JOURNEY OF A DECADE: Ronald Reagan, seen here with wife Nancy, was diagnosed with Alzheimer’s in 1994

That Ronald Reagan’s death has reinvigorated the debate on stem cell research is not surprising. Ever since he announced in 1994 that he had Alzheimer’s disease, both he and his wife, Nancy, had been ardent supporters of increased research financing for the disease. Nancy Reagan has also publicly advocated the use of stem cells. But a more immediate discussion, and perhaps a more helpful one, would be to address how Alzheimer’s patients and their families, lacking effective treatments, deal with the gruelling realities of the disease over time. The avoidance of this topic mirrors the Reagan family’s own reluctance to reveal details of Reagan’s deterioration from Alzheimer’s during the past decade.

The Reagans’ decision to not go public, while understandable, nevertheless deprived Americans of the opportunity to learn how the family confronted questions crucially relevant to Alzheimer’s patients and their families. Did Reagan fill out an advance directive indicating what types of medical treatments he did or did not want as he deteriorated? Why did the family choose to have his broken hip repaired in 2001 despite his dementia? Was Reagan’s pneumonia, the cause of his death, aggressively treated with antibiotics, or was the disease allowed to be the “old man’s friend?”

These difficult questions about cutting back on medical treatment came to public attention in the 1975 case of Karen Ann Quinlan, a 21-year-old who became irreversibly comatose after mixing Valium and alcohol. After two months, her parents asked the hospital to disconnect the ventilator that was apparently prolonging her life. The hospital declined, leading to several court cases. Ultimately, in 1976, the New Jersey Supreme Court ruled in favour of the parents, although Karen Ann Quinlan lived for nine more years after the ventilator was disconnected.

The Quinlan case popularised the living will, a type of advance directive that permits the withholding of certain treatments if people became seriously ill without chance of meaningful recovery. Another directive is a healthcare proxy, which allows patients to designate someone to be their decision-maker if they lose the ability to make choices.

Alzheimer’s, which afflicts over 4 million Americans, is ideally suited for advance directives because patients in its early stages can still communicate their wishes. As is the case for patients with other diseases, however, the majority of Alzheimer’s patients have no advance directive. That leaves most families without guideposts for making decisions. As a result, intensive care units are full of patients whose dementia may worsen, even if they recover from an acute illness.

Doing more as opposed to less has become the default option for two reasons. First, treating acute illness is what doctors are trained to do. Second, pulling back, without clear wishes from the patient, may evoke feelings of guilt, and even the idea that the loved one is being “killed”. This instinct to “do everything” is particularly ill suited to Alzheimer’s patients. Over the last 20 years, its victims and their relatives have written elegantly about the loss of personhood that accompanies the later stages of the disease. The day-to-day realities are grim for both patients and their caretakers.

Nancy Reagan, and the Reagans’ daughter, Patti Davis, in particular, have indicated that they had lost Ronald Reagan some time ago. As the disease progresses, its victims stop talking; they no longer recognise friends and family; they can’t perform ordinary tasks like driving or walking down a street alone. They become incontinent. Sometimes they stay up all night, becoming increasingly agitated and paranoid.

The option of declining aggressive treatments may be an uncomfortable topic, but it should be widely discussed. Some patients who complete advance directives, for example, explicitly decline hip surgery like the one Reagan underwent, as well as antibiotics to treat infections. The discomfort caused by these conditions can be eased with painkillers or sedatives. As with many degenerative diseases, the progression of Alzheimer’s has implications for how patients choose among treatments as they complete advance directives. Withholding medical help may be inappropriate when patients can still enjoy pastimes like eating or listening to music. But curtailing treatment may be appropriate later, as may be allowing patients who no longer desire food to stop eating.

The Reagans’ advocacy of more research that may lead to the prevention of Alzheimer’s or its cure is laudable, although treatment breakthroughs may still be far in the future. In the interim, frank acknowledgment of the difficult choices the family faced could open a broader public discussion about the value, and the quality, of life for Alzheimer’s patients during the “long goodbye”. As Patti Davis wrote in 2000, neither patients with dementia nor their families should fear death.

When his illness was diagnosed as Alzheimer’s, Ronald Reagan eloquently stated that he would “continue to share life’s journey with my beloved Nancy and my family”. It would be interesting to know what he did — or did not — want that journey to entail.