2018; Volume 19, No 7, July
Media Watch
An annotated list of recent articles about palliative care in the news media and the literature.
Media Watch is intended as an advocacy, education, and research tool. The weekly report, published by Barry R. Ashpole, a Canadian communications consultant and educator, monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. Each month, this section of the IAHPC Newsletter publishes selected abstracts or summaries of articles or reports of special interest from recent issues of Media Watch.
Quality of primary palliative care for older people with mild and severe dementia: An international mortality follow-back study using quality indicators
AGE & AGEING | Online – 8 June 2018 – While the countries studied differ in the overall quality of primary palliative care, they have similarities in room for improvement. First, the pain of more than half of patients across countries was not regularly measured, which is comparable to what was found in long-term and acute care settings. Pain is highly prevalent among older people with dementia, and if not treated adequately may lead to depression, agitation and aggression. Even where self-reporting is not possible due to cognitive decline, other strategies can be used, such as direct observation of behavioural cues and the use of validated tools such as Pain Assessment in Advanced Dementia Scale. In line with an earlier study, more than two-thirds of patients, particularly in Italy and Spain, appeared to have poor communication with GPs... While this poor communication with patients may be understandable due to cognitive decline, this study suggests that this is a problem even for people with mild dementia. Similar with an earlier study, the authors found high levels of relative-GP communication across the three countries, implying that GPs communicate more often with relatives than with patients, which seems to be an alternative to the poor communication with patients.
10.1093/ageing/afy087
Early and late signs that precede dying among older persons in nursing homes: The multidisciplinary team’s perspective
BMC GERIATRICS | Online – 4 June 2018 – It has been found that older persons at nursing homes receive far less palliative care (PC) than younger persons, partly because it is difficult to identify when the final stage of life begins. The teams [i.e., participants at four nursing homes in southern Sweden] working with the older person found it difficult to identify early signs that precede dying mainly because they did not see dying as a process but as a happening, restricted to the last weeks or days of the older person’s life. One early sign that the participants identified in different ways among the older persons was resignation, e.g., withdrawal from social contexts, lack of motivation and low mood. Another sign was that the older person developed a need to go through their life, from childhood to the present. Late signs that precede dying were familiar, observed by the staff in everyday practice.
DOI: 10.1186/s12877-018-0825-0
Integrative approaches in pediatric palliative care
CHILDREN | Online – 13 June 2018 – Integrative medicine is supported by evidence and aims to heal the whole person, including all aspects of one’s lifestyle. Therapies offered by integrative medicine often empower patients and families, allowing for a sense of control. This review addresses the merging of integrative medicine philosophy and modalities with the care given to children with life-limiting illness. The authors review an introduction to integrative medicine, trends in its incorporation in the healthcare setting, application to patients receiving palliative care and the management of specific symptoms. A case study is offered to illustrate these principles.
DOI: 10.3390/children5060075
Expanding patient access to investigational drugs: Single patient investigational new drug and the “right to try”
JOURNAL OF THE AMERICAN COLLEGE OF CARDIOLOGY: BASIC TO TRANSLATIONAL SCIENCE, 2018;3(2):280-293. With drug approval times taking an average of 8 years from entry into clinical trials to full U.S. Food & Drug Administration (FDA) approval, patients with life-threatening and severely debilitating disease and no reasonable therapeutic options are advocating for expanded access (EA) to investigational drugs prior to approval. Special investigational new drug (IND) application categories allow patients who meet specific criteria to receive treatment with non-approved drugs. The FDA approves over 99% of all single-patient INDs, providing emergency approval within hours, and non-emergency approval within an average of 4 days. “Right-to-try” laws passed in 38 states would allow patients to bypass FDA processes altogether, but contain controversial provisions that some claim risk more harm than benefit to desperate and vulnerable patients. This review focuses on FDA EA to non-approved drugs through a special category of IND – the single-patient IND – and “right-to-try” access outside of the FDA.
