What do Future Hospice Patients Expect of Hospice Care: Expectations of Patients in the Palliative Phase Who Might be in Need of Hospice Care in the Future: A Qualitative Exploration.

INTRODUCTION: Hospice care (HC) in the Netherlands is available for patients with life expectancies <3 months. Little is known about expectations of patients who might be in need of HC. This study aims to gain insight into expectations of patients regarding HC in order to ameliorate HC to become driven by patient needs. DESIGN: A generic qualitative study, using semistructured interviews and thematic analysis, is performed in the Netherlands from January to June 2018. A purposeful sample of 13 participants was drawn. RESULTS: Participants expected hospice admission only when the burden became unbearable and a home death cannot be reached. Participants expected a homely atmosphere, where one can continue the life lived at home as much as possible. Participants supposed empathic professional caregivers, capable of providing appropriate care. The general practitioner is expected to stay involved in the care process due to the mutual trust. Medical and daily care are required to be provided by competent professionals, where volunteers are expected to provide supportive care. All caregivers are supposed to provide a listening ear and "being there" for participants. Social care and spiritual care are generally projected to be private matters, unless it is requested. CONCLUSIONS: Patients in the palliative phase who might be in need of HC have specific expectations. Perceptions of HC in the public domain should be nuanced in response to these expectations, and information provision on HC should be improved. Then, expectations could be met to make HC more driven by patient needs and future oriented.

Validation of the Mindful Self-Care Scale (MSCS) and development of the Brief-MSCS among hospice and healthcare professionals: a confirmatory factor analysis approach to validation.

OBJECTIVE: In the emotionally intense field of healthcare, the ability to peacefully inhabit one's body, maintain good boundaries, and be fully present during care is essential. This study aimed to validate the recently developed Mindful Self-Care Scale (MSCS) among hospice and healthcare professionals and develop a brief version of the 33-item MSCS. METHOD: A sample of hospice and healthcare professionals from all 50 states (n = 858) was used. A confirmatory factor analysis was run using a rigorous methodology for validation and item reduction to develop a brief version of the 33-item MSCS. The brief MSCS (B-MSCS) was developed by identifying items for exclusion through examination of conceptual overlap, descriptive statistics by detecting sources of improvement model fit using confirmatory factor analysis. Model modifications were done sequentially and with regard to theoretical considerations. RESULT: The existing model, 33-item MSCS with six subscales, had good fit to the data with all indicators in acceptable ranges (chi-square/df = 3.08, df (480), p < 0.01, root mean square error of approximation = 0.059, comparative fit index = 0.915, Tucker and Lewis's index of fit = 0.907). Nine items were excluded on the basis of very low loadings and conceptual and empirical overlap with other items. SIGNIFICANCE OF RESULTS: The final 24-item, B-MSCS model was consistent with the original conceptual model and had a closer fit to the data (chi-square/df = 1.85, df (215), p < 0.01, root mean square error of approximation = 0.041, comparative fit index = 0.961, Tucker and Lewis's index of fit = 0.955). In addition, the reliability, construct, and concurrent validity of the MSCS and B-MSCS were in the acceptable and good ranges, respectively. Mean and standard deviation of the MSCS and B-MSCS scores were similar; B-MSCS mean scores well approximated the MSCS scores. Informal mindful self-care, in the process of everyday life, was practiced more regularly and associated with increased wellness and reduced burnout risk than formal mind-body practices.

Palliative Care Experience in the Last 3 Months of Life: A Quantitative Comparison of Care Provided in Residential Hospices, Hospitals, and the Home From the Perspectives of Bereaved Caregivers.

