Although diseases of the heart are the leading cause of death in the USA, palliative care research has largely focused on populations of cancer patients. However, a diagnosis of heart failure differs substantially than that of cancer. They differ in terms of signs and symptoms, disease trajectories, treatment options, stigma, and prognosis. Additionally, the populations affected by these differing illnesses are also unique in a number of fundamental ways. Based on these differences, it is reasonable to hypothesize that palliative care patients with heart failure, and their families, have a distinct set of psychosocial needs. The purpose of this review is to describe the psychosocial needs of palliative care heart failure patients, and their families, as well as the interventions that address those needs. Six electronic databases were searched in June 2016 resulting in 962 identified abstracts. After removal of 388 duplicates, 574 abstracts were screened based on the following criteria: (1) available in English, (2) peer-reviewed, (3) empirical data reported, (4) patient receiving palliative or hospice care, and (5) measured psychosocial needs of heart failure patients and/or their family caregivers. After screening 574 abstracts and conducting a full-text review of 150 articles, a total of 17 studies were identified in our review. Only three intervention studies were identified, two of which evaluated the impact of palliative care over usual care. The remaining study was a clinical trial of a psycho-educational support intervention, which failed to demonstrate beneficial outcomes. Heart failure patients and their family caregivers receiving palliative or hospice care have unique psychosocial needs that are largely unexamined by previous research. The need for further research is discussed.
Over 140,000 people in the United States have died as a result of infection with COVID-19. These patients have varying death experiences based on their location of death, the availability and utilization of various medical technologies, the amount of strain on the local health care system, the involvement of specialist palliative care (PC) teams, and access to essential medications to alleviate symptoms at the end of life. The objective of this report is to describe the death experiences of four patients cared for in an urban academic medical center who received very different degrees of medical interventions and to examine the interventions of our interdisciplinary PC team. We conclude that PC teams must adapt to this new landscape by creating best practices for ensuring adequate symptom control, modifying approaches for withdrawal of life-sustaining medical technologies, and gaining facility with communication through teleconferencing platforms to meet the challenge of alleviating suffering for people dying from COVID-19.
Background: Critically ill patients with COVID-19 infection on extracorporeal membrane oxygenation (ECMO) face high morbidity and mortality. Palliative care consultation may benefit these patients and their families. Prior to the pandemic, our institution implemented a policy of automatic palliative care consultation for all patients on ECMO due to the high mortality, medical complexity, and psychosocial distress associated with these cases. Objectives: The main objective was to describe the role of the palliative care team for patients on ECMO for COVID-19 infection. The secondary objective was to describe the clinical outcomes for this cohort. Design: Case series. Settings/Subjects: All patients age 18 or older infected by the novel coronavirus who required cannulation on ECMO from March through July of 2020, at an urban, academic medical center in the United States. Inter-disciplinary palliative care consultation occurred for all patients. Results: Twenty-three patients (median age 43 years [range 28-64], mean body mass index 34.9 kg/m2 [SD 9.2], 65% Hispanic ethnicity) were cannulated on ECMO. Eleven patients died during the hospitalization (48%). Patients older than 50 years of age demonstrated a trend toward increased odds of death compared to those younger than 50 years of age (OR 9.1, P = 0.07). Patients received an average of 6.8 (SD 3.7) palliative clinical encounters across all disciplines. The actions provided by the palliative care team included psychosocial support and counseling, determination of surrogate decision maker (for 100% of patients), pain management (83%), and non-pain symptom management (83%). Conclusions: Here, we present one of the first studies describing the patient characteristics, outcomes, and palliative care actions for critically ill patients with COVID-19 on ECMO. Almost half of the patients in this cohort died during their hospitalization. Given the high morbidity and mortality of this condition, we recommend involvement of palliative care for patients/families with COVID-19 infection who are on ECMO. The impact of palliative care on patient and family outcomes, such as symptom control, satisfaction with communication, rates of anxiety, and grief experience merits further investigation.
Ambiguity in End-of-Life Care Terminology-What Do We Mean by "Comfort Care?" "Don't you think he looks comfortable right now?"We stand quietly at the foot of the bed and watch. The patient lies semisupine in the mechanical bed, intermittently breathing slowly and deeply before longer apneic pauses. Despite the soft groan of the bilevel positive airway pressure machine and the occasional chirps from 4 continuous intravenous drips, he seems settled, arms open, hands unfolded to the fluorescent overhead lighting. Even in this state of unconsciousness, he seems to be preparing to die."Yes," we agree. He does look comfortable right now. "That's what I think," the patient's daughter replies. "So why are they talking about 'making him comfortable?'" This is a fair question. Five days ago, she found her father unresponsive on his living room floor and called 911. Like many 78-year-olds, he has accumulated a lifetime of medical struggles that continue to draw on his energy, ability to function, and even resilience. In this instance, a single coronary occlusion on top of baseline heart failure and emphysema was enough to tip the balance. He never awakened. Although he was briefly intubated, his daughter knew that he would not wish to receive extensive life-sustaining measures if they would not restore him to relative independence. She accepts that he will die very soon, perhaps right here, today."Is that what the ICU team said?" Next to his bed, 2 cardiac inotropes, fentanyl for sedation, and a bag of cefotaxime sodium hang like silent witnesses."Yes. They said they want to stop all this." She gestures to the array of lines and tubes. "Two days ago, they told me it's all keeping him alive, it's helping to keep more fluid out of his lungs. Now they say, 'it's time for comfort care.'" She looks at her canvas sneakers. "Whatever that means."Whatever does that mean? In hospital settings, the terms comfort care or comfort measures or even making [him/her] comfortable have essentially become synonymous with end-of-life care. For example, the National
Context. Palliative care (PC) clinical practice guidelines recommend providers assess the impact of illness on intimacy and sexuality. Previous studies around sexuality and intimacy in patients with advanced illness have largely focused on patients with a cancer diagnosis in the outpatient setting. Little is known about such impact of illness on inpatients receiving PC consultation. Objectives. To assess the impact of patient illness on intimacy and sexuality through use of a screening tool and brief clinical questionnaire in hospitalized patients receiving PC consultation. Methods. Between January 2016 and May 2017, palliative social workers at three hospitals asked patients to report the level of impact that their illness(es) had on intimacy and to describe the impact. Data were analyzed using descriptive statistics and chi-square analysis. Qualitative data were analyzed using constant comparison methodology. Results. Among the 97 PC patients screened for intimacy concerns, the majority were female (57.7%), African American (71.1%) and on average 57.9 years of age. Most (91.7%) reported that they had not been previously asked about how their illness had impacted their intimacy. Nearly half (48.4%) reported that illness had moderately or significantly impacted their intimacy; these patients tended to be younger and in a current relationship (P < 0.05). Conclusion. Patients with advanced illness commonly report negative issues regarding intimacy and sexual health. Incorporating routine screening into PC consultation may be warranted.
Pilot data from this quality improvement (QI) project suggest a clear need for intimacy assessment in PC consultation. Intimacy is impacted by serious illness and patients/partners want to discuss issues with clinicians. PC clinicians can incorporate intimacy discussions as part of a routine assessment without adding significant amount of time.
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