critical thinking

RELATIVES’ PERSPECTIVE ON THE TERMINALLY ILL PATIENTS WHO DIED AFTER EUTHANASIA OR PHYSICIAN-ASSISTED SUICIDE: A RETROSPECTIVE

CROSS-SECTIONAL INTERVIEW STUDY IN THE NETHERLANDS

JEAN-JACQUES GEORGES, BREGJE D. ONWUTEAKA- PHILIPSEN, MARTIEN T. MULLER, and GERRIT VAN DER WAL

Department of Public and Occupational Health, Institute for Research in Extramural Medicine, VU Medical Center, Amsterdam, The Netherlands

AGNES VAN DER HEIDE and PAUL J. VAN DER MAAS

Department of Public Health, Erasmus MC, University Medical Center Rotterdam, The Netherlands

This study used retrospective interviews with 87 relatives to describe the experi- ences of patients who died by euthanasia or physician-assisted suicide (EAS) in the Netherlands. Most of the patients suffered from cancer (85%). The relatives were most often a partner (63%) or a child (28%) of the patient. Before explicitly requesting EAS most patients (79%) had spoken about their wishes concerning medical end-of-life decisions to be made at a later date. Hopeless suf- fering, loss of dignity, and no prospect of recovery were the most prevalent reasons for explicitly requesting EAS. According to the relative, in 92% of patients EAS had contributed favourably to the quality of the end of life, mainly by preventing or ending suffering.

Euthanasia, defined as the administration of drugs with the explicit intention to end a patient’s life at his or her request, and physician- assisted suicide, defined as the prescription or supply of drugs with the explicit intention to enable a patient to end his or her own life, are legal in the Netherlands, provided that the requirements for prudent practice are met.

Received 1 November 2005; accepted 25 May 2006. We thank the relatives of the patients for their participation in the study. Address correspondence to Jean-Jacques Georges, Department of Public and Occu-

pational Health, Institute for Research in Extramural Medicine, VU Medical Center, Amsterdam, The Netherlands. E-mail: [email protected]

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Death Studies, 31: 1–15, 2007 Copyright # Taylor & Francis Group, LLC ISSN: 0748-1187 print/1091-7683 online DOI: 10.1080/07481180600985041

Several studies have described the experiences and attitudes of physicians with regard to euthanasia and assisted suicide (EAS) (Emanuel, Fairclough, & Emanuel, 2000; Haverkate, 2001; Materstvedt & Kaasa, 2002; Sullivan, Hedberg, & Hopkins, 2001). The relationship between euthanasia and the bereavement of relatives of patients who died after EAS has also been described (Swarte, van der Lee, van der Bom, van den Bout, & Heintz, 2003). However, although the clinical and demographic character- istics of patients requesting euthanasia have been investigated (Meier, Emmons, Litke, Wallenstein, & Morrison, 2003), their experiences and life circumstances have not been studied (Emanuel, 2002).

The objectives of the study were to gain insight into the back- ground and history of requests for EAS and into the influence and meaning of EAS on the end of a patient’s life. Therefore, in the third nationwide study concerning medical end-of-life decisions in the Netherlands, the relatives of patients who died after EAS were interviewed (Onwuteaka-Philipsen et al., 2003).

Methods

Design

During one of the sub-studies of the third nationwide study con- cerning medical end-of-life decisions in the Netherlands, a random sample of physicians who had reported cases of EAS to the Regional Review Committee (RRC) in the year 2001 (n ¼ 2,054 cases), stratified according to specialty and the district in which the case was reported, were interviewed. The study design ensured absolute anonymity for all participants.

Population and Procedure

All 167 physicians who were interviewed (74 general practitioners, 65 medical specialists, 28 nursing home physicians) were asked to approach the patient’s most involved relative in order to inform them about the study and to invite them to participate. A member of the research team then contacted the relatives who were willing to participate about the study, and an appointment was made for an interview.

2 J.-J. Georges et al.

In the case that a relative of the patient could not be approached it was because the relative would not be able to partici- pate in an interview, for example, due to an illness, emotionally too demanding (n ¼ 16), the interviewer did not ask the physician to approach the relative (n ¼ 16), or the relative could not be found (n ¼ 16). In the remaining cases it was not clear why a relative had not been approached (n ¼ 22).

Finally, of the 97 relatives who had been approached, 87 (response rate 90%) agreed to participate; 3 refused because of lack of time, and 7 explained that it could be too emotional to talk about the patient. Relatives were interviewed between October 2001 and January 2002, and the mean period between the death of the patient and the interview with the relative was 17.6 (þ=�4.45) months, range 6–32.