DOI: 10.1016/j.jacbts.2017.11.007
Related: False hope with the Right to Try Act
Delivery of pediatric cancer care in Mexico: A national survey
JOURNAL OF GLOBAL ONCOLOGY | Online – 12 June 2018 – First, considerable variation exists in annual case volumes, with one third of units treating < 30 patients per year. Second, availability of specialist providers, multidisciplinary tumor boards, and core diagnostic services is greater at medium- and high-volume centers compared with low-volume centers. Third, radiation services and palliative care clinics are only available at 42% and 63% of all centers, respectively. Fourth, one third of centers reported that at least one half of patients are lost to follow-up during the transition from pediatric to adult programs. Finally, commonly reported barriers to delivery of care relate to administration, patient socioeconomics, and limited access to specialized diagnostic and therapeutic services. With an 84% response rate, the study findings likely are generalizable to the overall Mexican childhood cancer care system. The 62 centers included in this study reported a total annual case volume of 4,225 patients. Application of the median case volume (50 per year) to the remaining 12 centers suggests approximately 4,825 new cases of pediatric cancer per year in Mexico. With a national population of approximately 39.2 million children (< 18 years of age), these figures generate an annual incidence of childhood cancer of approximately 123 per million... Recently published data have shown that annual incidence rates among 0- to 14-year olds may vary from < 50 per million in sub-Saharan Africa to 155 to 175 per million in Western Europe.
DOI: 10.1200/JGO.17.00238
Models for spiritual care in hospice and palliative care
KOREAN JOURNAL OF HOSPICE & PALLIATIVE CARE, 2018;21(2):41-50. The literature has provided ten evidence-based theories that can be used as models in hospice and palliative care (HPC). Three of the models focus on how the spiritual care outcomes of viewing spiritual health, quality of life, and coping, are important outcomes. The remaining seven models focus on implementation of spiritual care. The “whole-person care model” addresses the multidisciplinary collaboration within HPC. The “existential functioning model” emphasizes the existential needs of human beings. The “open pluralism view” considers the cultural diversity and other types of diversity of care recipients. The “spiritual-relational view” and “framework of systemic organization” models focus on the relationship between hospital palliative care teams and terminally ill patients. The “principal components model” and “actioning spirituality and spiritual care in education and training model” explain the overall dynamics of the spiritual care process. Based on these models, continuous clinical research efforts are needed to establish an optimal spiritual care model for HPC. [N.B.: English language article]
DOI: 10.14475/kjhpc.2018.21.2.41
Ambulance staff and end-of-life hospital admissions: A qualitative interview study
PALLIATIVE MEDICINE | Online – 11 June 2018 – Hospital admissions for end-of-life (EoL) patients, particularly those who die shortly after being admitted, are recognised to be an international policy problem. How patients come to be transferred to hospital for care, and the central role of decisions made by ambulance staff in facilitating transfer, are under-explored. Ambulance interviewees were broadly positive about enabling people to die at home, provided they could be sure that they would not benefit from treatment available in hospital. Barriers for non-conveyance included difficulties arranging care particularly out-of-hours, limited available patient information and service emphasis on emergency care. Ambulance interviewees fulfilled an important role in the admission of EoL patients to hospital, frequently having to decide whether to leave a patient at home or to instigate transfer to hospital. Their difficulty in facilitating non-hospital care at the EoL challenges the negative view of near EoL hospital admissions as failures. Hospital provision was sought for dying patients in need of care which was inaccessible in the community.
DOI: 10.1177/0269216318779238
Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey
PALLIATIVE MEDICINE, 2018;32(5):960-968. Occupational therapists (OTs) understand and value their role in making it possible for people facing dying to participate as fully as they wish and are able in their everyday lives – from managing the basic fundamentals of personal hygiene to digging the flowerbeds or continuing to work – but do not feel that this role is used to its full potential. The ability of OTs to use the full range of their skills and expertise to support patients to live well while dying appears to be significantly influenced by their colleagues’ and employing organisations’ expectations and understanding of the scope of their role. This needs to be addressed in partnership between OTs, patients and carers, the MDT and PC service providers. A continual reframing of professional roles must occur within the context of ever-changing local and global resources and constraints. This will require targeted occupational therapy research to evaluate clinical practice which can inform clinical care.
DOI: 10.1177/0269216318758928
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