OBJECTIVE: This study captured the end-of-life care experiences across various settings from bereaved caregivers of individuals who died in residential hospice. METHODS: A retrospective, observational design using the CaregiverVoice survey with bereaved caregivers of patients in 22 hospices in Ontario, Canada. The survey assessed various dimensions of the patient's care experiences across multiple care settings in the last 3 months of life. RESULTS: A total of 1153 caregivers responded to the survey (44% response rate). In addition to hospice care, caregivers reported that 74% of patients received home care, 61% had a hospitalization, 42% received care at a cancer center, and 10% lived in a nursing home. Most caregivers (84%-89%) rated the addressing of each support domain (relief of physical pain, relief of other symptoms, spiritual support, and emotional support) by hospice as either "excellent" or "very good." These proportions were less favorable for home care (40%-47%), cancer center (46%-54%), and hospital (37%-48%). Significantly, better experiences were reported for the last week of life where hospice was considered the main setting of care, opposed to other settings ( P < .0001 across domains). Overall, across settings pain management tended to be the highest-rated domain and spiritual support the lowest. CONCLUSION: This is one of few quantitative examinations of the care experience of patients who accessed multiple care settings in the last months of life and died in a specialized setting such as residential hospice. These findings emphasize the importance of replicating the hospice approach in institutional and home settings, including greater attention to emotional and spiritual dimensions of care.

Enhancing integrated palliative care: what models are appropriate? A cross-case analysis.

BACKGROUND: Effective integration between hospices, palliative care services and other local health care services to support patients with palliative care needs is an important international priority. A previous model suggests that integration involves a cumulative stepped process of engagement with other organisations labelled as 'support, supplant or supplement', but the extent to which this model currently applies in the United Kingdom is unknown. We aimed to investigate accounts of hospice integration with local health care providers, using the framework provided by the model, to determine how service users and healthcare professionals perceived palliative care services and the extent of integration experienced. METHODS: Longitudinal organisational case study methods were employed using qualitative serial interviews (interval 3 months) with patients and family carers focusing on how services responded to their needs; and group interviews with health professionals. Data were audio-recorded, transcribed verbatim, and analysed by qualitative content analysis and combined across data sources. RESULTS: The study focused on four hospices in northern England, including 34 patients (diagnosis: 17 cancer, 10 COPD, 7 heart failure), 65% female, mean age 66 (range 44-89), 13 family carers of these patients (48% partners), and 23 health care professionals. While some care fell short of expectations, all patients reported high levels of satisfaction and valued continuity of care and efficient information sharing. All hospices supported and supplemented local providers, with three hospices also supplanting local provision by providing in-patient facilities. CONCLUSION: UK hospices predominantly operate in ways that support and supplement other providers. In addition, some also supplant local services, taking over direct responsibility and funding in-patient care. They all contributed to integration with local services, with greater blurring of boundaries than defined by the original model. Integrated care offers the necessary flexibility to respond to changes in patient needs, however, constraints from funding drivers and a lack of clear responsibilities in the UK can result in shortfalls in optimal service delivery. Integrating hospice care with local healthcare services can help to address demographic changes, predominantly more frail older people, and disease factors, including the needs of those with non-malignant conditions. This model, tested in the UK, could serve as an example for other countries.

Dementia Caregivers and Live Discharge from Hospice: What Happens When Hospice Leaves?

Hospice offers holistic support for individuals living with terminal illness and their caregivers. Some individuals receiving hospice services experience a slower decline in health as than expected, resulting in a 'live discharge' from hospice. A live discharge affects both patient and caregiver(s).The current study (N=24) explored the experiences of caregivers of adults with dementia who experienced a live discharge from hospice. Findings emphasize the comprehensive services covered under the Medicare Hospice benefit and those lost after a live discharge. Implications for social workers supporting caregivers are discussed, including the need to view the patient-caregiver unit during a live discharge.

Integrating palliative care across settings: A retrospective cohort study of a hospice home care programme for cancer patients.

BACKGROUND: Terminally ill patients at the end-of-life do transit between care settings due to their complex care needs. Problems of care fragmentation could result in poor quality of care. AIM: We aimed to evaluate the impact of an integrated hospice home care programme on acute care service usage and on the share of home deaths. SETTINGS/PARTICIPANTS: The retrospective study cohort comprised patients who were diagnosed with cancer, had an expected prognosis of 1 year or less, and were referred to a home hospice. The intervention group comprised deceased patients enrolled in the integrated hospice home care programme between September 2012 and June 2014. The historical comparison group comprised deceased patients who were referred to other home hospices between January 2007 and January 2011. RESULTS: There were 321 cases and 593 comparator subjects. Relative to the comparator group, the share of hospital deaths was significantly lower for programme participants (12.1% versus 42.7%). After adjusting for differences at baseline, the intervention group had statistically significantly lower emergency department visits at 30 days (incidence rate ratio: 0.38; 95% confidence interval: 0.31-0.47), 60 days (incidence rate ratio: 0.61; 95% confidence interval: 0.54-0.69) and 90 days (incidence rate ratio: 0.69; 95% confidence interval: 0.62-0.77) prior to death. Similar results held for the number of hospitalisations at 30 days (incidence rate ratio: 0.48; 95% confidence interval: 0.40-0.58), 60 days (incidence rate ratio: 0.71; 95% confidence interval: 0.62-0.82) and 90 days (incidence rate ratio: 0.77; 95% confidence interval: 0.68-0.88) prior to death. CONCLUSION: Our results demonstrated that by integrating services between acute care and home hospice care, a reduction in acute care service usage could occur.

