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.

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

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. 

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.

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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.

Survey of Team Attitudes and Relationships – Annual Report Now Available

NHPCO’s Survey of Team Attitudes and Relationships (STAR) is the only staff satisfaction survey designed specifically for the hospice field. Originally developed by researchers at the University of Pennsylvania in collaboration with NHPCO, the STAR is a benefit of membership for NHPCO provider member. 

The 2020 National STAR Report is officially up in NHPCO’s Marketplace! If your hospice administered STAR in 2020, your results are included in this report (de-identified and in aggregate). Provider members that participate in STAR receive the National Report at no charge as part of their participation. 

The STAR National Report groups the question-by-question results within domains so you can easily keep track of which domain the question resides in. Quick reference data visualizations of survey demographics and easy to follow tables of salary data is included.

Highlights from this 2020 National STAR Report:

• 1,169 employees across the US completed the STAR survey for their hospice
• More than half of respondents worked 40+ hours per week, and a majority were full-time employees
• Respondents averaged 5.4 years with their organization
• Majority of respondents were female, and the average age was 46.7 years old

·        Question-by-question results are grouped within the 6 domains so you can quickly refer to each question's corresponding domain

·        Top-two and bottom-two box scores, which group together results for the highest two and lowest two categories of the rating scale (Agree+Strongly Agree and Disagree+Strongly Agree), are provided.

Use the National Report alongside your hospice’s results to assess how your scores compare to all who participated in STAR in 2020. For comprehensive evaluation critical to organizational quality, the STAR National Report is an invaluable tool.

STAR is one of the performance measures tools that are available to providers as a benefit of NHPCO membership.

Available exclusively in the NHPCO Marketplace for NHPCO members only, the cost is $400.

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Fulfilling My Lifelong Dream to Become a Nurse

In observance of Nurses Week, Care Dimensions RN Case Manager Nancy Drago reflects on her passion for nursing and how personal experience drew her to a professional career in hospice. 

As far back as I can remember, I have always wanted to be a nurse. As a child, I admired a close family friend who was a nurse who told me her work was rewarding because every day she had the opportunity to improve patients’ lives by providing quality health care. Recognizing my interest in nursing, she gave me one of her nursing text/workbooks the summer before I entered high school. Every day that summer I read this book and worked on the assignments as best I could independently. I was fascinated about the nursing field and could not wait to become a nurse.

Unfortunately, nursing school was not in my parents’ budget, so after graduating high school, I entered the workforce and later got married and had children. My plan was always to go back to nursing school once my children were older, and in 2014, I graduated from Lawrence Memorial/Regis College of Nursing. I could hardly wait to begin this new and exciting chapter in life that I had dreamed of since I was a child.

I began my nursing career at a small skilled nursing/rehab facility as a floor nurse and then as a charge nurse where I gained much experience caring for patients with various acuity levels, including hospice patients. It was then that I was introduced to and had the pleasure of working with several Care Dimensions team members who provided hospice care for some of our patients.

Learning how hospice helps

I saw how hospice brings comfort to patients and families when curative care is no longer possible. My professional experiences with Care Dimensions led me to hold the highest respect for hospice nursing because of the significant value and quality of life it provides to patients and their families facing end of life. A very personal experience led me to realize that hospice nursing was my true passion.

In March 2018, my husband was diagnosed with a very aggressive form of ALS, which took his life just five months later at the age of 60. I cared for him at home but as his disease progressed, his neurologist recommended hospice. Given my prior professional experience with Care Dimensions, there was no question that this was the only organization I would consider for my husband’s end-of-life care.

I remember the hospice nurse assigned to my husband and how extremely thorough, compassionate, supportive and intuitive she was in determining what would be most helpful for him in the days ahead – services such as massage therapy for his tight and rigid muscles and music therapy, which he enjoyed so very much. Care Dimensions offered my family pre-bereavement support and planning, guidance, and valuable resources during his care, which continued even after his passing. Thanks to the hospice team, my family never felt alone and I did not have to be his nurse 24/7. I could be his wife again knowing that our team of wonderful caregivers were always just a phone call away.

As difficult as my husband’s end-of-life journey was, I will always be grateful for the personal experience I had with Care Dimensions because it made me realize my passion for hospice nursing. It also helped me understand what truly is important to patients and families at end of life, as well as their fears and emotions.

