Advance Care Planning in German nursing homes – on target for nationwide implementation?

Georg Marckmann, Institute for Ethics, History, and Theory of Medicine, Ludwig-Maximilians-University Munich; Jürgen in der Schmitten, Institute for General Practice, Heinrich-Heine University of Düsseldorf, Germany.

Left to right: Prof Georg Markmann and Dr Jürgen in der Schmitten

Left to right: Prof Georg Markmann and  Dr Jürgen in der Schmitten

Germany may become one of the first countries in Europe to implement advance care planning on a national scale. In November, the Federal Ministry of Health issued a benchmark paper on strengthening hospice and palliative care in Germany that includes a commitment to establish Advance Care Planning (ACP) services in nursing (long-term care) homes.

The institutions will receive additional funding from the German sickness funds (health insurance) if they offer their residents ACP, i.e. individualised professional guidance and information to enable people to make future healthcare decisions, including the use of emergency, palliative and psychosocial care in health crises. The nursing homes can offer ACP themselves or cooperate with other regional care providers (e.g. hospice and palliative care); a general practitioner or palliative care physician should be included in the planning process. Cooperation of regional healthcare institutions and professionals should ensure that the resulting plans are available and honoured when needed. Establishing ACP in nursing homes is part of a broader initiative of the Federal Ministry of Health to improve the care for seriously ill patients approaching the end of life. It was developed in close coordination with leading health politicians of both major parties and will be the basis for corresponding legal regulations next year.

A case study from the ACP programme ‘beizeiten begleiten’ – Lilly may die in peace from her acute stroke
Lilly, a patient of one of the authors (JidS), is an 84-year-old lady, handicapped by polyarthrosis, but fairly mobile on her walker, and as clear and cheerful in her brain as ever. When she is admitted to a nursing home because climbing the stairs to her flat and other routine activities have become too awkward for her, she is, like all new residents, offered ACP by one of the nursing home’s social workers who is a trained facilitator. Together with her son and daughter, they sit together twice for 1.5 hours in total, allowing Lilly to reflect on her values and priorities, learn about possible future medical crises and their potential outcomes, and develop her personal treatment preferences for such instances. These are discussed with her family, and documented in an advance care plan that is signed by all including her family physician. One year later, following the facilitator’s recommendation, Lilly goes through an ACP conversation again, mostly endorsing and partly refining her earlier statements. 

Another year later, Lilly suffers a severe stroke that renders her virtually unconscious, hemiplegic, completely aphasic, and unable to swallow. Without ACP, residents with such a condition are inevitably transferred to hospital, and treated with intravenous fluids so as to survive their stroke – with the uncertainty of good recovery on the one hand or cognitive extinction and total nursing dependency on the other. Lilly, however, has made a different decision. She has clearly expressed in her advance care plan that if she suffered a severe stroke, she would prefer palliative care at home to any life-sustaining treatment, including fluids. Thus, she may now stay in the nursing home according to her wishes, where she receives no parenteral fluids, but appropriate mouth care to relieve a possible perception of thirst, and where she is tenderly cared for by the nurses she has grown familiar with, and her loving family that comes together for this purpose, and peacefully passes away 10 days later.

From 2008-2011, the Federal Ministry for Research and Education sponsored the first prospective inter-regionally controlled study of an ACP programme implementation. Modelled on the US programme ’Respecting Choices‘ and adapted to the specific circumstances in Germany, the ACP intervention, “beizeiten begleiten”, was implemented in one town’s nursing homes and the regional care system. The results, published early this year in Dtsch. Arztebl. Int., showed a much higher increase in meaningful advance directives in the intervention nursing homes compared to control. Having a scientific empirical basis that ACP can be successfully implemented in the context of the German healthcare system was a considerable factor in gaining the support of German politicians for implementing ACP into the healthcare system.

A chance to get involved
In September, the 5th International Conference on Advance Care Planning and End-of-Life Care, will be held in Munich. The conference theme, ’Advance Care Planning: Key to Patient-Centred Care’, expresses the increasing relevance of ACP for providing good quality care tailored to the patient’s preferences near the end of life. Contributors and participants are welcome; the Call for Abstracts will be open until 15 February.

Links

  • Benchmark paper ‘Improving Hospice and Palliative Care in Germany’. (The German version ’Verbesserung der Hospiz- und Palliativversorgung in Deutschland’ is available to download).
  • in der Schmitten J, Lex K, Mellert C, Rotharmel S, Wegscheider K, Marckmann G. Implementing an advance care planning program in German nursing homes: results of an inter-regionally controlled intervention trial. Dtsch Arztebl Int 2014;111(4):50-7. Download full article.
  • Advance Care Planning – Key to Patient-Centered Care: 5th International Conference on Advance Care Planning and End-of-Life Care, 9-12 September 2015. See more on conference website  and call for abstracts (deadline: 15 February 2015).
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3 Responses to Advance Care Planning in German nursing homes – on target for nationwide implementation?

  1. Schmidlin says:

    Thank you for this interesting post about advanced care planning in Germany. Its always a challenge to fill these out and to try to imagine what could happen and what one would want or not – a fine line to know how many detailed scenarios a old person does want to hear about, and what is rather fear – inducing… It would be great to know, how the ACP specialist were trained in communication.
    An other question is for the author Dr Jürgen in der Schmitten about his very compelling patient story: Did Lilly survive 10 full days without any fluid? Its seams a long time. Or did she maybe receive some fluid at the time of the acute stroke, until her ACP was helping to decide to stop it? Hope you don’t mind me asking! Best wishes
    Esther Schmidlin, nurse specialist in dpalliative care, Switzerland

    • Thank you very much for your comment! The non-physician facilitators in our ACP project “beizeiten begleiten” received a 20 hour training course (which we developed based on the Respecting Choices program), followed by regular supervision and support. – Yes, Lilly did not receive any fluids according to her documented wishes and died 10 days after she had suffered the stroke. Best wishes, also from Jürgen in der Schmitten, Georg

  2. Schmidlin says:

    Thank you for your replay! May I ask one more question: How do you call “Advanced Care Planning” in Germain, how do you translate it? Best wishes, Esther

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