A scale to assess religious beliefs in end-of-life medical care.

BACKGROUND: Studies postulate that certain religious beliefs related to medical care influence the end-of-life (EOL) medical decision making and care of patients with advanced cancer. Because to the best of the authors' knowledge no current measure explicitly assesses such beliefs, in the current study the authors introduced and evaluated the Religious Beliefs in EOL Medical Care (RBEC) scale, a new measure designed to assess religious beliefs within the context of EOL cancer care. METHODS: The RBEC scale consists of 7 items designed to reflect religious beliefs in EOL medical care. Its psychometric properties were evaluated in a sample of 275 patients with advanced cancer from the Coping With Cancer II study, a National Cancer Institute-funded, multisite, longitudinal, observational study of communication processes and outcomes in EOL cancer care. RESULTS: The RBEC scale proved to be internally consistent (Cronbach α, .81), unidimensional, positively associated with other indicators of patients' religiousness and spirituality (establishing its convergent validity), and inversely associated with patients' terminal illness understanding and acceptance (establishing its criterion validity), suggesting its potential clinical usefulness in promoting informed EOL decision making. The majority of patients (87%) reported some ("somewhat," "quite a bit," or "a great deal") endorsement of at least 1 RBEC item and a majority (62%) endorsed ≥3 RBEC items. CONCLUSIONS: The RBEC scale is a reliable and valid tool with which to assess religious beliefs within the context of EOL medical care, beliefs that frequently are endorsed and inversely associated with terminal illness understanding.

Perinatal hospice care in the opinion of nurses and midwives.

OBJECTIVES: Perinatal medicine is a relatively new, dynamically developing branch of medicine. Its main purpose is taking care of a woman in the pre-conception period, pregnancy and delivery, as well as taking care of a newborn baby. The main aim of the study was to assess the state of knowledge and opinion on hospice perinatal care of professionally active nurses and midwives. MATERIAL AND METHODS: An original and anonymous questionnaire containing 30 questions was used for the study. 572 nurses and midwives from the Silesian Voivodeship took part in the study. The obtained data were analyzed. RESULTS: Only 31.6% of respondents defined the level of their knowledge of pregnancy and neonatal care as high. 12.8% of respondents were able to indicate the definition of perinatal care and accurately determine its goals. The women participating in the study were in favor of enclosing the information about not attempting resuscitation (DNAR) in medical record of children with incurable disease diagnosed in fetal life (99.3%). CONCLUSIONS: The study showed deficits in practical and theoretical knowledge of nurses and midwives in the area of hospice perinatal care. Lack of proper preparation is also one of the most frequently mentioned difficulties in taking care of a child and family with poor prognosis.

Integrating Palliative and Oncology Care for Patients with Advanced Cancer: A Quality Improvement Intervention.

BACKGROUND: Practice guidelines recommend palliative care for patients with advanced cancer, but gaps in access and quality of care persist. OBJECTIVE: To increase goals-of-care (GOC) communication for hospitalized patients with Stage IV cancer. METHODS: An interdisciplinary team designed a quality improvement intervention to enhance oncology palliative care, including training in communication skills and triggers for palliative care consults. SETTING/SUBJECTS: All adult inpatients with Stage IV cancer and unplanned admission at an 804-bed hospital affiliated with a National Cancer Institute (NCI) Comprehensive Cancer Center. MEASUREMENTS: The primary quality measure was the percentage of patients with Stage IV cancer who had a GOC discussion during hospitalization; secondary measures included screening for pain, dyspnea, spiritual needs, and outcomes of intensive care, hospice, and 30-day readmission. RESULTS: In the 11-month study period, n = 330, Stage IV cancer patients were hospitalized. Comparing the first three months with the final three months, rates of GOC discussion increased from 29% to 48% (p = 0.013), and specialty palliative care consultation increased from 18% to 33%, (p = 0.026). Rates of symptom screening, intensive care unit transfer, hospice, and 30-day re-admission did not change overall. However, patients with specialty palliative care more frequently had pain screening (91% vs. 81%, p = 0.020), spiritual assessment (48% vs. 10%, p < 0.001), and hospice referral (39% vs. 9%, p < 0.001), and they were less likely to be re-admitted within 30 days (12% vs. 21%, p = 0.059). DISCUSSION: Interdisciplinary quality improvement was effective to increase GOC discussions and palliative care consults for patients with Stage IV cancer.

Perceptions of family members of palliative medicine and hospice patients who experienced music therapy.

