Interviews on end-of-life care with older people: reflections on six european studies.

Qualitative research provides important insights into the experiences and perspectives of older people on end-of-life issues, but such research is methodologically and ethically complex. We offer a set of reflections from six end-of-life care studies conducted with older people in four European countries: Belgium, Germany, the Netherlands, and the United Kingdom. The reflection process was informed by four full-day meetings between the authors and referral to sources including the study interview guides, summary "pen portraits" about key issues encountered in the interviews, and key sections of the interview transcripts.

Analysis of the construct of dignity and content validity of the patient dignity inventory.

Background: Maintaining dignity, the quality of being worthy of esteem or respect, is considered as a goal of palliative care. The aim of this study was to analyse the construct of personal dignity and to assess the content validity of the Patient Dignity Inventory (PDI) in people with an advance directive in the Netherlands.

Methods: Data were collected within the framework of an advance directives cohort study.

Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study.

Objective: To examine health professionals' experiences of and attitudes towards the provision of chemotherapy to patients with end stage cancer.

Design: Purposive, qualitative design based on in-depth interviews.

Setting: Oncology departments at university hospitals and general hospitals in the Netherlands.

Palliative treatment alternatives and euthanasia consultations: a qualitative interview study.

Context: There is much debate about euthanasia within the context of palliative care. The six criteria of careful practice for lawful euthanasia in The Netherlands aim to safeguard the euthanasia practice against abuse and a disregard of palliative treatment alternatives. Those criteria need to be evaluated by the treating physician as well as an independent euthanasia consultant.

Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study.

Objective: To examine health professionals' experiences of and attitudes towards the provision of chemotherapy to patients with end stage cancer.

Design: Purposive, qualitative design based on in-depth interviews. Setting Oncology departments at university hospitals and general hospitals in the Netherlands.

The development of an instrument to measure factors that influence self-perceived dignity.

Background: Preserving dignity can be considered as a goal of palliative care. To provide dignity-conserving care, it is relevant to identify the factors that influence a patient's self-perceived dignity. This study aims to develop an instrument to measure factors affecting self-perceived dignity that has good content validity and is appropriate for use in practice.

Attitudes and experiences of Belgian physicians regarding euthanasia practice and the euthanasia law.

Context: Since the legalization of euthanasia, physicians in Belgium may, under certain conditions, administer life-ending drugs at the explicit request of a patient.

Objectives: To study the attitudes of Belgian physicians toward the use of life-ending drugs and euthanasia law, factors predicting attitudes, and factors predicting whether a physician has ever performed euthanasia.

Methods: In 2009, we sent a questionnaire to a representative sample of 3006 Belgian physicians who, because of their specialty, were likely to be involved in the care of the dying.

The labelling and reporting of euthanasia by Belgian physicians: a study of hypothetical cases.

Background: Belgium legalized euthanasia in 2002. Physicians must report each euthanasia case to the Federal Control and Evaluation Committee. This study examines which end-of-life decisions (ELDs) Belgian physicians label 'euthanasia', which ELDs they think should be reported and the physician characteristics associated with correct labelling of euthanasia cases, the awareness that they should be reported and the reporting of them.

The use of opioids at the end of life: the knowledge level of Dutch physicians as a potential barrier to effective pain management.

Background: Pain is still one of the most frequently occurring symptoms at the end of life, although it can be treated satisfactorily in most cases if the physician has adequate knowledge. In the Netherlands, almost 60% of the patients with non-acute illnesses die at home where end of life care is coordinated by the general practitioner (GP); about 30% die in hospitals (cared for by clinical specialists), and about 10% in nursing homes (cared for by elderly care physicians).The research question of this study is: what is the level of knowledge of Dutch physicians concerning pain management and the use of opioids at the end of life?

Methods: A written questionnaire was sent to a random sample of physicians of specialties most often involved in end of life care in the Netherlands.

Reporting of euthanasia in medical practice in Flanders, Belgium: cross sectional analysis of reported and unreported cases.

Objectives: To estimate the rate of reporting of euthanasia cases to the Federal Control and Evaluation Committee and to compare the characteristics of reported and unreported cases of euthanasia. Design Cross sectional analysis. Setting Flanders, Belgium.

The use of opioids at the end of life: knowledge level of pharmacists and cooperation with physicians.

Purpose: What is the level of knowledge of pharmacists concerning pain management and the use of opioids at the end of life, and how do they cooperate with physicians?

Methods: A written questionnaire was sent to a sample of community and hospital pharmacists in the Netherlands. The questionnaire was completed by 182 pharmacists (response rate 45%).

Results: Pharmacists were aware of the most basic knowledge about opioids.

[Advance euthanasia directives in dementia rarely carried out. Qualitative study in physicians and patients].

Objective: To study how advance euthanasia directives (AEDs) in dementia are viewed in practice in the Netherlands.

Design: Qualitative study.

Method: In-depth interviews on nine patients with the patients themselves and/or partners and their physicians.

Design of the Advance Directives Cohort: a study of end-of-life decision-making focusing on Advance Directives.

Background: ADs are documents in which one can state one's preferences concerning end-of-life care, aimed at making someone's wishes known in situations where he/she is not able to do so in another manner. There is still a lot unclear about ADs. We designed a study aimed at investigating the whole process from the formulating of an AD to its actual use at the end of life.

Advance directives in the Netherlands: an empirical contribution to the exploration of a cross-cultural perspective on advance directives.

Research Objective: This study focuses on ADs in the Netherlands and introduces a cross-cultural perspective by comparing it with other countries.

Methods: A questionnaire was sent to a panel comprising 1621 people representative of the Dutch population. The response was 86%.

Legal euthanasia in Belgium: characteristics of all reported euthanasia cases.

Objectives: To study the reported medical practice of euthanasia in Belgium since implementation of the euthanasia law.

Research Design: Analysis of the anonymous database of all euthanasia cases reported to the Federal Control and Evaluation Committee Euthanasia.

Subjects: All euthanasia cases reported by physicians for review between implementation of the euthanasia law on September 22nd, 2002 and December 31, 2007 (n = 1917).

The medical practice of euthanasia in Belgium and The Netherlands: legal notification, control and evaluation procedures.

Objectives: To describe and compare current legal procedures for notifying, controlling and evaluating (NCE-procedures) euthanasia in Belgium and the Netherlands, and to discuss the implications for a safe and controllable euthanasia practice.

Methods: We systematically studied and compared official documents relating to the Belgian and the Dutch NCE-procedures for euthanasia.

Results: In both countries, physicians are required to notify their cases to a review Committee, stimulating them to safeguard the quality of their euthanasia practice and to make societal control over the practice of euthanasia possible.

Trends in the use of opioids at the end of life and the expected effects on hastening death.

The aim of our study was to describe trends in opioid use and perceptions of having hastened the end of life of a patient. In 2005, a questionnaire was sent to 6860 physicians in The Netherlands who had attended a death. The response rate was 78%.