Measurements Instruments

The interview schedule mainly focused on the patient’s illness, the reasons for the patient’s wishes and requests for EAS, the end of the patient’s life and the dying process. The interview schedule was specifically developed for this study and pre-tested with 4 rela- tives of patients who died after EAS some years earlier. The inter- view questions were formulated in a way that the answers could be written down easily during the interview. The interviews, which had an average length of two hours, were held in the home of the relative, and the interviewers were specifically trained for the purpose of the study.

Data Analysis

Descriptive statistical analysis was performed on the characteristics of the patients and their relatives. As earlier studies have shown that the gender and age of the patient are related to the type of end-of-life decisions (van der Maas et al., 1996; van der Heide et al., 2003), the reasons for requesting EAS and the concerns of the patients were analyzed for sub-groups of the total population, according to gender and age. The median value, 68 years of age, was used as the cut-off point. Sub-group differences concerning the reasons for requests and concerns were assessed by non- parametric tests, and differences concerning the average number

Hastened Death in the Netherlands 3

of concerns by a t test. Differences in the results, according to the gender of the relative and his=her relation to the patient, were also assessed.

Results

Characteristics of Participants

The relatives participating to the study had a mean age of 58 (þ=�13.4) years old, 41% were male, 63% were the partner of the patient (Table 1). For 91% of the relatives it was the first time that they had been closely involved in a request for EAS. The mean age of patients was 66 (þ=�14.1) years old, 55% were male, 85% of them suffered from cancer and 15% of an other illness, mostly a neurological disease (e.g., amyotrophic lateral sclerosis, spinal cord injury). Almost all of the patients (97%) died after euthanasia, but 3% died after physician-assisted suicide. Slightly more than half of the patients died at home (52%), 30% died in a hospital, 16% died in a nursing home, and 2% died in a hospice. In 48% of the cases the attending physician was a general practitioner, in 36% a clinical specialist, and in 16% a nursing home physician.

Talking about Medical End-of-Life Decisions at a Later Date

Most patients (79%) had expressed their wish concerning medical end-of-life decisions before they became terminally ill (median 1 year before death, range 1 week–20 years). The wishes almost always concerned euthanasia (84%), had mostly been expressed in writing (59%) and were mainly directed at circumstances of unbearable suffering and heavy dependence on others to perform daily life activities (67%). Most of the patients had first talked to their partner (69%) or one of their children (38%) about consider- ing EAS as an option at a later date. In a minority of cases the physician was involved (39%) (Table 2).

Requesting Euthanasia or Assisted Suicide Explicitly

Most explicit requests for EAS were made within 3 months of the patient’s death (Table 3). A minority of patients (10%) found it difficult to explicitly request a physician to perform EAS.

4 J.-J. Georges et al.

TABLE 1 Characteristics of Relatives and Patients (n ¼ 87)

n %

Relatives

Age Mean: 58 (�13.4) Gender

Male 36 41

Female 51 59

Relation to patient

Partner 55 63

Child 24 28

Other relative 4 5

Friend 2 2

Other 2 2

Education a

Primary school 20 23

Secondary school 36 42

High school = university 29 33

Other 1 1

Health insurancea

Sick fund 47 54

Private insurance 40 46

Religious beliefs a

Yes 40 46

Patients

Age Mean: 66 (�14.1) Gender

Male 48 55

Female 39 45

Diagnosis

Cancer 73 85

Other 14 15

Reason of death

Euthanasia 84 97

Physician-assisted suicide 3 3

Place of deathb

Home 45 52

Hospital 26 30

Nursing Home 14 16

Hospice 2 2

aAccording to the National Bureau of Statistics in the Netherlands, CBS Voor-

burg=Heerlen (retrieved on 27-10-2005), these variables are distributed as follow for the

Dutch population in the year 2001: with concern to education 25% of the people between

25–64 years old have a higher school or university degree and 30%, same age category have

a low level of education (primary school). With concern to health assurance, 66% have sick

fund and 34% private insurance, and with concern to religious belief 59%, have one. bIn the Netherlands of all deaths (n ¼ 142,000, year 2003) about 33% occurred at the hos-

pital, about 25% at home, and about 20% at a nursing home. Of the patients, between 20 and

79 years old, who died of cancer in the year 2003 about 35% died at the hospital, about 50% at

home, about 8% at a nursing home, and 7% at another place. CBS, webmagazine, 21 juni 2004:

http:==www.cbs.nl=nl-nl=menu=themas=dossiers=vergrijzing=publicaties=artikelen=archief=

2004=2004-1483-wm.htm

Hastened Death in the Netherlands 5

TABLE 2 Circumstances of Talking about Euthanasia or Physician Assisted Suicide (EAS) at a Later Date (n ¼ 87)

n %

Patients who had expressed a wish concerning medical end-of- life decisions before becoming terminally ill

69 79

Way the wishes were expressed In writing 41 59 Only verbally 28 41

Object of the wishes�

EAS 58 84 Other medical end-of-life decisions 10 15

Circumstances the wishes focused ona

Unbearable and=or meaningless suffering 31 45 Heavily dependent for daily life activities 15 22 Life without dignity 6 9 Other or not specified 20 29

Persons to whom patients talk the first time about considering EAS:

a 87

Partner 60 69 Children 32 38 Other relatives 11 13 Physicians 33 39 Other 6 7

aMore than one answer possible. �1 missing value.

