“We don’t beat the Reaper by living longer. We beat the Reaper by living well.” Professor Randy Pausch, who died from pancreatic cancer at age 48, made this declaration in a commencement address shortly after enjoying a remarkable and viral reception to his “Last Lecture” at Carnegie Mellon in 2007. His sage words still resonate today, and, in my view from my role with the American Cancer Society, capture so eloquently the heart and soul of what most patients, survivors, and families facing cancer really want. Sadly, that’s not the case for many patients and survivors who endure untreated pain, breathlessness, fatigue, nausea, depression, and stress as a result of cancer and its treatment. Which got me thinking…what would be that one magic law to boost quality of life and prevent suffering so that our health system delivers truly patient-centered and family-centered care? [more]
“Quality of life” may mean different things at different stages in people’s lives. For some it might mean adequate pain control, for others, it might mean still being able to do the things they are used to and enjoy doing. However someone defines it, we know that “living well” is vitally important to people who are facing serious illness like cancer. So our magic bullet bill would need to start from the fundamental premise that quality of life – addressing physical symptoms and emotional concerns — should be an essential part of the conversation every time a cancer patient in active treatment or survivor being cared for in follow-up sees his or her doctor. But looking at the complexity of cancer treatment and the way the health system works today, quality of life has really been pushed to the back burner at a time when people are more concerned about it than ever.
How lawmakers have dealt with quality of life has also historically been a patchy affair. Many bills have been considered, fragmented by different disease, body part, and professional discipline, yet they all represent symptoms of larger health system issues that haven’t been strategically addressed. Our job in public policy is to try to make sense of it all by developing one cohesive strategy that takes into account what patients, survivors, and their caregivers most need and want.
Applying Professor Pausch’s wisdom, now is the time to dust off the familiar but often forgotten principle of medicine to cure when possible AND provide comfort always. That is what we mean by patient-centered care, and it should not be an either/or proposition as our health system has it today, where you get one or the other but not both together. When we focus exclusively on cure at the expense of comfort, it causes preventable pain and suffering that can also interfere with patients’ ability to complete their cancer treatment. We need the law of the land to change that
Public policy will be an important tool in this health system transformation to promote quality of life as a higher priority. Effective advocacy can engage the public and policymakers in efforts to achieve three key goals by 2020:
- All patients and families will know what patient-centered care is: treatment focused on beating cancer, together with care focused on easing pain and addressing symptoms. They’ll also know when to demand it to support their quality of life;
- All healthcare professionals will have the knowledge and skills to address patient and family needs for patient-centered care; and
- All hospitals and other care settings will be equipped to deliver and support coordinated and patient-centered care services for patients, survivors, and their caregivers.
This vision is actually one significant step closer to becoming reality. Right now, colleagues at the American Cancer Society Cancer Action Network, the Society’s non-partisan advocacy affiliate, are working to build Congressional interest around a new suite of quality of life legislative proposals addressing these three key goals. Building this quality of life movement will require innovative leadership that brings together organizations that deal with all kinds of chronic diseases to help the health system meet the rising and changing needs of our nation’s population – particularly those who are living with serious illness and chronic conditions.
I have never seen a better time than now to advance this cause by creating a “quality of life” movement of patients, survivors, caregivers, and health professionals. It will need to start with an informed population of patients and families who know that they have to demand treatment to ease their pain, symptoms, and stress as an essential part of their cancer care. At the same time, health professionals will need to encourage those conversations at every check-up – remembering to first ask “How are you and how are you feeling?” before diving into discussion about the lab reports and other test results.
That is a critical first step to transforming our health system so it can better treat and care for people by preserving their quality of life while also fighting their disease. Helen Keller said in Optimism (1903), “Although the world is full of suffering, it is also full of the overcoming of it.” With those inspirational words as our backdrop, let’s all join forces in this movement and take action to empower patients and family members and make sure their needs and hopes get heard.
Kirch is director of quality of life and survivorship for the American Cancer Society.