Palliative Care Framework Research Articles

An Ethical Argument for Integrated Palliative Care.

‘In the midst of life, we are in death’from The Book of Common PrayerThe Palliative Care, or comfort care, movement in the USA is on the rise. Currently, palliative services are not integrated in an organized way throughout healthcare. If we accept the argument that palliative care is ethically desirable and that all patients are entitled to palliative services regardless of a terminal diagnosis, it follows that it needs to be integrated across a wide range of healthcare services. Ethical questions regarding palliative care and well-known ethical frameworks are discussed and an argument is made for integrating palliative healthcare services throughout the healthcare system and not simply at the end of life. Complementary and alternative medicine (CAM) therapies are discussed as useful and necessary components of palliative care. If we as a society look beyond separating cures and palliation, we will come closer to incorporating compassionate care throughout the disease process.

Strain Experienced by Caregivers of Dementia Patients Receiving Palliative Care: Findings from the Palliative Excellence in Alzheimer Care Efforts (PEACE) Program

Programs that provide palliative care to individuals with dementia, which is a progressive terminal illness, are likely to encounter different issues (e.g., management of problem behaviors, caregiver strain extending over years) from those typically addressed by hospice programs. Little research is available on palliative care for individuals with dementia who live in the community. This study examines predictors of types of strain experienced by caregivers of community-dwelling patients with dementia enrolled in a unique demonstration program titled Palliative Excellence in Alzheimer Care Efforts (PEACE), which moved palliative care "upstream," integrating palliative care into the primary care of patients with dementia. Data were collected through structured, face-to-face interviews with 150 community-dwelling, predominantly African American patient-caregiver dyads who were enrolled in the PEACE program. Established measures, including the Caregiver Strain Index, the Revised Memory and Behavior Problems Checklist, and the Katz Index of Activities of Daily Living, were used in addition to other measures assessing caregiver, patient, and situational characteristics. Factor analysis of the Caregiver Strain Index revealed three dimensions of strain (role, personal, and emotional) related to caregiving. Using a stress process model, regression analyses examined stressors and resources related to patient, caregiver, and support system characteristics in predicting these three dimensions of strain among caregivers. Patient problem behaviors predicted all types of caregiver strain. Perceived lack of support from the health care team predicted personal and emotional strain, whereas higher income, surprisingly, predicted role strain. Patient functional limitations predicted personal and role strain. Findings suggest that effective palliative care programs for patients with dementia need to understand and address the various sources and types of caregiver strain; provide adequate support to caregivers for the management of problem behaviors; provide counseling to help cope with the emotional reactions to the cognitive and behavioral changes associated with dementia progression; facilitate communication with the health care team; and broker access to community and other resources for assistance with functional limitations. Further research examining changes in strain over time will provide useful insights on the delivery of care and services for patients with dementia and their families in a palliative care framework.

National Consensus Project for Quality Palliative Care: Clinical Practice Guidelines for Quality Palliative Care, Executive Summary

National Consensus Project for Quality Palliative Care: Clinical Practice Guidelines for Quality Palliative Care, Executive Summary

A new international framework for palliative care

In spite of recent advances in anti-cancer treatments, most adult cancer patients still ultimately die from their disease. There should therefore be free access to palliative care around the clock and seven days a week, for all cancer patients, as a fundamental human right. At present, the implementation of palliative care and patients' access to it are inconsistent across Europe and many other parts of the world. The World Health Organisation (WHO) made an important advance in 1986 by first defining palliative care and, then updating this definition in 2002. However, this definition could benefit from further refinement in order to reflect the increasing multi-professional specialisation in this subject, and to recognise the different models for delivering this type of care. We recommend that palliative care should be defined as follows: • Palliative care is the person-centred attention to symptoms, psychological, social and existential distress in patients with limited prognosis, in order to optimise the quality of life of patients and their families or close friends. Based on this definition, we propose two further types of palliative care which reflect the reality of how palliative care is actually delivered: • Basic palliative care is the standard of palliative care which should be provided by all healthcare professionals, in primary or secondary care, within their normal duties to patients with life-limiting disease. • Specialised palliative care is a higher standard of palliative care provided at the expert level, by a trained multi-professional team, who must continually update their skills and knowledge, in order to manage persisting and more complex problems and to provide specialised educational and practical resources to other non-specialised members of the primary or secondary care teams. If a patient has difficult symptoms which cannot be controlled by his/her current healthcare team, he/she has a right to be referred, and the current healthcare provider has an obligation to refer, to the local palliative care team. Important priorities to ensure the standardisation of, and uniform access to, palliative care for all cancer patients include: • Integration of palliative care services with the primary care and oncology teams. • Establishment of a specialised palliative care service in each major cancer centre. • Establishment of educational programmes covering palliative care for undergraduates, oncologists, primary care team members and specialists training in palliative care. • Support for research using appropriate methodologies to underpin the scientific basis of palliative care. • Establishment of quality assurance programmes. • Recognition of palliative medicine as a medical specialty. • Establishment of academic centres of excellence with chairs of palliative medicine and palliative care nursing. • Removal of unnecessary restrictions on all drugs which are proven to be of benefit in symptom control, especially improving access to strong opioids. • Improved information for patients and family carers to allow them to make choices and exercise autonomy.

