And So It Begins...

While I sat yesterday waiting to board my plane to finally kick off my Watson year, I felt compelled to share more about the context of this journey and why I believe it is so important. When I have told people about my upcoming Watson year, I am usually met with one of two emotions. Primarily, I have been on the receiving end of a lot of “Wow, that sounds interesting but…” But isn’t that going to be incredibly depressing? How will you handle being around death for a year? Don’t you want to be a doctor, isn’t that more about saving lives? I am not shocked by these reactions and until these past two years, I probably would have reacted similarly. However, working at Dana Farber for the Wolfe Lab and then going on to plan my Watson project, has thus far showed me that viewing end-of-life or palliative care as merely “depressing” is counterintuitive to what this field is trying to accomplish.

For starters, there is a common misconception that palliative care occurs only at the end of life, making patients fearful of its utilization, almost as if accepting comfort care is equal to admitting defeat. However, palliative interventions can be life-changing for patients with chronic pain issues, regardless of whether they have a terminal diagnosis or are near the end of life. In this way, palliative care is meant to be used by patients who have either life-threatening (terminal) or life-limiting (quality of life is limited) diagnoses. Similarly, hospice care is an intervention used at the end of life, but it is not meant to be a death sentence in the way the American healthcare system has come to understand it. In a recent conversation with one of the experts in the American hospice system and director of the Worldwide Hospice Palliative Care Alliance, Stephen Connor, he explained that American hospices and palliative care units were always meant to be life-affirming. Essentially, these treatment fields are less about dying but rather about providing the comfort and supportive care that enables people to live as well as possible for as long as possible, instead of only for as long as possible. Despite this original mission statement, hospices in America are understood to be a last resort, a place to fear, and a symbol of failure for so many. So, if in theory hospice and palliative care is focused more on living, why has the system of medicine been so misconstrued and under-utilized?

            The answer to this question, like most questions in healthcare, is multifaceted and complex, and one I am only beginning to piece together. But here are some initial discoveries I have made both from my research, conversations with organizations abroad and with doctors here in America:

1. Bureaucracy: The healthcare system is a business in America. Thus, bureaucratic red tape prevents hospice care from being readily utilized and therefore from having the desired effect.  Many insurance providers, including Medicare, require that doctors be able to predict that a patient has 6 months or less to live to qualify for hospice care.  To state it blatantly, there is no money in dying – there is money in extraordinary measures and continued treatment. The lack of a single, integrated health policy surrounding hospice in the US, leaves this decision to the discretion of insurance and the guesswork of doctors to predict when end of life is near. Moreover, it requires doctors and families to be ready to admit that continued life-extending treatment may not be best for the patient.
   

2. Over-treatment: In conversations with many doctors in the palliative and end-of-life field here in the USA, many cite over-treatment by clinical workers as a contributor to poor end-of-life care. This is not at all the fault of individual health care workers, but it seems to be the result of the lens in which clinical workers view treatment. Healthcare workers in America are taught to fix and cure, making death the ultimate antonym of medicine. Entrance into hospice or palliative care becomes equivalent to failure or defeat. Instead, extraordinary measures have become the norm, leaving clinical healthcare workers to fear these so-called “end-of-life care conversations” where hospice or home care could be introduced as a care option.

3. Culture: Underlying all of these reasons is this looming sense of death as terrifying and unnatural, not just within healthcare but society generally. The modernization of medicine and health means people are living longer and there is more medicine can do to intervene and put off death. With this “medical revolution”, death has been made alien; people are dying later but often in the hospital or care facilities, reliant on medicine. A lack of education surrounding and implementation of advanced care planning means families are not speaking to their loved ones about their wishes as often as they should, leaving medical decisions up to designated healthcare proxies. When wishes are not communicated, and there is a means to keep a loved one alive using machines, tubes, and drugs, our ingrained fear of death and the idea of “losing” someone, make it difficult to accept death when it is here. As Dr. Kathryn Mannix describes in her book, With the End in Mind, death is not dissimilar from giving birth in that the human body knows how to do it; however, we have convinced ourselves that we don’t, that we must avoid death at all costs. In doing so, we avoid talking about it, planning for it, and understanding it.

While I in no way think this year will provide me with all the answers as to how to overcome some of these obstacles here at home, I hope that the chance to understand how other countries approach these points of contention will provide frameworks for a way forward.

The reason I believe so strongly that there must be a way forward, although the problems facing this issue are daunting, is because of the second reaction I get from people when explaining this next year. Many people greet my ideas with a sense of understanding. The fact of the matter is death is universal – it happens to us all. Many times, people will explain their personal experiences to me – of their brother, or grandparent, or aunt. They express that they agree that there needs to be a change because it is our family members, our friends, and ultimately ourselves who are looking for ways to die “better”.

As I sat at the airport finishing this post, I am filled with so many emotions – nerves, excitement, sadness, curiosity, and most of all, gratitude from all those who have shared their stories with me, who have taken the time to teach me already, and whose support has buoyed me through this year of planning to this very moment of departure.

But for now, London’s calling! More to come soon…