"Does Advance Care Planning Matter?"

So the question is posed in the title of a new study of the care received at end-of-life by 101 Flemish nursing home residents with dementia.

Does advance care planning matter? To put the question another way, for people with dementia who put a plan in place for their end-of-life care prior to losing their mental capacity, did they get the care they planned for? What was their "quality of dying"?

The study, published in PLOS One earlier this month by Belgian researchers, differed from most studies of advance care planning and the use of written advance directives. Other studies usually focused on a general population and not people with dementia; or they focused on care processes or care utilization and its association with advance care planning.

The Belgian researchers chose a difference focus: instead, their interest lay in relating different forms of advance care planning to outcomes and to what the researchers refer to as "quality of dying."

Advance Care Planning by the 101 Residents with Dementia
* 17.5% of the residents had executed a written advance directive; 80% had not
* In 56.7% of the cases, general practitioners had written physician orders for end-of-life care of their patients
* In 3.2% of the cases, GPs had discussed their orders with their patients
* In 3.7% of the cases, the resident’s nurse spoke with the residents concerning medical treatment and desired goals of care at end-of-life

The Association between Advance Care Planning and Quality of Dying: What the Researchers Found
1. Written advance directives matter.
Residents who had not executed an advance directive were three times more likely to experience emotional distress at end-of-life than who had executed a directive. Those residents who had a do-not-hospitalize order were also less likely to experience distress than those who did not.

2. GP orders do not matter.
The existence of orders by the resident’s general practitioner was not associated with the resident’s quality of dying.

3. Conversations by the resident and the care team do not matter.
The researchers found little or no association between discussions about end-of-life care engaged in by the resident and the care team (nurses, techs, physicians) and the resident’s quality of dying.

4. Conversations by the nurse with relatives matter: but negatively.
The researchers found that discussions between the nurse and a relative about end-of-life care was associated negatively with quality of dying: that is, with the resident’s discomfort, restlessness, gurgling, and difficulty swallowing.
Speculating upon these negative associations, the researchers suggested as on plausible reason that the conversation came too late during the course of the loved one’s illness. Relatives had not been sufficiently educated about what to expect during their loved one’s dying process.

We can’t truly know whether persons with dementia who had planned their care in advance in fact experienced less fear and anxiety while dying. Nonetheless, the Belgian researchers judged this difference in quality of dying a “striking finding,” considering that previous studies mainly show the association between advance care planning and the use of end-of-life care services – that is, more hospice services and less aggressive medical treatment.

The mere existence of written advance directives, the researchers caution, without expressed end-of-life treatment preferences may not contribute meaningfully to the dying person’s emotional comfort and lack of distress. In other words, filling out forms may not be enough to improve quality of dying.

The lesson: people with dementia, their relatives, and their caregivers should begin the process of advance care planning as early as possible.

The study, by An Vandervoort and colleagues, titled Quality of Dying in Nursing Home Residents Dying with Dementia: Does Advanced Care Planning Matter? A Nationwide Postmortem Study, is available at PLOS One here: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0091130


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