Review of Transitions in Dying and Bereavement: A Psychosocial Guide for Hospice and Palliative Care.

THE VICTORIA HOSPICE SOCIETY MOIRA CAIRNS, MARNEY THOMPSON, and WENDY WAINWRIGHT Transitions in Dying and Bereavement: A Psychosocial Guide for Hospice and Palliative Care Baltimore, MD: Health Professions Press, 2003, 408 pages (ISBN 1-87881-292-0, US$44.95 Paperback) This psychosocial guide book for hospice and palliative care represents joint effort between staff and volunteers of Victoria Hospice Society, Victoria, BC, in operation since 1980, and three talented clinicians with background in counseling, palliative care, and The staff at Victoria Hospice has been actively involved, provincially and nationally, in development of number of initiatives for palliative care training, advocacy and research, latter being weakest of their initiatives. The main objective of this book was to describe what palliative and bereavement counselors do and how they do it. The specific goal was to examine psychosocial needs and care of individuals who are dying or bereaved, with ultimate goal being improvement of quality of palliative psychosocial care services. Each chapter addresses significant transitions, identifies psychosocial issues that patients and fami lies may face, addresses team issues, and suggests tips and interventions. case studies provide human context behind these issues. My own voice presents personal stories and insights of individuals other than authors regarding care for dying patients. Perspective sections address important and overarching topics relevant to most transitions. The book starts with principles of palliative hospice care, description of Victoria Hospice's program and team, key concepts, and framework and model used to organize book (Chapter 1). Bates's (1993) definition of psychosocial domain is used to set scope of area, encompassing emotional, intellectual, spiritual, interpersonal, social, cultural and economic dimensions of dying and bereavement. In Chapter 2, they discuss psychosocial assessment and provide questions for conducting such assessment. They state that psychosocial assessments provide a core standardized reference information regarding patients... Unfortunately, no information is provided regarding current attempts in field by authors or others to develop standardized psychosocial assessment instruments to be used during palliative care and The framework for palliative care is provided by Palliative Performance Scale (PPSv2), and model of grief is based on Rando's (1984) phases of grief and Worden's (1992) grief's tasks. A metaphor of last journey through life is used along with PPSv2 to discuss transitions in palliative care and metaphor of walking through labyrinth is used to represent bereavement journey toward healing after loss. The PPSv2 is recommended as tool to assess patients who are dying. PPSv2 is an unpublished version of Palliative Performance Scale (Anderson, Downing, Hill, et al., 1996). Although The PPSv2 is recommended to assess patients who are dying, no information is provided in book (or in its web site reference) about whether this or original version is reliable and valid. The original PPS (Anderson et al., 1996) and PPSv2 only assess general physical functioning, mobility, intake, and conscious level. Based on their extensive clinical experience, in Chapter 2 authors describe psychosocial issues arising during dying journey, discuss importance of psychosocial assessment, and suggest assessment questions to ask. For psychosocial guide on palliative care, it is unfortunate that issues related to standardized psychosocial assessments are not discussed, as it would be useful to reflect on stage of scientific validity of palliative care field in general. The chronicity of disease and its recurrence, which is appropriately called the path not chosen, along with worst fears facing families are described in Chapter 3. …

Therapeutic ratio and defined phases: proposal of ethical framework for palliative care.

radiation and surgical intervention and, in addition, resources are wasted. Large studies of children who have swallowed foreign bodies do not show that ingested coins that have passed beyond the cardia cause complications in children with a normal gastro? intestinal tract13; only one such case seems to have been described.4 Furthermore, the potential hazard of prolonged asymptomatic gastric retention of swallowed coins (more than two weeks) may have been exag? gerated. In our experience such coins eventually pass spontaneously and, under experimental conditions of gastric acidity, the dissolution of toxicologically significant quantities of metal is unlikely to occur (I M House, National Poisons Unit, Guy's Hospital, London, personal communication). The management of swallowed coins in children in the United Kingdom could be improved. Adopting the scheme outlined in the figure would reduce the radiation dose received by many children and produce a considerable financial saving. An initial single antero posterior radiograph of the neck and chest is advisable even in asymptomatic patients because of the dangers from silent oesophageal impaction.5 A lateral radio? graph may then be necessary to localise coins in the neck and upper chest. When the coin is below the cardia only symptomatic patients require further assessment. Searching of stools is both unpleasant and inaccurate.