Research The practice of palliative care from the ... · 7/8/2013 · The practice of palliative...

The practice of palliative carefrom the perspective of patientsand carers

Cathy Sampson,1 Ilora Finlay,2 Anthony Byrne,1 Veronica Snow,3

Annmarie Nelson1

1Wales Cancer Trials Unit, MarieCurie Palliative Care ResearchCentre, School of Medicine,Cardiff University, Cardiff, UK2Department of PalliativeMedicine, Velindre Cancer CareCentre, Cardiff, UK3Powys Health Board and SouthWest Wales Cancer Network,Bro Ddyfi Community Hospital,Machynlleth, Powys, UK

Correspondence toDr Cathy Sampson, WalesCancer Trials Unit, Marie CuriePalliative Care Research Centre,School of Medicine, CardiffUniversity, Cardiff CF5 2LQ, UK;[email protected]

Received 8 July 2013Revised 12 November 2013Accepted 9 December 2013Published Online First16 January 2014

To cite: Sampson C, Finlay I,Byrne A, et al. BMJSupportive & Palliative Care2014;4:291–298.

ABSTRACTObjectives The meaning that patients andcarers attribute to their experience of palliativecare is fundamental to the provision, practiceand evaluation of optimal care. This analysis aimsto establish contemporary key practices andpriorities from the perspective of patients andcarers.Methods Thematic analysis was applied to 594anonymised free text responses from patientsand carers documenting their experiences ofpalliative care.Results The emotional experience of care is themost significant aspect documented by patientsand carers. It refers to the process of care in keydomains of respect, renewal, refuge andrestorative care. Patients and carers describedcare as either enabling or directly provided. Theemotional experience of care was not confinedto psychosocial need and constituted a corepractice drawing on professional expertise andinterpersonal skills, some of which may be takenfor granted by staff themselves.Conclusions The emotional experience of careis examined as a practice rather than a topic,acknowledging that patients and carersdocumented the performance of care and theresulting impact in a variety of situations. Theemotional experience of care comprises keyaspects of contextual care facilitating autonomyand connectedness. It is embedded inrelationships mediated by communication andtenor of care. The perspective of patients andcarers places the emotional experience ofpalliative care centrally. This has implications forfuture service evaluation and the incorporationof this skill-based outcome alongside moretraditional outcome measures such as theamelioration of physical symptoms.

INTRODUCTIONThe application of appropriate outcomemeasures is dependent on understandingthe needs of service users.1 2 The

essential contribution of patient and carerperspectives to establishing needs andmeasuring service provision is recog-nised3 as is the need for clear definitionsof service goals, better measures of carerassessment and understanding of carers’unmet needs.4

However, natural tensions arise asservice providers and commissioners dem-onstrate awareness of the need to auditthe service, but focus on physical or trans-actional aspects rather than incorporatingrelational care meeting psychosocialneed.5 6 This underestimates the influencethat contextual care has on medical out-comes, an area which remains under-researched in terms of understanding andaccurate measurement.7 Contextual careis comparable with the original philoso-phy of holistic care in the focus on thepatient as part of a wider social networkand with psychosocial as well as physicalneeds.8 A significant factor in contextualcare remains the interaction of thepatient–professional relationship.9 Theperformance of emotional labour,whereby healthcare professionals activelymanage relationships with patients, isinformally recognised as a key skill facili-tating the patient journey.10 Throughemotional labour, the healthcare profes-sional manages emotion in order toenable the patients to feel reassured andable to express their own feelings and con-cerns. This professional work contributesfundamentally to the patient experienceof care but is not necessarily recognisedwithin the formal assessment of palliativecare outcomes.Although models of practice, instru-

ments and interventions based on con-cepts such as dignity preservation havebeen implemented,11 the challenge ofincorporating the perspectives of health

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Sampson C, et al. BMJ Supportive & Palliative Care 2014;4:291–298. doi:10.1136/bmjspcare-2013-000551 291

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professionals, health providers and service users intoan evolving definition of palliative care is ongoing.12

A regional palliative care planning group, encom-passing all aspects and settings of palliative care,commissioned a service evaluation questionnaire usinga combination of closed questions and a free textoption in order to base provision of excellent pallia-tive and end-of-life care on understanding the per-spectives of patients and their families.13

