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Be known, be available, be mutual: a qualitative ethical analysis of social values in rural palliative… Pesut, Barbara; Bottorff, Joan L; Robinson, Carole A Sep 28, 2011

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Be known, be available, be mutual: a qualitativeethical analysis of social values in rural palliativecarePesut et al.Pesut et al. BMC Medical Ethics 2011, 12:19http://www.biomedcentral.com/1472-6939/12/19 (28 September 2011)RESEARCH ARTICLE Open AccessBe known, be available, be mutual: a qualitativeethical analysis of social values in rural palliative careBarbara Pesut1*, Joan L Bottorff1,2 and Carole A Robinson1AbstractBackground: Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliativecare is still largely under-studied and under-theorized. The purpose of this study was to gain a deeperunderstanding of the values informing good palliative care from rural individuals’ perspectives.Methods: We conducted a qualitative ethnographic study in four rural communities in Western Canada. Eachcommunity had a population of 10, 000 or less and was located at least a three hour travelling distance by carfrom a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompaniedrural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and thencoded using NVivo.Results: This study illuminated the core values of knowing and being known, being present and available, andcommunity and mutuality that provide the foundation for ethically good rural palliative care. These values werecongruent across the study communities and across the stakeholders involved in rural palliative care. Althoughthese were highly prized values, each came with a corresponding ethical tension. Being known often resulted in aloss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. Thevalues of community and mutuality created entitlement issues, presenting daunting challenges for coordinatedchange.Conclusions: The values identified in this study offer the opportunity to better understand common ethicaltensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular,these values shed light on problematic health system and health policy changes. When initiatives violate deeplyheld values and hard won rural capacity to address the needs of their dying members is undermined, there arelong lasting negative consequences. The social fabric of rural life is frayed. These findings offer one way to re-conceptualize healthcare decision making through consideration of critical values to support ethically goodpalliative care in rural settings.Keywords: palliative care, qualitative research, ethnography, ethics, rural health servicesBackgroundAlthough attention to healthcare ethics in rural areas hasincreased [1], specific focus on rural palliative care is stilllargely under-studied and under-theorized [2,3]. This is asignificant gap in light of an aging demographic withmultiple complex chronic illnesses and economicallyinduced migration patterns that include older adultsretiring in rural areas for financial benefits and youngeradults leaving rural areas because of declining employ-ment in resource dependent industries [4]. These factorshave the potential to place significant strain on ruralareas that already have healthcare resource challenges.Despite the dearth of literature addressing rural pallia-tive healthcare ethics some issues can be extrapolatedfrom the rural ethics literature and the palliative ethicsliterature. Ethical issues common to rural communitiesinclude limited economic resources; reduced health status;limited availability and accessibility of healthcare services;* Correspondence: barb.pesut@ubc.ca1School of Nursing, University of British Columbia Okanagan, 3333 UniversityWay, Kelowna, BC, V1V 1V7, CanadaFull list of author information is available at the end of the articlePesut et al. BMC Medical Ethics 2011, 12:19http://www.biomedcentral.com/1472-6939/12/19© 2011 Pesut et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative CommonsAttribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction inany medium, provided the original work is properly cited.cultural and personal values; dual and overlapping profes-sional-patient/family relationships; confidentiality; care-giver stress; and few resources for ethics consultations[5,6]. Layered upon these rural issues are the ethical issuesinherent in delivering palliative care: communication anddecision-making; advance care planning; withholding orwithdrawing treatment; symptom control; and euthanasia[7-10]. Ethically good palliative care is described as hon-ouring patient wishes to the fullest extent possible withinthe limits of the law [11] and as evaluating interventionsin terms of their burden to benefit ratio [8]. At a macrolevel, palliative ethical issues surround justice and theequitable distribution of healthcare resources. It is increas-ingly common to see palliative care referred to as a funda-mental human right [12]. According to a report ofToronto bioethicists’ opinions, of the top 10 ethical chal-lenges facing Canadians in healthcare, a shortage of ruralprimary care providers and teams is #4 [13]. Clearly thereis a need for further exploration of healthcare ethics inrural palliative care.The approach one takes to the study of rural healthcareethics is important. Kelly [14] has argued that bioethics inrural health must pay attention to the lived experiencesof individuals that are formed by the complex political,economic and social realities that represent the space,place and time dimensions of the rural context. It is notsufficient to use a traditional ethical approach of theautonomous subject, but rather ethical issues need to beconsidered within the richness of the context. Others[15] have cautioned against extrapolating urban ethicalissues into rural contexts. Rather we should sensitively“go into rural areas as into a foreign land” (p. 53). Thismay be done best through “a kind of moral ethnography”[ [16] p. 60]. This approach stands in contradistinction tothe tendency to view rural places as static unitary cul-tures [14], or to equate rurality with being primitive oroutdated [15]. Strengths such as social solidarity, closeknit relationships and community commitments thathold potential for high quality, integrated healthcare [17]need to be considered as part of the ethical picture.The purpose of this study was to conduct the type ofmoral ethnography described above - an exploration togain a deeper understanding of the values informing goodpalliative care from rural individuals’ perspectives. Thestudy builds upon the understandings that good care isultimately determined by the highest values which in ruralareas may include self-reliance, self-care, supportive