Quality of Life: 101

What is the ACS CAN QoL Initiative? An initiative to improve the lives of cancer patients by making treatment of pain and other symptoms and coordination of their care standard protocol during treatment

Why Are We Making QoL a Priority? Part of ACS CAN’s core mission is to improve quality of life for cancer patients during and after treatment QoL can defragment the health care system while improving cancer patients’ & survivors’ lives The QoL initiative can take away some of the unnecessary pain, fear & anxiety that many patients feel and will make recovery and survivorship easier We now have the evidence we need to effectively advocate for better patient care

What is “Quality of Life”? Palliative Care Relief from symptoms, pain & stress Team-based care for patient & family Appropriate at any stage & can help patients get better

Any age. Any stage. Palliative Care Palliative Care is initiated at the time of diagnosis, regardless of prognosis, and it is provided alongside disease-directed treatment at any age and any stage of any serious illness. Any age. Any stage.

Palliative Care Appropriate at any age and any stage in a serious illness and can be provided along with curative treatment Teams include physicians, nurses, social workers, chaplains and other specialists who work with a patient’s doctor to provide an extra layer of support Improves QoL for both patient and family Delivers value to people, providers, and systems by improving care quality and efficiency and reducing costs

Palliative Care…What it is Not Palliative care isn’t… Hospice Symptom management that can only be provided when curative treatment has concluded Support provided at the end of life to make a patient comfortable Something that gives doctors the authority to make decisions about ending curative treatment or rationing care

ACS CAN and QoL ACS CAN approaches our work in palliative care in three key areas: Research Investing in research on ways to improve patient quality of life through palliative care (eg. symptom management, care coordination and physician communication skills) Building a Highly Trained Workforce Ensuring sufficient numbers of doctors, nurses and other health professionals are trained to provide high quality palliative care Expanding Access Expanding the availability of high-quality palliative care in hospitals and then extending that care to other community sites where cancer patients are treated

ACS CAN QoL Legislation ACS CAN federal legislation addresses patient barriers to palliative care in three key areas: Expanding Research and Educating the Public The Patient Centered Quality of Life Act (112th Congress) Directs the National Institute of Health to expand research on ways to improve patient quality of life Would create an education campaign that makes people aware of palliative care Building a Highly Trained Workforce Palliative Care, Hospice, Education and Training Act (113th Congress) Would provide funding to medical schools to create curriculum in palliative care, Would establish a fellowship program that would train medical school faculty in palliative care

Recap: What is Palliative Care? Provided at any stage in a serious illness and can help patients get better faster and with greater ease. Tries to provide patients with relief from symptoms, pain, and the stress of a serious illness. Team-based care for the patient and their family members by doctors, nurses & others working together to make decisions.

Recap: Palliative Care…What it is Not Palliative care isn’t… hospice Palliative care isn’t… symptom management that can only be provided when curative treatment has concluded Palliative care isn’t… support provided at the end of life to make a patient comfortable Palliative care isn’t… giving doctors the authority to end curative treatment or ration care

A Look Ahead: QoL Advocacy QoL campaign will be a steady but consistent campaign It is an advocacy campaign as well as an education campaign We need to educate our volunteer structure and use ACS/ACS CAN to help educate and empower patients Federal and state legislation will need bipartisan support to move forward QoL advocacy campaign is an opportunity to work with key stakeholder groups that we don’t typically work with to help move the issue forward