METHODSThe data set consisted of 594 completed free textresponses from the data corpus of 696 questionnairescomprising nine set questions on a Likert scale and afree text box inviting comments on any aspect of pal-liative care received (figure 1).In all, 594 completed free text responses from 696

questionnaires were analysed thematically by a qualita-tive researcher (CS) who was not involved in the

palliative care service, in commissioning or imple-menting the service evaluation. Cross-coding wascarried out to ensure methodological rigour (AN) andCOREQ guidelines for qualitative research were fol-lowed. Two-thirds of responses were from patientsand a third from family members who describedcaring roles and are referred to as carers.Thematic analysis was interpretive and inductive,

reflecting the open ended structure of the free textbox. Data were managed using NVivo computer soft-ware.14 Each data item was anonymised and codedusing data extracts as tree nodes and following six keystages: becoming familiar with the data, generatinginitial codes, searching for themes, reviewing themes,defining and naming themes and reporting the themes(figures 2 and 3).15

Interpretive analysis examined the content and thestructure of the responses, as the majority of partici-pants had structured the free text response into anoutline of change that had occurred as a consequenceof palliative care and how this change was accom-plished. This resulted in one higher level theme relat-ing to the overall process of care delivery and foursubthemes outlining key areas in which patients andcarers prioritised palliative care intervention. Thelocal R&D office was consulted to confirm the valid-ity and ethics of the approach taken.16

RESULTSThe emotional experience of careThematic analysis focused on the meaning participantsassociated with their palliative care experience.Patients and carers constructed free text responsesdocumenting the consequences of palliative care.Coding focused on a key emergent theme occurringacross all aspects and settings of care and

Figure 1 Free text box.

Figure 2 Stage 2 generating initial codes.

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characterising the palliative care experience. Thisemotional experience of care was coded to includeany reference to a change in attitude, affect or abilityto cope. These ranged from major shifts in attitudefrom feelings of despair to feelings of renewal, andmore subtle shifts where feelings of security, accept-ance or reassurance were expressed. There were foursubthemes associated with the emotional experienceof care: Respect, Renewal, Refuge and Restorativecare (figure 4).

RespectEmotional labour in healthcare is distinguished by thetherapeutic relationship, based on interpersonal skills,professional expertise and multidisciplinary cooper-ation.17 18 References to the atmosphere of thehospice or the tenor of care within the home madethe underlying palliative care philosophy visible.

I have been an in-patient on three separate occasions andas someone with terminal cancer I often feel vulnerableas my health slowly deteriorates. [hospice] is the only

place that I feel truly safe, and supported by the dedi-cated doctors and staff. I know that I can trust them tohelp me feel better.

Hospice inpatient

Patient and carer responses deconstructed emotionallabour into situations and practices illustrating how itis accomplished and the skills it draws upon. Specificskills relating to emotional support attested to theimportance of a responsive, empathic presence, wherethe changing needs of patients, carers and familymembers, whether physical or psychological, wereaccepted by staff.

[palliative care nurse] has been the strength andsupport that we have needed since diagnosis and livingeach day with cancer. She is always on the end of thephone and no question seems silly to her and shehelps us to face the future and realise that all the feel-ings we have are normal.

Patient: Hospital palliative care outreach service

Patients documented the importance of beingallowed to express their feelings or the presence of apalliative care professional as they accomplished theactive work of coming to terms with diagnosis andprognosis. Carers valued recognition of their role andbeing listened to, particularly in relation to fulfillingthe wishes of their loved ones. Consequences ofrespectful care were often practical, such as providingrespite care, but rooted in a cooperative, dynamicprocess with palliative care professionals.Patients prioritised being treated as a person rather

than seen solely in terms of their illness. The com-plexity of being accepted as an individual and alsoincorporated into the companionship of others drawsupon professional and interpersonal skills.

The staff create a wonderful atmosphere. They arecaring and understanding without being too overbear-ing. Everyone is treated and respected as an individualand yet you are made to feel like one of a large family.

Hospice inpatient

The mediation of these skills resulted in palliativecare that is patient focused and responsive rather thanprescriptive and generalised. References to the import-ance of a good death were coded solely from theresponses of carers and family members. Palliativecare provided practical but also emotional help inexplaining to the patient and their family what thelast stages of an illness involved. A significant aspectwas the importance to carers of fulfilling the patient’swishes. There was explicit reference of the patient’swish to die at home.

