A newspaper story recently caught my eye when it headlined: “Senators Revive Push for End-of-Life-Care Planning.” It reported on new legislation making the rounds in Washington to address care planning for those with advanced illnesses.
You remember “end of life care planning,” don’t you? It was part of the Affordable Care Act debate several years ago, and quickly became translated into death panels where opponents made the argument that the government wanted to help people decide not to receive needed treatment. That was a moment that will live in my memory forever, and it’s not a pleasant memory.
So here we are with this new bill, and a headline that suggests we may be headed down the same path once again. This time, however, I hope we can have a more rational and appropriate discussion about an issue that is rapidly evolving in cancer care, supported by medical evidence and medical professionals, not to mention organizations like the American Cancer Society who believe the time has come to engage our patients, their families and caregivers, and the nation at large in understanding the need for compassion as we care for patients with serious illness, including cancer.
First of all, the bill in question is not just about end of life. It provides the opportunity for patients and their families with advanced illness-such as locally advanced or cancer that has spread to other parts of the body–to meet with a team of health professionals and others-including among them “a chaplain, a minister, or the individual’s personal religious or spiritual advisor”–to discuss their treatment options and more importantly their wishes as to what kind of care they want to receive. It helps all patients with serious disease, not just those at the end of life, plan their care with a better understanding of how that care will impact their lives, and-yes-help them understand what their options may be at the end of their lives should their treatment not be successful, or if their state-of-mind would deteriorate such that they could not make those decisions.
But the question remains: is this bill the best we can achieve? Or do we need to take a look at the larger issue of quality of life and the appropriate role of palliative care, especially for cancer patients? The American Cancer Society believes the world is evolving, and so should we. This bill is a start, but we have a long ways to go.
Research has shown that engaging in these discussions not only helps patients plan their care, it actually prolongs their lives. When research about that was published, I said -and believe today-that if palliative care were a treatment for cancer, it would be widely implemented and utilized. Well, in reality, it is a treatment for cancer, and we should recognize that experts and teams that specialize in palliative care are an emerging valuable and important part of the care landscape.
So if that’s the case, this bill sets us in the right direction. But in conversations with those who are knowledgeable about these issues, I have learned that it doesn’t go far enough. It comes down to the fact that this shouldn’t just become an issue when a disease becomes far advanced. We need to consider making this a part of routine cancer care far earlier, even at the time of diagnosis.
The leaders in the field are adamant that we need to move beyond the end-of-life focus that is so closely associated with the words “palliative care.” This is no longer about hospice, this is no longer about “terminal illness.” This is about life, and living it when faced with serious medical challenges. This is about the quality of that life, about participating, about setting goals and expectations of treatment, and about living a better life under the most difficult of circumstances. This is about our personhood and our humanity. One thing it most certainly is not about is death panels. Palliative care principles apply throughout the cancer continuum, starting from the initial time a patient hears the words, “You have cancer.”
This concept represents a sea-change in thinking by everyone, medical professionals included. To make that happen, the American Cancer Society Cancer Action Network, the advocacy affiliate of the Society, has sponsored several pieces of legislation to fund research, train health professionals, and bring national attention to provide better patient centered care for those with chronic illnesses. Included in these proposals are other approaches to encourage more professionals to become engaged and lead the way to train others about palliative care, and to practice in the field of palliative care. (You can find more information about this legislation on ACS CAN’s website.)
Perhaps the goals of palliative care are best summarized in this brief comment that appears on a short YouTube video that explains our support of palliative care research and legislation:
Palliative care improves quality of life for adults, children and families facing serious illness like cancer by focusing on relief from pain, stress and other symptoms. It is appropriate at any age and any stage and can be provided alongside curative treatment. Palliative care is delivered by doctors, nurses, and other professionals who work together in a team-based and person-centered approach that identifies patient and family needs, explains treatment options, and gives people a voice in realizing their treatment goals.
Our hope is that by better understanding palliative care and its impact on the quality of life of cancer patients, we can make a difficult journey a bit easier. We will need to rely on legislation to provide some much needed support and resources to make that happen. As we evolve our thinking, my hope is that we can expand the concept of quality of life to embrace what it truly is, which is about the “whole person” through the entire course of their illness. It is no longer just end-of-life.
If we can understand and appreciate that distinction, we can serve the millions of cancer patients and survivors with the care and respect they deserve, and not consign them to the fear of political retribution that visited past discussions of this important and crucial issue.