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Palliative care initiative needs legislative support

If you have watched, as I have, someone suffer with a serious, chronic illness, you know how challenging it can be. Maybe you have been a patient yourself and worried about how you and your family would cope with treatment. There is fear and anxiety. There can be pain. The expense can be costly and scary. Sometimes a cure is hard to come by.

Currently, Congress is discussing important legislation that I encourage you to learn more about. This legislation will make a difference in how well we, as a society, experience medical conditions and give more health care providers the education they need to help.

Palliative care is treatment by a team of doctors and other health care professionals working together to provide effective treatment of symptoms caused by serious illnesses, such as cancer. The team offers support to the patient and family for common and often debilitating physical symptoms of treatment, such as nausea, pain, fatigue and shortness of breath. The palliative care team focuses on making sure that pain is properly managed and that emotional concerns are identified. Patients and their families report increased satisfaction with their experience of illness and health care costs are lower. Palliative care achieves what we in health care call the triple aim: better care, better experience and lower cost.

Recently, our community was at the very epicenter of the continuing national dialogue on palliative care and the need for a continued focus on patient centered medicine when United States Secretary of Health and Human Services Sylvia Burwell visited Trinity Regional Medical Center. National and local leaders alike understand the value of palliative care.

It sounds like a great idea, but there are barriers that need to be addressed.

The first is the public’s limited understanding of palliative care. Studies indicate that most American adults know nothing about palliative care. In a 2011 American Cancer Society Cancer Action Network and Center to Advance Palliative Care survey, 70 percent of participants reported they were “not at all knowledgeable” about the topic. Additionally, many individuals who have heard of palliative care incorrectly believe it is used when a patient is dying. Instead, palliative care is its own specialty for patients while they live with their condition. It is not hospice, which is a worthy specialty in its own right and shares many of the same techniques. The public needs more education about the benefits of utilizing palliative experts without being afraid when they hear the word “palliative.”

The second issue is access. Palliative care is a relatively new specialty and the number of trained professionals does not meet the demand for service. At present only 54 percent of public hospitals and fewer than 40 percent of community hospitals provide patients access to palliative care. We anticipate the demand will grow both as the public learns about the benefits of palliative care and the population ages. Our goal is to develop a workforce that can meet the needs of those patients.

Congress is considering legislation that would solve these two barriers. It is designed to bridge these gaps through public education efforts, training programs and workplace development.

The good news is that we are already doing an admirable job managing patients’ pain. A report called Achieving Balance in State Pain Policy: A Progress Report Card (CY 2015) issued last week gave Iowa a letter grade of ‘A’ in measuring the quality and balance of these policies. The report demonstrates that we are among the nation’s leaders in state policies that support pain management and patient care. And we can do even more.

I’m asking you to reach out to your legislators and show support for this important legislation. It is called PCHETA for short, which stands for the Palliative Care and Hospice Education and Training Act (H.R. 3119). It’s important that you stay informed as the American Cancer Society Cancer Action Network develops a recommendation for Iowa legislation to encourage more access to palliative care.

The American Cancer Society Cancer Action Network – ACS CAN – works hard to call attention to the nationwide issue of unrelieved pain. This is important because patients often face significant barriers to pain treatment. Pain is also a huge contributor to rising health care costs, which is already a substantial financial burden on the shoulders of individuals and families who are going through treatment.

Let’s make sure our friends and relatives diagnosed with a chronic or life-threatening disease are treated with dignity. To ensure they have access to the type of care that assists them in all stages of life. Show your support for palliative care. Provide health care professionals and educators with the tools we need to support those who turn to us in their time of need, and keep Iowa at the forefront of compassionate care that puts patients’ quality of life at the center of healthcare decisions.

ACS CAN, is the nonprofit, nonpartisan advocacy affiliate of the American Cancer Society, that supports evidence-based policy and legislative solutions designed to eliminate cancer as a major health problem. ACS CAN works to encourage elected officials and candidates to make cancer a top national priority and gives ordinary people extraordinary power to fight cancer with the training and tools they need to make their voices heard. For more information, visit acscan.org.

Liddy Hora is a volunteer with the American Cancer Society Cancer Action Network and health system manager at the American Cancer Society. For more information on ACS CAN volunteering, contact Hora at liddy.hora@cancer.org.