Journal of Palliative Medicine

The aim of this study is to report the results of a second cycle audit of the use of subcutaneous levetiracetam (Keppra^®) and an updated literature review of management of seizures in palliative care patients.

A comprehensive literature review on the use of subcutaneous levetiracetam performed in 2016 was updated. A retrospective audit of the use of subcutaneous levetiracetam for inpatients at Sir Michael Sobell House Hospice during the period of 2019–2020 was performed. Ethical approval was not required and was therefore not sought.

We report an additional 66 cases identified through an updated literature review and our audit. Fourteen articles were identified from the literature review, reporting a total of 120 cases where subcutaneous levetiracetam was administered.

We report 19 further cases of subcutaneous levetiracetam administration between April 2019 and April 2020. Doses ranged from 500 mg to 4000 mg daily. Doses above 2000 mg were administered using a T60 syringe driver. The oral-to-subcutaneous conversion ratio was 1:1 in all but one case where the dose had to be reduced to fit a T34 syringe driver, after which the T60s were purchased. Levetiracetam was not mixed with other medications, but administered alone using water as the diluent for injection. Where necessary, the dose was appropriately adjusted for renal function. No site reactions were reported.

Combined analysis of the 139 cases of subcutaneous levetiracetam administration suggests that this treatment continues to have a role in management of seizures at the end of life. Clinical outcomes suggest that therapeutic levels may be achieved, although there are only very limited data available with a few cases worldwide to support this. Randomized controlled trials are urgently needed to establish the efficacy and tolerability of subcutaneous levetiracetam administration.

Advance care planning (ACP) is intended to help patients and their spokespersons prepare for end-of-life decision making, yet little is known about what factors influence the extent to which spokespersons feel prepared for that role.

To examine spokespersons' perceived preparedness for surrogate decision making after engaging in ACP.

Mixed methods experimental design with qualitative thematic analysis and data transformation (creating categorical data from rich qualitative data) of interviews collected during a randomized controlled trial (2012–2017).

Two tertiary care medical centers (Hershey, PA and Boston, MA). Of 285 dyads (patients with advanced illness and their spokespersons) enrolled in the trial, 200 spokesperson interviews were purposively sampled and 198 included in the analyses.

Interviews with spokespersons (four weeks post-intervention) explored spokespersons' perceived preparedness for surrogate decision making, occurrence of ACP conversations, and spokespersons' intentions regarding future surrogate decisions. Data transformation was used to categorize participants' responses into three categories: Very Prepared, Very Unprepared, or In Between Prepared and Unprepared. Themes and categories were compared across arms.

About 72.72% of spokespersons (144/198) reported being Very Prepared and 27.28% (54/198) reported being Very Unprepared or In Between with no differences in preparedness across study arms. Occurrence of post-intervention ACP conversations did not influence perceived preparedness; however, spokespersons who used an ACP decision aid reported more conversations. Four themes emerged to explain spokespersons' perceived preparedness: (1) perceptions about ACP; (2) level of comfort with uncertainty; (3) relational issues; and (4) personal characteristics. Regarding future intentions, it emerged that spokespersons believed their knowledge of patient wishes, as well as other personal, relational, situational, and emotional factors would influence their surrogate decisions.

Factors extrinsic to specific ACP interventions influence how prepared spokespersons feel to act as spokespersons. Understanding these factors is important for understanding how to improve concordance between patients' stated end-of-life wishes and surrogate decisions.

NCT02429479

Understanding the role of nonphysicians in Physician Orders for Life-Sustaining Treatment (POLST) completion is limited.

To examine the role that nurse practitioners (NPs) play in POLST completion and differences between NPs and physicians in POLST orders.

Retrospective observational study.

A total of 3829 POLST forms submitted to the West Virginia (WV) e-Directive Registry between July 1, 2018 and June 30, 2019, which was completed by 98 NPs and 511 physicians.

POLST forms completed and orders in POLST Section A and Section B by all physicians and NPs according to practice (primary care, palliative care, hospital, and nursing home) and by palliative care physicians and NPs only.

