The key to the peaceful death most of us want, surrounded at home by loved ones and free from tubes and machines, is a frank talk with one’s doctor. Sadly, an alarming new study shows the impact of such a talk depends on a patient’s race. Investigators from Dana-Farber Cancer Institute found end-of-life discussions helped white patients, but not black patients, avoid aggressive, futile treatment in their last days and die peacefully.
Why would white patients who tell their doctors to forego painful and futile end-of-life technology get their wish granted, while African Americans who tell their doctors the same thing get ignored? I won’t speculate on a dominant cause because surely, myriad factors may come into play.
I will say this: The specter of the Tuskegee Syphilis Study hovers over this study, as it does over all evidence of racial discrimination in health care. From 1928, until exposed in 1972, the US Public Health Service disregarded basic principles of ethical research to study the course of untreated syphilis. Without informing thousands of black men of their diagnosis or obtaining informed consent, it assigned them to a non-treatment group. As we all know, the study demonstrated treating syphilis is better than not treating it.
Understandably, the ghost of Tuskegee haunts our nation’s black population and many harbor suspicions that the medical establishment withholds desirable treatments from black people. Shamefully, investigation into cardiac interventions and outcomes has substantiated those suspicions. Institutional bias and economic factors probably still contribute to many black Americans getting substandard medical care.
How does this realization play out in end-of-life care? In the new study, black and white patients in roughly equal numbers broached the topic of end-of-life treatment preferences with their doctors. But what followed those discussions was far from equal. Black patients were less likely to learn their illness was terminal. Many of both races who did understand their prognosis established an understanding with their doctors that a “do-not-resuscitate” order (DNR) would be placed on their chart.
Oddly, the DNR order had little impact on the care of black patients. Physicians were as likely to deliver aggressive end-of-life treatment to black patients with a DNR as to those without one. And this means they received inferior care. Because a steady stream of recent research reveals that dying patients subjected to invasive, aggressive technologies suffer more at the end of life, but they do not live longer than those who forego aggressive treatment and receive palliative care.
Does the ghost of Tuskegee haunt medical providers and exert subtle pressure to provide aggressive end-of-life care to black patients rather than risk the perception of withheld treatment? Do families of black patients think of Tuskegee and press for treatment they suspect a white patient would receive? Is one legacy of Tuskegee that doctors provide more burdensome treatment to their dying black patients, as some misguided reparation for past discrimination and abuse?
It would be unfortunate for the lesson of Tuskegee to become “treatment is always better than non-treatment.” That’s not the proper lesson of Tuskegee. Nor is the proper lesson that human research with a placebo arm is inherently unethical. No, the best lesson from the Tuskegee study is that decisions about treatment choices and decisions about participation in human research reside with patients, not doctors. The shameful ethical lapse at Tuskegee was not chiefly the failure to treat, but the failure to respect patients, inform them fully and obtain their voluntary consent. Exposure of the Tuskegee study led to widespread recognition that informed healthcare decision-making is a civil right. That civil right demands that doctors place patients’ decisions and patients’ values at the center of end-of-life care.
Not clearly recognizing the principle that was violated, doctors may be perpetuating the nightmare of Tuskegee at the end of life. This study shows that physicians who behave as though more is better and aggressive treatment is preferable to palliation and watchful waiting may impose needless suffering on black patients in their final days.
All patients have the right to comprehensive, candid information in order to make valid decisions and give informed consent. Decisions about end-of-life care must begin and end with the autonomous patient. Only when doctors put all patients – black, white or whatever — at the center of care, provide them full information, let them guide decisions and give honest consent, can they hope to banish the specter of Tuskegee from medical care.