By INDU SPUGNARDI
The Palliative Care and Hospice Education and Training Act, legislation that will help expand access to palliative care, has been reintroduced in the 116th Congress and is quickly gaining widespread bipartisan support. The bill's provisions will establish training and education opportunities to increase the palliative care workforce; fund research to improve clinical practice; and increase awareness of the benefits of palliative care among patients, families and providers.
In the last Congress, Catholic health care and other palliative care advocates made great strides in garnering support for the Palliative Care and Hospice Education and Training Act. The bill passed the U.S. House of Representatives by unanimous consent and had 56 co-sponsors in the Senate. Unfortunately, the Senate bill was still going through the committee process when the 115th Congress ended.
On Jan. 17, the bill's original co-sponsors, Reps. Eliot Engel, D-N.Y., and Tom Reed, R-N.Y., reintroduced H.R. 647 in the House along with Reps. Yvette Clarke, D-N.Y., Buddy Carter, R-Ga., and leaders of the House Committee on Energy and Commerce Frank Pallone Jr., D-N.J., and Greg Walden, R-Ore.
"This bipartisan bill will improve education, training, and research into palliative and hospice care," energy and commerce chairman Pallone said in a press statement. "This important legislation will help ensure that we have the workforce to meet the growing need for quality end-of-life care. I commend my colleagues for their ongoing commitment to improving support and medical care for patients at the end of life."
On July 7, Sens. Tammy Baldwin, D-Wis., and Shelley Moore Capito, R-W.Va., reintroduced the Senate version of the bill, S. 2080, in the Senate along with Sens. Angus King Jr., I-Maine; Cindy Hyde-Smith, R-Miss.; Kyrsten Sinema, D-Ariz.; Kevin Cramer, R-N.D.; Jeanne Shaheen, D-N.H.; and John Hoeven, R-N.D.
Baldwin said in a press statement, "I was raised by my maternal grandparents and later served as my grandmother's primary caregiver as she grew older, so this issue is personal to me, and I want to make a difference for families experiencing serious health concerns. I'm proud to work across party lines and reintroduce the bipartisan Palliative Care and Hospice Education and Training Act with my colleague Sen. Capito. We must do more to grow our health care workforce to safeguard and improve the quality of care for the growing number of patients with serious or life-threatening illnesses."
The Patient Quality of Life Coalition, a group of over 40 organizations representing patients, survivors, family caregivers, health care organizations, physicians, nurses, social workers, chaplains and researchers, is coordinating efforts to secure co-sponsors and help move the bills through the legislative process. CHA, Trinity Health and the Supportive Care Coalition are members of the group and are working to bring the Catholic health ministry's support behind the legislation. When Catholic Health World went to press, the House bill had 258 co-sponsors and the Senate bill had 23 co-sponsors.
On July 19, the United States Conference of Catholic Bishops joined with CHA in a letter to senators in support of the Senate bill. The letter describes the alignment of palliative care with Catholic tradition and values: "Catholics believe that human life is a gift from God that no one may dispose of at will. All persons, regardless of their medical condition, possess inherent dignity and are worthy of respect, love and support. As Pope Francis stated in his 2015 address to the Pontifical Academy for Life assembly on assistance to the elderly and palliative care, 'palliative care is an expression of the truly human attitude of taking care of one another, especially of those who suffer. It is a testimony that the human person is always precious, even if marked by illness and old age.'"
The Catholic Church recognizes that good palliative care, with its focus on improving the quality of life of the patient, is critically important in a culture it views as not adequately supporting the seriously ill and dying. In 2017, the Pontifical Academy for Life began the PALLIFE Project, which sets up an international study group to support the academy in the promotion of palliative care throughout the world. The PALLIFE website notes, "The Pontifical Academy for Life views with deep admiration and gratitude the palliative care movement that has grown up in the medical profession today as an answer to the needs of a class of humanity — the 'dying' — that is clearly fragile and that, without the vigorous spirit of solidarity that inspires the palliative care movement, would all too easily remain subject to the risk of marginalization and exclusion."
In the U.S., the church and the Catholic health care ministry are undertaking several initiatives to promote palliative care including:
- In California, bishops and Catholic health care providers have formed the Whole Person Care Initiative, which helps dioceses and parishes provide people with information on advance directives, palliative care and hospice options. The initiative also includes various parish ministries that can support people at the end stages of their lives.
- CHA is offering workshops to dioceses across the country to help clergy be a resource to parishioners facing the end of life and has developed booklets that explain advance care planning, palliative care and the teachings of the Catholic Church on caring for people at the end of life.
- The Supportive Care Coalition, a national Catholic organization working to advance excellence in palliative care, offers its members educational, ethical and theological resources relative to palliative and end-of-life care, including expert resources on incorporating spirituality into palliative care practice.
The efforts of the ministry and the church around palliative care depend on building a strong palliative care infrastructure, which is what the Palliative Care and Hospice Education and Training Act will help do, noted Lisa Smith, CHA vice president of advocacy and public policy. "We need more trained clinicians and the knowledge base to support the delivery of high-quality palliative care so we can ensure that all who need palliative care can receive it," Smith said.
To learn more about how organizations can support the legislation and about efforts to promote palliative care, visit CHA's advocacy and palliative care pages at chausa.org/advocacy/issues and chausa.org/palliative/palliative-care.