Journal of Palliative Medicine

The objective of this update, presented at the 2018 Annual Assembly of the American Association of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA), is to identify, summarize, and critique a sampling of recent research that has the potential for marked impact on hospice and palliative clinical practice.

In a departure from previous years, we surveyed AAHPM and HPNA members to determine focused topic areas, from which we selected candidate articles. The two topic areas selected by the membership were “Moving into the great beyond: bringing palliative care into the subspecialties” and “Improving the conversation for patients with serious illness.” Seven reports of original research published between January 1, 2012 and November 3, 2017 were identified through a systematic search of relevant databases, hand searching of leading journals, and discussion with experts in the field. Candidate articles were scored and ranked independently by four reviewers based on methodological quality, appeal to a breadth of palliative care clinicians across settings, and potential for impact.

We summarize the seven articles with the highest ratings.

This study identifies health care providers' perspectives on palliative care at end of life (EOL) in a neuromedicine-intensive care unit (Neuro-ICU) and barriers to providing palliative care.

Provider's EOL expertise is crucial in making timely referrals to palliative care as expectation of patient death can be high. Barriers to referral need to be clearly identified so as to engage quality initiatives that improve EOL care delivery.

The study is a survey design using a mixed-methods approach. Providers at a large academic medical center, including doctors, nurses, and social workers, completed a quality improvement survey.

Forty-one providers responded to Likert-type scales assessing their perspectives on palliative care. Their EOL expertise was independently assessed. In addition, barriers to palliative care referral were collected using a checklist and open-ended responses. The latter were reliably content analyzed through a card-sort technique.

Three palliative care perspectives were identified: foundational perspective, comfort-care perspective, and holistic perspective. Regression analysis shows that providers' perspectives are differentially related to their EOL expertise. Frequencies of provider-reported barriers to referring patients to palliative care (e.g., lack of care coordination) were determined.

Health care providers hold multiple perspectives on what they consider palliative care. Their perspectives are related systematically to different aspects of their EOL expertise. In-house training and quality initiatives could focus on unifying providers' perspectives to create a common language for understanding palliative care. Eliminating individual, intergroup, and organizational barriers is necessary for creating an optimal environment for patients and their families who find themselves, often suddenly, in a Neuro-ICU.

Even though no evidence suggests tube feeding is beneficial for individuals with advanced dementia, many are still tube fed.

To assess perceptions of hospital staff regarding reducing tube feeding (RTF) of patients with advanced dementia.

Cross-sectional survey.

A regional teaching hospital in Taipei, Taiwan.

Hospital staff (n = 624), including physicians, nurses, dieticians, paramedical personnel, social workers, volunteers, attendants, and administrators.

Anonymous questionnaires.

The overall awareness of RTF for advanced dementia patients averaged 10.2 ± 3.74 points (maximum, 19 points) among all respondents. Among the different hospital professions, dieticians scored the highest, whereas nurses and attendants/volunteers had relatively low scores. Over half of respondents (57%) agreed tube feeding is the best choice for advanced dementia with dysphagia. Physicians of different specialties had significantly different responses toward RTF with regard to the belief that tube feeding reduces the risk of aspiration pneumonia, referring patients who refuse tube feeding to other health care team members, and the belief that family members would be able to accept the patient's death along with insufficient food/fluid intake. Only 35.1% of respondents believed they were able to implement comfort feeding.

The present survey shows a persistent knowledge gap among various health care professions regarding tube feeding of patients with advanced dementia. Also, there is insufficient awareness about this subject, indicating that promotion of comfort feeding by enhanced training and communication within medical teams is essential to achieving better person-centered care and preventing unnecessary suffering.

Awareness of disease status has been identified as a factor in the treatment decision-making process. Women with recurrent ovarian cancer are facing the challenge of making treatment decisions throughout the disease trajectory. It is not understood how women with ovarian cancer perceive their disease and subsequently make treatment decisions.

The purpose of this phenomenological study was to understand the lived experience of women with recurrent ovarian cancer, how they understood their disease and made their treatment decisions.

A qualitative design with a descriptive phenomenological method was used to conduct 2 in-depth interviews with 12 women (n = 24 interviews). Each interview was ∼60 minutes and was digitally recorded and professionally transcribed. Data collection focused on patients' understanding of their disease and how patients participated in treatment decisions. A modified version of Colaizzi's method of phenomenological reduction guided data analysis.

Three themes emerged to describe the phenomenon of being aware of disease status: (1) perceiving recurrent ovarian cancer as a chronic illness, (2) perceived inability to make treatment decisions, and (3) enduring emotional distress.

