Palliative Care Needs Survey – Member Participation Matters!

The 2020 Palliative Care Needs Survey is currently underway. NHPCO member hospices should have received an email invitation on June 19 with the necessary link to complete the 2020 survey, which should take approximately 15 minutes to complete. Your voice matters. If your organization is an NHPCO member hospice and you have not received the email invitation to complete the survey, please reach out to palliativecare@nhpco.org.

Your voice matters and NHPCO looks forward to releasing a report later this year that will demonstrate development and trending since the 2018 survey was conducted. Building on the previous survey will enable NHPCO to further advance its efforts on behalf of community-based palliative care.

In June and July of 2018, NHPCO and the NHPCO Palliative Care Council conducted a palliative care needs survey of its members.  A summary report, available online, was published by NHPCO, Palliative Care Needs Survey Results. This survey informed NHPCO policy and advocacy efforts, supported requests for a Community-Based Palliative Care model, aided in the development of the NHPCO Palliative Care Playbook, and the creation of education resources.

Key findings from the report indicated that 53 percent of respondents were providing palliative care services while an additional 35 percent were considering or were in the process of developing these services. Respondents represented palliative care services in 48 states.

The survey found that the percent of respondents providing palliative care services have matured community-based palliative care programs and over 85,153 seriously ill individuals were served in 2017. While the primary location of services provided was community-based (home, assisted living facility, and long-term care), most of these organizations were providing care in multiple settings, including the hospital and clinic. Over 70 percent of these respondents had served palliative care patients for three or more years. 63 percent served 101 or more patients, with 29 percent of these organizations serving 501 to 5000 patients in 2017.

The survey results provide important information that demonstrates hospice providers are expanding their services to meet the needs of seriously ill individuals and their families, particularly in the community setting. NHPCO and the NHPCO Palliative Care Council are committed to developing, (or partnering to provide) tools, resources, and education to support our members in the provision of palliative care services.

The deadline for completing the 2020 Palliative Care Needs Survey has been extended to July 17, 2020.

Learn about some of NHPCO efforts addressing community-based palliative care.

Hospice Austin’s Faces of Caring

In this Faces of Caring blog post, Melinda Marble, Communications Coordinator at Hospice Austin, shares how her colleagues have been faces of caring for their patients, including those with COVID-19, during this public health emergency.

Hospice Austin RN Sara Templeton holds a patient's hand

One of Hospice Austin’s patients in a nursing facility used to see his daughter every day. He’s elderly, and almost completely deaf. His Hospice Austin nurse, Sara Templeton, said that though he wears a hearing aid, he can only make out some of what you say if you put your mouth to his ear and yell. Seeing his daughter was the highlight of his day, but of course that ended when his facility had to restrict visitors due to COVID-19. 

His daughter would call, but the patient couldn’t hear her. “As the days wore on,” Sara said, “he became more and more withdrawn and was soon just…existing.” Sara wondered how she could help them stay more connected. She brought in a set of high-quality over-the-ear headphones, plugged them into the cell phone, fit them over his ears and called his daughter. 

“When he heard his daughter say, ‘Hi, Daddy!’ his face just lit up,” Sara said. “He could hear her perfectly – every word!” Sara now keeps the headphones in a drawer by his bed, so he can speak with his daughter even when Sara isn’t there.

Sara and our other staff have become the surrogate eyes and ears for loved ones separated from our patients. By necessity, staff has devised new and creative ways to care for patients and their families. Our leadership team and physicians formed a COVID task force before the crisis came to Texas and have been anticipating needs, procuring PPE, setting up online platforms for visits, implementing new regulations, and staying abreast of the constantly changing guidelines from the CDC. Our highest priority is meeting the needs of our patients while keeping our patients, families, and staff safe from the virus.

We have developed a COVID-19 response team trained to exclusively care for patients who have the virus. This allows us to provide the best care tailored to the patients’ needs while preventing potential exposure to other patients. The team is made up of nurses, certified nursing assistants, a social worker and chaplain. They are primarily visiting patients in the home, both in person as needed and virtually. 

Many patients without the virus are preferring virtual rather than in-person visits, either through online video conferencing or phone calls. Chaplain Nettie Reynolds records and sends blessings and prayers on her phone customized for her patients and their families. They already know her voice, and so they can listen to it whenever they need to.

Chaplain Nettie Reynolds records blessings for patients on her phone

“We’re all trying to figure out ways to support our patients right now,” Nettie said. “I can’t take their blood pressure, but I can lower their internal pressure with a blessing. It’s an intervention, and that’s important clinically.”

Of course, our staff is available for in-person visits whenever it’s needed. Thanks to the generosity of the community, we are well-supplied with masks, gloves, face protection and other PPE. 

