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.
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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 ...
