good and bad dying from the perspective

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Good and Bad Dying From the Perspectiveof Terminally Ill MenElizabeth K. Vig, MD, MPH; Robert A. Pearlman, MD, MPH

Background: Understandingthe rangeof patientsviewsabout goodandbaddeaths maybe useful toclinicians car-ing for terminally ill patients. Our current understandingof good and bad deaths, however, comes primarily frominput fromfamiliesandclinicians.Thisstudyaimedto learnhowterminally illmenconceptualizegood andbaddeaths.

Methods: Weconductedsemistructuredinterviews with26 men identified as havingterminalheart disease or can-cer.Participantsdescribedgoodandbaddeathsinasectionofopen-endedquestions.Participantsalsoansweredclosed-endedquestionsaboutspecificend-of-lifescenarios.Theopen-endedquestions weretaperecorded, transcribed, andana-lyzed using grounded theory methods. The closed-endedquestionswere analyzed using descriptive statistics.

Results: We found heterogeneity in responses to ques-tions about good deaths, bad deaths, and preferred

dying experiences. Participants voiced multiple reasonsfor why dying in ones sleep led to a gooddeath and whyprolonged dying or suffering led to a bad death. Partici-pants did not hold uniform views about the presenceof others at the very end of life or preferred location of dying.

Conclusions: In discussing the end of life with termi-nally ill patients, cliniciansmay want to identify not onlytheir patients views of good andbad deathsbutalso howthe identified attributes contribute to a good or bad death.The discussion can then focus on what might interferewith patients attainment of their preferred dying expe-rience and what may be available to help them achieve adeath that is most consistent with their wishes.

Arch Intern Med. 2004;164:977-981

T O HELP THOSE WITH TERMI-nal illness achieve the bestpossible experience of dy-ing, clinicians need toknowwhat theirpatientswant andwhat they want to avoid at the very end of life. Previous attempts to define good andbad deaths have relied on input from fam-ily members, 1-3 a combination of patients,familyand/or clinicians, 4,5 andend-of-lifeex-perts. 6 Other studies, however, have illus-trated that patients, families, and clini-cians may all interpret the experience of dyingdifferently. 7-12 Severalstudieshave fo-cused onpatients perspectives of good andbaddeaths. 13-15 Only1 of these studies lim-ited enrollment to individualswhowere ac-tively facing a terminal illness with an es-timated life expectancyof6 months or less,and that study examined relatively young

patientswithadvanced AIDS.15

Our goalwasto study the perspective of older patientswith commonterminal illnesses,cancer,andend-stage heart disease.

A primary goal of this study was tolearn how a group of terminally ill men de-scribed good andbaddeaths.Wealso wereinterested in howcomponents from thesedescriptionscontributed to a good or baddeath. To obtain rich data that were notinfluenced by any investigators precon-

ceived ideas of good and bad deaths, weopted touseopen-endedquestions. Toob-tain additional information about prefer-ences for the veryend of life, wealsoaskedseveral closed-ended questions.

METHODSDESIGN

The design was a qualitative study involvingone-on-one interviews with terminally illmento determine the components of a good and abad death.

PARTICIPANTS

Participants were enrolled in a study to iden-tify thecomponents of quality of life at the endof life.Physiciansfromgeriatrics, general inter-nal medicine, oncology, and cardiology clinicsat 2 university-affiliated medical centers iden-

tified potential participants with estimated lifeexpectanciesof 6 monthsor less fromeithercan-cer or heart disease from their panels of pa-tients. Patients with these illnesses were cho-senbecausecancerandheart diseasearethemostcommoncauses ofdeath in theolderadultpopu-lation. 16 Physicians were provided with refer-ence material to help them estimate prognosisof 6 months (ie, criteria fora Karnofskyperfor-mancescale score of 50 forpatientswith can-cer17 andthe hospice eligibilitycriteriaof theNa-tionalHospiceOrganization forheart disease 18).