Nurse Sara Templeton visited a patient recently while wearing all the requisite gear: head covering, goggles, mask, gloves, gown. When the patient saw Sara, she smiled, grabbed her hand and said, “I know that’s your heart under all that garb!”

The Faces of Caring campaign was created for hospice and palliative care professionals to share their experience providing care during the COVID-19 pandemic. If you would like to share your photos and stories from the front lines, please go to nhpco.org/faces-of-caring. 

FAQs on the 2019 National Data Set

NHPCO has opened data collection for the 2019 National Data Set.  This valuable data collection tool is designed for all hospice providers and not just NHPCO members.                   

What is the NDS?

The National Data Set represents a comprehensive compilation of often hard to find, and timely data points on hospice clinical and operations data.  This is instrumental in providing industry insights, supporting advocacy efforts, and providing useful benchmarking data to Hospice providers that aids in refining strategic goals, setting operational targets and staffing levels, and improving care delivery.

Why participate?

The NDS provides information you cannot get from other sources.  All participants receive the NDS Report of the compiled data at no cost!  You can use this information to inform your budget and set benchmarks for your organization.  You will automatically be entered into a raffle for 2 free passes for the July Virtual Conference or 2 free passes for the Virtual Interdisciplinary Conference

What does NHPCO do with the NDS results?

NHPCO uses the NDS report to educate policy makers and advocate for our members.  NHPCO uses information obtained in the NDS to update exclusive member resources (e.g. The NHPCO Staffing Guidelines).

Where do I access the NDS?

You can find information and members can access the survey here: https://www.nhpco.org/nds/ The survey will be available for completion now (6/17/2020) through August 30, 2020.

Can I start and come back to it to complete later?

Yes; however, if you’re coming back to edit your responses, you must use the link provided at the end of your survey or email nds@nhpco.org.  Editing cannot be accessed through DART.

What if I don’t have all the data requested?

You can still participate!  Complete as much of the data collection as possible.

Will the NDS continue in 2020 and beyond?

Yes!  NHPCO is evolving the 2020 NDS to have two tracks: clinical and operational.  Participation will be tied to the new NHPCO Quality Connections program and will allow for benchmarking of safety measures for the first time for hospice providers.  We are also working on standardizing data submission requirements tied to state licensure to minimize the burden of data collection for our members.

Stay tuned to NHPCO for more information on the 2020 evolution of NDS!

Celebrating Pride with Patients

In honor of Pride Month, Tracey Gregory, RN, QAPI/Education Coordinator at Hospice of Western and Central Massachusetts, reflects on some favorite memories of husbands Mr. D. and Mr. R., who both received hospice care. 

Our hospice office, like many others, has a bulletin board full of thank you cards, staff events and patient pictures. Over my seven years with our agency, I have seen the compilation grow and the smiles of our patients and families bring back memories of compassionate care and amazing stories. One of my very favorite photos is of an elderly gay gentleman attending his first Pride parade, a rainbow fedora on his head and a huge smile on his face.

As a young man, he proudly served in the military, earning commendations for his achievements over the years. That came to a sudden end when he was called unexpectedly into his commander’s office. He was told that he was being discharged “due to homosexuality.” Mr D. had not yet identified as a gay man but was told his mannerisms were not in line with the military code. He was at first stunned, as expected, but he then made a call to a family member, with his usual wit, confidently stating, “Guess what? I’m no longer in the service and I’M A HOMOSEXUAL!” 

Soon after, he met the love of his life, Mr. R. They both performed in “off-off-off” Broadway and vaudeville and had a rich 50 years full of love and adventures together. When Mr R. came on our hospice service, he would regale our staff with sometimes bawdy stories of their lives in the theater. Our staff were touched by the level of devoted care Mr. D. gave as he nurtured his dying husband, despite having ill health himself. 

Within a few months of his beloved one passing, Mr. D. also came on our service. In coordinating his care, we attempted to assist him with accessing his military benefits only to find out that there was no record of his service. Not only had he been unfairly discharged because of his presumed sexual orientation, but his years of proud service had been erased and he was denied the right to his well-earned benefits. Sadly, incidents like this are not solitary. Our nearly 3 million LGBTQ+ elders have many similar stories to tell. 

In his last months, Mr. D. expressed his “bucket list” wish: to attend a Pride parade. He shared that he spent most of his life hiding who he truly was and wanted to experience a place where he would free to be himself. So, his hospice nurse, along with LGBTQ+ friends and allies, decked him and themselves in festive rainbow attire and attended the local Pride parade. He had a fabulous time enjoying the festivities and sharing in the celebration. Toward the end, he teared up and shared how he was so moved that after all the years feeling the need to hide his true self, he could feel safe to be seen as a proud gay man and that he could be celebrated!

