OBJECTIVES: The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS), and euthanasia, and the influence of illness experience on these attitudes.
METHODS: Adolescent cancer survivors were interviewed with a structured questionnaire using hypothetical case descriptions. The results were compared with a study of 1769 adolescents without experience of chronic illness.
RESULTS: Eighty-three adolescents, 11 to 18 years of age, were interviewed. In terminal situations, 70% to 90% found requests for NTDs acceptable, 84% requests for APS, and 57% to 64% requests for euthanasia. Requests for end-of-life decisions were less acceptable in nonterminal situations, where 28% found requests for NTDs acceptable, 39% to 47% requests for APS, and 11% to 21% requests for euthanasia. Frequently cited reasons for holding back physicians from administering a lethal drug to a child were the child not being well informed about his or her condition (92%) and the parents' opinion not being asked (92%). Compared with adolescents without experience with chronic illness, cancer survivors were more accepting toward requests for NTDs and APS in terminal situations.
CONCLUSIONS: Adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. They value autonomous decision-making, without excluding parents from the process. The experience of living through a life-threatening illness can alter adolescents' attitudes toward requests for NTDs and APS.
- withholding treatment
- patient participation
- mental competency
- chronic illness
Medical end-of-life decisions (ELDs) with possible life-shortening effects precede ∼40% of deaths, not only in adults but also (and this is less clearly recognized) in minors (<18 years of age).1–5 The legal status of these ELDs generally depends on the category to which they belong, that is, (1) withholding or withdrawing of life-sustaining treatments (nontreatment decisions [NTDs]), (2) intensified alleviation of pain and symptoms (APS), or (3) provision, prescription, or administration of lethal drugs by a physician with the explicit intention of ending the patient's life. The latter category is subdivided into (1) euthanasia (the physician administers lethal drugs at the patient's explicit request), (2) physician-assisted suicide (the physician prescribes or provides lethal drugs administered by the patient himself or herself), and (3) administration of lethal drugs by the physician without an explicit patient request.
For minors, several factors complicate an ethically and legally justifiable decision-making process. According to the Belgian Law on Patient's Rights (2002), a minor's legal rights as a patient are exercised by the parents or guardians unless the minor is regarded as competent. Therefore, a minor may refuse treatment, even without parental consent, if he or she is judged to be sufficiently competent to make the medical decision. However, even if the minor is fully competent according to the Law on Patient's Rights, he or she may not choose euthanasia, because the Belgian Law on Euthanasia (2002) explicitly excludes persons <18 years of age.6 Because of this perceived inconsistency, the possibility of the inclusion of minors in the application of the Euthanasia Act is being heavily debated, both in politics and in wider society. This has resulted in several proposals for amendments to the law, some of which are under consideration.7–9
Other challenges in the decision-making process for ELDs for minors are specifically related to minor patients' decision-making competencies. The concept of competency is difficult to establish, however, for several reasons. Firstly, it is not clear who should assess the competency of a minor patient and how this might be done. Secondly, because children are developing physically and mentally, their level of competency is continually evolving, which makes unequivocal assessment more difficult. Finally, several factors may influence a child's normal competency, one of which is experience with severe or chronic illness.10–13
Despite the frequent occurrence of ELDs for minors, the current debates on NTDs and euthanasia, and the complexity of the decision-making process for ELDs, little is known about how minors themselves think about ELDs and how experience of illness influences their attitudes. Although attitudes toward ELDs have been studied extensively in adults,14–20 they have received less attention in minors. One study among students in Flemish secondary schools showed that adolescents find requests for ELDs, including euthanasia, acceptable in hypothetical cases under certain circumstances.21 This study addresses the following research questions among adolescents who survived cancer: (1) whether and under which conditions they find requests from their peers for ELDs (NTDs, intensified APS, and euthanasia) acceptable, (2) in which circumstances they think a physician should hold back from administering a lethal drug to a minor patient, (3) whether they think a minor has the right to be informed about a terminal prognosis and whether they would want to be informed about a terminal prognosis themselves, and (4) whether illness experience changes an adolescent's attitudes toward ELDs (through comparison of the attitudes of adolescent cancer survivors with the attitudes of adolescents never diagnosed as having cancer).
