More and more Americans today are living with serious and advanced illnesses such as cancer, heart disease, lung disease or dementia. Navigating the fragmented health care delivery system can be daunting and many patients and families do not receive the information or support they need to evaluate options related to their illness.
Hospice Action Network offers a fact sheet with information on this legislation (PDF).
“Individuals with serious and advanced illness are often faced with difficult, complicated or overwhelming health care decisions,” says Edo Banach, NHPCO President and CEO. “This legislation would provide much-needed support to those patients as they traverse the health care system, and would also ensure that their emotional, spiritual and family needs are met.”
The bipartisan legislation directs the Centers for Medicare and Medicaid Innovation to conduct an Advanced Illness Coordination Services demonstration, which will allow patients with multiple and chronic conditions to access palliative care, pain and symptom relief, psychosocial support, and other wrap-around, home-based services . Additionally, the legislation supports the development of resources to educate Americans about advance care planning, and strengthens advance directive transferability state to state.
“One of my biggest regrets is not making a plan with my mother—who suffered for 11 years with Alzheimer’s, nine of those years she couldn’t speak—for her care in anticipation of her suffering a debilitating disease. Having early conversations on this very difficult topic can help families like mine so that patients can have their wishes known and their voices heard,” said Sen. Mark Warner, whose mother, Marjorie, passed away from Alzheimer’s disease in 2010 at the age of 81. “When faced with a serious illness, we must empower individuals to have the freedom to control how they will live and be taken care of for the rest of their lives. Our bill helps patients get the care that they want, and allows their doctor and providers to better understand the choices they and their loved ones have made for their future.”
“I strongly believe that, when a person is faced with life-threatening illness, having a face-to-face conversation with their doctors, caregivers and religious advisors is crucial to wise decision-making,” said Sen. Isakson. “The Patient Choice and Quality Care Act of 2017 empowers patients to take charge of their own health care by providing them with the opportunity to make more informed choices and the power to have those choices honored. From my own experience with my parents, I understand how difficult these decisions can be, and having a plan helps offer a higher quality of life during a loved one’s last days.”
“As a physician, some of the hardest discussions I’ve ever had were about a patient’s end-of-life wishes. Whether it was with a patient of mine, or someone in my own family, these conversations – while difficult – are so critically important in providing certainty and comfort when caring for a loved one with a serious illness, which is why I’m proud to partner with Rep. Blumenauer to introduce the Patient Choice and Quality Care Act,” said Rep. Roe. “Encouraging patients and their families to have these conversations with their physician helps provide peace of mind and undoubtedly increases the likelihood a patient’s care will be consistent with their wishes.”
“Our health care system fails to support families confronting serious medical decisions. I’ve worked for a decade to make sure patients and their loved ones can work with their doctor to navigate the health care process at the end of life,” said Rep. Earl Blumenauer. “This bipartisan, bicameral legislation builds on the progress we’ve made to deliver patient-centered care, and it gives providers, families, and caregivers the tools they need to face these challenging issues.”
As an organization committed to increasing awareness of advance care planning, NHPCO provides free information and tools to the public. NHPCO’s Caring Info has state-specific advance directive forms and information on advance care planning that can be downloaded from its website www.caringinfo.org/stateaddownload. Each state’s advance directive is legally reviewed on an annual basis and meets each state’s statutory requirements.