Palliative Care and Hospice Organizations Collaborate to Advance the Field

The National Coalition for Hospice and Palliative Care: Working together to coordinate, communicate, and collaborate on advocacy, quality, and beyond.

What is the Coalition? Why is it Important?

Welcome to the first blog post from our Coalition. If you have attended a hospice or palliative care conference in the last few years, it is likely that you have heard the proverb, “If you want to go fast, go alone. If you want to go farther, go together.” The National Coalition for Hospice and Palliative Care (also referred to as the Coalition) is a critical mechanism for ensuring that the field goes far. Originally established by four organizations in 2002 to create a foundation for defining quality palliative care, i.e., National Consensus Project, Clinical Practice Guidelines for Quality Palliative Care, the Coalition is now comprised of nine national organizations representing clinicians from the full interdisciplinary team (physicians, nurses, social workers, chaplains, and physician assistants), researchers, and hospice and palliative care programs. The Coalition’s goals focus on four essential elements, the “Four C’s”: Cooperation, Communication, Coordination, and Collaboration.

These nine hospice and palliative care organizations work independently to improve quality of life for seriously ill patients by addressing the needs of their constituencies in areas such as education, advocacy, quality improvement, research, etc. While each has been incredibly effective on its own, the field as a whole faces many challenges:

• Rapid evolution of health care and health policy in the U.S.; 
• Rapid increase in the number of people who would benefit from palliative care and/or hospice services; 
• Rapid proliferation of new interventions/initiatives designed to address the high-need, high-cost populations (some with the patient     and family in mind, some with cost savings in mind), creating much “noise” around the right way to care for these patients; 
• Continued misconceptions about what hospice and palliative care can offer and who is eligible for these services; and 
• Limited resources in our small field.
  

Using the Four C’s, the Coalition helps the field proactively address these challenges by convening representatives monthly from each organization to strategize on key public policy challenges; improve communication to avoid duplication of effort where possible; and share intellectual resources. We work together to respond to legislative and regulatory opportunities, and are structured to nimbly respond to significant opportunities and threats (e.g., the recent misrepresentation of palliative care by a U.S. Senator). However, the most important function of the Coalition is to initiate and strengthen relationships across the field. As a result of the Coalition, members often feel more comfortable reaching out to each other individually as needed to clarify an issue, brainstorm ideas, and collaborate on new initiatives. By finding natural opportunities to work together, we strengthen each other and increase our impact – both within the field and to external audiences.

Our next post will describe the Coalition’s structure and its core activities and accomplishments. In the meantime, check out the Coalition’s new website where you can find more information about the work of our Coalition.

Blog Contributors:

Amy Melnick, MPA
Executive Director, National Coalition for Hospice and Palliative Care

Stacie Sinclair, MPP, LBSW
Senior Policy Manager, Center to Advance Palliative Care

This is the inaugural blog in a series from the National Coalition. 

Impactful Relationships and Hospice

Have you ever thought about how the relationships in your life have affected you? Maybe some meant more than others; or some left an impression that stuck with you…

With growing technological advances, relationships in healthcare can exist among providers and patients without ever setting foot in the same room. Relationships in healthcare have long been viewed as a critical factor to the quality of care provided and nowhere has this been more evident than in the hospice community. The wider medical community is learning that relationships have the ability to affect a person’s physical health along with emotional health. There are plenty of studies that suggest being alone at the end-of-life increases mortality among older adults.  There is data measuring quality in relationships and the affect it has on heart health. These results matter. If there were ever a time to have quality relationships, ones where you and your family felt heard and supported, wouldn’t you want it to be at a time like the end of your life?

For more than four decades, hospice and palliative care interdisciplinary teams have fostered deep relationships with the patients and families they care for, and now this understanding is growing to the broader medical community.  As developed by Dame Cicely Saunders fifty years ago and outlined in the Medicare hospice benefit for 35 years, the team approach to care for dying persons includes a physician, nurse, home health aide, social worker, spiritual care providers, allied therapists, bereavement counselors and volunteers. Hospice has shown how members of the interdisciplinary team work together to care for a patient and provide support to the patient’s family that continues even after their loved one has died. The IDT approach allows these relationships to be built with the patient and family in their home, hospital or care facility.  With a desire to explore just how unique and meaningful these relationships can be, NHPCO directed the annual creative arts contest with relationships in mind.

Guided by only a theme – “Impactful Relationships: The Interactions of Hospice and Palliative Care,” members of hospice and palliative care interdisciplinary teams from all over the US sent in over 70 submissions consisting of photos, blogs and poems. These ‘works of art’ tell a story. They are inspirational and offer an opportunity to explore the lives of people working in hospice, the work they do, and the patients that are near the end of their lives. We invite you take a peek at the winning submissions for “NHPCO’s 2017 Creative Arts Contest” and explore for yourself the ‘impactful relationships’ that exist within hospice and palliative care.