Adolescent cancer survivors were contacted through the department of pediatric hemato-oncology of Ghent University Hospital in 2004. Participants were included in the study if they were between 11 and 18 years of age and had been without treatment for ≥2 years. The adolescent's parents were sent a letter explaining the research objectives and details and were asked to give informed consent for their child to participate in the study. One week after the informed consent form was sent, the parents were contacted by psychologists from the department. Adolescents for whom parents provided informed consent were asked to consent to participate in the study and, if they agreed, were interviewed at their home or at another place of their choice. Parents and adolescents who did not want to take part in the study were asked about the reasons why they preferred not to participate.
Interviews were administered by 3 trained interviewers and were structured with a questionnaire with closed-ended questions, on the basis of a previous study in secondary schools.21 The questionnaire consisted of 3 parts, measuring the acceptability of requests for ELDs, circumstances in which a physician should not administer a lethal drug to a child, and attitudes toward information about terminal prognoses.
In the first part of the questionnaire, hypothetical case descriptions concerning adolescents with an explicit wish to die (see Appendix) were presented to the participants. Cases T1 and T2 concerned terminal situations, whereas cases NT1 and NT2 concerned nonterminal situations. Questions were asked about the acceptability of requests for different types of ELDs, that is, the withdrawing or withholding of life-sustaining treatments (NTDs), with possible life-shortening effects (“Can the patient ask to stop the treatments? This will shorten the patient's life.”); APS with possible life-shortening effects (“Can the patient ask to increase pain medication? This might shorten the patient's life.”); and the administration of a lethal drug with the explicit intention of ending the patient's life (euthanasia) (“Can the patient ask the physician for a lethal injection that will end the patient's life?”). To prevent misconceptions about value-laden words such as “euthanasia,” descriptions of what the physician would do were used.
In the second part of the questionnaire, hypothetical examples again were used. Participants were asked to indicate whether a physician can administer a lethal drug in following situations: the minor patient does not want a lethal injection; the patient is not well informed about his or her illness; the patient wants to die because of the burden he or she causes to his or her parents; the patient's parents do not agree with the child's wish to die; the parents' opinion is not asked; and the patient wants to die because of illness-induced sadness.
In the third part of the questionnaire, 2 questions were used to identify attitudes toward being informed of a terminal prognosis. The first question asked whether the girl in case 3 (Appendix) should have the right to be informed about her terminal prognosis, and the second asked whether participants would like to be informed themselves if faced with a similar situation. During the interviews, additional information was obtained on the personal and clinical characteristics of the participants, including current age, age at diagnosis, gender, diagnosis, and type and duration of treatment. The study protocol was reviewed and approved by the ethical review board of Ghent University Hospital.
For questions for which formulation and answer categories were comparable, data from the present study were merged with data from a previous study with adolescents without previous experience with cancer, which is described in detail elsewhere.21 Comparable questions were related to the hypothetical case descriptions for cases T1 and NT1 and to the questions on the right and willingness to be informed about a terminal prognosis.
The first 3 research questions were answered by using standard descriptive statistics with 95% confidence intervals. Data from both studies were compared with χ2 statistics, with answers on attitude items dichotomized into 2 categories (yes versus no/do not know). The level of significance was set at P < .05. All analyses were performed with SPSS 15.0 (SPSS Inc, Chicago, IL).
Parents of 198 adolescents were approached for their consent for the participation of their child in the study. Parents of 1 adolescent could not be reached because they were abroad during the study period. Parents of 179 adolescents gave their informed consent. Of these 179 adolescents, 83 consented to participate in the study (total response rate: 83 of 197 adolescents [42%]) and were interviewed. The main reasons indicated by the adolescents for not participating in the study were the subject of the study being too confrontational (indicated by 56 adolescents) and lack of interest (indicated by 12 adolescents).
