Ongoing Palliative Care Research Articles

Feelings of rewards among family caregivers during ongoing palliative care

Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age. The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann-Whitney U test was used to compare differences between groups of different sex and age. Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women. Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.

On-Going Palliative Care Enhances Perceived Control and Patient Activation in Patients with Symptomatic Heart Failure

Few studies have assessed the effectiveness of palliative care (PC) on perceived control (i.e. one's perceived influence over outcomes or events in the environment) and activation (i.e. ability to self-manage) in patients with symptomatic heart failure (HF).

Evidence-based planning and costing palliative care services for children: novel multi-method epidemiological and economic exemplar

BackgroundChildren’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar.MethodsMulti-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home.ResultsThe exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices).ConclusionsFindings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings.

Palliative Care 101 for Medical Interns: the Palliative Care Education Unit (S742)

1.Discuss methods and results of a palliative care educational initiative targeting medical interns.2.Discuss ideas about ways to expand and implement palliative care education targeting medical interns at other institutions. The Internal Medicine Residency Program at Weill Cornell restructured its graduate medical education curriculum and developed educational units for the intern class to enhance education in a setting protected from patient care responsibilities. To develop and implement an interactive educational curriculum targeting medical interns to enhance their knowledge, skills, and attitudes related to palliative care. The Palliative Care Educational Unit comprised of 2-week blocks in which all of the interns participated in a 12-hour palliative care curriculum. The four sessions were entitled a) Death and Dying, b) Care Transitions, c) Communicating with critically ill patients and their families, and d) Prognostication and Hospice care. At the end of the last session, the interns were asked to fill out a self-assessment survey, and retrospectively rate their pre- and post- session competency in completing palliative care related tasks. Medical interns reported significant improvements in their self-competency in actively participating in seven specific tasks: 1) conducting family meetings, 2) breaking bad news, 3) discussing DNR, 4) discussing home hospice care, 5) discussing a shift in the goals of care, 6) discussing advanced directives, and 7) discussing home care options with patients and their families. The educational unit received an overall rating 4.09 on a 5 point Likert scale. The Residency Program acknowledged and embraced the need for ongoing palliative care education for its house staff. The unit helped provide interns with a basic foundation in palliative care.

Continuing methadone for pain in palliative care.

Methadone is one of the most important medications used for the treatment of refractory pain in the palliative care setting, and is usually initially prescribed by one of a limited number of physicians who have acquired authorization for its use. A lack of authorized physicians able to take over prescribing when the patient is stable is a barrier to accessing methadone for analgesia. To determine the barriers to family physicians becoming authorized to prescribe methadone for pain in palliative care. A survey exploring the perceived barriers to continuing methadone for pain in palliative care following initial prescription by a specialist was mailed to a randomly selected group of 870 family physicians in British Columbia. The response rate was 30.9%. Of the 204 responding physicians, 76.1% described themselves as positioned to provide ongoing palliative care to their patients. Within this group, 38 (18.6%) were already authorized to prescribe methadone for pain. The remaining 166 (81.4%) had significant knowledge deficits regarding methadone use in palliative care, but were largely aware of their deficits, and more than one-half were willing to learn more and to obtain an authorization if requested. Responding family physicians had mostly received little education regarding methadone for pain, but were aware of their need for education and were willing to learn. Physicians who had already become authorized were generally satisfied with the process of authorization, and believed the process of education through authorization was appropriate and not onerous.

Effects of a support group programme for patients with life-threatening illness during ongoing palliative care

Background: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support. Aim: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care. Design: A prospective quasi-experimental design, including an intervention group and a comparison group, was used. Settings/participants: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons. Results: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes. Conclusions: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.

Unique Manifestations of Catecholamine Release in Malignant Pheochromocytoma: An Experience Within an Inpatient Palliative Care Unit

Malignant pheochromocytoma is a rare disorder. We describe the case of a 41-year-old female with disseminated metastatic pheochromocytoma who was admitted for ongoing palliative and supportive care within an inpatient palliative care unit. Predominant symptoms included severe gastrointestinal pseudo-obstruction and orthostatic hypotension Pseudo-obstruction management included percutaneous enterogastric and percutaneous enterojejunostomy tubes for gastric decompression and delivery of nutrition, respectively. Debilitating symptoms of orthostatic hypotension were mitigated with judicious fluid balance and appropriate use of adrenergic blocking agents. The potential for metoclopramide to worsen symptoms also was a significant component of management. The case presents rare features of this unusual disease and is unique for its setting within the confines of a palliative care unit.

