Him ORIGINAL CONTRIBUTION Attitudes and Desires Related to Euthanasia and Physician-Assisted Suicide Among Terminally Ill Patients and Their Caregivers Ezekiel J Emanuel, MD, PhD. Diane L. Fairclough, DPH Linda L- Emanuel, MD, PAD. /HILE NUMEROUS STUD- {es address physicians views regarding eutha- nasia and physician- assisted suicide (PAS), there are rela- Lively few studies of patients’ attitudes and desires, Reviews have characte ized the 7 patients who were granted. legalized assistance in death in Austra lia! and 43 cases of legalized PAS in Or cegon.?? Studies have also examined the attitudes and practices regarding eu- thanasia and PAS of patients with ean- cer, human immunodeficiency virus (HIV) infection, and amyotrophic lat eral sclerosis (ALS)."” Other studies have examined patients’ suicidal i ation and “desire for death,” but not eu- thanasia oF PAS." The that more than 70% of euthanasia and PAS cases involve cancer patients." They also show that, contrary to gen- cral perceptions, depression and hope- lessness, rather than pain, seem to be the primary factors motivating patients in- terest in euthanasia or PAS." Additional information regarding pa Lients’ attitudes and practices related to ‘euthanasia and PAS is needed. Fits, few ‘ofthe patients previously interviewed ‘garding euthanasia and PAS wer minally ill. However, because the Oregon law and most proposals for l galization are restricted (o the termi- nally il asa safeguard, the atitudes and experiences regarding euthanasia and PAS of terminally ill patients are ‘studies show 2460. JAMA. November 15, 2000—¥ Downloaded From: on 02/11/2018 Context Euthanasia and physician-asisted suicide (PAS) are highly controversial i= sues. While there ae studies of serious ill patients’ inteestin euthanasia and PAS, there are no data on the atitudes and desires of terminally ill patients regarding these isues. Objective To determine the attitudes of terminally il patients toward euthanasia and PAS, whether they seriously were considering euthanasia and PAS for themselves, the stability of their desires, factors associated with their desires, and the proportion of patients who die from these interventions Design Prospective cohort of terminally ill patients and their primary caregivers sur- veyed twice between March 1996 and July 1997. Setting Outpatient settings in 5 randomly selected metropolitan statistical areas and ‘Trural county Participants total of 988 patients identified by their physicians to be terminally ill with any disease except for human immunodeficiency virus infection (response rate, 87.4%) and 893 patient-designated primary caregivers (response rate, 97.6%). Main Outcome Measures Support for euthanasia or PAS in standard scenarios, patient-expressed considerations and discussions of their desire for euthanasia or PAS: hoarding of drugs for suicide; patient death by euthanasia or PAS; and patient- reported sociademographic factors and symptoms related to these outcomes. Results Of the 988 terminally il patients, a total of 60.2% supported euthanasia or AS a ypotheeal stuaton but ony 1.6% reported serous considering eutha asia or PAS for themselves. Factors associated with being lesslikely to consider eutha- nasia or PAS were feeling appreciated (odds ratio [OR], 0.65, 95% confidence interval [C1], 052-0.82), being aged 65 years or older (OR, 0.52; 95% Cl, 0.34-0.82), and be- ing African Ametican (OR, 0.39; 95% CI, 0.18-0.84). Factors associated with being more likely to consider euthanasia or PAS were depressive symptoms (OR, 1.25; 95% CI, 1.05- 1.49), substantial caregiving needs (OR, 1.09; 95% Cl, 1.01-1.17), and pain (OR, 1.26; 195% CI, 1.02-1.56). At the follow-up interview, half of the terminaly ill patients who had considered euthanasia or PAS for themselves changed their minds, while an almost equal number began considering these interventions. Patients with depressive symp- toms (OR, 5.29; 95% Cl, 1.21-23.2) and dyspnea (OR, 1.68; 95% Cl, 1.26-2.22) were ‘more likely to change their minds to