FINAL RESEARCH PROJECT SOC 301

Hospice Volunteers and Grief:Contrasting Models of Care and Approaches to Death

Joseph Carlos MiroUniversity of Southern MaineProfessor John E. BaugherSOC 301 – Qualitative Research MethodsMay 24th, 2014

Abstract

This research paper draws on ethnographic data to understand how thedeterminants of grief can influence the various emotional responses hospicevolunteers express and experience in the wake of a patient they once cared forthrough the dying process. The analysis illuminates how the Hospice movementhas used a series of binary constructs to acquire axiological dualities to maintainthe dualistic order to legitimize the purported abdications of Western medicine.The deconstructions of Western medicine are contingent on abductive reasoning,rhetorical links and relations, and epistemological presuppositions to reupholsterthe target problem inherent to its antecedent. The analysis points to paradoxesin narrative slippage and the ensuing interplay of discursive practices that reveala failure of coherence to the integral presuppositions to the Hospice lexicon ofdiscourse. Organizational, post structuralism, existential phenomenology,narrative composition theory, and social psychology theory are drawn on toaccount and comprehend the abovementioned findings.

Keywords: detached concern, death anxiety, emotionalattachment, death awareness, self-affirmation, self-integrity, narrative slippage, identity status, grief work,hospice volunteers, hospice

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Hospice Volunteers and Grief: Contrasting Models of Care and Approaches

Hospice’s induction and subsequent proliferationthroughout the United States during the early 1970’s waswidely attributable to each of the following respectivereasons: (1) the burgeoning dissention towards Western‘traditional’ medical paradigm (Mor 1987) and (2) Congress’s1982 provision of the Medicaid hospice benefit (Jennings2003). The inception of hospice was widely premised on aplatform that criticized Western medicine for its purportedabdication to provide dying patients with dignity orcompassion (Jennings 2003); thus, Western medicine wascharacterized as dehumanizing (Fox 2012) due to its ossifiedpractices of medicine inherent to a fundamentally antiquatedstructural framework of healthcare (Franco 1983). Inresponse hospice decreed itself as a comparable alternativeto professionalized medicine that would mitigate theostensibly detrimental life-prolonging procedures associatedwith curative care. Furthermore, hospice proponents alsoasserted that Western medicine perpetuated America’sxenophobia of death and the pejorative connotation it hadwith dying.

Hospice proposed it would achieve its goals byfostering caregiving practices that obtained an enhancedattunement to the physical, emotional, and spiritual needsof its patients. Hospice surmised that a “care not cure”approach would best provide families, caregivers, and itspatients that were terminally ill with a sense of comfort,dignity, and emotional support (Jennings 2003).Subsequently, hospice would operationalize this initiativevia treatment modalities that aligned with palliative care –or “alleviating without actually curing”. The team of careproviders that would be assigned to each patient comprised

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of a multidisciplinary congregation of Western medicineprofessionals that offered patients a plethora of resources(i.e. a treatment plan led by an M.D, a nurse assistant, asocial worker, a personal aid, and both a chaplain and/orvolunteer if desired). This sought to increase thelikelihood of terminally-ill patients maintaining theirsense of morality during the care process (Levy 1981). Giventhe essential nature to uphold this “whole body” commitmentof patient care for the terminally-ill, the salience of thesocial rather than the physical is vital to the successfulfulfillment of this pledge (Jennings 2003).

This research paper draws on ethnographic data tounderstand how the determinants of grief can influence thevarious emotional responses hospice volunteers express andexperience in the wake of a patient they once cared fordying. The analysis illuminates how the Hospice movementhas used a series of binary constructs to acquireaxiological dualities to maintain the dualistic order tolegitimize the purported abdications of Western medicine.The deconstructions of Western medicine are contingent onabductive reasoning, rhetorical links and relations, andepistemological presuppositions to reupholster the targetproblem inherent to its antecedent. The analysis points toparadoxes in narrative slippage and the ensuing interplay ofdiscursive practices that reveal a failure of coherence tothe integral presuppositions to the Hospice lexicon ofdiscourse.

SELF-AFFIRMATION, GRIEVING, AND COMPASSION

The Hospice movement can most aptly be characterized asan antithetical alternative to Western culture and medicalpractices that considered its prevention to prolong life outof “medical necessity” to be fundamentally unethical(Strauss & Glaser 1970). It was also postulated that such anemphasis on curing tended to make professionals insensitivetowards their patient’s level of suffering, feelings of

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discomfort and/or isolation, and the overall apprehensionendured throughout the treatment process (Cage & Hammond2012). Cage and Hammond (2012) also posit that approachessuch as “emotional attachment” have often been unwelcomed byWestern discourses of medicine because it poses itself as athreat to the identities of medical practitioners as the“masters of fighting death”. Therefore, the argument hasbeen made that because preventing death is the salientmeasure for assessing success or failure, medicalpractitioners are believed to prioritize preventing death byany means necessary first to maintain their heroicconception of social status; henceforth, the argumentpurports that medical practitioners are presumably morelikely to dismiss or outright discard the needs, desires,and comfort of their patients while doing so (Cage 2012).The residual and sequential implications of these ostensiblyadversive care modalities are that professionals, families,and patients do not have sufficient training in “grief work”to cope with death on their own nor is there ready access todeath bereavement support groups and counseling to assistthose enduring prolonged periods or immense levels of grief.The medical model’s school of thought is constructed in sucha manner that it teaches and trains current and prospectiveprofessionals to employ an attitude of “detached concern” withpatients, this constituting a harmonious balance of bothcompassion and social distancing. This orientation towardsthe patient-caregiver dyad is reinforced with additionalstrategies like the “mechanisms of adjustment and defense”. Theobjective is to teach professionals the importance ofcircumventing “emotional attachment” to the patients whom theyare charged with caring (Fox 2011:945).

It was essential to describe the reductivecharacteristics that are used in hospice framing tocharacterize the medical model as a problem target (or thenecessary sum parts to make the medical model an antecedentthat leads to the hospice solution) before drawing on thePervasive Psychology of Self-Defense Theory to devise a

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relatively applicable parallel between Western medicine andhospice. Consider firstly Milton Rokeach’s 1973 address tothe United States Congress when he critiqued America of itsaggrandized conception of itself as being a compassionatenation (detached concern); (Coben & Sherman 2014). Americaviewed this attack as a “psychological threat” (medicalpractitioner’s identities as the master’s of death) whichconsequently aroused American “defensive adaptions” (mechanismsof adjustment and defense) since it questioned AmericanExceptionalism (self-integrity) and sought to recapture itsreputation as a wholesome and an efficacious society (self-affirmation theory) by adopting the Civil Rights Movement(Tugade & Fredickson 2004). Steele (1988) delineates how“psychological threats” can present themselves as a barrierfor long-term “adaptive change” in society. To prevent suchhindrances, Elder and Wilson (2011) accentuate the need for“adaptive control” interventions (death awareness) that disarmperceptions of psychological threats (death anxiety) byaffirmation-induced interactions between the perceivedpsychological threat (Hospice) and itself (Westernmedicine). This is thought to invent a new series of“reciprocal and reinforcing” interactions between the self(hospice volunteers, Americans) and social systems (Americanculture, Western medicine practice) that propagate “adaptiveoutcomes” (“producing and transmitting cultural norms,beliefs, and practices around death and dying”) (Fox2012 :960) that eliminate past “recursive cycles” (“the culturalnorms, values, and practices produced and transmitted arounddeath and dying in current mainstream Western medicine”)(Fox 2012:960).

