Perception of the Quality of Communication With Physicians Among Relatives of Dying Residents of Long-term Care Facilities in 6 European Countries: PACE Cross-Sectional Study

ObjectiveTo examine how relatives evaluate the quality of communication with the treating physician of a dying resident in long-term care facilities (LTCFs) and to assess its differences between countries.DesignA cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. Relatives of residents who died during the previous 3 months were sent a questionnaire.Settings and participants761 relatives of deceased residents in 241 LTCFs in Belgium, England, Finland, Italy, the Netherlands, and Poland.MethodsThe Family Perception of Physician-Family Communication (FPPFC) scale (ratings from 0 to 3, where 3 means the highest quality) was used to retrospectively assess how the quality of end-of-life communication with treating physicians was perceived by relatives. We applied multilevel linear and logistic regression models to assess differences between countries and LTCF types.ResultsThe FPPFC score was the lowest in Finland (1.4 ± 0.8) and the highest in Italy (2.2 ± 0.7). In LTCFs served by general practitioners, the FPPFC score differed between countries, but did not in LTCFs with on-site physicians. Most relatives reported that they were well informed about a resident's general condition (from 50.8% in Finland to 90.6% in Italy) and felt listened to (from 53.1% in Finland to 84.9% in Italy) and understood by the physician (from 56.7% in Finland to 85.8% in Italy). In most countries, relatives assessed the worst communication as being about the resident's wishes for medical treatment at the end of life, with the lowest rate of satisfied relatives in Finland (37.6%).ConclusionThe relatives' perception of the quality of end-of-life communication with physicians differs between countries. However, in all countries, physicians' communication needs to be improved, especially regarding resident's wishes for medical care at the end of life.ImplicationsTraining in end-of-life communication to physicians providing care for LTCF residents is recommended.     

End-of-life Models and Emergency Department Care

Many people die in emergency departments (EDs) across the United States from sudden illnesses or injuries, an exacerbation of a chronic disease, or a terminal illness. Frequently, patients and families come to the ED seeking lifesaving or life-prolonging treatment. In addition, the ED is a place of transition-patients usually are transferred to an inpatient unit, transferred to another hospital, or discharged home. Rarely are patients supposed to remain in the ED. Currently, there is an increasing amount of literature related to end-of-life care. However, these end-of-life care models are based on chronic disease trajectories and have difficulty accommodating sudden-death trajectories common in the ED. There is very little information about end-of-life care in the ED. This article explores ED culture and characteristics, and examines the applicability of current end-of-life care models.     

Approaches for end-of-life care in the field of gynecologic oncology: an exploratory study

We sought to explore the Society of Gynecologic Oncologists (SGO) members' opinions and decisions about end-of-life issues and incurable conditions. A survey was mailed to members of the SGO. Their responses were recorded on a Likert scale and entered into a database. The survey explored opinions, experiences, and decisions in managing terminally ill gynecologic oncology patients. Of 900 surveys, 327 were returned (response rate, 36%). Seventy-three percent were men, 89% were white, and 72% were of Christian denomination. Respondents believed that 97% of patients who are dying realize that they are dying but stated only 40% of these patients initiate conversations about end-of-life issues. In contrast, 92% of respondents stated that they initiate end-of-life discussions with patients. Ninety-two percent of respondents thought that the patients should be allowed to make end-of-life choices independently after the facts are given to them. However, 44% thought that it is important to influence the way information is presented, and 54% believe that the gynecologic oncologist (GO) controls the outcome of end-of-life discussions. Although the physicians' sex, race, religion, and age did not correlate with their treatment decisions, religion did correlate with less fear of death (P = 0.011) and less discomfort when talking with patients about death (P = 0.005). Fifty-four percent of respondents believed that the GO controls the outcome of end-of-life discussions, and 40% believe that their actions prolong the process of dying. Expanding our understanding of what motivates GOs to recommend continued treatment over palliation is important for preserving informed patient-motivated end-of-life decisions.     

