle use

Gastrointestinal: Firm, distended abdomen, occasional high-pitched bowel sounds, diffuse tenderness, midline incision with intact staple line

Genitourinary: Voiding

Extremities: 2+ bilateral lower extremity edema, no pressure ulcers or deformities

    DIAGNOSTICS

Abdominal CT scan: Evidence of diffuse peritoneal carcinomatosis, small bowel obstruction

Chemistry and complete blood count: Unremarkable

Ca 125: 99.3 (normal range zero to 35)

    CLINICAL QUESTION

How do providers accommodate religiosity when communicating a poor prognosis?

    DISCUSSION

Defining Spirituality and Religiosity

Puchalski defines spirituality as that which gives people meaning and purpose in life, with religion being one expression of that spirituality. Mueller describes religion as something that “organizes the collective spiritual experiences of a group of people into a system of beliefs and practices” and goes on to define religiosity as “the degree of participation or adherence to the beliefs and practices of an organized religion”.1,2 Though some people consider spirituality important, they may do so without holding specific religious beliefs. Religious beliefs can be the filter for how a serious illness is viewed and inform a person’s response to it.1

Influence of Spirituality and Religiosity on Decision-Making

A divide exists between the public and the health care profession regarding the importance of religious beliefs in medical decision-making.3 In one study, health care professionals considered religious beliefs less important in decision-making than the public at large.3 Beliefs in divine intervention in situations deemed medically futile, such as recovery from a persistent vegetative state, are common.3 The impact of these beliefs should not be underestimated by the health care team because they directly influence the type and aggressiveness of care provided, even when the patient’s prognosis is poor. Despite the importance of religion in the lives of patients, spiritual needs frequently go unmet by the health care system.4

Balboni and colleagues studied the effect of serious illness on the need for spiritual support and how religiousness affects preferences for treatment.4 African–Americans and Hispanics were more likely than Caucasians to consider religion very important.4,5 Patients with higher degrees of religiousness have an association with preferences for more aggressive treatment and all measures to extend life.4,5 Phelps and colleagues examined the influence of religious coping and aggressiveness of care in patients with end-stage cancer.6 Religious coping referred to the use of religious beliefs and practices to understand and adapt to the stress of life-threatening illness. In this study, patients with a high degree of religious coping were significantly more likely to have preferences for aggressive, life-prolonging care such as mechanical ventilation, fewer advance directives, and fewer do not resuscitate (DNR) orders.6 It is not difficult to imagine that strongly held religious beliefs may directly conflict with medical opinions regarding prognosis and course of treatment.

Care of seriously ill patients includes more than caring for the body but also caring for the human spirit. Acknowledging the multidimensional aspects of a person’s being are essential to providing the type of care that both relieves suffering and supports coping at the most basic level. Spiritual beliefs become increasingly important as the end of life approaches,7 and spiritual pain/existential suffering can exacerbate symptoms such as depression and anxiety.8 Many patients would like their provider to inquire about their spiritual and religious beliefs if they become gravely ill, yet this is something with which many health care providers feel uncomfortable.9 By first recognizing the importance of providing excellent spiritual care, the health care team can begin a respectful dialogue about spiritual/religious beliefs while keeping lines of communication open.

Spiritual Care Assessment

Engaging a patient and family in the discussion of their spiritual/religious beliefs can help to establish trust and understanding of the patient’s approach to her illness. Health care professionals must consider spiritual assessment to be as important as a thorough medical history and physical examination. Several tools for spiritual assessment exist and one the best known, the FICA spiritual assessment tool, is an effective way for clinicians to integrate open-ended spiritual questions into the medical history:10

F: Faith, Meaning, Belief

Religious/religiosity: Faith, including specific religious beliefs, rules of conduct, rituals, behaviors, values (“Do you consider yourself spiritual or religious?”)

Spirituality: Attitudes and beliefs in life, a higher-power, nature, value (“What gives your life meaning?”)

I: Importance and Influence

Importance of faith or belief

How would you rate the importance of faith or belief in your life (0 to 5 point scale)?

Do your beliefs help in handling stress?