Research has consistently shown ample evidence thathospice volunteer’s level and intensity of grief in theaftermath of a patient’s death is contingent on thatvolunteer’s success and engagement in “grief resolution” (S.Bluck et al. 2007). To further explicate the degree ofpertinence these contrasting orientations of caregiving haveon influencing people’s perspective of death and grieving, I

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draw on Amenta’s (1984) study of “death anxiety” thatconsisted of forty-two trained hospice volunteers;extracting ideals from Frankl’s (1959) work where sheapplied the concepts fortifying the invention of the TemplerAnxiety Scale and Crumbaugh and Maholick’s Purpose of LifeTest mining whether or not these two variables shared anassociation. The results indicated that hospice volunteerswho scored high in purpose of life also scored low in deathanxiety; hence, those who were more actively engaged withfacing their own death were more comfortable in caring forthe dying. This association reinforced the nexus between“death acceptance” and their higher levels of “death awareness”(Callanan & Kelley, 1992). Conversely, those who testedhigher in levels of death anxiety were found less likely toachieve self-actualization and “death concern” (Levy 1981).This too is also captured in a statement made by Kubler-Rossin 1975, “I am convinced that these experiences with thereality of death have enriched my life more than any otherexperience I have had” (S. Bluck et al. 2007:524).Therefore, the way hospice volunteers grieve over theirpatient’s deaths will be for the purpose of this researchpaper understood in terms of what hospice volunteer’s levelof death anxiety, death acceptance, development in self-actualization, experiences with death, exposure to thedying, and ability to afford patients who are dying withcompassion.

Volunteers at hospice are expected to reduce theiranxieties of death in order to compassionately care for thedying. To test the association between these two variables,Robbins (1992) conducted a similar study using a much largertheoretical sample that consisted of 248 hospice volunteers.Using the revised Templer/McMordie Death and Anxiety Scaleto measure if there was a significant association foundbetween volunteer’s levels of death anxiety and their levelof sense of purpose in life, the study revealed arelatively strong and positive association that wasstatistically significant which confirmed Hospice volunteers

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who ranked higher in levels of self-actualization were morelikely to have lower levels of death anxiety; hence,reinforcing the notion that “death acceptance” leads to“death awareness” (Callanan & Kelley 1992). Conversely,those who tested higher in levels of death anxiety werefound less likely to achieve self-actualization and possess“death concern” (Levy 1981). These findings in theliterature will be used to analyze the findings in theethnographic data as it relates to narrative slippage.

METHODS AND DATA

In January 2014, I enrolled in Sociology’s QualitativeResearch Methods course at the University of Southern Maineuntil May 28th, 2014. The method of data collection wascarried out by Professor John Eric Baugher who conductedsemi-structured in-depth interviews for ethnographic fieldresearch with nine different Hospice volunteers. Thevolunteers were from four different hospice locations(Joseph Richey, Zen Hospice Project, Silverado, and HospiceInc.).

The questions in the interviews were primarily focusedon what influenced them to begin volunteering, what were thepositive and negative aspects of volunteering, includingproviding examples for each relative question, ifvolunteers had gained or learned anything about themselvesin their work at hospice; including what their strengths andweaknesses might be, what/if there were particular event(s)or experiences that really stood out to them, whether theywere reluctant or disclosing of their hospice volunteeringposition or experiences to friends and family members, ifthey were affiliated with a religion or had a spiritualconnection; and if so, what role did it play for them inrelation to their volunteer work with the dying.Additionally, due to Professor Baugher’s experience as ahospice volunteer, the interviews were overall reflexive andfostered a good deal of insight and data; he also was well-

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skilled at formulating individual specific questions on thespot to elicit a further extrapolation of a previous saidstatement. This was accomplished due to the Professor’sattentiveness and attunement to subtlety in nuance andsubtext that might not otherwise been realized to the layresearcher unfamiliar with the discourse and jargon ofhospice.

After the audio recorded interviews were completed,they were subsequently transcribed verbatim; volunteer’sconfidentiality was protected via assessing pseudonyms totheir actual names. The demographics of the research samplecomprised of six women between the ages of thirty-five andmid-eighties. The three men were between the ages of sixtyand seventy-seven. The research subjects identifiedthemselves as all being middle-class and predominantlywhite. Three volunteers were unemployed, two were employed,and four were retired. Volunteers identified themselves asChristian, Buddhist, Jewish, or having some form ofspirituality.

A grounded theory method was used to code theinterviews conducted and provided by our course instructor.Using the guidelines of Charmaz’s “Coding in Grounded TheoryPractice” and “Memo-Writing” in addition to Corbin &Strauss’s “Strategies for Qualitative Data Analysis”,“Theoretical Sampling”, “Analyzing Data for Concepts”,“Analyzing Data for Context”, “Criteria for Evaluation”,“Student Questions and Answers”, and Lofland’s “ArousingInterest” and “Analyzing Data” guides, I began by usingthe initial and second phases of coding. The first phaseconsisted of line-by-line coding of words, lines, segments,and incidents of the data. The second phase of focusedcoding consisted of identifying in-vivo codes, focus coding,continuous comparative analysis, making theoreticalcomparisons to promote looking at the properties (what issimilar across the themes) and dimensions to find what thevarying aspects of my codes and themes were to confirm ifthey captured roughly the same things. Moreover, this

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entailed further comparative tools of analyzing data such ascomparing data with data, data with concepts, and continualmemoing to further my analysis. Following this preliminarystage, I employed memo-writing to raise focused codes toconceptual categories and levels of thinking.