TABLE 3 Circumstances of the First Explicit Request (n ¼ 87)

n %

Time of first explicit request <1 week before death 25 29 1 week–1 month before death 28 33 1 month–3 months before death 19 22 3 months–1 year before death 11 13 >1 year before death 3 3

Experience of making the request Did not find it difficult to make request to the physician 78 90 Found it difficult to make request to the physician 9 10

Experience of physician’s reaction Satisfied with physician’s reaction to the request 64 74 Disappointed about physician’s reaction to the request 14 16 Neutral about of physician’s reaction 9 10

6 J.-J. Georges et al.

According to their relatives, most patients (74%) were satisfied about the way in which the physician handled their request because they felt that the physician had insight. However, 16% of the patients were disappointed, and 10% were undecided because of the physician’s ambivalent attitude to their request.

Table 4 presents patients’ concerns and patients’ reasons for requesting EAS. The most widely expressed concerns were about loss of dignity (60%), ADL-dependency (47%), and pain (42%). Women were more often concerned about pain than men (z ¼�2.229; p ¼ 0.026), about confusion (z ¼�2.080; p ¼ 0.038) and about the dying process (z ¼�1,954; p ¼ 0.051). Patients under 68 years of age were more concerned about missing an important event (e.g., the wedding of a child or the birth of a grandchild; z ¼�2.125; p ¼ 0.034), while patients over 68 years of age were more concerned about admission to a hospital (z ¼�2.655; p ¼ 0.008). The partners more often than the children reported that the patient was concerned about missing an impor- tant event (z ¼�2.156; p ¼ 0.031).

The patients had a mean of 4 (þ=�2.2) concerns, but men (M ¼ 3.44, SD ¼þ=�1.7) had significantly fewer concerns than women (4.77 SDþ=�2.46) (t ¼�2,919; p ¼ 0.004). No differences were found with regard to age. Hopeless suffering, loss of dignity, and no prospect of recovery were the most frequently mentioned, and also the most important reasons for requesting EAS. Men more often than women requested EAS because of fear of suffo- cation (z ¼�1.957; p ¼ 0.043). This was not related to suffering from cancer of the respiratory tract, which was more prevalent in men. Women more frequently than men requested EAS because they wanted to be able to say good-bye to their loved ones con- sciously (z ¼�2.259; p ¼ 0.037). There were no differences with regard to age.

Partners more often than children reported that meaningless suffering was a reason for the patient to request EAS (z ¼�1.953; p ¼ 0.051), and female proxies more often than male proxies reported fear of suffocation (z ¼�2,202; p ¼ 0.028).

EAS, the End of Life and the Dying Process

Relatives reported that EAS had clearly contributed to the quality of the end of life of the patient (92%), that EAS had contributed to

Hastened Death in the Netherlands 7

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9

some degree to the quality of the end of life of the patient (7%), and one relative could not judge. Relatives who made some com- ments (n ¼ 49) emphasized that EAS contributed to the quality of the end of the patient’s life because, by shortening life, further suf- fering could be avoided (37%); because the patient knew that his=her wish concerning the end of life would be respected (29%); because dignity in dying would be preserved (18%); and because unbearable suffering would be alleviated (16%). Death had occurred at the right time according to most relatives (77%). However, some of them considered that EAS had been performed too late in the course of the patient’s illness, therefore causing more pain and suffering (23%). According to relatives, all the patients were ready to die (100%), most of them had said goodbye before dying (97%) and had died peacefully (93%).

Discussion

The results of this cross-sectional study indicate that the majority of patients who died after EAS had expressed a wish concerning medical end-of-life decisions before they became terminally ill. According to their surviving relatives, patients were, above all, concerned about loss of dignity, ADL-dependency, pain, and being a burden. Loss of dignity and hopeless suffering were the most important reasons for requesting EAS. According to the rela- tives, all the patients were ready to die, and almost all the patients had said goodbye to their loved ones and had died peacefully. EAS mainly contributed to the quality of the end of the patient’s life by preventing or ending their suffering.

