Cancer Patients' Attitudes Towards Euthanasia and Physician-Assisted Suicide The influence of question wording and patients' own

definitions on responses
Lynne Parkinson
Senior Research Fellow, Centre for Research and Education in Ageing The University of Newcastle, Australia

Katherine Rainbird
Health Research Consultant. Baldivis, Western Australia

lan Kerridge
Associate Professor of Bioethics and Director, Centre for Values, Ethics and the Law in Medicine, University of Sydney

Staff Haematologist/BMT Physician, Westmead Hospital, Sydney

Gregory Carter
Director C-L Psychiatry, Newcastle Mater Hospital Conjoint Senior Lecturer, Faculty of Health, University of Newcastle

John Cavenagh
Senior Staff Specialist, Division of Palliative Care, Newcastle Mater Hospital

John McPhee
Conjoint Senior Lecturer, School of Medical Practice and Population Health, The University of Newcastle

Peter Ravenscroft
Professor of Palliative Care/Chairperson, Division of Palliative Care, Newcastle Mater Hospital

Abstract Objectives: The aims of this study were to: (1) investigate patients' views on euthanasia and physician-assisted suicide (PAS), and (2) examine the impact of question wording and patients' own definitions on their responses. Design: Crosssectional survey of consecutive patients with cancen Setting: Newcastle (Australia)Mater Hospital Outpatients Clinic. Participants: Patients over 18 years of age, attending the clinic for follow-up consultation or treatment by a medical oncologist, radiation oncologist or haematologist. Main Outcome Measures: Face-to-face patient interviews were conducted examining attitudes to euthanasia and PAS. Results: 236 patients with cancer (24% participation rate; 87O/o consent rate) were interviewed. Though the majority of participants supported the idea of euthanasia, patient views varied significantly according to question wording and their own understanding of the definition of euthanasia. Conclusions: Researchers need to be circumspect about framing and interpreting questions about support of 'euthanasia,, as the term can mean different things to different people, and response may depend upon the spec~cs of the question asked.

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Cancer Patients' Attitudes Towards Euthanasia and Physician-Assisted Suicide

Key W o r d s

Euthanasia; suicide, assisted; physicians; patients; attitude; neoplasms

Introduction

The e u t h a n a s i a debate is often viewed as a simple dichotomy, a conflict between an individual's right to die and palliative care. However, the results of international research suggest this view is overly simplistic, as while some polls indicate public support at greater than 50O/o (1), other data suggests that few terminally ill patients desire death (2), and that the interest of patients with cancer in euthanasia decreases as they get closer to death.(3) It appears, then, that a number of variables may influence patient attitudes to euthanasia, including: religiosity, lack of pain control, age, marital status, advanced stage of disease, depression or hopelessness, delirium, loss of control (feelings of helplessness), pre-existing psychopathology, prior suicide attempts, exhaustion, disease site, level of social support, social class, and fear of dependency.(4-6) While some significant research into the attitudes of health care professionals to active voluntary euthanasia (AVE) and physician-assisted suicide (PALS) has been conducted during the past few years (6-8), there has been limited research to date into the attitudes of patients, and with few exceptions (9), into the attitudes of patients with cancer or patients who are terminally i11.(4) In an effort to gauge the level of support for AVE and PALS, researchers have often relied upon studies of population attitudes, the attitudes of those who care for patients who are dying, the attitudes of health care providers (10-12), poorly constructed opinion polls in the mass media (8), orthe reports of family members or surrogates.(12) While interesting, these studies are ultimately unhelpful as research has consistently demonstrated that health care professionals and patientselected surro gates are po or p redicto rs o f patients' attitudes or preferences.(13,14) There are several reasons for the paucity of research into patient attitudes to AVE and PALS:the perceived ethical difficulties in dealing with seriously ill people, the challenge of asking questions in a 'value neutral' way, and the lack of a valid and reliable instrument for asking questions around these issues.(15) Some of the recent studies on attitudes towards euthanasia (6,8) have been criticised on the basis that the research questions and interpretation of data has reflected the philosophical beliefs of the r e -

searchers, rather than the attitudes of the subjects, particularly in regard to the definition of euthanasia and the moral equivalence of "killing" and "letting die" in medicine. (15) One way to both gain a measure of the effect of this type of bias, and to gauge the internal and external consistency of the measure, is to use several definitions of euthanasia, and to ask questions using several different wording approaches. The aims of the present study were therefore to: 1. Investigate patients' views on euthanasia and physician assisted suicide (PALS), and 2. Examine the impact of question wording and patients' own definitions on their responses.
Methods

