Interdisciplinary Perspectives on the Value of Massage Therapy in a Pediatric Hospice.

Canuck Place Children's Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist and clinical instructor through West Coast College of Massage Therapy. This study aimed to explore clinicians' perspectives on the value of providing massage therapy to support children in hospice care, their families, and staff. The research participants (n = 6) comprised Canuck Place clinicians who have experience with the massage therapy practicum. In this descriptive phenomenological inquiry, semistructured interviews and thematic analysis were used. The findings demonstrated that Canuck Place clinicians valued the massage therapy practicum for its practical support in terms of creating access to massage therapy and self-care in the hospice. Massage therapy was also valued for supporting physical wellness (injury prevention/maintenance and symptom management) and psychosocial wellness (supporting dignity, interconnection, intraconnection, and rest/relaxation and providing a source of comfort/nurturing). This study is the first to explore clinicians' perceptions of massage therapy within a pediatric hospice and contributes to understanding massage therapy's potential role in the support of children, families, and staff within a hospice setting.

Mortality trends for pediatric life-threatening conditions.

Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population (province) for individuals aged 0 to 18 years from 2002 to 2011. The provincial death rate was 2.30 per 10 000. The sample did not significantly vary with respect to sex and geographic distribution when compared to the population. Infants contributed to a significantly larger proportion of pediatric deaths in the population. Children referred to the hospice were more likely to be diagnosed with cancer and diseases of the nervous system. Only 15% of all pediatric deaths due to disease in the province were cared for by the hospice, calling for the strengthening of interdisciplinary palliative care programs.

Characteristics of a pediatric hospice palliative care program over 15 years.

OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS: A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS: The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%). CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric life-threatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served.

Resource utilization among individuals dying of pediatric life-threatening diseases.

BACKGROUND AND OBJECTIVES: Very little information exists on the number of resources utilized by individuals living with and dying of pediatric life-threatening diseases (LTDs). This study quantifies end of life (EOL) resource utilization among the pediatric population in British Columbia, Canada. METHODS: Data from Vital Statistics British Columbia were obtained for the pediatric population that died between 2002/03 and 2006/07. Our sample included three age groups: less than 1 year (excluding sudden infant death syndrome cases), 1 to 19 years, and 20 to 24 years. Using data from the Medical Services Plan and Discharge Abstract Database, we calculated annual rates of resources utilized (number of discharges, number of days in hospital, and number of medical services used) for every pediatric death that was due to an LTD in our selected 5-year time frame. Place of death was also explored. RESULTS: During the fiscal year of death and the fiscal year prior to death, children/adolescents and young adults dying of a pediatric LTD respectively experienced 5.3 and 3.7 hospital discharges, spent 48 and 39 days in the hospital, and required approximately 222 and 230 medical services. Infants were discharged once on average, and required 21 medical services. CONCLUSIONS: Resource utilization was very high for all three age groups, demonstrating the intense need for care by children dying of disease. These findings call for the strengthening of palliative care services in the province.

Paediatric palliative care: a survey of paediatricians and family practitioners.

BACKGROUND: Paediatric palliative care focuses on the enhancement of the quality of life for a child and family through a combination of active and compassionate therapies intended to comfort and support the child and family who are living with a life-threatening illness. The purpose of this study was to assess the experience with and confidence in providing paediatric palliative care of practicing family/general practitioners (GPs) and paediatricians. In addition, the learning needs, modes of learning and their methods of coping/self-care were questioned. METHODS: Two hundred paediatricians and GPs in the province of British Columbia were randomly selected to participate in a mailed survey. The survey consisted of three categories: demographic information, experience and knowledge of paediatric palliative care, educational needs and preferences for learning and provision of their own self-care. RESULTS: The response rate of completed surveys was 56.5%. Only 40.1% of respondents felt their knowledge and experience were adequate. Overall, 73.5% of the respondents reported that they would like to learn more about paediatric palliative care. Over 53% of those surveyed preferred that learning be offered remotely through either internet or correspondence. Seventy-four per cent of respondents expressed they had adequate or very adequate self-care strategies to meet their own needs of well-being. CONCLUSIONS: The results of the survey will guide the paediatric palliative care community to design programmes that will better educate practicing physicians and future physicians about paediatric palliative and end of life care, healthcare services and family communication and support.

The Madison Clinic: Evaluation of a collaborative outpatient paediatric palliative care clinic.

BACKGROUND: A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with life-limiting conditions. This clinic was created with input from clinicians, program leaders and families in developing the goals and format. METHOD: The clinic was evaluated with indicators that included program data from palliative care consultations. This information was collected and recorded on a prospective basis. RESULTS: In the first 29 months of operation, 43 clinics were held, 39 individual patients were seen and there were 59 visits. The majority of visits were for pain and symptom management (75%), while 20% were for assessment for the hospice program. The hospice-palliative care team also provided telephone support, videoconference support and inpatient consultations. Patients reported overall satisfaction with their experiences at the clinic. DISCUSSION: A major benefit of this outpatient palliative care clinic is its ability to offer continuity of care for patients and their families. It also serves as a preliminary introduction to palliative care, particularly significant for families who are not yet ready to learn about or engage in the full hospice program.