Disentangling the concept of “the complex older patient” in general practice: a qualitative study

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.