Journal of Palliative Medicine

Pain is a widely neglected symptom in patients with amyotrophic lateral sclerosis (ALS), even though it may be common and have a significant impact on the quality of life.

The aim of this study was to determine the frequency and characteristics of pain and its treatment in ALS patients.

A multicenter cross-sectional study.

Eighty patients with ALS from eight hospitals.

Data on demographics, functional status, and pharmacological treatment were collected. The Barthel Index (BI) was used to assess functional status. Pain was measured using the 0–5-point Wong-Baker FACES Pain Rating Scale.

Pain was reported by 53.8% of ALS patients, and 36.3% reported receiving pain medication. Opioids were the drugs most commonly used to treat pain. The differences in pain frequency according to functional status were not statistically significant (p = 0.38). The pain intensity in patients whose functional status was total dependence (BI 0–20, 2.5 ± 1.2) was significantly worse than that in those with better functional status (BI 21–60, 1.4 ± 0.7; BI 61–99, 1.4 ± 0.5; p < 0.01).

Our study indicates that all patients with ALS have the potential to suffer from pain, the intensity of which increases with decreased functional status.

Evidence about the unique palliative care needs of patients with acute myeloid leukemia (AML) is limited. Improving the care of these patients will require a better understanding of their unmet needs, including symptom burden at the end of life, and patterns of healthcare utilization.

To describe AML patients' experiences in the last six months of life regarding symptom burden, blood product utilization, and use of palliative care services.

Exploratory analysis of prospectively collected patient-reported outcomes and healthcare utilization data during the last six months of life among 33 AML patients who died during a longitudinal observational study.

Symptom burden, quality of life (QOL), and psychological distress worsened with proximity to death. Of the 26 patients with utilization data, most (n = 24; 92.4%) were hospitalized in the last month of life, with 26.9% (n = 7) dying in the intensive care unit. Patients required a median of 16 red blood cell transfusions in the last six months of life, and those with a high transfusion burden in the last month of life had a higher rate of in-hospital death (blood transfusions: p < 0.01; platelet transfusions: p = 0.03). Only six patients enrolled in hospice (23.1%).

Patients with AML have marked symptoms and QOL impairments that escalate in the final six months of life. Patients entering the healthcare system for active cancer treatment are likely to continue disease-oriented care until death. High rates of hospitalization and blood product transfusion are a direct barrier to transitioning to hospice care.

The skin fixative used in Mohs chemosurgery contains zinc chloride and is referred to as Mohs paste (MP). However, MP shows a remarkable change in rheological characteristics after its preparation.

To prepare an MP with stable rheological characteristics, we prepared a modified MP (mMP) using zinc oxide 10% single ointment (Zn _{_ointment} ), which is an oil-based ointment.

We evaluated mMP by determining its rheological characteristics, depth of tissue fixation, and observation of the tissue surface after treatment.

The viscosity of mMP increased after three months. However, the treatment-dependent viscosity of mMP could be obtained by mixing with glycerin. The viscosity and spreadability of mMP _{_3mth} , which was three months after preparation, were 1992.0 ± 376.5 Pa·s and 2.1 ± 0.1 cm, respectively. In contrast, the viscosity and spreadability of MP mixed with glycerin were 436.9 ± 0.0 Pa·s and 2.8 ± 0.0 cm, respectively. The fixed invasion depth of MP was significantly higher than that of mMP (p < 0.05).

This study of a mixture of MP and Zn _{_ointment} showed that the viscosity of mMP could be adjusted with glycerin. Also, the tissue fixation of mMP progressed slowly compared with that of MP. This finding suggests that mMP is effective and safe for Mohs treatment.

End-of-life decisions (ELDs) are embedded in clinical, sociocultural, political, economic, and ethical concerns. In 2014, the Council of Europe (CoE) through its Committee on Bioethics launched the “Guide on the decision-making process regarding medical treatment in end-of-life situations,” aiming at improving decision-making processes and empowering professionals in making ELDs.