To ensure validity of my key findings and focus codes(i.e. “communicating with patients”, “being present”,“idealizing the past”, “talking but not doing” etc.) bysituating them in juxtaposition with scientific framing.This entailed reviewing the empirical literature to anchormy focus codes in existing social research findings andidentify keywords located in disciplinary knowledge to makesense of grief. Pervasive Psychology of Self-Defense Theorywas used to articulate the nexus of the medical model withthe manner in which Americans and Hospice volunteers viewdeath and grief. I also drew on two research studies toelucidate how death anxiety, death concern, self-actualization can influence the future expansion of hospicesince death awareness is required to normalize death in ourculture. Finally, I use the work of Gubrium and Holstein toaccount for the immense volume of discrepancies divulged inthe interviews. While narrative slippage appears tangentialto understanding grief, I use it to provide an explanationof why this discrepancy may have occurred.

With emphasis on staying close to the data,synthesizing codes with existing empirical research, andfinding the ‘gap’ in knowledge within the ongoingtheoretical conversation, I felt more confident to claim myfindings garnered enough credibility to foster their senseof trueness and validity. This increased the likelihood ofmy findings being considered a viable contribution to theongoing empirical discussion.

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“COMMUNICATING WITH PATIENTS”

All volunteers included in this study expressed variousforms of enthusiasm in their advancement towards achievingmindfulness and spiritual development. These claims of“wanting to just help”, “provide comfort”, or “beingpresent” often denoted in some cases the antithesis of whatwere their actual self-serving agendas. Consequently,hospice volunteers often recited a desire to “communicatewith patients” and their subsequent disappointment whentheir volunteer coordinator would assign them to patientsthat were not capable of meeting this expectation due toreasons outside of their control.

While these aspirations are ostensibly well intended intheir presentation, this sentiment presented an impedimentfor volunteers to receive “self-affirmation” in order toregain their self-integrity. Efforts to reaffirm theirthreatened identities were done so in copious ways such asthe desire to interact with hospice patients and to benoticed as a success. This proved itself as tantamount forvolunteer’s sense of viability. One volunteer offered twoexamples of these factors when discussing this need toreaffirm his self-integrity; “Well, I think my biggestdifficulty is working with people who don’t achieve sometype of outcome, some type of positive outcome, as far asfunctional mobility.” Following afterwards in sequentialorder he for a second time inadvertently remarks on histhirst for receiving an outcome that can be measured interms of a success or failure as he deliberates whether ornot he had received any recognition or reward for hisservice.

“I would say nothing formal, I mean every year theproject sends out something that looks kind oflike a diploma, ‘Thank you for your service’s so

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that’s certainly recognition, but I do, I mean,the wanting side of me, the ego, whatever side ofme, likes to be able to say to people at work orfriends, ‘oh, I volunteer at hospice.’ And so Ido get some attention that way, and I’m sure thatI have some, I don’t know if I’d call themunhealthy motives, or just some sort of attachmentmotives, or warning attention motives for sayingit, and I think there’s also something that’s verypure for me as well, so I think it’s both.”

The aforementioned responses resemble paradoxes in hisrole slurring as he attempts to maintain his other-directedself while simultaneously exposing his self-adulation viadivulgence of his discursive behavior and inner-directedmotives. The desire to seek an equivalent exchange ofreciprocation from some volunteer’s patients was notnecessarily always the case and when it did occur it was notexplicitly discernible either as it was latent in subtext.Volunteers would often reveal ambivalence about theirperceived sense of “productivity” and why volunteering was“challenging”, “difficult”, or “frustrating” because it madethem feel uncertain if their assistance was even needed. Onevolunteer described this kind of “challenge” or“psychological threat” nurses would often pose to theirsense of worth or “self-integrity” as the respondent loudlyasks himself during the interview, “What does that hour meanto this patient? I mean why? What what (sic) are youcontributing here when so much motion?” It seems intuitivelyillogic to be upset at a nurse who is charged withalleviating the symptoms of pain and suffering inherent toterminal illness yet the volunteer’s reputation seeminglysupersedes this kind of thought process.

The common thread of most of the volunteers were“having expectations”, “outcomes”, “wow” moments, and“transformative” happenings that remains in consistent withSelf-Affirmation Theory as it asserts that reaffirming one’s

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self-integrity can be found during a significant specificevent, especially when the stakes are unusually high. Theway one volunteer put it was, “So I don’t know if it was aWow because he was high or a Wow because of where he, whathe was experiencing, where he was going. Um, but um, I, Icertainly don’t want to miss the Wow moment.” In anotherinstance a volunteer voiced this quest for a transformativemoment as they asserted, “I don’t think that just becauseyou’re going into hospice, even in a hospice that’s as coolas the one I’m at, that there’s gonna be this transformationall of a sudden where this totally enlightened being says‘bring it on’, I’m here, ‘I’m ready’.” In other instanceshospice volunteers were fairly discriminatory towardspatients with dementia because of their inability toconverse back and forth; thus, instigating recursiveperceptions of their self-worth. The following statement ofone volunteer is demonstrated below:

“Well I didn’t expect to work in a hospice withsomeone who had the end stage dementia. I thoughtI was going to be working with someone that wouldbe able to converse or communicate, and (pause)someone that obviously was terminally ill, well Iknew that going in that those are the patientsthat I would be working with but I didn’t expectto be working with someone that you can’tcommunicate with.”

The volunteer epitomizes explicitly having apreconceived schema to seek affirmation and “make adifference” via communication with patients who still hadcognition to speak. Volunteers often let slip theircognizance of how this discrimination toward patients withdementia contradicted their training in self-work andspiritual development as a means to achieve compassion forboth people and the dying. The volunteer in theaforementioned block quote begins engaging in narrative

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editing to accommodate for the blunder made during hispersonal narration; “Like, I don’t want to be with thatdementia patient. I’m open to, to anyone that I need to be.It all comes down to that relationship.”

The necessity for many hospice volunteers tocommunicate were not concerned overall with their patientsbut rather their abdication of practicing “emotionalattachment” toward their patients. As an alternative,“making a difference” and “just trying to help out” referredto their damaged sense of integrity that aroused a cycle ofrecursive practices in order to reaffirm themselves through“interactive processes” to achieve a “positive outcome”.Despite the variance hospice volunteers expressed thesesentiments and conditional concerns about non-verbalpatients; this can be widely attributed to their perceptionsof non-verbal patients being a “psychological threat” totheir “personal adequacy” and inevitably their pursuit torecapture their lost integrity through reaffirming cycles ofrecursively motivated processes.

“IDEALIZING THE PAST”

Hospice volunteers are expected to employ the approachof emotional attachment to develop empathy, sensitivity, andcompassion for dying patients. Contrary to the medicalmodel’s “detached concern” approach to patient care,emotional attachment fosters attunement to the whole bodyneeds and desires of the patient to mitigate feelings ofstress, anxiety, isolation, and discomfort often associatedwith detached concern. Acquiring these vital practices ofcompassion, however, can be an onerous and fearful endeavorfor hospice volunteers. Learning to become empathetic todeath and dying requires volunteers to think introspectivelyof their own death as means to becoming more comfortablewith their own mortality and those who are dying. This isan essential prerequisite to provide authentic care andcompassion for dying patients.