The rewards of hospice nursing

Hospice nursing is one of the most rewarding nursing careers because of its very nature. I consider it an honor to be invited into a patient’s home and explore options to improve their quality of life with support from my interdisciplinary team. Patients and families are often overwhelmed, frightened and inexperienced, but as their nurse, I teach, guide, prepare and empower family members to partner in the care of their loved one at end of life. I am also an advocate who ensures that all members of the health care team are available. It is my priority to ensure that families have all the resources and tools they need to honor their loved one’s goals and wishes for end-of-life care.

It is very rewarding as a nurse to walk with patients and families through their most difficult days and help guide them to a peaceful, comfortable passing. The trust that is established between patient and nurse allows the patient and family to be comfortable sharing their true feelings and being honest about their goals, wishes and fears so that they can be addressed. This important message provided me with peace when I was facing the difficult days of my husband’s end-of- life journey.

I have been working for Care Dimensions for approximately nine months and am thankful and proud to represent this outstanding hospice organization. I have found my niche and am so grateful every day for a new opportunity to make a meaningful difference for my patients and families at such a difficult time in their lives.

One of the most important lessons I have learned as a hospice nurse is that just as every person’s experience with life is different, so is their end-of-life journey. It is important to learn as much as possible about each patient, their family, experiences, special memories, and hobbies/interests, all of which help to understand the patient and what is important to them and their family. This intimate knowledge helps the hospice team develop the best individualized care plan that closely meets the patient’s needs and goals as they journey through end of life.

A favorite memory I have was with a hospice patient who was an accomplished jazz pianist but was no longer able to play his piano because he couldn’t climb the stairs to get to it on the second floor of his home. He would reminisce about playing at various functions and for his family, and how much he missed that because it brought him so much joy.

I asked his family if it was possible to have the piano moved downstairs so that he could play again. I’ll never forget the day I walked into his home for my weekly visit and there he was sitting at his piano just waiting for me to enter and when I did, he began to play a song that he had written just for me. While he played, I could see the joy in his eyes and the smile on his face. He had forgotten about his shortness of breath, inability to walk and the pain that was keeping him from living the life he once lived. This experience brought tears to my eyes. There is no greater gift or reward as a hospice nurse than knowing that you have succeeded at delivering the very best individualized and quality nursing care possible and bringing peace and contentment to a patient at end of life.

Her Last Rodeo

By Erin Collins, BSN RN CHPN

We got the call midweek from a woman who was looking for assistance in supporting her dear friend who was living with chronic illness. She had been visiting this friend for several weeks, listening and helping with small tasks around the house, and going for walks when they felt up to it. Her friend, it seemed, was getting worse now—she knew this dear woman needed more than she could give and had heard about our end-of-life doula service. 

I made an initial visit to assess what was needed for this 52-year-old woman (HL) living with Familial Pulmonary Fibrosis, Bronchial Adenocarcinoma, Emphysema and Interstitial Lung Disease (all hereditary) as well as Rheumatoid Arthritis. She was on a trial with OFEV, but the fibrosis was unresponsive to treatment. I learned that she lived with her 3^rd husband, her high-school sweetheart. He worked 60-hour weeks in construction- leaving HL at home alone for 12 hours a day. She required high-flow oxygen and due to wildfires in our area, was unable to leave the house. Newly acquired pneumonia had her coughing almost incessantly and unable to sleep at night unless she sat completely upright, even with her 4^th course of levaquin. HL was under the palliative care service of the local health system for pain management and was also seeing her pulmonologist—both of these were telehealth visits due to COVID-19. Although it was apparent to me with my hospice nursing background that she would meet criteria, HL made it quite clear that she wasn’t ready to die, didn’t want to talk about hospice and wasn’t ready to go there. Isolated, lonely, and quite ill, what HL needed most was additional support and companionship. An end-of-life doula was a perfect resource.

We began visiting her home atop a long mesa overlooking a beautiful canyon in the high desert, 45 minutes from the largest town, where our doulas all reside. We agreed to weekly 2-3 hour visits, taking the appropriate precautions with masking and distance in the house. We rotated weekly, so HL met each of the 5 doulas on our team, and each brought a unique specialty to the visit. Regardless of the specialty, what we quickly learned was that what she needed most was a listening ear. We had plans and ideas on how to help her get through tasks she wanted to complete—sorting out photos, being creative again, labeling family antiques for her sons. Each week, however, HL quickly began sharing whatever she needed to share—retelling old traumas, venting about friendships, describing her symptoms and frustrations with acquiring needed medications, and entrusting us with the story of her estranged relationship with her oldest son. We listened, and each time that we heard something that fell under the provision of hospice, we gently reminded HL, “I know you aren’t ready, but when you are—this is something hospice can provide.”

