The experiences among bereaved family members after a left ventricular assist device (LVAD) deactivation.

BACKGROUND: The use of left ventricular assist devices (LVADs) is increasing with an estimated 2500 devices implanted each year. When burdens of the LVAD outweigh benefits, most individuals with LVADs will undergo deactivation in the hospital setting. While the decision to deactivate an LVAD is considered an ethical practice, little is known about the experience and needs of bereaved family members. OBJECTIVE: To investigate the experiences of bereaved family members of patients who died following LVAD deactivation. METHODS: In this qualitative study, 11 family members of patients who underwent LVAD deactivation were interviewed. The semi-structured interviews were conducted until data saturation was reached and relevant themes emerged. RESULTS: This qualitative study was conducted to understand the experience of family members before, during and after the patient underwent LVAD deactivation, including their perceptions of engagement with the healthcare team. Analysis revealed six overarching themes from the experience, including 1) hope for survival, 2) communication, 3) spirituality and faith, 4) absence of physical suffering, 5) positive relationships with staff, 6) post-death care needs. CONCLUSION: Bereaved family members of patients undergoing LVAD deactivation have unique lived experiences and concerns. This study highlights the importance of effective communication not only near end-of-life but throughout the LVAD experience. While the positive relationships with staff and the absence of physical suffering were strengths identified by bereaved caregivers, there is an opportunity for improvement, particularly during the decision-making and post-death periods.

Massage Therapy for Hospitalized Patients Receiving Palliative Care: A Randomized Clinical Trial.

CONTEXT: Massage therapy is increasingly used in palliative settings to improve quality of life (QoL) and symptom burden; however, the optimal massage "dosage" remains unclear. OBJECTIVES: To compare three massage dosing strategies among inpatients receiving palliative care consultation. METHODS: At an urban academic hospital, we conducted a three-armed randomized trial examining three different doses of therapist-applied massage to test change in overall QoL and symptoms among hospitalized adult patients receiving palliative care consultation for any indication (Arm I: 10-min massage daily × 3 days; Arm II: 20-min massage daily × 3 days; Arm III: single 20-min massage). Primary outcome measure was single-item McGill QoL question. Secondary outcomes measured pain/symptoms, rating of peacefulness, and satisfaction with intervention. Data were collected at baseline, pre- and post-treatment, and one-day postlast treatment (follow-up). Repeated measure analysis of variance and paired t-test were used to determine significant differences. RESULTS: Total n = 387 patients were 55.7 (±15.49) years old, mostly women (61.2%) and African-American (65.6%). All three arms demonstrated within-group improvement at follow-up for McGill QoL (all P < 0.05). No significant between-group differences were found. Finally, repeated measure analyses demonstrated time to predict immediate improvement in distress (P ≤ 0.003) and pain (P ≤ 0.02) for all study arms; however, only improvement in distress sustained at follow-up measurement in arms with three consecutive daily massages of 10 or 20 minutes. CONCLUSION: Massage therapy in complex patients with advanced illness was beneficial beyond dosage. Findings support session length (10 or 20 minutes) was predictive of short-term improvements while treatment frequency (once or three consecutive days) predicted sustained improvement at follow-up.

Sexuality and Intimacy Needs Within a Hospitalized Palliative Care Population: Results From a Qualitative Study.

BACKGROUND: Palliative care (PC) clinicians are well trained to address physical, psychosocial and spiritual needs of patients who have a serious illness. However, one area that is often overlooked is intimacy and sexuality. OBJECTIVE: To explore patient concerns regarding intimacy as it relates to illness, family reactions, physician conversations, and coping strategies and challenges. METHODS: Eligible subjects (at least 18 years old, capacitated, receiving PC consultation at the lead author's institution) participated in semi-structured interviews between November and December 2017. Transcripts were open-coded and analyzed using Dedoose 3.5.35 software. A constant comparative method was used to identify patterns in the data. RESULTS: 21 interviews were analyzed and several themes emerged. Participants described the effect of physical and mental/emotional changes on their relationships. Family relationships, romantic relationships, and sexuality were prominent in patients' experiences of intimacy and how it changed as the illness progressed. Relationships were often noted to strengthen during the course of illness, while sexual activity was frequently reported to be negatively impacted. Patients consistently reported little provider communication on the impact of illness on intimacy beyond instructions about what sexual activities they could or could not engage in. CONCLUSION: This study underlines the significant impact of serious, progressive illness on relationships, sexuality, and physical and emotional intimacy. It highlights that these topics continue to be priorities for patients with serious illness, and that medical teams frequently fail to address them at all. Future research should further explore these issues across diverse patient populations.