consider euthanasia or PAS. According tothe care- givers of the 256 decedents, 14 patients (5.6%) had discussed asking the physician for euthanasia or PAS and 6 (2.5%) had hoarded drugs. Ultimately, of the 256 decedents, 10.4%) ded by euthanasia or PAS, 1 unsucestly attempted suid, and repeat- edly requested for her life to be ended but the family and physicians refused. Conelusions_nthissurvey, a small proportion of terminally il patients seriously consid ered euthanasia or PAS for themselves. Over few months, halfthe patients changed their minds, Patients with depressive symptoms were more likely to change their minds about desing euthanasia or PAS. {JAMA 200°2842460-2468 ww jamacom ‘ator Atations re ted the end of ace. 6, Hagnaron Cel Cente, ig 10, Room TOU, Conesonding Author andReprins:ExacclEmaruel, Natona lstuts of Heath, Bethesda, MD 20892 MD PD, Deparment of Cx Sloe, Warren 1156 No. 19 Reprinted (©2000 American Medical Association. All rights reservedImportant. Furthermore, studies of pa- tients have been largely one-time assess- ments! yet, because euthanasia and PAS are irreversible actions, longitudi- nal assessments of patients alttudesand, preferences are important."? Also, to out knowledge, no study has followed up pa- tients until death to determine what pro- portion of patients actually use eutha- nasia or PAS. Finally, no study has determined whether families were com fortable with the deaths when patients requested and died by euthanasia or PAS, We interviewed and followed up 988 patients, who were designated as termi nally illby their physicians, and their prt- mary caregivers to determine their ati- tudes toward euthanasia and PAS, what proportion of these patients seriously: ‘considered euthanasia and PAS for them- selves, how stable their desires were, ‘what factors were associated with thet desires, and what proportion of pa- Lients died from these interventions. METHODS: The overall methodology ofthis study thas been deseribed in detail." The {questionnaire is available from the au- thors on request Design and Setting This was a prospeetive cohort study that surveyed and followed up patients, des- ignated to be temminally ill by thetr phy sicians, and their primary caregivers in 6 randomly selected sites in the United Slates. The United States was divided into the 4 census regions, Within each, region, 1 metropolitan statistical area ‘with high managed eare penetration (20%) was randomly selected. One low managed care metropolitan statis- tical atea was also randomly selected, Among rural counties, 1 was ran- domly selected. The 6 sites were: Worcester, Mass; St Louis, Mo; Tue- son, Ariz; Birmingham, Ala; Brooklyn, NY; and Mesa County, Colo. articipants Physicians were asked to identify ter minally patients, and the participating patients were then asked to identify their primary caregivers. (©2000 American Medical Association, All rights reserved, Downloaded From: on 02/11/2018 ‘ATTITUDES ABOUT EUTHANASIA AND PHYSICIAN-ASSISTED SUICIDE Physicians. No physician was paid to refer patients, Lists of physicians within cach site were obtained from state boards ofmedical registration, state medical so- cieties, and membership lists rom the American Society of Clinical Oncology American College of Cardiology, Ameri- can Gastroenterological Association, and the American College of Chest Physt- cians. Within each metropolitan statis- tical area, physicians were randomly se- lected from these lists and mailed lewer requesting their participation in the study. The letter indicated thatthe pur- pose of the study was o “learn about how these patients [with significant illness] experience health eare” and that inter- views would be done in person. Physt- cians were asked to identify patients who “have a significant illness and.a survival lime of 6 months oF less, in your opin- fon.” They were not asked oF required tose formal criteria, such as the Acute Physiology and Chronic Health Evalu- ation (APACHE), but rather to use the clinical judgment for 2 reasons: in