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Due to Western cultures ostensibly negative connotationwith death and dying, professionalized medicine adopts“avoidance” rather than “acceptance” of death. Because themedical model is the prominent mode of treatment forterminally-ill patients, hospice volunteers often strugglewith the idea of confronting death because it requiresreconciling with their very own suppressed and repressedemotions. There was a consistent theme in the interviewsthat could help signify which model of care and relativeapproaches with clients the volunteer was most closely ableto identify with. The indicators that informed me ofwhether or not a volunteer was reverberating subtle phrasesthat are commonly associated with death anxiety was if theyspoke reflexively or retrospectively about their pastexperiences with death. Retrospective accounting of pastevents meant volunteers reflecting about death using “socialdistancing,” “detached concern,” and the resonance of “deathanxiety” when reflecting and contemplating about their veryown mortality.

In the following account a volunteer reflects on theprospect of his death and a former patient’s death andinputs that, “Denial. Yeah. Which, denial is great. Imean, it can be very useful at times but you know, Iactually, at this place have surrendered to, to, I haven’tsurrendered to dying like I’m not ready to die today, now,this moment.” Another volunteer offered similar insight onthe subject of death awareness, “That’s not public. Youknow, you don’t, it wouldn’t add anything – except I wantyou to know that I am doing something right. That’s just notit.” This position of death being seen as taboo orinappropriate clearly demonstrates the framing of themedical model which trains caregivers in “expressiveavoidance” which consequently results in death avoidance.Avoidance stifles death awareness; it also perpetuates thealready preconceived negative characterizations of death inour culture that are transmitted in American discourses ofmedical practice. This finding is the antithesis of what

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underpins the ethos of Hospice which is acceptance throughawareness.

In other circumstances volunteers continuouslyreferenced a nostalgic valence in their remarks that wereregularly tangential and superficial in nature. Instead ofdiscussing the patient as they knew them during their timeat Hospice, reflection was instead diverted to the patient’spast. Dancing around the dying person as they knew them tobe leading up to their death, volunteers expressed griefover the transitional process between “living” and “dying”.“Have a little more education” or aggrandizedcharacterizations of the patient as have been being“brilliant”, “beautiful”, attractive”, or “highly educated”usually denoted death avoidance. One volunteer reflected ona patient’s life and stated, “He was a 95 year old patient,and apparently he was from an upper echelon like most of ourpeople. His wife had died, and he was just a charming man”.The other respondent swiftly chimed in afterwards anddescribed the man’s wife in a comparable fashion stating,“She was from one of the very good colleges, Ivy League, Iwon’t name it, but my word.” To show the ubiquitous natureof such descriptions, another volunteer also chose to speakabout a deceased patient’s beauty:

“Dorothy drooled a lot she was a drooler but shewould do that and um her nose would run and foodand I mean you know what it’s like but never theless she was beautiful and before I even knew herI mean she was just one of the ladies at the tableand I thought to myself this woman she, first ofall she had to have been a knockout in her day ifshe was beautiful in this situation.”

This resistance to speak in a simple present tense inconjunction with some of the volunteer’s infatuation ofwanting to have known their patient during their prime stageof life appeared to signify an avoidance of “death

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acceptance”. These idealized and aggrandized depictionswere a defense mechanism and a diversion tactic thatprovided justification for their avoidance to discuss deathwhile simultaneously maintaining their proclaimed statusesas having death acceptance.

“TALKING BUT NOT DOING”

A third theme that arose from the data was theperpetual narrative slippage and editing due in light oftheir regrettable remarks and discursive practices that wereclearly unaligned with the narrative formation inherent tothe structural framing of Hospice. This was a consistentstrand throughout the interviews as well that comprised ofvolunteer’s frequent insensitive remarks, conditionalcompassion, and dissention toward patients with undesirablediseases. Hospice volunteers are educationally trained inthe importance of compassion, emotional concern,unconditional positive regard, mindfulness, exercises andtraining in mindfulness and meditation, and self-introspection of mortality as they all constitute thebuilding blocks that in due course foster “death awareness”and compassion for those who are dying. Therefore, deathavoidance can compromise volunteer’s ability to provideoptimal compassion for the dying (Bluck, Dirk, 2006).Drawing from Gubrium’s (1998) article named NarrativePractice and the Coherence of Personal Stories, it isasserted that “corporal and verbal” metanarratives arecomposed to divert perceived “tactile punishment” from theirimpressions during social intercourse. Perhaps volunteers,using the idea of tactile punishment, experience a similar

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bind between how they truly feel and their decision tonarrate their storytelling in hopes of pleasing the hospicecare staff, its patients, and their family members (Gubrium,p. 170).

A cornerstone to the initial hospice movement was toperforate the American perception of death and its goal ofadvancing death awareness. This would be the vehicle ofpreference to traverse the country and that would disarm thefear of death that are transmitted in American culturethrough the medium of norms, values, and practices. This iswhere the role of the hospice volunteer comes in as they arethe designated individuals who will pass the torch on tothose who have been misinformed or lack knowledge aboutdeath and dying. The manifestation of this death awarenesslies heavily on the hospice volunteer and their ability topresent themselves as walking paradigms of Hospice valuesand ethics to demonstrate instead of merely lecturing aboutit. Despite the emphasis to make death and dying normativeby spawning the proliferation of death awareness, volunteersnevertheless often relinquished this sacred pledge. In thefollowing account, a volunteer discusses a moment when hewas assigned to a patient who had maggots. Due to thecondition of this patient, the volunteer explains why itwouldn’t be a good idea to talk about it in public, “And,uh, I went and saw him, it was not something that you againexplain to your grandchildren or golfing buddies, but that’spart of hospice.”

Other ways volunteers reinforced dying as taboo inWestern culture was they felt it would outcast themselvessince talking about death is not a common subject; thislogic is seen in another case where a volunteer explained itas such, “Mmmm, not really. I um, maybe just a friend ortwo. Not to the extent. I don’t tell exactly what happens.I just tell them I go visit, but it’s briefly, yea?” One ofthe oddities this reoccurrence presents is that she laterexplains during the interview how the great degree ofinfluence discussing feelings and experiences with other

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people about death openly can be helpful to cope with death,“Well it’s good because we can all come together anddiscuss. We can really discuss about our patients in depth,you know, and share some of our experiences and maybe learnfrom one another.” The discord in the volunteer’s personalnarration about hiding her hospice experience with thepublic reveals her failure to cohere with the narrativeframework of Hospice, resulting in an adversive paradox tothe hospice movement.