Designing and Implementing a COVID Language Resource Guide as a Response to an Acute Need.

The rise of COVID-19 in March, 2020 led to an urgent and acute need for communication guidelines to help clinicians facing a novel disease, amidst a cacophony of voices and demands, find the words to use in the face of this public health emergency. We identified critical topics that arose at the interface of staff, patient and family to guide the structure and content of a guideline. Organized in an easy to read table, the guide was made available to a wide variety of websites, organizations and schools as a free PDF resource across the country and beyond.

Palliative Care for Patients on Extracorporeal Membrane Oxygenation for COVID-19 Infection.

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.

A thematic analysis of in-hospital end-of-life care experiences of surviving family members.

While end-of-life care (EoLC) priorities for patients dying in the hospital are well-documented, few data characterize needs and experiences of their family members. We conducted thematic analysis of audio recorded interviews of 18 bereaved family members to elucidate these experiences. Participants' memories were organized into two parent themes: those related to satisfaction with the care received and effective communication; those identifying shortcomings in patient care, hospital-family communication, hospital environment, and care burden on the part of family members. These findings provide insight to enhance services to patients and their families at end-of-life and improve postmortem and bereavement services.

Lessons Learned from Caring for Patients with COVID-19 at the End of Life.

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.

"I Didn't Know Massages Could Do That:" A qualitative analysis of the perception of hospitalized patients receiving massage therapy from specially trained massage therapists.

OBJECTIVE: This study examined the perception and experience of hospitalized palliative care eligible patients receiving massage therapy from specially trained massaged therapist. DESIGN: Twenty hospitalized palliative care eligible patients received three differing doses of massage therapy from specially trained massage therapists. Patients were interviewed about their experience and perception related to the massage. Open-ended data were collected and analyzed using a grounded theory approach. SETTING: 912-bed tertiary hospital center in Washington, DC. RESULTS: Participants generally perceived the hospital-based massage experience positively. Participants noted how the massage experience provoked reflection on the overall hospital experience in two ways: first, as a reference point to the inpatient environment itself, and second, in terms of how massage reduces this distress and creates a sense of peace, at least temporarily. CONCLUSION: The data collected in these semi-structured interviews showed that massage therapy can uniquely ameliorate some of the most pervasive challenges to quality of life for hospitalized patients affected by chronic and serious illness.

Assessing the Impact of Serious Illness on Patient Intimacy and Sexuality in Palliative Care.

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.

Reading the Room: Lessons on Holding Space and Presence.

The following is a reflection on a patient interaction that draws attention to presence and holding space.

Psychosocial needs and interventions for heart failure patients and families receiving palliative care support: a systematic review.

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.

Screening for Intimacy Concerns in a Palliative Care Population: Findings from a Pilot Study.

BACKGROUND: Intimacy is an important component of the palliative care (PC) assessment. Evaluation of patient concerns related to intimacy should be included in a comprehensive PC consultation. The concerns are rarely assessed for hospitalized PC patients, yet there is evidence to support that patients want to talk about intimacy. OBJECTIVE: We wanted to understand (1) if intimacy was an important issue for hospitalized PC patients; (2) how intimacy was impacted by illness; and, (3) if intimacy concerns were present, what those concerns involved. DESIGN: We designed a brief screening tool to administer to adult patients receiving PC consultation at two hospitals. The tool included demographic information, relevant medical diagnoses, two questions to help identify intimacy issues, and PC team communication to the referring medical team. Mean screening tool administration time was eight minutes. RESULTS: Although the vast majority (96%) of patients reported that they had not been asked about intimacy concerns before the PC consult, a slight majority (56.2%) reported that illness had either significantly or moderately impacted intimacy. Most (96%) found the intimacy discussion helpful and wanted to discuss these issues with medical providers. Those at end of life (EOL) (died <3 months of PC consultation) were older (M = 65 years; standard deviation [SD] = 9.4) than those who were not (55 years; SD = 15.4; p = 0.004). A majority (70.5%) at EOL indicated their illness significantly or moderately impacted their intimacy, and all reported the conversation was helpful and wanted to discuss the issue with providers. CONCLUSION: 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.