The participating patient
The introduction of regulated market forces in patient care in 2006 was intended (among other things) to effect a shift from supply-driven to demand-driven care, whereby the provision of care would be based not on the existing supply but on the demand and needs of patients. In essence, this transition would enable (though not oblige) patients to participate in the decisions about and implementation of their care. Though some of the developments to come out of this have been positive, it is clear that now, more than six years on, patients still have insufficient opportunity to participate in care, despite the fact they are eager to do so.
This is a problem for individual patients because it means they cannot be sure of receiving the care and treatment appropriate to their personal situation and preferences. But it is also a wider social problem, because it only exacerbates the inefficiency of care. Already limited, the resources available for care (money, labour) only stand to come under greater pressure in the years ahead. Using these resources effectively is therefore crucial. But to do that, patients and care providers alike will have to commit – where possible – to setting explicitly formulated health goals and to taking active steps to achieve them. And that, in turn, means patients will have to be enabled to take part in their treatment: patients must be able to exercise ownership over their own care and treatment plans.
Achieving this requires a partnership between patients and their care providers, in which patients can and do make their wishes and preferences known and care providers use this information to help them make appropriate choices regarding diagnosis and treatment. In other words, ideally patient and care provider take a joint decision about the individual care to be provided (= joint decision-making) and the patient is actively involved in the administration of that care (= self-management/ shared implementation).
The joint decision-making process progresses through several phases. It starts with an exchange of information, including about the fact that there are different options available (‘choice talk’). Next, the options and their various pros and cons are explained and weighed up (‘option talk’). In the final phase, the patient is prompted to consider his or her own preferences, eventually resulting in a decision about the treatment regimen (‘decision talk’). Decision aids can be used along the way to support this process, which include a description of stages in the care process at which choices need to be made, information about options – including the option to forego treatment – and information about the prognosis over the short, medium and long term.
The treatment itself is also a joint arrangement, though one with different responsibilities on each side. The doctor and the patient draw up a treatment plan together and determine which decisions the patient can take alone and which actions he or she can perform independently. The doctor then specifies the parameters within which these actions should be carried out and gives the patient clear instructions. Together, they make agreements regarding feedback and supervision and record these in writing, preferably in an ‘Individual Care Plan’ (Zorgplan).
At the very least, all patients with a chronic condition and/or multimorbidity should have an Individual Care Plan; for patients who have a chronic illness and are also vulnerable in other areas of life, having such a ‘full picture’ is absolutely essential. Particularly in the case of patients affected by multiple simultaneous conditions, the Individual Care Plan could signal any overlaps or discrepancies in care. Furthermore, such patients must have a single chief care provider who is responsible for the joint decision-making process and for the coordination of the diverse treatment goals.
Together, the patient and doctor evaluate how the process of joint decision-making unfolded and what outcomes it achieved in terms of health benefits and patient satisfaction. In situations of chronic care, such evaluations should take place periodically and in any case once a year. And, if necessary, the doctor and patient can agree to adapt the treatment plan.
Naturally this comes with a caveat: joint-decision making and shared implementation is not always possible, and some patients may even have an explicit preference to leave all decision-making to their care provider. These options should remain open; after all, joint-decision making must not become a new dogma.
Nonetheless, on the whole, patient participation in treatment falls short of what it could be and falls short of what patients themselves wish. The professional associations of general practitioners and medical specialists have also raised this concern, underlining the importance of joint decision-making.
So why has it proved so difficult to get patient participation off the ground? Much of it has to do with the doctor-patient relationship, which is unequal by nature. Not only are patients in a vulnerable position, there is also the problem of information asymmetry. Patients have access to such a vast amount of general health information that it is difficult for them to navigate their way through it and to assess how reliable that information is. Conversely, specific, tailored health information is less accessible, as too many guidelines for professional practice have yet to be translated into patient versions and gaining access to one’s medical file is often problematic. As well, the medical model that dominated for so many years, characterised by paternalism and unilaterality, is still deeply entrenched and continues to colour the mutual expectations of patients and care providers to this day. This dominance is also manifested in the basic organisation of care – especially second-line care – around organ-based medicine. Growing medical knowledge and capabilities have led to a kaleidoscope of subspecialisations, resulting in the fragmentation and compartmentalisation of care. Added to this are the ambiguities surrounding the legal consequences of joint decision-making and shared implementation on care provider and patient liability. Last but not least, the financing of care is also an obstacle; after all, action pays, talk does not.
Which steps are needed to open the way for joint decision-making and self-management across the broad spectrum of healthcare practice? The main recommendations of the RVZ are:
- Improve the reliability of general health information;
- Improve access to specific – i.e. patient-tailored – health information;
- Incorporate the decision timeline and discussion of different options and their pros and cons into the guidelines for clinical practice and translate these into patient versions;
- Develop and implement decision aids;
- Uphold patients’ right to demand an Individual Care Plan;
- Reward the effort that care providers make to involve patients in decision-making.