NPs completed almost twice as many forms on average as physicians (9.54 ± 20.82 vs. 5.66 ± 17.18, p = 0.0064). NPs constituted 16.10% (98/609) of the clinicians writing POLST forms but completed 24.40% (935/3829) of the forms (p < 0.001). Compared with physicians' orders, a greater percentage of NP's orders was for do-not-resuscitate in Section A (87.20% vs. 72.60%, p < 0.001) and comfort measures in Section B (42.90% vs. 33.10%, p < 0.001). There was a greater percentage of NPs in palliative care practice than physicians (23.50% vs. 6.07%, p < 0.001), and palliative care NPs completed 64.20% (600/935) of the forms submitted by NPs compared with palliative care physicians who completed 17.90% (517/2894) of the forms submitted by physicians (p < 0.001).

In WV, physician and NP POLST completion differs based on practice. NPs completed significantly more POLST forms on average and more often ordered comfort measures. NPs can play a significant role in POLST completion.

Much end-of-life care is provided in hospital, yet little is known about the delivery of palliative care during end-of-life hospitalizations.

To characterize the level of palliative care involvement across hospitalizations in the last year of life.

A population-based retrospective cohort study of adults in Ontario, Canada, who died between April 1, 2012, and March 31, 2017, and had at least one acute care hospitalization in their last year of life. Using linked administrative health data, we developed a hierarchy of inpatient palliative care involvement reflecting the degree to which care was delivered with palliative intent. This hierarchy was based on palliative care diagnosis and service provider codes on hospitalization records and physician claims. We examined variations in the level of palliative care involvement across key patient characteristics.

In the last year of life, 65.1% of hospitalizations had no indication of palliative care involvement, 16.7% had a low level of involvement, 13.5% had a medium level of involvement, and 4.7% had a high level of involvement. Most hospitalizations with palliative care involvement (85.6%) occurred in the two months before death. Compared to patients who received no inpatient palliative care, patients who received a high level of palliative care involvement tended to be younger, died of cancer, resided in urban or lower income neighborhoods, and had fewer chronic conditions.

While many hospitalizations occurred in the last year of life, the majority did not involve palliative care, and very few had a high level of palliative care involvement.

Since legalization of medical assistance in dying (MAiD) in Canada on June 17, 2016, there has been limited information regarding how outcomes of those requesting MAiD relates to comorbidity, social circumstances, geographic location, and access to care. This study aims to identify characteristics associated with the completion of MAiD, once requested, with specialist palliative care (SPC) as the primary exposure of interest.

This retrospective cohort study consists of all patients in Nova Scotia who requested MAiD between June 17, 2016 and December 31, 2018 and were deceased at the time of analysis (n = 383). Descriptive statistics and logistic regression were performed.

A smaller proportion of patients who completed MAiD were seen in consultation by SPC (69.4% vs. 81.1%, p = 0.01). SPC was associated with decreased odds of completing MAiD (odds ratio [OR] 0.59, 95% confidence interval [CI] 0.36–0.96, p = 0.04), as was cohabitation (OR 0.64, 95% CI 0.41–0.99, p = 0.05) and Charlson comorbidity index >6 (OR 0.64, 95% CI 0.41–0.99, p = 0.05).

SPC consultation was associated with significantly reduced likelihood of MAiD completion. Contributing factors may include differences in access to SPC services, those completing MAiD being more likely to decline a consultation with SPC, or the impact of SPC upon patient preferences and access to MAiD. While the interface between SPC and MAiD is in its early stages, our findings are supportive of a more integrated approach to coordination of SPC and MAiD services.

The COVID-19 pandemic resulted in a surge of critically ill patients that strained health care systems throughout New York City in March and April of 2020. At the peak of the crisis, consults for palliative care increased four- to sevenfold at NewYork-Presbyterian (NYP), an academic health care system with 10 campuses throughout New York City. We share our challenges, solutions, and lessons learned to help peer institutions meet increased palliative care demands during future crises and address pre-existing palliative care subspecialist shortages during nonpandemic times.

