Why Sparky Anderson’s death occurred so soon after he went to hospice.
Baseball fans across the U.S. are saddened by the loss of the first manager to win World Series championships in both leagues (Tony LaRussa is the other); many are likely puzzled as to why his death came so closely on the heels of his family’s announcement about hospice.
Among patients, hospice in the U.S. has mixed connotations; some view it as the desirable way to make a final exit, others perceive the very word pejoratively as coded language for ‘giving up all hope.’
The modern hospice movement can be traced back to Dame Cicely Saunders, who founded St. Christopher’s Hospice in London in the mid-1960s. With her nursing background, Dame Saunders’ experiences led her to formulate the principles of palliative care: alleviating pain and suffering to the the maximal extent possible, with the ultimate promise of bringing dignity to the dying.
The difficult part for a patient like Anderson, his family, and his doctors is deciding when to initiate the referral to hospice. Making the decision is a gradual process, the key part of which is reaching acceptance of imminent death. Obviously, many patients and their families never reach this stage.
In order to qualify for hospice, a patient must have a terminal diagnosis, defined as six months or fewer of remaining life. This is fairly straightforward with cancer diagnoses, which are staged precisely and tend to move along predictable trajectories. Prognosis is much more challenging for patients in the end stages of chronic diseases like congestive heart failure, emphysema, and dementia, which is the condition that Anderson was reported to have.
Dementia has multiple causes, the most common being Alzheimer’s, which occurs when abnormal particles called neurofibrillary tangles and beta amyloid protein build up in the brain, impairing the neurochemical signalling between neurons and their synapses. Dementia is also caused by strokes (“cerebrovascular disease”) and less commonly by Parkinson’s and rarer conditions like Lewy Body disease and something called progressive supranuclear palsy (PSP). These latter two typically progress more quickly than Alzheimer’s, but there is wide variation. Ultimately, what they share in common is the fact that they are progressive and irreversible, robbing victims of their memories, and their ability to think, speak, walk, and finally, eat.
Since those afflicted with dementia are often lost in their brain fog, they become what we doctors call “unreliable historians.” Assessing their degree of pain or discomfort is extraordinarily challenging, which can lead to delays in recommending hospice. Caregivers have major struggles in providing care for loved ones with dementia, such that they often neglect their own health. Yet finally allowing a loved one to be placed in a nursing home or referred to hospice can feel like defeat after an investment of so much time and love.
News accounts of Anderson’s hospice referral (and now his obituary) say only that he suffered from “complications of dementia,” without mentioning the cause. On one hand this is not surprising, given that the only way to really know the cause of dementia is to perform a brain biopsy. For obvious reasons, this is not something that patients or their caregivers are eager to undertake, especially since there are no meaningful treatments that arrest or reverse dementia. Neuropsychiatric testing, which assesses multiple cognitive domains (e.g. memory, attention, concentration, organization), can reliably determine if an individual has dementia, and give clues to what areas of the brain are affected. Patients and families thus can have more of an idea of how quickly to expect the dementia to progress and therefore plan accordingly.
Anderson’s case differs from that of another famous dementia-sufferer, former President Ronald Reagan. His dementia was declared in a publicly-released 1994 letter that said: ”I have recently been told that I am one of millions of Americans who will be [sic] afflicted with Alzheimer’s disease.” Courageous for going public with his condition, his family’s effort did much to increase and de-stigmatize dementia in America. Reagan lived another ten years.
Sparky Anderson’s slide seems so much more precipitous. Of course, it could be because he had a more rapidly progressive form of dementia than Alzheimer’s. It might also be because his family only decided to enroll him in hospice when he was literally on his deathbed. Ask any hospice physician or nurse, and you will likely get an earful about why patients are referred so late in the course of their illnesses. It turns out that the median length of stay in hospice is a mere three weeks; ten percent of hospice patients die within the first twenty-four hours they are there.
A whole subfield of medicine has arisen to encourage Americans to seek comfort over cure sooner. One recent study even showed that lung cancer patients randomly assigned to treatment and palliative care outlived those who had just treatment.
Poetically, Anderson himself said it best more than a year ago at a Detroit event celebrating the 25th anniversary of his World Series champion Tigers: “Think about this now, there will be four or five of these guys together again, maybe, but never all together again.
“I’m 75. I know I ain’t gonna make it.”