PURPOSE: Evidence shows that music therapy aids in symptom management and improves quality of life for palliative medicine and hospice patients. The majority of previous studies have addressed patient needs, while only a few addressed the needs of family members. The primary purpose of this study was to understand family members' perceptions of music therapy experienced by a relative in palliative medicine or hospice. Patient self-reported scales and music therapist assessment of change were also investigated. METHODS: Patients scored their symptoms (pain, anxiety, depression, shortness of breath, and mood) before and after music therapy sessions. One family member present during the session assessed perceived effect on the patient's pain, anxiety, depression, shortness of breath, stress level, restlessness, comfort level, mood, and quality of life. The effect on family member's stress level, quality of life, and mood and helpfulness of the music therapy session for the patient and self were studied. Recommendations about future patient participation in music therapy and qualitative comments were also solicited. RESULTS: Fifty family member/patient dyads participated in the study. Family member perceptions were positive, with 82% of responders indicating improvement for self and patient in stress, mood, and quality of life; 80% rating the session as extremely helpful; and 100% of 49 recommending further music therapy sessions for the patient. Patients reported statistically significant improvement in pain, depression, distress, and mood scores. CONCLUSIONS: Family members of patients in palliative medicine and hospice settings reported an immediate positive impact of music therapy on the patient and on themselves. More research needs to be conducted to better understand the benefits of music therapy for family members.

Incorporating Peplau's Theory of Interpersonal Relations to Promote Holistic Communication Between Older Adults and Nursing Students.

With the increased life expectancy, older adults will interact with multiple health care providers to manage acute and chronic conditions. These interactions include nursing students who use various health care settings to meet the clinical practicum requirements of their programs. Nursing faculty are charged with facilitating students' learning throughout the program from basic human needs, to holistic communication, to advanced medical surgical concepts. Despite educating students on holistic communication, there remains a lack of a reliable framework to undertake the task of teaching holistic communication skills. Nursing students preparing to function as licensed practitioners need to develop appropriate knowledge to holistically care for older adults. The purpose of this article is to examine Hildegard Peplau's interpersonal relations theory as a framework to assist nursing students to understand holistic communication skills during their encounters with older adults. Peplau's theory provides nursing a useful set of three interlocking and oftentimes overlapping working phases for nurses' interaction with patients in the form of the nurse-patient relationship. Nursing education could adopt the three phases of Peplau's interpersonal relations theory to educate students on holistically communicating with older adults.

What consumers want to know about quality when choosing a hospice provider.

Despite the availability of endorsed quality measures and widespread usage of hospice, hospice quality data are rarely available to consumers. Moreover, little is known about how consumers prioritize extant measures. This study drew on focus group and survey data collected in 5 metropolitan areas. The study found that consumers reported the hospice quality indicators we tested were easy to understand. Participants placed top priority on measures related to pain and symptom management. Relative to consumers with hospice experience, consumers without previous experience tended to place less value on spiritual support for patients and caregivers, emotional support for caregivers, and after-hours availability. The National Quality Forum-approved measures resonate well with consumers. Consumers also appear to be ready for access to data on the quality of hospice providers.

Family caregiver participation in hospice interdisciplinary team meetings: how does it affect the nature and content of communication?

Collaboration between family caregivers and health care providers is necessary to ensure patient-centered care, especially for hospice patients. During hospice care, interdisciplinary team members meet biweekly to collaborate and develop holistic care plans that address the physical, spiritual, psychological, and social needs of patients and families. The purpose of this study was to explore team communication when video-conferencing is used to facilitate the family caregiver's participation in a hospice team meeting. Video-recorded team meetings with and without family caregiver participation were analyzed for communication patterns using the Roter Interaction Analysis System. Standard meetings that did not include caregivers were shorter in duration and task-focused, with little participation from social workers and chaplains. Meetings that included caregivers revealed an emphasis on biomedical education and relationship-building between participants, little psychosocial counseling, and increased socioemotional talk from social workers and chaplains. Implications for family participation in hospice team meetings are highlighted.

Role of hospice and home care in a reformed care delivery system: ACOs, bundling, transitions in care, and more.

The way we deliver health care is changing fast and going in the direction of home care and hospice. This timely program addressed the threshold question of how your organization should play a part in a new arena that includes accountable care organizations, bundling of post-acute care, and integrated transitions in care. Should you be a partner with other health care sectors, assuming some of the financial risk for the success or failure of the endeavor? Should you choose instead to be an active participant or possibly a vendor to an integrated health delivery model? Join our panel as they discussed how to determine your role and gauge the community of health in which you function.

An exploration of parents' and young people's perspectives of hospice support.

