Developing palliative care practice in the community

Storey, Les; O’Donnell, Lee; Howard, Anne

doi:10.7748/ns.17.8.40.s60

Cited by 3 publications

(3 citation statements)

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“…One of the key objectives in our study related to the Preferred Place of Care (PPC a ) tool. This originated as part of a District Nurse education programme [15-17] to encourage discussion of ACP. The study aimed to explore if, when and how PPC was used to facilitate conversations about patients’ preferences (for place of care and death) and how these were documented.…”

Section: Introductionmentioning

confidence: 99%

After you: conversations between patients and healthcare professionals in planning for end of life care

et al. 2012

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BackgroundThis study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients’ preferences for place of care (and death) were facilitated and documented.MethodsThe study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N = 18; 10 men; 8 women; median age 75); nominated relatives (N = 11; 7 women; 4 men; median age 65) and healthcare professionals (N = 15) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study.ResultsPatients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions.ConclusionsThis study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.

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Section: Introductionmentioning

confidence: 99%

After you: conversations between patients and healthcare professionals in planning for end of life care

et al. 2012

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“…Around 90% of patients facing death choose to die at home (Tzuh et al, 2003), but only about 20% achieve this (Ellershaw & Ward, 2003). Home care nurses play a primary role in both organizing and delivering continuous, personalized, and holistic care for patients and their families facing life-threatening illness (Storey et al, 2002;Yuen et al, 2003). Appropriate care for these patients requires great competence, experience, expertise, and skills from their home care nurses (Groot et al, 2005).…”

Section: Introductionmentioning

confidence: 99%

Providing care and sharing expertise: Reflections of nurse-specialists in palliative home care

Arnaert

Wainwright

2009

Pall Supp Care

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Nurse-specialists play a key role in palliative home care as both carers and as resources of expert knowledge for other home care nurses caring for palliative patients. As the population ages, the health care system will be faced with increasing requests for high-quality palliative home care. The results of this study demonstrate that, from the perspective of the nurse-specialists of NOVA-Montréal (a nonprofit social and health service organization), nurse-specialists can work collaboratively with home care nurses to improve patients' quality of care and their quality of life. Moreover, patients and their families would benefit from the more widespread establishment of palliative care teams within community health organizations.

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“…The barriers to accessing support included lack of information about and confidence in external services, and fear of upsetting their partner. Many patients prefer to die at home but, in practice, many are unable to do so due to inadequate specialist palliative care (Storey, ). Although studies suggest that patients prefer to die at home, several carers in this study expressed anxieties about this, fearful of what their partner's declining health and ultimate death would be like.…”

Section: Discussionmentioning

confidence: 99%

A terminal diagnosis: The carers’ perspective

Riley

Fenton

2007

Couns and Psychother Res

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This qualitative study explored the views of spouse carers in relation to the emotional impact of caring for a partner with a chronic or terminal illness. The study population consisted of nine full-time spouse carers, recruited using a snowball sampling strategy. Semi-structured interviews took place in the carers' homes. These were recorded and transcribed verbatim. The data were then analysed using constant comparative analysis. Themes identified included the emotional and physical health of the carer, personality changes in the spouse, relationship issues, denial, anticipating death, accessing support and coping strategies. Findings indicate that these carers experienced a whole range of feelings and emotions, which impacted on their health and wellbeing. They included fatigue, stress, distress, anxiety, depression, feelings of isolation and suicidal thoughts. These were particularly profound around the time of diagnosis, end of treatment, during a relapse and most particularly around the time of death. An increasing number of terminally ill people are now expressing a preference to be cared for at home. The potential risks to the health of caregivers therefore need to be taken into account. This study highlights the importance of assessing the needs of carers in order to identify those at risk of compromised health, which would then allow those requiring support to be offered prompt referral to specialist services.

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Developing palliative care practice in the community

Cited by 3 publications

References 0 publications

After you: conversations between patients and healthcare professionals in planning for end of life care

After you: conversations between patients and healthcare professionals in planning for end of life care

Providing care and sharing expertise: Reflections of nurse-specialists in palliative home care

A terminal diagnosis: The carers’ perspective

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