Music Therapy Clinical Practice in Hospice: Differences Between Home and Nursing Home Delivery.

BACKGROUND: Hospice music therapy is delivered in both homes and nursing homes (NH). No studies to date have explored differences in music therapy delivery between home and NH hospice patients. OBJECTIVE: To compare music therapy referral reasons and delivery for hospice patients living in NH versus home. METHODS: A retrospective, electronic medical record review was conducted from a large U.S. hospice of patients receiving music therapy between January 1, 2006, and December 31, 2010. RESULTS: Among the 4,804 patients, 2,930 lived in an NH and 1,847 patients lived at home. Compared to home, NH hospice patients were more likely to be female, older, unmarried, and Caucasian. For home hospice patients, the top referral reasons were patient/family emotional and spiritual support, quality of life, and isolation. The most frequent referral reasons for NH hospice patients were isolation, quality of life, and patient/family emotional and spiritual support. Differences in music therapy delivery depended mainly on patients' primary diagnosis and location of care. CONCLUSIONS: Results suggest differences in referral reasons and delivery based on an interaction between location of care and patient characteristics. Delivery differences are likely a result of individualized assessment and care plans developed by the music therapist and other interdisciplinary team members to address the unique needs of the patient. Thus, it is important to have professionally trained music therapists assess and provide tailored music-based interventions for patients with different referral reasons and personal characteristics. This study also supports staffing decisions based on patient need rather than average daily census.

Volunteer activity in specialist paediatric palliative care: a national survey.

OBJECTIVE: To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. METHOD: Cross-sectional survey using a web-based questionnaire. SETTING: UK specialist paediatric palliative care services. PARTICIPANTS: Volunteer managers/coordinators from all UK hospice providers (n=37) and one National Health Service palliative care service involving volunteers (covering 53 services in total). MAIN OUTCOMES: Service characteristics, number of volunteers, extent of volunteer involvement in care services, use of volunteers' professional skills and volunteer activities by setting. RESULTS: A total of 21 providers covering 31 hospices/palliative care services responded (30 evaluable responses). Referral age limit was 16-19 years in 23 services and 23-35 years in seven services; three services were Hospice at Home or home care only. Per service, there was a median of 25 volunteers with direct patient/family contact. Services providing only home care involved fewer volunteers than hospices with beds. Volunteers entirely ran some services, notably complementary therapy and pastoral/faith-based care. Complementary therapists, school teachers and spiritual care workers most commonly volunteered their professional skills. Volunteers undertook a wide range of activities including emotional support and recreational activities with children and siblings. CONCLUSIONS: This is the most detailed national survey of volunteer activity in palliative care services for children and young people to date. It highlights the range and depth of volunteers' contribution to specialist paediatric palliative care services and will help to provide a basis for future research, which could inform expansion of volunteers' roles.

Volunteers in specialist palliative care: a survey of adult services in the United Kingdom.

BACKGROUND: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. OBJECTIVE: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. DESIGN: An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. RESULTS: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. CONCLUSIONS: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care.

Teaching communication skills to hospice teams: comparing the effectiveness of a communication skills laboratory with in-person, second life, and phone role-playing.