ORIGINAL INVESTIGATION

From the Department of Medicine and Division of

Gerontology and GeriatricMedicine, University of Washington, Seattle (Drs Vigand Pearlman); and Geriatricsand Extended Care (Dr Vig)and Geriatric Research,Education, and Clinical Center (Dr Pearlman), Veterans Affairs Puget Sound HealthCare System, Seattle. Theauthors have no relevant financial interest in this article.

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Potential participants received a letter from their physi-cian, introducing the study and providing a telephone num-ber if no further contact was desired. During a telephone con-tact from a member of the research team (E.K.V.), potentialparticipants learned about the study and, if interested in par-ticipating, gave verbal consent to be screened for eligibility.Screening exclusion criteria included moderate or severe cog-nitive impairment reflected by 5 or more errors on the ShortPortable Mental Status Questionnaire 19 and failure to acknowl-edge that they were seriously ill.

In designing this study, we believed that those with sig-nificantcognitive impairment and those who didnot acknowl-edge that they were seriously ill might not be able to providein-depth descriptionsof goodor bad dying experiences.Thoseeligible and interested in participation gave written consent atthe start of the face-to-face interview. Of 41 individuals solic-ited to participate, 33 were eligible. Those who were not eli-gible had either died or were reported to be too ill to partici-pate. No potential participant was excluded because of a lowShort Portable Mental Status Questionnaire score or failure toacknowledge that his illness was serious.

Of the eligible potential participants, 26 (79% of the eli-gible subjects) agreed to participate.

The participants included 13 men with cancer and 13menwith heartdisease. Allbut 1 participant were veterans. Themeanageof bothgroups was 71years.All participants withcancer werewhite; 5 participants with heart disease were African American.Twelve participants with cancerand 10 with heart disease weremarried or partnered. New subjects were enrolled until theo-retical saturation was reached, that is, until no new themesemerged from answers to the open-ended questions in the in-terview. 20(pp61-62) TheHuman Subjects Division of theUniversityof Washington approved all study materials and procedures.

DATA COLLECTION

Subjects participated in semistructured interviews. One inter-viewer (E.K.V.) conducted all interviews at the most conve-nient location for the subject. First, participants were asked todescribea gooddeath and a bad death. Responses to these ques-tions were tape recordedandtranscribed verbatim.Second, par-ticipants rated the importance of end-of-life issues suchas pres-ence ofothers whiledyingand locationofdeath.These questionswere answered using a 5-point Likert scale ranging from notimportant to very important. Participants also answereddemographic questions, completed the Yesavage Geriatric De-pression Scale, 21 and were asked if they were depressed. 22 Anyspontaneous comments in response to the closed-ended ques-tions were transcribed verbatim by the interviewer.

DATA ANALYSIS

Themes emerging from the interviews were incorporated intoa codingscheme. Transcriptswere coded by 2 investigators in-dependently, the assigned codes were compared, and discrep-ancies in coding were resolved through discussion. Thecoded

text was entered in a qualitative analysis database and ana-lyzed using the grounded theory methods.Grounded theory uses a systematic method to divide and

reorganize qualitativedata and to facilitate interpretation. It in-cludes 3 levels of coding (open, axial, and selective) with theultimate aim of developing a new theory about a phenom-enon. 20 During open coding, researchers categorize data fromsources such as interview transcripts into broad categories orthemes. During axial coding, the properties of each categoryare characterized and the relationships between categories areexamined. Finally, in selective coding, the categories are or-ganized into a framework to explain the phenomenon.

In this study,we used open andaxialcoding methods.Thisprocess of analysis was used to categorize thecomponents of agood and a bad death, to learn how themes contributed to agood or bad death, and to compare the content of responsesgiven by participants with cancer and heart disease.

Steps taken to ensure the trustworthiness of the qualita-tive data included theoretical saturation 20 (no new themesemerged during interviews with the last 3 participants en-rolled), an evaluation of intercoder reliability 23 (assignment of codesby2 investigators across3 transcripts was77%),and theo-retical verification 24 (the results were presented to 2 end-of-life researchers familiar with qualitative methodology). Thequantitativedatawereanalyzedusing descriptivestatistics.Thesedata provide complementary information to the qualitative re-sults and are included for descriptive purposes only.