clini- cal practice, such as referrals to hospice and eligibility for PAS in Oregon, for- ‘mal criteria are not used, and the Study to Understand Prognoses and Prefer- ences for Outcomes and Risks of Treat- ments (SUPPORT) reported that physi- cian determination of patients’ survival was almost as accurate as formal crite- ria A total of 383 physicians referred patients, Patients. No patient or caregiver was paid for participation, Patients ident fied by physicians were mailed an es planation of the study with a postage paid “optout” card. The leter indicated that purpose of the study was to un- derstand “the attitudes of patients with a significant illness and their caregi ers towards the quality of the patient's health care [and their] perspective on [their] illness experience.” Ifthe opt- out card was not returned, the patient was contacted. Patients were eligible to participate if they had any significant illness excluding HIV or acquired im- munodeficiency syndrome with a sur- vival time of less than 6 months as de- termined by their physician, spoke English, had no hearing difficulty, and were competent to arrange an inter- view time and place and sign a con- sent form. Physicians referred 1472 pa- lients, of whom 341 were ineligible. Of the ineligible patients, 194 died, 116 be- ‘came mentally incompetent between re- feral and interview, and 31 could not speak English or had hearing limita- Lions, Of the 1131 eligible patients, 119 refused to participate and 24 could not be located. A total of 988 patients were interviewed (response rate, 87.4%). Caregivers. Patients were asked to identify their primary caregiver as the family member, friend, or other pe son who provided most of thetr assis- lance. Caregivers were ineligible i they spoke no English, had hearing limita- tions, or were not competent to sched- ule an interview and sign a consent form, Of the 988 patients, 70 reported not having caregivers and 3 caregivers did not speak English. OF the 915 el gible caregivers, 22 refused to particl- pate. Overall, 893 caregivers were in- lerviewed (response rate, 97.6%). Follow-up. Two to 6monthsalter the Initial interview (mean, 125 days), pa- tientsstil alive were reinterviewed: if pa tients had died, the caregivers were interviewed, Of the 988 patients, 699 ‘were sill alive when approached for an Interview but 17 were mentally incom- petent and 32 could not be located oF refused to participate. A total of 650 pa tients were reinterviewed (response ra 95.3%). Of the 289 patients who died, Shad not identified a caregiver, 3 ca givers were tool tbe interviewed, and 27 caregivers could not be located ot fused. Overall, 256 caregivers were Interviewed (response rate, 90.5%) Twenty-four interviewers from Na- tional Opinion Research Center, spe- ally tained to interview terminally ill patients, conducted all interviews in person at a site determined by the pa tients, usually their home. All inter~ views were completed between March 1996 and July 1997. ‘Survey Development Survey development was guided by a conceptual framework previously out- lined.” In conjunction with the Cet (Reprinted) JAMA, November 15, 2000 Vol 204, No. 19 2464NTIVTUDES ABOUT EUTHANASIA AND PAYSICIAN-ASSISTED SUICIDE ler for Survey Research and the Na- ional Opinion Research Center, 4 survey instruments were developed in 9 steps: (1) literature search; (2) 15 fox caus groups including patients, earegiv= ers, elderly persons, hospital chap- Jains, anda variety of health providers: (3) 6 in-depth interviews with termi- nally il patients and earegivers: 4) ine strument creation; (5) cognitive pre~ testing: (6) behavioral pretesting: (7) reliability assessment; (8) review by an expert panel; and (9) final survey re- finement, The surveys were prctested with 18 patients and 15 caregivers in Cleveland, Ohio, and Dallas, Tex The inital patent and caregiver sur- veys contained 133 and 118 que Lions, respectively, covering 10 do- mains: (1) symptoms; (2) social supports; (3) communication with Incalth providers: (4 spiritual mean- ing: (5) eareneeds (6) end-oflife plans; (7) economie burdens; (8) sociodemo- sraphies; (9) preferences regarding end- oflife care and euthanasia and PAS; and (Qo) stress ofthe interview. Because the terms can be confusing and arouse emotional reactions, que lions on euthanasia and PAS did not use these terms but instead relied on peevi- ‘ously reported descriptions. In the i tal survey, patients atinudes toward eu- thanasia and PAS were assessed by means of question used in national se- vyeys since 1950: “When a person has a disease that eannot be cured, do you think doctors should be allowed by aw to end a patient’ life by some painless means fa patient and bis family re- aquest it?" During the follow-up inter~ ‘view, patients and caregivers were asked about 2 previously published scenarios alicrbeing told to assume there were no legal restrictions.°!"* ample: “A competent patient develops terminal cancer which invades the bones resulting in excruciating pai, Current levels of morphine, nerve blocks, and other treatments are failing to com- pletely control the pain. The patient has scen a psychiatrist and isnot clinically depressed but repeatedly asks foralife- cendling injection ln this case is ital ight forthe doctor, upon request from the pa 2 Bor ex- 2462. JAMA. November 15,2000 Downloaded From: on 02/11/2018 ol254, No 19 Reprint) tient, to administer intravenous drugs, suchas potassium, to intentionally end the patient's life?" Similarly, “A com petent patient has terminal eancer with afew months to live. The patient has well-controlled pain and ean continue sel-care but is inereasingly concerned cover the burden that deterioration and death will place on his/her family. The patient has seen a psychiatrist and is not clinically depressed but repeatedly asks fora life-ending injection. In this ease fs i all right for the doctor, upon re quest from the patient, to administer ine ravenous drugs, such as potassium, to intentionally end the patients life?"??* Regarding actions related to euthana- sia and PAS, patients were asked ques- tions, some of which had been prev ously used," such as “Have you ever seriously discussed taking your life or asking your doctor to end your life?” “with whom did you have that conves sation?” similarly, caregivers were asked “Did {patient's name] ever hoard drugs for the purpose of using them to end (hisher) life? and “Did [patients name] ever ask the doctor to inject (hitm/her) with medications or to preseribe medi cations so that (he/she) could take ther to intentionally end (his/her) life?” Pa- tients and caregivers were asked “Atany point did you worry that someone might intentionally end your life prema- trey?" Caregivers were asked: “Did you ever actually talk with the doctor about injecting [patient's name] with medica- tions oro prescribe medications so that (he/she) could take them to intention- ally endl (his/her) life?™ and “Did [pa- tient’s name die at peace?™ Questions on symptoms were adapted from the Wisconsin brief pain inven- tory" Medieal Outcomes Study (MOS) short-Form 36,” Easter Cooperative Oncology Group (ECoG) performance and on social supports from the MOS Social Support Seale.”” The MOS scale on depressive symptoms was used because it avoids questions on veg- ctative functions, such as disturbances of sleep and appetite, that are fre- quently disrupted at the end of life re- zardless of depression, ane because it has been favorably compared with other measures of depression and is highly pre- dictive of major depression. Using ques- tions from Siegel etal.” Rice etal," and SUPPORT,” patientsand caregivers were asked about care needs. Questions on ‘economic burdens were adapted from previous studies.” Human Subjects Approval The protocol, letters, survey instru- ments, and consent documents were ap- proved by the Harvard Medical School and Dana-Farber Cancer Institute in- stitutional review boards as well asthe institutional review boards of 38 medi cal institutions in the 6 sites, Data Analysis, The