Imagine you've been told you have a serious illness. Perhaps it is cancer. Or heart failure. Or advanced lung disease. Or dementia.
Chances are, you know and love someone (or you are someone) facing a diagnosis like this. Two thirds of Americans over the age of 65 are living with multiple chronic conditions. The number of new cases of cancer is expected to increase by 45 percent between the years 2010 and 2030. The number of Americans living with dementia and Parkinson's disease will also grow exponentially.
Imagine you are facing some difficult changes. Perhaps you have pain. Perhaps you can't walk without running out of breath. Perhaps your treatment is making you so nauseated that you don't want to move. Perhaps you don't want to leave the house because you are worried you can't find your way back.
Chances are, the specialist who just delivered this news is an expert at treating illness. Chances are, she or he has received years of education and training but still may not be an expert at treating you.
Now imagine that there are health care professionals whose job is to ask the question: "How do you want to live?" Imagine these professionals know how to treat your symptoms, are comfortable with asking you your wishes and are experts at helping you define your quality of life. Imagine that they can help you decide what you want to happen if you are one day no longer able to decide for yourself.
You don't have to imagine. These health care professionals are known as palliative care specialists. They are experts in helping you live with serious illness. Palliative care can and should be provided from the day of diagnosis and be offered together with medical interventions.
My own family was lucky enough to benefit from the support of a palliative care nurse when my father faced lung cancer. She got his pain and nausea controlled and taught us how to care for him at home. She inspired me to pursue my own career as a palliative care nurse practitioner.
But there are not enough of us; right now there is only one palliative medicine physician for every 13,000 patients with serious illness, and the research supporting our work is lacking. The science guiding your comfort and well-being should be just as robust as the science guiding your chemotherapy or your blood pressure medications. A bill making its way through Congress is trying to ensure that this happens.
The Palliative Care and Hospice Education and Training Act (PCHETA) authorizes federal funds to train more health professionals in palliative care knowledge and skills. Health care providers of all disciplines can benefit from training programs so that my family's experience can become the rule rather than the exception. Even more importantly, PCHETA authorizes continuing education opportunities for all health care providers. Most people with serious illness will never meet a palliative care specialist. But the providers who treat your disease can and should become better at treating everything that comes with it — better at taking care of the person with the disease.
The bill also increases funding for research, so that when you or your loved one needs palliative care, you know the interventions you receive represent the best we can offer. Less than 1/100 of 1 percent of the budget for the National Institutes of Health focuses on improving quality of life during serious illness.
You can make better health care a reality by contacting your congressional representatives and asking them if they have cosponsored PCHETA. If they have, please thank them. And ask them to bring PCHETA up for a vote. If they have not, share your own story of a loved one who could benefit from palliative care or whose life was changed by a health care provider who paid attention to their quality of life. Tell them what palliative care means to you.
PCHETA makes it more likely that when your life changes due to a new diagnosis, someone will be there to focus on your quality of life. No matter where you live, or what your income is, or how well educated you are.
Kristine Harrington is a palliative care nurse practitioner; her email is firstname.lastname@example.org.