The clinical and social dimensions of prescribing palliative home oxygen for refractory dyspnea.

BACKGROUND: Chronic breathlessness is a significant problem in palliative care and oxygen is often prescribed in an attempt to ameliorate it. Often, this prescription falls outside the current funding guidelines for long-term home oxygen use. The aim of this qualitative study was to understand the factors that most influence Australian specialist palliative care nurses' initiation of home oxygen for their patients. METHODS: A series of focus groups were held across three states in Australia in 2011 involving specialist palliative care nurses. The invitation to the nurses was sent by e-mail through their national association. Recorded and transcribed data were coded for themes and subthemes. A summary, which included quotes, was provided to participants to confirm. RESULTS: Fifty-one experienced palliative care nurses participated in seven focus groups held in three capital cities. Two major themes were identified: 1) logistic/health service issues (not reported in this paper as specific to the Australian context) involving the local context of prescribing and, 2) clinical care issues that involved assessing the patient's need for home oxygen and ongoing monitoring concerns. Palliative care nurses involved in initiating or prescribing oxygen often reported using oxygen as a second-line treatment after other interventions had been trialed and these had not provided sufficient symptomatic benefit. Safety issues were a universal concern and a person living alone did not emerge as a specific issue among the nurses interviewed. CONCLUSION: The role of oxygen is currently seen as a second-line therapy in refractory dyspnea by specialist palliative care nurses.

Negotiating uncertain terrain: a qualitative analysis of clinicians' experiences of refractory suffering.

In palliative care, the witnessing of unrelieved (refractory) suffering takes its toll on all concerned; however, the effect on experienced palliative clinicians of witnessing such suffering has largely been unexplored. The aim of this study was to examine health care professionals' (nurses, doctors, and allied health workers) experiences of working with a patient's refractory suffering, together with their clinical management strategies. A qualitative research design involving semistructured interviews and an online questionnaire was used to collect the data. Seventeen experienced palliative care clinicians participated; 13 with face-to-face interviews and a further 4 by an online questionnaire. The overarching theme of negotiating uncertain terrain was common across all clinician narratives. In order for them to work successfully with a patient's refractory suffering, the clinicians had to negotiate areas of practice characterized by uncertainty, with no clear directions and with few expert guides. In reviewing their experiences, they identified within an overarching theme of negotiating uncertain terrain four subthemes: Changing Approach from "Fixing" to "Being With," Maintaining Perspective, Negotiating and Maintaining Boundaries, and Living the Paradoxes. This study highlights that dealing with patients' refractory suffering involves clinicians moving into uncertain and unexplored territory. For them to work effectively in this terrain the clinicians need wisdom, courage, and a commitment to journeying alongside the suffering person.

Patients' and family members' views on how clinicians enact and how they should enact incident disclosure: the "100 patient stories" qualitative study.

OBJECTIVES: To investigate patients' and family members' perceptions and experiences of disclosure of healthcare incidents and to derive principles of effective disclosure. DESIGN: Retrospective qualitative study based on 100 semi-structured, in depth interviews with patients and family members. SETTING: Nationwide multisite survey across Australia. PARTICIPANTS: 39 patients and 80 family members who were involved in high severity healthcare incidents (leading to death, permanent disability, or long term harm) and incident disclosure. Recruitment was via national newspapers (43%), health services where the incidents occurred (28%), two internet marketing companies (27%), and consumer organisations (2%). MAIN OUTCOME MEASURES: Participants' recurrent experiences and concerns expressed in interviews. RESULTS: Most patients and family members felt that the health service incident disclosure rarely met their needs and expectations. They expected better preparation for incident disclosure, more shared dialogue about what went wrong, more follow-up support, input into when the time was ripe for closure, and more information about subsequent improvement in process. This analysis provided the basis for the formulation of a set of principles of effective incident disclosure. CONCLUSIONS: Despite growing prominence of open disclosure, discussion about healthcare incidents still falls short of patient and family member expectations. Healthcare organisations and providers should strengthen their efforts to meet patients' (and family members') needs and expectations.

Refractory suffering: the impact of team dynamics on the interdisciplinary palliative care team.

OBJECTIVE: This qualitative study aimed to describe the skill sets that experienced palliative care clinicians possess when managing refractory suffering. METHOD: Thirteen tape recorded semi-structured interviews and four online questionnaires were completed by participants with at least two years clinical palliative care experience. The research team undertook cross sectional thematic analysis of the transcribed interviews. RESULTS: In the face of refractory suffering, team cohesion was identified as a key requirement to support the interdisciplinary team. However, team cohesion was found to be undermined by philosophical differences between team members, a paradigm shift concerning cure versus care and individual opinions regarding the chosen approach and levels of respect between the individual disciplines involved in the care of a person with a life limiting illness. SIGNIFICANCE OF RESULTS: The findings of this study highlight the precarious nature of the interdisciplinary team when significant challenges are faced. As a result of witnessing refractory suffering the division and fracturing of teams can easily occur; often team members are completely unaware of its cause. The findings of this study contribute to the limited literature on the nature of refractory suffering from the perspective of the interdisciplinary team.