In response to the increased demand, palliative care physician and administrative leadership at NYP piloted multiple creative care models to expand access to palliative care outpatient and inpatient services. The care models included virtual outpatient management of existing patients, embedded palliative care staff, education for providers, multidisciplinary family support, hospice units (which allowed for family visitation), and team expansion through training other disciplines (primarily psychiatry) and deploying an ePalliative Care service (staffed by out-of-state volunteers).

Our comprehensive response successfully expanded the palliative care team's reach, and, at the height of the pandemic, allowed our teams to meet the increased demand for palliative care consults. We learned that flexibility and adaptability were critical to responding to a rapidly evolving crisis. Physician and family feedback and preliminary data suggest that virtual outpatient visits, embedded staff, hospice units, and team expansion through training other disciplines and deploying ePalliative Care services were impactful interventions.

Music is a powerful therapeutic intervention to promote physical and psychological health, healing, and well-being. In pediatric palliative care, music therapists are often involved in preloss care. Heartbeat recordings (HBRs) synchronize the rhythm of the heartbeat into a favorite song. In preloss care, HBRs show promise in helping parents of children with progressive neurodegenerative illnesses (PNDI) cope with their chronic sorrow and the loss of their child.

To explore the lived experience of HBRs for bereavement in the lives of parents of children with PNDI.

Phenomenological study.

Purposeful sample of 11 English-speaking parents of children with PNDI receiving palliative care services in an academic pediatric hospital were interviewed three months after receiving their child's HBR.

A semistructured interview guide was used to collect data concurrently with the mind mapping process.

Data from interviews revealed 4 major themes and 10 subthemes: (1) Bifocal View (parental lens vs. medical lens); (2) Navigating Life and Relationships (caregiver fatigue, grief and loss, marriage, job, brought us together, paying it forward); (3) Coping through Spirituality; and, (4) Legacy Creation (HBR as a connection, song selection).

Parents of children with PNDI experience chronic sorrow. The HBR assisted in meaning-making that validated the child's life and supported the parents' expression of grief and their ability to cope. Further research is needed to validate the impact of HBRs in diverse populations.

When patients' goals of care have shifted toward comfort, treatment should focus on alleviating symptoms rather than prolonging life at the expense of comfort.

To determine whether the number of noncomfort medications is associated with deprescribing in patients seen by a home-visiting palliative care physician.

Single-centre retrospective chart review of patients cared for in the home setting by a specialty palliative care program to determine factors associated with deprescribing. All medications on initial consult were classified as comfort, possibly for comfort, and definitely not for comfort (DNC). Patients were stratified depending on whether intentional deprescribing occurred. Data were analyzed for associations between deprescribing and other variables: number and proportion of DNC medications, diagnosis, palliative performance scale (PPS), number of encounters, code status, preferred place of death, and time to death.

Study population included 80 patients followed by specialist home-visiting palliative physicians in a tertiary center. Inclusion criteria were adult patients with PPS ≤60%, initially seen by a home-visiting palliative physician between 2016 and 2018 and followed for at least 60 days or until death.

Deprescribing occurred in 44% of study patients within 60 days. Median number of DNC medications was 3 in the deprescribed group and 0 in the nondeprescribed group (p < 0.001). Proportion of DNC medications was 29% in the deprescribed group and 15% in the nondeprescribed group (p < 0.01).

Deprescribing is associated with an increased number and proportion of DNC medications at the time of initial in-home palliative assessment. Deprescribing rates varied greatly between different home-visiting palliative providers.

Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO^® (Extension for Community Healthcare Outcomes) is a model for delivering technology-enabled interprofessional education and cultivating a community of practice among HCPs who care for children with life-limiting illness.

To develop, implement, and evaluate the Project ECHO model within the pediatric palliative care (PPC) context. Specific objectives were to evaluate (1) participation levels, (2) program acceptability, (3) HCP knowledge changes, (4) HCP self-efficacy changes, and (5) perceived practice changes after six months.