Earlier studies have described the importance of relatives in relation to medical end-of-life decisions (Francke & Willems, 2000; Rabow, Hauser, & Adams, 2004). Most patients first talked about their wishes concerning the end of life with a relative, which indicates the intimate character of this issue, and only later with their physician. However, because physicians in the Netherlands need to take time to meet the requirements of prudent practice before granting a request and to cope with the patient’s request (Haverkate et al., 2001; Jansen-van der Weide, Onwuteaka- Philipsen, & van der Wal, 2005; Mitchell, 2004), it is important that both the physician and the patient get insight in the point of view of each other earlier on in the illness process.

10 J.-J. Georges et al.

The data show that the patients’ explicit request for EAS gen- erally developed over a longer period, first talking to close relatives about their wishes concerning medical end-of-life decisions and describing circumstances with which they would not like to be con- fronted. This mostly happened before their illness had progressed to the terminal stage. Requesting EAS explicitly generally occurred relatively late in the illness process.

Even if the request had been considered for a long time, as indicated by the high number of patients who had expressed their wishes concerning EAS in writing for an extended period before death, the patients seemed to strive to carry on as long as possible before requesting EAS explicitly. It is known that only about one third of queries about EAS at a later time develop into an explicit request for EAS (Onwuteaka-Philipsen et al., 2003) and that requests for EAS are related to advancing disease (Jones et al., 2003).

Earlier studies have reported that patients who explicitly request EAS have a more drastic deterioration in their clinical situ- ation and symptoms than patients who made no request (van der Wal et al., 2003; Georges, Onwuteaka-Philipsen, van der Heide, van der Wal, & van der Maas, 2006). Comparing our data with ear- lier studies among cancer patients dying without EAS suggests that patients who died after EAS had more concerns (Georges et al., 2006), were more frequently ready to die, and had more frequently said good-bye to their loved ones and more frequently died peace- fully (Georges et al., 2005).

Loss of dignity was among the most important reasons why patients made a request for EAS and it was their most important concern. It is known that proxy reports on psychosocial problems of patients might be ambiguous (McPherson & Addington-Hall, 2003), therefore it is difficult to ascertain whether they were purely reporting on patient’s experience of dignity and were able to set aside their own view. However, psychosocial problems and factors related to loss of dignity have been described by physicians and by patients as well as an important reason for patients to request euthanasia (Back et al., 1996; Kelly et al., 2003; Mak & Elwyn, 2005; van der Wal et al., 2003). Dignity is a very personal feeling; it is probable that conditions such as being ADL-dependent, being a burden on others, and general weakness threaten a patient’s dig- nity more than previous ideas and expectations about the end of

Hastened Death in the Netherlands 11

life, and also determine the moment when an explicit request for EAS is made.

According to relatives in our study group, EAS mainly contri- butes to the quality of the end of the patients’ life because their wishes are respected and further suffering is prevented. It also appeared that knowing how one’s own wishes and requests for euthanasia will be treated generated feelings of trust and control, thus possibly contributing favorably to the quality of the end of the patient’s life.

Limitations

It is a limitation that only cases reported to the RRC were included in the study sample. However, differences with regard to patient characteristics between reported and unreported cases of EAS in the Netherlands are mainly related to procedural requirements for prudent practice (e.g., consultation of another doctor before proceeding) and not with substantive requirements (e.g., the unbearable and hopeless condition of the patient; van der Wal & van der Maas, 1996).

The reliability of the data could be affected by the retrospec- tive study design and by the fact that proxies were the only avail- able source of data. However the strength and weakness of studies based on proxy reports have largely been clarified (Higginson, Priest, & McCarthy, 1994; Hinton, 1996; Klinkenberg et al., 2003; McPherson & Addington-Hall, 2003). Furthermore, the rela- tives who participated in the present study were the most closely involved in the patient’s situation. However we have to be aware that their answers might be influenced by their personal point of view and experiences (e.g., when judging that euthanasia had con- tributed to the quality of the patient’s end-of-life).

Furthermore, it is a limitation that eligible study participants first had to be approached by the attending physicians, which might have resulted in an overrepresentation of unproblematic cases. However, this could be the case in 38=70 relatives who were not approached because of subjective reasons (e.g., relative was thought to be too emotional, not able to participate, or unknown). In other cases (32=70), as the reasons to not approach a relative were more related to the study procedure (e.g., interviewer forgot to ask the physician to approach a relative or the relative could not

12 J.-J. Georges et al.

be found anymore), it is less probable that selection was related to the case being problematic.

The use of structured questions may also have limited the scope of the answers of the participants. However, participants were asked regularly during the interview to talk freely or to make any comments related to their experiences or those of the patients. The results of the present study might be developed further by in future study research including data about a comparison group of terminally patients who did not die after EAS. Even with these lim- itations, however, this study contributes useful details to our under- standing of the perceived meaning and impact of requests for hastened death at the end of life.

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