What do we mean by palliative nursing? (and what does it mean to be a palliative nurse) Catherine Walshe

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1 What do we mean by palliative nursing? (and what does it mean to be a palliative nurse) Catherine Walshe

2 Defining palliative care nursing Provision of care? Any nursing care to palliative care patients, or more specialist forms of nursing? Differentiate from other forms of nursing, or other providers of palliative care?

3 US: the hospice and palliative nurses association Competent professional nursing care is critical to achieving the patients, families, and communities goals of care through the end of life. Support of hospice and palliative care research and education is necessary to ensure that care is evidence-based, effective, and appropriate. Their statement emphasises issues such as the consistent presence of the nurse, holistic care, the maximising of patient autonomy, dignity healing and comfort, and skills such as assessment, critical thinking, symptom management, communication and developing a professional knowledge base

4 Europe: EAPC nursing statements for clinical practice The patient: Clinical assessment skills and evaluation of patient care The patient and family: Impact of illness, communication skills, bereavement care The interdisciplinary team: team dynamics and nurse leadership Self awareness-ethical issues: respect, autonomy, dignity, coping styles Training for educators in palliative care: Empowering patients Training in palliative care research: Evidence based practice pdf

5 Focus on nursing care in the home setting Case study research investigating referral practices within 3 Primary Care Trusts (UK primary care organisations). Data collection: interviews, observations; documentary evidence Case study General services Specialist services Key informants Patients A 5 DNs 4 specialist nurses 1 commissioner 1 3 GPs 1 Nurse practitioner B 4 DNs 3 specialist nurses 1 commissioner 4 3 GPs 2 AHPs 1 AHP 1 Consultant 5 DNs 3 specialist nurses 1 cancer manager 5 C 6 GPs 1 AHP 1 senior district nurse 1 Consultant

6 Two main issues: How professionals perceive their own role in community palliative care How professionals perceive the roles of others in community palliative care And how these issues interacted. So the roles of nurses and how they enacted them were very important to their practice

7 What being a palliative nurse meant to nurses Autonomy I can basically do what I like with my time, so long as I meet my target that I have set myself, you know. (Specialist community palliative care nurse) Ownership I was quite protective really of the palliative care patients I certainly wouldn t hand any of my patients over to social services or social care if they were palliative. (District nurse)

8 What being a palliative nurse meant to nurses Relationships Just, well I think it makes your life easier, the way you care for somebody, because you understand the things they ll accept and the things they won t, you can talk them round when you know them, and you understand the family dynamics. And they get to know you, they get to know you as people, you know, as well, and they learn to trust you. (District nurse)

9 Relationships patients views I ve got to know them pretty well [district nurses] so they ll have a laugh with you, and they are pretty good and that. (Patient) Its so helpful that you have the rapport, because now we re at this stage, it would be more difficult to open up to strangers because when the time comes when I need them more, which I m going to, I won t be having strangers in, and I don t think that would be very nice for me (Patient)

10 What being a palliative nurse meant to nurses Reciprocity If we achieve as a team somebody who dies peacefully at home, it s such a feeling of great satisfaction, that you think it was worth all the hassle and the intervention and those hours spent extra working through my lunchtimes, and all the rest of it, so that that patient got what they wanted, so it s a good feeling. (District nurse)

11 What patients thought about palliative nurses Choice and knowledge I: Is that what you expected the district nurses to do? Patient: Not really. I: What did you think the district nursing service would do for you before they actually arrived? Patient: Well, quite honestly, I didn t think. In fact when me GP said it, would you like me to refer you to the Macmillan nurse, I was shocked. I was just shocked. (Patient)

12 Generalist and specialist palliative nursing roles Time and expertise You hear cues, you pick up on cues, and you, you take them forward, and I m not always convinced that district nurses do that, that a patient may say something, they can either block it or pick up on it, and it depends how many more visits they ve got in the diary that day. (Specialist nurse)

13 Generalist and specialist nursing roles Variability That s a bad thing about district nurses, we all, we all do it slightly differently, and we will, we will see [palliative care] patients what other teams won t see (District nurse) I ve realised that district nursing teams don t always work in the same way, and that has been a bit of a surprise to me. (Specialist nurse)

14 What does this tell us about palliative nursing? It tells us what palliative care nurses in the community value about their role. It tells us that specialist and generalist nurses have different roles, but these may not always mesh well. It tells us that patients value such nursing care, but don t know to request it. It does not tell us how to improve nursing care, or what good palliative nursing care looks like. It doesn t tell us how to use nursing skills to improve outcomes.

15 The next steps Understand by observation how nurses enact their caring role at home with palliative care patients. Understand what are the outcomes of home nursing care that palliative care patients and their carers value. Develop a theoretical model of home palliative care nursing practice to guide and develop nursing

16 Hot off the press. Ethnographic study observing district nurses in practice in their work with palliative care patients, followed by interviews with the patient and their nurse to explore the observation. Only recruited about 1/5 th of district nurses/patients so far.

17 Hot off the press. It appears that District nurses have a strong role monitoring patients (symptoms, medication, trajectory) and coordinating care. Their relationship with patients is the medium through which they offer this care. Patients and carers value the consistency of their presence, the comprehensive nature of the care they offer, and their approachability. Patients and carers describe the relationship as one where they can be themselves.

18 Conclusions There is a strong interaction between what palliative nurses offer to patients, and what nurses themselves value about such care. Palliative nursing is important to patients and carers. There is a real need for more research which draws its conclusions from the observation of nurses practice. This work needs to be drawn together in a clearer way to develop a theoretical model of palliative nursing practice that can be rigorously evaluated. This needs to be reflected in nurses educational preparation for practice.

19 References and acknowledgements Further reading about this study: Walshe C., Chew-Graham C., Todd C. & Caress A. (2008) What influences referrals within community palliative care services? A qualitative case study. Social Science & Medicine 67, Walshe C., Caress A., Chew-Graham C. & Todd C. (2008) Implementation and impact of the Gold Standards Framework in community palliative care: a qualitative study of three Primary Care Trusts. Palliative Medicine 22, Walshe C., Todd C., Caress A. & Chew-Graham C. (2008) Judgements about fellow professionals and the management of patients receiving palliative care in primary care: a qualitative study. British Journal of General Practice 58, With thanks to Chris Todd, Ann Caress and Carolyn Chew-Graham who supervised the case study research, and to Karen Luker and Sheila Payne who are my mentors for my current research.

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