net-works, a strong work ethic and a definition of health thatis related to the ability to work [18]. Further, in palliativecare, where quality of life is both central and highly indivi-dualized, values are best understood by watching whatindividuals choose in life [10]. Therefore, in this study wesought for a descriptive account of those values enacted inrural areas that represent good palliative care. Further, wewanted to know how individuals worked to enact thosevalues and how healthcare supported or obstructed therealization of those values.MethodsTo gain a nuanced understanding of the values informinggood palliative care from rural individuals’ perspective, aqualitative ethnographic approach was used in this study.This represents an important methodological advance-ment in biomedical ethics by using the qualitative methodof ethnography to generate knowledge through which toadvance ethical theory [19]. Ethnographic data providesthe rich contextual background that pays attention to thelived realities against which good care must be evaluated.The study was conducted in four rural communities inWestern Canada with populations of 10, 000 or less thatwere located three or more hours travelling distance bycar from a specialist palliative care treatment centre (seeTable 1). Data were collected through 95 interviews, 51days of field work and 74 hours of direct participant obser-vation where the researchers accompanied rural healthcareproviders. Data collection occurred in two cycles over atwo year period. Preliminary findings were presented to allparticipants after the first cycle of data collection via com-munity meetings to ensure that the findings representedparticipants’ experiences and to help identify importantareas for further data collection. Ethical approval for thisstudy was obtained from the University and from theHealth Authorities within which these communitiesresided.Interview participants were identified through purposiveand snowball sampling. Palliative care “champions” ineach community helped to ensure representation of thoseindividuals most involved in palliative care. The sampleincluded family members (n = 25), volunteers (n = 11),nurses (n = 27), physicians (n = 5), social workers (n = 2),healthcare administrators (n = 15), an occupational thera-pist (n = 1), funeral directors (n = 3), a pharmacist (n = 1)Table 1 Palliative Care Support Services by CommunityCommunity Palliative Care Support#1 Home and community careER services available 0800-2000Two palliative beds in long term care#2 Home and community careER services available 24 hours per dayTwo palliative beds in long term careTwo palliative beds on acute medical unit#3 Home and community careER services available 24 hours per dayTwo palliative beds in long term careAcute medical unit but no designated palliative beds#4 Home and community careER services available 24 hours per dayHospice beds attached to long term care unitAcute medical unit but no designated palliative bedsPesut et al. BMC Medical Ethics 2011, 12:19http://www.biomedcentral.com/1472-6939/12/19Page 2 of 11and clergy (n = 5). Seventy-two interview participants(80%) were female and 18 (20%) were male. Averagelength of time for participants living in the communitywas 29 years with a range of 2 to 82 years. Seventy (80%)participants were age 46 or older. Direct participant obser-vation was conducted primarily with nurses who workedwith palliative individuals in an acute care hospital orhome setting and consisted of accompanying the nurse inthe work context. Field work consisted of immersionexperiences designed to enable the researchers to get toknow the communities better and entailed activities suchas reading local papers, visiting museums and attendingfunctions such as the hospice palliative care societymeetings.Interviews were conducted face to face in the commu-nities by the principal investigator or research assistantusing a semi-structured interview guide. Questions soli-cited participants’ ideas of good palliative care and thestrengths, gaps, and aspirations for palliative care in theircommunity. Participants were asked to relate stories ofboth positive and negative palliative care experiences. Theinterview guide was pilot tested on two participants andthen refined. Interviews lasted from 30 to 90 minutes,were audio-taped, transcribed verbatim, checked for accu-racy and entered into NVIVO qualitative software for ana-lysis. Field notes were written of interview, observationaland fieldwork experiences. These were not integrated aspart of the thematic analysis but rather helped to heightentheoretical sensitivity, to inform and triangulate the find-ings from the interviews and to contribute to a rich con-textual understanding that assisted analysis.Questions that guided the analysis of the data were“What does this data tell us about the highest values inthe context of palliative care in rural areas? What beha-viours do individuals enact to ensure these values arefulfilled? How does healthcare support or obstruct thesevalues?” The investigative team began by independentlyreading several transcripts and inductively identifying themost prevalent thematic values. Once these values wereidentified the interview transcripts were coded usingNVIVO. Analytic quality measures included confirmingwith participants, continuing to analyze and compare cod-ing among investigators and searching for data pieces thatmight contradict the findings. Participant observation andfield work also played an important role in enablingunderstanding of how those values were enacted in thecontext of the community, and in particular in the contextof the healthcare community.ResultsThree primary values were constructed from an analysisof the interviews, fieldwork and participant observation:knowing and being known, being available and present,and maintaining a spirit of community and mutuality.These values were congruent across the communitieswithin the study and across the stakeholders involved inrural palliative care. Although these were highly prizedvalues, each came with a corresponding challenge. Beingknown often resulted in a loss of privacy. Being availableand present created a high degree of expectation andpotential caregiver strain. The values of community andmutuality created entitlement issues, presenting dauntingchallenges for coordinated change.Knowing and Being KnownKnowing and being known was the value that participantsspoke of most frequently. Being known and knowingothers within the community provided benefits that oftencountered deficits in resources. Although there are fewformal dedicated palliative services in rural communities,patient needs were often known and met through aninformal system of care. For