Vol. - No. - - 2013 Journal of Pain and Symptom Management 1

Original Article

Contending With Advanced Illness: Patientand Caregiver PerspectivesMary Ann Meeker, RN, DNS, Deborah P. Waldrop, MSW, PhD,Jaclyn Schneider, MD, and Amy A. Case, MDUniversity at Buffalo, The State University of New York (M.A.M., D.P.W., J.S., A.A.C.); and VA

Western New York Healthcare System (A.A.C.), Buffalo, New York, USA

Abstract

Context. Despite improvements in end-of-life care, some unrelieved suffering

persists for patients with advanced illness and their family members. Hospice andpalliative care services can reduce suffering, but these services remain under-used.

Objectives. To investigate how patients with advanced illness and their primarycaregivers experienced and responded to health care needs and decision makingand how some dyads moved toward comfort-focused care.

Methods. This was a qualitative study using the grounded theory method forsample selection, data collection, and analysis. Dyadic semi-structured interviewswere audio-recorded and transcribed for analysis. Twenty-two participants, 12patients and 10 family surrogates, provided 16 interviews for this study.

Results. Participants engaged in a process of contending with advanced illness.The major phases comprising this process were suffering, struggling, and settling.Struggling included enduring the experience and fighting the illness. During thephase of settling, the focus shifted away from curative efforts and towardsupportive care. Conditions that facilitated the movement into this phaseincluded receiving clear and consistent information about the patient’s healthstatus, trusting health care providers, having attended to advance care planning insome form, and being aware of and able to acknowledge the terminal nature ofthe illness.

Conclusion. Findings from this pilot study offer a preliminary theoretical modelto enhance the understanding of patient and family caregiver needs duringadvanced illness. Awareness of their perspective can inform the timing andcontent of clinicians’ communication and interventions. J Pain SymptomManage 2013;-:-e-. � 2013 U.S. Cancer Pain Relief Committee. Published by ElsevierInc. All rights reserved.

Key Words

Advanced life-limiting illness, grounded theory, transition, palliative care

Address correspondence to: Mary Ann Meeker, RN,DNS, School of Nursing, University at Buffalo, TheState University of New York, 3435 Main Street,

Wende Hall 303, Buffalo, NY 14214, USA. E-mail:meeker@buffalo.edu

Accepted for publication: June 22, 2013.

� 2013 U.S. Cancer Pain Relief Committee.Published by Elsevier Inc. All rights reserved.

0885-3924/$ - see front matterhttp://dx.doi.org/10.1016/j.jpainsymman.2013.06.009

2 Vol. - No. - - 2013Meeker et al.

IntroductionDespite improvements in end-of-life care

over the past two decades in the U.S., some un-relieved suffering persists for patients with ad-vanced illness and their family members.1

Moreover, Trask et al.2 found that 40% of thosewho died from cancer experienced distressingpain at their last place of care. The continua-tion of cure-focused interventions even whenthey have little potential for success can con-tribute to unrelieved suffering. Undesired ag-gressive treatment also contributes to highhealth care expenditures at the end of life.3e5

The physical, psychosocial, and spiritual suffer-ing that can accompany the end stage of lifecan have a major impact on family caregiversand also can affect their adaptation inbereavement.6

Within developed nations, palliative care ser-vices have been found to improve patient andfamily outcomes,7 and hospice has emergedas a model for the provision of optimal end-of-life care.8 Although hospice and palliativecare services can reduce suffering, these ser-vices remain under-used. Despite eligibility fora specialized hospice insurance benefit forthose with a life expectancy of less than six-months, it is well known among palliative careproviders and researchers that most terminallyill persons do not initiate comfort-focusedcare until very late in the dying trajectory. Inthe U.S. in 2011, nearly 36% of patients usinghospice care received services for fewer thanseven days. The median length of service hasbeen decreasing in recent years and was19.1 days in 2011.9

Communication about the end of life remainsa highly charged and difficult aspect of patientcare.10e13 Suffering may remain unaddressedwhen patients, family, and providers have diffi-culty discussing the dying process openly andfrankly. Physicians tend to emphasize medicaland technical information and to neglect emo-tional aspects of the interaction.14 Familiesalso often avoid discussions that are painfuland emotional.15 Family caregivers have beenfound to need guidance about end-of-life careand to benefit from earlier education aboutthe practical, technical, and emotional dimen-sions of end-of-life caregiving.16

