Background
Due to improved living conditions, improved health care and more sophisticated medical treatment options, the number of older people in the developed world is rising quickly [
1]. Although the life expectancy of the population is increasing, the later years are usually spent in imperfect health. Therefore, multiple medical, social and financial issues arise regarding the elderly [
2,
3].
The concept of ageing-in-place, in which admittance to residential care is postponed as long as possible [
4], is an answer to both the financial issue and the profound wish of today’s elderly to remain independent and autonomous [
5]. One of the consequences of the ageing-in place concept in The Netherlands is that the elderly population is increasingly more scattered throughout the country instead of concentrated in several residential facilities. People with several comorbid complaints and functional disabilities (so-called complex patients) are now living at home instead of a residential facility. For general practitioners (GPs), this means an increase in the number of complex older patients they have.
Over the years, the issue of the increasing population of complex older patients in primarycare has become clear to both GPs and policymakers. Several attempts have been made to provide support for GPs. Interventions have been developed that focus on the management of complex care by structuring the approach to a disease or problem or providing support from other care disciplines [
6‐
9]. Also, attempts have been made to improve collaboration between GPs and other health care disciplines like elderly care physicians and geriatricians.
The elderly care physician is a medical specialism unique in the Netherlands. Up until now, most elderly care physicians have worked in residential settings and nursing homes. Since more and more complex older patients are living at home, collaboration between elderly care physicians and GPs seems appropriate.
Elderly care physicians could thus help GPs in the management of complex older patients. To provide support for the GP in their struggle with complex older patients, knowledge is necessary on what determines the complexity of an older patient from the GP point of view. Until now, the term ‘complex’ has been used as a mere addition of several psychological, social and medical problems [
10‐
13]. The lack of a clear definition of the term complex may have led to the current situation in which the interventions and collaboration between disciplines have not yet been optimally implemented [
14].
Although there are several support options for the GP, like the involvement of a practice nurse or referral to medical specialists, these are not always realistic or preferred options. It is unlikely that every form of support fits every case of complex elderly care. Currently, no studies are available into what characteristics make a case of an older patient complex. As part of a larger study on the possible collaboration between elderly care physicians and GPs, in this paper we describe an explorative qualitative study that was conducted to disentangle the concept of ‘the complex older patient’ from the GPs point of view.
Results
Patient characteristics
Patients identified by the GP as an ‘exemplifying complex older patient’ were usually females with a Western cultural background (N = 12), over 85 years of age (N = 10), with multimorbidity (>2 chronic conditions; N = 15), with a risk of falling (N = 7). Often, the GP questioned the cognitive function of the patient (N = 5) or cognitive dysfunction was already diagnosed (N = 4). Seven patients had a (suspected) psychiatric diagnosis, and two had a mental impairment.
Factors contributing to complexity
Analysis of the interviews resulted in twelve themes that could be categorised in five factors that contribute to the complexity of older patients (Table
3). These five factors (not being in charge, different views on necessary care, encountering the boundaries of medicine, limits to providing social care, ill equipped) are described below.
Table 3
Five factors that contribute to the complexity of cases with older patients
Not being “in charge” | No oversight on care delivered |
| Lack of an efficient registration system |
| Professional care is suboptimal |
Different views on necessary care | Patient declines treatment |
| Family members of the patient pressure the GP |
Encountering the boundaries of medicine | GPs doubt the benefits of treatment |
| Symptoms cannot be resolved. |
Limits to providing social care | No informal care system |
| Not enough time |
| Not enough information on available social support options |
Ill-equipped | Not enough knowledge on specific diseases |
| No professional support for GP [referral options, support of specialised nurses] |
Box 1
Exemplifying quotes from the interviews
1a. And when I make arrangements, well, I can write it down in the file for the home-carers, but then I encounter the problem of how to inform the physical therapist or the people of the day care centre, that kind of stuff |
1b. Yes, there are different shifts and 15 different people are involved with one lady. So then they must have a team meeting and they all must understand how to approach such a person. And that’s just…well, I can see it’s not working |
2a. Maybe she is becoming demented…she is suspicious… Well, may she? Yes, maybe an 88-year old woman is allowed to go through a slight character change…But well…It does go too far when she won’t accept visitors. But maybe I am seeing things too negatively |
2b. Somebody who does not want anything has that right, so then you are trapped…While simultaneously you feel pressure from the family, pointing out that he is not doing well. |
3. One and a half years ago, she went to see the cardiologist because of some valve problems, but no cause was found. Very frustrating […] You would think we have a cure. So I prescribe something, but she complains again. |
4. My weekly attendance prevents escalation. […]. Yes, actually, I am over there too often […]. Well, really, there should be nursing professionals with more experience with Parkinson patients. That would reduce my presence to only once a month [instead of once a week]. |
5a. I thought you should stay mobile, especially when you have Parkinson’s disease you should practice that. But that was just a thought I had and I have no idea if it is actually true |
5b. Can we make it possible for them to stay living in their own home (with M. Parkinson)? I don’t think the neurologist knows. I fear that a geriatrician also doesn’t know. |
Not being “in charge”
The complex older patient is often surrounded with a jumble of professional and informal carers. This can be confusing for the patient and GP. GPs highlighted the lack of an efficient registration system in which all involved health professionals can communicate about the patient (Box 1: 1a). Although the GP tries to coordinate care surrounding the complex older patient, the amount of independently operating carers leads to a feeling of not being in charge of the care delivered. At the same time, GPs feel that they are responsible for their patients. The feeling of being responsible whilst not “in charge” creates frustration and a feeling of inadequacy. This feeling is intensified when the quality of professional care is suboptimal in terms of education, staff turnover and available time (Box 1: 1b).