example, when patientslocated outside of the town needed medication or a homesupport worker, healthcare providers often called uponneighbours they knew who might be available to fill in thegaps. Knowing provided an important level of accountabil-ity to ensure that others would not just be available, buttrusted, when they were needed. As the following quotefrom a healthcare administrator suggests, knowing wasnot just valued, it was necessary for building better care.There really is value in getting to know the people thatyou work with on this team. You know, the dischargeplanning nurse borrows our chairs for her daughter’swedding and, you know, we see each other...And I thinkit’s not just nice, it’s essential. If you don’t know thesepeople, you’re not able to develop the trust and, youknow, just keep working on the commitment to make itbetter (A-4).Family members spoke of the value of being known byhealthcare providers. This contrasts sharply with the lackof knowing they experienced so acutely when they had tocommute to an urban centre for care by strangers. Onefamily care provider reflected on the difference in hermother’s care when she was located in an urban versus arural center highlighting the importance of the socialknowing in rural areas. The value of being known is exem-plified in the following quote, which shows how bothmother and daughter worked to establish important butmissing connections, such as with a social worker fromtheir home community whom the daughter could trust toknow what might be best for her.Even just getting to know the maintenance people,the cleaning people, she became attached to [them].It was just more of a better connection with staff Ithink....A social worker in the [urban] hospital got toPesut et al. BMC Medical Ethics 2011, 12:19http://www.biomedcentral.com/1472-6939/12/19Page 3 of 11know me because she was from [my community]originally....so that was kind of neat. She knew mysituation, I don’t think I got any special care or any-thing but she understood the best situation for myself(F-6).Healthcare providers spoke of knowing the patient andfamily well enough to predict needs that might arise in acontext where palliative care coverage was not available24 hours per day. There was also a sense of privilege incaring for those that they knew and of having the distinc-tion of being someone in the community who could careas illustrated by the following quote by one homecarenurse. “Like they love doing home care nursing. They arecaring for their neighbours, their colleagues, friends” (N- 3).This knowing was also important between healthcare pro-viders. Nurses often found themselves working on themargins of their scopes of practice, bending the rules orhaving to implement creative solutions to address resourceshortages for their palliative patients. In this situation itwas the trust and knowing between long term colleaguesthat allowed nurses to do their job well. Similarly, physi-cians were better able to enact their role when they couldcomfortably delegate much of the care to nurses that theyknew and trusted. This long term knowing and workingtogether as a team also helped to build palliative carecapacity. In one of the study communities a core group ofphysicians and nurses dedicated to palliative care hadworked together for over a decade. This type of stableteamwork helped to ensure that newcomers were quicklysocialized into the palliative care philosophy. “As they’vehired new people to come in, it’s just expected that you willembrace the team’s way of doing things“ (A-1).Individuals who were well known and had contributedto the life of the community over time had somewhatprivileged positions when they became recipients of care.Participants who were prominent in the community weremore likely to be extremely satisfied with the carethey received than individuals who were less visible.Healthcare providers had a particularly privileged positionas expressed by one nurse. “I shouldn’t say it but they(healthcare providers) get really good care. Cause if it’ssomeone you know, let’s face it I’m sorry, it’s not preferen-tial, but there’s gotta be some perks for having given somuch in your career to people that are going through thesame thing, so we tend to go over and above. And we’rehappy to do it” (N-15).This knowing within the community also had disadvan-tages, the most important being the loss of privacy andanonymity. Participants spoke of the challenges of deliver-ing and receiving intimate palliative care to those whothey knew and worked with in the community and theimportance of being sensitive to those difficulties. “It’s verypersonal too, if somebody is doing some kind of personalcare on you. It’s different when your neighbour is coming inand cleaning you and bathing you and doing those sorts ofthings that normally [in an urban centre] I’ve never seenyou before“ (A-1). This participant went on to describe thesensitive, diplomatic work that it took to ensure indivi-duals received the care they required when this loss ofprivacy would keep them from seeking help.The loss of anonymity was also a significant drawback.Illness trajectories and grief were public events livedopenly before the community. Contact with healthcareproviders was often visible as individuals would meetfriends and neighbours in the emergency department orwould see homecare nurses coming to the door. In onesituation, the death of a family member became publiclyknown before the family was made aware. In anothersituation, a grieving family member was reluctant to leaveher home for weeks after the death of her husbandbecause she could not face her grief publicly. This lack ofanonymity was difficult for healthcare providers as well.So yea, it is a challenge, ... sometimes you’d like to beanonymous, you would just like to not walk down thestreet and see your chemo patients or whatever, youwould rather just be able to walk down the street andnot know, or you know, not know what they’re goingthrough. And it’s hard when you’re in a grocery lineup and you see the wife of somebody that has justdied, or the husband of somebody who’s just died, in abig city, it’s not gonna happen. But here it happens allthe time, and what do I say? How are you doing?You’re in a grocery line up, you know like you feel likeyou gotta say something but, you’re both gonna endup crying in the grocery line up (O-1).Participants had strategies for protecting the privacy ofindividuals within healthcare as expressed by this parti-cipant. “I’ve lived here all my life and I know a lot ofpeople in the community and when I do come in and Isee them there [in hospital], I try not to know them,because you know, really, nobody wants to know that I’mhere or somebody else is there“ (A-9). The