Dying Made Public
Dying should be a private process among the patient, family, physician and other health professionals. Words like “grave,” “guarded” and “serious” have been used to let other people know that the patient may not survive. The media, always curious about the death of famous people, would report the overall condition and tell stories of their lives but not usually the gory details of the dying process. Slow deaths may be well-managed and dignified but are not pretty in their details. Kind last words before going into a lasting sleep are great for movies but are rarely seen in practice.
America and the world have been subjected to the gory details of two dying processes recently: Terri Schiavo and Pope John Paul II. The medical conditions of these famous patients have been reported in detail, with rampant interpretation by the media and a curious public. Some people’s extreme views of life and death have come out of the woodwork and, in the case of Terri Schiavo, further divided the nation. I will not enter into the tragedy of Terri Schiavo’s family dysfunction and legal dispute. Rather, I will discuss a new situation that medicine finds itself in now that medical information is available to everyone.
The Internet has given everyone access to complete medical information. Even the entire medical school curriculum is now available online. This has been referred to as the democratization of information. No more do we physicians hold the keys to medical information with patients coming to us for what we have and they don’t. The physician’s work has shifted from a repository of information to interpretation and advice. We have always done both, but the patient’s perspective is now both informed and often misinformed. This has caused a motivated public to collectively become like second-year medical students: just enough information to be dangerous. Don’t misunderstand me. I am a big fan of the Internet, and I support the public’s access to information, including medical. It is just that we face the downside of this everyday in our offices.
From the Terri Schiavo case, we know that we have much work to do to help the public understand how we die. Hospice and palliative care physicians, nurses and counselors have been working for decades, reassuring families that a lack of food and fluids is part of the natural process of dying. Usually, this is quite peaceful, and, if not, we have good medications to make it so. Forcing food and fluids usually prolongs the dying process and is more likely to increase suffering. One by one, families have learned this, and the hospice movement has been highly successful. In the Schiavo case, reports of “starvation” and “painful dehydration” by the media and other persons partaking in the spectacle outside the hospice make us cringe. Palliative and hospice care will now have to take on a more public role in addition to good private work.
The Pope’s case was handled much better. After weeks of hospitalizations filled with reports of feeding tubes, tracheotomy, breathing difficulties and our wondering how long the obviously dying Pope would be subjected to medical interventions, he was allowed to die at home. Death as the final act of a great life was honored, and the attention on the dying part gratefully went away.
While these two famous deaths were happening, USA Today reported on its editorial page (03/31/05) the case of Barbara Howe, aged 79 and on a ventilator since 1997, suffering from amyotrophic lateral sclerosis (ALS). She has been hospitalized at Massachusetts General Hospital for the past five years at a cost that would probably exceed the total health budgets of some countries. Her advance directive instructed her to be kept alive as long as she could enjoy time with her family. Even though her function is totally gone except for the unclear blink of her one remaining eye, her daughter does not want to let go. The patient’s physicians have gone to court to intervene and stop what appears to be medical torture.
Maybe all this public attention on the medical details of dying will ultimately have a more positive than negative effect. Many Americans seem to believe that dying is optional. Many in the so-called pro-life movement believe that death is the enemy, an attitude that was common in medicine until we faced the reality that we often have the ability to suspend life (or physical existence) indefinitely. Dying and death are of course part of life, and the death rate is still 100 percent … and always will be. One of my ethics professors described America as the most death-denying society that ever existed. Most Americans have been separated from dying and death and so come into this new public spectacle of dying with a great lack of understanding. More people are talking about dying and death and expressing their wishes, hopefully putting these in writing in the form of advance directives.
The San Diego community is fortunate to have some of the nation’s leading physicians in hospice and palliative care. The San Diego Hospice has the largest training program in the United States for physicians receiving board certification in this area. We may have the most mature environment in the United States for appropriate care at the end of life. However, this has gone on quietly, one family at a time. With religious tensions and extreme personal beliefs going public, we may need to become more vocal in allowing patients to live their lives as they wish and allow their lives to end likewise. There is still nothing better than the patient- (and family-) physician relationship and the ethics handed down from Hippocrates, “Above all do no harm.” We will continue to cure sometimes, relieve often, and comfort always. Comfort care is pre-eminent in dying, and its management is now a cornerstone of good medicine.