Abstract of Keynote presentation
Policies and Guidelines - What are their status, how are they developed and how are they implemented?
Swedish health care is characterized by a high degree of decentralisation. Even so the Swedish health care law states that the care shall be of high quality and given equally.
The care shall be given with respect for the patient’s integrity and autonomy. In spite of the two statements when comparisons are made they end up showing great differences in praxis and outcome. Care is not delivered equally. There are also indications of discrimination based on ethnicity and/or age. These aspects are to be considered when discussing treatments and activities in the end of life care.
The ethical principles of doing good vs do no harm vs respect of autonomy may easily come into conflict; especially when there is lack of time and competence for an in depth discussion with the patient or his/her representative. This is the background for efforts made by the various authorities involved in surveillance, legislation, recommendations and guidelines.
Palliative care, a prioritised area according to the law on principles for priority settings is a discipline with shortage of beds, low status and little research. These facts also constitute contradictory signals by society.
The actors involved are: the Parliament, the Boards, Councils and Authorities under the government, the County Councils, the professional organisations in that order reflecting a hierarchy in impact of the documents issued by the respective actor.
The parliament obviously issues laws and the health care law includes paragraphs on the duties of health care personnel to only undertake procedures and use methods that are in accordance with scientific evidence or well known experience. The objective of the health care according to the health care law is to promote health.
The Boards, councils and authorities under the government involved in questions regarding handling and treatment of patients at the end of life include the National Board for Health and Welfare (Socialstyrelsen), the Swedish National Council on Medical Ethics( SMER), the Swedish Research Council (VR). The National Board issues both norms and guidelines, the other organisations do not have the competence to issue norms but may produce guidelines.
Norms are to be followed whereas guidelines are more of a recommendation but may be used as underlying material for a surveillance verdict in a case where there is a complaint, either from the care itself or from a patient representative. Norms are seldom evidence based but are supposed to reflect what is considered “right”. The ambition by the National Board is to use evidence extracted through HTA methodology as much as possible when producing guidelines. The level of evidence is obviously low in this area due to character of the question. The authorities have to rely on other mechanisms - consensus and Delphi techniques involving experts and representatives of the public with the best legitimacy when issuing guidelines and recommendations. The health care law as well as the guidelines underline that the care is to be given according to the patients preferences but it also includes the health care personnel’s right to abstain from procedures deemed to be without benefit to the patient, irrespective of the patient’s requests. It also states that the health care personnel are not allowed to participate in taking a persons life.
The same methodology – consensus or Delphi- is used by the professional organisations. The perspectives may differ, however, in that the Boards etc. under the government may have more of a societal or patient group perspective whereas the professional organisations often have a professional perspective or the perspective of the individual patient. All actors however aim at adhering to the different international ethical codes on human rights.
Arranged by the Centre for Research Ethics & Bioethics, in collaboration with:
Barncancerfonden (the Swedish Childhood Cancer Foundation)
Läkartidningen (the Journal of the Swedish Medical Association)
Riksbankens Jubileumsfond (Bank of Sweden Tercentenary Foundation)
Vårdal Foundation for Health Care and Allergy Research
Vårdetik i livets slutskede angår alla