anonymousgrieving available in urban communities cannot bemaintained in a rural community where many knowyour circumstances.Being Available and presentThe sense of knowing and being known that was soimportant in these rural communities inevitably led to anexpectation that those you know and who know youwould be available and present for you in your time ofneed. In general, healthcare providers valued being avail-able and present and took pride in meeting that expecta-tion although it came with a high cost. Many healthcareproviders spoke of being on call 24 hours per day evenPesut et al. BMC Medical Ethics 2011, 12:19http://www.biomedcentral.com/1472-6939/12/19Page 4 of 11though it was not recognized as part of their official role.Nurses provided their personal cell phone numbers tofamilies in the last few days of life, although this was notlimited to nurses as indicated by one anecdote from anurse. “Well if anything happens, you know in the night,I’m just going to give you my home phone okay. But don’ttell anybody. And the guy laughed because five peoplehad already done that“ (N-9). Nurses went out at night,and outside working hours, to put in catheters or pro-nounce death, funeral directors had family memberscome to their remote fishing cabins to make arrange-ments for their loved ones, and physicians “dropped by”on their way to holidays to check on patients living inremote areas. Even when healthcare providers movedoutside of the community there was an expectation thatthey maintain involvement. In one community there hadbeen a long term physician involved in palliative care,and even though he was now practicing in a remote com-munity, nurses still contacted him for support. Familymembers spoke of the importance of this availability.Note that in the following quote the nurse informed thefamily member that she was available 24 hours per dayeven though this was outside of her employment respon-sibilities and reimbursement.There’s no way I could find any way to improve it[palliative care]. Right off the bat [the nurse] informedus that she was available 24 hours a day. All we hadto do was phone her. Our family doctor phoned, andhe was available to come...so like everything that weneeded in terms of patient care was there, just as closeas a phone call, so I can’t think of any way that youcould improve that (F-5).Although this family member appreciated that help wasjust a phone call away, participants also spoke of theimportance of healthcare providers being physically pre-sent. A phone call was often not enough. In these com-munities there were two telephone resources available, apalliative hot line for healthcare providers and a nurseline for family care providers. The palliative hot line waslimited by the inability of the physician on the other endto provide orders. Likewise, family care providers neededon-site presence rather than distant support. In thewords of one administrator “They often need somebodywho can go to the home and be present and make tangibletheir support“ (A-10). In one community there was a“quick response” nurse who was physically available topatients and families at home in the late afternoon andevening. Even a brief participant observation with thisnurse illustrated the importance of this role in familysupport to solve problems and prevent hospital admis-sions. Unfortunately, budget for the position was cut dur-ing the study period. The nurse in this position hadextensive palliative expertise and so a scarce and valuablehuman resource was lost through the cut.This availability of healthcare providers was also some-what problematic. Although participants suggested that itcould lead to a high degree of satisfaction in their work,it could also lead to caregiver strain. For some, there waslittle choice about whether or not to be available. Ruralpalliative care has an inherent accountability that maynot be present in urban areas. In urban areas manyhealthcare providers care for strangers - there is noongoing obligation. However, participants in this studyacknowledged that their choices had consequences in thelong term. Neighbours and friends would remembertheir willingness, or lack thereof, to be available. Onenurse described the following situation.One of my physician friends is actually the god-fatherof my daughter. [He] called me up and said, ‘I’ve got apalliative patient who I know her, and I know herfamily, they go to the same church as I do, and she isdying of a nasty cancer, she’s really dehydrated andwe need to give her some fluid. Are you able to comeand help me start the IV?’ (N-1).This nurse went on to speak of the dilemma she feltbeing called at home by a friend to help with somethingthat was outside of her legal role. Nurses in particularstruggled with not knowing their professional and legalboundaries when they provided nursing care outside ofthe boundaries of the employer/employee relationship.They often found themselves providing care outside oftheir allowable hours or geographic distance and wereuncertain how to document care that should not haveoccurred. But as one nurse expressed, “People know eachother...how could you not?“ (N-2).Participants also recognized that this value of beingavailable and present was not necessarily universallyshared and so might not be sustainable. Older participantsin the study suggested the volunteerism upon which thistype of availability rested was diminishing in the youngergeneration. Younger physicians and nurses, or those whohad been recruited from other countries to fill shortages,may be less likely to do home visits and be available24 hours per day to palliative patients and families. Onephysician in particular spoke of how a patient’s ability tostay at home rests primarily upon the willingness of nursesto make themselves available off hours. “The new nurseseither aren’t willing to make themselves available or don’tunderstand the usefulness of making themselves that avail-able and so it’s actually much harder to look after patientsin the community“ (P-1). The consequences in this casewere that many more patients were being admitted to hos-pital within a few hours of death. This diminishing senseof volunteerism in rural communities was cited byPesut et al. BMC Medical Ethics 2011, 12:19http://www.biomedcentral.com/1472-6939/12/19Page 5 of 11numerous participants across the data. Participantspondered the effect on rural capacity for palliative care inlight of this diminishing willingness to be available24 hours per day.Community and MutualityAlthough urban legends typically highlight the indepen-dent rural spirit, in this study there was a strong emphasison the values of community and mutuality. As one Direc-tor of a Hospice put it, “In rural areas neighbours are notjust