By Elizabeth Schneider
NHPCO

Tragedy in Las Vegas - A Message from Edo Banach

We join a heartbroken nation responding to the tragic shooting in Las Vegas.  While no team members of programs that we have spoken with were killed in the shooting, there are a number of hospice staff who have friends and neighbors who were injured and killed. Our thoughts are with them.  As hospice professionals, we know that grief and loss are a part of life.  But there’s something uniquely tragic about loss that stems from blatant disregard for human dignity.  No matter what our political leanings, religious beliefs or social philosophy, I think we can all agree that there is no place for such senseless violence in our society.  

Communities often lean on the support and expertise that hospice can offer when tragedies involving loss of life occur. We have heard countless stories of hospice bereavement counselors going above and beyond their everyday job duties in times of need - from rushing to a school after a car accident that claimed a young life, to offering grief support to a local business that experienced the unexpected loss of a beloved colleague, to opening its doors for grief support groups that are developed in response to a community’s unique needs.  So far, we know that Nathan Adelson Hospice has set up a hotline for community partners to call if they need help or support. Infinity Hospice Care sent credentialed staff to UMC Trauma Center the night of the shooting and they helped the overwhelmed hospital staff by serving food to keep them going. Community organizations are gathering in Las Vegas today to organize and assess available resources and individuals who can work together to address the many needs that will arise in the coming days. I am certain the Las Vegas hospice community will be going above and beyond to help those who were affected by this horrific tragedy. 

But there is more we can do. If we are ever to move beyond simple “thoughts and prayers,” we are going to have to come together as a country.  And the hospice community is uniquely positioned to help us do that.  Not just by providing grief counseling – which we will most certainly do – but by modeling how even the most vexing, challenging problems can be managed when people come together. By demonstrating how a team is strengthened when it includes a diversity of perspectives.  By embracing a philosophy that is rooted in dignity, respect and compassion.  Indeed, our nation’s leaders could learn a thing or two from the hospice movement.   

In the coming months, I’m going to be talking more about how hospice and palliative care professionals can be leaders in helping America cope with its many challenges.  I hope you all will be a part of that conversation. Until then, thank you for the work that you do every day.

By Edo Banach
President and CEO
NHPCO

Read Past the Headline

Despite an unfortunate and misleading headline that appeared in Politico yesterday, “Hospice in crisis,” the article is actually a thoughtful look at what we as a provider community face in caring for people at the end of life. For those who may have seen this headline in your news tracking or social media feeds, I’m sure you were immediately concerned, as was I. However, I encourage you to read past the headline.

The article explores how demographic, competitive and public policy changes are challenging the hospice industry. The author Joanne Kenen – who NHPCO spoke with for her reporting – is not pointing an accusatory finger towards hospice, but is instead exploring the changing environment in which we must provide care.  (As an aside, it should be noted that Kenen did not write the headline, that was done by editorial staff at Politico.)    

A better headline would have been “Hospices Navigate Changing Environment.”  Unfortunately, crisis sells and our challenges do not.  

While it is true that hospices are challenged by changing demographics and patient needs, the crisis is most acutely felt by patients and their families. As providers, we know that when people wait until they are actively dying to access hospice, our patients and family caregivers are unable to fully utilize and benefit from the wide range of services that we provide.  Those of you on the frontlines know this best.

Part of our job is to innovate while we continue doing what we already do so very well. NHPCO is eager to work with Congress, the Administration and other stakeholders to enact policy changes that allow patients to receive palliative care earlier, expand access to concurrent hospice care, and support the delivery of other services that improve care for individuals with serious and advanced illness near and at the end-of-life.  

In fact, we are supporting legislation that our affiliate the Hospice Action Network is championing on Capitol Hill that would likely help more Americans access quality hospice care in a timelier fashion. If you are not familiar with our two major legislative priorities, the Patient Choice and Quality Care Act and the Rural Access to Hospice Act, I hope you’ll visit  the links to learn more on the HAN website.

We are pleased that Kenen took the time to interview me as part of her research and I trust this conversation will be ongoing.  We had a thorough conversation about the realities of caring for the dying, which we are encouraged could lead to additional reporting on the important work NHPCO is doing on behalf of the hospice community.

Thank you for your continued work towards providing high quality care to an ever increasingly complex population in an evolving health care landscape. I can attest to the amazing work I have seen firsthand from one corner of the country to the other and I am proud of the dedication, compassion and understanding I see among the hospice community to adapt to the world around us.

By Edo Banach

President and CEO

Research Published by American Geriatric Society Suggests People Begin Hospice Too Late

New research published in the current issue of the Journal of the American Geriatrics Society states that individuals who access hospice care often do so too late to fully benefit from this holistic model of care. National Hospice and Palliative Care Organization, the oldest and largest leadership organization working on behalf of hospice and palliative care providers applauds the research and attention it brings to issues involving when to best access hospice care.

