Music Therapy Helps Hospice Patients and Families

The National Hospice and Palliative Care Organization has released a new video that highlights the use of music therapy in hospice care. “Mr. Gregg: the Life of the Party” follows Robert Gregg, a Seasons Hospice and Palliative Care patient, suffering from memory loss and agitation due to advanced illness. Music therapy has helped restore some of the lighter and more cheerful aspects of Mr. Gregg’s personality and has been a positive addition to his care.

Music therapy was introduced into Mr. Gregg’s care after a hospice aide realized he was responding positively to the songs she would sing to him. Sara Harris, Board Certified Music Therapist at Seasons Hospice and Palliative Care, was brought in to Mr. Gregg’s home to provide music therapy sessions. She offers a reassuring tempo that allows Mr. Gregg to adjust his breathing to sustain both happiness and peace. In the video, Mr. Gregg sings along with Sara, claps his hands, and has a broad smile on his face.   

Jackie Gregg, Mr. Gregg’s wife, was unsure at first how music therapy would help him. But once Sara started playing her guitar, she noticed Mr. Gregg moving his shoulders and toes. He seemed very happy.

Music bridges a gap between their reality and our reality,” says Harris. “And for families who may have not seen their loved ones speak or sing or anything the past few years, it’s just absolutely priceless."

"As a musician, I believe in the power of music to transcend words and connect people,” says NHPCO President and CEO Edo Banach. “Music therapists help provide physical and emotional peace to patients and families at the end of life."

Mr. Gregg’s video is part of the Moments of Life: Made Possible by Hospice public awareness campaign launched by the National Hospice and Palliative Care Organization in 2014. The campaign features stories from hospices and palliative care programs across the United States of patients and families experiencing hospice and palliative care first hand. Moments of Life was created to help people understand that hospice and palliative care help patients and family caregivers live as fully as possible despite serious and life-limiting illness. Visit MomentsOfLife.org to learn more.

 

The Many Reasons That I Celebrate Front-line Caregivers

by Katherine Murray, RN, BSN, CHPCN(C).
Shared courtesy of Life & Death Matters Blog.

October is the month to celebrate personal support workersin several provinces in Canada. In the US, the contributions of hospice aides and certified nursing assistants are celebrated in November.

At Life and Death Matters, we join with health care teams and members of the public across North America to celebrate and give thanks to the incredible people who serve in these caregiving roles. I would like to take a few moments to talk about the many reasons to celebrate front-line health care workers.

I have interviewed hospice aides over the past month as I prepare for an NHPCO webinar series for hospice aides. Several interviews had to be postponed as the hospice aides evacuated people before Hurricane Irma hit Florida, or when wildfires spread in California. Another time the call needed to be rescheduled because the hospice aide was working in a remote area without cell phone reception. In the interviews I repeatedly heard stories of connections between the hospice aide and the person and family, stories of caring, stories about letters written by bereaved family members that expressed gratitude for the personalized support, and the ability of the hospice aide to adapt care to best meet the needs of the person and the family. These examples reinforce for me that front-line caregivers are pillars of support that the person, family, and health care team can depend upon.

I wrote a blog post about a study of the experiences of front-line caregivers in Ireland. I was delighted to hear stories that showcased similar experiences of hospice aides in the USA. Hospice aides, in their rather straightforward manner, shared a few stories and examples of how they work with the person and with the team. For example, I’ve heard repeatedly about a time when a hospice aide shared their concern about a person they were assigned to. How they formulated a report that shared their observations, the questions they asked, and then called the nurse supervisor. In each case, the nurse responded in a short period of time, and followed up on the hospice aide’s concerns by contacting the appropriate member of the team. In one case, the nurse called the physician to report pain and request an increase in pain medication. The nurse supervisor also visited the person when necessary.

"In each story, the hospice aide initiated changes in care,
and then adapted their care to best meet the needs of the person."

These stories and reports of events impressed me.

In the past weeks I have talked with several directors of care and nurse leaders at hospice organizations in California. In each hospice, the hospice aides were invited and contributed to interdisciplinary team meetings, and participated in education. For some hospices, the meetings occurred by teleconference, with members of smaller teams meeting at set times each week. For other hospices, the ENTIRE team gathered in one room, where deaths were reviewed, “what went well” was discussed, thank-you cards were read, cases were reviewed and care plans updated, and attendees were educated in the moment. I was impressed! The hospice aides participated alongside the physician, nurses, social workers, counselors, and therapists. These front-line caregivers are valued for their commitment, their caregiving, and are fully accepted members of the health care team.

Following this meeting I interviewed two hospice aides. In one interview, Terry, who previously worked with oil pipelines as well as other physically demanding jobs, shared with me about coming to hospice later in life. It is her quote that appears at the beginning of this posting,

"Singers sing, painters paint, and I am a hospice aide and I care.
I love it. It is what I do… It is what I have to do."

To all those front-line health care workers, whatever your title, THANK YOU for caring. Thank you for the work you do. You are incredible! Your work is valuable.

Thank you. 

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 Learn more about NHPCO's educational program, the Hospice Aide Webinar Series, taught by Katherine Murray, RN, BSN, CHPCN(C). The series features three webinars offering the first three Wednesdays in November and includes MP4s and resources for your library. This is a cost-effect way to offer professional development created especially for hospice aides.

CMS Recruiting for Hospice Quality HEART Tool Pilot

CMS has contracted with RTI International to develop the Hospice Evaluation & Assessment Reporting Tool (HEART), an expanded item set covering the comprehensive patient assessment for hospice providers.  As part of the HEART development process, RTI will be pilot testing the draft HEART instrument by conducting two sequential pilot tests.  

RTI is currently accepting applications to participate in the pilot test for HEART

The deadline for applications is October 31, 2017.

How to apply to participate in the pilot:

If you are interested in participating, please complete the pilot interest form located in the download section of the HQRP Requirements and Best Practices tab on the HQRP website and email it to hospice@rti.org by October 31, 2017. The project team will contact you to further discuss the pilot project. If you have questions about the pilot, please contact Jennifer Tierney Lyden at 919-541-7447 or at jlyden@rti.org.

Read the complete Hospice Evaluation & Assessment Reporting Tool (HEART) Pilot Project Overview.

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