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As a member of the National Academy of Medicine I have pledged to "advise the nation." Political discussions have raised doubts about the continued relevance of science, and as a health scientist I feel a responsibility to provide my input and advice to the public discussion. Science is the systematic search for facts and truth. Health science is the application of facts and truth to improving health.
We do not live in a "post-truth" world. Truth is an eternal value, and we de-value truth at our peril. Assertion of "alternative facts" does not make them true. Denying the scientific fact of climate change does not stop its consequences, and there is strong consensus climate change is already having negative health consequences. Attacking science to justify delaying the transition from dependence on fossil fuels to cleaner energy will increase mortality and morbidity.
The current enthusiasm to reduce regulations on business appears to ignore the health effects that were the justifications for many regulations in the first place. As a high-profile example, regulating the burning of coal was meant to reduce lung disease, other chronic diseases, harm to plants, and carbon emissions. But regulation of many chemicals, foods, automobiles, and other products were designed to prevent health problems, so removing or weakening those regulations is likely to increase mortality and morbidity.
The current proposal to reshape the health insurance system that will likely force an estimated 24 million people out of the insurance system is an unethical act that I believe health professionals have reason to oppose. That opposition should include educating decision makers and voters about the likely consequences of proposed actions.
Facts are not immutable, and scientific progress will update facts with better evidence. But we are better off making decisions based on the best facts we have at the moment rather than ignoring, denying, or using alternative facts that are often championed by those with specific economic interests. Given the expected health consequences of current government actions and proposals, we scientists have an opportunity to raise our voices to educate, and persuade when possible, in support of science-based decisions. If we believe in evidence, we must act to defend science. To be silent is to be complicit.
James F Sallis PhD
Distinguished Professor Emeritus
Department of Family Medicine and Public Health
University of California, San Diego
California Gov. Jerry Brown signed the “End of Life Act” on October 5, making it legal for doctors in California to prescribe life-ending drugs to terminally ill patients who choose to die. Oregon, Washington, Vermont, and Montana have passed similar laws, and 23 other states have aid-in-dying bills in their legislatures.
Rates of desire for death among terminally ill patients vary according to population and assessment methods, but they have been estimated at 17-45%, including fleeting desire to die. These estimates are consistent with the fact that a minority of terminal patients in Oregon request lethal prescriptions. Most, but not all, of these patients go on to use their prescriptions.
End of Life Act Details
Correlates of the desire to die among terminally ill patients include major depression, hopelessness (independent of major depression), perceiving oneself as a burden to others, poor family cohesion, and having both a small number and a poor quality of social supports.
It is impossible to determine the “efficacy” of aid-in-dying policies using ordinary case-comparisons of patients who chose to die versus those who did not. However, there are other things we can do as professionals. When a patient expresses desire to die, we can assess the underlying reasons in an effort to present all available options. And we can build an evidence base for how to best support patients and providers in this process.
Shared decision making research could increase insight into the role of family functioning and burden perception on desire to die. Better quality social support may prevent patients from developing a desire to die. Effects of intervening on predictors of patient desire to die could guide clinical decision making. Research on doctor-patient communication might inform how providers discuss this subject. Providing patients the best opportunity to make a well-informed decision is important to our role as health professionals.
We must also understand ourselves. Why do (or don’t) we support patients in this decision process? What assumptions do we make about patients’ desires to die? About their medical and mental conditions? As scientists and practitioners, we must be open to considering our work differently.
Our way forward must include integrating mental health care into primary care delivery and developing effective assessments of the desire to die. These are not simple or easy goals, but it is our duty to improve and evolve the ways in which we serve the public.
What health decision making research is most critical, right now, for helping patients better navigate aid-in-dying conversations and options? Tell us what you think by answering the poll to the right. Then view the results and join our LinkedIn discussion.