To analyze if end-of-life decision making in palliative care (PC) is consistent with this Guide and to identify if disputed/controversial issues are part of current ELDs.

Qualitative secondary analysis.

Four qualitative datasets, including 44 interviews and 9 team observation field notes from previous studies with PC teams/professionals in Portugal.

An analysis grid based on the abovementioned guide was created considering three dimensions: ethical and legal frameworks, decision-making process, and disputed/controversial issues.

The majority of the professionals considered the ethical principle of autonomy paramount in end-of-life decision making. Justice and beneficence/nonmaleficence were also valued. Although not mentioned in the Guide, the professionals also considered other ethical principles when making ELDs, namely, responsibility, integrity, and dignity. Most of the interviewees and field notes referred to the collective interprofessional dimension of the decision-making process. Palliative sedation and the wish to hasten death were the most mentioned disputed/controversial issues. The nature, limitations, and benefits of qualitative secondary analysis are discussed.

End-of-life decision-making processes made by Portuguese PC teams seem to be consistent with the guidelines of the CoE. Further research is needed about disputed/controversial issues and the actual use, effectiveness, and impact of ethical guidelines for end-of-life decision making on professionals' empowerment and for all parties involved.

Palliative care (PC) is often misunderstood as exclusively pertaining to end-of-life care, which may be consequential for its delivery. There is little research on how PC is operationalized and delivered to cancer patients enrolled in clinical trials.

We sought to understand the diverse perspectives of multidisciplinary oncology care providers caring for such patients in a teaching hospital.

We conducted qualitative semistructured interviews with 19 key informants, including clinical trial principal investigators, oncology fellows, research nurses, inpatient and outpatient nurses, spiritual care providers, and PC fellows. Questions elicited information about the meaning providers assigned to the term “palliative care,” as well as their experiences with the delivery of PC in the clinical trial context. Using grounded theory, a team-based coding method was employed to identify major themes.

Four main themes emerged regarding the meaning of PC: (1) the holistic nature of PC, (2) the importance of symptom care, (3) conflict between PC and curative care, and (4) conflation between PC and end-of-life care. Three key themes emerged with regard to the delivery of PC: (1) dynamics among providers, (2) discussing PC with patients and family, and (3) the timing of PC delivery.

There was great variability in personal meanings of PC, conflation with hospice/end-of-life care, and appropriateness of PC delivery and timing, particularly within cancer clinical trials. A standard and acceptable model for integrating PC concurrently with treatment in clinical trials is needed.

Palliative care aims to reduce physical suffering and the emotional, spiritual, and psychosocial distress of life-limiting illness. Palliative care is a human right, yet there are vast disparities in its provision: of the 40 million people globally in need of palliative care, less than 10% receive it, largely in high-income countries. There is a particular paucity of data on palliative care needs across the spectrum of incurable disease in Ethiopia.

The aims of this research were to assess the overall burden of life-limiting illness, the costs associated with life-limiting illness, and barriers to accessing palliative care in Ethiopia.

Mixed-methods case-series.

One hundred adults (mean age: 43.7 ± 14 years, 64% female) were recruited at three outpatient clinics (oncology, HIV, noncommunicable disease) and hospice patient homes in Ethiopia.

Four internationally validated questionnaires were used to assess physical symptoms, psychosocial distress, and disability. In-depth interviews gauged poverty level, costs of care, and end-of-life preferences. Qualitative data were analyzed by thematic content, quantitative data by standard descriptive, frequency and regression analyses.

In oncology, 95.5% of the population endorsed moderate or severe pain, while 24% were not prescribed analgesia. Importantly, 80% of the noncommunicable disease population reported moderate or severe pain. The mean psychosocial distress score was 6.4/10. Severe disability was reported in 26% of the population, with mobility most affected. Statistically significant relationships were found between pain and costs, and pain and lack of well-being. Very high costs were reported by oncology patients. Oncology withstanding, the majority of subjects wished to die at home. Oncology patients cited pain control as the top reason they preferred a hospital death.

