ABSTRACT: This essay opens with background information about the concept of "medical futility" and the regulation of non-treatment decisions in Dutch neonatology. The regulations include a list of criteria for predicting the baby's future quality of life. The second part presents the findings from interviews with fourteen Dutch neonatologists on the mannerin which they apply the criteria in their practice.
The concept of "medical futility" has been the object of debate in the medical literature. (1) "Futility" is a criterion for decision-making for withholding and withdrawal of life-prolonging medical treatment in individual cases. Treatment is "medically futile" if its benefit to the patient is insufficient to justify its initiation or continuation. The core of the "futility" debate is the presence of "quality of life" judgments in "futility" assessments in individual cases. Through self-regulation, the Dutch medical profession introduced a number of criteria that, taken together, may be of help to predict a baby's future "quality of life" and to make a decision for or against further life-prolonging treatment.
Reports by the Dutch Pediatrics Association and the Royal Dutch Medical Association
In the early 1990s, the Dutch Association of Pediatrics (2) and the Dutch Medical Association (3) issued guidelines on end-of-life decisions in neonatology. (4) According to the reports, life-prolonging treatment is "impossible" if the baby has "no chance of survival," and "futile" if "the expectations for the baby's future are so poor that treatment would be pointless." (5) This article is devoted exclusively to the second category of "futile" cases.
The reports regulate the decision-making process, when withholding or withdrawal of life-prolonging treatment on grounds of "medical futility" is considered. The decision-making process should involve the entire medical team, nurses included, and the baby's parents. Non-treatment decisions should be documented, with adequate explanations, in the patient's medical file. (6)
According to the reports, the choice for or against life-prolonging treatment should be primarily based upon the condition of the infant at the time the decision is made. However, the infant's predictable future condition should be taken into account as well, with particular attention to:
* expected extent of suffering (in terms of permanent functional impairments, pain, anxiety, prospects for the future and room for hope);
* life expectancy;
* expected possibilities of communication (both verbal and non-verbal) and interpersonal contact;
* expected possibilities of self-sufficiency (ability to sit, walk, and take care of oneself independently);
* expected possibilities of personal development (ability to read, write and work);
* extent of dependency on medical care and impact of further treatment on the patient (for example, frequency of hospitalizations). (7)
The reports stress the relevance of "proportionality." "Medical futility" considerations are especially relevant where there are significant chances that the treatment will cause a harm that is not proportional to the benefit.
No mention is made in the reports of the costs of the treatment in financial terms. The reports do not provide an ethical and legal basis for excluding patients from access to medical care due to their potential monetary cost to society. The term used in the reports is "personal development" and not "productivity." The focus is on the individual's ability to evolve and express his personality, not on his potential for being an economic asset to society.
While there have been various reports after 1992 dealing with various aspects of regulation of end-of-life decisions, the basic criteria laid down in the two reports have remained unchanged.
What Is Known About Dutch Medical Practice?
Medical research in the 1990s and 2000s investigated end-of-life decisions in Dutch neonatology. This included withholding and withdrawal of treatment on grounds of "medical futility." (8) Some studies in the Netherlands (9) and other countries (10) focused on doctors' justifications for non-treatment decisions and on the application of "futility" in medical practice.
The Dutch studies show that the decision-making procedure designed in the two professional reports has been fully realized in medical practice. A 2005 study based on review of death certificates shows that the parents are involved in the decision-making process in about 80% of cases of end-of-life decisions in neonatology. (11) The most recent study reports that the parents are involved in 100% of cases. (12) This study was based on a very large sample, because the researchers reviewed all...