This study revealed how 12 women conceptualized recurrent ovarian cancer as a chronic disease and their perceived inability to make treatment decisions because of lack of information and professional qualifications, resulting in enduring emotional distress. Future research should replicate the study to confirm the persistence of the themes for racially, ethnically, and religiously diverse patient samples and to improve understanding of awareness of disease status and decision-making processes of patients.

Critically ill adult patients who face medical decisions often delegate others to make important decisions. Those who are authorized to make such decisions are typically family members, friends, or legally authorized representatives, often referred to as surrogates. Making medical decisions on behalf of others produces emotional distress. Spirituality and/or religion provide significant assistance to cope with this distress. We designed this study to assess the role of surrogates' spirituality and religion (S/R) coping resources during and after making medical decisions on behalf of critically ill patients. The study's aim was to understand the role that S/R resources play in coping with the lived experiences and challenges of being a surrogate.

Semistructured interviews were conducted with 46 surrogates by trained interviewers. These were audio-recorded and transcribed by research staff. Three investigators conducted a thematic analysis of the transcribed interviews. The codes from inter-rater findings were analyzed, and comparisons were made to ensure consistency.

The majority (67%) of surrogates endorsed belief in God and a personal practice of religion. Five themes emerged in this study. Personal prayer was demonstrated as the most important coping resource among surrogates who were religious. Trusting in God to be in charge or to provide guidance was also commonly expressed. Supportive relationships from family, friends, and coworkers emerged as a coping resource for all surrogates. Religious and nonreligious surrogates endorsed coping strategies such as painting, coloring, silent reflection, music, recreation, and reading. Some surrogates also shared personal experiences that were transformative as they cared for their ill patients.

We conclude that surrogates use several S/R and other resources to cope with stress when making decisions for critically ill adult patients. The coping resources identified in this study may guide professional chaplains and other care providers to design a patient-based and outcome-oriented intervention to reduce surrogate stress, improve communication, increase patient and surrogate satisfaction, and increase surrogate integration in patient care. We recommend ensuring that surrogates have S/R resources actively engaged in making medical decisions. Chaplains should be involved before, during, and after medical decision making to assess and address surrogate stress. An interventional research-design project to assess the effect of spiritual care on surrogate coping before, during, and after medical decision making is also recommended.

Inpatient palliative care consultation (PCC) may reduce 30-day readmissions and inpatient mortality among seriously ill patients.

To evaluate the impact of timing of PCC on 30-day readmissions and inpatient mortality.

Retrospective, observational study comparing risk-adjusted, observed-to-expected (O/E) 30-day readmissions and inpatient mortality among patients receiving inpatient PCC to all other inpatients.

Adult patients with hospital length of stay (LOS) <30 days, primary diagnoses of circulatory, infectious, respiratory, neoplasms, injury/poisoning, and digestive system were included from eight hospitals in a single health care system.

Compared with non-PCC patients (n = 43,463), PCC patients (n = 6043) had a greater proportion of African Americans, Medicare, LOS ≥7 days, intensive care unit stays, discharges to skilled nursing facility and hospice, primary diagnoses of infections and neoplasms, comorbidities of congestive heart failure, cancer, and dementia, Charlson comorbidity score ≥8 (p < 0.001), and fewer males (p = 0.03). Adjusted readmission reduction attributed to PCC among 0–2-, 3–6-, and 7–30-day subgroups was 14.1%, 19.2%, and 16.4%, respectively (usual care O/E = 0.904 vs. subgroup O/Es = 0.764, 0.713, 0.741, respectively). Adjusted mortality reductions attributed to PCC among the 0–2- and 3–6-day subgroups were 19.4% and 19.1%, respectively. A 12% mortality increase was observed in the 7–30-day subgroup (usual care O/E = 0.738 vs. subgroup O/Es = 0.544, 0.547, 0.858, respectively).

Inpatient PCC reduces 30-day readmissions and inpatient mortality with the greatest impact demonstrated within six days of hospital admission. Early PCC should be encouraged for eligible patients.

Health professionals' bereavement practices, including funeral attendance, have attracted relatively little attention from researchers. There may be a number of motivations and perceived benefits for health professionals to attend patient funerals. There are no published data comparing different groups of health professionals' perceptions of and practices in attending the funerals of their patients.

To understand the attitudes and practices of health professionals toward attendance at patient funerals.

Cross-sectional nationwide online survey of attitudes and practices toward attendance at patient funerals based upon data from interviews with health professionals.

Australian health practitioners from medicine, nursing, psychology, social work, and other allied health professions (n = 1098).

Attendance at patient funerals was predicted by age, telling colleagues about own funeral attendance practices, having discussions with colleagues about funeral attendance, having long relationships with patients, and having a majority of patients at the end of life. Nonattendance was predicted by believing that if they cannot attend all funerals, they prefer not to attend any, feeling that colleagues disapprove of funeral attendance, believing that attending funerals is crossing the line between the personal and the professional, and being a psychologist.