There are extensive unmet palliative care needs in Ethiopia. Untreated pain and high costs of illness are the major contributors to psychosocial distress and financial crisis in this Ethiopian population.

The aim of this study was to illustrate the characteristics of patients with palliative care (PC) needs, early identified by general practitioners (GPs), and to analyze their care process in home PC services.

Early identification and service integration are key components to providing quality palliative care (PC) services ensuring the best possible service for patients and their families. However, in Italy, PC is often provided only in the last phase of life and for oncological patients, with a fragmented service.

Multicenter prospective observational study, lasting in total 18 months, implemented in a sample of Italian Home Palliative Care Units (HPCUs), enrolling and monitoring patients with limited life expectancy, early identified by 94 GPs. The study began on March 1, 2014 and ended on August 31, 2015.

Nine hundred thirty-seven patients, out of a total pool of 139,071, were identified by GPs as having a low life expectancy and PC needs. Of these, 556 (59.3%) were nononcological patients. The GPs sent 433 patients to the HPCUs for multidimensional assessment, and 328 (75.8%) were placed in the care of both settings (basic or specialist). For all patients included in the study, both oncological and nononcological patients, there was a high rate of death at home, around 70%.

This study highlights how a model based on early identification, multidimensional evaluation, and integration of services can promote adequate PC, also for noncancer patients, with a population-based approach.

Interprofessional Education (IPE) is an important component of medical education. Rotations with palliative care interdisciplinary teams (IDTs) provide an optimal environment for IPE and teaching teamwork skills.

Our objective was to assess the learning of senior medical students during a palliative care rotation.

A constant comparison method based on grounded theory was used in this qualitative study.

Senior medical students completed a semi-structured reflective writing exercise after a required one-week palliative care clerkship. Sixty randomly selected reflective writings were analyzed.

The reflective writings were analyzed to evaluate the student's experiences.

Dominant themes identified were related to teams and teamwork. Eight specific themes were identified: value of IDT for team members; value of IDT for patient/family; importance of each team member; reliance on other team members; roles of team members; how teams work; team communication; and interdisciplinary assessment and care planning. Students described exposure to novel experiences and planned to incorporate newly learned behaviors in their future practice.

By participating in palliative care IDTs, medical students consistently learned about teamwork within healthcare. Additionally, they learned the importance of such teamwork to patients and the team itself. Rotations with palliative care IDTs have a significant role to play in IPE and preparing medical students to practice on teams.

On January 1, 2016, Medicare implemented a new “two-tiered” model for hospice services, with per diem rates increased for days 1 through 60, decreased for days 61 and greater, and service intensity add-on payments made retrospectively for the last seven days of life.

To estimate whether the Medicare hospice benefit's potential for cost savings will change as a result of the January 2016 change in payment structure.

Analysis of decedents' claims records using propensity score matching, logistic regression, and sensitivity analysis.

All age-eligible Medicare decedents who received care and died in North Carolina in calendar years 2009 and 2010.

Costs to Medicare for hospice and other healthcare services.

Medicare costs were reduced from hospice election until death using both 2009–2010 and new 2016 payment structures and rates. Mean cost savings were $1,527 with actual payment rates, and would have been $2,105 with the new payment rates (p < 0.001). Cost savings were confirmed by reducing the number of days used for cost comparison by three days for those with hospice stays of at least four days ($4,318 using 2009–2010 rates, $3,138 for 2016 rates: p < 0.001). Cost savings were greater for males ($3,393) versus females ($1,051) and greatest in cancer ($6,706) followed by debility and failure to thrive ($5,636) and congestive heart failure ($1,309); dementia patients had higher costs (+$1,880) (p < 0.001). When adding 3 days to the comparison period, hospice increased costs to Medicare.

