WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM ‘PALLIATIVE MEDICINE’, THE OFFICIAL RESEARCH JOURNAL OF THE EAPC
Each month, Professor Catherine Walshe, Editor-in-Chief of Palliative Medicine, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in’ Palliative Medicine’ which is Open Access.
Hannah Seipp, Katrin Kuss and Michaela Hach, members of the ELSAH study group in Germany, introduce the background to their longer article selected as ‘Editor’s Choice’ in the December 2021 issue of ‘Palliative Medicine’.
To improve and to evaluate care, it is relevant to understand what constitutes successful care. In our ELSAH-study (‘Evaluation of Specialised Outpatient Palliative Care by taking the example of Hesse’) we investigated what constitutes successful specialised palliative home care. When thinking about success in this setting everyone agrees that the evaluation must be carried out by those who are directly involved: patients, their families, and health professionals working in or collaborating with specialised palliative home care teams. So, we asked these groups what is important to them and what constitutes quality from their point of view.
Mrs G welcomed me for an interview in her apartment. She led me to the dining table, where her daughter had prepared coffee. Walking was exhausting her, and the interview lasted just a few minutes, because she became tired. But in this short time, she expressed what was actually relevant for her and her family:
“The most important thing for them is surely that I feel reasonably well, right? And that I have no pain. Because everyone knows where that goes.”
She valued, that the specialised palliative home care team did not only care for her, but also included her family.
After this interview I went to her daughter Mrs S, living in an apartment on the floor above. She told me that she was impressed by the friendly manner, respectful treatment, and medical expertise of the nurses and physicians of the specialised palliative home care team.
“I always find that they’re very nice and friendly with my mother. […] I think that’s also a really great thing, […] they often laugh together.”
Mrs S described how she felt reassured in caring for her mother at home, because she could call the team at any time.
Both interviewees describe issues that make specialised palliative home care successful for them. Across all participants we found that for successful specialised palliative home care treatment of complex symptoms has a high priority. Further, it is important that care is performed comprehensively. That means it is integrated into the care network, pays attention to the family and also considers spiritual topics and patients’ worldviews. As Mrs S described, a sense of security and the quality of relationship between those affected and the specialised palliative home care team is of particular importance in home care. Patients and their families appreciated the respectful, friendly, empathic and sometimes even humorous communication. Further, it is important that individual personal needs and wishes are considered, and that self-determination is promoted and respected. (1)
The overall objective of our ELSAH project, part I, was to develop and to implement a set of outcome measures, which particularly takes into account the perspective of the patients and their families. Therefore, the above findings served as an important basis. In subsequent study phases, we tested and implemented this set of measures in all 22 teams providing specialised palliative home care for adults in the state of Hesse, Germany. (2) In a second part of the ELSAH-study, we searched for specialties of specialised palliative home care for children and young adults. (3)
Our findings show that success in specialised palliative home care is complex. Knowing the relevant issues can help to better address the patients’ and family’s needs.
- Seipp H, Haasenritter J, Hach M, et al. How can we ensure the success of specialised palliative home-care? A qualitative study (ELSAH) identifying key issues from the perspective of patients, relatives and health professionals. Palliat Med 2021, 35: 1844 –55. doi:10.1177/02692163211026516.
- Kuss K, Seipp H, Becker D, et al. Study protocol: Evaluation of specialized outpatient palliative care in the German state of Hesse (ELSAH study) – work package I: assessing the quality of care. BMC Palliat Care 2018; 17: 111–19. doi:10.1186/s12904-018-0363-8.
- Schütze D, Engler F, Ploeger C, et al.: Specialised outpatient paediatric palliative care team-parent collaboration: narrative interviews with parents. BMJ support Palliat Care, 2021, online first. doi:10.1136/bmjspcare-2020-002576.
More about the authors
Hannah Seipp, MSc Public Health, research associate at the Department of General Practice and Family Medicine, Philipps-University of Marburg, Marburg, Hessen, Germany.
Katrin Kuss, MSc Physiotherapy, Doctor of Medical Science, was research associate at the Department of General Practice and Family Medicine, Philipps-University of Marburg for many years. She now works at the public health office in the district of Marburg-Biedenkopf, Hesse, Germany, and is also a lecturer for ‘special pain physiotherapy’.
Michaela Hach, manager of the Professional Association of Specialised Palliative Homecare in Hesse, Wiesbaden, Germany.
- Department of General Practice and Family Medicine, Philipps-University of Marburg.
- The ELSAH-study.
- Follow us at Twitter @uni_MR_GP
DOWNLOAD THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’ – OPEN ACCESS
This post relates to the longer article, How can we ensure the success of specialised palliative home-care? A qualitative study (ELSAH) identifying key issues from the perspective of patients, relatives and health professionals by Hannah Seipp, Jörg Haasenritter, Michaela Hach, Dorothée Becker, Lisa-R Ulrich, Dania Schütze, Jennifer Engler, Cathrin Michel, Stefan Bösner, Katrin Kuss, published in Palliative Medicine 2021 Volume 35 issue:10, page(s):1844 –55. Article first published online: 25 June 2021. Issue published: 1 December 2021. https://doi.org/10.1177/02692163211026516
- Read earlier Palliative Medicine ‘Editor’s Choice’ posts on the EAPC blog.
- Follow Palliative Medicine on Twitter @palliativemedj
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