RESULTS

Of the 26 participants, 6 with cancer and 6 with heartdisease described their health as poor or very poor.Eight participants with cancer and 8 with heart diseasedescribed their quality of life as best possible orgood. Two participants with heart disease and 1 withcancer were mildly depressed (6-8 depressed answers

on the Geriatric Depression Scale). One participantwith heart disease and 2 with cancer were more de-pressed ( 8 depressed answers on the Geriatric De-pression Scale).

Participants did not hold a uniform view of a goodor bad death. Table 1 and Table 2 list the themes men-tioned by at least 3 participants in descriptions of goodand bad deaths and the number of participants identify-ingeachtheme. Samplequotations illustratingeachthemearealso provided.No participant mentionedevery theme.Responses of participants with cancer contained similarthemes to the responses of participants with heart dis-ease. The results, therefore, have not been divided intoillness category. Participants with and without depres-

sion mentioned similar themes.In addition to identifying components of good andbad deaths, analysis of the qualitative data yielded 2 ad-ditional findings. First, althoughparticipantsusedmanyof the same terms in their descriptions, multiple rea-sonsemerged for how these themes contributed toa goodor bad death. Second, past experiences with death andwith inadequately controlled symptoms often influ-enced participants views of good and bad deaths.

Probing participant responses with further ques-tions provided information on how a theme contrib-uted to a good or bad death. Participants offered severalreasons why dying in ones sleep was associated with agood death, for instance.Explanations included that the

dying individual would (1) not know death was immi-nent, (2) not be in pain at the moment of death, and (3)die quickly, peacefully, or easily. As one individual de-scribed, Oh, just going to sleep one night and not wak-ing up. It would be a very easy, fast way to go, no drugs,no side effects, so to me that would be real easy.

Eleven participants identified prolonged dying witha baddeath.To some, prolongeddying meant havingpro-longed pain. Several others believed that prolonged dy-ing would cause their families to suffer. They expressedconcerns about the emotional, financial, and caregiver




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burdens to loved ones that would be associated with pro-longed dying. One explained,I dont want to hang around. That just makes it miserable foreverybody around you. You know, your kids and everythingcome to see you, and they say, I wonder how long Dads gotnow. They puttheirarmsaround Mom andconsole her, let herknow that theyre with her when the time comes.

Those participants who identified suffering with a baddeath were asked to explain why. To some, sufferingmeant being dependent on others. One participant de-scribed the end ofhis aunts life as he explained how suf-fering, to him, meant being dependent:

Just laying andsufferingor notbeing able todosomethingwouldbe bad . . . She couldnt feed herself. She couldnt do nothing.Then toward the end, they even had to feed her intravenouslyto keep her alive.

To others, suffering meant being in pain. For example,another participant explained, by describing the end of his mothers life, how suffering meant having pain:And my mother seemed to suffer at the end. She was losing herlegs from diabetes, and she was in a lot of pain, or at least shefelt like she was. She was in a coma, but she couldshe wouldmoan and all if anybody touched her, especially her legs.So youknew that shewasifshewasconscious, shewassuffering . . .

Participants definitions ofgood andbaddeathswereoften influencedby past experiences. As illustrated in thepreviousparagraph, some participants descriptionsof baddeaths were influenced, in part, by deaths of loved ones.One participant described a good death:. . . my granddad, he just sat down in a chair one morning, a

rocking chair, and he said he felt a little cool. And she [par-ticipants grandmother] said, Ill get you a blanket. And whenshe came back with the blanket, he was gone.

Another participant recalled thedeath ofa hospital room-mate whenhehad beena patient inan intensive care unit.He described listening to his roommate die with short-ness of breath as, the worst thing that ever happened tome. This participant had also experienced shortness of

breath firsthand:. . . youre on one of these ventilators, if youre in the hospi-

tal, when theywhen they dontworkquite right. AndIve hadthat happen to me. And you cant get enough oxygen quite.