Assessment and Psychological Treatment of Depression in Older Adults with Terminal or Life-Threatening Illness

Depression decreases the quality of life and hinders efforts to palliate symptoms of adults with terminal or life-threatening illness. Nevertheless, depression often may go undetected and untreated in palliative care and hospice settings due to a number of factors, including the overlap of depressive symptoms with those of serious medical illness and concern that frail elderly patients cannot tolerate psychotherapy or antidepressant treatment. In this paper we review the available research regarding assessment and treatment of depression in older adults with terminal or life-threatening illness, focusing on patients who are seen in palliative care, cancer treatment, or hospice settings. Although the prevalence of depression is relatively high in these settings in mixed-age adult samples, studies focused exclusively on older adults are rare and there appear to be no randomized controlled trials of psychotherapy conducted to date that specifically address their needs. There are, however, promising psychological approaches featured in case reports and pilot studies that are consistent with empirically supported therapies for the general treatment of depression in older adults. Based on these preliminary findings and reports, we offer tentative recommendations for the assessment and treatment of depression in terminally ill older adults. We conclude that controlled research on psychotherapy for late-life depression is both feasible and urgently needed in palliative care, cancer care, and hospice settings.     

Difficulties in navigating the intersection of generalist and specialist palliative care services: A cross-sectional study of bereaved family's experiences of care at home in New Zealand

A generalist–specialist model of palliative care is well established as a framework for the provision of community care in resource-rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross-sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3 months of life. A modified version of the Views of Informal Carers—Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi-square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty-six questionnaires were returned (response rate = 21%). Seventy per cent of people (n = 579) spent some time at home in the last 3 months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2 days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision-making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that “generalists” are willing and able to play a key role in palliative care provision needs to be further challenged.     

Formal and Informal Costs of Care for People With Dementia Who Experience a Transition to Hospital at the End of Life: A Secondary Data Analysis

ObjectivesTo explore formal and informal care costs in the last 3 months of life for people with dementia, and to evaluate the association between transitions to hospital and usual place of care with costs.DesignCross-sectional study using pooled data from 3 mortality follow-back surveys.Setting and ParticipantsPeople who died with dementia.MethodsThe Client Service Receipt Inventory survey was used to derive formal (health, social) and informal care costs in the last 3 months of life. Generalized linear models were used to explore the association between transitions to hospital and usual place of care with formal and informal care costs.ResultsA total of 146 people who died with dementia were included. The mean age was 88.1 years (SD 6.0), and 98 (67.1%) were female. The usual place of care was care home for 85 (58.2%). Sixty-five individuals (44.5%) died in a care home, and 85 (58.2%) experienced a transition to hospital in the last 3 months. The mean total costs of care in the last 3 months of life were £31,224.7 (SD 23,536.6). People with a transition to hospital had higher total costs (£33,239.2, 95% CI 28,301.8-39,037.8) than people without transition (£21,522.0, 95% CI 17,784.0-26,045.8), mainly explained by hospital costs. People whose usual place of care was care homes had lower total costs (£23,801.3, 95% CI 20,172.0-28,083.6) compared to home (£34,331.4, 95% CI 27,824.7-42,359.5), mainly explained by lower informal care costs.Conclusions and ImplicationsTotal care costs are high among people dying with dementia, and informal care costs represent an important component of end-of-life care costs. Transitions to hospital have a large impact on total costs; preventing these transitions might reduce costs from the health care perspective, but not from patients' and families' perspectives. Access to care homes could help reduce transitions to hospital as well as reduce formal and informal care costs.     

Clinician Confidence About Conversations at the End of Life Is Strengthened Using the Four Habits Approach

Communicating about cancer is not easy. At a time when patients are asked to make complicated choices about treatment and to be responsible for most of their own care, communication problems are consistently presented as a barrier to satisfactory medical treatment. This article identifies problems in communication and describes interventions the multidisciplinary team can use to improve the exchange of information and feelings among patients, families, and health care providers. The specific focuses are communication at the time of diagnosis and during progressive disease and the challenges and difficulties of communicating about pain, sexual functioning, and financial problems throughout the cancer experience.     

Physician Training:

The authors surveyed former medical resident physicians who participated in long-term home health care program services during training. Forty-four physicians who had served in a home visit program were surveyed after an average of ten years since completion of medical training (range: 1 to 18 years). The majority of the 43 respondents (56%) make house calls in their current medical practices and most of the 36 now involved in medical house staff training (83%) incorporate their home care experience into their teaching today. Working at a home health care program can have educational value for medical residents, influence later practice, and result in personal and professional rewards.