nice, they are necessary”. This value of communityand mutuality was evident in the tangible help provided topalliative patients and their families and in the generouscommitment to the community overall that created greatrural capacity for care.The family care providers in the study in particular pro-vided numerous examples of the ways in which membersof the community provided tangible care for them. Thisincluded everything from substantial fundraising, to homerenovations to accommodate care needs, to yard work andmeal preparation, to cleaning up homes after a death sothat family members would not have to do it. Often it wasthis support from the community that made family caregiving possible as depicted in the following quote from aretired nurse who had difficulty providing the extra carerequired for her husband while he was in hospital:“My friends found out that it was getting very hard on meand they just took over and said, ‘One of us will be therefor every meal to help feed him. Set him up, feed him, gethim back into position afterwards.’ If it wasn’t for them....”(F-11). Indeed sometimes the outpouring of concern fromthe community was overwhelming and participants spokeof declining further offers of assistance. However, thisvalue of community and mutuality was highly reciprocal.That is, those participants that had been involved in givingto the rural community also received the highest amountof support. Participants expressed concern for those indi-viduals who were new to the community, who had notbeen involved in community organizations such aschurches or who had been disenfranchised over the years.The same generosity expressed toward neighbours wasalso evident toward healthcare in general. Participantsspoke of the substantial donations that came in to supporthospice societies and other healthcare initiatives.The value of community was also evident in how closelyhealthcare providers worked together with a view to theentire rural community. This was particularly effectivewhen healthcare providers had their offices co-located andso much informal communication flowed seamlessly. Forexample, in one of our study communities the dischargeplanner and the homecare nurses had offices housed adja-cent to the acute medical unit. And so, even when formalpalliative rounds did not occur, there was a constant flowof communication between healthcare providers aboutpalliative patients even as they faced transitions in placesof care. All members of the team were aware and nego-tiated palliative patients’ needs on a daily basis, making forhigh quality and seamless transitions in care. There werealso rural ‘champions’ in these communities who hadworked over decades on behalf of the community to buildcapacity for palliative care. It was largely these champions,rather than the health authorities, that contributed to thesustainability of any sort of palliative program over time.However, this value of community and mutuality alsomeant that participants generally had a strong sense ofownership over healthcare in their community. Unpopularpolicies or changes initiated by the health authority oftenmet resistance. Indeed, there was a real tension betweenhaving the community raise substantial funds thatmade new initiatives possible but then having to turn theadministration of those initiatives over to health authoritydecision makers who were not located locally in the com-munity. Decision making by strangers, at a distance, con-travened all the values underpinning effective palliativecare in these rural communities. For example, there was ahighly contentious policy that palliative patients occupyinglong term care beds would be charged a per diem fee.Healthcare providers felt great moral distress whenpatients were transferred from their home or acute careinto a long term palliative care bed and then ‘charged todie’. Participants spoke of the covert strategies theyenacted to ensure that individuals would not have to go tothese beds if they chose not to. Indeed, it was ironic to seethe costs of keeping palliative individuals in acute care tocircumvent that per diem fee, a fee that was a nominalamount to the health authority but a substantial amountto the individuals having to pay the fee.In summary, the extensive amount of ethnographic datacollected in this study highlighted the important underly-ing values of being known, being available and present,and dedication to community and mutuality for the provi-sion of good rural palliative care. These values are essentialto take into account when considering healthcare changein rural communities. We would like to illustrate theimpact of not taking these values into account when achange was made in one rural community that had longterm negative effects on palliative care and communitymorale.A Case Study: Closure of an acute care facilitySome healthcare facilities are aging and difficult decisionsneed to be made about whether they should be updatedand kept open. These facilities have a prominent role inthe community when individuals have generouslydonated to them over time and many friends and lovedones have received care there. In one of our study sites adecision was made to close down the acute care facilityand create a regional hospital in a community twentyPesut et al. BMC Medical Ethics 2011, 12:19http://www.biomedcentral.com/1472-6939/12/19Page 6 of 11minutes away. Twenty-four hour ‘emergent’ care wascontinued through the emergency department in thehome community and the expectation was that the localphysicians would provide their services to the regionalhospital. However, after a short period of time the localphysicians withdrew from participation in the new facilitywhich created difficulties in providing adequate coverage.The solution was to hire hospitalists, physicians who‘covered’ the hospital for four days at a time on a rotatingbasis. However, what was largely unanticipated was theeffect on the local medical community, the resistance totravelling for care, and the effects of having palliativepatients cared for by individuals that did not know themwell.The local hospital had been a place where physiciansgathered, had coffee, and communicated vital informa-tion about individuals under care. They had immediatecontact with all of the care providing team as this wasthe facility where all of the offices were co-located. How-ever, once the hospital was closed these physicians nolonger carried on that vital communication and medicalcare became largely disconnected in the community.So now, the difference is there is no coffee room. Thereis no meeting of people. There isn’t much collegiality,I mean nurses have a segment of collegiality becausethey all work in one place and talk to each other. Themodern way of giving