Tuesday, June 22, 2021

New Hospice and Palliative Care Resource Guide for LGBTQ+ Communities

NHPCO Diversity Advisory Council Resource Promotes High Quality Care

Today, in recognition of Pride Month, the National Hospice and Palliative Care Organization (NHPCO) released a new resource, LGBTQ+ Resource Guide, with content developed by NHPCO’s Diversity Advisory Council (DAC). Available free-of-charge, the guide was released in conjunction with a DAC social media day, where NHPCO’s social media platforms were used to share information about disparities that exist in hospice and palliative care.

The topics covered in the resource guide include LGBTQ+ healthcare disparities, serving LGBTQ+ patients in your community, and strategies for reaching out to LGBTQ+ communities.  

NHPCO President and CEO Edo Banach noted, “NHPCO is committed to helping underserved communities access the person-centered care they deserve. Hospice providers have a history of meeting the unique needs of diverse communities going back to the early days of the AIDS pandemic in the 1980s when compassion, dignity, and care were so desperately needed by those marginalized at the time. With a strong foundation and the support of resources like this LGTBQ+ resource guide, we hope all hospices and palliative care providers will provide the best care possible to LGBTQ+ patients and families.”

The resource guide emphasizes the importance of open communication and allowing patients to self-identify who they are and who is important in their lives.

“That’s what we really want to do when we’re serving our patients, is to show that we respect them, we hear them, we see them just as they are,” said Edie Moran, social worker with Prospero Health in Chicago and member of NHPCO’s Diversity Advisory Council. Moran was featured in a panel discussion about caring for LGBTQ+ people with a serious illness, which was shared on DAC’s social media day.

NHPCO thanks SAGE and Cambia Health Foundation Sojourns Scholar Carey Candrian, PhD for their contributions to the guide.

Download the LGBTQ+ Resource Guide (PDF). 

Additional free resource materials from NHPCO are available at nhpco.org/diversity.


If you need information or support related to caregiving or serious illness care, visit newly updated consumer-focused website, CaringInfo.org.

Friday, June 18, 2021

Measures of Excellence Can Foster a Data-Driven Organization

Measures of Excellence Provides Critical Benchmarking for Your Success
The Measures of Excellence (MOE) is a quarterly data collection tool and dashboard that are important components of NHPCO's Quality Connections program - and for organizations that are NHPCO provider members, this valuable tool is included in membership. MOE tracks operational and clinical data to inform high quality care. The quarterly MOE Dashboard allows organizations to compare themselves to other organizations for benchmarking. Participants will be able to identify performance improvement opportunities and track their performance improvement efforts through the quarterly dashboard. 
Measurement Matters
MOE 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 and useful benchmarking data to hospice providers that aids in developing a quality driven organizational culture, refining strategic goals, setting operational targets and staffing levels, and improving quality of care delivery. 
Quarter 1 Dashboard is Available
For hospice organizations that have participated in the Quarter 1 MOE data collection, live dashboards are now available via your MOE participant portal.
NHPCO and Quality Connections Can Help 
Whether your hospice organization has an established QAPI program or there is room to grow your continuous quality improvement efforts, Quality Connections has that tools you need. By combining key resources with streamlined processes and dashboards, NHPCO is making the right thing to do the easy thing to do. 

Wednesday, June 9, 2021

The Gift of Doulas for Grief

By Arlene Stepputat, MA

Carla’s mom had been diagnosed with COVID but seemed to be doing okay.  She was managing her symptoms, resting comfortably and in regular touch with both of her daughters via text and phone.

In communication with her doctor, she was content to stay in her home.  She really did not want to go to the hospital and the daily reports of overcrowded and understaffed hospitals underscored that decision.  Her most important focus was avoiding the isolation--family was incredibly important. 

Twice a day, in the morning and evening, Carla would stop by her mom’s place to bring meals, visit, and monitor how she was doing.  One evening Carla noticed that her mom was not as well as she had been in the morning.  Her mother felt that she could weather her symptoms and had been in touch with her doctor. They said their “goodnights” as usual.

Arriving with breakfast the following morning, Carla discovered her mom had died during the night.  The shock was unimaginable, and Carla immediately attended to the responsibilities of her mother’s death: she had to call her sister, her grandmother, and the authorities.  All of this fell on her shoulders amidst the numbness and the grief.

COVID had its lethal grip on everything and everyone. Her sister and nephew were stuck across the country, unable to fly. Local family and friends could not gather and comfort one another.  As in families all across the world, no normal grieving process could take place.

Carla was the rock for the family. She orchestrated what she could to celebrate her mother’s life and like many, a zoom memorial had to suffice-- it fell far short of the comfort and rituals that typically help through such difficult times. 

The busyness of Carla’s return to work was a distraction to tamp down the feelings, but grief remained, unattended. When a friend suggested that Carla might want to participate in a unique and free offering through NHPCO’s End of Life Doula Advisory Council, Carla agreed to try. She wasn’t exactly sure what an end-of-life doula was, but she trusted her friend and realized she needed something to assist and support her.

The NHPCO End of Life Doula Council had been focusing on educating hospice members and the public about the unique role of an end-of-life doula.  At their monthly meetings in the Spring of 2020, the Advisory Council watched as COVID created mounting deaths and devastating grief and realized the healthcare and hospice system were overtaxed.  Offering limited grief support was something we could do to help.

Carla reported an immediate personal connection with her doula. She was able to express herself deeply, discovering aspects of her grief she had hidden. So profound was the healing she experienced in these weekly discussions with her doula, she began to recommend the program to others in her circle.

With technology, a phone or zoom call can be offered anywhere in the country. While COVID deaths were the early focus of the news reports, the Council has realized that ANY death that occurred during this time, no matter the cause, has impeded the mourning process for those left behind. Anyone who experienced a death during this time could receive support.

NHPCO was an active partner in assisting the Council to design a limited program, recruit seasoned doulas and begin an outreach campaign to offer the support of 4 free one-hour sessions.  An assessment tool was designed for client feedback.  Doulas also were asked to document what their experience had been with each client they supported.

The pilot program ran from February 1 to April 30 of 2021 and the results were encouraging. Every participant in the pilot completed a questionnaire and all felt the program was valuable and exactly what they needed to begin the healing process at a deeper level.  The doulas also met via zoom to support one another and brainstorm ideas and approaches as well as key referrals. All were grateful to be of service and committed to continuing to serve for an additional 6 months.

With such positive results from the pilot, the NHPCO End of Life Doula Advisory Council is actively recruiting new clients. To learn more about the program specifics and to offer this program as a referral for anyone, please go to nhpco.org/doula-grief-support or email us with questions or comments at EOLDoula@nhpco.org.


Arlene Stepputat, MA, has been working with death and dying most of her life. Retired from hospice work, she is an INELDA- trained death doula and death educator.  She has been an active member of NHPCO for the last 8 years and has served on the End ofLife Doula Advisory Council for the last 3 years. See more at www.dyingingrace.com.