Journal of Palliative Medicine

Few studies have investigated water balance as a predictor of survival in cancer patients in the last days of life.

To examine the association between extracellular water (ECW), intracellular water (ICW), ratio of ECW to ICW (ECW/ICW), and survival in nonedematous and edematous patients with advanced cancer admitted to a palliative care unit.

A prospective observational study.

Patients with advanced cancer admitted to a palliative care unit.

Upon enrollment, bioelectrical impedance analysis was used to assess ECW, ICW, and body composition. We conducted time-to-event analyses using the Kaplan–Meier method, log-rank test, and univariate and multivariate Cox regression analyses.

A total of 190 of 204 patients who participated in this study had ICW and ECW measures available for analysis. The median survival was 10 days (95% confidence interval [CI] 9–12) days. The median ECW, ICW, and ECW/ICW were 18.9 L, 19.1 L, and 1.0 for 72 nonedematous patients, and 21.9 L, 20.1 L, and 1.1 for 118 edematous patients, respectively. In univariate Cox regression analysis, ICW ≤20 L was associated with a shorter survival in the nonedematous patients (hazard ratio [HR] 1.92, 95% CI 1.10–3.34, p = 0.02) and a longer survival in the edematous patients (HR 0.61, 95% CI 0.41–0.90, p = 0.01). In multivariable analysis, ICW (≤20 L vs. >20 L) remained an independent prognostic factor in edematous patients (HR 0.64, 95% CI 0.43–0.95, p = 0.03).

Greater ICW was an independent predictor of poorer survival in cancer patients with edema in the last days of life.

Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance.

To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care.

We conducted narrative interviews with parents and analyzed these by using a grounded theory approach.

We interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany.

Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time.

Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.

Multimorbidity and pain are both common among older adults, yet pain treatment strategies for older patients with multimorbidity have not been well characterized.

To assess the prevalence and relationship between multimorbidity and opioid prescribing in hospitalized older medical patients with pain.

We collected demographic, morbidity, pain, and analgesic treatment data through structured review of the electronic medical records of a consecutive sample of 238 medical patients, aged ≥65 years admitted between November 2014 and May 2015 with moderate-to-severe pain by numerical pain rating scale (range 4–10). We used the Cumulative Illness Rating Scale for Geriatrics (CIRS-G) to assess multimorbidity and cumulative illness burden. We examined the relationship between morbidity measures and opioid prescribing at hospital discharge using multivariate regression analysis.

The mean age was 75 ± 8 years, 57% were female and 50% were non-White. Mean CIRS-G total score was 17 ± 6, indicating high cumulative illness burden. Ninety-nine percent of patients had multimorbidity, defined as moderate-to-extremely severe morbidity in ≥2 organ systems. Sixty percent of patients received an opioid prescription at discharge. In multivariate analyses adjusted for age, race, and gender, patients with a discharge opioid prescription were significantly more likely to have higher cumulative illness burden and chronic pain.

Among older medical inpatients, multimorbidity was nearly universal, and patients with higher cumulative illness burden were more likely to receive a discharge opioid prescription. More studies of benefits and harms of analgesic treatments in older adults with multimorbidity are needed to guide clinical practice.

Increasing the total opioid dose is the standard approach for managing uncontrolled cancer pain. Other than simply increasing the opioid dose, palliative care interventions are multidimensional and may improve pain control in the absence of opioid dose increase.

The purpose of this study was to determine the proportion of patients referred to our inpatient palliative care (IPC) team who achieved clinically improved pain (CIP) without opioid dose increase.

We reviewed consecutive patients referred to our IPC team.

Eligibility criteria included (1) taking opioid medication; (2) having ≥2 consecutive visits with the IPC team; and (3) an Edmonton Symptom Assessment Scale (ESAS) pain score ≥4 at consultation.

We assessed patient demographics and clinical variables, including cancer type, opioid prescription data (type, route, and oral morphine equivalent daily dose [MEDD]), presence of opioid rotation, psychological consultation, changes in adjuvant medications (e.g., corticosteroids; antiepileptics—gabapentin and pregabalin; benzodiazepines; and neuroleptics), and achievement of CIP.

Of the 300 patients enrolled, CIP was achieved in 196 (65%) patients. Of CIP patients, 85 (43%) achieved CIP without an increase in MEDD. CIP without MEDD increase was associated with more adjuvant medication changes (p = 0.003), less opioid rotation (p = 0.005), and lower symptom distress scale of ESAS (p = 0.04).

Nearly half of the patients achieved CIP without MEDD increase, suggesting that the multidimensional palliative care intervention is effective in improving pain control in many opioid-tolerant patients without the need to increase the opioid dose.