care, it’s very much more indivi-dualistic, who knows what I do anymore? It used to beso... so the discussion of problem issues whatever,there’s less intermingling (P-1).Patients and families were resistant to travelling to thenew facility for care. It was strange to them, they did nothave access to their own healthcare providers and it wasoften difficult to get there. Transportation can be difficultin rural communities and there is no obligation to providepublic transport between communities. As some partici-pants indicated, even though the adjacent community wasonly 20 minutes away, it was typically not a place theywould ever visit and so to go there for care was foreign.This resulted in the unfortunate situation of palliativepatients who required emergency symptom managementhaving to travel by ambulance to a strange community forcare and not necessarily having the support of family andfriends or even their own physician. The complexity oftriaging and solving the palliative care challenges was exa-cerbated by the fact that these hospitalists did not knowthe medical or social history of the patients. As one long-term rural physician suggested, it is knowing the patientand family well, over time that is the basis for the clinicalacumen that allows physicians to anticipate and solve pro-blems quickly and enable palliative patients to returnhome. In this situation, palliative patients ended up dyingin a hospital in a strange community. And although forurban residents a 20 minute commute to a hospital whichis strange to them may be a normal occurrence, for ruralresidents this situation was less than ideal.What was most interesting in this study was thatalthough this facility closure had occurred almost a decadeprior, participants still felt the change acutely. This depthof response can best be understood by recognizing how itviolates some of the highest values held by these rural resi-dents. At their most vulnerable time, some rural residentswere required to go to a strange place to die. They werenot known and they did not have the support of thosewho did know them as they could not be present andavailable. This reality was even more poignant when manyof these individuals had given generously to establish thenetwork of healthcare in their own community over theirlifetime and had the expectation that the care would bethere when they needed it. The knowing between health-care providers that filled in the gaps in resources in ruralcommunities was broken, and the sense of communityand rapport that comes from being co-located as a health-care team no longer existed - further exacerbating the iso-lation that many rural healthcare providers experience.This case study illustrates the essential importance ofsocial values in the analysis of what constitutes ethicallygood care at end of life. In this situation, what may havebeen a reasonable and prudent decision from a fiscal per-spective ran counter to the values that were most essentialto those residing in this rural community, thus leaving along lasting negative impression about the quality ofpalliative care.DiscussionWhile many of the ethical challenges we have identifiedare not new findings, our unique contribution to ruralhealthcare ethics and rural palliative care is the framingof these tensions in the context of a small number ofpervasive values that underpinned ethically good ruralpalliative care in the study communities. The Coalitionfor Rural Health Care Ethics [5] formulated an agendafor rural healthcare ethics that specifically identified ethi-cal concerns arising from the insufficient recognition ofcultural values, which this study addresses. The valuesframework proposed here enables a better understandingof rural culture, what constitutes good rural palliativecare and why that is so. Values are clearly one of the con-textual dimensions of rural culture that must be takeninto account when considering ethical issues in rural pal-liative care [14]. The values expressed by participants inthis study echo the broader Canadian social values inrelation to healthcare of a collective and caring responsi-bility for all citizens [20]. Further, they support Wilsonet al.’s [21] findings that suggested that rural persons feelthey have unique perspectives on a good death thatPesut et al. BMC Medical Ethics 2011, 12:19http://www.biomedcentral.com/1472-6939/12/19Page 7 of 11includes a deep commitment to community and thoseindividuals dying within their community.Although there is a dearth of literature that specificallyaddresses rural palliative healthcare ethics, our findingssupport those of others who have identified ethical ten-sions arising in the context of rural healthcare. The dualpersonal-professional relationships that form the corner-stone of knowing and being known in a rural communitypresent challenges to relational boundaries, confidentiality,and anonymity [2,5,22-25]. The interweaving of personaland professional relationships raises confidentiality con-cerns, for example there is evidence that rural patients andproviders worry about and may withhold documentationfor fear that other healthcare professionals, who may alsobe friends, will have access to the information [22,24]. Thevalue of knowing and being known helps us understandthe importance placed on a generalist model of palliativecare in rural settings, where palliative care is seen as a nor-mal and desirable aspect of continuous care from birth todeath [2,24,26]. Further, this value helps explain what maybe rural-urban differences in attitudes toward health careprofessionals at end of life. Gessert [4] and his colleaguesfound that the nature of family/health care provider rela-tionships differed along rural/urban lines. “Rural partici-pants demonstrated a more accepting and sympatheticattitude toward the healthcare providers, often offeringexplanations about any shortcomings. Their storiesreflected their strong belief that they had admitted theirrelatives to the care of their neighbours and friends”(p. 22). In contrast, urban families described adversarial,demanding interactions associated with admitting theirrelatives to the care of strangers who would not necessarilyprovide “the kind of care you would want to receive”(p. 23). For rural residents, the value of knowing and beingknown supports trusting relationships and confidence incare.It is evident that the work associated with being presentand available is challenging but generates a high degree ofcommitment from all involved in the provision of ruralpalliative care. In fact, some rural health care professionalsrefer to the palliative care they offer as a ‘way of life’ [2].Healthcare professionals take pride in their ability to meetpatient and family needs, often going to