Of the 83 participating adolescents, 52% were male and 51% were ≤14 years of age (Table 1). Leukemia was the most frequent diagnosis (39%), followed by malignancies of the central nervous system (16%). Participants had been in treatment for ≥2 years in a large majority (90%) of cases. Treatment often was a combination of treatment modalities and included chemotherapy for 78% of participants and surgery for 42%. Radiotherapy and bone marrow transplantation were less common.
In response to the 2 hypothetical cases describing terminal situations, 90% (case T1) and 70% (case T2) of participants found requests for NTDs acceptable (Table 2). The level of acceptance of requests for NTDs was substantially higher for the terminal case descriptions than for the nonterminal case descriptions (28% for case NT2). A request for APS was found acceptable by 84% of participants when a terminal situation was concerned, which was significantly higher than acceptance of APS requests in the nonterminal examples (47% for case NT1 and 39% for case NT2). Requests for euthanasia were found to be acceptable in terminal situations by 64% (case T1) and 57% (case NT2) of participants, which was significantly higher than in the nonterminal situations (21% for case NT1 and 11% for case NT2). In case T1, a request for euthanasia was significantly more acceptable for participants ≥15 of age (78%) than for younger participants (50%) (data not shown).
Participants identified different circumstances that should hold a physician back from administering a lethal drug to a child (Table 3). None of the participants thought that a physician should administer a lethal drug to a child when the child does not want it, whereas 92% thought it should not be allowed when the child is not well informed about his or her condition, when the child wants to die because of the burden he or she causes to the parents, and when the parents' opinion is not asked by the physician. Eighty-nine percent of participants thought that a physician should not administer a lethal drug to a child when he or she wants to die because of illness-induced sadness. Participants significantly less frequently (49%) thought that a physician should not administer a lethal drug to a child when the parents do not agree with their child's wish to die. All except 2 participants (96%) agreed that a terminally ill minor should have the right to be informed about the terminality of his or her condition; 86% also indicated that they would want to be informed themselves if they were ever faced with a similar situation.
When the results of the present study were compared with those of a previous study in secondary schools,21 distributions according to age and gender did not differ significantly between the 2 studies (data not shown). When a terminal situation was concerned, acceptance of requests for NTDs and APS was significantly higher among the cancer survivors than among participants without cancer diagnoses (Table 4). Levels of acceptance of requests for APS did not differ significantly between the 2 studies when a nonterminal situation was concerned. Participants from the 2 studies did not differ in their levels of acceptance of euthanasia requests, in both terminal and nonterminal situations. Adolescent cancer survivors agreed more than did participants from the study in secondary schools with the rights of minor patients to be informed about terminal prognoses.
We investigated adolescent cancer survivors' attitudes toward ELDs. A large majority of participants thought that minor patients should be allowed to request a NTD or intensified APS in a terminal situation. Participants were less inclined to find requests for NTDs and APS acceptable when a nonterminal situation was concerned. Although a request for euthanasia by a minor patient was generally less acceptable than requests for NTDs or APS, more than one half of participants found a euthanasia request acceptable in a terminal situation. Almost all participants identified different safeguarding circumstances for the administration of a lethal drug, that is, the adolescent should agree with the administration of a lethal drug, the adolescent should be well informed about his or her condition, and the parents' opinion should be asked. The burden caused to parents and illness-induced sadness were found not to be sufficient reasons to permit the administration of a lethal drug, whereas parental agreement with the adolescent's wish for euthanasia was not a necessity for all participants. Compared with adolescents without a cancer diagnosis, adolescent cancer survivors were more accepting toward requests for NTDs and APS in terminal situations.