BACKGROUND: Hospices are an important component of children's palliative care provision and increasing numbers of children/young people with life-limiting conditions mean that the demand placed on them for support is likely to increase. However, there has been a lack of published research examining how families experience the support provided by children's hospices. METHODS: The aim of the study was to investigate parents' and young people's perceptions of hospice support and identify how support could be improved. A mixed-method approach was used involving a postal survey of families and in-depth qualitative interviews with a purposively sampled subsample of parents and young people. RESULTS: A total of 108 (49.8% response rate) questionnaires were returned and interviews were conducted with 12 parents and seven young people. Families were highly satisfied with the support provided in terms of quality of care; interpersonal qualities of the staff; the individualized, family-focused approach; accessibility of support and involvement in decision making. Young people valued the opportunity to meet with other young people and take part in different activities. For parents the provision of a break from caring was the main way in which they were supported although they felt they wanted more of this form of support. A consistent theme in relation to support for young people and siblings was the need to develop facilities, activities and bereavement support specifically for teenagers/young people. CONCLUSIONS: Parents value a model of care that provides holistic, family-focused support that is responsive to individual needs and which promotes control and active involvement in decision making. The key challenge now is to respond to increasing need and a changing population of users.

Assessment of hospice health professionals' knowledge, views, and experience with medical marijuana.

The medicinal and recreational use of cannabis has been controversial, especially in the United States. Marijuana for medicinal use is approved in 14 U.S. states and has recently been considered for legalization in several additional states. Given its demonstrated efficacy in symptom management, marijuana has a potential role in palliative care. This study utilized a 16-item questionnaire to assess the knowledge, experience, and views of hospice professionals regarding the use of marijuana in terminally ill patients. The study results revealed that, like the general public, hospice health care providers are generally in favor of legalization of marijuana and, if legalized, would support its use in symptom management for their terminally ill patients.

The outcomes of palliative care day services: a systematic review.

This systematic review evaluates the evidence underpinning the provision of palliative day care services (PDS) to determine whether such services have a measurable effect on attendees' wellbeing. The majority of studies reviewed were qualitative and elicited individual perceptions of the benefits PDS. Although it was difficult to determine the quality of many studies, it would appear that attendance at PDS had a positive impact on attendees' quality of life. Fewer studies utilized validated outcome measures to determine the effect of PDS on attendees' wellbeing and small sample sizes combined with high attrition rates influenced the significance of some the results. However little quantitative evidence was offered to prove that PDS had an impact on attendees' quality of life or wellbeing. The review concludes that dying people find attending PDS a valuable experience that allows them to engage with others and to be supported in a restorative environment. However, further well-powered empirical studies are required to provide quality evidence to determine whether or not attendance at PDS does indeed have a positive impact on the wellbeing of attendees.

Informal caregivers of cancer patients: perceptions about preparedness and support during hospice care.

This study examined the perceptions of preparedness and support of informal caregivers of hospice oncology patients. Respondents included coresiding, proximate, and long-distance caregivers. Thematic analysis was used to analyze the qualitative data from 2 caregiver surveys, one administered prior to the care recipient's death and another completed 3 months postdeath. Respondents (N = 69) interpreted preparedness broadly and identified multiple sources of support including hospice personnel, family, friends, neighbors, and spiritual beliefs. Additionally, informational support, such as education, information, and enhanced communication were considered essential for preparing and supporting caregivers. Implications for social work research and practice are provided.

Avaliação do instrumento Edmonton Symptom Assessment System em cuidados paliativos: revisão integrativa / Evaluación de la herramienta Edmonton Symptom Assessment System en cuidados paliativos: una revisión integrador / Assessment of the instrument Edmonton Symptom Assessment System in hospice care: an integrative review

Cuidados Paliativos (CP) são prestados a pacientes fora de possibilidades terapêuticas de cura, tendo como foco o controle dos sintomas e melhora da qualidade de vida. A Edmonton Symptom Assessment System (ESAS) é um instrumento para avaliar e monitorar nove sintomas físicos e psicológicos em pacientes de CP. O estudo objetiva realizar revisão integrativa acerca da avaliação dos profissionais de saúde e/ou pacientes quanto ao uso da ESAS em pacientes oncológicos em Cuidados Paliativos. Foram localizados oito artigos no Medical Literature Analysis and Retrieval System Online (MEDLINE) entre 1998 e 2009. Os resultados mostraram que apesar de haver poucos estudos sobre este assunto, a ESAS é um instrumento válido para detectar e monitorar sintomas nos CP, apresentando algumas limitações. Os resultados apontam para a importância da continuidade do estudo de tradução e adaptação transcultural desta escala para o português do Brasil.