An interprofessional PPC curriculum was informed by a needs assessment. The curriculum was delivered through monthly virtual 90-minute TeleECHO sessions (didactic presentation and case-based learning) from January 2018 to December 2019. The program was freely available to all HCPs wishing to participate.

A mixed-methods design with repeat measures was used. Surveys were distributed at baseline and six months to assess outcomes using 7-point Likert scales. Descriptive and inferential statistical analyses were conducted. The study was approved by the Research Ethics Board at the Hospital for Sick Children.

Twenty-four TeleECHO sessions were completed with a mean of 32 ± 12.5 attendees. Acceptability scores (n = 43) ranged from 5.1 ± 1.1 to 6.5 ± 0.6. HCPs reported improvements in knowledge and self-efficacy across most topics (11 out of 12) and skills (8 out of 10) with demonstrated statistical significance (p < 0.05). Most participants reported positive practice impacts, including enhanced ability to provide PPC in their practice.

Project ECHO is a feasible and impactful model for fostering a virtual PPC-focused community of practice among interprofessional HCPs.

Although clinic-based palliative care (PC) services have spread in the United States, little is known about how they function, and no studies have examined clinics that predominantly serve safety net populations.

To describe the PC clinics operating in safety net institutions in California.

Survey completed by PC program leaders

PC programs in California, USA, safety net medical centers.

Descriptive statistics regarding staffing, clinic processes, patients served, and finances.

Twelve of 15 programs responded; 10 clinics that met inclusion criteria. All 10 programs use multiple disciplines to deliver care. Average full-time equivalent (FTE) used to staff an average of 2.75 half-day clinics per week includes 0.69 physician FTE, 0.51 nurse practitioner FTE, 1.37 nurse FTE, 0.79 social worker FTE, and 0.52 chaplain FTE. Clinic session schedules include an average of 1.88 new patient appointment slots (standard deviation [SD] = 0.44) and four follow-up appointment slots (SD = 1.95). The nine programs that reported on clinic volumes see 1081 patients annually combined, with an annual average of 120 (SD = 48.53) per program. Encounters per patient averaged 3.04 (SD = 1.59; eight programs reporting). All reported offering seven core PC services: pain/symptom management, comprehensive assessment, care coordination, advance care planning, PC plan of care, emotional support, and social service referrals. An average of 77.4% (SD = 26.81) of clinic financing came from the health systems.

Our respondents report using an interdisciplinary team approach to deliver guideline-concordant specialty PC. More research is needed to understand the most effective and efficient staffing models for meeting the PC needs of the safety net population.

In February 2020, the German Federal Constitutional Court revoked a law that had made assisted suicide (AS) a potentially punishable offense. As a result, appropriate legal regulations for AS, including physician-assisted suicide (PAS), must be made. The medical curriculum should be adapted correspondingly.

To explore medical students' knowledge of the legal situation, attitudes toward PAS and wishes regarding PAS education.

A cross-sectional survey was conducted.

A questionnaire was distributed to all fourth-year students (n = 331) at a German medical school.

Students had a predominantly favorable attitude toward PAS. A majority considered AS to be a task that should be assigned to doctors (71%) and were willing to perform PAS (68%). Education on PAS was explicitly desired. Most participants had only limited knowledge of the legal situation.

Medical students are largely in favor of PAS. A structured and interdisciplinary approach to PAS education is needed.

Understanding challenges of family caregivers within specific palliative care contexts is needed.

To describe the challenges of family caregivers of patients with cancer who receive outpatient palliative care.

We summarized the most common and most challenging problems for 80 family caregivers of cancer patients receiving outpatient palliative care in the midwestern United States.

Caregiver worry and difficulty managing side effects or symptoms other than pain, constipation, and shortness of breath were most common. “Financial concerns” was cited most as a “top 3” problem. Almost half of caregivers reported “other” problems, including family members, patient physical function, care coordination, and patient emotional state.