The transition to the final stage of life is inher-ently difficult and largely understudied.17e19

Painful encounters with fear, loss, and a senseof powerlessness are common.13,18 Understand-ing how a patient-caregiver dyad experiencesthis transition can help clinicians developgreater capacity to support them during thismeaningful but difficult time period. Enhancedclinicianunderstanding also can limit unwantedaggressive care and contribute to adaptation inbereavement.6,20 The purpose of this study wasto explore patients’ and caregivers’ experiencesand perspectives as they responded to advancedillness and, when relevant, transitioned tocomfort-focused care.

MethodsA qualitative approach was chosen to investi-

gate the subjective experiences andmeaning ofadvanced illness for patients and their familycaregivers.21 The study was conducted in col-laboration with the inpatient palliative careconsultation service of an urban Veterans Ad-ministration Medical Center in the Northeast-ern U.S. We recruited a purposeful samplecomprising dyads that included hospitalizedadult patients who met the disease-specifichospice eligibility criteria as published by theNational Hospice and Palliative Care Organiza-tion22 but who had not chosen to focus on com-fort care or elected hospice services or had onlydone so within the past week. Initial screeningfor eligibility was performed by the palliativemedicine physician when a palliative care con-sultation was requested. In this setting, requestsfor consultation were made primarily by medi-cal residents and hospitalists. The study in-clusion criteria for patients were as follows:a diagnosis of any life-limiting illness that wassufficiently advanced as to qualify for hospicecare and the ability and willingness to commu-nicate verbally about their experiences and per-ceptions. The exclusion criterion was anycognitive impairment, such as delirium, de-creased responsiveness, or profound weaknessthat precluded meaningful conversation.After determining eligibility and eliciting

the patient’s permission, the palliative physi-cian provided each interested patient witha written description of the study and providedthe researchers with the patient’s name andhospital room number. A researcher then

Table 1Participant Demographic Characteristics

Descriptor Patients Caregivers

Number ParticipatingMale 9 2Female 3 8

Age (years)Range 52e86 23e73Mean 63 52

EthnicityBlack 2 2White 10 8

Role relationship of caregiver to patientSpouse 3Adult child 3Other 4

Vol. - No. - - 2013 3Contending With Advanced Illness

visited to discuss the study and invite participa-tion. The family member most closely involvedin health care decisions with each patient alsowas recruited. Patients contacted their familymember or gave the researcher permission todo so. The study was approved by the univer-sity and medical center institutional reviewboards.

After written informed consent was provided,we conducted face-to-face, semi-structuredinterviews, which were audio recorded. Inter-views took place in the patient’s hospital roomor in a private family room on the hospitalunit. Whenever possible, interviews were con-ducted jointly with the patient and familymember. Data collection was intended to be re-flective of the patient’s manner of health caredecision making. Thus, when a patient had noinvolved family member, the interview was con-ducted with the patient alone. These patients(n ¼ 3) were making all of their health care de-cisions independently rather than with supportor consultation from an involved family mem-ber. In one instance, the patient became toosick to participate in a scheduled interview,but the family member was at the hospital andasked to provide the interview alone. We at-tempted to conduct follow-up interviews withintwo weeks after the initial interview. Because ofrapidly changing health status for our partici-pating patients, we were only able to conductfollow-up interviews with three patients.

Interviews lasted 55 to 90minutes. The audiorecordings were transcribed verbatim and veri-fied by the researchers, and the resulting textswere analyzed using the constant comparativetechniques of grounded theory.23 Analysis in-cluded open coding, category developmentand description, and theoretical modeling.ATLAS.ti v. 5.7.1 (ATLAS.ti Scientific SoftwareDevelopment GmbH, Berlin, Germany) wasused to assist in organizing and managing thedata set. The rigor of the qualitative data analy-sis was enhanced by prolonged engagementwith the data and the use of memos and anaudit trail to document decisions made duringthe iterative analytic process.23,24 The analyticprocess also was strengthened by discussionabout concepts and conceptual relationshipswithin the data set and the development ofconsensus among the members of the researchteam, whose disciplinary backgrounds includedmedicine, nursing, and social work.