The care that my father received during the last fewweeks from the hospice at home team, district nursesand Macmillan nurse was first class and enabled himto die peacefully at home which is what he wanted.

Figure 3 Reviewing themes.

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Carer: Community palliative care service

However, the priorities around a good death werecommunication and the patient’s comfort, regardlessof where death occurred.

My husband was in the hospice for two weeks beforehe passed away. The care he received was wonderful.The staff were so caring and compassionate. The after-care I received was so helpful. It helped me through avery painful time.

Carer

RenewalRenewal incorporated changes of attitude, increased con-fidence or renewed agency. Patients specifically describedcoming to terms with diagnosis and prognosis.

This [palliative care] has helped me to be more positiveand has helped me to accept things and my problems.

Patient: Day hospice

Attitude change in some cases related to the percep-tion of palliative care itself, either by patients or theirfamilies.

I would like to say that a lot of people diagnosed withcancer think that ‘Hospice’ means death. My familythought it, but when I went to my drop in clinic I wasproved wrong. They were my life-line with emotionalsupport that my family couldn’t cope with.

Patient: Hospice out-patient

Understanding was associated with peer supportand with the specialist knowledge of the palliativecare service.

Your response to a time of crisis in my life meant somuch. Until then I despaired for the future but your

help made me see that I was unable to care for myhusband any longer. He is now settled into a carehome—not what I wanted for us, but I have to acceptmy limitations.

Carer: Community palliative care service

Patients and carers documented having confidencein the palliative care service, but more significantlydescribed changes to confidence brought about by theintervention of palliative care.

I was glad of the support at [hospice] and theyworked as a team to improve my confidence andlighten my anxiety. With their help, I recovered mymental, physical and emotional health.

Hospice inpatient

Aspects of care contributing to the ability to copevaried from practical help and specialist knowledge tobeing listened to. Multidisciplinary communicationand cooperation across agencies resulted in patientsand family members being enabled to approach theirsituation with renewed confidence.

[palliative care team] efficiently dealt with hospitaldelays in discharging [the patient] from hospital so wecould care for him at home in the last days of his life.They then dealt with all aspects of monitoring his careand co-ordinating the necessary agencies as well assupplying some of the light care and respite care forme. All the people who came to help were efficient,friendly and supportive. It was to [palliative careteam] I turned in moments of panic and to understandthe changes before death.

Carer: Community palliative care

Figure 4 Stage 5 defining and naming themes.

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An important aspect was the recognition by palliativecare staff that terminal illness presents a crisis for thewhole family.19 Being able to cope was constructed as acontrast between normality and exceptional circum-stances, where the contribution of palliative care madeit possible to negotiate everyday life.

I found them [palliative care staff ] very caring andunderstanding, easy to talk to and very helpful. Theyhave helped me to cope with a long term illness andkept me sane enabling me to go out and about andrelax for a few hours.

Patient: Community based palliative care service

The implication of recognising the enabling aspect ofpalliative care is that good care may facilitate change inareas of life not necessarily visible or directly apparentto staff.

RefugePalliative and hospice care was repeatedly described asa place of safety, alleviating loneliness and providing aspace to express fears that could not be expressedelsewhere.

I was admitted as an in-patient with breathing pro-blems and an inclination towards panic attacks.Immediately upon entering the hospice I calmeddown, was able to lay my baggage down. Hospiceinpatient

Refuge was also constructed as a psychologicalaspect of care where it was safe to express both posi-tive and negative emotions.

My problems were addressed and I felt like an individ-ual again. My problems were difficult to treat and myinability to express myself must have been frustratingbut I was shown patience and respect and was made tofeel safe and cared for until I was ready to moveforward again.

Patient: Specialist cancer hospital inpatient

Patients and carers valued flexible palliative carethat impacted on the whole family.

My husband is being visited regularly by [palliative carenurse] and he has been a very great comfort and hasalso provided positive help to us...We know that we cancontact him at any time and he will be there for us.

Carer: Community palliative care

Respondents distinguished the palliative care servicethrough consistent care delivery that included volun-teers as well as professionals.