Medicare savings could continue with the 2016 payment rate change. Cost savings were found for all primary diagnoses analyzed except dementia.

To provide preference-sensitive care, we propose that clinicians might routinely inquire about their patients' bucket-lists and discuss the impact (if any) of their medical treatments on their life goals.

This cross-sectional, mixed methods online study explores the concept of the bucket list and seeks to identify common bucket list themes. Data were collected in 2015–2016 through an online survey, which was completed by a total of 3056 participants across the United States. Forty participants who had a bucket list were identified randomly and used as the development cohort: their responses were analyzed qualitatively using grounded theory methods to identify the six key bucket list themes. The responses of the remaining 3016 participants were used for the validation study. The codes identified from the development cohort were validated by analyses of responses from 50 randomly drawn subjects from the validation cohort. All the 3016 validation cohort transcripts were coded for presence or absence of each of the six bucket list themes.

Around 91.2% participants had a bucket list. Age and spirituality influence the patient's bucket-list. Participants who reported that faith/religion/spirituality was important to them were most likely (95%) to have a bucket list compared with those who reported it to be unimportant (68.2%), χ² = 37.67. Six primary themes identified were the desire to travel (78.5%), desire to accomplish a personal goal (78.3%), desire to achieve specific life milestones (51%), desire to spend quality time with friends and family (16.7%), desire to achieve financial stability (24.3%), and desire to do a daring activity (15%).

The bucket list is a simple framework that can be used to engage patients about their healthcare decision making. Knowing a patient's bucket list can aid clinicians in relating each treatment option to its potential impact (if any) on the patient's life and life goals to promote informed decision making.

Integrating palliative care into standard oncology care has been recommended for cancer patients. Early palliative care is associated with less aggressive treatment at the end of life.

To describe cancer patients receiving palliative care in Brazil, determining the time from entry into palliative care to death, and investigating whether late referral to palliative care is associated with aggressive end-of-life treatment.

This was a cross-sectional study of cancer patients receiving palliative care in Brazil.

Subjects were 2985 cancer patients ≥18 years of age who received at least two palliative care visits at the São Paulo State Cancer Institute, in the city of São Paulo, Brazil, and died between 2010 and 2013.

We evaluated the time from the first palliative care consult to death, stratifying cases by the timing of entry into palliative care (≥3 or <3 months before death). The associations between early palliative care and indicators of aggressive treatment were assessed by Pearson's chi-square test and Fisher's exact test.

The overall median time between entry into palliative care and death was 34 days (mean, 72 days) and was significantly shorter in 2013 than in 2010 (p < 0.001). The number of emergency department visits was significantly lower among the patients who entered palliative care earlier (p < 0.001).

Among cancer patients in Brazil, late referral to palliative care is common. Patients who enter palliative care earlier appear to receive less aggressive end-of-life treatment.

Between 69% and 82% of patients with advanced chronic illness require palliative care (PC). The NECPAL CCOMS-ICO^© tool can identify these individuals. Tools to estimate survival are available, but have limited predictive ability, and therefore we sought to assess if NECPAL could improve survival prediction.

To describe hospital mortality, survival rates, and related variables in a sample of inpatients identified with the NECPAL tool.

Cross-sectional study with longitudinal cohort follow-up. Sociodemographic and clinical data were analyzed. A predictive model (Cox regression analysis) was performed to assess survival.

Patients admitted to a tertiary hospital. Included patients were considered to be especially affected by their chronic condition and NECPAL+ patients (surprise question [SQ]+ plus ≥1 of the tool's other three criteria). Patients were classified into three subgroups: non-NECPAL (either SQ- or not meeting any additional NECPAL criteria); NECPAL I–II (SQ+ with one to two additional criteria); and NECPAL III (SQ+ with all three additional criteria).

