PRO: Advance care planning- saint or sinner?

Prof. dr. Cees Hertogh, Claud Regnard, Jane Seymour

PRO

Cees Hertogh

The term ‘advance care planning’ originated at a conference of a multidisciplinary group of end-of-life researchers at Squam Lake, New Hampshire in 1993. Their task was to reflect on the implementation of the Patient Self-Determination Act and the practice of advance directives (AD). The conclusion of this gathering was, that AD are inadequate tools for assuring good care and decision making at the end of life. By introducing the more global term of advance care planning, the attendants of the Squam Lake conference intended to move away from legal documents and check lists of interventions to be accepted or denied, to a focus on process and dialogue on patient goals in end of life care.¹

Almost at the same time, an intriguing parallel discussion took place in our country. In 1993 a commission of the Royal Dutch Medical Association (KNMG) published a discussion paper on the acceptability of life terminating interventions in severely demented patients with an advance directive for euthanasia.² This was the starting point of a still ongoing societal debate, that also challenged the Dutch organization of nursing home physicians (NVVA, today Verenso) to define her position, since in the more advanced stages of the disease the majority of people with dementia are admitted to a nursing home. In her 1997 policy statement, the NVVA/Verenso stipulated that key to high quality medical care for people with dementia are 1) a pro-active palliative care approach combined with 2) an anticipatory care policy based on care goals defined in consultation with the patient and her family.^3,4 In this policy paper Verenso also stated her position with regard to the acceptability of euthanasia in advanced dementia, but this topic is beyond the scope of this contribution. Relevant here is the parallel with the debate at the other side of the ocean, because independent from the Squam Lake Conference, the Verenso policy statement arrived at a similar conclusion: AD’s are inferior instruments to guarantee good quality of care in the final years of life. And where Squam Lake coined the term ‘advance care planning’, Verenso introduced the concept of ‘anticiperend zorgbeleid’.

Above I translated this term as ‘anticipatory care policy’, realizing that it is as difficult to find the appropriate words in the English language as it is to find adequate Dutch words for ‘advance care planning’. Nonetheless, both terms very much cover the same concept. An anticipatory care policy defines upper and lower borders of medical care within the overarching framework of a palliative care approach, guided by individual care goals to be evaluated on a regular basis and adjusted when necessary in dialogue with patients and/or relatives and taking into account the course of the disease.^3,4 Determining which of the available treatment options is most appropriate in an individual case is a matter that needs to be negotiated at the time an acute problem arrives, but having an anticipatory policy in place can guide the discussion. Thus, an anticipatory care policy is a valuable form of preventive medicine that helps to ‘prepare the soil’ and avoid crisis decision making which may result in undesired interventions.

Earlier studies already showed, that Dutch nursing home residents seldom die in hospitals and recently Simone Hendriks was able to demonstrate that medical care in Dutch nursing homes is almost always provided in accordance with earlier established (anticipatory) care goals.⁵ Only in a minority of cases patients were hospitalized despite a do-not-hospitalize order, but most frequently this was because of a fracture. These findings are quite encouraging: in my view they materialize the thesis that good quality advance care planning belongs to the ‘core business’ of elderly care medicine.⁶