An Unlikely Union: Palliative Care and Wellness (400)

1.Discuss the role of palliative care as a component of cancer survivorship and chronic disease management.2.Describe a high functioning model of collaboration between palliative care teams, primary care clinicians, and subspecialists across the continuum of care for patients with cancer and other chronic illnesses.3.List common conditions warranting palliative care in cancer survivors and in selected chronic diseases, along with appropriate therapies. Many clinicians equate palliative care with end-of-life care and consult palliative care teams only after transitioning from “curative” therapies to end-of-life care. Recent literature demonstrates numerous advantages when cancer patients with advanced stage disease receive palliative care from the onset of cancer diagnosis and throughout their illness spectrum. Less attention has been paid to the palliative care needs of cancer survivors or patients with other chronic diseases in every stage of their illness. Using cancer survivorship as a model, this session will explore the role of palliative care in chronic disease more broadly. The presenters will outline how principles from cancer survivorship and palliative care can be integrated within the care of other chronic diseases, such as neurological disease, renal, lung, or cardiac disease. They will review palliative care needs and treatment options throughout the continuum of care in chronic illness, including cancer survivorship. Models of collaboration between disease-oriented subspecialists, primary care clinicians, and palliative care teams will be highlighted, including strategies to facilitate optimal transition from “active treatment” by subspecialists back to longitudinal care by primary care clinicians with ongoing palliative care support. Common symptom complexes in cancer survivorship and chronic disease will be presented, along with interventions that palliative care teams can provide to support referring clinicians. The presenters include a palliative care physician with comprehensive primary care experience, a palliative care nurse practitioner with an extensive background in oncology nursing, and a psycho-oncologist specializing in cancer survivorship. The presentation will blend didactic materials, clinical case presentations, and facilitated audience participation.

Meeting needs of family members of persons with life-threatening illness: A support group program during ongoing palliative care

The aim of the study was to describe family members' experiences of content, structure, and approach of a potential intervention including a support group program for family members of persons with life-threatening illness. The study was a pilot project in a developmental phase in which a potential intervention, a support group program, was investigated. The design of the study was qualitative descriptive. Twenty-nine family members were interviewed by telephone after taking part in the program. The interviews were analyzed using qualitative content analysis. The results indicate that the support group program could work as an acceptable and useful intervention for family members. The program was experienced to cover topics of immediate interest reflecting life close to severely ill persons. The structure of the program was found to be inviting, offering an opportunity to establish relationships with other participants and the caring team in a warm atmosphere. The study indicates the importance of health professionals inviting and interacting with family members during ongoing palliative care. The results could inspire nursing staff to initiate, develop, and deliver similar interventions.

Making difficult conversations easier: the cards, the kit and the quill

The preferences of patients, families and health professionals for preparations for dying have been identified by Steinhauser (JPSM September 2001;22(3)).Based on this work, CodaAlliance has developed the ‘GoWish’ card game...

What is a ‘secure base’ when death is approaching? A study applying attachment theory to adult patients' and family members' experiences of palliative home care

Attachment theory has received much interest lately in relation to how adults cope with stress and severe illness. The aim of this study was using the experiences of patients and family members to explore palliative home care as a 'secure base' (a central concept within the theory). Twelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed with deductive qualitative content analysis. Informants expressed the relevance of sensing security during palliative home care because death and dying were threats that contributed to vulnerability. Palliative home care could foster a feeling of security and provide a secure base. This was facilitated when informants had trust in staff (e.g. due to availability and competence in providing symptom relief), felt recognised as individuals and welcomed to contact the team in times of needs. Being comfortable, informed and having an everyday life also contributed to a perception of palliative home care as a secure base. Family members stressed the importance of being relieved from responsibilities that were too heavy. The underlying meanings of experiencing palliative home care as a secure base involved gaining a sense of control and of inner peace, perceiving that despite a demanding and changed life situation, one could continue partially being oneself and having something to hope for, even if this no longer concerned cure for the ill person. Important aspects of palliative home care as providing a secure base were identified and these have implications for clinical practice.