Of the 602 inpatients, 236 (39.2%) were included. Of these, 49 (20.3%) died during hospitalization: 14 (13.3%) were NECPAL I–II; 34 (35.1%) were NECPAL III; and none were non-NECPAL (p < 0.001). At two years, 146 deaths (61.9%) were observed: 9 (26.5%) non-NECPAL; 57 (54.3%) NECPAL I–II; and 80 (82.5%) NECPAL III (p < 0.001). Median survival was 9.1 months. Variables associated with higher mortality were NECPAL III classification (hazard ratio [HR]: 1.75 [1.19–2.57]); in need of PC (HR: 2 [1.27–3.13]); dysphagia (HR: 1.7 [1.12–2.58] 6); cancer (HR: 3.21 [2.19–4.71]); and age >85 years (HR: 2.52 [1.46–4.35]). At six months, the NECPAL had an area under the curve (AUC) of 0.7 (95% confidence interval [CI]: 0.632–0.765), and at 24 months, the NECPAL AUC was 0.717 (95% CI: 0.650–0.785).

The NECPAL CCOMS-ICO^© tool can improve the prediction of mortality. The presence of all three NECPAL criteria (NECPAL III) increases the tool's predictive ability.

Status epilepticus seizures are distressing events for hospice and palliative care patients. Currently, rectal diazepam is the only abortive therapy approved by the U.S. Food and Drug Administration for seizures occurring out of hospital. However, transmucosal (buccal and intranasal) midazolam hydrochloride is a less expensive, equally effective, and a more socially acceptable alternative.

To explore the use of transmucosal midazolam in out-of-hospital hospice patients in the State of Alabama.

A cross-sectional survey was used explore hospice providers' knowledge and use of transmucosal midazolam in clinical practice within Alabama.

Hospice providers (physicians, nurses, and administrators) in the State of Alabama (n = 27).

An electronic survey was used to elicit transmucosal midazolam use among hospice providers.

Transmucosal midazolam has been documented throughout the literature and reported by expert clinicians as an efficacious, safe, and appropriate pharmaceutical intervention for the abortive treatment of seizures in adult and pediatric out-of-hospital patients. However, barriers to the use of transmucosal midazolam with hospice patients included unfamiliarity with transmucosal route and lack of provider orders. None of the participants reported transmucosal midazolam use in out-of-hospital hospice settings.

Evidence in the literature supports the use of transmucosal midazolam; however, further research is necessary to understand and address barriers in a more diverse and generalizable population.

Patients with advanced cancer experience severe physical, psychosocial, and spiritual distress requiring palliative care (PC). There are limited literature regarding characteristics and outcomes of patients evaluated by PC services at public hospitals (PHs).

To compare the outcomes of advanced cancer patients undergoing PC at a PH and those at a comprehensive cancer center (CCC). We reviewed 359 consecutive advanced cancer patients (PH, 180; CCC, 179) undergoing PC. Symptoms and outcomes at consultation and first follow-up visit were assessed. Summary statistics were used to describe patient characteristics and outcomes.

The PH and CCC patients differed significantly according to race: 23% white, 39% black, and 36% Hispanic patients at the PH versus 66% white, 17% black, and 11% Hispanic patients at the CCC (p < 0.0001). Ninety-six (53%) patients at PH and 178 (99%) at the CCC had health insurance (p < 0.0001). Symptoms at consultation at PH and CCC were pain (85% and 91%, respectively; p = 0.0639), fatigue (81% and 94%, respectively; p = 0.0003), depression (51% and 69%, respectively; p = 0.0013), anxiety (47% and 75%, respectively; p < 0.0001), and well-being (63% and 93%, respectively; p < 0.0001). Multiple interventions provided: opioids, reviews for polypharmacy, constipation management, and interdisciplinary counseling. Median time from outpatient consultation to follow-up was 29 days(range, 1–119 days) at the PH and 21 days (range, 1–275 days) at the CCC (p = 0.0006). Median overall survival time from outpatient consultation was 473 days (95% confidence interval [CI], 205–699 days) at PH and 245 days (95% CI, 152–491 days) at CCC (p = 0.3408).