characteristis of patients who were reinterviewed and those who died whose caregivers were interviewed were compared using analysis of variance for age; education and income by the Cochran-Mantel-Haenszel x" test; and sex, race, religious affiliation, marital status, and disease by the x? test of in- dependence for unordered categorical variables For multivariate regression models, statistically significant groups of fac- tots were identified from potential ex planatory variables in 5 groups: demo- ‘graphic characteristics, health-related symptoms, disease and health service factors, economic and caregiving bur- dens, and communication factors Ifsta- Ustical significance was observed for the ‘group, each explanatory variable within the group was evaluated in bivariate analyses at @=0.5. Stepwise logistic ‘gression was used to identily the eovar- iates that explained the greatest vari Lion in the outcomes, such as supporting ‘euthanasia of PAS for a patient with ut- remitting pain or seriously considering ‘euthanasia or PAS, Specific covariates of Interest, such as pain, were also forced. into the model. RESULTS Most patients had substantial symp- tomsat baseline, with 50.2% experienc ing moderate or severe pain, 17.5% bed- ridden more than 50% of the day, 70.0% having shortness of breath while walk- (©2000 American Medical Association, All rights reserved.ing 1 block or less, 35.5% having url= nary or fecal incontinence, and 16.8% having depressive symptoms (TABLE 1). ‘Within the previous 6 months, 66.5% of the patientshad been hospitalized, 36.8% hada surgical procedure, and 22.3% had ‘hospital stay involving a period in the Attitudes Toward Euthana: and PAS Fully 60.2% of terminally ill patients supported permitting euthanasia or PAS ian abstract situation.”* OF the pa- lients who survived and were reinter- viewed, 54.5% supported euthanasta for terminally il patient experiencing un- remitting pain while 32.7% supported euthanasia for terminally ill patients ‘without pain who felt they were a bur- den. Among caregivers of decedents, 58.7% supported euthanasia for patients in pain while 29.1% sup- ported euthanasia oF PAS for patients who believed they were a burden Multivariate analyses revealed that in all 3 situations, patients who reported they were more religious or who wer African American were significantly less likely to support euthanasia or PAS (TABLE 2). In the multivariate analysis, patient autudes were not related toag education, income, length of illness, or physical activity. Importantly, patients experiencing moderate or severe pain ‘were not more likely to support eutha- nasiaor PASin the pain scenario (P=.61). Among the 650 patients reinterviewed, patients who were Catholic (odds ratio [OR], 0.54;05% confidence interval [C1 0.34-0.85), who felt tranquil and serene (OR, 0.80; 95% Cl, 0.66-0.96), and who received home care (OR, 0.63; 95% Cl 0.40-0.98) were less likely to support, ‘euthanasia oF PAS, In the multivariate analysis, caregiv- cers of deceased patients who reported that caring for the patient was interfer ing with their personal lives were sig- nificantly more likely to support eutha- nasia oF PAS for a patient who thought he or she wasa burden (TABLE 3). Care alvers who were more religious, Afri ccan American, and who reported more social supports were significantly less ‘ATTITUDES ABOUT EUTHANASIA AND PHYSICIAN-ASSISTED SUICIDE Likely tosupporteuthanasisorPASinthe vider. Compared with patients with, samme situation. Caregivers assessmentof other terminal illnesses, cancer pa- the patient’spain near the end of life was ents were not significantly more likely rot associated with support for eutha- to have thought about or discussed e rasta oF PAS for patients in pain thanasia or PAS (11.6% [59/508] can cer vs 9.5% [41/432] other terminal Patients’ Personal Preferences illness; P=.29). Interestingly, among pa- Regarding Euthanasia and PAS tients who supported euthanasia in the Initially, 10.6% (100/943) of termi- abstract ease, 14.3% (73) considered