A study of nurses’ knowledge of a palliative approach in residential aged care facilities

Aim. To identify residential aged care nurses' current knowledge of palliative care for older residents in need of end-of-life care. Background. Recently, there has been a growing interest in the delivery of palliative care in residential aged care facilities. While it is recognized that aged care nurses do possess palliative care knowledge the actual level of their knowledge has not been well documented. Design/method. An analytical study using a validated questionnaire tool - Palliative Care Quiz for Nursing, developed by Ross etal. [Journal of Advanced Nursing23 (1996) 126-137], combined with a demographic survey of Registered Nurses and assistants in nursing working in five high care residential aged care facilities in inner city region of Sydney, Australia. Results. The total Palliative Care Quiz for Nursing score possible was 20. The mean score for Registered Nurses was 11.7 (SD 3.1) and for AINs 5.8 (SD 3.3), the difference between scores being significant (t = 8.7, df 95, P = 0.000). Misconceptions in palliative care were identified for both the groups of carers. Conclusion. This research has highlighted the need for ongoing palliative care education for both the groups of primary carers. Relevance to clinical practice. The findings of this research highlight the existing palliative care knowledge of residential aged care nurses and provides evidence for education programmes.

“Palliative Care: The Essentials”: Evaluation of a Multidisciplinary Education Program

Despite the world-wide growth of specialist palliative care services, the bulk of care and decision making at the end of life are delivered in general hospital, primary care, and aged care settings. Health workers of all disciplines therefore need to develop attitudes, knowledge, and skills required to deliver palliative care. To develop, deliver, and evaluate a short multidisciplinary education program focusing on the core elements of palliative care. A 2-day program was developed by an expert panel comprising academics, policy makers, clinicians, and a caregiver representative. Evaluation consisted of a pretest/posttest questionnaire aimed at identifying participants' palliative care knowledge and confidence at three time points; prior to attending the program, at the conclusion of the program, and 1 month later. In addition a session evaluation questionnaire sought to determine whether the session was interesting, informative, and useful. The program was delivered four times in both metropolitan and regional areas of Australia to a total of 537 participants incorporating a range of disciplines and care settings. Participants reported significant improvement in key areas including; ability to identify patients likely to benefit from a palliative approach, communication skills, symptom management, family-centered care, legal and ethical issues, and grief and bereavement. The majority of participants identified that the program increased their levels of interest, knowledge, and confidence in relation to palliative care. The findings demonstrate that multidisciplinary educational approaches of this type can be effective in the context of delivering palliative care education. The high demand to attend the program suggests the need for ongoing palliative care educational activities.

Participants’ Experiences of a Support Group Intervention for Family Members during Ongoing Palliative Home Care

The aim of this study was to describe family members' experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned "reasons for support group participation", "group composition contributed to group cohesion", "experience and sensitivity of group leader was a catalyst", "meaningful dialogue helped to solve everyday problems", "sense of cohesion increased effectiveness of the group", and "group sessions and post-session reflection increased perception of inner strength". Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups.

Next of kin's experience of powerlessness and helplessness in palliative home care.

Powerlessness and helplessness have been very little studied. The aims of this study were (1) to describe what characterise such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and (2) to make quantifications. The study design was cross-sectional and targeted next of kin during ongoing palliative home care and next of kin of patients who had died 3-9 months earlier; 233 next of kin responded (response rate 72%) to a postal questionnaire with both Likert-type and open-ended questions. The text responses were analysed with a combined qualitative and quantitative content analysis. Thirty-six percent of respondents stated that they had experienced powerlessness and/or helplessness every day or several times per week, whereas 33% had never had this experience during the palliative home care period. Powerlessness and helplessness concerned next of kin's perception of the patient's suffering, of the patient's fading away and the next of kin's own feelings of insufficiency and resulted in both physical and psychological symptoms, such as muscle tension, headache, loss of appetite, anxiety and depression. In addition, powerlessness and helplessness concerned also a deeper meaning with existential and social aspects, such as feelings of guilt, anger and loneliness. The main findings provide tools for the practitioner to identify situations contributing to next of kin's sense of powerlessness and helplessness. The findings are discussed in relation to the concepts of symptom control, communication of awareness and humans' search for action.

Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers.

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staff's ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care.