Journal of Palliative Medicine

Little is known about how physician and parent perspectives compare regarding the prognosis and end-of-life (EOL) experience of children with advanced heart disease (AHD).

The study's objective was to describe and compare parent and physician perceptions regarding prognosis and EOL experience in children with AHD.

This was a cross-sectional survey study of cardiologists and bereaved parents. Study subjects were parents and cardiologists of children with primary cardiac diagnoses who died in a tertiary care pediatric hospital between January 2007 and December 2009. Inclusion required both physician and parent to have completed surveys respective to the same patient. A total of 31 parent/physician pairs formed the analytic sample. Perceptions were measured of cardiologists and bereaved parents regarding the EOL experience of children with AHD.

Nearly half of parents and physicians felt that patients suffered ‘a great deal,’ ‘a lot,’ or ‘somewhat’ at EOL, but there was no agreement between them. At diagnosis, parents more often expected complete repair and normal lifespan while the majority of physicians expected shortened lifespan without normal quality of life. Parents who expected complete repair with normal life were more likely to report ‘a lot’ of suffering at EOL (p=0.002). In 43% of cases, physicians reported that the parents were prepared for the way in which their child died, while the parents reported feeling unprepared.

Both parents and physicians perceive suffering at EOL in patients who die of AHD. Moreover, parent expectations at diagnosis may influence perceptions of suffering at EOL. Physicians overestimate the degree of parent preparedness for their child's death.

Three important elements of the World Health Organization (WHO) definition of palliative care are: 1) it includes patients who may have cure or life prolongation as treatment aims besides palliative care; 2) it is not exclusively for cancer patients; and 3) it includes attention to the medical, psychological, social, and spiritual needs of the patients and their families. Case managers (nurses with expertise in palliative care) may assist generalist primary care providers in delivery of good palliative care.

This study investigates the referral of patients to case managers in primary care with regard to the three elements mentioned: diagnosis, treatment aims, and needs as reflected in reasons given for referral.

In this cross-sectional survey in primary care among case managers and referrers to case management, case managers completed questionnaires for 687 patients; referrers completed 448 (65%).

Most patients referred have a combination of treatment aims (69%). Life expectancy and functional status of patients are lower for those with a treatment aim of palliation. Almost all (96%) of those referred are cancer patients. A need for psychosocial support is frequently given as a reason for referral (66%) regardless of treatment aim.

Referrals to case managers reflect two of three elements of the WHO definition. Mainly, patients are referred for support complementary to medical care, and relatively early in their disease trajectory. However, most of those referred are cancer patients. Thus, to fully reflect the definition, broadening the scope to reach other patient groups is important.

Palliative care clinicians (PCCs) are susceptible to burnout, as they regularly witness immense patient and family suffering; however, little is known about their specific challenges and training needs to enhance their long-term sustainability.

The purpose of this qualitative study was to explore common stressors, coping strategies, and training needs among PCCs in efforts to inform the development of a targeted Resiliency Program.

Utilizing a semistructured interview guide, we conducted a series of in-depth interviews with 15 PCCs at the Massachusetts General Hospital.

Content analysis highlighted three main areas of stressors: (1) systematic challenges related to managing large, emotionally demanding caseloads within time constraints; (2) patient factors, such as addressing patients' mutable needs, managing family dynamics, and meeting patient and family demands and expectations; and (3) personal challenges of delineating emotional and professional boundaries. Engaging in healthy behaviors and hobbies and seeking emotional support from colleagues and friends were among the most common methods of coping with stressors. In terms of programmatic topics, PCCs desired training in mind-body skills (e.g., breathing, yoga, meditation), health education about the effects of stress, and cognitive strategies to help reduce ruminative thoughts and negative self-talk. A majority of clinicians stressed the need for brief strategies that could be readily integrated in the workplace.

These results suggest that an intervention aimed to enhance PCC sustainability should focus on utilizing a skill-building approach to stress reduction that imparts strategies that can be readily utilized during work hours.

Recent focus on palliative and end-of-life care has led medical schools worldwide to enhance their palliative care curricula.

The objective of the study was to describe recent curricular innovations in palliative care for medical students, evaluate the quality of studies in the field, and inform future research and curricular design.

The authors searched Medline, Scopus, and Educational Resource Information Center (ERIC) for English-language articles published between 2007 and 2013 describing a palliative care curriculum for medical students. Characteristics of the curricula were extracted, and methodological quality was assessed using the Medical Education Research Study Quality Instrument (MERSQI).