How do your beliefs affect making health care decisions?

C: Community

“Are you part of a religious or spiritual community?”

“How does this community offer support to you?”

“Is there a group of people that are very important in your life?”

A: Address in Care

“How can your health care team best support your spirituality?”

“How would you like your health care team to use the information we have talked about in your care?”

Other clues that invite exploration of religious or spiritual beliefs are right in front our eyes and beg further investigation. Examples of helpful open-ended questions that can easily be included in conversation:11

Ask questions: “What has helped you get through this difficult time?”, “Tell me more about how this has been helpful.”

Listen for clues that patients and families give: “All I can do now is pray.” “Miracles happen.”

Look for clues such as religious/spiritual objects or books (Bible, Koran, inspirational books, religious objects/depictions).

Responding to Belief in Miracles

The use of the word “miracle” is common in health care settings and may be associated with religious beliefs.12 Rushton describes miracles as “unexplainable events or actions that challenge the limits of humans, technology and apparently contradict known scientific laws”.12 When the word “miracle” is used by patients and families, professionals may assume that “denial” is present rather than an opportunity to explore. Using medical explanations to challenge a belief in miracles almost never works and may harm communication moving forward. Inviting further discussion with thoughtful questions and acknowledging the emotion of the situation can improve understanding. It is vital to involve spiritual care professionals when religious/spiritual beliefs, such as miracles, impact care. Rushton has identified strategies that can assist clinicians in working with families whose religious beliefs in miracles can affect decision-making:12

Search for common ground: Acknowledge a mutual commitment to the patient’s best interests

Assess understanding: Ask “What do you understand about the situation” and provide accurate information and correct misunderstandings

Understand the meaning of miracles, don’t assume: “Tell me more about your belief in miracles”

Honor one’s faith: Faith traditions of both the patient and the professionals must be understood and honored

Allow hope for a miracle: Acknowledge and respect another’s beliefs, values, and faith

Respecting Professional and Personal Boundaries

Respecting the belief system and faith of a patient and family can be a challenge when the provider has personal spiritual or religious views that are very different. Though a spiritual assessment can provide information vital to the development of the plan of care, the patient’s privacy should be respected if she does not wish to discuss her beliefs. Health care providers are in a position of authority and must guard against imposing personal perspectives on vulnerable patients.13 Recognizing the value of professional chaplains and other spiritual care professionals in patient care is essential. There may be situations in which a patient has theological concerns and questions that require the expertise of a “spiritual care specialist” and making a referral can be very helpful.

Patients frequently ask their health care provider to disclose personal spiritual beliefs and opinions. In some situations, a patient may ask the provider to pray. Health care providers may feel uncomfortable with these conversations and struggle to find an appropriate response. Responding with “I am sorry but I can’t do this” may inhibit future communication, convey a lack of empathy, or engender mistrust. Conversely, a provider offering: “Would you like for me to pray with you?” may lead to a vulnerable patient feeling obligated to comply. Puchalski notes that it is seldom appropriate to share one’s personal beliefs with patients unless one knows the patient and that sharing these beliefs would not influence or inhibit the sharing of these beliefs.13 Answering the patient’s request with a question such as “Tell me more about why you ask?” can further the conversation while conveying empathy and respect. A similar response, “I respect your beliefs. I would like to hear more about them and what they have meant to you,” puts the focus back on the patient and off of the provider. Though some patients may not be satisfied with this response, the health care professional should not violate his own comfort level.13

    BACK TO OUR CASE

Regrettably, Cynthia’s condition deteriorated despite all efforts and she was transferred to the intensive care unit (ICU), where she was intubated and supported on vasopressors. Cynthia was unable to speak for herself and the medical team had a meeting with both her adult daughter and her sister. The grim prognosis was brought up by the team, who suggested discontinuing the life support, but the family remained steadfast in their desire that full resuscitative measures and aggressive care be in place. The family strongly expressed a belief that a miracle would happen and were upset that the team “wanted to give up.” The patient remained on mechanical ventilation in the ICU for 12 weeks. Tension between the desires of the family and delivering what the team felt to be “futile” care remained constant.