Latino patients with advanced cancer need culturally responsive, effective psychotherapeutic interventions that can assist them in coping with their diagnosis and improve spiritual and existential well-being and psychological adjustment.

This study describes the cultural and linguistic adaptation of individual meaning-centered psychotherapy for Latinos with advanced cancer.

A mixed-methods, concurrent integrative approach was used for this study, using the ecological validity and cultural adaptation process models as frameworks for cultural adaptation.

Quantitative and qualitative data were collected through (1) a survey of mental health professionals (n = 70) who offer services to Latino cancer patients; (2) a questionnaire for Latino patients with advanced cancer (n = 54), measuring relevant intervention concepts; and (3) in-depth interviews with 24 Latino patients.

Quantitative findings showed that most of the goals and concepts were highly acceptable for patients and providers. The qualitative findings supported adaptations to include using more simple definitions; changing phrases that are challenging to translate and comprehend; using words that are common to all Latino cultures, providing more than one option if needed; simplifying the questions/reflections, as needed; changing the metaphors to be culturally congruent; and modifying content to make it responsive to Latino cultural values and norms.

Findings demonstrate the need for adaptation to achieve the aims of the intervention, accounting for both linguistic and cultural considerations, emphasizing issues related to literacy, cultural and linguistic diversity, cultural values, and culturally congruent content. The mixed-methods approach is described to provide recommendations for clinicians, researchers, and program developers.

Demographic and contextual factors are associated with quality of life (QoL) in older adults and prediagnosis QoL among older adults has important implications for supportive care in older cancer patients.

To examine whether lower educational attainment is associated with poorer QoL among community dwelling older adults just before their diagnosis of lung cancer in a nationally representative sample.

This study used the Surveillance, Epidemiology, and End Results (SEER)-Medicare Health Outcomes Survey (MHOS) dataset, which provides cancer registry data linked with survey data for Medicare Advantage enrollees.

Adults 65 years and older at time of diagnosis with first or only primary lung cancer and with at least one survey before their cancer diagnosis.

Level of education attained was categorized as less than high school (<HS) or at least a high school diploma (≥HS). QoL was calculated based on individual subscale scores from the 36-item Short Form Health Survey (SF-36) until 2006 (Veteran's RAND 12-Item Survey [VR-12] after 2006). Demographic covariates as well as number of comorbidities were adjusted for in multivariable models.

Higher education was positively associated with prediagnosis mental and physical QoL. Other factors associated with lower QoL were Medicaid status and number of comorbidities.

Particular attention should focus on identifying and addressing QoL needs among vulnerable older adults to bolster QoL to mitigate its potential impact on prognosis following a lung cancer diagnosis.

Families are known to be involved in assisted dying and their involvement can be influenced by many factors.

To explore how Swiss families interact with health care professionals and right-to-die associations regarding assisted suicide and their choices around disclosure.

A secondary data analysis on a cross-sectional qualitative interview study conducted in the Italian- and French-speaking parts of Switzerland was conducted. Interviews with 28 bereaved family members were analyzed using framework analysis.

Two main themes were identified: (1) Interactions with physicians and right-to-die associations. (2) Choices about disclosing their experiences. In general, families believed that assisted suicide is a private matter, to be pursued mainly outside the medical field and involved physicians only when necessary. Families appeared to deliberately limit interaction with physicians and to be more comfortable interacting with the right-to-die associations. Some participants presumed a clear choice between assisted suicide or palliative care. Disclosing to others the decision, and preparation of assisted suicide emerged to be an important emotional burden for families. Some family members preferred to restrict disclosure before and after assisted suicide, by sometimes not informing other family members until the final days.

s : In Switzerland, there is limited interaction between families and health care professionals concerning assisted suicide decisions, whereas families reported more open interactions with right-to-die associations. It is recommended that the needs of families should be reflected in health policies, taking into consideration the different contexts where assisted dying is permitted.

Guidelines recommend that pulmonary clinicians involve palliative care in chronic obstructive pulmonary disease (COPD); however, integration before advanced stage, that is, early palliative care, is rare.

To explore and compare pulmonary and palliative care clinician perspectives on barriers, facilitators, and potential referral criteria for early palliative care in COPD.

Qualitative descriptive formative evaluation study.

Pulmonary and palliative care clinicians at a tertiary academic medical center.

Transcribed interviews were thematically analyzed by specialty to identify within- and across-specialty perspectives on barriers, facilitators, and referral criteria.