Hospice volunteers are taught to have unconditionalpositive regard for people, especially their patients. Theinstrumental necessity to practice this acceptance of peopleis to help people become sensitized and more empathetic todeath both in hospice settings and in public venues outsideof hospice. Volunteers would sometimes make use of aselective, somewhat pseudo altruistic approach to caring forpatients; therefore, consider the following passage madefrom a volunteer about this notion of being selective andjudgmental, “There’s such a great opportunity to connectwith certain residents, certainly not all of them or even amajority of them, but you know, there comes a time when aperson like myself might really click with someone.” Thedissonance is demonstrated once more as he offered anassessment of himself, “I see mistakes that I have made orthings that I grade as mistakes, there are people who I justdon’t like at all, and I have judgments about them and thenI have judgments about myself.” This volunteer’s statementrepresents on a micro level the macro implication thiscauses as it serves as a massive impediment to successfullyreupholstering a culture with death awareness. Simply put,when people discriminate against one another it causes abreakdown in communication that makes transformative changesin society unbearably stagnant or not made at all. Thisselectivity towards “having favorites” and the nexus it haswith being conditional is illustrated in the statement belowfrom a volunteer:

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“I thought, yeah I definitely would have beenopen, absolutely. Yeah. Because I think withDorothy we had that, a little bit of arelationship, even though we’d never even held aconversation. We did have a relationship. Theothers I’d visit just occasionally and you knowit’s more helping out the caregiver thananything.”

Volunteers are expected to reduce their anxieties ofdeath in order to compassionately care for dying patients.The hospice movement relies on its members to be the agentof change through communicating to the public; if hospicevolunteers cannot adhere to their own institutionalpractices nor share their experiences with family andfriends it puts the expansion of death acceptance inAmerican culture at gunpoint. The myriad of instanceshospice volunteers inadvertently stirred off the narrativeroad of hospice storytelling is embedded throughout alleight interviews. Since eliminating death anxiety andavoidance is the key to reconceptualizing death in a lessthreatening way and therefore increasing the likelihoodpeople will grow a compassion for the dying; it is ratheralarming when volunteers explicitly denounce patients ordescribe their reluctance to share their experiences that isasked of them from the very start of volunteering athospice.

DISCUSSION AND CONCLUSIONS

The findings in this research report revealed thatHospice volunteer’s stories can be interpreted akin toIrving Goffman’s dramaturgical perspective. Hospicevolunteers (actors) struggled with maintaining their frontstage role (altruistic, compassionate, unconditional)without “breaking character” (narrative slippage) thusrevealing their “back stage” identities (themselves as

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individuals autonomous from Hospice). The results indicatedthat the hospice movement’s dissention carries antiquatedpresuppositions that are no longer applicable to thepragmatic condition and because hospice is now widely anAmerican movement, it should not come as a surprise thathospice volunteers are merely imperfect beings that aresimply discussing their conditional, judgmental, self-affirming, self-adulating, detached, uncompassionate, deathfearing, and non-disclosing aspects of themselves that donot characterize them as a person.

The findings in this study add multiple pieces to theconversational puzzle in the literature as well as severalimplications that concord with these new pieces. Thefindings in this study are significant as they are fairlyconsistent with contemporary Buddhist thought and Buddhistinspired hospice discourses of phenomenology in relation toits contemporized revisions of narrative editing. Sincethere is a now a new need for reconstructing itsdeconstructionism of Western culture and medicine,researchers have turned towards the dichotomization of“Buddhist hospice volunteers” in relation to its “mainstreamAmerican volunteers” counterparts to differentiate andultimately disassociate Buddhists from Americans. Thisstrikes me as cultural warfare at its lowest point wheresuch framing is required to preserve the grassroots hospicemovement’s ideals by diminishing the efforts of Americanhospice volunteers, diluting what hospice is really allabout. This finding adds to the literature a new piece tothe puzzle while simultaneously demonstrating what theimplications are if this viscerally charged rhetoriccontinues in this trajectory in the future.

While I do not consider my findings regarding hospicevolunteer’s experiences unusual in and of themselves,however they are important in the sense that they illustratehow hospice volunteers are informed on what they aresupposed to think and say by virtue of their personalnarrations being clearly unaligned with hospice word

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framing. I ardently consider this a valuable contributionto the existing literature. The notion of Hospice asantithetic to American healthcare is frankly misleading.Hospice as an institution has influenced, transmitted,generated, and produced an entirely new set of values,norms, and practices about death and dying in America to thetune of 45% of total deaths in the United States occurredunder the care of hospice in the year 2011 (NHPCO 2011).Moreover, according to the 2013 “Facts and Figures Report”from the National Hospice & Palliative Care Organization(NHPCO) it calculated an impressive 5,500+ hospice locationsin full operation and 550,000+ volunteers strong.Furthermore, hospice was a $15 billion industry in theprevious fiscal year of 2013. While proponents of hospicecommonly argue that this fiscal growth is attributed tocapitalist run hospice centers, like Vitas Hospice Services,and claim that these companies are a nonrepresentativesample because they are a for-profit organization. Thisrationale fails to look inward at statistics that aregrounded in reality. For example, consider the followingstatistics: 32% of Medicare providers listed themselves asnot-for-profit tax status while 63% held for-profit taxstatuses in the fiscal year of 2012. Moreover, the totalpercentage of hospice patients served in the year 2012comprised predominantly of Caucasians that came in at acommanding lead at 82.2%. What’s more is that the totalamount of days patients stay at hospice continues to risewith the 2012 mean averaging at 71.8 days upon admission, ora 10 day increase from the previous year of 2011. Lastly,62.3% of all hospice patients in the year 2012 had non-cancer diagnoses, this is nearly 25% more than patients witha cancer diagnosis’s which consisted of 37.7%. Thesestatistics cannot be relegated to rhetorical relations orreduced to outlier cases of Medicaid fraud; hospice IS afederal supported and implemented public policy and hasbecome a well-received integral component of Americanculture, legislative policy, and its healthcare system. The

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implications of these statistics are only deemed asimplications in lieu of the salient figure leading thecharge of the modern hospice movement’s leaders do not sharethis as a remarkable success story and instead, disassociatethemselves from it.

Hospice has proliferated exponentially since 1974 asit has manifested itself into 5,500+ sized and still growingnetworks of hospice programs that are in full operation andfull capacity. The Medicaid hospice guaranteed benefit andits $15+ billion revenues during 2013’s fiscal year arenothing short of an admirable feat and an alluring prospectthat deserves due deference and commemoration (Jennings2014). This celebration, on the contrary, is not sharedamong all of the modern movement’s leaders because theseaccomplishments pose a counterpardox to the ossifiedpresuppositions that could once define the impetus of theearly hospice movement. Maintaining such artifacts ofdissention and unremitting demagoguery through rhetoricalpresuppositions and binary constructs of cultural dualismsdo not hold weight or have context in the contemporarymilieu of American society. Americans are infatuated withthe services hospice care provides and its extensive growthreflects this. Therefore, any attempts to advance an agendabased upon Western criticism would undergird hospice itself.The former nihilists, idealists, and elitists who useddeconstruction to garner its inception now find themselveson the receiving end of what makes deconstruction a doubleedged sword. (Ryndes & Baily 2014:11).

