HCRI Members Lobby for Palliative Care at the 2016 ACS CAN Lobby Day

On Tuesday January 19, members from the Harper Cancer Research Institute at Notre Dame, traveled to the Indiana State Capitol for the American Cancer Society Cancer Action Network (ACS CAN) Lobby Day. Advocates from across our state, gathered together to lobby for Senate Bill 272, Improving Quality of Life for Patients.

The purpose is to improve quality and delivery of patient-centered and family-focused care in Indiana by establishing a State advisory council on palliative care and quality of life to identify barriers preventing patients with serious or long-term illness from this care. In addition, they want to establish a palliative care information program ensuring that comprehensive and accurate information about palliative care is available to the public health care providers and facilities.

Lack of understanding about palliative care remains one of the primary barriers preventing access to it. Research commissioned collaboratively by the ACS, the ACS CAN, and the Center to Advance Palliative Care confirmed that patients and caregivers want this kind of integrated care once they understand it and they believe people should be educated about it.

Palliative care is specialized medical care for patients with serious illnesses. It is a team-based approach that provides extra support to relieve pain, symptoms, and stress of serious illness, and can be provided alongside curative treatment. The team is made up of a palliative care physician (who leads the team), a nurse, social worker, patient navigator and sometimes a person with a spiritual role (i.e. chaplain, minister or priest). Once diagnosed, a person with serious illness should have the option to receive palliative care services and use it for as long as needed alongside curative treatments. It helps both the patient and family and is appropriate at any age or any stage of illness. Palliative care is about improving quality of life and treating the person as well as the disease.

Palliative care is not just for cancer patients, but all patients with serious illness. ACS CAN is making this Bill a state legislative priority because improving quality of life for cancer patients during and after treatment is one of the ACS’s main goals. Cancer patients often have pain, and treatment for cancer can leave survivors with permanent side effects.  The goal is to relieve some of the pain, fear and anxiety and make recovery and survivorship easier. The way to make this happen is to give patients palliative care.

Legislation is necessary because it will make clear that the state has interest in fostering the growth of patient-centered and cost-effective care throughout Indiana. By forming a multidisciplinary advisory board within Indiana Department of Health, lawmakers can ensure key stakeholders lead the effort to strengthen this medical specialty for seriously ill patients across the state by identifying roadblocks that patients and providers face. 

Originally published by Jenna Bilinski at harpercancer.nd.edu on January 21, 2016.