Advanced cancer patients at both institutions frequently had multiple distressing physical and emotional symptoms, although the frequency was higher at CCC. The median overall survival duration was higher at the PH. More research is needed.

Drug interactions are a common cause for escalation of debilitating symptoms in palliative care patients. CYP3A is the most relevant CYP enzyme in humans involved in metabolism of about half of all available pharmaceuticals.

To increase knowledge about the CYP3A enzyme and the impact of drug interactions on its activity to improve dosing in palliative care patients.

The prospective clinical trial uses a secure method of analyzing CYP3A activity in humans: Administration of a marker substance followed by the determination of its blood concentrations as well as the concentrations of its metabolite at certain points of time and corresponding metabolic clearance calculations.

The ongoing trial is carried out at a palliative care unit under real-life clinical conditions.

A four-hour pharmacokinetic profile after oral administration of the marker substance (microdose of midazolam) will be obtained from each enrolled patient. Plasma concentrations of midazolam and its primary metabolite will be quantified by mass spectrometry techniques. CYP3A activity will be calculated as partial metabolic clearance from a limited sampling area under the curve. All other drugs taken by the participating patients will be considered as well as recent blood test results and the patients' diagnoses.

This is the first prospective study dealing with drug metabolism in patients on a palliative care unit. The trial is based on reliable and established methods aiming to provide improved dosing regimens and thus optimize pharmacological therapies in this specialty.

In France, cancer has become the leading cause of death. Intensive care units (ICU) focus on survival, which may not be an appropriate setting to provide palliative care (PC) as needed by cancer patients and families.

To describe the cancer patients who died in the ICU in 2010 in a French academic medical center.

Retrospective study

We reviewed medical records of all cancer patients who died in the ICU in 2010. The information collected from electronic medical records included patient sociodemographics and clinical characteristics, PC service referral, and the date of first contact with PC.

Among the 536 cancer patients who died in 2010, 42 (8%) died in the ICU. The cancers were hematological (21%), gastrointestinal (21%) and head and neck (21%). One patient had a PC referral versus 45% in the total population (p < 0.001) and the referral was the same day as the death. Eight (19%) patients had chemotherapy during their last month of life and 2 during the ICU hospitalization. Seventy-four per cent of patient admissions to the ICU related directly to malignancy. The mean time between diagnosis of cancer and death was 2.3 years (standard deviation, 4.4).

: Our work highlights the need for early PC in the illness trajectory of cancer patients to prevent the transfer of dying patients to the ICU. More studies are needed to understand the decision making leading to such transfers.

Sleep fragmentation is common among those with advanced serious illness. Nonpharmacological interventions to improve sleep have few, if any, adverse effects and are often underutilized in these settings.

We aimed to summarize the literature related to nonpharmacological interventions to improve sleep among adults with advanced serious illness.

We systematically searched six electronic databases for literature reporting sleep outcomes associated with nonpharmacological interventions that included participants with advanced serious illness during the period of 1996–2016.

From a total of 2731 results, 42 studies met the inclusion criteria. A total of 31 individual interventions were identified, each evaluated individually and some in combination with other interventions. Twelve of these studies employed either multiple interventions within an intervention category (n = 8) or a multicomponent intervention consisting of interventions from two or more categories (n = 5). The following intervention categories emerged: sleep hygiene (1), environmental (6), physical activity (4), complementary health practices (11), and mind–body practices (13). Of the 42 studies, 22 demonstrated a statistically significant, positive impact on sleep and represented each of the categories. The quality of the studies varied considerably, with 17 studies classified as strong, 17 as moderate, and 8 as weak.

Several interventions have been demonstrated to improve sleep in these patients. However, the small number of studies and wide variation of individual interventions within each category limit the generalizability of findings. Further studies are needed to assess interventions and determine effectiveness and acceptability.