ResultsWe conducted 16 semi-structured interviews

with a total of 22 participants, 12 patients and10 family surrogates. Ten of the participatingpatients had advanced cancer, one had ad-vanced heart disease, and one had end-stagerenal disease. Table 1 shows participant charac-teristics. Four potential participants declinedafter initial researcher contact. Six others ex-perienced a change in health status betweenthe initial meeting and the time of the sched-uled interview (usually about 24 hours) suchthat they were no longer able to participate.

During the interviews, we first asked partici-pants to talk about the current hospitalizationand the events that had led to it in order toelicit their understanding of diagnosis, currentstatus, and treatment options. Subsequentquestions focused on their experiences withhealth care decision making, including valuesand interactions. We explored their ideasabout palliative care and its meaning.

A model was developed that describes theprocess of contending with advanced illness.The major phases comprising this process aresuffering, struggling, and settling. Open cod-ing generated 86 distinct codes, which, duringconstant comparative analysis, were inductivelygrouped into categories. Ongoing within-caseand across-case analysis was conducted to char-acterize both the categories and the relation-ships between them. For example, sufferingwas universal among the study participants, oc-curred in diverse forms (yielding subcategoriessuch as reciprocal suffering and propertiessuch as loss of/change in identity), and tendedto be the starting point of participants’

4 Vol. - No. - - 2013Meeker et al.

narratives. Table 2 provides an illustration ofcategory development. The process of con-tending with advanced illness was commonlyrecursive rather than linear. As health statuschanged or a new crisis arose, suffering andthe need to respond recurred. Each phase ofthe process (Fig. 1) is described and illustratedwith participants’ words.

SufferingSuffering included the physical, emotional,

and spiritual distress that accompanies ad-vanced life-limiting illness. Our study partici-pants had all encountered a crisis that resultedin their hospitalization. Patients and theircaregivers reported both unique and sharedforms of suffering.

Patients’ suffering included the distressingsymptoms common in advanced illness, in-cluding pain, dyspnea, and weakness. For onepatient, pain from tumor impingement onhis spinal cord was excruciating, and providerswere slow to achieve adequate treatment. Atthe time of the interview, his pain was being ef-fectively managed with intravenous analgesia.He remarked, ‘‘Yeah. I lived for a week withhardly anything [to manage pain].. I do notknow how I mentally went through that.’’

Caregiver suffering was exacerbated whenthe care situation became unmanageable,with demands exceeding resources. One fam-ily member remembered the difficulty of seek-ing care for her mother and being pressed byemergency department providers to consentto limitations of treatment. Desperate for assis-tance, she reported reaching a point of beingwilling to agree to anything, ‘‘I do not know

Table 2Illustration of Analy

Participant Quote C

‘‘Right at the moment I just want to get through theradiation thing and get over this nauseous feeling.It’s hard to concentrate on things.’’

Symp

‘‘A lot of people are willing to give up and say, ‘I hadenough; I just want to go,’ but I do not want to dothat. I believe I’m a fighter, and I’m going to fight.’’

Choo

‘‘I know I am not going to get better and that the canceris not going to go away.’’

Aware

‘‘I just have to learn that it doesn’t matter if I do not domy laundry today and tomorrow if I do not feel likedoing it. It doesn’t matter. I can do that. I have tounderstand that part of it and do that so that I’mnot.pushing myself.’’

Adjus

what I mean anymore, she’s very sick and shecannot go home like this, and it’s whateveryou want me to say right now.’’ Thus, sufferingarose from diverse facets of the illness experi-ence and created the context within which par-ticipants responded to their situation.

Shared Forms of Suffering. Both patients andcaregivers were vulnerable to fear, loss, anda sense of powerlessness. One participant,whose wife had been recently diagnosed withadvanced lung cancer, described an increasingintensity of bad news as her anticipated life ex-pectancy became shorter and shorter; he ac-knowledged his powerlessness,

‘‘We had our meeting yesterday with thedoctors. it (prognosis) went from 2 yearsto a year and now we’re down to the weeksand months, which is pretty hurtful, ac-tually.. I personally think they could havedone more, but it’s too late for that.’’