The sample described 48 curricula in 12 countries. Faculty were usually interdisciplinary. Palliative care topics included patient assessment, communication, pain and symptom management, psychosocial and spiritual needs, bioethics and the law, role in the health care system, interdisciplinary teamwork, and self-care. Thirty-nine articles included quantitative evaluation, with a mean MERSQI score of 9.9 (on a scale of 5 to 18). The domain most likely to receive a high score was data analysis (mean 2.51 out of 3), while the domains most likely to receive low scores were validity of instrument (mean 1.05) and outcomes (mean 1.31).

Recent innovations in palliative care education for medical students represent varied settings, learner levels, instructors, educational modalities, and palliative care topics. Future curricula should continue to incorporate interdisciplinary faculty. Studies could be improved by integrating longitudinal curricula and longer-term outcomes; collaborating across institutions; using validated measures; and assessing higher-level outcomes including skills, behaviors, and impact on patient care.

Pediatric patients with complex chronic conditions (CCC) can benefit from pediatric palliative and hospice care (PP/HC) services. PP/HC can be delivered in a variety of health care settings and for a multitude of conditions, but data on hospitalization patterns and on secondary illnesses in pediatric CCC patients remains scant.

The study objective was to describe mortality trends for Rhode Island resident children aged 0–17 years, along with the demographics, subtypes, sites of death, and comorbidities of those with CCC.

This was a retrospective cohort study using demographic, hospitalization, and clinical data from all Rhode Island Department of Health death certificates from 2000 to 2012.

Among the 1422 Rhode Island children aged 0–17 years old who died from 2000 to 2012, CCCs accounted for 27% (279/1049) of medically related deaths and 62% (145/233) of such deaths after infancy. CCC deaths were more likely at home (OR 5.202, 95% CI 2.984–9.203, p<0.001) and to have had a secondary cause of death documented (OR 3.032, 95% CI 2.259–4.067, p<0.001) than were other medically related deaths. Infants with CCCs were more likely to die in an inpatient setting (OR 5.141, 95% CI 2.718–10.026, p<0.001), whereas 1–17 year-olds with CCCs were more likely to die at home (OR 5.346, 95% CI 2.200–14.811, p<0.001) or in an emergency department (OR 3.281, 95% CI 1.363–8.721, p<0.040).

CCCs constitute a significant proportion of medically related pediatric deaths in Rhode Island and are associated with both secondary comorbidities and death at home. Specialized, multidisciplinary services are warranted and PP/HC is crucial for patient and family support.

More U.S. hospitals are adopting palliative care programs, prompting inquiry about the relationship of palliative care to patient and family satisfaction. This study compares the impact of palliative care units, palliative care consultation, and usual care on bereaved families' perceptions of care quality.

Using the Bereaved Family Survey we conducted interviews with family members of patients who died at Mount Sinai Medical Center between March 2012 and March 2013.

Of 108 completed surveys, 31 were in the palliative care unit group, 28 in the consultation service group, and 49 in the usual care group. Family members of patients who died on the palliative care unit were more likely to report that their loved one's end-of-life medical care had been “excellent” as compared to family members of patients who received palliative care consultation or usual care (adjusted OR, 2.06; 95% CI, 1.17–3.61). Family members of palliative care unit patients also reported greater satisfaction with emotional support before the patient's death (adjusted OR, 1.71; 95% CI, 1.01–2.90). We found no significant differences between the consultation service and usual care.

Family members of patients who died while receiving care in a dedicated palliative care unit report higher overall satisfaction and emotional support before death as compared to the consultation service or usual care.

Nonsteroidal anti-inflammatory analgesics (NSAIDs) are useful in cancer pain but the specific use of subcutaneous parecoxib has not been previously reported.

This pilot study aimed to establish the efficacy and side effect profile of short-term sequential single daily dose subcutaneous parecoxib sodium in patients with severe cancer bone pain.

Nineteen hospitalized patients with advanced cancer and uncontrolled malignant bone pain (9 males, 10 females) received 24 courses of one, two, or three days sequential therapy with ‘off-label’ daily subcutaneous parecoxib. All patients were receiving opioid therapy; the median baseline daily oral equivalent dose (OED) of morphine was 180 mg. Pain was assessed at baseline, 24 hours, 48 hours, and 72 hours. Pain scores as assessed on an 11-point numeric pain rating scale (NPRS), any side effects including subcutaneous site reactions, as well as patient satisfaction rating with analgesia were recorded. A clinically significant decrease in pain scores was defined as a reduction of two or more points on the NPRS.

Median pain score of all patient treatments decreased from 7 to 4.5 at 24 hours (p<0.001) and 4.0 at 48 hours. A response was seen in 17 (71%) of the 24 treatments at 24 hours. There was no difference between median negative change in pain scores in 19 (79%) treatments where pain was either strongly movement related, or in 22 (94%) treatments where local bone tenderness was more pronounced. No major side effects were observed during treatment. One patient died from pulmonary embolism after cessation of concurrent prophylactic low molecular weight heparin prior to staging liver biopsy. Subcutaneous site reactions occurred in 2 (8%) treatments and were mild and self limiting.

