A dignified last phase of life for patients with a migration background: A qualitative study.

BACKGROUND: Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries. AIM: To gain insight into (1) what patients - and their relatives - with a Turkish, Moroccan or Surinamese background, living in the Netherlands, in their last phase of life find important aspects of dignity, and (2) how care professionals can preserve and strengthen the dignity of these patients. DESIGN: Qualitative thematic analysis of semi-structured interviews. PARTICIPANTS: A total of 23 patients and 21 relatives with a Turkish, Moroccan or Surinamese background were interviewed. RESULTS: For respondents dignity encompassed surrender to God's or Allah's will and meaningful relationships with others, rather than preserving autonomy. Surrender to God or Allah meant accepting the illness, the situation and performing religious practice. A meaningful relationship meant being assisted or cared for by family members and maintaining a social role. Professionals could preserve dignity by showing respect and attention; guaranteeing physical integrity, hygiene and self-direction; and indirect communication about diagnoses and prognoses. CONCLUSIONS: Religion and appropriate involvement of family members are important aspects of dignity in the last phase of life, in addition to autonomy and independency. Care professionals need to take these factors into account in order to provide person-centred care.

What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer.

BACKGROUND: In the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements that patients and relatives consider essential for high-quality palliative care, and whether these essentials are present in the actual care they receive. METHODS: Qualitative semi-structured interviews were conducted with 13 patients with advanced cancer and 14 relatives. The participants discussed their experiences with the care and support they received from the GP and community nurses, and their views on met and unmet needs. Interview data were analysed according to the principles of thematic analysis. RESULTS: Patients as well as relatives considered it important that their GP and community nursing staff are medically proficient, available, person-focused and proactive. Also, proper information transfer between care professionals and clear procedures when asking for certain resources or services were considered essential for good palliative care at home. Most interviewees indicated that these essential elements were generally present in the care they received. However, the requirements of 'proper information transfer between professionals' and 'clear and rapid procedures' were mentioned as more difficult to meet in actual practice. Patients and relatives also emphasized that an alert and assertive attitude on their own part was vital in ensuring they received the care they need. They expressed worries about other people who are less vigilant regarding the care they receive, or who have no family to support them in this. CONCLUSIONS: Medical proficiency, availability, a focus on the person, proper information transfer between professionals, clear procedures and proactivity on the part of GPs and community nursing staff are considered essential for good palliative care at home. Improvements are particularly warranted with regard to collaboration and information transfer between professionals, and current bureaucratic procedures. It is important for care professionals to ensure that the identified essential elements for high-quality palliative care at home are met, particularly for patients and relatives who are not so alert and assertive.

How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: developing and testing a self-assessment instrument.

BACKGROUND: European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients. The aim of this study was to develop a self-assessment instrument to help palliative care researchers assess and find ways to improve their projects' diversity responsiveness in light of the aging migrant population, and determine whether in addition to older migrants other groups should be included in the instrument's focus. METHODS: After developing a concept instrument based on the standards for equity in healthcare for migrants and other vulnerable groups, literature review and interviews with palliative care researchers, we conducted a Delphi study to establish the content of the self-assessment instrument and used think aloud methods in a study involving seven projects for usability testing of the self-assessment instrument. RESULTS: A Delphi panel of 22 experts responded to a questionnaire consisting of 3 items concerning the target group and 30 items on diversity responsiveness measures. Using an a priori set consensus rate of 75% to include items in the self-assessment instrument, experts reached consensus on 25 out of 30 items on diversity responsiveness measures. Findings furthermore indicate that underserved groups in palliative care other than migrant patients should be included in the instrument's focus. This was stressed by both the experts involved in the Delphi study and the researchers engaged in usability testing. Usability testing additionally provided insights into learnability, error-rate, satisfaction and applicability of the instrument, which were used to revise the self-assessment instrument. CONCLUSIONS: The final self-assessment instrument includes a list of 23 diversity responsiveness measures to be taken at varying stages of a project, and targets all groups at risk of being underrepresented. This instrument can be used in palliative care research to assess diversity responsiveness of projects and instigate action for improvement.

Physician Visits and Recognition of Residents' Terminal Phase in Long-Term Care Facilities: Findings From the PACE Cross-Sectional Study in 6 EU Countries.

OBJECTIVES: To describe the relation between physician visits and physicians' recognition of a resident's terminal phase in long-term care facilities (LTCFs) in Belgium, England, Finland, Italy, the Netherlands, and Poland. DESIGN: In each country, a cross-sectional study was conducted across representative samples of LTCFs. Participating LTCFs reported all deaths of residents in the previous 3 months, and structured questionnaires were sent to several proxy respondents including the treating physician. SETTING AND PARTICIPANTS: 1094 residents in 239 LTCFs, about whom 505 physicians returned the questionnaire. MEASURES: Number of physician visits, the resident's main treatment goal, whether physicians recognized the resident's terminal phase and expected the resident's death, and resident and physician characteristics. RESULTS: The number of physician visits to residents varied widely between countries, ranging from a median of 15 visits in the last 3 months of life in Poland to 5 in England, and from 4 visits in the last week of life in the Netherlands to 1 in England. Among all countries, physicians from Poland and Italy were least inclined to recognize that the resident was in the terminal phase (63.0% in Poland compared to 80.3% in the Netherlands), and residents in these countries had palliation as main treatment goal the least (31.8% in Italy compared to 92.6% in the Netherlands). Overall however, there were positive associations between the number of physician visits and the recognition of the resident's terminal phase and between the number of physician visits and the resident having palliation as main treatment goal in the last week of life. CONCLUSIONS AND IMPLICATIONS: This study suggests that LTCFs should be encouraged to work collaboratively with physicians to involve them as much as possible in caring for their residents. Joint working will facilitate the recognition of a resident's terminal phase and the timely provision of palliative care.