2018; Volume 19, No 11, November
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.
Frailty trajectories to identify end of life: A longitudinal population-based study
BMC MEDICINE | Online – 21 September 2018 – This longitudinal population-based study demonstrates that it is possible to use a frailty index calculated within electronic healthcare records to identify people who are at a higher risk of dying within 1 year. This has potential application in health services to support clinicians in identifying older adults dying with frailty who may have been overlooked by traditional approaches and to help ensure appropriate care is offered.
End-of-life care in China
The experience of caring for patients at the end-of-life stage in non-palliative care settings: A qualitative study
BMC PALLIATIVE CARE | Online – 17 October 2018 – Three themes emerged from interviews [with health care providers from eight health care institutions based in Shanghai]: 1) Definition of the end-of-life (EoL) stage [this is mainly defined based on a change in treatment]; 2) Health care at the EoL stage [Most patients spent their last weeks in tertiary/secondary hospitals, transferring from one location to another and receiving disease- and symptom-focused treatment. Family-dominated decision-making was common when discussing treatment options. Nurses instinctively provided extra care attention to patients, but nursing care is still task-oriented.]; and, 3) Challenges, difficulties, and the future [from the interviews, it was found that pressure from families was the main challenge faced by health care providers]. Three urgent tasks before EoL care can become widely available in the future were identified from the interviews, including educating the public on death, extending government support, and creating a better health care environment.
Meaningful connections in dementia end-of-life care in long-term care homes
BMC PSYCHIATRY | Online – 24 September 2018 – The findings of this study suggest opportunities to support end-of-life (EoL) care for persons with dementia in long-term care (LTC) homes. It is important to acknowledge and support the value of relationships, the time it takes to establish relationships, and the grief experienced by staff who provide care. Health care aides’ intimate knowledge of persons with dementia should be incorporated in interprofessional pain management interventions. Residents with dementia are not immune to grief and loss when other residents die. Further research about their needs is required. Existing rituals within LTC homes may need to be enhanced. Families want and need information about the dementia illness trajectory and EoL. Education and training for staff to be confident in providing this information and answering families’ questions is needed.
End-of-life care: Beliefs, attitudes, and experiences of Iranian physicians
INDIAN JOURNAL OF PALLIATIVE CARE, 2018;24(4):431-435. There are numbers of important implications of this study. First, the study demonstrates that the familiarity of Iranian physicians' with end-of-life (EoL) care is low and in contrast with the frequent contact with mentioned patients. Second, there is not any kind of structured or organized system to deliver services for EoL patients. Third, in Iran, there is a noticeable absence of EoL education, in both medical school curriculums, and in continuous medical education programs. The participation rate in this study was 38.3%, which was lower than that of similar international studies in Hungary (54%), U.S. (48%), and Pakistan (63.6%). Most of the Iranian physicians (72%) in the current study claim that they did not have any knowledge about hospice care... However, there is a high level of interest shared among physicians in the U.S., Hungary, Iran, and Pakistan to participate in continuing medical education to learn more about hospice care. These findings are consistent with previous studies that indicate physicians' common interest in continuing medical education for EoL care. In this study, 72% of EoL patients received medical care in the hospital and 23% at home, while only 27% of Iranian physicians mentioned that the preferred place of providing terminal care is the hospital.
Palliative care in women's cancer care: Global challenges and advances
INTERNATIONAL JOURNAL OF GYNECOLOGY & OBSTETRICS, 2018;143(S3):153-158. Women’s cancer rates are increasing in low‐ and middle‐income countries, with presentations that are often far advanced requiring intense symptom management, thus advancing the urgent need to address palliative care (PC). Most resource settings have some options available to assist women with advanced gynecologic cancer, and a combination of leveraging these and expanding on emerging models for PC could lessen suffering and improve care for women with gynecologic cancers globally. Providing PC for women with cancer is constrained by resources (human and physical), lack of equipment, lack of access, and policy absence or barriers. There is important work to be done in advocating for appropriate infrastructure development and legislation to assure that these options are available to women and their families. Access to adequate opioid and other pain relief options for cancer‐related pain is a particular concern given that availability, cost, and legislative prohibitions create barriers that cause suffering for patients and grief for their families who are unable to address their suffering. All of these require ongoing advocacy for continual advances to improve access and infrastructure for PC.