Participants
All patients attending the Outpatients Clinic at the Mater Hospital in Newcastle, Australia during the recruitment periods (September 1998 for the pilot and June/July 1999 for the main study) were considered for eligibility. Patients were eligible for the study if they were over 18 years of age and were attending the clinic for follow-up consultation or treatment by a Medical Oncologist, Radiation Oncologist or Haematologist. Patients attending the clinic for the first time were not approached about the study.
M e a s u res

Mental competence
All participants were administered the Standardised MiniMental State Examination (SMMSE) (16,17), and those who obtained a score of less than 24 (16) were asked a shortened version of the questionnaire and their data excluded from analysis.

Demographics
Standard demographic information included patient age, gender, occupation, marital status, level of education and cultural background was collected.

Disease history
Patients were asked what type of cancer or disease they had, when they were first told about their illness, and any medical treatment they had received during the last month, and whether they considered their disease to be cured, not cured but controlled, or not responding to treatment.

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Disease stage
Details of patients' disease type and stage were obtained, with the patient's consent, from their medical specialist. Specialists provided details of the p a t i e n t ' s clinical diagnosis, TNM classification, stage grouping, disease status and intention of treatment.

Personal experience and preferences about terminal illness, death and dying
Patients were asked about their personal experience and preferences in relation to terminal illness, suicide, death and dying, and whether they had ever asked their doctor to end their life or provide assistance so that they could end it themselves.

were asked to give their completed recruitment slips to an interviewer located in the waiting area. (ii) Patients who responded in the affirmative on the recruitment slip were taken to a private room by an interviewer, where they were told the study 'asks patients about their attitudes to death, dying and euthanasia' and asked if they were still willing to hear the details. (iii) Patients who agreed at this stage were given a copy of the i n f o r m a t i o n letter about the study. The interviewer went through the letter with the patient and, if the patient agreed to participate, obtained written consent.

Interview
Participants were either interviewed at the clinic, if time allowed, or in their own homes. Interviews were conducted f a c e - t o - f a c e by clinically experienced, fully trained interview staff.

Attitudes towards euthanasia and PAS

Sixteen questions relating to euthanasia and PAS were asked. First, patients were asked what they understood by the term 'euthanasia' with responses recorded verbatim. They were then asked whether they supported the idea of euthanasia, when they felt euthanasia should be allowed, and what actions a doctor should be able to take if someone is terminally ill and no longer wishes to live. Patients were also asked about their views towards euthanasia and PAS using a variety of differently worded questions, some of which were obtained from past studies. Patients were asked whether the legislation in relation to euthanasia should be changed and whether they would vote to legalise euthanasia and/or PAS if a referendum was held in Australia. Having indicated whether they supported the idea of euthanasia or not, participants were then presented with several common reasons that may provide the basis for such beliefs, and asked if they agreed or not with each statement.
Procedure

Retest
In order to evaluate the reliability of the questions used to assess patients' attitudes to euthanasia, those patients who took part in the pilot study (the first 78 patients) were invited to complete the survey again within two weeks of initial administration.
Analyses

Recruitment
In accordance with the requirements of the relevant ethics committees, a 3-stage recruitment process was employed:

(i)

Eligible patients were given a recruitment slip by reception staff on their arrival at the clinic, which briefly informed patients that the study 'looks at some important issues around having an illness' and asked them to check a box if they would be willing to talk to someone about taking part in the study. Patients

Statistical analyses were conducted using SAS system for Windows version 6.12 (18) and StatXact 3 for Windows.(19) Frequencies and proportions were calculated for relevant demographic variables and questions related to patients' attitudes to euthanasia and PAS. Unweighted Kappa values and proportions of exact agreement were calculated to assess the test-retest reliability of ten of the questions pertaining to patients' attitudes to euthanasia.(20) Bias adjusted Kappa values were calculated (20) to examine the level of agreement between the different attitudinal questions. Kappa was used as an index of the level of agreement between the question asked and the reference question 'Do you agree with euthanasia.)' where a higher score indicates a greater level of agreement. Kappa can range from -1 to 1, with 1 equal to perfect agreement. In general, a Kappa value of up to O.2 indicates poor or slight agreement, 0.21-0.60 is fair to moderate, and 0.611.0 is substantial to perfect agreement.(20)

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Cancer Patients' Attitudes Towards Euthanasia and Physician-Assisted Suicide