extraordinarylengths to care for patients, risking dangerous weatherconditions and working beyond their allotted hours [24].This socially oriented context of care that invites goingbeyond ‘the call of duty’ can be associated with high perso-nal cost [27] and can lead to a sense of isolation and burn-out [28]. It has been noted that there is also a high degreeof family caregiver burden associated with rural palliativecare [29]. So, while rewarding, being present and availableis not without risks. The development and maintenance ofpalliative care competencies is often mentioned as a chal-lenge for health care professionals involved in ruralpalliative care [30-32]. Difficulty acquiring and maintain-ing essential knowledge and skills has the potential toundermine providers’ ability to effectively be present andavailable. However, there is evidence that when healthcare professionals are present and available to each othervia such activities as mentoring and teamwork, competen-cies can be nurtured on the job and the experience ofbeing emotionally as well as practically supported is sus-taining [2]. Further challenges to the value of being pre-sent and available include healthcare workforce shortages,which are endemic in rural communities [33], eliminationof palliative positions, and secondment of palliative clini-cians to fulfill vacancies in other areas [24].The strong value of community and mutuality that char-acterized life in our study communities has been noted asa strength that supports high quality, integrated healthcare through social solidarity, close knit relationships, andcommunity commitment [17]. In the rural context, a spiritof cooperation helps to overcome resource challenges[26,32]. However, a trend we found toward diminishingcommitment to volunteerism has also been found byothers [31] and may compromise this strength over time.What is interesting is the matter of fact way that manyof our participants dealt with what have been seen ascommon rural ethical issues that have the potential togenerate moral distress. They were simply a part of rurallife and as our findings suggest, participants had creativeand diplomatic ways of dealing with issues like dual rela-tionships, confidentiality and privacy. Indeed, in somecases what might be considered an ethical issue from anurban perspective helped to fulfill the values that partici-pants felt were most important. For example, the loss ofprivacy and confidentiality was offset by the value ofbeing known and cared for by those who would haveongoing accountability within the community. Healthcareproviders derived great satisfaction from playing a vitaland meaningful role as part of community mutuality.What was particularly evident in the data were systemwide ethical tensions, and in particular how rural valuesplayed into broader relations of power that were mademanifest through healthcare policies and restructuring.Issues such as the per diem fee attached to formal pallia-tive care beds, the deletion of positions held by highlyvalued community members and the closing of a commu-nity hospital violated the values held by participants andas such became important ethical issues. Our findingsstrongly support Panelli et al.’s [34] argument that weneed to be continually testing policy discourse against thelived experience of health services. This is essential inrural areas where policies are often generated from thoseresiding in urban areas. Further, what this study illustratesis the need for a systems level approach to ethics, whatVernillo [35] has referred to as preventive ethics. The goalof preventive ethics is to “improve healthcare quality byPesut et al. BMC Medical Ethics 2011, 12:19http://www.biomedcentral.com/1472-6939/12/19Page 8 of 11identifying, prioritizing and addressing healthcare ethics ata system level” (p. 61). For rural palliative care this entailsfocussing on the system issues that violate deeply heldrural values and seeking to provide healthcare in a waythat optimizes rather than undermines rural capacity.The most compelling ethical issues from the perspectiveof participants in this study were related to system widehealthcare changes that restructured important healthcareresources in their community because of the negativeimpact on the provision of good palliative care. This wastypified by the closure of the community hospital whichresulted in residents having to travel to a neighbouringcommunity for essential care. The deletion of positionswithin the community that were occupied by valued com-munity members because of system wide budget shortfallswas also highly contentious. These policy decisions under-mined existing capacity within the rural community - butmore importantly were often misaligned with their corevalues. When participants made claims like “neighboursare not just nice, they are necessary” they were making cri-tical statements about the roles that community andmutuality play when facing challenges with limitedresources, whether those challenges be health, economicor other. When those social relationships were disrupted,vulnerabilities were created that were then difficult toredress. This supports Gessert’s [4] view that social con-tracts, those tacit understandings that bind communitiestogether, are important for examining rural end of lifecare.Other studies, and most importantly those coming outof the field of geography and health, shed important lighton these findings. Castleden et al. [36] used place as ananalytic tool to examine palliative care provision in ruralareas of British Columbia. They found that for rural resi-dents distance was not simply physical but rather an emo-tional construct imbued with social meanings and that theaesthetics of place were important. This concurs with par-ticipants in our study who were highly reluctant to traveleven relatively short distances (from an urban perspective)for care if the social and emotional aesthetics of placewere not there. One could argue that at the end of life,where quality of life is so essential, this issue is even morecompelling. Farmer et al. [37] conducted a qualitativestudy of older persons’ health service provision in ruralScotland. They suggested that misaligned perspectivesbetween management and rural residents are largely aresult of differing assumptions about how health and com-munity work. Rural community members valued commu-nity based solutions and tended to see health services,social care, transport, meals and housing as all connected.Managers and policy makers on the other hand empha-sized the sharing of services across communities andtended to view service delivery in silos. James’ [38] com-pelling analysis of the closure of rural hospitals inSaskatchewan highlights these different