For the first time in Germany, a new study evaluates the concept of "advance care planning", a regional approach that helps individuals to develop, articulate and document wishes regarding the limits of medical treatment in future medical situations when they are no longer able to make decisions themselves.
Would I want to be resuscitated in the event of acute organ failure? Would I wish to be kept alive in an intensive-care unit in the case of severe brain damage? For patients who are suffering from life-threatening diseases, issues like these are of crucial importance. However, in such a situation, the patient's wishes are rarely known. Despite legal regulation, advanced directives are not widely used in Germany and, even when such a "living will" is available it is often not relevant and not honored by the medical personnel. "So far, the whole spectrum of available life-sustaining treatment is automatically started when an old and severely ill patient is admitted to a hospital. The traditional advanced directive currently used in Germany has failed," says Professor Georg Marckmann, Chairman of the Institute for the Ethics, History and Theory of Medicine at LMU.
A lifelong process
But there is an alternative to the present unsatisfactory situation: In collaboration with a team of colleagues led by local general practitioner Jürgen in der Schmitten of the University of Düsseldorf, Marckmann has adapted the American concept of advance care planning to the German context and implemented it in a pilot project in the State of North Rhine-Westphalia. "The concept represents a paradigm shift, because it views advance care planning as a lifelong communicative process, which is supported by specially trained health professionals ("facilitators"), and results in the formulation of a detailed, individual plan for future medical situations," says Marckmann. In contrast, the conventional approach to advance directives has left their formulation entirely to the respective individual.
For the pilot project, the researchers developed a program entitled "beizeiten begleiten", which was implemented in three nursing homes in North Rhine-Westphalia, and its impact was studied over a period of 16 months. Caregivers at the three institutions were trained to initiate advance care planning conversations with the nursing home residents. In addition, the residents' general practitioners received information on the topic, and seminars were arranged for the nursing staff, clinical and emergency doctors, paramedical teams and professional guardians. The researchers also developed standardized forms for advanced directives, as well as a form for documentation of physician orders for life-sustaining treatment (POLST), which gives directives to doctors, first-aid personnel and nursing staff for the case of a life-threatening emergency.
More and better directives
"Using this integrated approach, we were able to increase the number of directives and, even more importantly, we achieved a significant improvement in their quality, i.e. their clarity and relevance," Marckmann reports. At the end of the 16-month study, over 50% of the residents of the three nursing homes had completed an advanced health-care directive. Of these declarations, nearly 94% had been signed by a physician and almost all of them designated a health-care proxy. Likewise 98% contained instructions as to how medical personnel should proceed in administering emergency care, and 95% contained specific directions regarding cardio-pulmonary resuscitation. These numbers were significantly higher compared to a control region in which the advance care program had not been implemented.
The feedback received by the researchers from both nursing-home residents and their caregivers was also very positive. "The participants were pleased that someone had finally taken the time to talk to them about the topic of death and terminal care," says Marckmann. And in personal conversations with the aged, the facilitators were able to correct many misconceptions – e.g. regarding the success rates of resuscitation attempts (which are generally low for nursing-home residents).
Dying with dignity
"Advance care planning programs make it possible to systematically ascertain the wishes of elderly and chronically ill people regarding future medical situations, and ensure that these wishes will be honored in emergency situations," says Marckmann. "Instead of engaging in debates about organized physician assisted suicide, we should rather be thinking about how we can widely implement advance care planning on a regional basis. After all, the goal of advance care planning is to enable people to die with dignity, as they would wish their lives to end."
The researchers' next goal is to make the concept of advance care planning an integral part of regular medical care. "Our study shows for the first time that a regional advance care planning program can be successfully implemented in Germany, and it demonstrates how effective such a program can be," Marckmann says. In the area around the city of La Crosse in Wisconsin in the American Midwest, for example, which served as the model for the pilot project, assistance with advance care planning is offered to all elderly in the course of their routine medical check-ups.