Because of his past experiences with the death of his hos-pital roommateand withhisowndyspnea, this participantdescribedabaddeathasonewithshortnessofbreath,IhopeIdontdielikethat,whenyourefightingtogetyourbreath.

Table 3 gives the participants responses to theclosed-endedquestions. Although most participants (20

Table 1. Components of Good Deaths and Illustrative Quotations

In my sleep (n = 14) A good death, for me, would be to slip away quietly in my sleep, by and large, with no pain or tospeak of or I justwhen the time comes, Id see the Lord and just like stepping off a platform andsays, Here I am. Thats about it.

Quick (n = 11) A good death? 85 [years old] of a heart attack inwalking through the trees and I was out beforeI hit the ground. Other than that, I thinkre all kind of bad.

Painless (n = 11) But I guess if you get a lot of pain l ike I had before, death would have been kind of a welcomewelcome sight because I was hurting pretty bad.

Without suffering (n = 5) Good death is like my buddy that I ran around with for many, many years . . . he woke here a couple

years ago, and he told his wife, you know, I feel kind of funny. And he went in, and he got down onhis knees . . . and died. Boom. Never suffered a day, never suffered an hour even.Peace with God (n = 3) I would say that a good death would be a death where you were sure that . . . youve made your

peace with God; youve made sure your familys taken care of, and theres no need to worry.Peaceful (n = 3) A good death? Well, to just leave this world in the peaceful manner, of course, naturally. I know that

Ill have pain and somewhata little suffering, but I can endure that if I just leave this earth wellthought of.

Without knowledge of impending death (n = 3) Go quietly in sleep, I guess. I think that would be the nicest way to go. . . . Well, I guess you dontknow it until you get there, you know.

Table 2. Components of Bad Deaths and Illustrative Quotations

Painful (n = 12) To be in severeultra severe pain under whether theres no control. . . . And it goes on and on and youcant control it or do anything about it . . . its just awful, awful. That to me would be the worst kind.

Prolonged (n = 11) Oh, to linger and drag on and take a long time. It would make it hard on people and everything. Peoplemore or less accept that youre going to die, but if you prolong it, it just makes it harder on them.

Dependent (n = 8) Being hooked up with those monitors and then laying there for days and stuff and you hurt; you cantcomplain, you cant do anything. Thats a bad way to go. I dont want that. Thats the reason I says noresuscitation.

Suffering (n = 7) And I really dont want to suffer, but Ive done a lot of that, and Im not totally afraid of it. . . . Well, goingto the hospital is suffering for me. And Ive been through some torture that I consider pretty terrible.

Burdening others (n = 5) If I were bedridden and had to have my wife and some other people take care of me, I wouldnt want tostick around a minute.

Drowning or shortness of breath (n = 4) Maybe, maybe before I lose all my breathing, some other organ will taketake me. And Ive prayedfor that.

Not right with God (n = 3) Not being withwith the Lord would be a bad death. Not being right in the Lord and with your family.




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[77%]) rated family as very important in their current

lives, fewer than half of these participants (10[45%]) alsorated the importance of family presence at the very endof life as very important. As one participant de-scribed, It would be nice [to have family present], butId hate to put them through it. Another commented,Ill travel the road myself. Participants views of dyingat home were heterogeneous. Although some preferredto die at home, many voiced concerns about the effectof this on their families. As one explained, If its a bur-den on my family, Id rather go elsewhere.

COMMENT

A primary goal of this study was to learn how terminally

ill men described good and bad dying experiences. Wefound heterogeneity in terminally ill mens views aboutgood deaths, bad deaths, and preferred dying experi-ences. The heterogeneity of views even extended to thereasons provided for how attributes contributed to thegoodorbad death.For example,dyingin onessleep couldlead to a good death because the dying individual wouldnot know that death was imminent or because the deathwould be painless. Prolonged dying could lead to a baddeath because it burdened the family or because the dy-ing individualwouldhaveprolongedpain. Suffering couldlead to a bad death because the dying individual was de-pendent on others or because that individual was in pain.Furthermore,ourstudy providesempiric evidence forthe

multifaceted nature of suffering as previously describedin theoretical discussions. 25,26 Finally, participants helddiffering opinions about preferred location of death andpresence of others at the very end of life.