Learning to work with the "unsolvable": building capacity for working with refractory suffering.

This article reports on a preliminary study of the experiences and perceptions of palliative care clinicians in developing capacity for effective, sustainable practice in their work with people who have refractory suffering. Members of a purposive sample of 17 clinicians (10 nurses, 5 doctors, and 2 allied health professionals) were either interviewed (13) or responded to an online questionnaire (4). The study's findings provide insight into these palliative care clinicians' experiences and their perceptions of the capabilities they require, effective learning methods for developing these capabilities, and the supports that can facilitate this capacity building.

When doctors disagree: a qualitative study of doctors' and parents' views on the risks of childhood food allergy.

OBJECTIVE: To examine the views of doctors which underpin clinical practice variation concerning an uncertain health risk, and the views of parents who had sought advice from these doctors, using the example of childhood food allergy. STUDY DESIGN: Qualitative study involving in-depth interviews and participant observation over 16 months. Focus groups and consultation audio-recordings provided corroborative data. SETTING: Three specialist allergy clinics located in one metropolitan area. PARTICIPANTS: Eighteen medical specialists and trainees in allergy, and 85 parents (from 69 families) with food allergic children. RESULTS: Doctors expressed a spectrum of views. The most divergent views were characterized by: scientific scepticism rather than precaution in response to uncertainty; emphasis on quantifiable physical evidence rather than parental histories; professional roles as providers of physical diagnosis and treatment rather than of information and advocacy; libertarian rather than communitarian perspectives on responsibility for risk; and values about allergy as a disease and normal childhood. Parents held a similar, but less divergent range of views. The majority of parents preferred more moderate doctors' views, with 43% (30 of 69) of families expressing their dissatisfaction by seeking another specialist opinion. Many were confused by variation in doctors' opinions, preferring relationships with doctors that recognized their concerns, addressed their information needs, and confirmed that they were managing their child's allergy appropriately. CONCLUSIONS: In uncertain clinical situations, parents do not expect absolute certainty from doctors; inflexible certainty may not allow parental preferences to be acknowledged or accommodated, and is associated with the seeking of second opinions.

Creating a research culture in a palliative care service environment: a qualitative study of the evolution of staff attitudes to research during a large longitudinal controlled trial (ISRCTN81117481).

This study investigated the impact of a three-year randomized control trial of different models of service provision on palliative care staff associated with the hospice where the trial was being conducted. Eleven open access de-identified qualitative focus groups were held over a period of three years: three months into the trial, one year after its inception, and at the end of the trial. Four staff groups were involved: inpatient hospice nurses, palliative care outreach nurses, medical palliative specialists, and administrative staff and social workers. Initially the impact of the trial produced high levels of staff stress which largely diminished over time, to be replaced by enthusiasm for the changes achieved and sadness that post trial the perceived benefits gained would be lost. When attempting to change a clinical culture to incorporate research, and in particular where increased staff workload is involved, highly interactive levels of communication and valuing of staff input are required to minimize the stress and burden of this imposition.

Quality in qualitative research.

Qualitative research most commonly involves the systematic collection, ordering, description and interpretation of textual data generated from talk, observation or documentation. A report of qualitative research should address the following criteria: Clarification and justification; Procedural rigour; Representativeness; Interpretative rigour; Reflexivity and evaluative rigour; and Transferability. Because of the limitations on article length for the Medical Journal of Australia, authors should focus on only a couple of aspects of the research, rather than trying to present a simplified description of multiple aspects.

Parental food allergy information needs: a qualitative study.

OBJECTIVE: To examine information needs and preferences of parents regarding food allergy. DESIGN: Qualitative study including in-depth semi-structured interviews and focus group discussions. Data were audio-recorded, transcribed verbatim and analysed using the constant comparative method, aided by participant checking of interview summaries, independent reviewers and qualitative analysis software. PARTICIPANTS: 84 parents of children with food allergy. SETTING: Three paediatric allergy clinics and a national consumer organisation. RESULTS: Most parent participants had received third level education (72%) and 39% had occupational backgrounds in health and education. Parents experienced different phases in their need for information: at diagnosis when there is an intense desire for information, at follow-up when there is continuing uncertainty about allergy severity and appropriate management, and at new events and milestones. They preferred information to be provided in a variety of formats, with access to reliable individualised advice between clinic appointments, within the context of an ongoing relationship with a health professional. Parents wished to know the reasoning behind doctor's opinions and identified areas of core information content, including unaddressed topics such as what to feed their child rather than what to avoid. Suboptimal information provision was cited by parents as a key reason for seeking second opinions. CONCLUSION: Parents with children with food allergies have unmet information needs. Study findings may assist in the design and implementation of targeted educational strategies which better meet parental needs and preferences.

Communication and decision making for patients with end stage diseases in an acute care setting.

