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

Objective: To 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. Design: A 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 participants: 761 relatives of deceased residents in 241 LTCFs in Belgium, England, Finland, Italy, the Netherlands, and Poland. Methods: The 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. Results: The 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 onsite 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%). Conclusion: The 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. Implications: Training in end-of-life communication to physicians providing care for LTCF residents is recommended

Palliative care implementation in long-term care facilities : European Association for Palliative Care white paper

Objectives: The number of older people dying in long-term care facilities (LTCFs) is increasing globally, but care quality may be variable. A framework was developed drawing on empirical research findings from the Palliative Care for Older People (PACE) study and a scoping review of literature on the implementation of palliative care interventions in LTCFs. The PACE study mapped palliative care in LTCFs in Europe, evaluated quality of end-of-life care and quality of dying in a cross-sectional study of deceased residents of LTCFs in 6 countries, and undertook a cluster-randomized control trial that evaluated the impact of the PACE Steps to Success intervention in 7 countries. Working with the European Association for Palliative Care, a white paper was written that outlined recommendations for the implementation of interventions to improve palliative and end-of-life care for all older adults with serious illness, regardless of diagnosis, living in LTCFs. The goal of the article is to present these key domains and recommendations. Design: Transparent expert consultation. Setting: International experts in LTCFs. Participants: Eighteen (of 20 invited) international experts from 15 countries participated in a 1-day face-to-face Transparent Expert Consultation (TEC) workshop in Bern, Switzerland, and 21 (of 28 invited) completed a follow-up online survey. Methods: The TEC study used (1) a face-to-face workshop to discuss a scoping review and initial recommendations and (2) an online survey. Results: Thirty recommendations about implementing palliative care for older people in LTCFs were refined during the TEC workshop and, of these, 20 were selected following the survey. These 20 recommendations cover domains at micro (within organizations), meso (across organizations), and macro (at national or regional) levels addressed in 3 phases: establishing conditions for action, embedding in everyday practice, and sustaining ongoing change. Conclusions and implications: We developed a framework of 20 recommendations to guide implementation of improvements in palliative care in LTCFs. (C) 2020 AMDA - The Society for Post-Acute and Long-Term Care Medicine

Shared Decision Making in Clinical Practice: Experiences and Needs of Patients with Limited Health Literacy

Shared Decision Making (SDM), currently considered a preferred model for making decisions in healthcare, requires that patients have the knowledge and skills to actively participate in the consultation and decision-making process. Patients with limited health literacy (LHL) often fail to do so. To gain insight into the experiences, needs and support for LHL-patients concerning SDM in clinical practice, five focus groups were held with 26 patients with LHL. A focus group discussion guide was developed based on 4-steps SDM models. Data was coded using thematic content analyses. LHL patients participating in this study had little experience with SDM in practice, but do prefer it. Important barriers for this are healthcare provider-related (involving patients too little in decision-making, using medical jargon), patient-related (feeling insecure to play a role in decision-making, inability to understand their diagnosis or information about treatment options), patient-provider interaction-related (relationship of trust) or system-related (too little consultation time). For SDM to take place more often, a shared responsibility between patients and healthcare providers is required. We recommend expanding the SDM models, by adding a step zero (patients understand their diagnosis) and a fifth step (reviewing the decision), to improve the process for LHL patients

Perceptions of healthcare professional about the “PACE Steps to Success” palliative care program for long-term care ::a qualitative study in Switzerland

Aim: This study aimed to examine the healthcare professionals' perceptions after implementing the “PACE Steps to Success” program in the French-speaking part of Switzerland. Design: A qualitative descriptive study. Methods: Thematic analysis of semi-structured face-to-face and group interviews with health professionals, PACE coordinators, and managers purposely invited in the four long-term home facilities that had previously participated in the PACE cluster randomized clinical trial intervention group. Results: The PACE program implementation has improved communication with residents regarding end-of-life issues and helped identify patients' needs. The introduction of codified tools can complete internal tools and support decision-making. In addition, the training has promoted inter-professional collaboration, particularly in the case of care assistants, by defining each profession's specific responsibilities in providing care for older adults

How should realism and hope be combined in physician-patient communication at the end of life? An online focus-group study among participants with and without a Muslim background

Objective: Maintaining false hope may result in prolonged curative aggressive treatments until the very last stage of life. In this study, we sought to explore how people think that realistic and hopeful information should best be combined in physician-patient communications at the end of life. Method: During a period of 15 days, participants of five online focus groups (OFGs) could log in onto a closed discussion site and offer responses to several topics. A variety of people participated: Patients, older people, relatives, and healthcare professionals with and without a Muslim background. Participants with a Muslim background constituted a separate group, because previous research indicated that they might have distinct views on good end-of-life care and communication. Transcripts were analyzed following the principles of thematic analysis. Results: Participants from all focus groups preferred that physicians provide realistic information in an empathic way, stating that the patient would never be left on his own and that withholding curative treatment was not equal to withholding care, explicitly asking how the patient could be helped during the time remaining, and involving other professionals in the care process and communications. As such, physicians could support patients' transition from hope for a cure to hope for a good death. Muslims specified the way they wished to receive realistic information: First from a relative, and not by using the term incurable illness, but rather by informing the patient that they had no remaining curative treatments available. Significance of results: Realism and hope are not necessarily mutually exclusive and can be combined when providing realistic information in a delicate and culturally sensitive way. This study provides suggestions on how physicians can do so. Communication skills training as well as anchoring knowledge of the diversity of cultural and religious views into physicians' education could improve end-of-life communication