A team of researchers from the Yale University School of Medicine looked at hospice enrollment for decedents from a cohort of 754 persons aged 70 and older who were enrolled in a larger longitudinal study.  Of the 562 patients who died during the study, more than 40 percent utilized hospice care in the last year of life; however, the median time spent under the care of hospice was less than two weeks.

Study researchers wrote, "In summary, hospice services appear to be suitably targeted to older persons with the greatest needs at the end of life, although the short duration of hospice suggests that additional strategies are needed to better address the high burden of distressing symptoms and disability at the end of life.

NHPCO’s current Facts and Figures Report indicates that 34.5 percent of patients died or were discharged within seven days of admission. In fact, the report shows that 61.5 percent of patients received care for 29 days or less, which may prevent patients and family caregivers from taking full advantage of the full range of services that the hospice team can offer.

NHPCO stresses that hospice care is best suited for the final months of life, not just the final days.

Hospice is more than pain relief and symptom control. Hospice also provides emotional and spiritual support, training for family caregivers, and bereavement services to family for a year following the death of a loved one under hospice care.

Remarked Edo Banach, president and CEO of National Hospice and Palliative Care Organization, "Hospice and palliative care professionals have long known the importance of earlier access to the high-quality, interdisciplinary care that hospice makes available to those facing life-limiting illness.”

“Helping the public and the broader health care community – particularly physicians caring for patients with a non-cancer diagnosis – understand the many benefits of timely access to hospice care is an ongoing initiative at NHPCO. This study will certainly help raise important awareness and we offer our appreciation to the researches who have shared this important work,” Banach added.

Previous research has found that earlier access to hospice and palliative care services can prevent emergency department visits, hospitalizations, and stays in the intensive care unit – all of which can be distressing for those coping with serious and life-limiting illness.

Additionally, hospice works to help patients stay in the home if possible, which is the place that eight out of ten Americans would prefer to be at the end of life.

Timely access to hospice care can increase quality of life for patients and family caregivers. NHPCO suggests discussions of hospice care should take place earlier in the course of a serious illness, before hospice care might be necessary.

“Individuals must also ask their medical professions about hospice care and whether it’s appropriate and when the best time to think about accessing services should be,” explained Banach. “A question people can ask their physicians is: ‘Would you be surprised if I were to die within six months?’ – if the physician feels that this is a possibility, then a discussion about hospice should begin immediately.”

Resources to help people learn about hospice care are available on NHPCO’s CaringInfo.org website and via information, videos and tools from NHPCO’s public engagement campaign, Moments of Life: Made Possible by Hospice, at momentsoflife.org.

September 11: A Message from Edo Banach

It is hard to believe that it has been 16 years since the tragedy of September 11, 2001. As some of you know, I grew up in New York City and many friends and family were impacted by the tragic events of that day. I’m sure that lots of us have similar stories and memories. Many years later, I have the most vivid memories of how we pulled together as a country after that day. 

I’m further reminded of that as I see how we are pulling together in Texas, Florida and across the nation to deal with natural disasters. It is interesting to see how people of all walks of life can come together during these moments and then retreat back when the imminent danger subsides and memory fades.  

I’m proud to be working with and on behalf of a community that does not retreat—dealing with crisis, often personal crisis, is a part of our collective jobs. I think we have lots to teach the rest of the nation and world about how to stick with it and to continue to help each other get through the rough times that are inevitably thrown our way.  

Thanks for what you do every day.  

Edo

NHPCO Suggestions for Regulatory Relief

In response to a request from the U.S. House of Representatives Ways and Means Committee, the National Hospice and Palliative Care Organization has submitted a series of recommendations (PDF) that would provide regulatory relief to hospice providers. 

The recommendations were developed by the NHPCO regulatory committee and echo concerns raised in NHPCO’s comments to the Centers for Medicare and Medicaid Services regarding the FY 2018 Hospice Wage Index and Payment Rate Update and Hospice Quality Reporting Requirements; Proposed Rule. 

In summary, NHPCO highlighted areas where Congress and CMS could reduce regulatory burden around payment policy, staffing requirements, audits, and data collection and reporting.  NHPCO also called for Congress to enact legislation that would loosen requirements around Face-to-Face, and allow both Rural Health Clinicians and Physician Assistants to serve as the hospice attending physician. 

NHPCO President and CEO Edo Banach wrote in the letter to Congress, “In recent years, hospices have been faced with substantially increased regulatory burdens, based on new regulations and sub-regulatory guidance, changes required by hospice payment reform, additional quality reporting obligations, and increased audit activity. While some of these changes are positive, hospices report that they are facing many regulatory burdens that take valuable staff time away from patients and are not increasing the quality of care provided.”

NHPCO leadership, staff, and members are eager to work with Congress on these issues, as well as other policy changes that will ensure that all Medicare beneficiaries can access the high-quality, compassionate end-of-life care offered by hospice providers across the nation.