Mr. D. passed away soon after, less than a year after his cherished husband. Their stories of the good and bad times are still fondly remembered by our team and their love story is truly inspiring. I can just imagine them, reunited again, celebrating and shouting with pride, “I’M A HOMOSEXUAL!”

Transitions LifeCare’s Faces of Caring

In this Faces of Caring blog post, Darcy Dye Bowers, APR, senior public relations and communications manager at Transitions LifeCare, shares how her colleagues have put their faces of caring out in the community during the COVID-19 pandemic.

#COVID19: a hashtag I’d like to remove from my daily life forever; however, as a communications professional who creates social content for an end-of-life organization, this wish will not soon be realized. Enter #hapcFacesOfCaring. I LOVE using this hashtag and reading related stories because the related content shows gratitude, hope, and grit.

Our examples of #hapcFacesOfCaring? Appreciation yard signs. A POP-UP food pantry. A Zoom visit from Reba McEntire. None of these would have happened during “normal” times. 

Early in the pandemic, our provider relations team, frustrated at not being able to visit and provide in-person support to our facility partners, came up with a different way to stay connected: appreciation yard signs that now pepper our eight-county service area. Large health care systems had banners and signs, but many of our local, independent facilities that were on the front lines of COVID-19 outbreaks and media scrutiny weren’t seeing visible signs of support. The image to the right is a collage of just a few of the encounters. Responses? “Amazing!” “Thanks for taking the time to provide this personal touch!”

Our POP-UP Food Pantry shows full circle how a community can come together quickly. Our volunteer services team leader implemented this in no time and here’s how it works: volunteers who can no longer visit patients in their homes are driving food donations to our office two times a week. Nurse aides whose regular hours have been reduced receive the food, clean it, sort it, then package it into kits for patients and their families based on food preferences and needs. They then deliver to patients who are currently not receiving food from other community resources. Thus, we’re keeping people employed and engaged while maintaining a connection with patients and their families.

And Reba? No way would we have had a personal Zoom visit from Reba McEntire if not for COVID-19. Thanks to Musicians On Call and their connection to one of our nurse case managers, more than 100 of us heard Reba’s laugh, saw her smile, and learned her own mother had benefited from hospice care. 

These are just three examples of how my impassioned colleagues have gone the extra mile to care for others. They are wearing #hapcFacesOfCaring every day, in times of pandemic and in normal times. Likely those in your organization are doing the same, and for that we are all grateful.

The Faces of Caring campaign was created for hospice and palliative care professionals to share their experience providing care during the COVID-19 pandemic. If you would like to share your photos and stories from the front lines, please go to www.nhpco.org/faces-of-caring. 

Author Ira Baumgarten Offers Free Grief and Bereavement Resources for Hospice Providers

Ira Baumgarten and his family have had several experiences with death and loss, and the support of hospice helped them process the fear and grief often associated with death so they could be present in their loved ones’ end-of-life journeys. 

As part of this healing process, Ira wrote the book A Night on Buddy’s Bench: An End of Life Story, a picture book designed to help initiate end-of-life conversations that can comfort both the living and the dying. The book and other texts Ira has created explore the beauty and brevity of life and have been used by hospice staff and volunteers nationally and internationally in their work with families and individuals.

In this time where many find themselves separated from formal supports like friends and family, Ira has generously made his resources free on his website, www.anightonbuddysbench.com. The free resources available for download include:

• A Night on Buddy’s Bench – An End of Life Story (audio book)
• A Pilgrim’s Way through Grief – A Guide to A Night on Buddy’s Bench (PDF)
• Spirit Calling (film)
• Hearts Quarantined I & II, mini-books of heart doodle meditations (PDF)

Ira writes, “In this time of social isolation, our ability to hold both our feelings of loss and the preciousness of life is a spiritual calling we’re all facing. My wife and I just experienced that spirit calling. We had to go to Buddy’s Bench and face our grief. My mother-in-law, Ann Bonville Trombly, the illustrator of A Night on Buddy’s Bench, after years of struggling with Parkinson’s died from Covid-19 virus. We were fortunate that we could do a home hospice and she passed away at home and with family. We are very grateful to Hospice and Palliative Association of New York State for honoring Anne by exhibiting her paintings from Buddy’s Bench in their reception area.”

Ira’s work includes collaborations with NHPCO’s fundraising affiliate, the National Hospice Foundation, and the Hospice and Palliative Care Association of New York State. He hopes that hospices across the country can utilize these free resources as an extra source of support during this time when so many are experiencing loss and grief. Ira welcomes hearing about your experience or questions; you can contact him at: irabaumgarten@gmail.com.

The Faces of Caring campaign was created for hospice and palliative care professionals to share their experience providing care during the COVID-19 pandemic. If you would like to share your photos and stories from the front lines, please go to www.nhpco.org/faces-of-caring. 

The images featured in this blog are paintings by Ann Bonville Trombly.