The most common and most challenging problems of family caregivers of cancer patients receiving outpatient palliative care may differ from those experienced in other serious illness care contexts. Comparative studies on caregiver problems across the cancer care continuum can help develop and refine interventions.

Recognizing delirium phenomenology (DP) aids the early diagnosis of this syndrome and improves quality of life in patients with advanced cancer. The aim of this study was to identify the neurobehavioral and cognitive patterns of delirium-related symptoms in persons with advanced cancer.

We conducted an observational comparative prospective study on delirium in patients with advanced cancer in different palliative care settings, assessing the presentation/evolution of DP with the Memorial delirium assessment scale (MDAS).

Two hundred twenty-seven patients were enrolled on hospital/hospice admission. Of these, 57 were admitted with delirium, 170 without delirium, and 31 developed delirium during hospitalization. Of the 88 patients admitted with delirium or who developed it during hospitalization, only 32 underwent two consecutive MDAS evaluations (at diagnosis and after one week). Delirium resolved in 22 patients (first average MDAS score 10.08 vs. second 3.6 [p < 0.001]). Disorientation, short-term memory, and memory span were altered in all patients with unresolved delirium. The same features were altered in 18 (80%), 17 (80%), and 16 (70%) of the patients with resolved delirium, respectively, and in 58 (35%), 114 (67%), and 38 (23%) of no-delirium patients, respectively.

Cognitive-related symptoms appear to be the most prevalent and earliest signs of DP in patients with advanced cancer.

To compare symptom prevalence and relief in residents who died in nursing homes with residents who were acutely referred to hospitals.

Data on symptoms during the last week of life from the Swedish Register of Palliative Care (SRPC).

Nursing homes (n = 1903 deaths) and hospitals in Sweden (n = 202 nursing home residents who were admitted to hospital before death). Data were retrieved on August 24, 2020.

Residents who died in hospitals had more breakthrough symptoms of breathlessness (60% vs. 31%, p < 0.0001) and delirium (41% vs. 25%, p < 0.0001) than those who died in nursing homes. When symptoms were present, complete symptom relief was seen less often in hospitals compared with nursing homes (breathlessness, 28% vs. 47%, p < 0.001; delirium, 10% vs. 35%, p < 0.0001; respiratory secretions, 30% vs. 55%, p < 0.0001).

Despite access to oxygen and pharmacologic/nonpharmacologic therapies in hospitals, symptom relief in dying nursing home residents acutely admitted to hospitals was lower compared with those who died in nursing homes, possibly because of differences in patient characteristics.

Acupuncture is a classical complementary therapy, but benefits in palliative cancer pain are still unclear due to lack of consistent evidence.

To comprehensively evaluate the effectiveness of acupuncture and derived therapies (such as electroacupuncture, laser acupuncture, and transcutaneous electrical nerve stimulation) for analgesia in palliative cancer care based on both single-arm and controlled trials.

Eight databases were searched from inception to August 31, 2020. Both single-arm trials and controlled trials were included. The primary outcome was the change in pain intensity, as evaluated by the numeric rating scale (NRS) and the visual analog scale.

Adults with cancer.

Forty-one controlled studies with 2685 participants and 18 single-arm studies with 1084 participants were included. For controlled trials, meta-analysis indicated that acupuncture and derived therapies in addition led to greater reductions in the NRS score than conventional analgesics alone (weighted mean difference [WMD]: 1.33 [0.85–1.82], p < 0.001). For single-arm trials, meta-analysis showed that both the immediate effect (WMD: 1.57 [1.43–1.71], p < 0.001) and long-term longitudinal effect (WMD: 1.81 [1.25–2.37], p < 0.001) of acupuncture on analgesia were positive, as evaluated by the NRS, respectively. The benefits of acupuncture and derived therapies were also seen in quality of life and the global improvement rate. LI4 (Hegu) was the most frequently used acupoint.

This systematic review supported the application of acupuncture and derived therapies for managing pain during palliative cancer care from two dimensions. Further studies could explore the effect of acupuncture on other predominant symptoms in palliative cancer patients.