Short-term daily subcutaneous parecoxib injection was effective for malignant bone pain when added to existing analgesic therapy and was well tolerated. Further research is warranted into the short-term use of parecoxib in hospitalized patients with intractable malignant bone pain.

Intravenous lidocaine infusion has been clearly demonstrated as effective for pain in randomized controlled trials, but the belief that cardiac monitoring is required for safe administration is a barrier to access in the palliative care setting. There are also multiple infusion protocols reported in the literature. We have been administering lidocaine infusions for severe cancer pain at the BC Cancer Agency (BCCA) since 2003, without electrocardiographic (ECG) monitoring. Our simple protocol is for 5 mg/kg to be infused over 1 hour, with the option for subsequent doses to be increased if necessary, up to a maximum of 10 mg/kg. Our aim with this study is to share 11 years of our experience with this protocol.

This is a retrospective case series. Records of patients who received at least one lidocaine infusion for pain between 2003 and 2013 at the BCCA were reviewed. The primary end points were the documentation of clinical benefit and adverse effects.

A total of 122 lidocaine infusions were administered in 51 individual patients. Twenty-five (49%) had a major response, 12 (23.5%) had a minor response, and 14 (27.5%) were considered nonresponders. Twenty-two (43.1%) patients were noted to have some adverse effect during at least one of the infusions, but only 1 (1.9%) patient had the infusion permanently discontinued. The most common side effects were drowsiness (30.7%), perioral numbness (13.4%), nausea (5.7%), and minor fluctuations of blood pressure (3.8%).

This case series demonstrates that our protocol of infusional lidocaine can be beneficial to patients with cancer with severe opioid-refractory pain, and can safely be administered with close observation and vital sign monitoring, without ECG monitoring. Lidocaine infusion is a useful option to consider when other pain treatments have not been successful. Although only approximately half of patients will respond well, there is little harm to be expected from a trial of lidocaine infusion and responders can be repeatedly treated. This treatment could be delivered in palliative care units, hospices, or even patients' homes, providing suitable nursing supervision can be provided.

Palliative care and preparation for liver transplantation are often perceived as conflicting for patients with end-stage liver disease (ESLD). We sought to improve both simultaneously through a case finding and care coordination quality improvement intervention.

We identified patients with cirrhosis using validated ICD-9 codes and screened them for ESLD by assessing medical records at a VA hospital for either a model for end-stage liver disease (MELD) ≥14 or a diagnosis of hepatocellular carcinoma (HCC) between October 2012 and January 2013. A care coordinator followed veterans from the index hospitalization through April 2013 and encouraged treating physicians to submit liver transplant evaluation consults for all veterans with a MELD ≥14 and palliative care consults for all veterans with a MELD ≥20 or inoperable HCC.

We compared rates of consultation for 49 hospitalized veterans and compared their outcomes to 61 pre-intervention veterans. Veterans were more likely to be considered for liver transplantation (77.6% versus 31.1%, p<0.001) and receive palliative care consultation during the intervention period, although the latter finding did not reach statistical significance (62.5% versus 47.1%, p=0.38).

Active case finding improved consideration for liver transplantation without decreasing palliative care consultation.

Prognostication plays a key role in palliative care (PC). It is critical for advance care planning, determining hospice eligibility, and communication. In contrast to subjective clinical prognostication, evidence-based prognostication (EBP) uses existing validated data to quantify prognosis; however, the extent to which PC providers use EBP is limited.

The objective was to analyze documentation of EBP by PC providers in the absence of an inpatient consultation note template at a single academic medical center.

We retrospectively evaluated prognostic documentation of inpatient PC consultations on oncology patients at a single academic hospital. Ratings of Eastern Cooperative Oncology Group (ECOG) Scale, Karnofsky Performance Scale (KPS), Palliative Performance Scale, and/or activities of daily living (ADLs) were considered documentation of functional status. PC-specific documentation of EBP included the Palliative Prognostic Index and/or Palliative Prognostic Score.

There were 412 inpatient PC consultations for oncology patients (2012–2013). Reasons for consultation included goals of care (n=108), symptom management (n=181), or both (n=123). In the absence of a note template, functional status was documented in 6% (n=24) of consultation notes, while no consultation notes contained EBP documentation of the Palliative Prognostic Index and Palliative Prognostic Score.

This retrospective analysis conducted at a single academic medical center suggests poor documentation by PC providers of EBP in the absence of a consultation note template. Research and educational opportunities exist to evaluate barriers to EBP utilization and documentation by PC providers.