Our results bear some similarities to previous stud-ies.5,15,27 Heterogeneity ofviewsaboutgood deathshasbeenfound in medical students 26 and persons with advancedAIDS.15 Four components of a good death (in ones sleep,painless,quick,andpeace with God) identified bypartici-pants in our study also were mentioned in a study of pal-liative carecancerpatients. 5 Thepalliative care patients also

identified the quiet (dignified) death and the death with-outfear or fatalism. Thecomponents ofa gooddeath iden-tified both in our study and a study of patients with ad-vanced AIDS15 were symptom control, quick, withoutsuffering, and in ones sleep. The patients with AIDS alsoidentified themes such as patient control of treatmentandroleof physician-assistedsuicide. Interestingly, some par-ticipants with AIDS explainedthatknowing thatdeath wasimminent contributed to a good death. In contrast, thosein our study who mentioned this theme believed the op-positethat a gooddeathoccurredwhen onedid notknowthat death was imminent.

In another qualitative study,Steinhauser et al 4 con-ducted focus groups with patients (with cancer or hu-man immunodeficiency virus infection), bereaved fam-ily members, and health care workers to describe gooddeaths. The issues contributing to a good death identi-fied in the study by Steinhauser et al 4 included pain andsymptom management, clear decision making, prepara-tion for death, completion, contributing to others, andaffirmation of the whole person. Only 1 theme,pain andsymptom management, was noted in our study.The dif-ference in issues identified between the study by Stein-

hauser et al4

and ours may beexplained, in part, bya dif-ference in perspective about what constitutes the end of life. The focus groups in the study by Steinhauser et al 4described experiences in the weeks and months prior todeath that contributed toa gooddeath.Those inourstudyidentified attributes of a gooddeath occurring at theveryend of life. The themes identified in the study by Stein-hauser et al 4 may also differ from ours because the workwas conducted within a research program entitled Pro-gram on theMedicalEncounterandPalliativeCare,whichmay have introduced a recruitment bias.

We also asked participants to describe a bad death.Participants in our study voicedconcerns about being de-pendent andburdeningothers. Payne et al 5 asked health

care workers this question, but not patients. Of the 7themes identified by the participants in our study andthe 5 identified by the health care workers in the studyby Payne et al,5 only 1 theme overlapspresence of un-controlled symptoms. The health care workers identi-fied different themes such as lack of acceptance and thedying person being young. This finding may lend cre-dence to previous studies, which have found that pa-tients, caregivers, and clinicians have different concernsregarding the end of life. 7-12

The closed-ended questions contributed addi-tional findings. Currently valuing family did not auto-matically translate into wantingfamilypresent at theveryendof life. Two participants in thepresent study, in fact,

stated that they wanted todie awayfrom their loved ones.This range of preferences about presence of loved onesat the veryend of lifehas beenpreviouslynoted witholderpatients 13 andpatients with AIDS. 15 Our participants didnotvoice a uniform preferred location of death. This het-erogeneity of preferred location of death has been notedpreviously in terminallyillpatients, 28 patientswithAIDS, 15and older patients. 13,29

Inaddition to thesimilaritiesto previousstudies, thereis further evidence that the results may be credible. First,we found consistencies between descriptionsof good and

Table 3. Importance Ratings of End-of-Life (EOL) Issues

NotImportant

A Little/ SomewhatImportant

QuiteImportant

VeryImportant

Family/friends incurrent life

0 1 4 20

Presencefamily/friends atthe very EOL

4 5 7 10

Religion/spiritualityin current life

5 4 1 16

Presence ofreligious/spiritualleaders at thevery EOL

6 7 4 8

Dying at home 5 6 5 6Dying in the

hospital13 6 1 2

Physical contactwith loved onesat the very EOL

2 9 5 8




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baddeaths. Theoppositesof several themesmentioned indescriptions of good deaths were noted in participant de-scriptions of bad deaths. A painless and quick death wasconsidered good, while a painful and prolonged deathwasconsidered bad. Dyinghavingmadepeace with Godwas considered good, and dying while not right withGod wasconsideredbad. Thisconsistencyindicates someinternalvalidityof theresults.Second,theprocess of theo-reticalverificationof theresults, inwhich2 experts inend-of-life research were asked to respond to the plausibilityof the preliminary results, indicates that the results have ameasure of external validity.