A thematic analysis qualitative approach was used to e x a m i n e p a t i e n t s ' v e r b a t i m definitions of the term euthanasia.(21) Association of these themes with attitude to euthanasia was examined using Chi square.
Results

Participation rate
Clinic administration staff distributed 1185 recruitment slips, with 589 completed and returned to the interview team (50O/o return rate). Of these, 4O5 (690/0) patients indicated they were interested in finding out about the study. A total of 374 patients were told the details of the study, the remaining 31 patients were missed, either because they were called to their appointment or left the clinic before the interviewer had a chance to talk to them. Of these, 325 (870/0) patients gave their consent to take part in the study. Of those who initially consented: a further 27 patients later declined to participate; 5 were too ill to take part; 10 could not be contacted/interviewed; 1 failed to complete the interview; and 3 were administered the short version after scoring less than 24 on the SMMSE. A total sample of 280 patients completed the interview. Thus the overall participation rate, that is the number of patients who completed the questionnaire relative to the total number of recruitment slips distributed, was 24%, as detailed in Box 1.
Box 1 : Patient recruitment

Forty-three patients who completed the questionnaire did not have cancer (ie were attending the Outpatients Clinic for treatment of some other disease) and were excluded from analyses. Thus, the final sample of patients with cancer was 236. Fifty-seven (91O/o) of the patients who completed the pilot interview agreed and completed the retest.

Sample Demographics
Table 1 presents the demographic characteristics of the study sample compared with those of the New South Wales (NSW) Central Cancer Registry of new cases of cancer in 1996 (22), and the 1996 Census.(23) Due to the size of the NSW Central Cancer Registry sample, no statistical comparisons between the two groups were undertaken. However, it can be seen from Table 1 that the study sample may have been under-represented for those aged over 7O years and over-represented for patients with breast cancer and non-Hodgkin's lymphoma. A comparison of the patient sample with 1996 Census data from the Hunter Statistical Division (23) revealed no significant differences between the two groups in terms of religious affiliation.

Instrument Reliability
The instrument had acceptable test-retest reliability with high levels of exact agreement on all items (72-980/0).(20)
Patients' Attitudes to Euthanasia and PAS As shown in Table 2, the majority of participants (790/0

1185 recruitment slips handed out 43 589 (50%) completed and returned 43 405 (69%) interested in hearing study details (34% of all patients) 43 374 (92%) told details (32% of all patients) 43 325 (87%) agreed to participate (27% of all patients) 43 280 (86%) completed the interview (24% of all patients) 43 236 (84O/o)eligible, competent cancer patients (20% of all patients)

[n=187]) responded in the affirmative when asked if they supported the idea of euthanasia. Of these, 78% (n=185) thought euthanasia should be allowed when a patient is dying and wants to die, 440/0 (n= 104) thought euthanasia should be allowed when a patient is in pain and wants to die, while 15O/o (n=34) agreed that euthanasia should be allowed regardless of whether patients have a terminal illness or not.

Impact of Question on Patients" Responses

Kappa values, detailed in Table 2, indicate that the level of agreement between the reference question and patients' responses to other questions varied considerably. For instance, there was only slight agreement (20) between patients' responses to the question 'do you believe that a doctor should be able to deliberately bring about a patient's

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Table 1: Demographic and disease characteristics of patient sample (n=236) compared with NSW Central Cancer Registry data a of new cancer cases in New South Wales in 1996 (n=25899). Patient sample % (n) Gender Male Female Age 18 24 years 25 39 years 40 54 years 55 64 years 65 70 years over 70 years Marital status Never married Married or de facto Separated Divorced Widowed Work situation Employed Home duties Retired Other Religiona Catholic Christian (other) Other religion None 57% 43% 0% 5% 27% 30%
20%

NSW sample % (n) 55% 45% 1% 5% 16% 19% 14% (14269)

Patient sample % (n) Cancer typP Breast 20% (46) Colorectal 16% (37) Non-Hodgkin's Lymphoma 9% (22) Prostate 9o/o (21) Lung 9% (21) Other 37% (89) Perceived disease status ~ Cured 43% (84) Not cured, but controlled 48% (93) Not responding to treatment 9o/o (18) Physician-reported disease stage a Partial/Complete recovery 56% (121) Stable disease 27% (57) Progressive disease 17% (37) Physician-reported intention of treatment~ Curative 48% (113) Palliative 52% (120)