Different views on necessary care
Although GPs might have a clear idea of which intervention would be beneficial for their patients’ health, the view of the GP is not always the leading and conclusive one. For instance, some patients have psychosocially based problems (i.e. loneliness, isolation), while potential solutions for the problems (i.e. attending day care programmes) are rejected. Some older patients resist interventions, claiming they are too old or that taking pills or using assistive equipment is a hassle. When patients decline treatment, GPs often suspect the patient of having dementia, which complicates the matter even further (Box 2: 2a). The GP and patient can agree on no treatment, whilst family members of the patient pressure the GP to ‘do something’ (Box 2: 2b). When different views on what is best for the patient arise, the GP is torn between being responsible for providing adequate treatment, giving in to concerns of family members and wanting to respect the autonomy of the patient (Box 2: 2a).
Encountering the boundaries of medicine
Generally, patients visiting a general practice seek help for their health care needs and medical problems. Although sometimes ‘watchful waiting’ is the appropriate treatment, usually a treatment option is available when symptoms increase or health deteriorates. When taking charge of the health of a complex older patient, however, the GP is confronted with many cases in which they feel they cannot provide adequate treatment. For some treatments or diagnostic procedures, GPs doubt whether the benefits outweigh the burden for the already frail patient. They believe many symptoms in old age simply cannot be alleviated, which seemed to frustrate some of the GPs (Box 3). GPs stated that they often feel empty-handed because the patient is in obvious need of help while the GP cannot provide medical treatment for their symptoms.
Limits to providing social care
When older patients don’t have an informal support system, problems arise when patients are unable to travel or walk longer distances and GPs worry that important health problems are not reported. GPs question themselves to what extent they should be responsible for providing social care (Box 4). Many GPs have insufficient time for their complex older patients because their own full schedules don’t permit social visits to patients or a patient demands excessive time. GPs state that they suspect there are other professionals who can provide social support, but they lack accurate knowledge on the available psychosocial support in the area.
Ill-equipped
GPs stated they often feel they are not optimally prepared to care for complex older patients. They have insufficient knowledge on the treatment of specific diseases of old age, like Parkinson’s disease or challenging behaviour in dementia (Box 5: 5a). GPs state they find it difficult to get full insight into the whole situation and the possible interventions or support options for the patient and they feel like they are alone in trying to come to grips with complex older patients (Box 5: 5b).
Discussion
The aim of this study was to disentangle the concept of the complex older patient in general practice. Not being in charge, different views on necessary care, encountering the boundaries of medicine, limits to providing social care and feeling ill equipped all contribute to the complexity of such cases. The selection of cases also implies certain patient characteristics that add to complexity. Most cases were of patients in the age over 85 with multi-morbidity. Apparently, the combination of old age and multi-morbidity is a relevant factor for a case becoming complex.
The results show the reasoning of GPs as to why and when care for older patients is experienced as complex. The themes ‘not being in charge’, ‘limits to providing social care’ and ‘feeling ill-equipped’ point to a lack of oversight and structure in the health care system for patients with care needs and an unstable or failing support system. This lack of oversight is not only experienced by GPs, but also by patient themselves as research of Latafortune and colleagues point out [
18]. For GPs, this is frustrating for they feel pressured because they are responsible for their patients, but they don’t have control over the other care professionals involved. They lack insight into the competencies of these care professionals or don’t know who to consult for questions related to the more advanced stages of chronic diseases in old age. In these situations, taking the lead and coordinating care becomes too complex for the GP.
