Filmmakers Rob Epstein and Jeffrey Friedman in their Oscar-nominated documentary “End Game” tell an unforgettable story we all need to hear. It demystifies and clarifies issues surrounding the most important decision about life we may ever be asked to make – how do we prepare ourselves to die?
The film, which is up for an Oscar this Sunday in the documentary short subject category, follows five San Francisco families as they progress into the world of palliative care with resilience and courage. It’s a journey that looks familiar to me, because I too was diagnosed with cancer. When you are diagnosed, you can’t help but get lost in the cacophony of information and decisions being thrown at you.
That’s why palliative care is so valuable. It’s specialized medical care that supports a person going through a serious illness. Yes, it helps people who are dying. But, more importantly, it cares for those who are living by helping patients and families better understand their treatment options, how to decide what options are right for them, and make sure that their pain or other problems are properly managed.
The doctors, nurses, social workers, chaplains and others who work to provide palliative care are there to work in concert to create a safe environment for a patient and family to make difficult decisions when in their most vulnerable state.
This support allows a family to be present in the moment and for the patient to live more fully until the final day. It can also help them feel more comfortable facing the end of their life – a deep fear for many. For a family, it can ease feelings of guilt and regret that often come with the death of a loved one, wondering whether the right decisions were made.
In my own experience with cervical cancer, a palliative care team helped me with my nausea, anxiety and social isolation. I was able to understand and approve the decisions that were being made for my treatment, feeling confident that I knew what would happen and what side effects there might be.
By focusing on what mattered most to me, palliative care helped me get through chemotherapy and radiation easier and heal much faster. I am eternally grateful for that support and the strength it provided me.
So, if this is the type of care that anyone with serious illness should have, then why do so few people receive it, let alone hear about it?
First, palliative care services at hospitals weren’t always readily available. In 2000, fewer than 25 percent of hospitals (with 50 beds or more) offered palliative services. Today, more than 75 percent do. In California, the state now requires all managed Medicaid health plans to cover community-based palliative care as an essential health benefit, and other states are following suit.
As our population continues to age and Baby Boomers swell the ranks of retirees, these kinds of medical services will define how well our healthcare system works. There are roughly 6 million Americans currently living with serious illness, and they need community collaborations between hospitals, home-based palliative care providers, health plans and community-based organizations to ensure services are available and that patients and families know to ask for it.
The documentary “End Game” captures this drama and caring in a compassionate and honest way.
The film is an important reminder that by sharing our personal experiences with death and dying, we can share with our communities our needs and expectations. Bringing these decisions and circumstances that everyone must face into conversation will bring us closer together as communities. It will allow us to live more fully, all the way through the end of life.
Palliative care isn’t just about dying. It’s about how we live.
Torrie Fields, MPH, is a cancer survivor and has implemented a home-based palliative care program for Blue Shield of California members that is now available in all 58 counties in the state.