NSW sample % (n) 13O/o 14O/o 4O/o 14O/o 10O/o 450/0 NR (3424) (3704) (1093) (3522) (2531) (11625)

(134) (102) (0) (12) (63) (71) (47)

(11630)
(150) (1380) (4109) (4913) (3767)

18% 8% 73% 3% 9O/o 7% 25% 11% 48% 16% 17% 63% 6% 14%

(43)
(19) (171) (8) (20) (17)

45%
NR

(11580)

NR

NR

NR (59) (26)

(113)
(38) (39) (147) (14) (34) 27% (133190) 60O/o (296477) 1% (3622) 12% (63548)

NR = not recorded a For religion, patient sample data is compared with data obtained from the 1996 Census data for the Hunter Statistical Division (n=496837). (28) b Self-reported cancer type. c Total proportion may exceed 100% due to some patients having more than one type of treatment. d Total n=195 due to exclusion of'do not know' responses. e Total n<236 due to missing physician-reported data.

death?' and their support for euthanasia (K=O.11). However, there was substantial agreement (20) between patients' support for euthanasia and their willingness to vote to legalise euthanasia if a referendum were held (K=0.93). Further exploratory analyses revealed that 780/0 of those patients who indicated that they supported the idea of euthanasia also held the belief that 'life is sacred'. Additionally, 620/0 of patients who indicated that they did not believe a doctor should be able to deliberately bring about a patient's death were in support of the idea of euthanasia.

Impact of Patients" Own Definitions on their Responses

Table 3 details the major themes arising from patients' v e r b a t i m definitions of euthanasia. The most pervasive

theme was 'assisted death' which included all m e n t i o n s of external agents to b r i n g about death (440/0 of total sample). The next most c o m m o n theme was 'suffering' (41O/o) where concepts around pain, suffering and quality of life were mentioned, then simply ' e n d i n g life' (390/0) which did not m e n t i o n a n y agent for death. 'Choice' and 'own death' were the next most c o m m o n themes. The 'legal' and 'ethical' mechanisms for euthanasia (such as v o l u n t a r y and informed consent) were not often mentioned. W h e n the association between definition themes and support of the idea of euthanasia was explored, it was found that patients who indicated they supported the idea of euthanasia were significantly more likely to m e n t i o n issues of 'suffering' t h a n patients who were against the idea of euthanasia, (X2=7.616, p=0.003), as shown in Table 3.

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Cancer Patients' Attitudes Towards Euthanasia and Physician-Assisted Suicide

Table 2: Cancer patients' attitudes towards euthanasia (n=236), and level of agreement of responses with question 1 (kappa)
Question:

Do you support the idea of euthanasia? Can you t h i n k of a situation in which you would consider asking y o u r doctor to end your life or to help you suicide? 3. Do you believe doctors should be able to kill their patients? 4. Do you believe that life is 'sacred' (using your own definition of the term "sacred")? 5. Do you believe in a "right to die"? 6. Do you believe it is sometimes right for a doctor to take active steps to intentionally bring about the death of a patient who has requested it? 7. Do you believe it is sometimes right for a doctor to assist a patient to die b y withdrawing or withholding life-sustaining treatment, the burdens of w h i c h would outweigh the benefits? (n= 158) a 8. Do you believe that a doctor should be able to assist a patient to die? 9. Do you believe that a doctor should be able to deliberately bring about a patient's death? (n= 159) a 10. Do you think a person has the right to end their own life if they have a disease that c a n n o t be cured? 11. If a referendum were held in Australia, would you vote to legalise euthanasia? 12. If a referendum were held in Australia, would you vote to legalise doctor-assisted suicide?
b

1. 2.

% yes 79 69 14 81 83 68

%
no

%
DK

kappa b

15 29 80 14 12 21

6 2 6 5 5 11 0.67 -0.36 0.40 0.80 0.73

72 70 31 75 75 42

20 22 60 20 18 48

8 8 9 5 7 10

0.55 0.81 0.11 0.76 0.93 0.28

This question was not asked in the pilot, thus reduced sample size. Prevalence and biased adjusted kappa, calculated based on 'yes' and 'no' responses. Kappa calculations were based on this variable.

