The challenge of joint decision making with vulnerable people

On January 26th, the congress ‘Joint decision-making with vulnerable people: a challenge’ was held in Utrecht. During this congress, the central question was: ‘What is needed to take decisions about complex issues together with vulnerable people?’ When talking about vulnerable people, we can think of all sorts of people: the elderly, functionally illiterate people, migrants with a language deficiency, people with a mental and/ or physical disability, and people in mental health care. The problems these groups are affected by are often complex, and may relate to various domains (physical, social, functional and psychological) often at the same time. The audience of this well-attended event consisted of approximately 150 people. Presentations were provided by physicians, professors, client organization, researchers, and policy makers.

Joint decision-making entails that the care provider and the patient make decisions together regarding the care and health of the patient. The care provider is an expert in the medical and health field and knows what would help most people. The patient however, has his own preferences, knows his own body the best, and knows what works and does not work for him. Joint decision-making should be the starting point for every patient and care provider.

So where do we stand in the process of implementing joint decision-making with vulnerable people in the Netherlands? In recent years, much scientific research has been done on joint decision-making in healthcare (1,2,3,4). Tools, such as decision aids (keuzehulpen) and tools for assistance (handreiking), have been developed to support joint decision-making (5,6,7,8,9). Nevertheless, professionals and their clients, often still struggle in applying joint decision-making, which is not surprising, considering the difficulties in doing it well. Thus, a stronger focus on the practical implementation of joint decision-making with vulnerable people was considered very welcome by the presenters.

In the Netherlands, different projects are conducted in which joint decision-making is implemented in healthcare practice, particularly in vulnerable groups. These projects, for example, involve complex decision-making in vulnerable elderly people with multi-morbidity, patients with somatically insufficiently explained physical complaints (somatisch onvoldoende verklaarde lichamelijke klachten) in primary care, incurably ill children, or clients who (will) make use long-term care in the nursing and home care, disabled care, and/ or mental healthcare. The results of these observational and intervention studies on the implementation of joint decision-making concern the quality of the choice processes in one-to-one contacts with the client or patient, and the quality of the choice processes in the interprofessional Multi-Disciplinary Consultation (Multi Disciplinair Overleg). More specifically, these studies describe interventions for efficient and patient-oriented Multi-Disciplinary Consultations, training for joint decision-making regarding treatment- and care goals, Individual Care Plans (Individuele Zorgplannen), decision-aids, and evaluations aimed at the feasibility and acceptance of the developed methods and tools. It is expected that the study findings will provide insight into best practices, success and failure factors, and the most important challenges.

Another method that was presented to enhance joint decision-making is Advanced Care Planning (10,11). In Advanced Care Planning the aim is to make a plan that incorporates the wishes, goals and possibilities of (medical) care in the future. It entails that the involved parties regularly think and talk about the (medical) care that may be necessary in the future, considering the situations that may arise in the future. This is recorded in the client’s file/ care plan, while at the same time realizing that the medical situation of the client might change and requires changes to the plan. Regularly discussing and adapting a care plan focusing on the future, provides clarity for the client, the doctor, the counselling, as well as the legal representatives and other family members.

All in all, it was concluded that for achieving joint decision-making, good cooperation among professionals is required. An adaptation of the care process is also necessary and a good relationship with client representatives. In order to make the right decisions, it is extremely important to take the time to listen to each other’s arguments, especially when many multiple parties are involved.

Joint decision-making plays a crucial role in person-centered care, where the main focuspoint of the care provider is not the complaint or medical issue, but the patient presenting it. Person-centered care requires the exploration of someone’s personal motives and preferences, and connecting the medical context to a person’s social context. In light of person-centered care that takes diversity among patients into account, Panaxea in cooperation with Pharos, will conduct a research initiated by the National Health Care Institute (Zorginstituut Nederland) (12,13). The goal of the study is to provide input for quality improvement of care and to contribute to change processes aimed at the successful implementation of person-centered care by patients, care providers, care organizations, and other stakeholders in daily practice. The research uses various methods (literature research, focus group interviews, case studies) and input from various stakeholders. The research started in January 2018 and will last for 18 months.

By Anam Ahmed

The challenge of joint decision making with vulnerable people