Background Home Marjorie in Belgium is a specialised home for HD-patients in all stages of the disease.
The approach in Home Marjorie focuses on maximising the control people with HD have over their own lives, on providing individualised care throughout the disease, and this within circumstances as close to normal life as possible. An important tool in accomplishing these goals is advance care planning.
Aims Advance care Planning is a process of reflection on future treatment choices and treatment goals. The goal is to avoid essential decisions about the health of the patient being taken outside of his will and knowledge. The participation of the resident in such decisions should be maximal. The result of this process should be negotiated care and treatment directives.
Method The model for ACP in Home Marjorie is:
Goal-based: determine the treatment goals the resident wants to achieve in this and later stages of the disease and then the appropriate treatments can be determined from that by the medical team
Relationship-centred: significant others are included in the process agreement model: distinct from a one- time “contract model”, this requires a process of regular conversations in an open climate
To facilitate talks with Huntington patients about this abstract subject, pictogram’s are used depicting activities of daily living, e.g. eating, walking, talking, The question is asked what the patient feels is most important and how their quality of life would be affected by impairment in these activities and what could help them still reach contentment.
Results These talks provide clear directives for the medical team for managing medical issues now and at the end of life. This model also leaves room for changes of mind during the evolution of the disease. Equally important, is that the multidisciplinary team and family members receive a clear picture of what signifies quality of life for this individual patient and can incorporate this in their approach.
Conclusion Using this method, we hope to increase feelings of control and well-being for the patient and his significant others. Since we have been using this method, we have definitely become convinced that this is the case. This has also improved feelings of well-being in the staff, since we feel comfortable in letting the patient guide us in his care.
- advance care planning
- quality of life