Table 3: Major themes arising from definitions of 'euthanasia' given by patients who supported (n=187) a or were against (n=34) aeuthanasia
Support Theme Assisted d e a t h (doctor or medical ending of life, someone to help end life, p u t down, not suicide, someone to kill you, family to help end life, assisted death, mercy killing, put to rest, murder) Suffering " (pain, suffering, no quality of life) E n d i n g life (ending life, h a s t e n i n g death, stop living, kill, killing, termination of life, quick death, premature death) Choice (request, wish, choice, decision) Own d e a t h (ending own life, own time to die, to have control over death) Illness (terminal illness, illness, later stages) M e t h o d s (lethal injection, tablet, withdrawal or withholding treatment, active or passive measures, deliberate/with intent, not natural, not withdrawing treatments, n o t giving medications to relieve pain/suffering, not physician-assisted suicide) Reasons (dignity, humane, not lingering, relieve b u r d e n on others, u n d e r certain circumstances, acceptance of the end, while still capable, benefit, best interest, painless/easy death, peaceful death, old/elderly, 'Good Death', not depressed, lack of symptom control, lack of palliative care, doctor giving up) Legal (legal, allowed to die, right to die, receiving permission) V o l u n t a r y d e a t h (voluntary, competent, informed consent) *
a

Against
% n %

80 86 72 64 63 46

43 46 39 34 34 25

19 7 14 15 12 3

56 21 41 44 35 9

25

13

26

36 19 15

19
10

2
1

6
3

indicates significant at p<0.05 (after Bonferroni correction) Total n is greater than 187 or 34 and total proportion is greater than 100%, as patients could use more than one key word or phrase.

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Discussion While it appeared that the majority of participants supported the idea of euthanasia when asked this specific question, patient views could vary significantly according to the language used, the specificity of the question asked, and the participants' own definition of euthanasia. The low participation rate for this study must be taken into account when considering the results of this study. For example, the study sample may have been underrepresented for those aged over 70 years, who might be expected to engage more in formal religion that younger age groups, although this group appeared representative of religious affiliation. It is worth noting that no patients indicated moral objections to the study and, importantly, m a n y of our respondents expressed religious beliefs, suggesting that they still chose to participate, despite their beliefs. While other studies into the attitudes of those with cancer or terminal illness also report consent rates of less than 300/0, it was clear that the 3-stage recruitment process required by the ethics committees implicitly discouraged participation in the project. The greatest attrition of the sample occurred before patients knew that the study topic was euthanasia, and only 340/0 of the original population of patients were told the topic of the study. When patients were told the topic, 920/0 agreed to hear the details of the study, and 870/0 agreed to participate. Professed support for euthanasia varied according to the language used ('kill' rather than 'facilitate dying' or 'assist death'), and according to specification (e.g. of patient request, suffering, or terminal illness). So, while this study found that the majority of participants professed support for 'euthanasia', patients who supported the fight to hasten death did not necessarily support physician assisted suicide. It is important to note that the term euthanasia does not, in itself, refer to patient request or even to the steps taken by the doctor - this detail requires further specification. Thus, euthanasia can be active or passive, voluntary or involuntary. In the survey, we made no normative claim about any of the questions asked (for example, that voluntary was good and involuntary bad), rather we left it to the respondent to infer meaning from the questions, that is, we hoped to gauge their interpretation of and response to the language used. Response to questions depended upon the specific content of questions, that is the mention of suffering,

request, and terminal illness met with a more positive response than questions which specified a doctor as the 'agent' of death or where emotive language was used (when professed opinions could switch poles). For example, while 79% of patients said they supported the idea of euthanasia, and 700/0 agreed 'a doctor should be able to assist a patient to die', 800/0 did not agree that 'doctors should be able to kill their patients'. This may reflect the value-laden nature of language and the 'de-humanising' sense of terms such as 'kill' in an area where both advocates and opponents of euthanasia appear to attach great moral significance to life. It appears from these results that the belief in 'life as sacred' is not related directly to the support of euthanasia, as many people who supported euthanasia also believed that life is sacred. However, patients who supported the idea of euthanasia were more likely to mention 'suffering' in their own definition than those who did not support euthanasia. The apparent discordance between the responses given to the questions in this study may reflect not only the impact of language but also both the tensions that emerge where one holds different, and at times, conflicting values, and the contested nature of m a n y moral concepts. This is perhaps most evident in the 78% of respondents who supported euthanasia who also indicated that they believed life is sacred.