Patient-reported outcomes are relatively few in pediatric oncology.22 By focusing on attitudes of minors with a cancer diagnosis, the present study can help to fill this gap. This study is the first, to our knowledge, to investigate attitudes toward ELDs among adolescents who have recovered from cancer and thus have had the experience of a life-threatening illness. Because the questionnaire was similar to that used in a previous study in secondary schools, it was possible to compare the present results with the attitudes of adolescents without a cancer diagnosis. The study also has some shortcomings. Firstly, the response rate was fairly low. Nonresponse was partly at the parent level and partly caused by adolescents not wanting to be confronted with their period of illness. It is possible that this caused some bias in the results. However, because it is vital to obtain informed consent at both the parent and adolescent levels, potential bias could not be prevented when studies on these sensitive topics were conducted. Secondly, for comparisons with the previous study in secondary schools, the possibility that some of the participants from the first study also had received a cancer diagnosis in the past cannot be entirely excluded. However, because this was probably a very small proportion, it is highly unlikely that it substantially influenced the results of the comparative analyses. Finally, some participants were very young at the time of diagnosis and treatment and others were already nearing adulthood, which caused heterogeneity in the degree of illness experience.
The first major finding, that attitudes toward ELDs varied strongly with case characteristics (terminal versus nonterminal), was in accordance with the previous study.21 Apparently adolescent cancer survivors also find ELDs more acceptable in situations where treatment is no longer possible and death is imminent than in nonterminal situations. This is not surprising, because adolescents have been shown to be very resilient and perseverant even in life-threatening situations, which makes them less likely to accept life-shortening options when death is not imminent.23,24
The second important finding was that adolescent cancer survivors were more accepting of requests for NTDs and APS in terminal situations than were adolescents without cancer diagnoses. This finding suggests some effect of illness experience on attitudes toward ELDs. We hypothesize that cancer survivors, having lived through the pain and symptoms caused by cancer, are better able to empathize with the cancer patients in the terminal case descriptions, which leads to less resistance to a request for an ELD that may shorten life. It might have been more difficult for them to identify and to empathize with the severely burned patient in the nonterminal case description. A second hypothesis is possible, on the basis of the specific developmental issues related to adolescence. The psychological literature has identified individuation (identity formation and the development of autonomy) as one of the most important developmental tasks adolescents face, and this is often challenged by the feelings of invincibility that are prominent in adolescence.25,26 As research shows, living or having lived with cancer can influence these developmental processes and outcomes.27,28 It can be hypothesized that adolescent cancer survivors detach more easily from these feelings of invincibility than do adolescents who have not lived through a cancer episode, which causes them to accept life-limiting options (under certain circumstances) more easily. More-specific research is needed to explore further the psychodevelopmental processes of children who have survived cancer.
Illness experience did not significantly affect attitudes toward requests for euthanasia. This finding suggests that attitudes toward euthanasia, as opposed to other ELDs, are influenced more by stable personal attitudes regarding, for example, religion,14 autonomy, and self-determination than they are by experience with chronic illness.
A third striking finding was that almost all adolescent cancer survivors participating in the study identified ≥1 circumstance in which a physician should hold back from administering a lethal drug to a patient. Involvement of parents in the decision-making process was found to be very important to the participants, although parental agreement with the child's wish for euthanasia was not required for 40% of cases. Also, nearly all cancer survivors agreed that children should have a right to be informed about a terminal prognosis. These results were all in line with the previous study and showed that, although adolescents value a certain amount of autonomous decision-making, they do not take these end-of-life issues lightly and they want their parents to be involved.21 The results also are in accord with a study of US adolescent cancer patients, who stressed the relational aspect of the end-of-life decision-making process and valued parental involvement.13
The results of the present study show that adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. Not only are they accepting toward requests for certain ELDs, especially when terminal situations are concerned, but they also value a certain degree of autonomous decision-making, albeit without excluding parents from the process. The findings further suggest that the experience of living through a life-threatening illness can lead adolescents to become more accepting toward requests for NTDs and APS when a terminal situation is concerned. In attempts to involve adolescents and their parents adequately in medical decision-making, age, gender, and type of education are factors that should be taken into account by physicians and caregivers.21 As the present study shows, the adolescent's own illness experience also should be taken into consideration.