INTRODUCTION: Communication skills are critical in hospice care but challenging to teach. Therefore, a hospice agency developed a communication skills laboratory for nurses and social workers. METHODS: Learners role-played 3 common hospice scenarios. The role-play modalities were in-person, Second Life, and telephone. Learners were scored on 4 communication aspects. RESULTS: Learners in all modalities rated the laboratory as very effective. However, learners in the Second Life and phone modality showed greater improvements from scene 1 to 3 than those in the in-person modality. There were no significant differences in improvement between the Second Life and phone modalities. CONCLUSION: Results support the effectiveness of this communication skills laboratory while using different teaching modalities and show phone and Second Life role-plays were more effective than an in-person role-play.

Factors associated with hospices' provision of complementary and alternative medicine.

There is limited research about the provision of complementary and alternative (CAM) in US hospices. The purpose of this study was to assess the factors that influence hospices' likelihood of providing CAM therapies. Mail surveys were sent to 369 hospices in Texas; 61 were returned undelivered, yielding a total usable response rate of 35.7% (n = 110) after an initial and one follow-up mail out. Binary logistic regression was used to assess whether the likelihood of offering CAM is related to hospice's age, geographic location, agency type, profit orientation, Medicare certification, and number of patients served annually. Results showed that profit orientation and the number of patients served by hospices were significantly related to the probability that hospices will offer CAM. Specifically, the odds of offering CAM in not-for-profit hospices were approximately 4 times higher than that in for-profit hospices (odds ratio [OR] = 3.77, P = .022, 95% confidence interval [CI] = 1.2, 11.8). In addition, for every 100 patients served by the hospices, the odds of offering CAM increases by 13% (OR = 1.13, P = .015, 95% CI = 1.02, 1.25). In conclusion, CAM offering by hospices is related to hospices' profit orientation status and number of patients served but is not related to other measured characteristics of hospices.

Nonsmoking policy in Danish hospices.

The Danish Smoke-free Environments Act 2007 aimed to prevent the harmful health effects of secondhand smoking. It requires employers to take practicable steps to ensure smoke-free environments for all, i.e. employees as well as members of the public (visitors, clients, customers, etc). Palliative care aims for a holistic approach that takes into account all aspects of patients' psychological, physical, and social needs. This may be challenged by a smoke-free policy in an end-of-life care setting. This paper looks at the concept of smoke-free standards in Danish end-of-life care settings.

Estado actual de los cuidados paliativos pediátricos en España / No disponible

La muerte prematura en la infancia y adolescencia es una realidad y vivimos un aumento del número de pacientes pediátricos que conviven con una enfermedad incurable o en condiciones de alta vulnerabilidad y fragilidad para las que nuestra moderna medicina no tiene una adecuada respuesta. Los Cuidados Paliativos Pediátricos constituyen la asistencia activa y total del cuerpo, la mente y el espíritu del niño e incluyen la atención a la familia. Pretenden mejorar la atención y la calidad de vida de los pacientes pediátricos en situación terminal o con una enfermedad de pronóstico letal y la de sus familias, de forma integral, garantizando el respeto a su dignidad y el derecho a su autonomía, mediante una atención continuada e individualizada. En nuestro país existen actualmente tresUnidades de Cuidados Paliativos Pediátricos establecidas como tal, de forma que la cobertura asistencial a estos pacientes sigue siendo muy limitada. El desarrollo de redes adecuadas de cuidados paliativos pediátricos es un reto para las familias, profesionales sanitarios y la sociedad en genera (AU)

Premature death in children and adolescents is a fact, and there are increasing numbers of pediatric patients living with incurable diseases or under conditions of extreme vulnerability and fragility for which our modern medicine is not an adequate response. Pediatric palliative care is a proactive, total measure involving the body, mind and spirit of the child, and includes family care. The aim is to improve care and quality of life in pediatric patients with terminal illness or a fatal prognosis and their families in a holistic way, ensuring respect for their dignity and their right to independence through continued, individualized care. In our country there are now three Pediatric Palliative Care Units, so the healthcare coverage of these patients remains very limited. The development of appropriate pediatric palliative care networks is a challenge for families, health professionals, and society as a whole (AU)

Bereaved parents' experiences of the use of 'cold bedrooms' following the death of their child.