Oonclusions While the majority of this patient sample appeared to support the idea of euthanasia, we must be very cautious in interpreting these results, given the low participation rate. Regardless, we suggest that researchers in this field should be circumspect about interpreting what support for 'euthanasia' means, unless this term is carefully defined, and the context around it clearly specified. 'Euthanasia' undoubtedly means different things to different people, and professed support can depend upon the individual's own definition, the language used in questions and the specificity of questions. Given the plethora of questions used in past research on this issue (1-6), a minimum set of standard questions (with regard to the circumstances in which killing/ending life/facilitating dying/euthanasing is morally acceptable) that could be asked across patient groups within this type of study may considerably help explication of this controversial subject.

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Corresponding Author Lynne Parkinson, Senior Research Fellow, Centre for Research and Education in Ageing, The University of Newcastle. Mail: Level 2, David Maddison Clinical Sciences Building, Watt Street, Newcastle, NSW, 2300; Email: Lynne.Parkinson@newcastle.edu.au
References 1. Suarez-Almazor ME, Belzile M, Bruera E. Euthanasia and physicianassisted suicide: a comparative survey of physicians, terminally ill cancer patients, and the general population. Journal Clinical Oncology 1997; 15:418-427. 2. Brown JH, HenteleffP, Barakat S, Rowe CJ. Is it normal for terminally ill patients to desire death? American Journal Psychiatry 1986; 143: 208-211. 3. Parker M. Medicine and the community - the euthanasia debate (letter). Medical Journal of Australia 1996; 165:457-457. 4. 0wen C, Tennant C, Levis J, Jones M. (1992). Suicide and euthanasia: Patient attitudes in the context of cancer. Psycho-Oncology 1992; 1:79-88. 5. Zigmond AS, Snaith PP. The hospital anxiety and depression scale. Acta Psychiatrica Scandinavia 1983; 67:361-370. 6. Layson RT, Adelman HIVl, Wallaeh PM, et al. Discussion about the use of life-sustaining tteatments: A literature review of physician and patient attitudes and practice. Journal Clinical Ethics 1994; 5:195-203. 7. Mitchell KR, Kerridge I, Lovat T. Bioethics and clinical ethics for health professionals. Social Sciences Press: Sydney, 1996. 8. Kuhse H, Singer P. Doctors' practices and attitudes regarding voluntary euthanasia. Medical Journal of Australia 1988; 148:623-626. 9. 0wen C, Tennant C, Levi J, Jones M. Cancer patients' attitudes to final events in life: wish for death, attitudes to cessation of treatment, suicide and euthanasia. Psycho-oncology 1994; 3:1-9.

10. Seale C, Addington-Hall J. Euthanasia: Why people want to die earlier. Social Science and Medicine 1994; 39:647-654. 11. Seale C, Addington-Hall J. Euthanasia: The role of good care. Social Science and Medicine 1995; 40:581-587. 12. Jaeobson JA, Kasworm EM, Battin MP et al. Decedents' reported preferences for physician-assisted death: A survey ofinfomlants listed on death certificates in Utah. The Journal of Clinical Ethics 1995; 6:149-157. 13. Molloy DW, Silberfeld M, Darzins P e t al. Measuring capacity to complete an advance directive. Journal American Geriatrics Society 1996; 44:660-664. 14. Rainbird K. Measuring the perceived needs of patients with advanced, incurable cancer: Towards evidence-based care of the dying. The University of Newcastle (Doctoral Dissertation): Newcastle, NSW, 1996. 15. A s h b y M. The fallacies of death c a u s a t i o n in palliative care. Medical.Journal of Australia 1997; 166:176-177. 16. Agostinelli B, Deniers K, Garrigan D, W a s z y n s k i C. Targeted interventions: Use of the Mini-Mental State Exam. Journal of Gerontological Nursing 1994; 20:15-23. 17. Mitrushina M, Satz P. Reliability and validity of the Mini-Mental State Exam in the neurologically intact elderly. Journal of Clinical Psychology 1991; 47:537-543. 18. SAS 6.12. SAS Institute Inc. 1996. 19. StatXaet 3 for Windows. CYTEL Software Corporation. 1996. 20. Byrt T, Bishop J, Carlin JB. Bias, prevalence and kappa. Journal of Clinical Epidemiology 1993; 46:423-429. 21. Miniehiello V. In-depth Interviewing: Principles, Techniques, Analysis. Longman: Melbourne, 1995. 22. NSW Central Cancer Registry, Cancer Research and Registry Division. Cancer in New South Wales: Incidence and Mortality 1996. NSW Cancer Council: Sydney, 1999. 23. Australian Bureau of Statistics Census of Population and Housing Newcastle. ABS (Statistical Subdivision),1996. (Electronic Citation): URL: http :/www.abs.g ov.au.

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