During our third visit, HL told me that she was ready to consider hospice, “because you all made it sound not so scary, not such a death sentence.” She wanted to wait to finish one more Rituxan infusion for her RA, but then she would be ready to enroll. Three weeks later, one week shy of that last infusion, pneumonia had worsened in her lungs and her palliative care provider finally made the recommendation that she enroll in hospice immediately. She called me in a bit of a panic, and at the same time knowing she was ready for this step. I offered reassurance and support and planned to be present for her admission visit at home.

Throughout our 6 weeks with HL, her husband was not on the same page. I met him for the first time at her hospice admission visit, where he told me that if she were to stop breathing, he would do “everything I could to save her life.” This arose during a discussion of her advance directive, which I knew she had not yet completed. However, from the relationship we had developed, I knew that she no longer wanted to be resuscitated. I gently encouraged them to complete the form to honor HL’s wishes. Her husband was not ready for this step.

HL was on hospice care for 8 days. Seven of those days were in the inpatient unit, where she was given around the clock care and a more appropriate level of symptom management than she had at home. I had the great honor to be able to visit with her in the inpatient unit, where she expressed her gratitude for our relationship. HL knew that if we had not become involved in her care, she would have ended up back in the ICU and would have died there. We were able to talk about hospice in a way that didn’t mean death to her, even though the hospice admission is exactly what allowed her to become comfortable and relaxed and to die in a more peaceful manner. Her trust in our doulas evolved into her husband’s trust of our doulas which in turn allowed him to trust hospice and to trust the process of her natural death.

The most profound experience for HL occurred during my visit to her at the hospice house-- her estranged son called on the phone. HL was beside herself, knowing that the out-of-state number was him. I offered to step out of the room, but she insisted I stay and hold her hand throughout the conversation. After they hung up, she felt as if a miracle of healing had just happened for her, and that part of the miracle was having her doula in the room at the exact time of the call. We had been there to hear the story every week for the 6 weeks prior to her hospice admission. Although this healing could have happened with the support of hospice, it wouldn’t have happened during her short length of stay.

HL was a championship barrel racer and rodeo belt buckle designer. A week before her death, her last buckle design arrived: for her husband. He wore it to the hospice house and we let her know he wouldn’t take it off while he was there. The night of her death, I dreamt of her racing around barrels in the clouds. She certainly rounded barrels in her last year of life; it was our honor to bridge the gap between the barrel race and hospice care.

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Erin Collins, BSN RN CHPN is a NEDA-proficient End-of-Life Doula, member of the NHPCO End-of-life DoulaCouncil and the co-director of The Peaceful Presence Project in Bend, OR.

Optum Continues Support of NHPCO as a Strategic Partner

Optum is a Diamond Level Strategic Partner and Gold Level Sponsor of Quality Connections

The National Hospice and Palliative Care Organization (NHPCO) proudly recognizes Optum Hospice Pharmacy Services (Optum) as a Diamond Level Strategic Partner. Through this generous commitment, Optum will play a valuable role in support of NHPCO’s efforts to lead person- and family-centered care in the U.S.  

Optum further demonstrates its commitment to high-quality hospice care as a Gold Level Sponsor of NHPCO’s Quality Connections program. Quality Connections was developed and launched in January 2021 to enhance the knowledge base, skills, and competency of hospice and palliative care staff through education, tools, resources, and opportunities for engagement and interaction among hospice and palliative care professionals.

Optum has been a long-time supporter of NHPCO’s professional development activities, most notably as the sole sponsor of the 2020 summer Virtual Conference that focused on quality. This virtual conference was seen in all 50 states last July.

“Through its generous support, Optum continues to work with NHPCO on efforts to raise the bar for hospice and palliative care providers and professionals with a focus on innovation, access, and quality,” said NHPCO President and CEO Edo Banach. “Ultimately, support of our mission and the membership is all about ensuring the highest standard of care for patients and families, and excellence among the provider community.”

“We're excited to expand our role in supporting NHPCO and its ongoing commitment to the hospice and palliative care community,” said Jason Kimbrel, PharmD, BCPS – Vice President, Optum Hospice Pharmacy Services. “The importance of the Quality Connections program aligns with Optum's initiatives to support organizations that showcase high-quality, person centered care which leads to overall service excellence within the industry.”

For over 25 years Optum Hospice Pharmacy Services has been empowering hospice care through a flexible, forward-thinking approach by providing industry leading expertise in helping providers control costs, improve technology, and deliver exceptional service so they can put their energy where it matters most — with their patients.

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