This study has limitations. First, the small studypopulation may limit the generalizability of the results.Theoretical saturation,however, wasachieved.The simi-larities between the themes found in our study and inprevious studies 5,13,15 indicate that our findings may begeneralizable, and help, in part, to validate the findingsof the previous studies in a different patient population.Second, participants knew that they would be talkingabout theendof life andall acknowledged that they wereseriously ill, introducing a potential for selection bias.Patients who are unaware of or in denial of the severityof their medical illness might offer different descrip-tions of goodand bad deaths. Third, because most of theparticipants were male veterans, the results should notbe extended to women, to nonveterans,and to those whoare not white or African American.

The results of this study have implications for cli-nicians caring for terminally ill patients. Because indi-viduals define good and bad deaths differently, clini-cians may want to ask each patient to describe each of these. To trulyunderstand a patients views about the endof life, the clinician will need to probe certain answersto find outwhat sufferingmeans to that individual, forexample. Clinicians may not want to assume that want-ing to avoid suffering equates to wanting to avoid pain.Clinicians may also want to ask patients about the pres-ence of others at the very end of life and preferred placeof death.

Once the clinician has obtained information abouta patients preferences for the end of life, the discussionthen can focus on how a patients clinical course may fitwith the stated preferences. Situations that might pre-clude a patient from being able to attain his preferreddeath, for instance, could be discussed and alternativeoptions reviewed. If a patient without family, who livesalone, states that a good death would be one in whichhe or she dies at home, the clinicians response might in-clude a reviewof alternative settings for care if adequatein-home care could not be arranged. Engaging in these

conversations before death is imminent may help pa-tients achieve a better quality of life while they are dy-ing and may reduce emotional stress on loved ones.

Accepted for publication June 20, 2003.This study was supported by a Pfizer/American Geri-

atrics Society Postdoctoral Fellowship and by The John A.Hartford Foundation, New York, NY.

This study was presented in part as a poster at the An-nual Meeting of theAmericanGeriatricsSociety; May 9-13, 2001; Chicago, Ill.

WethankJ.RandallCurtis,MD,MPH,and MaryErsek,PhD, RN (end-of-life researchers), for their thoughtful re-view of preliminary results and for reading drafts of themanuscript.We thankNathanielDavenport,MD, forhis helpwith data collection and Glenise McKenzie,MA,RN, for her help with coding.

Corresponding author and reprints: Elizabeth K. Vig,MD,MPH, VAPSHCSS182GEC, 1660 S ColumbianWay,Seattle, WA 98108 (e-mail: [email protected]).

REFERENCES

1. Lynn J, Teno JM, Phillips RS, et al. Perceptions by family members of the dyingexperience of older and seriously ill patients: SUPPORT Investigators: Study toUnderstandPrognosesand Preferencesfor Outcomes and Risksof Treatments.Ann Intern Med.1997;126:97-106.

2. Seale C, Cartwright A.The Year Before Death . Hants, England: Avebury/AshgatePublishing Ltd; 1994.

3. HansonLC, DanisM, Garrett J. What iswrongwithend-of-lifecare?opinions ofbereaved family members.J Am Geriatr Soc.1997;45:1339-1344.

4. Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA.In searchof a good death:observations of patients,families, andproviders. Ann Intern Med. 2000;132:825-832.

5. Payne SA,Langley-EvansA, Hillier R.Perceptionsof a gooddeath: a comparativestudy of theviews of hospice staff andpatients.Palliat Med.1996;10:307-312.

