What are the best practices for palliative care? Turns out that the answer depends on whom you ask. An important new comparative study looked at palliative care guidelines and official practice statements for end-of-life care provided by over 34 health organizations. The groups chosen for study included seven international organizations and 27 organizations operating at the national level in Australia, Canada, the United Kingdom, and the United States. Researchers analyzed a total of 56 documents and came up with a model summary of the most prominent and consistent recommendations. The study titled "What 'best practice' could be in Palliative Care: an analysis of statements on practice and ethics expressed by the main Health Organizations" by Gaia Barazzetti, Claudia Borreani, Guido Miccinesi, and Franco Toscani appeared in BMC Palliative Care 2010, 9:1. The full text is available online (http://www.biomedcentral.com/1472-684X/9/1).
The researchers compared the documents using a framework of components for end-of-life care derived from literature, using four main "areas" and 12 "sub-areas". The study is worth reading just to see the meta-framework of topics that were used for the evaluation. The researchers found that topics related to symptom control as well as those related to relational and social issues are more widely covered by the documents than topics related to "preparation" and to "existential condition".
The overall conclusion of the study is that "An integrated model of the best palliative care practice is generally lacking in the documents. It might be argued that the lack of a fixed and coherent model is due to the relevance of unavoidable context issues in palliative care, such as specific cultural settings, patient-centred variables, and family specificity. The implication is that palliative care staff have continuously to adapt their model of caring to the specific needs and values of each patient, more than applying a fixed, although maybe comprehensive, care model."
One area where there was generally high agreement was on topic E3 - "Participation in the decision-making process". All documents maintain that patients should be involved in every decision concerning treatments. Up to 12 documents by international and national organizations clearly state that patients have a right to make informed decisions on treatments, including the right to refuse treatments. Five of the documents provide indications on documentation such as advance directives, formal living wills, and the designation of proxy decision-makers, all of which are means to determine and honor the patient's choices.
That said, when the rubber hits the road for withdrawing life-sustaining treatments the physician is clearly seen as having the critical decision. The authors say that "(w)hile there is a general agreement between the documents that patients should take part in end-of-life choices, withdrawing and withholding of life-sustaining treatments are viewed as the result of an evaluation that is mainly up to the doctor. Indeed, the consistency of end-of-life choices with the patient's wishes is given only a minor relevance." The medical-centic approach also reveals itself in other ways. The statements do not give much emphasis to the topics of "being in control of oneself" and minimizing burden on the family. Definition of quality of life at the end of life is lacking, despite the fact that it should be key outcome measure.
We have come a long way in the past 15 years, when palliative medicine was in its infancy as a major specialty. This study shows that practice guidelines are improving, but still have a way to go.