eu nally ill patients had seriously thought thanasia or PAS for themselves while about requesting euthanasia or PAS for 6.8% (23) of those opposed had done so themselves, and 3.1% (29/043) had dis- (P<001) cussed euthanasia or PAS for them- In multivariateanalysis, patients who selves. Of these, 58.6% (17/20) had felt more appreciated, were aged 65 talked with their family, 41.4% (12/20) years and older, and were African with a friend, and 44.8% (13/20) with American were significantly less likely their physician or other health eare pro- to have personally considered eutha- ‘Table 1. Sociodemographic Characters of Terminal Patients” ‘AlTeminally Patents Who Patents Patients) Survived Characteristic in=609) ‘gaan a T RETO Ser Men 228. 459) eran Be BE Fae ‘i 79 ‘Rican Baran 137 Taz ter Ta a Faigon Frotectant Gatos Je ter imasane Marie or ving wih pr aomed ter Eiieaten, Grade Some high schoo Fear dase ‘coro ter (©2000 American Medial Association, All rights reserved. (Reprinted) JAMA, November 15, 2000-Vol 204, No. 19. 2468 Downloaded From: on 02/11/2018NTIVTUDES ABOUT EUTHANASIA AND PAYSICIAN-ASSISTED SUICIDE nasia or PAS (Table 2). Conversely, pa- PAS for themselves remained con- interest while 50.7% (36/71) were no tients who had depressive syimploms, stant from the initial interview to the longer interested (Figure). Yet, an al- had more caregiving needs, and re- follow-up interview (11.5% [71/620] most equal number of patients who had. ported more pain were significantly initially and 10.3% [64/620] at not initially personally considered eu- more likely wo have personally consid- follow-up). However, about halthe pa-thanasia oF PAS (29 patients) did so cred euthanasia oF PAS jents initially interested in euthana- later in the couse of the illness siaor PAS and who lived changed their Terminally ll patients who had newly Stability of Patients’ Personal minds (FIGURE). Among surviving pa- thought about euthanasia oF PAS for Preferences Over Time tients who initially personally consid- themselves at the follow-up interview The proportion of terminally ill pa- ered euthanasia or PAS, 49.3% (35/ _ weresignificantly more ikely to have d tients who thoughtabout euthanasia or 71) continued to have a personal _ pressive symptoms (OR, 5.29; 95% Cl, ‘Table 2, Univaate ana Multvarate Analses of Pabenls Support forand Petsona lnterestn Euthanasia and Pron Assted Sulade PAS)" “tude Toward Euthanasia and PAS Personal intrest in Euthanasia or PAS Univariate Multvarite Personal Univariate OR Multivariate Supported "OR ot Ono Interestin of Roperted “OR Wrth No.With Euthanasia Support © Suppert No. With Euthanasia "Interest Characteristic Characteristic _Characteristict orPAS,%t (05% Cl)__(@5WCHG_Characteristict oF PAS, % (HNC) (95N CH Semeatat or ST wae oe 128 ates Teyaigous aT TOO PaTORy COSI wo 30 OTST inte Hepa, 73 40 ei Tz ‘nd ther ‘ican Brera Tae O_O PROS OOO TT Bi OREO, OTST Ags >eby a B40 I Tae igo B5y er 320 OT BESTA, Ba Ba OST OAR ONO Highschoolories 512 Ea 36 8 Somocxioge SB 70 TROT OETA = Tai ETT orb ‘room 825000, i we ee Ta inoore S25 000, Eu) 60 TUBER TET, ea TROT Leng afiness .24; poor physical functioning, for Euthanasia or PAS able comparisons, trendsin thedatasug- P=.00; in multivariate analysis: pain, According to the primary caregivers of — gest that patients who were female, had P=.ot; physical functioning, P=.63).__ decedents, 5.6% (14/249) ofpatients had _ more unmet care needs, used hospice, discussed with the caregiver asking the and had living wills were more likely 10 tient and Caregiver Feat physician for euthanasia or PAS in the discuss euthanasia or PAS with physi- of Unwanted Euthanasia last 4 weeks of their lives. Only 1.6% cians or hoard drugs for PAS (TABLE 5) Among the terminally il patients rein- (4/248) were known tohave actuallydis- Overall, 11.19% (27/244) of the cat terviewed, 3.5% (22/624) were wor- cussed euthanasia or PAS with their phy- givers reported that ifthe patient had ried that someone might give them eu sician, 2.5% (6/240) had