I have received the most amazing care from bothnurses and volunteers. The unit is run smoothly and Ilook forward to my [weekly visit] as I know that anyproblems I have, medically or emotionally, will beaddressed and I will receive all the care I need

promptly and efficiently. They make a difficult prog-nosis so much easier to bear.


Good care was hallmarked by expertise and respon-siveness in addition to characteristics such as warmthand sensitivity.

This is a wonderful service, so caring, so efficient,from the top nurse to the volunteers.


Refuge, whether located in the hospice or embodiedin the palliative care skills of the professional in thehome, emphasised the importance of managing transi-tions between illness stages and helping patients andcarers to negotiate uncertainty.

RestorativeRestorative care relates to therapeutic aspects of careleading to enjoyment or relaxation and directs atten-tion to care of the body. Enjoyment of alternativetherapies shifted focus to the context of the body asnormal rather than diseased. A fundamental aspect ofillness is intimate care of the body. This has been thefocus of debate about the status of bodily tasks withinhealthcare, and the relationship for patients betweensocial well-being, emotional health and limited agencydue to illness.17 20 Patients described care and respectfor the body through use of alternative therapies.

The kindness and professionalism shown to me bystaff is exemplary. The complimentary therapy Ireceive is wonderful, a peaceful haven of normalityand I’m sure that without it I would find it far moredifficult to cope.


In addition to bodily deterioration and a terminaldiagnosis, patients may experience a social death.21

The contribution of good palliative care to beingacknowledged as an individual was highlighted byrespondents, many of whom expressed enjoyment andsatisfaction with the provision of alternative therapies.

The staff and volunteers at [hospice] have withoutexception been wonderful. So much help and comfort—hands on therapies, explanations of treatments anddrugs I’m having. Fellowship, laughter, relaxation,problem solving. You name it, they have done it...


Acceptance of both the ill body and the associatedloss of personhood were present in alternativetherapy, where the body was the site of respect ratherthan of pathology, and where shared experiences vali-dated rather than negated personhood.

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Concerns with palliative careConcerns constituted a minor aspect of the free textcoding but analysis enabled a deeper understanding ofhow patients and carers communicate their concerns.Questionnaire scores alone did not provide insightinto the nature of concerns but qualitative analysishighlighted that participants structured their responsesin two ways, each of which impacted significantly onquestionnaire scoring.Where individual care was good but the context of

care was poor, with participants expressing concernabout funding, facilities or provision of resources, ques-tionnaire scores reflected satisfaction. This acknowl-edged good palliative care but highlighted resourceconcerns, thereby providing support of the service andindicating that provision of better facilities, more staffand extension of service hours were priorities.

Excellent team done by a dedicated team. Treatmentand counselling second to none. Could do with theirown clinic, more money and resources.

Patient: Hospice community service

Where there was a concern with specific care thiswas reflected in lower questionnaire scores and relatedto issues around communication and consideration ofindividual need.

The care was very good in the beginning but I did feelas though as soon as my treatment had finished I hadbeen dropped. Although my palliative care nurse said Iwas able to telephone if there were any problems I feltas though I was bumbling along without any help orvisits—there were still many issues I wanted help with.

Patient: Community palliative care service

Patients and carers clearly distinguished betweentheir individual care and the wider context withinwhich palliative care functions.

DISCUSSIONPsychosocial dimensions of palliative care coexistalongside provision of pain and symptom control andare implicitly recognised by staff and patients.22

However, the challenges of collecting routine datafrom a population with a terminal prognosis, the diffi-culties of adequately defining aspects of psychosocialcare and the necessity of concentrating on measurableaspects of care to justify economic considerations haveled to tension between meeting more easily definedpractical outcomes and evaluating contextual out-comes such as tenor of care.23 24

Palliative and end-of-life care requires detailed record-ing of communication processes and service users’ feed-back in addition to expert consensus on demonstrableindicators that improve outcomes.2 25 The limitations ofthe scientific method in measuring humane aspects ofcare such as dignity and attentiveness are recognised, as

is the need for these factors to be fully recognised asimpacting directly on the quality of care.26

