I Stakeholders involved in geriatric palliative care
In order to find out which stakeholders are important within the context of palliative care for older patients, the interviewees were asked to list all those people, professions, institutions and facilities that spontaneously crossed their mind. The following items were mentioned by all the interview groups: family members, volunteers, nurses and general practitioners. Except for the group of palliative care physicians, all other groups also named the term "physicians" in general. However, the terms palliative care physician, palliative care nurses, and palliative care teams were only named twice and the term geriatrician only once.
Roles of different medical disciplines
The discussion of the roles of the different medical disciplines within the context of palliative care for older people was very intense and controversial.
Opinions of general practitioners
The general practitioners said that family doctors as well as palliative care physicians and geriatricians argued for a holistic approach to patient care. However, the general practitioners stated that they were the central contact person for the patients and therefore had the most comprehensive approach whereas specialists were only partially involved.
"Family medicine is at the top. Geriatrics and palliative medicine are parts of our work. (...) there may be times that you will consult with experts in this field. But we ourselves must serve as the basis of the care." (Ha1-3)
On the other hand general practitioners saw an imminent decoupling of palliative medicine from general medicine. They found the reason for this in the increasing specialization which was strongly introduced for the profession of anaesthesiology in Germany and which they judge to be rather harmful. To undermine their central role in palliative care, general practitioners claimed that they have always provided palliative medicine. It was just not labelled as palliative medicine:
"Family medicine has actually always been palliative medicine. We just haven't defined it as this (...) For our older colleagues the term palliative medicine just doesn't do anything for them. (...) They say that we have always done this. What do you need with this new-fangled stuff?" (Ha1-3)
Furthermore, general practitioners estimate themselves to have the best qualifications in the broad field of palliative care for older people as they had an extensive relationship with their patients as well as with their social environment and, therefore, had a detailed knowledge of their biography. In contrast geriatricians and palliative care physicians were involved with older patients in special cases and settings only; therefore they overviewed fragments of older patient care only.
As another argument in favour of general practitioners, cost-efficiency was pointed out: "And I also think that the way in which palliative medicine functions is somewhat different from the way family medicine works; because general practitioners have learned in our health care system to achieve a lot with as little expenditure as possible; as cost-efficiently as possible, because it is good to work under an economic aspect." (Ha1-2)
Opinions of geriatricians
The geriatricians saw the main difference between themselves and general practitioners in regard to the health care structures and standards in Germany. Presently, in the outpatient sector in Germany, there barely exists specialist geriatric medicine whereas in the inpatient area, there is a high degree of structures and standards available in geriatrics. The geriatricians critically assessed the skills of the general practitioners in the area of palliative medicine: "There is, I believe, certainly a whole host of general practitioners who are very comprehensive (...) in supplying palliative care. However, some completely ignore it because they feel overwhelmed by the issue." (Ga1-3)
On the other hand, the geriatricians positively evaluated the skills and capabilities of palliative care physicians: "Especially when it comes to pain therapy, the palliative care physicians perform very sophisticated medicine, e.g. nerve blockages and such things. We need these specialists, because we of course don't do these things (...) because we lack the know-how." (Ga1-3)
Opinions of palliative care physicians
The palliative care physicians saw similarities among the three medical disciplines that were involved in the study regarding the fact that all offer ....concomitant and integral medicine. More than many other disciplines, the three groups would have an insight into the psyche and the social environment of the patient. This approach would mean that professionals from palliative medicine, geriatrics and family medicine were generalists.
The palliative care physicians clearly delineated their field of activity from that of the general practitioners. The latter take care of a much larger variety of patients and usually are the first to, e.g., discover a cancer of a palliative patient:
"Palliative medicine is a small area. That is clear. Straightforward and manageable. And family medicine (...) patients, children, grandparents and siblings, that is quite comprehensive. And probably also the patient from the beginning of the illness. The general practitioner himself would probably diagnose cancer disease." (Pa1-2)
Consequently, compared to the general practitioners the palliative care physicians get involved in the care of older palliative patients relatively late, they get to know the patients only for a short time and also participate in the process at a point when the patient has usually already faced the disease for a long time.
Opinions of the general nurses and palliative care nurses
The general nurses consider the family doctors to be the primary caregivers for geriatric palliative patients: "It all really starts with the family doctors. He's the one who's there at the beginning." (Pf1-3)
Having this in mind, the nurses are critical of the fact that not all general practitioners are well trained and possess the special expertise. This would only come about now with new training programs for young physicians.
The palliative care nurses shared the opinion that general practitioners would also need palliative medicine and geriatric expertise because the family doctor's office would be the first point of contact for the patient. It was considered as being critical that in Germany the geriatricians are almost not available in the outpatient sector.
