Organizational level
death, terminally ill, Parkinson's disease or whatever., amyotrophical lateral sclerosis, multiple sclerosis
SAID, MULTIPLE SCLEROSIS
Clinical staff in particular expressed a genuine sense of apprehension for the integration of both concepts. This cooperative project was considered a revolutionary, pioneering, and innovative establishment in the palliative-hospice setting following the English model where hospices provide palliative and end-of-life care, thus overcoming the different sectors by integrating all levels of medical, therapeutical, and spiritual care. Concurrently, provided appropriate concepts are available, it might open the doors for people other than oncological patients typically treated in palliative care.Well, in my opinion, the greatest opportunity is the fact that we could include groups of patients into our care, if we wanted to - of course, an appropriate concept would have to be developed for this - which we do not care for in a prototypical hospice. I am thinking primarily of severely affected neurological patients such as patients with amyotrophical lateral sclerosis or multiple sclerosis or Parkinson's disease or whatever. (clinical staff, 03)Both clinical staff but more volunteers expected an expansion and intensification of competencies and services. This included more volunteer work and co-therapies, more opportunities for patients and family caregivers to mingle as well as individual end-of-life care.I even believe that it feels very good for relatives to get in touch with one another. I think that's a good way to start a conversation and start mourning, simply put - you're not alone. (volunteer, 09)Especially clinical staff spoke of a great opportunity to relieve existing resources as there are not enough hospices in the area and to further the current use of research methods. They also felt that the development and implementation of teaching practices that advance students’ knowledge and prepare them for working with terminally ill people was essential. Both teaching and research were mentioned in all three blocks with clinical staff, in particular, being worried that resources and money will only be invested in research and patients’ needs to converse might be exploited for research purposes.In addition, they emphasized the strengthening of synergies as an outstanding opportunity, general criterion but also challenge. The close cooperation with the Department of Palliative Medicine, including its sub-units, and other departments is desired.… and certainly that there is no negative competition between the different departments of the university clinic but that the expertise and scientific knowledge of every department will be accessible to hospice residents. (volunteer, 15)Herein, the integration with the university clinic as a large organization was discussed heavily. On the one hand, this would allow for faster access to medical doctors as well as less bureaucracy and paperwork. On the other hand, this would mean less decision-making and flexibility for employees and too much medical/palliative care. It was stressed that a hospice has different legal and monetary requirements whereas the university clinic as large, powerful organization must bring profit and provide the maximum level of curative medical care.Then, of course, financing must be completely separate. On the one hand, we are part of a hospital and must generate a profit. On the other hand, an inpatient hospice is not allowed to make a profit but depends on donations. (clinical staff, 06)Although there was a general consensus for a cooperative concept integrating a hospice into a university clinic, it was feared that current existing structures would be neglected in favor of the university hospice. Both groups hoped that the new inpatient university hospice would result in equal access to medical and therapeutical care without budgeting limits. Similarly, they hoped for equitable access for everyone, specifically for people who usually get lost in the health system.… but I think it's important to give people access- access to people who don't have access to palliative care yet. (clinical staff, 01)Both groups wished for and considered it an urgent requirement to publicize and normalize death within society, which is an important aspect in the current pandemic, and suggested using this concept as stigma-change intervention for reduction of negative attitudes associated with a hospice.I think these topics [grief, death, and dying] will become more present at university but also in society, this project might raise people’s interest in these topics, reducing their fear of death, while decreasing the taboo element of death. (clinical staff, 11)Clinical staff felt that freshly prepared food adapted to the individual by a professional cook was essential as this is often one of the patients’ last wishes and only highlight left.And for many patients who can still eat, that is the only highlight left, a delicious dish. And I would find it nice (…), that there is someone permanently employed, a cook, who perhaps cannot respond to every wish, but can respond to wishes and can prepare a delicious meal (…) because as I said, that is the last true feeling of joy for many. (volunteer, 09)Alternatively, it should be allowed for relatives to cook and dine together as this relates to a better quality of life.They also criticized the bureaucratic cumbersome nature and disproportionately long decision-making processes within a university hospital. The project has to be bound by collective agreements and comply with legal requirements taking into account the responsibilities of the authorities. Another important aspect related to the budget plan. This included cost coverage, funds being cut or frozen, financial restrictions on the length of stay, profitability, and different financing for both institutions.(…) only the financial aspect, that patients do not care for. That the palliative care ward is financed by the health insurance and the hospice is financed by the health insurance and long-term care insurance, that of course, is of very little interest, very little. (clinical staff, 13)Concurrently, clinical staff expected sufficient budgeting to fulfill patients’ last wishes and for sustainable staff management. A few employees also mentioned the possible rejection of the hospice movement as general hurdle.Another fear is, on the other side, what I have just mentioned, that the hospice movement is like "For God's sake, now the university medicine also wants to take possession of the hospice movement” and might therefore reject it completely without thinking about it any further. (clinical staff, 06)Last, especially clinical staff stressed the importance of developing a solid, innovative, and progressive concept. The difference between a palliative care unit, a regular and a university hospice must be defined and clear structures should prevail. This should be determined before the localities and architecture are set and with the involvement of all employees. In that regard, clinical staff, in particular, hoped for an autonomous, independent hospice. They expected it to be a separate sub-unit of the palliative care center. Similarly, the hospice character had to be ensured, both conceptually and structurally. The focus must be on care and supportive therapies with a calm, peaceful atmosphere.I'm a bit afraid that it will be too medical and not cozy enough, which usually characterizes a hospice, more peace and quiet, little hustle and bustle, that it's just like home. (clinical staff, 07)Structurally, the most important aspect mentioned was the spatial design, i.e., the optimal architecture. They hoped for single, spacious rooms with a window and access to a garden, overnight accommodations for relatives, recreation rooms, a farewell room or "room of silence” and lounges to connect with one another. The predominant focus was a protected garden with barrier-free access. However, they were well aware, that this warranted major challenges and hurdles.