hoarded drugs asked them for assistance to end their thanasia involuntarily. Similarly, 7.2% for PAS. and 0.8% (2/240) had done both lives by euthanasia or PAS they would (18/249) of caregivers reported worry (TABLE4). Among the caregiversofdece- help. Even among the caregivers who ing that someone might commit invol- dents, 2.4% (6/250) had themselves found euthanasia or PAS ethical for unre- untary euthanasia on the patient. Pa- thought of asking the physician to per- _mitting pain, only 17.9% (23/128) were Lients who worried about involuntary form euthanasia or PAS while 1.6% willing toassist with euthanasia or PAS. euthanasia were more likely to be (4/250) actually discussed these inter- Ultimately, of the patients who actu younger than 65 years (OR, +85; 95% _ ventionswith the physician (Table 4).In__ally discussed euthanasia (n=4) or hhoarded drugs (n=6) for PAS (2 pa- tients both discussed euthanasia and hhoarded drugs), data from the caregiv- cers on the actual circumstances of their ‘Table 3. Unarate and Multvafate Analyses of Categvels Support for Euthanasia and Physiian-Assisted Suicide PAS)" ‘Supported Unwvarate OF Eiisa “ct Suppor Not orPAS Sct “hese ——— Sarat aa Figure, Dpostion of Fatenis eneved ‘ou inereatin euthanasia or feyrigos sao ozs Physician-Asssed Suicide (PAS) hte Hepa aaa iat ‘fan Arcan B20 POET IIT == ig By Tee (cn ete ioe =5y 16a TET i Figiecoal dara ores ial 250 eae Sarpcalegeo aoe Toe noon incr 25000 Toa 280 T incor £52500 asa ee Pal onset TH aaa Simmas eager : Pal cone rete wah aE TREAD r cagqrer a hat Gaegher paces plano 5255 oy faye rodate rare pin eaten aibeardl te ieee Caregiver parcanves patient to CF ae 1.05 (080-136) pen ree fe cro pana ho endl ia (area, Greg tas Tov erro gps 5 oneccase Garogier fas rode or mary 167 253 OBUOEUOSY OT ware Seer Sera ora {©2000 American Medical Assocation All rights reserved (Reid) IA, veer 15, 2000-Vol 2, No 19 2468 Downloaded From: on 02/11/2018NTIVTUDES ABOUT EUTHANASIA AND PAYSICIAN-ASSISTED SUICIDE ‘Table 4: The Pracice of Euthanasia ard Physica Asssted Sulade (PAS) By Terminal Hi Patents (n= 256) as Reported by Caregiver" Patiants Wh ‘Action Reported by Caregiver Died, No. (3) aan acumsed eafanasi or PAS the tet woke TS Ta 6a) ant asked physician er eatranasa or PAS ar Patan hoarded erga for PES. Be ‘Caregiver consdored asking pryaGan about euFarasa or PAST BA) ‘Taragher asked phyeican fr patents euthanaaia a patent had acke fr fep wih euanasa andor PAS, rege wouaTane Bey Provided heb death were available forall but 1. Only 2 (25%) had thought about euthanasia (oF PAS for themselves atthe initial in- terview. One patient (0.4% ofall 256 pa- tients who died) died by PAS, 1 (0.4%) tried to commit suicide by eatbon mon- ‘oxide poisoning 2 months before death ‘put failed, and 1 repeatedly requested that hherlife bended, but her family and phy- sician refused. All 3 had malignancies and ‘were white and older than 70 years. In the PAS and attempted suicide eases, the patients were male, None had consid cred euthanasia or PAS intially. The pa- tient who committed PAS was diag- nosed with cancer within the year; he did not have limited activity, had litle pai did not have depressive symptoms, and hhad few care needs. He did not receive hospice care, and he had significant eco- nomic burden from his health care ex penses. His caregiver demonstrated de- pressive symptoms. His caregiver reported that “he did not have [any] quality of lie at the end. [The disease] ‘as to0 much for him to bear; there was not acurefor him.” The family of the pa Lient who tried unsuccessfully to com- mit suicide reported poor communica lion with the patient, The patient reported no pain, While the patient ceived hospice care, the caregiver re- sented hospice and the fact that the pa- Lient’s primary physician did not seem responsive. They were uncomfortable ‘with the way the patient died. In the case in which the family refused to help the patient end her life, she was bedridden ‘with moderate pain and substantial care needs, receiving