APPENDIX: DESCRIPTION OF HYPOTHETICAL CASES
Acceptability of Requests for ELDs by Minors
The patient is 14 years of age and has bone cancer. The patient experiences a lot of pain, and the treatment is very painful and burdensome. Everyone, including the patient, knows that the patient has only a limited time to live. The patient cannot tolerate the pain any longer and wants to die.
The patient is 14 years of age, has cancer, and has become dependent on other people. The patient needs to undergo different treatments and has no privacy. For example, the patient no longer can use the toilet alone; this causes a lot of fuss (eg, changing diapers and using bedpans). The patient knows that he does not have long to live, and he can no longer stand that he is deprived of all feeling of honor. The patient wants to die.
The patient is 14 years of age and is severely burned over the whole of her face and body. She has a lot of pain and, because of the burns, she cannot move well. The patient does not want to continue living like that, although she has a normal life expectancy.
The patient is 14 years of age and has had a severe bicycle accident. The patient needs to undergo difficult and painful surgery to stay alive and does not want to continue this way.
Information About Terminal Prognosis
The patient is 14 years of age and has a disease that will not allow her to live much longer. Everyone around her knows that she will die soon. The patient has asked repeatedly whether she will die, but no one will tell her.
This article was written in the context of the Monitoring Quality of End-of-Life Care Study, a collaboration between Vrije Universiteit Brussel, Ghent University, Antwerp University, the Scientific Institute of Public Health (Belgium), and VU Medical Centre Amsterdam. This study was supported by a grant from the Institute for the Promotion of Innovation by Science and Technology in Flanders (Strategic Basic Research grant 050158).
We thank the adolescents for their participation, Eric Broekaert for his help in facilitating the study, and Jella Govaerts and Debbie Mannaerts for their help in collecting the data.
- Accepted June 29, 2009.
- Address correspondence to Geert Pousset, MA, Department of Medical Sociology, End-of-Life Care Research Group, Laarbeeklaan 103, 1090 Brussels, Belgium. E-mail:
Financial Disclosure: The authors have indicated they have no financial relationships relevant to this article to disclose.
What's Known on This Subject:
Adolescents find requests for ELDs by minors to be acceptable under certain circumstances. They also want to be informed about terminal prognoses. These attitudes vary strongly with situational (eg, terminal versus nonterminal) and personal (eg, age and gender) characteristics.
What This Study Adds:
Adolescent cancer survivors show considerable acceptance of requests for ELDs. Chronic illness experience alters their attitudes toward NTDs and intensified APS. These findings should be taken into account in attempts to involve adolescents adequately in end-of-life decision-making.
- ↵Vanlerberghe M, Van Nieuwkerke A. Bill to supplement the law of 28 May 2002 concerning euthanasia, with regard to minors [in Dutch]. S. 4-431/1 (2007)
- Detiège M. Bill to supplement the law of 28 May 2002 concerning euthanasia, with regard to minors [in Dutch]. 0611/001 (2007)
- ↵Jiroflée K, Baeke A, Detiège M. Bill to supplement the law of 28 May 2002 concerning euthanasia, with regard to minors [in Dutch]. 2553/001 (2006)
- ↵Hinds PS, Drew D, Oakes LL, et al. End-of-life care preferences of pediatric patients with cancer. J Clin Oncol.2005;23 (36):9146– 9154
- Cohen J, van Delden J, Mortier F, et al. Influence of physicians' life stances on attitudes to end-of-life decisions and actual end-of-life decision-making in six countries. J Med Ethics.2008;34 (4):247– 253
- ↵Hinds PS, Brandon J, Allen C, Hijiya N, Newsome R, Kane JR. Patient-reported outcomes in end-of-life research in pediatric oncology. J Pediatr Psychol.2007;32 (9):1079– 1088
- ↵Woodgate RL. A review of the literature on resilience in the adolescent with cancer: part II. J Pediatr Oncol Nurs.1999;16 (2):78– 89
- ↵Woodgate RL. Conceptual understanding of resilience in the adolescent with cancer: part I. J Pediatr Oncol Nurs. 1999;16 (1):35– 43
- Copyright © 2009 by the American Academy of Pediatrics