Our findings emphasize the need for more open discussions and reflection among individuals and groups of health practitioners regarding attendance at funerals. Understanding the motivations of physicians, nurses, social workers, and other allied health practitioners to attend or not attend patient funerals is an important first step in working toward policies, protocols, and guidelines to support best practice.

Home-based palliative care fills a critical gap between acute care (during crises) and hospice care for seriously ill patients. As of 2018, home-based palliative care capacity in the United States has not scaled to meet patient needs.

The Center to Advance Palliative Care (CAPC) conducted a needs assessment to catalog and analyze barriers to growth in the field of home-based palliative care.

Home-based palliative care program leaders were surveyed and interviewed to elicit information about program characteristics, barriers to meeting national palliative care quality standards or to program growth, and essential elements of program sustainability.

Home-based palliative care program leaders cited their major challenges as being: a lack of clarity on the applicability of national standards to home-based programs, a lack of sustainable financing methods for home-based palliative care, and lack of awareness of existing support resources for program design and leadership development.

Home-based palliative care programs will benefit from improved professional awareness of national quality standards and existing technical assistance. New prospects for alternative payment models that allow for sustainable interdisciplinary home-based care represent a promising opportunity for the field.

Episodic dyspnea is an increasingly recognized phenomenon that occurs frequently in patients with cancer. Although numerous definitions have been proposed to describe episodic dyspnea, to date, no common widely accepted definition in Spanish has yet emerged. Without a clear well-accepted definition, it is difficult to design rigorous clinical trials to evaluate candidate treatments for this emerging entity and to compare outcomes among studies.

The aim of the study was to reach a consensus definition of episodic dyspnea in the Spanish language based on professional criteria in cancer patients.

A two-round Delphi study.

Sixty-one Spanish specialists in medical oncology, radiation oncology, pneumology, palliative care, and pain management participated in the study.

Sixteen different questions on dyspnea-related terminology, including the definition of episodic dyspnea, were assessed.

The panel of experts reached a consensus on 75% of the 16 assessments proposed: 56.25% in agreement and 18.75% in disagreement. The term that most panelists considered most appropriate to define dyspnea exacerbation was dyspnea crisis. The panelists disagreed that dyspnea exacerbation is equivalent to dyspnea at effort and that the presence of dyspnea at rest is required for exacerbation to occur. However, there was wide agreement that exacerbation may or may not be predictable and can be triggered by comorbidities as well as emotional, environmental, or effort factors.

The broad consensus reached in this study is a necessary first step to design high-quality methodological studies to better understand episodic dyspnea and improve treatment.

Evidence increasingly supports the integration of specialist palliative care (PC) into routine cancer care. A novel, fully integrated PC and medical oncology inpatient service was developed at Duke University Hospital in 2011.

To assess the impact of PC integration on health care utilization among hospitalized cancer patients before hospice enrollment.

Retrospective cohort study. Patients in the solid tumor inpatient unit who were discharged to hospice between September 1, 2009, and June 30, 2010 (pre-PC integration), and September 1, 2011, to June 30, 2012 (postintegration). Cohorts were compared on the following outcomes from their final hospitalization before hospice enrollment: intensive care unit days, invasive procedures, subspecialty consultations, radiographic studies, hospital length of stay, and use of chemotherapy or radiation. Cohort differences were examined with descriptive statistics and nonparametric tests.

Two hundred ninety-six patients were included in the analysis (133 pre-PC integration; 163 post-PC integration). Patient characteristics were similar between cohorts. Health care utilization was relatively low in both groups, although 26% and 24% were receiving chemotherapy at the time of admission or during hospitalization in the pre- and post-PC integration cohorts, respectively, and 6.8% in each cohort spent time in an intensive care unit. We found no significant differences in utilization between cohorts.

PC integration into an inpatient solid tumor service may not impact health care utilization during the final hospitalization before discharge to hospice. This likely reflects the greater benefits of integrating PC farther upstream from the terminal hospitalization, if one hopes to meaningfully impact utilization near the end of life.

Our recent research suggests that a fluctuating trajectory, previously thought to be the experience of those dying with heart failure or chronic lung disease, may not accurately characterize the end of life for these patients.

We sought to further examine health and function to investigate whether other measures or a different time frame captures the purported exacerbation/recovery trajectory associated with these diseases.

Function and health data were collected prospectively at six-month intervals for 17 years during the Heath, Aging and Body Composition Study.

We analyzed self-reported mobility, health status, and health care utilization for 1410 decedents, defining high fluctuations as transitions in two or more adjacent assessment pairs during the last three years of life.

