“What would you do with your life if you only had a month to live?”
I have had this conversation with friends before. It usually turns into a joke, where everyone tries to one-up each other with their fantasies of the craziest adventures fathomable. The joke is always based on several illogical assumptions: that we will be in perfect health throughout the month, only to die instantly in our sleep. That we will not be dealing with the pain and suffering of dying a slow death, and that we won’t be under constant surveillance of a medical professional as we slowly lose the ability to function. Let’s face it, those constraints would just take the fun out of the game.
However, to millions of elderly people all over the world, this is a question they eventually have to consider. For them, fragile health limits their choices. Death is a topic that people rarely discuss, especially their own. But the end of life is an inevitable reality, and what was once a lighthearted game becomes a terrifying series of choices.
As fearful as we are of death, many of us are even more fearful of losing our independence. Spending our dying weeks, months, or even years under constant monitoring, unable to perform menial tasks such as getting dressed or using the bathroom on our own, can be a difficult lifestyle to comprehend.
This is where palliative care comes in. While curative care seeks a cure for a specific disease, palliative care is geared towards addressing the symptoms and providing comfort to patients with serious illnesses. Kevin Thomas, a third-year WUSTL student, spent part of a summer working with Pallium India, an organization that provides palliative care to severely ill patients in India. Thomas described the primary goal of Pallium India as “being there for [the patients] and making sure that they’re as comfortable as possible.” Thomas treated dying patients with comforting methods such as music therapy. He was there so dying patients and their families could have somebody to talk to, and he was able to comfort people emotionally and physically.
This holistic approach to treating dying patients can also be found in the United States. BJC Hospice, a branch of BJC Healthcare based in St. Louis, “treats the person, not the disease.” Hospice care is a subset of palliative care specifically for patients who are likely to die in six months or less. Dr. Joan Rosenbaum, an associate medical director and pediatric palliative care specialist at BJC Hospice, said hospice care focuses on more than a patient’s physical symptoms. “Back to the days when hospice was first described, illness was described not just in terms of abnormal physiology and physical symptoms, but the emotional, spiritual, and social parts of what makes up a person,” Rosenbaum said.
While nearly half of all people who die in the United States are treated in hospice care, not everybody who is near death will choose this path. Ultimately, patients must make their own choice between hospice care and curative care. According to Rosenbaum, when working with a dying patient, a doctor’s main focus should be on relief from pain and suffering. They must then pose the inevitable question, “Given what you’re up against, what are you hoping for?”
What is difficult about this question is that it subtly implies that a patient may not get everything they hoped for, may not have a curable disease, or may not survive. Rosenbaum said the family is often “hoping for a miracle, a cure.” When the doctor determines that a cure may not be possible, it is time for the patient and his or her family to make a decision for themselves: how should we make the best of the time we have left?
Many patients will choose curative treatment based on a desire to “go out fighting” and a reluctance to give up. However, death cannot be avoided forever. Sometimes, attempts to prolong life by a few weeks simply create a few weeks extra of pain and suffering. Side effects of chemotherapy, for instance, can be severe. Simply trying to hold on to life can do more harm than good. In his book “Being Mortal: Medicine and What Matters in the End,” surgeon Atul Gawande argues for the need of a shift to palliative care for patients. He says doctors have a lot of trouble determining the physical state of a dying patient and tend to overestimate the amount of time a patient has to live by about a factor of five. Accordingly, the effects of aggressive curative treatment for these patients are unpredictable.
Perhaps the most striking finding is that, along with facing an easier death, people who choose to go into hospice care may actually live longer. In “Being Mortal,” Gawande cites a study showing that lung cancer patients who spoke with a palliative care doctor ended up spending fewer days in the hospital, ceasing chemotherapy earlier, and living 25 percent longer than those who chose curative care. This opens up the possibility that continuing futile medical treatment may actively worsen the body’s condition and that the choice between a longer life and a more comfortable life may be a false dilemma.
Death will come to all of us one way or another. Unfortunately, trying to fight off death for as long as possible can be counteractive. When asked about the future of palliative care, Thomas said, “I don’t think in my lifetime we will come to the point where all diseases are curable. Until that happens, I think palliative care will ultimately grow and will be realized as more comfortable for the patient.” Perhaps it would be beneficial to think of hospice care not as a way of surrendering, but as a way of optimizing the last few months of life to live to the very fullest.