How much end‐of‐life care is of low value
INTERNAL MEDICINE JOURNAL, 2018;48(10):1173-1174. A significant proportion of healthcare expenditure is spent on patients in their last year of life. In the U.S., such patients accounted for 25% of the Medicare budget in 2009, with more recent data from 2009 to 2011 from nine developed countries showing the share of total healthcare spend incurred ranging from 8.5% in the U.S. to 11.2% in Taiwan. In Australia, hospital care for the last year of life for those aged 65 years and over constitutes around 9% of all inpatient costs. A rising concern is how much of this relatively expensive end‐of‐life (EoL) care is of low value, that is, ineffective or even harmful. In one study, 12% of admissions to three Australian tertiary hospitals involving patients at the EoL involved the administration of futile care, as defined by audit criteria and expert consensus. A systematic review of 38 studies found that on average one in three older patients in the last 6 months of life received interventions in hospital that were very unlikely to confer benefit. These included dialysis, radiotherapy, transfusions, antibiotics, life support treatments and unnecessary and often invasive investigations. The same review found non‐beneficial intensive care unit admission involved one in 10 patients... In most cases, beneficent intent, death denial, mass marketing of modern healthcare technologies, which raises expectation of miracles, and a host of cognitive biases constitute the drivers of “do everything” care. However, although the notion of low‐value care at EoL is easy to accept, the problem comes when some assert that avoiding such care could save money which could then be redirected to care of higher value. This raises the disquieting topic of rationing care and assuming clinicians can accurately predict who will live or die, regardless of the care received.
Diagnosis-related differences in the quality of end-of-life care: A comparison between cancer and non-cancer patients
PLOS ONE | Online – 25 September 2018 – Cancer, chronic heart failure (CHF) and chronic obstructive pulmonary disease (COPD) in the advanced stages have similar symptom burdens and survival rates. Despite these similarities, the majority of the attention directed to improving the quality of end-of-life care (EoLC) has focused on cancer. Although awareness of the quality and aggressiveness of EoLC in CHF and COPD patients has increased recently, research on these issues is still limited. This study highlights the presence of significant differences in the quality of EoLC received in the last month of life by COPD and CHF compared with cancer patients. These findings suggest the presence of potential diagnosis-sensitive determinants of the quality of EoLC. Further studies that take into account patients’ preferences of care and disease severity are needed to better elucidate the extent and the avoidability of these differences in the quality of EoLC provided to different diagnosis groups.
Perspectives on using decision-making nudges in physician-patient communications
PLOS ONE | Online – 19 September 2018 – Patients engaging in shared decision making must weigh the likelihood of positive and negative outcomes and deal with uncertainty and negative emotions in the situations where desirable options might not be available. The use of “nudges,” or communication techniques that influence patients’ choices in a predictable direction, may assist patients in making complex decisions. However, nudging patients may be perceived as inappropriate influence on patients’ choices. The authors sought to determine whether key stakeholders, physicians, and laypersons without clinical training consider the use of nudges to be ethical and appropriate in medical decision making. 89 resident-physicians and 336...non-clinicians evaluated two hypothetical preference-sensitive situations, in which a patient with advanced cancer chooses between chemotherapy and hospice care. The authors varied the following: 1) Whether or not the patient’s decision was influenced by a mistaken judgment (i.e., decision-making bias); and, 2) Whether or not the physician used a nudge. Each participant reported the extent to which the communication was ethical, appropriate, and desirable. Both physicians and non-clinicians considered using nudges more positively than not using them, regardless of an initial decision-making bias in patients’ considerations. Decomposing this effect...physicians viewed the nudge that endorsed hospice care more favorably than the nudge that endorsed chemotherapy, while non-clinicians viewed the nudge that endorsed chemotherapy more favorably than the nudge that endorsed hospice care. The authors discuss implications and propose exploring further physicians’ and patients’ differences in the perception of nudges; the differences may suggest limitations for using nudges in medical decisions.
Reflection: Palliative care: Taking the long view
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