perspectives. Sheconcludes that although closing rural hospitals may makesense from an economic or social determinant of healthstandpoint (that is moving away from an emphasis on ill-ness-care to primary prevention) such closures often failto take into account the role that hospitals play in ruralcommunities. Hospitals are imbued with a meaning in thecommunity that includes issues of identity, security andeconomy. Even though logical alternatives are provided,these solutions fail to address the important role that thehospital plays in the overall social fabric of the community.This was illustrated well in our study where participantsstill acutely felt the loss of their community hospitalalmost a decade later. Other studies have likewise sup-ported the importance of rural community hospitals inend of life care [39-41].These findings are particularly relevant for initiativesthat propose that palliative care in rural communities isbest supported through centralized hubs of care locatedoutside of the community [42,43]. Although this is anintriguing idea, it should be considered as an additionalsupport to rural communities rather than a substitute forunique solutions to building capacity within the commu-nity. Evidence from this study illustrating how communi-cation flows in a rural community, the value of knowingand being known, the intermingling of social and collegialprofessional relationships, the pride that community mem-bers take in their localized resources, and the reluctance totravel even short distances for care if that care is deliveredby strangers suggests that the primary solutions should befound within the communities themselves. To do other-wise is to work against the very social fabric and valuesthat characterize rural communities.LimitationsAlthough the inclusion of four rural communities andextensive field work over a period of two years adds cred-ibility to study findings, we acknowledge that the studycommunities were within a single province and were allrural as opposed to remote. Hugo [44] has suggested thatrurality is largely defined by a set of social living conditionswhereas remoteness is largely defined by inaccessibility.Therefore, it would be difficult to extrapolate these find-ings to remote communities. Further, we are consciousthat simply by writing about rural values we run the riskof reifying the idea that rural culture is homogenous [14].In describing these values our intent is not to suggest thatthey characterize all of rural life but rather to show howthey play into building rural capacity for palliative careand how initiatives that disrupt these values also disruptcare. By virtue of our snowball sampling technique we arerepresenting the voices of those who tend to be most visi-ble in the community be we know less about those whodo not access palliative care. It is possible that they wouldPesut et al. BMC Medical Ethics 2011, 12:19http://www.biomedcentral.com/1472-6939/12/19Page 9 of 11espouse a somewhat different set of values. Indeed, partici-pants suggested that those who are most visible and influ-ential in rural communities have somewhat privilegedpositions and we know little about those who are not con-nected into the system.ConclusionThis study illuminated the core values of knowing andbeing known, being present and available, and communityand mutuality that provide the foundation for ethicallygood rural palliative care. These values offer the opportu-nity to better understand common ethical tensions thatarise in rural healthcare and key differences between ruraland urban palliative care. Context is important to under-standing ethical issues. In particular, these values shedlight on problematic health system and health policychanges. Clearly, when initiatives violate deeply held valuesand hard won rural capacity to address the needs of theirdying members is undermined, there are long lasting nega-tive consequences. The social fabric of rural life is frayed.We offer one way to re-conceptualize healthcare decisionmaking through consideration of critical values in order tosupport ethically good palliative care in rural settings.FundingThis work was supported by the Canadian Institutes ofHealth Research [grant number EOG 90308]. BP is sup-ported by a Canada Research Chair (Tier 2)Author details1School of Nursing, University of British Columbia Okanagan, 3333 UniversityWay, Kelowna, BC, V1V 1V7, Canada. 2Institute for Healthy Living and ChronicDisease Prevention, University of British Columbia Okanagan, 3333 UniversityWay, Kelowna, BC, V1V 1V7, Canada.Authors’ contributionsBP collected data, participated in analysis of the data and drafted themanuscript. JB participated in analysis of the data and assisted with draftingthe manuscript. CR collected data, participated in analysis of the data andassisted with drafting the manuscript. All authors read and approved thefinal manuscript.Competing interestsThe authors declare that they have no competing interests.Received: 28 March 2011 Accepted: 28 September 2011Published: 28 September 2011References1. Nelson WA, Greene MA, West A: Rural healthcare ethics: No longer theforgotten quarter. Cambridge Quarterly of Healthcare Ethics 2010,19:510-517.2. Robinson CA, Pesut B, Bottorff JL, Mowrey A, Broughton S, Fyles G: Ruralpalliative care: A comprehensive review. Journal of Palliative Medicine2009, 12(3):253-258.3. National Rural Health A: Providing hospice and palliative care in rural andfrontier areas. Kansas City, MO: National Rural Health Association; 2005.4. Gessert CE: Rural-urban differences in end-of-life care: Reflections onsocial contracts. In Ethical Issues in Rural Health Care. Edited by: KlugmanCM, Dalinis PM. Baltimore: John Hopkins University Press; 2008:15-33.5. Nelson W, Pomerantz A, Howard K, Bushy A: A proposed rural healthcareethics agenda. 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Sydney: University of NewSouth Wales Press; 2005:56-79.Pre-publication historyThe pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1472-6939/12/19/prepubdoi:10.1186/1472-6939-12-19Cite this article as: Pesut et al.: Be known, be available, be mutual: aqualitative ethical analysis of social values in rural palliative care. BMCMedical Ethics 2011 12:19.Submit your next manuscript to BioMed Centraland take full advantage of: • Convenient online submission• Thorough peer review• No space constraints or color figure charges• Immediate publication on acceptance• Inclusion in PubMed, CAS, Scopus and Google Scholar• Research which is freely available for redistributionSubmit your manuscript at www.biomedcentral.com/submitPesut et al. BMC Medical Ethics 2011, 12:19http://www.biomedcentral.com/1472-6939/12/19Page 11 of 11

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