Another form of suffering reported by bothpatients and caregivers was the threat to theirsense of self and identity that arose from theirexperiences of illness and caregiving. One par-ticipant undergoing treatment for a brain tu-mor suffered from a nebulous sense ofaltered identity. ‘‘I cannot put my finger on itbut I know I’m different. But I just do notknow what’s missing. That was me before that’snot here anymore.’’Caregivers also sometimes suffered from

a changed sense of self. One caregiver, havingbecome overwhelmed by difficult care for herfather, reflected that ‘‘My family all say I’vechanged. They were telling me, ’We do not

tic Process

onceptual Label (Code)Category in Which

This Code Was Included

tom distress Suffering

sing to live/choosing to fight Fighting

ness of terminality Settling

ting to limitations

Fig. 1. Process of contending with advanced illness.

Vol. - No. - - 2013 5Contending With Advanced Illness

even like you anymore.’’’ Thus, patients andcaregivers both suffered from emotional dis-tress and an unstable sense of identity.

Reciprocal Suffering. Each member of the dyadalso found his/her own suffering exacerbatedby the suffering of the other. Reciprocal suffer-ing25 was particularly intense for spousaldyads. Although each participant was encoun-tering a difficult situation that increased his/her own need for support, his/her primarysupport person was potentially much less avail-able. As described by one wife,

‘‘Neither one of us could articulate to theother what our level of difficulty was becauseI didn’t want to burden him with what I’mfeeling, and he certainly was going throughhis own.so he probably didn’t want to dothe same for me, either.’’

StrugglingIn the second phase of the process, patients

and caregivers engaged with the illness situa-tion and endeavored to find a meaningfuland useful way to respond. During the phaseof struggling, some participants primarily en-dured their situation, whereas others focusedon fighting. Enduring, a more stoic and pas-sive response, sometimes occurred by itselfduring the struggling phase, but for others itoccurred simultaneously with fighting. Oneof the strategies participants used during thisphase, whether to endure or to fight, was nar-rowing their focus to only the next immediatechallenge. They would deliberately attend toone concern at a time to help make their situ-ation manageable.

Enduring. Enduring was characterized by onecaregiver as you just ‘‘buck it up.’’ There was

a sense of emotional armoring, of doing whatone must, of holding on to get through theday. One caregiver said she was ‘‘trying to holdon as long as I can.’’ She would not consent tocomfort-focused care unless her brother’s suf-fering became intolerable. Another caregiverlinked enduring to military training.

‘‘It was a war, so then you know what we, assoldiers and vets, what we do. We put onour military bearing and we do it. We gothrough it. And that’s exactly how I wasable to cope. It’s like boom, you know, yougo numb. You turn off your emotions andyou’ve got to get things done.’’

Fighting. For some, struggling in response tothe illness was characterized by fighting the ill-ness as actively and aggressively as they could.Fighting appeared to be an all-encompassingdecision that automatically dictated future de-cisions. One dyad commented as follows:

‘‘I think that’s very important. I think a can-cer patient has to be a fighter. He’s got tofight. And he’s got to have the circle offriends and family there to fight for him.So that’s real important.’’

His wife commented, ‘‘It hasn’t been easy.It’s been very hard, but if he thought that Igave up on him, then that would be. whichI never would do that. I would never. I willfight till the dying end to keep fighting andfighting.’’

It was common among our participants toview the pursuit of any and all possible treat-ments as a choice to live, and any limitationsof treatment as a choice to die. Decisionmakingwas simple andbinary: treat or die. For example,one patient was questionedduring the interviewabout whether he had been asked to make a de-cision about having chemotherapy. He re-sponded simply, ‘‘A mild one [decision], yeah.I decided to do that because if I do not, I’ll die.’’