Knowledge, skills and expertise
In all focus groups, specialist expertise in pain therapy and symptom control was considered as a key precondition for good care for older incurably ill patients. The importance of multidisciplinarity and cooperation was highlighted multiple times: "...you need, so to speak, high specialist expertise that cannot be achieved by each individual himself, but which somehow must be guaranteed to be available on the team." (Ga1-3)
Besides the medical aspects, the importance of social expertise was emphasized, containing characteristics like empathy, respect, tolerance, healthy common sense and the ability to listen and to have patience. In this context, the significance of the biography of the patient was also stressed: "And it is therefore helpful that one knows the family and the pre-history. The hobbies, the passions. Whether someone is religious or not." (Ha1-2)
"Again, this is the biography. This is often how one has lived one's life. And the whole pre-history of the life, how one circumvents the end of life." (Pc2-1)
The talents to organize and improvise are also considered to be important skills in palliative care for older patients. The general practitioners mentioned the ability to make decisions and the need of courage to deviate from universal standards in certain situations. The palliative care physicians reaffirmed this commitment to flout standard rules. As an example, the allowance for alcohol and tobacco consumption among geriatric palliative care patients was named.
II Target groups
Differences between older and younger palliative care patients
All the interviewed groups saw the multi-morbidity and the often resulting poly-pharmacotherapy as a major difference in the care of older palliative care patients in comparison to younger palliative care patients. It was stressed that the effects of drugs on the elderly are poorly studied and that there is a great risk of unforeseeable interactions and side effects. In addition, cognitive deficits among the elderly often lead to reduced compliance. The subject of the treatment choice and limitation was also discussed. It concerned the geriatricians "that it was perhaps easier to achieve consensus with the families and overall on an interdisciplinary basis when it concerned old people where perhaps everyone understands that now a treatment limitation is necessary. And with a young person it is the case where one always hopes that maybe something can still be done." (Ga1-1)
General practitioners stated another difference between older and younger palliative care patients in their attitudes towards life, illness and death: "So, the old man who has finished with his life in general. And the proximity to death doesn't scare him very much in general (...), and for the young, I still naturally have other conflicts and also fear and concerns to work through here. And because there is a structure, because for the young I most likely also need more psychological expertise on the team." (Ha1-3)
Among the palliative care physicians' gender-specific issues in regard to treatment desire were mentioned:"We have to deal with women who have long spent their whole life being responsible for others, and still continuing to look after others, then maybe it is worthwhile to look critically at whether women simply do not want to just sit back. And whether or not they just do not want to be enabled any longer." (Pa1-1)
The nurses and geriatricians found that woman in comparison to men often worry about other people and take care of the problems of others. This would mean that older female palliative care patients are more restrained, endure more pain and demand less pain medication. They built their lives on others and thought less about their own suffering and more about the concerns of relatives. In contrast, male older palliative care patients would be more able to complain and think more about their own suffering than a female patient in a comparable situation.
III Inhibiting factors for the realization of geriatric palliative care
Two main aspects for inhibiting and supporting factors for the realization of geriatric palliative care were worked out: on one side, the framework of the German health care system and on the other hand, closely connected, the strong bureaucracy.
Insufficient financial resources in the health care system were seen as the main barrier to the implementation of good palliative care for older people: "There must be more money in the system. Or the distribution of money must be worked out." (Ha1-1)
The palliative care nurses complained about the separation of statutory health insurance and long term care insurance in Germany, resulting in sometimes unclear responsibilities and long-winded processes: „So the cooperation between the different costs units sometimes does not function at all.‟ (Pc3-1)
According to their own statements, the participants did not primarily desire higher salaries for themselves with their demands for more money; however, they wanted to improve medical care and work conditions. So, the general nurses proposed an increase in the key staff. In addition, they were – like the family practitioners themselves – of the opinion that the general practitioners' budgets were too strictly limited.
With the legal claim to specialist outpatient palliative care established with the most recent German health care reform in 2007, improvement concerning palliative care for older people was expected. However, critical statements were also apparent concerning the distribution of financial resources. Consequently, the geriatricians expressed the concern that some stakeholders want to tap new revenue sources without being able to offer adequate palliative care: "...does the money always flow to where the really good palliative medicine is supplied?" (Ga1-3)
"And here one has apparently discovered that one can open up new means of income. Whether it is really the primary motivation to establish or to improve the palliative medical care?" (Ga1-3)
In this context, the general practitioners saw the development of new specialized structures as being critical: "Because palliative medicine is predominantly a family practitioner' task, why is there now suddenly basically additional specialist care ... or even specialists active in this field? I find this really strange." (Ha2-3)
"Palliative care units? I am still critical." (Ha1-3)
Bureaucracy
Bureaucracy was seen as fundamentally necessary as it is a component of quality assurance. However, all interview groups complained about excessive bureaucracy which costs a lot of time that otherwise could be invested in a better way.