Relating cause of death with place of care and healthcare costs in the last year of life for patients who died from cancer, chronic obstructive pulmonary disease, heart failure and dementia: A descriptive study using registry data

Background: The four main diagnostic groups for palliative care provision are cancer, chronic obstructive pulmonary disease, heart failure and dementia. But comparisons of costs and care in the last year of life are mainly directed at cancer versus non-cancer or within cancer patients. Aim: Our aim is to compare the care and expenditures in their last year of life for Dutch patients with cancer, chronic obstructive pulmonary disease, heart failure or dementia. Design: Data from insurance company Achmea (2009-2010) were linked to information on long-term care at home or in an institution, the National Hospital Registration and Causes of Death-Registry from Statistics Netherlands. For patients who died of cancer (n = 8658), chronic obstructive pulmonary disease (n = 1637), heart failure (n = 1505) or dementia (n = 3586), frequencies and means were calculated, Lorenz curves were drawn up and logistic regression was used to compare patients with high versus low expenditures. Results: For decedents with cancer and chronic obstructive pulmonary disease, the highest costs were for hospital admissions. For decedents with heart failure, the highest costs were for the care home (last 360 days) and hospital admissions (last 30 days). For decedents with dementia, the highest costs were for the nursing home. Conclusion: Patients with dementia had the highest expenditures due to nursing home care. The number of dementia patients will double by the year 2030, resulting in even higher economic burdens than presently. Policy regarding patients with chronic conditions should be informed by research on expenditures within the context of preferences and needs of patients and carers

How do treatment aims in the last phase of life relate to hospitalizations and hospital mortality? A mortality follow-back study of Dutch patients with five types of cancer

Contains fulltext : 183877.pdf (Publisher’s version ) (Open Access

Continuity of GP care after the last hospitalization for patients who died from cancer, chronic obstructive pulmonary disease or heart failure: a retrospective cohort study using administrative data

BACKGROUND: Discharge from hospital to home can be a stressful experience for patients and carers. Contact with the GP is important to ensure continuity of care. OBJECTIVES: To investigate timing of contact with the GP and locum after the last hospitalization in the last year of life and to investigate patient and care characteristics related to contact with the GP within 2 days after discharge. METHODS: Health insurance data were combined with data from Statistics Netherlands on patients who mainly received care at home in the last 4 months of life. Patients who died from cancer (n = 3014), chronic obstructive pulmonary disease (COPD, n = 195) or heart failure (n = 171) were compared. RESULTS: First contact after hospital discharge was within 2 days for 51.7% of patients and within a week for 77.8% of patients. Patients who died from COPD or heart failure had contact less often than patients with cancer. Characteristics related to having contact within 2 days after discharge were older age, cause of death cancer, home death, timing of last hospitalization closer to death and contact with a locum in the week after discharge. CONCLUSION: Results may indicate that the GP is likely to visit patients with more care needs sooner. This would be in accordance with the finding that contact with the GP was more likely after a hospitalization closer to death and that contact within 2 days was related to contact with a locum within a week after discharge. Proactive care is necessary. This is a joint responsibility of GPs and medical specialists

Changes in the personal dignity of nursing home residents: a longitudinal qualitative interview study

Most nursing home residents spend the remainder of their life, until death, within a nursing home. As preserving dignity is an important aim of the care given here, insight into the way residents experience their dignity throughout their entire admission period is valuable. To investigate if and how nursing home residents' personal dignity changes over the course of time, and what contributes to this. A longitudinal qualitative study. Multiple in-depth interviews, with an interval of six months, were carried out with 22 purposively sampled nursing home residents of the general medical wards of four nursing homes in The Netherlands. Transcripts were analyzed following the principles of thematic analysis. From admission onwards, some residents experienced an improved sense of dignity, while others experienced a downward trend, a fluctuating one or no change at all. Two mechanisms were especially important for a nursing home resident to maintain or regain personal dignity: the feeling that one is in control of his life and the feeling that one is regarded as a worthwhile person. The acquirement of both feelings could be supported by 1) finding a way to cope with one's situation; 2) getting acquainted with the new living structures in the nursing home and therefore feeling more at ease; 3) physical improvement (with or without an electric wheelchair); 4) being socially involved with nursing home staff, other residents and relatives; and 5) being amongst disabled others and therefore less prone to exposures of disrespect from the outer world. Although the direction in which a resident's personal dignity develops is also dependent on one's character and coping capacities, nursing home staff can contribute to dignity by creating optimal conditions to help a nursing home resident recover feelings of control and of being regarded as a worthwhile perso