Among decedents, only 207 (14.7%) reported two or more changes in mobility during the last three years of life; and 586 (41.6%) reported more than two transitions in self-reported health during the period. This fluctuation was not associated with any clinical condition in the three years before death, but decedents with chronic heart failure or chronic lung disease reported significantly more changes in mobility (odds ratio = 1.15, p = 0.025) for a longer follow-up period. Decedents with heart failure were also more likely to report hospital stays in the last three years of life.

Fluctuations in mobility and self-reported health do not differ by clinical condition in the three years before death, but people dying with chronic heart failure or chronic lung disease are more frequently hospitalized during this period and experience more unstable mobility for a longer period of observation.

Primary care physicians recognize the importance of advance care planning (ACP) conversations and report lack of training and time in the office to start them. Previous efforts have shown that ACP is a low-risk high-value intervention for older patients and those with life-limiting illness.

To measure the impact of physician coaching and staff training with registered nurse (RN) support and electronic medical record (EMR) enhancements on the initiation of 2000 ACP conversations in primary care.

Employing VitalTalk^® physician coaching, Respecting Choices^® “Last Steps” ACP facilitator training, support provided by an ACP nurse liaison and EMR customization, the intervention was introduced into 36 primary care practices with an additional EMR tool adopted by 12 of the 36.

There was an increase from zero at baseline in the number of ACP conversations and a leveling out of new ACP initiated each month. A total of 7200 ACP conversations were initiated for 31 months in 36 primary care practices, and 29% of conversations had advance directives scanned into the EMR during a 10-month review period. Most ACP conversations were initiated by RN care managers. In 2017, there were 7589 more ACP conversations initiated.

By combining two complementary, evidenced-based curricula, providing support of a nurse liaison and designing a summary and alert in the EMR, this program exceeded its goal to initiate 2000 ACP conversations in primary care. Other health systems might consider a similar multicomponent intervention to increase ACP.

Little is known about palliative care consultation (PCC) for patients with cardiogenic shock requiring short-term mechanical circulatory support (STMCS).

To describe the utilization of PCC in this population.

Retrospective cohort study in a university medical center intensive care unit (ICU).

In total, 195 patients aged >18 years with cardiogenic shock requiring STMCS were included. The cohort was divided into three categories: no PCC, early PCC (within seven days of STMCS), and late PCC (eight or more days after STMCS). Follow-up occurred during the index hospitalization.

Mean age was 59.3 ± 13.9 years; 67.9% were men. Mean follow-up period was 33.8 ± 37.7 days. Overall inpatient mortality was 52.3%. Ninety-four patients (48.2%) received PCC; 49 (25.1%) and 45 (23.1%) received early and late PCCs, respectively. STMCS duration, ICU stay after STMCS, and hospital stay after STMCS were significantly shorter in the no PCC group than the early PCC group (4 vs. 12 days, p < 0.001; 11 vs. 19 days, p = 0.004; and 16 vs. 19 days, p = 0.031; respectively). ICU stay after STMCS and hospital stay after STMCS were significantly shorter in the early PCC group than the late PCC group (19 vs. 38 days, p < 0.001; 19 vs. 49 days, p < 0.001; respectively). However, time from initial PCC to discharge was not significantly different between early and late PCC groups (18 vs. 31 days, p = 0.13).

PCC was utilized in almost half of patients with cardiogenic shock requiring STMCS. PCC tends to occur toward the end of life regardless of the duration of STMCS. The optimal PCC timing remained unclear.

Racial disparities in rates of hospice use, a marker of quality of end-of-life (EOL) care, have been a long-standing problem. Although distrust has been cited as a main reason for the preference of intensive EOL care among African Americans, the role of trust has not been closely analyzed in predicting EOL care in the context of advance care planning (ACP) outcomes.

The goal of this review was to empirically examine the role of trust in ACP outcomes.

For this systematic review, we utilized methods adapted from the GRADE process developed by the Cochrane Collaboration. The research question guiding this review was “What is the quantitative influence of trust in the health care system or health care providers on the ACP process for African Americans?” We searched Medline, Embase, and Web of Science for articles published between 1975 and 2016.

We identified nine quantitative studies that measured and evaluated trust as a predictor or correlate of ACP preferences. Of the studies, eight were observational and one was a pre–post-test study. Three studies were designated as low quality, and six studies were of moderate quality.

Distrust has been cited as a central reason for African Americans' tendency to choose life-sustaining treatments over comfort-focused care; however, our findings do not support this hypothesis. The majority of studies found no significant differences in trust between African Americans and their White counterparts. Further, we found that trust was not associated with ACP outcomes in the majority of studies.