Those focused on fighting typically useda strategy of ‘‘staying positive.’’ Staying positiveoccurred on a continuum from defensive (andseemingly fear-filled) positivity to a more nu-anced stance. One caregiver instructed the re-searcher before agreeing to an interview thatthere must be no mention of words such ashospice, dying, or palliative care in front of

6 Vol. - No. - - 2013Meeker et al.

her husband. During the interview, she elabo-rated on her beliefs,

‘‘I think if you keep yourself having very pos-itive thoughts, very positive thoughts, thatmakes you move on to the next day. Wehave a motto, and we’ve had it from dayone, that you take it one day at a time andalways think positive, always.’’

Advocating for the patient’s needs was the pri-mary caregiver strategy for dyads engaged infighting the illness. One daughter, when askedwhat advice she would give to other familymem-bers facing the kinds of challenges she and herill father were encountering, recommendedbeing proactive as an advocate,

‘‘I would say to make sure you ask a lot ofquestions. If there [is] something you’renot sure about, make sure you ask. Don’twait for them to tell you, because they mightnot. Make sure you ask and just be around asmuch as you can to find out.’’

Thus, struggling in response to the ad-vanced illness included enduring the inevita-ble suffering and for some a commitment tofighting the illness as aggressively and relent-lessly as possible.

SettlingFor some participants, a third phase of con-

tending with advanced illness was settling intocomfort-focused care. In sharp contrast tothose in the struggling phase, the narrativesof these patients and caregivers reflecteda greater sense of ease and acceptance. Someparticipants were no longer receiving curativetreatments because none were offered or avail-able; however, these participants did not neces-sarily experience settling. Some remained inthe phase of enduring. For example, one oldergentleman with multiple and complex healthproblems was terrified of dying and insisted

Table 3Facilitators/Conditions for Enter

Dyad transition to comfort-focused care is facilitated when both:Receive clear and consistent health status informationTrust providersAcknowledge that the illness is terminalEngage in advance care planning/discussion of wishesHave support: social and spiritualTransition is facilitated when patient can:Accept a changed identityFocus on the possible

that every possible attempt be made to prolonghis life. His daughter reported an emergencyroom visit during which the nurse had askedher about his advance care planning. ‘‘Heheard us talking.and he screamed from theother room, ’Yes, keep me alive! Yes!’.. Hehas a real fear of dying. He does not want todie.’’Several conditions facilitated the movement

into settling, the phase in which the focusshifted away from curative efforts and towardsupportive care and emphasis on quality oflife. These conditions were receiving clear andconsistent information about the patient’shealth status, trusting health care providers,having attended to some form of advance careplanning, and being aware of/able to acknowl-edge the terminal nature of the illness (Table 3).Receiving clear and consistent information

about health status and planned care was themost important property that engenderedtrust in providers. Most patients and caregivershad little experience of being asked to makedecisions about their care. Surprisingly, noneexpressed distress over this model, but thosewho felt they could not get clear informationor who perceived that they had received bla-tantly contradictory and conflicting informa-tion from different providers did expressconsiderable distress.Clear and consistent health information was

also the linchpin to a patient’s capacity to be-come aware that he/she was dying, a conditionshared by those who transitioned to comfort-focused care. One patient identified his mostpressing concern as needing clear and con-crete information, ‘‘At least I want to knowwhat the prognosis is, how long I’ve got andwhat I do from that point on with my familyand everything.’’Seemingly inconsistent information from

various providers blocked awareness of termi-nality.When patients heard what they perceived

ing the Phase of Settling

And caregiver can:See patient not sufferingHonor the patient’s wishes

Vol. - No. - - 2013 7Contending With Advanced Illness

as different information from different pro-viders, they grasped on to the more positiveover the more dire assessment of their condi-tion as they understood it. One participant re-ported being shocked by a limited prognosispresented by a new physician.

‘‘I had never even met her; she just cameright up to me. She said I’m on your team,which was fine, and we shook hands. Shesaid yeah, I’m pretty sure we can get youabout a year.and I called her up (referringto his caregiver daughter) and I said you’renot going to believe what they just toldme.. I never heard a negative from any ofthe other doctors. They’re all positive.’’

Those patients who settled into comfort-focused care used important personal valuesto guide their response to the illness and to ex-press their personhood. During the settlingphase, patients and caregivers tended to focuson relationships, getting things in order, andquality of life. Energy that had been investedin enduring and fighting was redirected to-ward accepting a changed identity. As reportedby the daughter of a fiercely independentman, ‘‘His main thing is do not prolong lifeif he cannot do things for himself, but hewants also to be comfortable.’’