6. Emanuel EJ,Emanuel LL.The promise of a good death.Lancet . 1998;351(suppl2): SII21-DII29.7. Higginson I, Wade A, McCarthy M. Palliative care: views of patients and their

families.BMJ . 1990;301:277-281.8. McMillanSC, Mahon M. Measuring qualityof lifein hospicepatientsusinga newly

developed Hospice Quality of Life Index. Qual Life Res.1994;3:437-447.9. Field D, Douglas C, Jagger C, Dand P. Terminal Illness: views of patients and

their lay carers.Palliat Med.1995;9:45-54.10. Hinton J. Howreliable are relatives retrospectivereports of terminalillness?Soc

Sci Med . 1996;43:1229-1236.11. Kristjanson LJ, Nikoletti S, Porock D, Smith M, Lobchuk M, Pedler P. Congru-

ence between patients and family caregivers perceptions of symptom distressin patients with terminal cancer.J Palliat Care. 1998;14:24-32.

12. CoppolaKM,DittoPH,DanksJH,SmuckerWD. Accuracyofprimarycareandhospital-basedphysicianspredictionsof elderlyoutpatientstreatmentpreferenceswith andwithout advance directives.Arch Intern Med . 2001;161:431-440.

13. Vig EK, Davenport N, Pearlman RA. Good deaths, bad deaths, and preferencesfor the end of life: a qualitative study of geriatric outpatients.J Am Geriatr Soc.2002;50:1541-1548.

14. Pearlman RA, Cain KC, Patrick DL, et al. Insights pertaining to patient assess-ments of states worse than death. J Clin Ethics.1993;4:33-41.

15. Pierson CM, Curtis JR, Patrick DL. A good death: a qualitative study of patientswith advanced AIDS.AIDS Care . 2002;14:587-598.

16. Hoyert DL, Arias E, Smith BL, Murphy SL, Kochanek KD. Deaths: final data for1999. Natl Vital Stat Rep . 2001;49(8):1-113.

17. Reuben D, Mor V, Hiris J. Clinical symptoms and length of survival in patientswith terminal cancer. Arch Intern Med . 1988;148:1586-1591.

18. Stuart B.Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases . Arlington, Va: The National Hospice Organization; 1995.

19. Roccaforte W, Burke WJ,Bayer BL,WengelSP. Reliability andvalidity of theShortPortable Mental Status Questionnaire administered by telephone.J Geriatr Psy- chiatry Neurol . 1994;7:33-38.

20. Glaser B, Strauss A.The Discovery of Grounded Theory . New York, NY: AldineDe Gruyter; 1967.

21. Yesavage J. Use of self-rating depression scales in the elderly. In: Poon L, ed.Handbookfor ClinicalMemoryAssessment inOlder Adults.Washington, DC:Ameri-can Psychological Association; 1986.

22. Chochinov HM, Wilson KG, Enns M, Lander S. Are you depressed? screeningfor depression in the terminally ill.Am J Psychiatry. 1997;154:674-676.

23. Rosenfeld KE,WengerNS,Kagawa-SingerM. End-of-lifedecisionmaking: a quali-tative study of elderly individuals.J Gen Intern Med.2000;15:620-625.

24. Morse JM,FieldPA.QualitativeResearch Methodsfor HealthProfessionals . Thou-sand Oaks, Calif: Sage Publications; 1995:125-149.

25. CasselEJ.The natureof sufferingandthe goalsof medicine.N EnglJ Med . 1982;306:639-645.

26. Field M, Cassel C, eds.Approaching Death: Improving Care at the End of Life .Washington, DC: National Academy Press; 1997:26.

27. McCormick TR, Conley BJ. Patients perspectives on dying and on the care ofdying patients. West J Med. 1995;163:236-243.

28. TownsendJ, FrankAO, Fermont D,et al.Terminal cancercareand patientspref-erence for place of death: a prospective study.BMJ. 1990;301:415-417.

29. Fried TR, van Doorn C, OLeary JR, Tinetti ME, Drickamer MA. Older personspreferences for site of terminal care.Ann Intern Med . 1999;131:109-112.



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