It is not surprising that most complex older patients are over 85 years of age, for these elderly are particularly at risk for having a no support system due to frailty or deaths of relatives and friends of their own age. This problem increases now that frail older persons are increasingly living in the community while relatives are living in other parts of the country. As other research pointed out earlier [
18], it seems prudent to develop a communication and information system for care issues involving such complex older patients as part of a solution to this problem. Smart-home technical devices that increase safety and help monitoring frail people might alleviate some of the pressure on GPs. Also these systems can help improve care by supporting people in managing their illness themselves [
19], which is one of the pillars of the Chronic Care Model. However, what is most needed is multidisciplinary expertise regarding advanced chronic disease and care dependency. Until now, this expertise is limited to the nursing home setting and in The Netherlands the elderly care physician is still rarely consulted by GPs.
In the themes, ‘different views on necessary care’ and ‘encountering the boundaries of medicine’, GPs express frustration about being unable to treat a patient or to intervene in a situation. The amount of cases with multi-morbidity that was discussed illustrates the difficulty GPs have in determining what is the ‘best’ treatment for a patient. Research tends to be done on single diseases, which makes it unclear how to treat a patient with multiple diseases at the same time. This often leads to conflicts in decision making when a GP tries to follow best practice guidelines. Next to this, it seems that frustration arises where GPs believe they reached the limits of medicine, wherein they see no medical treatment for the patients’ problem or a patient declines the medical treatment proposed. In the former case, what is experienced as a boundary of medicine might also be viewed as a need for a change in perspective, away from a disease- and problem-oriented approach in favour of a focus on the consequences of disease, thus requiring other medical expertise. The geriatrician Mary Tinetti stated [
20]: “concentrating on diagnosing the disease for which often little can be done can lead to ignoring or underplaying symptoms or disabilities for which often much can be done”. Regarding declining patients, GPs struggle with their own beliefs about appropriate treatment and how to respect the autonomy of the elderly. They believed that – in the end – the ‘right to say no’ must be respected provided that the patient does not suffer from decision making disability. Here, an approach to autonomy from the perspective of geriatric ethics might offer alternative strategies. For example, Agich [
21] argues that autonomy and dependency are inextricably bound to each other, especially in old age. Following this view, respecting autonomy can also mean providing a person with enough support to maintain a feeling of integrity in that person’s most valued areas of life [
21]. This may mean that, paradoxically, a physician sometimes needs to persuade a seemingly unwilling patient to undergo a treatment or intervention that ultimately leads to finding a new sense of autonomy.
Even with this approach to autonomy, GP’s have to weigh which value is most important in every individual case; the right to decline treatment or the right to receive treatment that could possibly enhance the patient’s autonomy. This is a complicated moral decision, especially in situations where family is involved in the decision making. To optimise such a decision, GP’s might benefit from consultations with an elderly care physician or an old age psychologist.
Limitations
There are some limitations to this research. First, the sample of GPs was purposely selected to represent the variety in the population of patients, but there seems to be an underrepresentation of male, immigrant or foreign patients. It is, therefore, questionable whether all possible variations of the topic were explored. Also, GPs chose the cases they wanted to discuss. This may have resulted in cases that were rather extreme and do not represent the full spectrum of complex older patients.
Second, this study took place in the Netherlands and the patients and GPs represent the Dutch situation. Although there are other European care systems like the Dutch system, generalizebility to other countries questionable.
Third, the interviewing researcher is an elderly care physician herself. This might have introduced bias as the interviewer herself had ample experience with complex older patients and may therefore elicited certain specific responses from the GPs. However, the data was analysed by both psychologists, elderly care physicians and GPs, which should have eliminated this bias.
Conclusion
Despite the limitations, this study was able to disentangle the umbrella term of the ‘complex older patient’. The results imply that structuring the organisation of care and consulting elderly care physicians or geriatricians could support GPs in providing care for the continuously growing group of older complex patients. The results also imply that developing one care model for all complex older patients is an illusion. Improvements in care for this population should focus on tailored care and formulating an individual care goal rather than creating a ‘one size fits all’ solution [
22].
Whether all GPs recognise these problems is an important question for quantitative follow up research. Future research could also focus on developing and testing a toolkit that tackles the issues that were derived from this research.
The study was well prepared in consulting several experts before finalising the topic list and the several steps of the analysis process. Finally, the involvement of a GP, an elderly care physician, and psychologists ensure careful interpretation of the data and reliability of the results.
Funding
This research was supported by a grant from the SBOH (the employer for GP trainees and elderly care medicine trainees), the Netherlands.