A los pacientes fuera de posibilidades terapéuticas de cura, se brindan cuidados paliativos teniendo como objetivo el control de los síntomas y la mejora de la calidad de vida. La Edmonton Symptom Assessment System (ESAS) es una herramienta para evaluar y monitorear nueve síntomas físicos y psicológicos en pacientes de CP. Este estudio objetiva realizar una revisión integradora acerca de la evaluación de los profesionales de salud y/o pacientes en cuanto al uso de ESAS en pacientes con cáncer en cuidados paliativos. Se encontraron ocho artículos en Medical Literature Analysis and Retrieval System Online (MEDLINE) entre 1998 y 2009. Los resultados revelaron que aunque hay pocos estudios sobre el tema, la ESAS es una herramienta válida para detectar síntomas en los CP, aunque presente algunos límites. Los resultados señalan la importancia de la continuidad del estudio de traducción y adaptación transcultural de esa escala al portugués de Brasil.

Hospice Care (HC) is given to patients out of therapeutic possibilities of cure, focusing on symptoms control and life quality. The Edmonton Symptom Assessment System (ESAS) is an instrument to assess and monitor nine physical and psychological symptoms in patients in HC. The study aims to perform an integrative review on the assessment of health professionals and/or patients regarding the use of ESAS in cancer patients in Hospice Care. Eight papers have been localized at Medical Literature Analysis and Retrieval System Online (MEDLINE) between 1998 and 2009. The results displayed that although there are few studies on this topic, the ESAS is a valid instrument to detect and monitor symptoms in HC, presenting some limitations. The results led to the importance of the study continuity in translation and cross-cultural adaptation of this scale to Brazilian Portuguese.

[Assessment of the instrument Edmonton Symptom Assessment System in hospice care: an integrative review]. / Avaliaçao do instrumento Edmonton Symptom Assessment Systemem cuidados paliativos: revisão integrativa.

Hospice Care (HC) is given to patients out of therapeutic possibilities of cure,focusing on symptoms control and life quality. The Edmonton Symptom Assessment System (ESAS) is an instrument to assess and monitor nine physical and psychological symptoms in patients in HC. The study aims to perform an integrative review on the assessment of health professionals and/or patients regarding the use of ESAS in cancer patients in Hospice Care. Eight papers have been localized at Medical Literature Analysis and Retrieval System Online (MEDLINE) between 1998 and 2009. The results displayed that although there are few studies on this topic, the ESAS is a valid instrument to detect and monitor symptoms in HC, presenting some limitations. The results led to the importance of the study continuity in translation and cross-cultural adaptation of this scale to Brazilian Portuguese.

End-of-life care in heart failure.

The clinical syndrome of heart failure is increasing in prevalence, as is the number of elderly persons with heart failure. Increasing frailty and progression of heart failure in large numbers of patients means clinicians are increasingly challenged to provide end-of-life care for heart failure patients. End-of-life care has been little studied, but management can be understood from early clinical trials of advanced heart failure. Evidence-based heart failure medications, including angiotensin-converting enzyme inhibitors and beta blockers, improve symptoms in patients with advanced heart failure and depressed ejection fraction and should usually be continued in end-stage disease. Patients also should have ongoing meticulous management of fluid status to maximize quality of life. End-of-life care should be planned with the patient and family and should incorporate comprehensive symptom management, bereavement support, and spiritual support. Ongoing communication with patients and families about prognosis can ease the planning of care when the end of life nears.

Integrating palliative care: a postmodern perspective.

Hospice and palliative care philosophy is becoming increasingly incorporated into medical practice, education, and research. However, this process of integration may be hindered by continued adherence to several perceived conceptual dichotomies: natural and medicalized death, research and clinical care, and acceptance and denial of dying. These dichotomies were perhaps essential for the initial development of palliative care but could undermine the continuing evolution of care for the terminally ill. In this article, the authors deconstruct these dichotomies and advocate for a fully integrated model of palliative care.

How do people with cancer wish to be cared for in primary care? Serial discussion groups of patients and carers.

BACKGROUND: In most economically developed countries, patients, their informal and professional carers and policy makers are calling for more care in the community. OBJECTIVES: To involve patients with cancer, and their carers, in designing a framework for providing effective cancer care in primary care. METHODS: Two discussion groups comprising 18 people with current cancer and carers met monthly over a year in the south of Scotland. RESULTS: Patients with cancer and their carers identified five key times in the cancer journey as being especially significant from their perspective: around diagnosis, during treatment, after discharge, at recurrence and the final weeks. At each key time, there were five major issues of concern: information, communication, equity, a holistic approach and patient-centred care. Using these, the group members developed a checklist of recommended interventions for each stage in the illness trajectory and suggested how they might be implemented in primary care. Proactive and ongoing contact, if wished by the patient, was considered the central plank of cancer care in the community. CONCLUSIONS: Patients with cancer and their carers believe that there is an important and unique role for primary care in offering continuity of care and information that is patient-centred and holistic, throughout the cancer trajectory, from first presentation. This study successfully brought patient, carer and professional perspectives to the development of a care framework for primary care.