When the patient had shifted to comfort-focused care, the primary values expressedby caregivers were respect for the self-determinationof their familymemberandbeingassured that he/she would not suffer. One ofthe patients had engaged in advance care plan-ning discussions with her family, and her wishesguided the plan for comfort-focused care.

‘‘She makes her own decisions. She’s alwayssaid do not let me linger or be in pain, soit’s up to her. Those kinds of decisionsshe’s clear on, so we do not argue. Thereare five of us and we argue about enoughother stuff, but this is her life.’’

Settling represented a significant stage onthe illness trajectory and in the dyadic re-sponse to the terminal illness.

DiscussionWe investigated the dyadic experience of

advanced illness and explored the process of

transition to comfort-focused care. Our pre-liminary theoretical model of contending withadvanced illness is grounded in the first-handreports of patients and their primary caregiversand decision makers. Our participants richlydescribed a process that encompassed phasesof suffering, struggling, and settling. Duringstruggling, all showed evidence of enduring,and some chose to emphasize fighting the ill-ness. Narratives revealed several conditionsthat facilitated a patient’s transition tocomfort-focused care, as described in the phaseof settling.

We do not assume that a transition tocomfort-focused care is the best choice for ev-ery patient with advanced life-limiting illness.However, given the data that indicate relativelylate hospice enrollment, unrelieved sufferingat the end of life,1 and the discrepancy be-tween the numbers of Americans preferringto die at home and those who do,26 it is clearthat important care needs go unmet formany. Understanding the process of transitionfrom cure-focused to comfort-focused carefrom the perspective of patient-caregiver dyadscan inform provider actions to assist those forwhom a transition to comfort care is the bestchoice.

Our experience in conducting this studyconfirms how difficult it can be to conductin-depth interviews with patients with ad-vanced illness.27 The patients we recruitedwere medically fragile, often with rapidlychanging status. A patient could agree to an in-terview scheduled for the next day when thesurrogate also could participate and then losedecisional capacity or experience symptomexacerbation before the interview could beconducted. Nevertheless, understanding theneeds and perspectives of patients with very ad-vanced illness and their family members is crit-ical to the provision of sensitive and effectivecare. Those patients who were able to partici-pate in an interview welcomed the opportunityto be heard, validating others’ experiences inconducting end-of-life studies.28

The study findings should be considered inthe context of its limitations. First, the studydata set, although adequate for a grounded the-ory study,21,23 is modest. The study was explor-atory, and patients were at different stages oftransition. Our model of how patients and care-givers navigate the transition to comfort-focused

8 Vol. - No. - - 2013Meeker et al.

care is preliminary. We studied a specializedpopulation in onemedical center. The VeteransAdministration health care system has featuresthat are distinct from other American healthsystems.

Additionally, it is possible that our partici-pants had a stronger propensity to relentlesslyfight the illness because of their military back-ground. Clearly revealed in our interviews wasthe patient perception, often unchallenged oreven supported by providers, that they couldchoose whether to live or die. We believe thisreflects a widespread cultural phenomenoncharacteristic of American individualism andemphasis on self-determination. Medical sci-ence has accomplished so much toward savinglives and transcended so many limits that it be-comes difficult to reconcile with situations inwhich those limits remain. Providers have a re-sponsibility to be both clear and compassion-ate in delivering information about limits ofcure and meaningful life extension. Beingable to come to terms with dying opens oppor-tunities for growth at the end of life that areotherwise missed.29 Continued theoretical de-velopment of the model through the study ofadditional patients and caregivers from othersettings as well as through incorporating theinsights of clinicians will support targetedand skillfully timed interventions to assist pa-tients and caregivers as they contend with ad-vanced illness.

Disclosures and AcknowledgmentsWe gratefully acknowledge funding pro-

vided by The Palliative Institute of the Centerfor Hospice & Palliative Care, Cheektowaga,NY, and the expert consultation provided byMary Ann Jezewski, RN, PhD, FAAN, ProfessorEmeritus.

None of the authors has a conflict ofinterest.

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