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National guideline changed Dutch palliative sedation practices
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The introduction of a national guideline for continuous palliative sedation in the Netherlands resulted in improved drug prescribing and increased patient involvement in decision making, according to data from a follow-up study.
Researchers compared the practice of continuous sedation both before and after the guideline was introduced on Dec. 7, 2005. The baseline data were collected from 494 medical specialists, general practitioners and nursing home physicians. After the guidelines were introduced, researchers followed-up with the same cohort of physicians who were asked to report on their last case of deep and continuous sedation.
About 70% of eligible physicians responded to the follow-up questionnaire; 160 reported a last case of continuous sedation in both the baseline and follow-up studies. Patient involvement in decision making regarding continuous sedation increased from 72.3% to 82.2% between both periods (P<.001). Pain and dyspnea were the most common reasons for initiating continuous sedation during both periods; exhaustion increased as an indication for sedation, from 31.4% to 56.0%.
In accordance with the introduced recommendations, the prescribing of benzodiazepines for continuous sedation increased from 69.9% before the guideline to 90.4% (P<.001) after. Compared with the first measurement, the decision against giving artificial hydration during sedation was more explicit in the second measurement (56.3% vs. 78.8%). Of those who decided against artificial hydration, 34.2% believed sedation shortened patient life due to dehydration.
In an accompanying editorial, Jamie H. Von Roenn, MD, director of palliative care in the division of hematology/oncology at the Feinberg School of Medicine at Northwestern University, and Charles F. von Gunten, MD, PhD, provost at The Institute for Palliative Medicine at San Diego Hospice, question why choosing the right drugs for sedation is more important than ensuring appropriate palliative care options were exhausted before sedation was initiated. “Most palliative care experts would agree that palliative sedation has its place — at the end of an intensive team approach to the relief of refractory pain,” they wrote. – by Stacey L. Adams
Hasselaar JGJ. Arch Intern Med. 2009;169:430-437.
This paper is interesting. The Dutch have been in the forefront of [palliative sedation] for a long time, and this seems to be something they thought about as an alternative [to euthanasia], since euthanasia has such negative connotations and legal and ethical issues. There are more and more articles about palliative sedation as an ethical practice in the right patient. It’s good that [someone] finally sat down and provided some guidelines for people, although it’s not really the sort of guideline we’re used to in this country.
They do point out that it can be used if you can’t get a patient’s symptoms under control. In those cases you would probably continue to provide artificial nutrition and hydration because the goal is to let the analgesia medication, or radiation therapy or whatever else you’re using to control intractable symptoms, start to work, but sedate the patient through it so they’re not suffering intolerably. These guidelines don’t really deal with that patient population, and they say that right off the bat. These [guidelines] are for patients who have an expected time to death of one to two weeks, which is an important distinction of this, lest people read it and get up in arms because there are two different ways you can administer palliative sedation and they’re dealing with the first one.
The physicians felt that [palliative sedation] hastened the patient’s death, although there was no statistical evidence. Most patients died within about two days, both before and after the guidelines, but it’s interesting to see how peoples’ perceptions of what they were doing change. There may not be enough evidence to show that this sort of intervention is going to hasten death because they selected such ill patients. The only corollary is that exhaustion was used more often as the reason for sedation. This is interesting because I’ve not come across this concept, I’ve come across existential suffering or psychological pain and suffering — we’re not just treating the patient’s physical pain symptoms — but there’s a multitude of other types of pain for which we may not be adequately able to control. I assume when they say ‘exhaustion’ they’re talking about the non-physical types; the psychosocial pain, the psychological pain, the existential pain, and I know a lot of people are very wary of using it for that reason.
The question becomes whether or not one has really spent the time getting chaplains and social workers and exploring these issues; however, a patient that is that terminal and only has one to two weeks to live is usually not alert and awake enough to do the work on those issues because they require talking with people for periods of time and a lot of thinking.
They seem to be involving the family [in palliative care] now more than before and that’s a huge factor. In other countries outside of North America, families are told what’s going to happen by the health care team. In European countries, Scandinavian countries and Asian countries, a lot of times there’s a more paternalistic attitude about this. Perhaps we’re too free in this country with letting people make decisions that they’re not necessarily capable of making. In the other countries maybe they don’t include the families enough, but this seemed like it opened up a lot of dialogue. A follow-up study of the survivors of the patients of terminal sedation, both before the guidelines and after, would indicate whether involving the family provides peace of mind and peace with what has occurred or has any affect on the bereavement period. We don’t know that sedated patients are not in pain or suffering, but at that point often times you’re treating the family more than the patients themselves.
– Christine Zawistowski, MD
Pediatric Palliative Care and Intensive Care Doctor,
The Cancer Institute of New Jersey, and Bristol Myer Squibb Children’s Hospital
at Robert Wood Johnson University Hospital, New Brunswick, N.J.