Recruiting end-of-life cancer patients in the Netherlands for a study on suffering and euthanasia requests

Abstract

Background. In the Netherlands, GPs performed euthanasia or physician-assisted suicide (EAS) in 1 of 10 end-of-life cancer patients in their care. Of all explicit requests for EAS directed at GPs, 44% resulted in EAS. However, the suffering of patients who do and do not request EAS has never been studied. An important barrier for such research is the low prevalence of end-of-life cancer patients per practice (on average two/year). We studied whether it is possible to recruit end-of-life cancer patients, following-up for requests for EAS (if any), in an interview study in general practice, whether selection occurred and which were the threats and opportunities to recruitment. Our target was to recruit at least 50 patients.Methods. Characteristics of all eligible patients were monitored. Results. One in every three eligible patients were recruited by 44 GPs in a 3-year inclusion period, resulting in 64 patients in the interview study with follow-up until death. The prevalence of explicit requests for EAS was higher (27%; P = 0.026) in the interview sample, and the presence of a depressed mood according to the GP was lower (5%; P = 0.013) than in the sample with eligible but not participating patients. Conclusions. Recruitment of slightly more than the minimal target number of end-of-life cancer patients in this study in general practice was realized. Monitoring of all eligible patients permitted to evaluate the selection which occurred. Recruitment through GPs who were direct professional colleagues of one of the researchers was a positive recruitment factor.

Symptoms, unbearability and the nature of suffering in terminal cancer patients dying at home: a prospective primary care study

“…The study was realized despite relevant barriers to research of end-of-live cancer patients in primary care (low prevalence of the studied patients, geographical dispersed setting of patients, physicians and researchers, difficulty of recruitment of end-of-life cancer populations for research) [25]. The 51% recruitment proportion of requested patients is comparable to recruitment proportions in secondary care studies investigating end-of-life cancer patients [10].…”

“…The study protocol was approved by the Medical Ethics Committee at the VU University Medical Center. The recruitment process is described in detail elsewhere [25]. …”

Unbearable suffering and requests for euthanasia prospectively studied in end-of-life cancer patients in primary care

“…Written informed consent was obtained from participants. The recruitment process is described in detail elsewhere [ 24 ].…”

The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care

“…Depressed mood according to the GP was less prevalent in the interview sample than in the declining sample (5% versus 23%) [25]. The interviewers were the study coordinator (a physiotherapist) and a GP (CDMR); both were trained in interview techniques.…”

“…Patients were clearly informed that they were free to decline from further participation at any time. The recruitment process is described in detail elsewhere [25]. …”