Twelve clinicians (n = 6 pulmonary, n = 6 palliative care) participated. Clinicians from both specialties agreed that early palliative care could add value to disease-focused COPD care. Perspectives on many barriers and facilitators were shared between specialties along broad educational, clinical, and operational categories. Pulmonary and palliative care clinicians shared concerns about the misconception that palliative care was synonymous to end-of-life care. Pulmonologists were particularly concerned about the potential risks of opioids and benzodiazepines in COPD. Both specialties stressed the need for clearly defined roles, consensus referral criteria, and novel delivery models. Although no single referral criterion was discussed by all, frequent hospitalizations and emotional symptoms were raised by most across disciplines. Multimorbidity and poor prognosis were discussed only by palliative care clinicians, whereas medication adherence was discussed only by pulmonary clinicians.

Pulmonary and palliative care clinicians supported early palliative care in COPD. Continued needs include addressing pulmonologists' misconceptions of palliative care, establishing consensus referral criteria, and implementing novel early palliative care models.

Parenting a child with a serious life-threatening illness (SLTI) may impact parents' mental health. The protective association of social support with anxiety over time following an acute medical event has not been empirically tested in a sample of parents of children with oncologic and nononcologic serious illnesses.

To test the potential association of perceived social support with anxiety in parents of children with SLTIs over time.

Prospective cohort study.

Two hundred parents of 158 children in the Decision Making in Serious Pediatric Illness study, conducted at the Children's Hospital of Philadelphia.

Parental anxiety and perceived social support were assessed using the Hospital Anxiety and Depression Scale (HADS) and the Social Provisions Scale (SPS). We performed bivariate linear regressions to test cross-sectional and longitudinal associations between the SPS and anxiety scores at baseline, 12 months, and 24 months.

The average SPS total and subscale scores decreased significantly from baseline to 12 months, and increased from 12 to 24 months. The average HADS-Anxiety scores decreased significantly from baseline to 12 months, and remained stable at 24 months. Cross-sectionally, total SPS scores were negatively associated with anxiety scores at each time point. Longitudinally, SPS scores were associated with anxiety scores, although this association weakened in adjusted modeling.

Over a two-year period, higher levels of perceived social support were associated with lower levels of anxiety in parents of seriously ill children. Clinicians and researchers should work to optimize social support for families to improve parental mental health outcomes.

In health care, clinical effectiveness involves evaluating the degree to which clinical interventions achieve beneficial patient and caregiver outcomes.

To evaluate the clinical effectiveness of care in a specialist palliative care unit (SPCU) in Ireland, including an analysis of the temporal relationship among admission, Phase of Illness and patient and family distress.

A consecutive case series with prospectively collected admission data (n = 400). Using a casemix tool (Phase of Illness), pain, other symptoms, psychological and family distress, and performance status were documented on admission and then daily by medical staff.

Three hundred forty-two (85%) patients had complete data recorded on day 1. After admission, there were linear correlations between days since admission and progressive improvements in pain (Cramer's V = 0.131, p < 0.001), other symptoms (V = 0.206, p < 0.001), psychological distress (V = 0.101, p < 0.001), and family distress (V = 0.124, p < 0.001). Forty-three percent were in an unstable phase on admission. Nearly two thirds (60.7%) of these unstable patients converted to a stable phase within 48 hours of admission. Over the first 72 hours, 70.7% of unstable patients converted to a stable phase. There was also a significant correlation between phase stabilization and pain and symptom control (p = 0.007). Stable phase over the first 4 days and first 14 days was associated with significantly higher performance status.

This study demonstrates the significant clinical effectiveness of SPCU admission across the different aspects of patient and family care.

Patient/clinician communication is critical to quality cancer care at the end-of-life (EOL). Yet discussions about systemic therapy discontinuation or hospice as a care option are commonly deferred. Real-time communication about these complex topics has not been evaluated. Palliative care visits may provide useful insight into how communication about EOL care occurs over time.

To explore the nature of discussions about systemic therapy discontinuation and hospice among patients, families, and palliative care clinicians during care for incurable cancer.

Qualitative study of palliative care visits.

We audiorecorded visits of patients and families who participated in a palliative care trial from diagnosis of incurable lung or noncolorectal gastrointestinal cancer through the course of cancer care (n = 30).

We used thematic analysis to characterize communication patterns in the context of clinical events.

Content and tenor of discussions shifted in relation to patient health status. In the absence of acute medical deterioration, discussions addressed hospice broadly as an EOL care option. Candid exchanges between patients and families and their clinicians supported increasing depth and specificity of EOL care communication. As clinicians identified that patients were not tolerating treatment, the clinicians encouraged contemplation about quality-of-life implications of continuing treatment or the possibility that treatment might harm more than help, in anticipation of change in health status.