The limitations of this study and its findings areprimarily due to the various challenges I had with findingmy voice on what felt like a predetermined algorithm.Hospice is not a topic of interest I would likely choose ifgiven the option to conduct my own research design. Despitethese apprehensions I strongly feel that my research projectadhered closely to the data extracted from the interviewswhile still giving due deference to the scholarly articles I

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referenced in this paper to anchor my codes and themes. Iremain uncertain if my analysis will appear slanted orcritical of hospice (which was not my intent). I feel myanalysis offers a comprehensive report about death and griefand conceptualized it in terms of its structuralunderpinnings as opposed to confining the data to merelyindividual circumstances and experiences. My final concernis that my conclusions stem from another individual’sresearch. I was not present or a participant in theinterview process, therefore I may have missed certainsubtleties which may have influenced my conclusions.

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APPENDIX

Focused Codes/Memos/Excerpts

-Aggrandizing the Self-Approaching Patients with a Distance-Choosing Not to Disclose Volunteer Experience-Considering the Self as Exceptional -Describing Superficial Traits -Discomforting Sensation of Silence-Dodging Patients Who Can’t Speak-Employing Detached Concern-Exhibiting Death Anxiety-Expecting a Positive Outcome-Expecting Reciprocation-Fearing Death-Feeling obligated to volunteer-Feeling Viable Conversing with Families-Finding the Cracks in Storytelling-Finding the Right Patient -Grieving Differently and Approaches of Caregiving-Identifying with Patients to Reflect Sense of -Judging Patients, Choosing Conditionally-Languishing in Past Tense-Longing to be Recognized-Mitigating Anxiety by Avoidance-Needing to Communicate-Reciting metanarratives-Reciting the Lines People Want to Hear-Reconceptualizing the Self-Reconstructing the Self-Saying but Not Doing-Seeking Affirmation-Spreading Awareness Leads to Changes in Policy-Sympathizing not Empathizing-Trying to Maintain Identity

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-Understanding Humans as Indifferent-Viewing volunteering Like a Job-Yearning to Travel Back in Time

Excerpts (In-Text Italicized):

“Uh, I think he realized in normal life outside of his home,we might be nodding acquaintances, uh, we might even, if wewent to the same bar have a beer together, but we’d nevertalk as closely or as warmly, or as intimately, but for hisuh, his being a patient of hospice. Uh, so you know and itnever bothered me. I don’t I never looked to be a friend. Imean you never go in there that I am going to be your bestfriend. I’m going to give you my best shot, I’m going togive you my best attention. And I’m going to try and makeyou as comfortable and have our meeting as enjoyable ordistracting as I can make it. But we’re not going to befriends.”

“Well I try not to get too attached to the patients. I knowthat I’m there to serve, to help out but, you know intraining we were told you know, not to get really tooemotional or too attached to our patients. So I try not to,but still I, I care for them.”

“Well it’s, I mean it’s inherent you know, I mean you knowwhen, I know my faults and for me it’s, it’s just a job.It’s like I go there, I do my job, and when I leave I don’tthink about it. I try not to think about it. I just detachmyself, you know?”

“Life meaning after work, anything that happens after work.That’s life, and it’s trying to balance that. Work is justwork, and when I’m home, it’s home. I try to detach myselffrom those two parts, the world to me.”

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“It’s part of work I would say. You know I go, go in, do myjob, not because um, because I want to, but I, in a way it’sa job, that’s how I think of it, without getting paid, so.”“you listen subliminally and that openness I think is veryimportant to have as well as a very strong sense of your ownboundaries. When you walk in that room it’s that person’sstory, it’s not my story, and then when you walk out to beable to leave that story as a separate thing which you hold,not as something that’s attached to you that becomes thensomething that you incorporate in a negative way. You haveto separate it out.”

“Yea, I was amazed, some of the people in the training, likethey were showing those, the films or videotapes of patientsthat were in the late stages of uh, cancer, and people werejust [emphasized word, can’t make it out] just crying andI’m saying to myself, [chuckle] I’ve got to do this.Course, I don’t think that’s, that’s good, I’m not surethat’s a real good way to interact with the patients, to beso emotional.”

“… No, don’t, I am not the least bit reluctant, I mean, Ithink I’m making it sound like I’m new to (cats?) orsomething…”“It really was a pleasant dinner party until - he - brought– this - up. Why would you? And so, you say ‘I want myprivacy,’ because it always comes around, ‘well why do youdo this? Have you always had a problem like this? I mean(laughs), ‘Why do you like this sort of thing?’”

“Well it is, it is a sub-point of this is not I mean we talkabout death to the extent that do you have a will, do youhave a living will? Uh, that’s the point. You know thosetaxes, those state taxes. All of them you know. And we talkabout in that sense and it makes a lot of sense, but wedon’t talk about death as to what is it? And we allunderstand why it is, we just run out of gas really. But uh,

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so and also I think it’s not a happy subject. I mean I don’tcare who you know, this is hardly something you can you canturn around and uh, you make (?) Uh, so it’s it doesn’twork.”

“I had to tell people the other day that I had a hospice,that, I I had an appointment I couldn’t break. I said it’shospice, oh, I really don’t like to talk about it, it’s avery private thing, and you and I know people who have alove of the pronoun “I,” and it’s just, it’s a privatething.”

“Yea well I don’t want (laughs) That is I don’t feel that itis a job that or or a volunteer activity which is uhdifficult to explain, but the question to me, and thelistener or, why is he talking about this?”

“I experience it as being a special thing and I don’t, Idon’t think this is something that you can casually bringup. I’m in a coffee club, two days a week. Group of men allretired, ten of us. This would never come up there. It’sinappropriate. Now, if I got a hole in one, I don’t playgolf, I bet that would come up.”

“Mmmm, not really. I um, maybe just a friend or two. Not tothe extent. I don’t tell exactly what happens. I just tellthem I go visit, but it’s briefly, yea?”

“it’s certainly very interesting to work at hospice becauseit’s kind of unusual, it’s a little bit off the beaten trackI think for most of us. And so I think that I have someinteresting things to share about it.”

“So, I, I know that I couldn’t have a very detailed talkwith him about what it’s like to do this service. But Idon’t feel like I need to not say anything, I don’t feellike there’s a prohibition on it.”