both hospice and home care. The family stated that the patient ‘was “ambivalent” about euthanasia and PAS: “[She] would not take the ini 2466. JAMA. November 15,2000 Downloaded From: on 02/11/2018 204, No 19 Reprints) Live, She wanted ittaken care of for her.” The family did not appear to fear pros ecution butstated:"[Euthanasia] was not a fair [emotional] burden forthe patient toputon the family.” Ultimately shedied at home with her husband. The family was very comfortable with the way she died. OF those patients who personally discussed euthanasia or PAS with their physician or hoarded drugs, half (4/8) died at home or ina residential hospice, and the vast majority oftheir caregivers reported tha the patients “died at peace COMMENT This is the first study to our knowledge to assess the attitudes and experiences regarding euthanasiaand PAS of paients deemed terminally ill by their physt- cians and to follow up the patients until death. Ourdatasuggest 3 consistent con- clusions about attitudes toward eutha- nasiaand PAS. First,a majority of Ameri- canssupport the possibility of euthanasia ‘or PAS lor patients with unremitting pa being terminally llor having eared fora patient who just died does not seem to alfect these views.'*72" Whil a major- lty of those surveyed find euthanasia acceptable for terminally il patients with ‘unremitting pain, less than a third sup- portit when the patient desires itbecause of fear of being a burden on the faim- ily:**!* Finally, African Americans and religious individuals are more likely to ‘oppose euthanasia or PAS." Despite this support for euthanasia oF PAS, these interventions play a role for relatively few dying patients. In this study, about 10% of terminally ill pa- Lients reported seriously considering e thanasia or PAS for themselves and less than 4% had discussed these interven- tions witha physician or hoarded drugs for PAS, This is much lower than the proportion of patients who say that they ‘can imagine circumstances in which they might consider these interventions, aby pothetical question.** In this study, only 0.49% ofall decedents (1/256 patients) ‘was reported to have actually died by eu- thanasta or PAS. Ifthese data are reps sentative of the United States, extrapo- lated to the approximately 2.4 million persons who die each year, they would, suggest that about 250000 decedents consider euthanasia or PAS, just under 100000 discuss these interventions oF ‘hoard drugs, but fewer than 9600 people die annually by euthanasia oF PAS, The actual numbers are likely to be even lower since many people die sudden! ‘and 30% 10 50% of the 24 million dec dentsare incompetent months or years prior to death, Patients in both groups could not request euthanasia oF PAS." These data suggest rates of euthanasia oF PAS higher than Oregon's officially reported 0.00% rate of PAS, but less than the 3.4% rate in the Netherlands." Ultimately, euthanasia and PAS may not be particularly pivotal interventions, since for more than 95% of deaths they do not contribute to a “good death.”* Thisstudy extends to terminally il pa- tients the finding that most of the key: determinants of interest in euthanasia and PAS relate not to physical symp- toms but to psychological distress and care needs.“ In this study, psychologi- cal factors—nonvegetative depressive symptoms and patients sense of a lack of appreciation—were associated with paliente considerations and planning of euthanasia and PAS. In addition, this study found that terminally ill patients who reported substantial care needs were also more likely to consider e1 thanasta or PAS for themselves. In- deed, when patients had substantial care needs, caregivers were also more likely tosupport euthanasia and PAS. Itis the first study to report that pain played a role in stich considerations. This sug- gests a tension between attitudes and practices, between the reason people find euthanasia and PAS acceptable— predominantly pain"®2"—and the main (©2000 American Medical Association, All rights reserved.