Congress Moves to Improve Advanced Illness Care

The Patient Choice and Quality Care Act was introduced to the House of Representatives on June 7th by Congressman Phil Roe (R-TN) and Congressman Earl Blumenauer (D-OR) and today in the Senate by Senators Mark Warner (D-VA) and Johnny Isakson (R-GA).

NHPCO and HAN strongly support this legislation. This legislation is a step forward for the hospice and palliative communities. The Patient Choice and Quality Care Act of 2017 (H.R. 2797) will give patients and families living with advanced and life-limiting illnesses access to the kind of information and services they need. This bicameral, bipartisan legislation directs the Center for Medicare and Medicaid Innovation to conduct an Advanced Illness Coordination Services demonstration.

This demonstration will support the following:

  • Allow an interdisciplinary team to provide early palliative care and wrap-around, home-based services to individuals with multiple and complex chronic conditions
  • Include at least one face-to-face encounter with a patient, family caregiver or legal guardian to discuss
    • the patient’s typical illness trajectory,
    • help the individual define and articulate goals of care and care preferences
    • Treatment options
  • Strengthen Advance directive portability by encouraging providers from difference states to follow one advance directive

Learn more about the Patient Choice and Quality Care Act and ask your Members of Congress to cosponsor this legislation.

Medicare Patient Access to Hospice Act Introduced!

Earlier this month, Congresswoman Lynn Jenkins (R, KS-2) and Congressman Mike Thompson (D, CA-5) introduced the Medicare Patient Access to Hospice Act (H.R. 1284). In rural and other medically under-served communities, a physician assistant (PA) may be the only healthcare professional in the community. Current Medicare rules do not allow PAs to serve as the hospice attending physician or perform other functions that are otherwise consistent with their scope of practice. Patients who receive their primary care from a PA must give up that provider when they elect hospice care. This can cause significant stress for patients at an already difficult time. H.R. 1284 would correct this problem and allow physician assistants to serve as attending physicians to hospice patients.

NHPCO supports this bipartisan legislation, and we hope you take action! Send an email to your Member of Congress and ask to cosponsor this legislation by clicking the “Take Action” button below!  A template email is provided for you, but we encourage you to personalize it for added impact! 


Hospice Care Linked to Higher Patient QOL & Family Satisfaction

Originally posted on

A study published in the Journal of Clinical Oncology demonstrates that hospice care is associated with better symptom relief, patient-goal attainment, and quality of end-of-life care.

Researchers from Harvard Medical School, Brigham and Women’s Hospital, and University of Pennsylvania set out to determine whether hospice use by patients with cancer is associated with their families’ perceptions of patients’ symptoms, goal attainment, and quality of end-of-life care.Find the study abstract, “Family Perspectives on Hospice Care Experiences of Patients with Cancer,” on the Journal of Clinical Oncology website.Researchers interviewed 2,307 families of deceased patients with advanced lung or colorectal cancer who were enrolled in the Cancer Care Outcomes Research and Surveillance study (a multiregional, prospective, observational study).

In the conclusion, researchers wrote, “Hospice care is associated with better symptom relief, patient-goal attainment, and quality of EOL care. Encouraging earlier and increased hospice enrollment may improve EOL experiences for patients with cancer and their families.”

In an article published by Reuters Health, reporter Lisa Rappaport wrote, “… the results add to a growing body of evidence linking hospice to better quality of life for patients, a greater likelihood of dying in the location of choice, and less bereavement-related distress for caregivers, said Dr. Camilla Zimmermann, a palliative care researcher at the University of Toronto who wasn’t involved in the study.”

Read Rappaport’s article, “Hospice care linked to higher family satisfaction.”

Individuals looking for more information about hospice care, or who need to find a hospice in their area are encouraged to visit the National Hospice and Palliative Care Organization’s informational website,

This Thanksgiving Talk about the Care You Would Want

NHPCO Encourages Americans to Spend Time Talking about Health Care Choices before Facing a Crisis

(Alexandria, Va) –A family is gathered by the bedside of a loved one who has been seriously ill, and now is likely near the end of life. Each member of the family has a different idea of what should be done and what their loved one would have wanted. That’s the point when they realize they should have planned ahead and talked about what they each would want in a medical crisis.

Heartbreaking scenes like this happen far too often.

The National Hospice and Palliative Care Organization is encouraging families to spend time when they may be gathered for the holidays, to talk about the care they would or would not want. This is particularly important if a family is coping with a serious or life-limiting illness of a loved one.

Having discussions about one’s health care wishes is part of advance care planning.

Advance care planning involves making decisions about the care you would want to receive in a medical crisis that might be the result of a serious illness or an unexpected accident.  Advance care planning also involves deciding who will speak for you if you are not able to speak for yourself.

An essential part of advance care planning involves having these important conversations with your loved ones.

Advance care planning also includes:

  • Deciding what types of treatment you would or would not want should you be diagnosed with a life-limiting illness or faced with a serious medical crisis.
  • Sharing your personal values and beliefs with your loved ones.
  • Completing an advance directive to put into writing what types of treatment you would or would not want.
  • Designating a person as your health care power of attorney (sometimes called a health care proxy) to speak for you if you cannot speak for yourself.

“Not only is it important for each of us to clearly make our wishes known but it is one of the most important gifts we can give to our families and loved ones,” said J. Donald Schumacher, NHPCO president and CEO. “During the holiday season, families are often gathered together and that’s the best time to have these caring conversations with one another.”

Added Schumacher, “Hospice and palliative care providers see how difficult it can be for families that have never talked about care choices and are in a crisis situation. Similarly, they see how beneficial it can be when the priorities at life’s end have been discussed and are clearly understood.”

NHPCO’s offers free state-specific advance directive forms and free information to help families talk about the care they would want. Visit


New CMS Memo on Hospice and Part D

Originally posted on

On November 15, 2016, the Centers for Medicare and Medicaid Services issued a new communication and analysis on the interface of Part D and hospice.

The new memorandum on Part D and the interface with hospice is based on the Office of Inspector General report where hospices inappropriately billed for GIP care (published in March 2016).  The report also identified instances where drugs were paid for by Part D, when in many cases they should have been covered under the Part A.On the positive side, CMS reported that there was a 75 percent drop in medications paid by Part D after the hospice election for drugs in the four classes:  – analgesics, anti-nausea, laxatives, and anti-anxiety drugs.  However, the memo outlines concerns for the notification of eligibility process, where hospices are not responsive to Part D sponsors in their requests for recoupment, and there is a lag in information on hospice enrollment to the Part D sponsor.

Read the CMS memorandum.

NHPCO members will find a Regulatory Alert that examines some of the specific points in the new document from CMS.