Longitudinal relationships with palliative care clinicians functioned through multiple pathways to support patients and families in making complex EOL care decisions. Results inform models and interventions of communication at the EOL.

In 2014, the province of Alberta launched a campaign to promote public awareness of advance care planning (ACP) and its associated two-part documentation—a Goals of care designation (GCD, a medical order written by a health care practitioner detailing wishes for care) and a personal directive (PD, a document naming a surrogate decision maker). Notably, unlike the GCD, the PD can be self-initiated independent of a health practitioner.

Two years after the campaign, we aimed to assess knowledge and recall of participation in ACP among cirrhosis patients.

Consecutive adult cirrhosis patients attending one of two specialty cirrhosis clinics in Edmonton, Alberta, were surveyed.

Ninety-seven patients were included. Mean model for end-stage liver disease was 12. Although 97% of patients indicated it was extremely important to know the reality of their illness, only 53% understood that cirrhosis would affect their future quality of life. Thirty-three percent of patients had completed a PD and 14% had completed a GCD. Seventy-eight percent of patients believed a GCD was important to them and 85% preferred to complete it in an outpatient clinic setting. Only a minority of patients who had taken the initiative to complete a PD in the community also had a GCD.

Despite efforts to raise awareness of and educate Albertans about ACP, <20% of cirrhosis patients have a completed GCD. Additional strategic prioritization is required in both patients and providers to ensure that health practitioner-facilitated ACP is carried out as standard-of-care in all patients with cirrhosis.

Patients with serious illness often have pain, uncontrolled symptoms, and poor quality of life. Evidence continues to evolve regarding the role of cannabis to treat chronic pain, nausea, and anorexia. Little is known about how patients with serious illness perceive its benefits and harms. Given that an increasing number of clinicians across the United States are treating patients with medical cannabis, it is important for providers to understand patient beliefs about this modality. We assessed patient perceptions of benefits and harms of cannabis who obtained a medical cannabis card within an ambulatory palliative care (APC) practice.

We recruited patients with a medical cannabis card, allowing for legal possession of cannabis oil, from an APC practice in Georgia. All participants reported using cannabis products. Patients completed an online survey that included questions about their cannabis use, concurrent opiate or controlled medication use, and perceptions of benefits and harms of cannabis.

All 101 patients invited to participate completed the survey. A majority had cancer (76%) and were married (61%), disabled or retired (75%), older than 50 years of age (64%), and men (56%). Most patients ingested (61%) or vaporized (49%) cannabis products. A majority of respondents perceived cannabis to be important for their pain (96%) management. They reported that side effects were minimally bothersome, and drowsiness was the most commonly reported bothersome harm (28%). A minority of patients reported cannabis withdrawal symptoms (19%) and concerns for dependency (14%). The majority of patients were using concurrent prescription opioids (65%). Furthermore, a majority of cancer patients reported cannabis as being important for cancer cure (59%).

Patients living with serious illnesses who use cannabis in the context of a multidisciplinary APC practice use cannabis for curative intent and for pain and symptom control. Patients reported improved pain, other symptoms, and a sense of well-being with few reported harms.

Studies show significant associations between the various dimensions of religiousness and end-of-life (EOL) decisions, such as individuals with high religiosity are more likely to choose aggressive care at EOL. However, these studies focused largely on smaller cancer populations. To our knowledge, there is no existing literature about the association between religiosity and EOL decisions within a national sample of older adults.

The objective of this study was to investigate the association between religiosity and advance directive (AD) completion, and among those with an AD, documented EOL care preferences, using a nationally representative sample.

This was an observational study. Descriptive statistics and logistic regression were conducted with 6051 decedents from the Health and Retirement Study using self-reported frequency of religious service attendance, importance of religion, and religious affiliation.

The dependent variables were AD completion and care preference. The independent variables were self-reported frequency of religious service attendance, importance of religion, and religious affiliation.

Protestants and Catholics had significantly lower odds of AD completion, compared with those with no religious preferences. Decedents who reported religion as very important had significantly lower odds of AD completion than decedents who said religion is not too important. Furthermore, decedents who attended religious services at least once a week, compared with those who do not attend, had significantly higher odds of completing an AD. Among those who completed an AD, neither religiosity nor religious affiliation was significantly associated with preference for prolonged care.

Our study demonstrates the influence religiosity has on the development of ADs, prompting seriously ill patients' religious needs to be recognized and supported. It further suggests that religious services may provide a good opportunity for promoting knowledge and completion of ADs.