INTRODUCTION: Children's hospices have the facilities to enable a child to remain at the hospice following their death until the time of the funeral if desired by the family. The use of cold bedrooms (or beds) to reduce the rate of the body's physical deterioration enables the family to have unrestricted access and close proximity to the child throughout the 24-hour period. AIM: To explore how bereaved families experience the child remaining in a cold bedroom following the child's death in the period January 2002-March 2005. OBJECTIVE: To survey all the families whose child had been cared for in a cold bedroom in one children's hospice in South-East England (n=34). METHOD: A retrospective cross-sectional survey using a postal questionnaire was conducted. Questionnaires were sent to the 31 bereaved families who were considered eligible for participation. RESPONSE: Sixteen completed questionnaires were returned (51.6%); four families declined participation (12.9%); eleven families did not reply (35.5%). RESULTS: The experiences of sixteen families were obtained. The families expressed that they found the experience physically, practically and emotionally supportive, as they were able to continue to act as the child's parents, to choose and control how their child's care occurred, to say their farewells at their own pace and to plan the funeral of their choice. These results must be interpreted with the clear recognition that the experiences of 48.4% of the sample are unknown. Reasons for non-participation were explored. CONCLUSION: The study has methodological limitations but presents an investigation into the experiences of parents whose child has been cared for in a cold bedroom. These families all described the experience positively.

Use of complementary and alternative medicine (CAM) by Washington State hospices.

PURPOSE: To assess the use of complementary and alternative medicine in hospice care in the state of Washington. METHODS: Hospices offering inpatient and outpatient care in Washington State were surveyed by phone interview. RESULTS: Response rate was 100%. Results indicated that 86% of Washington State hospices offered complementary and alternative services to their patients, most frequently massage (87%), music therapy (74%), energy healing (65%), aromatherapy (45%), guided imagery (45%), compassionate touch (42%), acupuncture (32%), pet therapy (32%), meditation (29%), art therapy (22%), reflexology (19%), and hypnotherapy (16%). Most hospices relied on volunteers with or without small donations to offer such services. CONCLUSIONS: Complementary and alternative therapies are widely used by Washington State hospices but not covered under hospice benefits. Extensive use of these therapies seems to warrant the inclusion of complementary and alternative providers as part of hospice staff, and reimbursement schedules need to be integrated into hospice care.

Developing a pain and palliative care programme at a US children's hospital.

Although a number of successful adult combined pain and palliative care programmes exist worldwide, integrated paediatric pain and palliative care services are rare. This article reviews epidemiology, definition, symptom prevalence and myths in paediatric palliative care. It then describes the development of the Pediatric Pain and Palliative Care Programme at the Children's Hospitals and Clinics of Minnesota, USA. This paediatric service aims to control acute, chronic and recurrent pain in all in- and outpatients at the hospitals, with follow-up at home. The team also provides holistic, interdisciplinary care for children and teens with life-limiting or terminal diseases, and their families. It is the only paediatric hospice provider in the state of Minnesota. One of the advantages of an integrated Pain and Palliative Care Programme such as the one described in this article, may be the provision of care in a continuum from acute, chronic or recurrent pain to palliative care and hospice care. This example shows, that integrated paediatric pain medicine and palliative care programmes can be successfully implemented in a children's hospital setting.

When there is nothing left to do, there is everything left to do.

Circle of Life Hospice in Reno, Nevada is not only a special place for patients and their families to find peace through a sense of meaning and purpose at the end of their life but is also an important place for staff to take care of each other as they take care of those who are dying. The Circle of Life Hospice provides a unique opportunity to examine carefully the power of providing an outlet for hospice staff to process their grief and offer support for one another so that they can continue to give the "everything that there is to do to" to their patients.

The academic hospice.

The academic hospice is a recent development in health care. Hospice programs and hospitals evolved from the same historical roots in Greek and Roman medicine. The academic hospital emerged as a place where patient care, education, and research are pursued as inextricable parts of the mission. The unique role of the academic medical center in health care is supported by the government, the medical profession, and the public. This article provides a perspective on the emergence of the academic hospice. Dr. Cicely Saunders, who died on 14 July 2005, founded the first such hospice in London, England, in 1967. The authors show that the philosophy of hospice care has the same historical roots as standard health care and describe those elements that distinguish academic hospice programs from other kinds of hospice programs. Finally, the authors note that demographic and economic challenges in the United States and elsewhere only increase the need for academic hospice programs.