DescriptionA PhD study.
Following the abstract from the Thesis:
Patients with heart failure might experience unmet psychosocial and existential needs from the diagnosis onset, for which person-centred palliative care have shown relief. Compared to malignant disease the access to palliative care is restricted for the HF patient. In addition, the palliative care understanding, skills and competences in cardiology needs improvement. This dissertation is based on a research project conducted at a local hospital in Region Zealand.
The overall aim of the PhD study was to develop, integrate and evaluate the significance of a general palliative care approach in a heart failure clinic based on patients’ narratives.
Inspired by action research, the study was conducted in four phases following a pre-phase. In the pre-phase, I contacted the cardiac management at Næstved, Slagelse and Ringsted Hospitals and formed a partnership between cardiology, REHPA and PROgrez. In addition, I spend a few days at the heart failure clinic and had informal talks with nurses. This made me realise that a learning strategy on person-centred palliative care was needed.
In the first phase, I identified unmet needs for patients living with heart failure. Moreover, I interpreted the dominant professional perspective from cardiology as a barrier for the heart failure patients to express needs. In collaboration with co-authors of study I, we identified the potential of using a narrative approach in palliative care interventions. As the findings from study I could not be transferred directly to our setting, we (researcher and professionals) chose to work with the S’ approach.
The second phase of the project was the development phase. A seminar, a study trip to Hospice Djursland and a workshop provided education on palliative care and the possibility to discuss perspectives across palliative care and cardiology. Furthermore, it produced insight into the development of a person-centred palliative care intervention based on narratives.
In phase three, we piloted the intervention and with a few adjustments, we integrated it in the current standard treatment trajectory of heart failure.
The last phase was the evaluation phase, in which I used both observational design, in-depth interviews and feedback meetings to understand the significance and barriers of person-centred palliative care in a heart failure clinic.
Findings from the project have been reported in four scientific papers. Papers I and II present findings from phase one, Paper III from phase two and Paper IV from phase four.
Paper I is a systematic conducted integrative review study. It examined the use of personal narratives in palliative care interventions for people with life-threatening illness in a hospital setting. The study is based on 24 research papers: eight qualitative, 14 quantitative and two mixed methods. Providing evidence on dignity therapy, legacy building, outlook, short-term life review and life review. Data analysis showed that common to these interventions is a shared theoretical understanding and therapeutic aim. In addition, we found that a clinical application in a hospital setting was acceptable but flexibility regarding the setting and the needs of the patient is necessary.
Paper II reports from a qualitative study of the experience of living with heart failure and current treatment. This study is based on six individual interviews. Data analysis showed an understanding of living with heart failure as a continuous Sisyphean struggle with unmet psychosocial and existential problems. In addition, this study showed how the dominating professional perspective in standard heart failure treatment discouraged the patient to convey needs of such character.
Paper III reports from the workshops during the development phase. Data consisted of notes, field notes and summaries from two workshop days. The method used tension as a facilitator for dialogue and this enabled the process of generating insights into different perspectives. Furthermore, it created relational engagement among interdisciplinary professionals and ownership with the development process. The analysis showed that integrating palliative care principles into cardiology is a complex issue. Acknowledging such considerations, we designed an intervention centred on the elements of standard heart failure treatment, integrated palliative care sessions applying a narrative approach and monthly interdisciplinary conferences.
Paper IV reports on an outcome evaluation study focused on the lived experience of the heart failure patient. This study is based on 12 individual interviews. The study showed that heart failure patient found the integrated palliative care intervention significant in various ways. They felt recognised and ultimately they felt supported in both physical, psychosocial and existential problems.
In conclusion, the findings of this PhD study indicate that a narrative palliative care approach in a heart failure clinic was meaningful, acceptable and possible given the right conditions. Professionals conveyed a change when it comes to including the patient perspective in care and treatment. However, on an organizational level, changes have not been persistent and a palliative care approach has not been fully integrated. For an organizational change, policy makers must first recognize lifeworld rationale as valuable arguments in health care. Because there is no reason to doubt the importance of person-centred palliative care in a life-threatening illness like heart failure. Hopefully, this PhD can help contribute to such a debate.