Though chronically critically ill, Cynthia remained in the ICU for 12 weeks with her family by her side. During this time, discussions related to the goals for Cynthia’s care became more focused on ways to manage symptoms, and to continue the course of treatment without initiating additional invasive treatments. During a care meeting, the family, ICU, and palliative care team were able to express a shared commitment to the goal of providing the best care for Cynthia: “Though we can continue to hope for a miracle, at the same time, there is much that can be done to improve her symptoms and avoid more discomfort.”

Withdrawal of the ventilator was not open to discussion but a tracheostomy was placed to ease the discomfort caused by the endotracheal tube. Liberal visitation for family and friends was encouraged and faith-based rituals including prayer, singing, religious music, and “laying on of hands” were respected and accommodated as much as possible. The ICU staff took an approach that avoided confrontation and allowed for the open expression and practice of religious beliefs. It was this approach that facilitated trust between the patient, family, and health care team. At the end of her life, Cynthia was allowed to die without an attempt at resuscitation but remained on the ventilator.

    TAKE AWAY POINTS

Spiritual needs have increasing significance at the end of life.

Religious beliefs are important components of medical decision-making.

High levels of religiosity are associated with increased use of aggressive care at the end of life.

Spiritual assessment is an essential component of care for seriously ill patients.

Open-ended, non-confrontational communication techniques are essential in exploring how religious beliefs affect decision-making.

Providers should guard against imposing personal spiritual or religious beliefs on patients and their families.

    REFERENCES

[1] Puchalski CM, Dorff E, Hendi Y. Spirituality, religion, and healing in palliative care. Clinics in Geriatric Medicine. 2004; 20:689–714.

[2] Mueller P, Plevak D, Rummans T. Religious involvement, spirituality, and medicine: Implications for clinical practice. Mayo Clinic Proceedings. 2001; 76:1225–1235.

[3] Jacobs L, Burns K, Jacobs B. Trauma death: Views of the public and trauma professionals on death and dying from injuries. Archives of Surgery. 2008; 143:730–735.

[4] Balboni TA, Wanderwerker LC, Block SD, Paulk E, Lathan CS, Peteet JR, Prigerson HG. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. Journal of Clinical Oncology. 2007; 25:1140–1147.

[5] Johnson KS, Kuchibhatla M, Tulsky JA. What explains racial differences in the use of advance directives and attitudes toward hospice care? Journal of the American Geriatric Society. 2008; 56:1953–1958.

[6] Phelps AC, Maciejewski PK, Nilsson M, et al. Religious coping and use of intensive life-prolonging care near death, in patients with advanced cancer. Journal of the American Medical Association. 2009; 301:1140–1147.

[7] Steinhauser KE, Christakis NA, Clipp EC, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of the American Medical Association. 2000; 284:2476–2482.

[8] Delgado MO, Hui D, Parsons HA, et al. Spirituality, religiosity, and spiritual pain in advanced cancer patients. Journal of Pain and Symptom Management. March 2011; epub ahead of print.

[9] Ehman J, Ott B, Short T, Ciampa R, Hansen-Flaschen J. Do patients want physicians to inquire about their spiritual or religious beliefs if they become gravely ill? Archives of Internal Medicine. 1999; 159:1803–1806.

[10] Borneman T, Ferrell B, Puchalski CM. Evaluation of the FICA tool for spiritual assessment. Journal of Pain and Symptom Management. 2010; 40:163–173.

[11] Gentry JH, Galanos AN, Bryan L. Spiritual Warfare: Moral distress. Austin, Texas: Annual Assembly of the American Academy of Hospice and Palliative Medicine/Hospice and Palliative Nurses Association; 2009.

[12] Rushton CH, Russell K. The Language of miracles: Ethical challenges. Pediatric Nursing. 1996; 22:64.

[13] Braam A, Klinkenberg M, Deeg D. Religion and mood in the last week of life: An explorative approach based on after death proxy interviews. Journal of Palliative Medicine. 2011; 14:31–37.

Case 1.4   Discussing Cardiopulmonary Resuscitation When it May Be Useful

Kelli Gershon

    HISTORY