Free text analysis highlights the fundamentalimportance of the emotional experience of care topatients and carers. It describes the specific skills andpractices that constitute good palliative care, implyinga mobile set of skills united by a common philosophyand embodied in the palliative healthcare professional.Good care is distinguished by characteristics such asexpertise, enablement and efficiency within thecontext of respectfulness.Understanding the significance of the emotional

labour involved in caring is relevant to the practice ofpalliative care where it occurs in multiple settingsacross the community and not solely in institutionssuch as hospices or hospitals. The contribution ofvolunteers was significant, highlighting the import-ance of supporting their role.27

The practice of emotional labour is influenced bychanging expectations both organisationally and withinwider society.28 29 The changing consumer orientatedculture of healthcare has led to emotion work changingfrom an intrinsic contract between healthcare profes-sional and patient to caring as a commodity.30 31

However, although structural changes within the caringprofessions may impact on the satisfaction and ability ofprofessionals to carry out their duties, the core expect-ation of the therapeutic relationship remains a source ofsatisfaction.32 The challenge remains of acknowledgingskills that have been devalued, yet which healthcare pro-fessionals see as central to their role.10 Free text analysishighlights that the emotional experience of care ishighly valued by patients and carers and the attendantemotional labour is recognised and described revealingpalliative care as enabling as well as provided. This is sig-nificant as lack of control and agency are key concernsfor patients, in addition to the need for information,and practical and psychosocial support.33 Feelings ofhelplessness or lack of autonomy are also associatedwith greater difficulty for carers coping in stressful situa-tions and following bereavement.34

A distinction has been made between professionalcompetencies, which can be learnt, and professional jud-gements, which are based in practice and experience35

and arise from the dynamic relationship betweenpatients and professionals.36 Underevaluated aspects ofpalliative care include the professional and interpersonalskill of health professionals who have an intuitive under-standing of the care they provide but may not recogniseor define these aspects in a measurable way.37 Free textanalysis contributes to an understanding of the skillsthat are valued by patients and carers and offers insightinto the domains in which these aspects of palliativecare make a significant impact.

CONCLUSIONSPalliative care was founded on a holistic philosophyencompassing the physical, psychosocial and spiritual

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needs of patients with a terminal prognosis andtheir family.8 Contemporary palliative care acknowl-edges the contextual nature of care but there istension between evaluating formal aspects of caredelivery such as pain relief and service processes whilegiving equal recognition to aspects such as tenor ofcare.When service users were invited to complete the

service evaluation free text survey box to comment onany aspect of their care, the qualitative analysis indi-cated overall satisfaction with the palliative careservice. Service users structured their responsesaround their experiences of how care was delivered.This process of care delivery focused on the emotionalexperience of care and incorporated aspects associatedwith tenor of care such as agency, dignity and accept-ance. The free text analysis highlights the importanceof the emotional experience of care to patients andcarers, providing insight into specific examples ofwhere and how this care occurs. Specific expectationsfrom the perspective of patients and carers are of pro-fessionalism, expertise and facilitation. The emotionalexperience of care encompassed practical and psycho-logical outcomes but was characterised by the expres-sion of renewed agency where a shift in attitude hadoccurred.Free text analysis indicates that the impact of pallia-

tive care may not be fully evident to health profes-sionals or providers, and that aspects of palliative carepractice that may be either taken for granted or notfully recognised are significant for patients and carers.The importance of contextual issues for patients

and carers and the significance of the emotionalexperience of care indicate that they are essential com-ponents of good palliative care practice that should beincluded in future evaluation of the palliative careservice.

Funding This work was supported by Marie Curie Cancer Carecore grant funding to the Marie Curie Palliative Care ResearchCentre, Cardiff University. Dr. Annmarie Nelson and Dr.Anthiny Byrne's posts are supported by Marie Curie CancerCare core grant funding.

Contributors IF conception and design of the service evaluationin Wales and acquisition of core data; CS and AN analyticinput; CS article drafting; all authors article revision andapproval of the final version.

Competing interests None.

Ethics approval Dr Corinne Scott consulted local ethics boardand formal ethical approval not required.

Provenance and peer review Not commissioned; externallypeer reviewed.

Open Access This is an Open Access article distributed inaccordance with the Creative Commons Attribution NonCommercial (CC BY-NC 3.0) license, which permits others todistribute, remix, adapt, build upon this work non-commercially, and license their derivative works on differentterms, provided the original work is properly cited and the useis non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/

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