Twenty retrospective patient case studies were collated in an acute care teaching hospital using a case note audit and in addition interviews were undertaken with 40 nursing staff following the deaths of these patients in order to: analyse the end of life care received; identify any deficits in care provision and to enable the nursing division to target any inadequacies in care found. Findings indicated that communication between medical and nursing staff and between nursing staff, patients and family around end of life issues continue to be poor and that discussions regarding NFR decisions occurred too close to death, creating unnecessary stress for both patients and families. Recommendations regarding palliative approaches in the acute care setting are detailed.

Dying for attention: palliative care in the acute setting.

BACKGROUND: Palliative care has emerged as a specialist discipline in the past 25 years. However in relation to acute hospitals, a sense exists that patients who are receiving end of life care may not experience support which fully reflects appropriate palliative care management. OBJECTIVE: This study aimed to analyse the end of life care received by patients in the acute wards of a busy teaching hospital. DESIGN: Retrospective analysis using multiple methods including: case note auditing and interviews of key staff was used to determine the quality of end of life support provided to an opportunistic sample of patients who died in acute care wards. SETTING: The research site is a 250 bed teaching hospital in South Australia. SUBJECTS: A medical record audit using an opportunistic sample of 20 recently deceased patients from acute wards was used. For each patient, interviews were also conducted with two nurses (n = 40) selected on the basis of having a major care involvement. MAIN OUTCOME: A range of strategies for enhancing the end of life care for patients in acute wards were determined, including support for application of a Palliative Care Advanced Disease Pathway. RESULTS: The lack of appropriate assessment and documentation indicates that major opportunities for enhanced service provision exist both in relation to physical care and even more significantly in relation to psychosocial and spiritual care. CONCLUSIONS: The end of life care provided for patients reviewed in this study indicates a far from ideal situation in the acute hospital wards of the research setting. An eagerness from the nurse participants in the study for tools and further support in their practice was noted and augurs well for future developments within the research site.

A palliative approach or specialist palliative care? What happens in aged care facilities for residents with a noncancer diagnosis?

This article presents results of the second stage of a research project which explored the palliative care needs of 69 residents with a noncancer diagnosis in South Australia. Extensive data were collected prospectively from case notes, and resident and staff interviews over a 10-week period. Residents were suffering multiple conditions and were highly dependent for activities of daily living. Most residents' care was consistent with a palliative approach, with only three residents in the study referred to a specialist palliative care service. However, for some residents, pain and symptom management were not always adequate, and referral to a specialist palliative care service would have been appropriate. This research indicates that, with additional education, it could be possible to extend the principles and philosophy of palliative care by adopting a palliative care approach within aged care facilities.

Documenting end of life decisions in residential aged care facilities in South Australia.

OBJECTIVE: This research examined the provision of palliative care for residents with a non-cancer diagnosis including the use of advance directives and advance care planning as part of palliative care policies in residential aged care facilities in South Australia. There are no guidelines for recording residents' wishes if they are no longer competent. METHODS: Stage 1 involved a survey of 90 randomly selected aged care facilities. Stage 2 involved case studies of 69 residents, appropriate for palliative care, from 17 facilities and interviews with 15 directors of care. RESULTS: Most residential aged care facilities used forms to record residents' wishes about end of life care, but there was little consistency. Some had no palliative care policy and few facilities required a formal advance directive. Not all residents had formally appointed a proxy. CONCLUSIONS: Residential aged care facilities should be required to develop and implement a palliative care policy acknowledging the Accreditation Standards and State legislation and including a simple tool for advance care planning. Case conferencing could assist in discussing and documenting the resident's wishes. Public education is essential to increase community and professional awareness in order to promote empowerment for the increasing number of older people who will die in residential aged care facilities.

Identification of patients with noncancer diseases for palliative care services.

OBJECTIVE: To identify criteria for measuring the eligibility of patients with end-stage noncancer diseases for palliative care services in Australian residential aged care facilities. METHODS: No validated set if guidelines were available so five instruments were used: an adaptation of the American National Hospice Association Guidelines; a recent adaptation of the Karnofsky Performance Scale; the Modified Barthel Index; the Abbey Pain Score for assessment of people who are nonverbal and a Verbal Descriptor Scale, also for pain measurement. In addition, nutritional status and the presence of other problematic symptoms and their severity were also sought. RESULTS: The adapted American National Hospice Association Guidelines provided an initial indicative framework and the other instruments were useful in providing confirmatory data for service eligibility and delivery.

Nursing documentation: non-physical dimensions of end-of-life care in acute wards.

AIM: to explore discrepancies between nurses' knowledge and their documentation of issues of psychosocial, spiritual and cultural aspects of palliative care, evidenced clearly in recent nursing research into end-of-life care in an acute care, teaching hospital. DESIGN: the study involved a retrospective patient case-note audit of an opportunistic sample of 20 patients deceased recently and interviews of the two nurses most involved in the care of each patient (n=40). FINDINGS: this research indicates that nurses in acute care settings often recognize, sometimes explore, but infrequently document psychosocial, spiritual and cultural aspects of care. CONCLUSION: there is a strong need for: (1) education about both the impact of non-physical dimensions of patients' lives and the effective documentation of these dimensions; and (2) up-grading of documentation tools to better facilitate documentation of non-physical aspects of palliative care.