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“I mean and you say alright you’re going to stay for an hour. What does thathour mean to this patient? I mean why? What what are you contributing herewhen so much motion? And uh, alright we’ll come back then, and you say wait asecond uh, you work with that, but it makes it a much greater challenge to havea good level of a visit if that’s the way.”

“If some calls you to take it, take it. But they think about it beforehand and makean educated guess as to whether it will be productive or not.”

“I just don’t think that really has much quality to it. Ah, what are you, what areyou volunteering for? What are you bringing to the table? I think you have tobring experience.”

“Great satisfaction, um, it’s very uneven in the sense that I can go back and giveyou five, ten, however many fabulous satisfaction which was more than enoughto carry through the dry spots where you had a run of one month assignmentsetcetera, etcetera. And there’s no guarantee that every situation, every patient isgoing to duplicate that. But then again that’s not what you signed on for(laughs). You signed on to volunteer. And that was it, so uh, and that’s what Imean when you take away much more than you give.”

“Well you know, she’s wanting to reach out and support themmore and we do have a lot of people who just come and theygo—it’s discouraging in a way, that they don’t hold on…”

“but, I’ve come in many Wednesdays, ‘oh thank god Tim’s herebecause we’ve got to change so-and-so from this bed to thatbed, or get so-and-so on a commode, or carry so-and-so downthe stairs, so I am looked to because I have a fairly goodsize, you know, and I know how to move people.”

“Once I sort of got it off of me, I mean it wasn’t about me,I was kind of making it about me, how I felt, but it wasn’tabout me, it was about her. Once that mindset goes and youturn it to them it’s so much easier, you just want to dowhat’s good for them. And it become fun, I really enjoyed

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it, I would go see her and enjoy it and even though Iunderstood her situation, which wasn’t the best, but like Ialways said I hope she didn’t know that.”

“Right, yes exactly, so I would kind of feel that more thanI would feel the heaviness after, kind of lightening up. Itwasn’t about me, it was about her and let’s make it as funas we can and we’ll all get through this, and we did.”

“Well, “It’s a beautiful day outside.” Um (Pause) I talkabout, I don’t remember, like what did he like to do outsideand, I try to kind of deter his mind away from the hospiceand being in there and talk about things outside.”“You know I would obviously feel for her (pause) but it’dprobably take me a couple, I don’t know days, weeks, whoknows. It’d take time to get over that. You know, I, I knowwhat I’m going to, what I’m getting into and I know what mypatient has and what to expect.”

“I don’t know, I, I think you picked all the right questionsto ask. (Laughs). (Pause) I don’t know what I’ll get out ofthis and I’m just hopeful that maybe I can use it sometimelater in life, this experience. And, being able to just dealwith death, deal with disease, it’s horrible.”

“Yup. I think that, you know, I think I have less value,you know, I mean if we sit down and we talk about it I don’tbut, um, I’m sure that comes up, you know. I know that I,that one of the hardest things for me is to feel. Uh, theembarrassment of diminished um, strength. And uh, in frontof my friends and godchildren.”

“John, you know what I mean, it just wasn’t what I expectedand I’ve got several people like that, that, that, that areso comfortable with the circumstance, and I don’t thing Icould, if the tables was reversed I’m not sure if I couldhandle it that way.”

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“So we spent a lot of conversation about birds, and hunting,I don’t hunt, but you know, life in the woods and that kindof stuff, he was just, he was the kind of person who likedto tell about his life story, so I heard his life story overthe course of a couple of months. He was in Burma duringWorld War Two, the gulf, the war was going on in Iraq,during most of the time that he was cognizant, so that wasalways on, and that provided you know an instant dialogue,he told me things, he told me a lot”

“And I’ve also used it to try to get some friends to come onboard. And I haven’t really been successful at that yet,except for having them think about it, but I use it insocial situations for that reason, too.”

“And she’s in bed and has no communication whatsoever. Ihaven’t even hardly seen her because when I do, all I do isgo in and make sure she hasn’t fallen out of bed. And she’salways asleep. She’s totally medicated. So I go in andjust make sure that she’s in the same position, thatnothing’s happened and I’ll go and check every fifteen ortwenty minutes and just make sure. And now she passed away.So I’m without at the moment. I guess in [Se?] Valley maybethere’s not that many people who are requiring that kind ofcare.”

“And she’s very pleasant. It seems like she was a very pleasant person beforedementia. And when I was there I was going through some photo albums, Inoticed it looked like maybe three or four years ago she was in the album, like“Wow, she’s been here.” (Laughs). “Wow.”

“There were a lot of photographs in her room that I wouldlook at.. from when she was younger and there were a lot ofphotographs of her dressed up and with a lot of people and

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parties and, so she had quite the life it looked like fromthese photos.”

“She’s the Jewish lady, (Pause) very attractive. Her parentsread her brother’s book, uh, what’s the name of the book?Her brother…the author?”

“But I mean, it’s just very high class, you know like thisTony place in NY. And so, he has this ability but he’s ableto you know, cut it right down to basics and see this simplefood come back, ya know.”

“We get the Baltimore people. We started out, we were herebefore they were and I remember we had a professor from avery fancy girls school in one room, a vice president fromone of the big banks in another room, and we don’t get thosepeople anymore. They’re funneled over to the other place.And –and some of the places, if they can’t afford it, theydon’t keep ‘em, and they come here. And they know we’ll take‘em.”

“No, no because she was beautiful but she’d drool, no not at all. The lady priorthat Susan had the two ladies and one was Helen. Helen was more um I don’twant to say unattractive because she was not unattractive, she was more aworker person, she had come from a farm and kinda had that worker personlook and you could tell she had worked hard all her life. Dorothy looked like shedidn’t.”

“I don’t, I believe in the universal unconditional love, andwe call it many different names, but I wouldn’t say I am areligious person, I’d say I’m a spiritual person.”

“Well, I think my biggest difficulty is working with people who don’t achieve sometype of outcome, some type of positive outcome, as far as functional mobility.”

“I would say nothing formal, I mean every year the project sends out somethingthat looks kind of like a diploma, ‘Thank you for your service’s so that’s certainly

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recognition, but I do, I mean, the wanting side of me, the ego, whatever side ofme, likes to be able to say to people at work or friends, ‘oh, I volunteer athospice.’ And so I do get some attention that way, and I’m sure that I have some,I don’t know if I’d call them unhealthy motives, or just some sort of attachmentmotives, or warning attention motives for saying it, and I think there’s alsosomething that’s very pure for me as well, so I think it’s both.”

“What does that hour mean to this patient? I mean why? What what are youcontributing here when so much motion?”

“So I don’t know if it was a Wow because he was high or a Wow because of wherehe, what he was experiencing, where he was going. Um, but um, I, I certainlydon’t want to miss the Wow moment.”