"So you always have to write down what you have done, why you have done it. Thus, so that the colleague who is there at night knows what is actually going on. This is not the problem. For me the problem is the applications and forms of the insurance carrier. Where the cost absorption claims were placed, which can then be rejected, the objections were made, where the invoices were questioned, where you will spend hours of your work time." (Ga1-3)
IV Improvement of palliative care for older people
The focus group participants made a lot of suggestions to improve palliative care for older patients. Increased input of resources, especially more money and more staff was seen as being particularly effective.
In addition, there was a critical discussion on the implementation of nursing home physicians which are not established in Germany. This idea was introduced into the discussions (Group 6) as it has become a major subject of the political discussions in Germany and with the recent nursing care insurance reform in 2008, legal conditions for nursing homes to employ physicians were introduced.
More money, time, and communication
The approaches to improve palliative care for older people focused on the aspects of "more communication", "more time" and "more money", taking into account that these aspects are closely linked: If there was more money for palliative care, the health care professionals could have higher key staff and would consequently have more time to communicate with patients and families as well as with other professionals. Overall, that could lead to an improvement in patient-centred care. The claim for more money and the resulting increase of medical staff and hence the benefit of more time for communication was found in all focus groups, e.g.:
"But communication always requires (...) a common space, a common time, a common language and a common attitude to one another. (...) Space and time are just (...) not there, because we do not have the possibilities financially, the resources to do that." (Ga1-2)
"But we don't have the resources for real conversations (...) We have only one nurse for 40, 60 patients, how should we have time for real conversations then?" (Pf1-4).
The participants agreed that the reason for the lack of money and the inadequate distribution of resources was found within health politics. Consequently, the participants demanded a new type of compensation rate for patient consultations and also for discussions with colleagues. In addition, treatment by occupational therapists and other professionals should be better rewarded.
Regarding bureaucratic work, the delegation of non-physicians' and non-nurses' work to other professionals (e.g. documentation assistants) should be intensified and technological systems, e.g. a paperless hospital, made more use of: "(...) we have documentation assistants for this, or the technology solves the problem for us." (Ga1-2)
Nursing home physicians
The participants of the group discussion had various opinions concerning the question if nursing home physicians should be regularly introduced in Germany. One geriatrician criticized that some general practitioners would not invest enough time for their patients living in nursing homes, a nursing home physician could have a much closer commitment to the nursing home and its residents.
"As for such a nursing home physician I find that the argument is also appropriate here that there are general practitioner colleagues who actually just rush through, and don't care for the patients intensively (...) Particularly with the dementia patients, because they just don't get involved. And such general practitioners are then perhaps inferior to someone there who perhaps supports this institution with a certain commitment and actually also can assess the caregivers and can also actually cooperate well with these." (Ga1-1)
According to the family doctors' opinion, another advantage is that the nursing home physician-model may improve team building with the nurses.
Also from the perspective of the nurses, a nursing home physician could be useful due to his good accessibility and because they don't have to deal with many different general practitioners: "Every nurse wants to have a physician in the home because it would also be easier because of the logistics. So that's what the nursing staff wants. With orders and prescriptions and perhaps weekly office hours one could have a regular contact person." (Pf1-3)
The answer of the palliative care physicians on the question which medical specialty would be most suitable to act as nursing home physician was that it should be either a family doctor or a geriatrician because of their experiences with elderly people:
"(...) either a family doctor or a geriatrician. Because I think that they have the most experience with elderly people. And their problems." (Pa1-1)
However, the "nursing home physician-model" was controversially discussed in principle. A general practitioner spontaneously insisted that it is contrary to the right to free choice of a doctor; she also pointed out that one problem would be that the personality of one particular nursing home physician does not always suit each patient:
"And I know that there are many completely different types of doctors and many different types of patients. A nursing home physician cannot make all patients happy. That is just natural. It starts with gender, whether it is a man or woman." (Ha2-3)
Likewise, it was seen as being negative that a doctor only working in a nursing home has not already been caring for the patient for years before his admission to the nursing home. Therefore, a nursing home physician would not be a part of the patient's social environment and would not know the patient's life story within the context of treatment. Patients could find it difficult to get accustomed to a new doctor as the main contact person:
"But it is detrimental (...) the last thing that connects the elderly patient to his home is the general practitioner. Sometimes it's a piece of furniture. And at the height of dementia, the general practitioner who has for years been beside him in healthy and in sick times is the one who can quiet him and influence him." (Ha1-3)