“I don’t think that just because you’re going into hospice, even in a hospice that’sas cool as the one I’m at, that there’s gonna be this transformation all of asudden where this totally enlightened being says ‘bring it on, I’m here, I’m ready’.

“Well I didn’t expect to work in a hospice with someone who had the end stagedementia. I thought I was going to be working with someone that would be ableto converse or communicate, and (pause) someone that obviously was terminallyill, well I knew that going in that those are the patients that I would be workingwith but I didn’t expect to be working with someone that you can’t communicatewith.”

“I’m open to, to anyone that I need to be. It all comesdown to that relationship.”

“I couldn’t call it a friend because like I said we neverhad a conversation. I didn’t know anything about her shedidn’t know anything about me. All we had was what we hadright then and there, there was no before or after so friendno.. I can see calling someone a friend during a hospicevisit if I was doing the same once a week for a year orwhatever I had with Dorothy with someone that you couldconverse with, absolutely they could become a friend, areally good friend. But no I wouldn’t call her a friend.”

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“I’m sorry I didn’t learn this, Alzheimer’s and, not that I know so much about itnow, but the little bit that I do know, I’m sorry I didn’t know about it beforebecause, I had, when I was working my employer had dementia, I don’t know ifhe had Alzheimer’s, he had dementia, and it was scary. He went from thisbrilliant person to all of a sudden being off. And you sort of step back you don’tknow how to deal with it you don’t know how to talk to them, so I wish that I hada little more education and knowledge when I was still with him to maybe, youknow, made it a little easier for him at the time because he must have been farmore scared than I was.”

“So that kind of thing, the agenda is much more broad at hospice than at work.And I see the need for both; the patients that come in to outpatient, they needsomebody like me or like the other therapist there to say ‘well, let’s work on, youknow, getting your hip extended during, during gait.’ They don’t need somebodyto sit and talk with them. So.”

“The other thing that was really, was part of the story that I hesitated at first totell you, but I will anyway, is um, she uh, I told you she was a physician, and wetalked about healing, she had been very interested in hands on healing herself,and she had as a matter of fact taken some courses with her husband who was anurse, and so I, she asked me to give her healings, which I did on a regular basiswhile this was happenings, and um, it was a, for me as a fledgling practitioner itwas a wonderful experience because she gave me so much positive feedback andthere were, many wonderful things happened to facilitate the peacefulness of herdeath. In that it was a matter of [can’t understand] a very personal thing thathappened.”

“She’s a single woman and um, we just talked and talked andtalked the day before yesterday, and when I went inyesterday she was in a lot of pain, the reason she’s in thehospital is they’re doing, you know, pain management, ittakes a little while to regulate all the meds, it usuallytakes 24 to 36 hours before they can get everything ok. Andum, through her pain she said I’m so glad you came back she

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said I wanted to talk to you about something we were talkingabout yesterday.”

“Denial. Yeah. Which, denial is great. I mean, it can be very useful at times butyou know, I actually, at this place have surrendered to, to, I haven’t surrenderedto dying like I’m not ready to die today, now, this moment.”

“That’s not public. You know, you don’t, it wouldn’t addanything – except I want you to know that I am doingsomething right. That’s just not it.”

“He was a 95 year old patient, and apparently he was from an upper echelon likemost of our people. His wife had died, and he was just a charming man”.

“She was from one of the very good colleges, Ivy League, I won’t name it, but myword.

“Dorothy drooled a lot she was a drooler but she would do that and um her nosewould run and food and I mean you know what it’s like but never the less shewas beautiful and before I even knew her I mean she was just one of the ladies atthe table and I thought to myself this woman she, first of all she had to havebeen a knockout in her day if she was beautiful in this situation.”

“And, uh, I went and saw him, it was not something that youagain explain to your grandchildren or golfing buddies, butthat’s part of hospice.”

“Mmmm, not really. I um, maybe just a friend or two. Notto the extent. I don’t tell exactly what happens. I justtell them I go visit, but it’s briefly, yea?”

“Well it’s good because we can all come together anddiscuss. We can really discuss about our patients in depth,you know, and share some of our experiences and maybe learnfrom one another.”

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“There’s such a great opportunity to connect with certain residents, certainly notall of them or even a majority of them, but you know, there comes a time when aperson like myself might really click with someone.”

“I see mistakes that I have made or things that I grade as mistakes, there arepeople who I just don’t like at all, and I have judgments about them and then Ihave judgments about myself.”

“I just don’t think that really has much quality to it. Ah, what are you, what areyou volunteering for? What are you bringing to the table? I think you have tobring experience.”

“I thought, yeah I definitely would have been open,absolutely. Yeah. Because I think with Dorothy we hadthat, a little bit of a relationship, even though we’d nevereven held a conversation. We did have a relationship. Theothers I’d visit just occasionally and you know it’s morehelping out the caregiver than anything.”

“I couldn’t call it a friend because like I said we neverhad a conversation. I didn’t know anything about her shedidn’t know anything about me. All we had was what we hadright then and there, there was no before or after so friendno.. I can see calling someone a friend during a hospicevisit if I was doing the same once a week for a year orwhatever I had with Dorothy with someone that you couldconverse with, absolutely they could become a friend, areally good friend. But no I wouldn’t call her a friend.”

“But I’m, to do this kind of work you have be able to carrya great deal and process it in some way. You know I’m notgoing to fold over this, but it would be really nice to havesome kind of forum or, where you could have the opportunityto talk about it with people who are experiencing the samething.”

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“At times. I guess I have only seen twice. And at other times he doesn’t want totalk to anyone else. But, also he couldn’t communicate very well. But did he havedementia as well, or? He did, yea, and a lot of times I would just sit there, watchhim, talk to him, trying to uh, stay positive for him. Make him feel good.”

“So yea, it would have been nice if I knew her past you know, if I had been a longtime friend of hers and if she had come down to this, then I would maybe at leastunderstand some of the names of people or carry on a, maybe a betterconversation with her.”

“Challenging at times, sad sometimes, and happy at times.Hopeful, sometimes I hope that one day they, a patient willsay “Oh hi (her name)!”

“That this person has had a pleasant time while you werethere. It’s a distraction from what he is used to (sigh),he’s had a chance to talk about his life, he’s had a chanceto talk about his concerns, his successes, what hisdisappointments are. Whatever he wants to talk about. Youshould be a good listener. He has no interest in what you,you have done. Uh and shouldn’t so he, when he’s all throughhe feels all good or better.”

“I felt very comfortable with him, uh, every now and thenyou meet somebody who just wants to talk and the life of youis very important. But this fellow only let himself talk fora few minutes, and then he’d insist I would. And it was avery interesting.”

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