A Letter to Grief

By Emily Marge, MPS, NHPCO Veterans Services Specialist

Dear Grief,

These past two years, many Americans and citizens worldwide experienced loss, a new sense of purpose, a feeling of being stuck in a repeating time loop, and much more I cannot express into this blog. This pandemic may still seem like it will never end, with no end in sight; however, we can truly overcome this by recognizing the grief we experienced. 

We all know someone or ourselves experienced losing a loved one due to COVID-19 complications, natural causes, life-limiting illness, or suicide. Our world sometimes feels like we have nothing in common. If anything, I've learned from these past two years is that we all have something in common: grief. 

Like many before August, my grief was grieving missed birthdays, hugs from my parents, going abroad, and meeting up with friends who live far away. August was one of the most challenging times of my life, making sure I was doing okay and that the people I work with and for were doing okay. When the news came of my uncle passing, it felt like my world became dark. The curtains closed on all my happy memories with him, locked behind the window; I could see it but could not recognize it. Nevertheless, I had work to do and could not open that curtain to see happiness. In my job, every day, I hear stories of Veterans having a peaceful ending on this earth, comforted by loved ones, being honored for their service and hospice staff beside them, guiding them to the end. Part of me was angry that my uncle will never experience this ending. 

Since I started working with an organization that represents so many wonderful hospice and palliative care organizations, it had me think about my family’s future. What do I want my loved ones to experience if they choose hospice care? Based on my duties at work, I knew if my uncle did pass away on hospice, I knew I wanted him to have a sendoff; remembering his time of service in the military, he took great pride. My uncle was a Veteran of the United States Air Force, and he was the main reason I wanted to dedicate my life to helping Veterans and being a better person and friend. It wasn't an easy relationship with him living across the country. However, these past eight years of us talking about life and him supporting me meant everything. A month after his passing, I was still grieving. Some days I could not get out of bed or focus on work. I was sad, angry, full of these weird emotions that I'd never experienced when other loved ones of mine passed. Grieving is a strange, bizarre feeling. However, it brought a certain comfort that I was not alone. 

When my mom told me my uncle passed away from suicide, I was utterly heartbroken that this could've happened. My uncle felt helpless, his illness was consuming him, and it was too much to handle. I spiraled into these thoughts of how could I not see it? I've attended these Veteran suicide prevention video pieces of training and shared the Veterans crisis line number, but it was too late. I blame myself for not doing something. When I grieve his loss, I'm also mourning the actions I should've taken, asking myself all the maybes and what if's. However, after talking with some great people who experienced the same loss I've had, I'm slowly accepting it was not my fault, and I could not go back in time and fix it. 

I did not get the chance to attend my uncle's service due to COVID, which was the most challenging part for me; it still feels like I could not close this chapter of us. Finding ways to honor and hold a service for him in my heart is what I want to share. I'm sure someone is grieving. No matter if it's a human or a pet, it still hurts.  

Here are some ways I will be honoring my loved one who passed away in the pandemic.

• Honor my uncle by continuing the work I'm doing to make sure our hospices have the right tools to care for Veterans at the end of life. 
• Eat a bunch of NY take-out staples that he could not get since he lived in Washington State and talk with my sister over the food of our memories of him.
• Be a good friend and think about others. Even if it's getting them their favorite milkshake – like my uncle did for one of his friends in need. It could make them feel over the moon during tough times. 
• Always take a risk, even if it feels wrong. You might regret it if you don't. 
• Just be present. 

Everyone has their way of healing through grief, and it will always be around us. However, I hope that me breaking the silence on what happened to my family and myself might help you with yours. 

In loving memory of the many things we grieve,

Emily


Are you a Veteran in crisis or concerned about one? Connect with the Veterans Crisis Line to reaching caring, qualified responders with the Department of Veterans Affairs. Free, confidential support is available 24/7. Call 800-273-8255 and press 1 or chat online at https://www.veteranscrisisline.net/.

December Podcast - the cookie recipe

In the December 7 podcast from NHPCO, Judi Lund Person and Jon Radulovic spoke with special guest Kimberly Skehan, Director of Compliance, Regulatory & Quality at SimiTree Healthcare Consulting about the CY22 Home Health final rule. The rule included hospice provisions on survey reform and enforcement remedies. 

Before launching into the discussion, Judi mentioned a favorite holiday activity was backing traditional cookies.  Judi wanted to share her recipe with podcast listeners and those who enjoy a good holiday cookie!  

Chocolate Toffee Cookie Crunch Bars

Cookie Base:

2 c. finely crushed vanilla wafers (50 wafers)

¼ c. firmly packed brown sugar

1/3 c. butter, melted

Toffee Layer:

½ c. butter

½ c. firmly packed brown sugar

1 – 6 oz. package (1 c.) Nestle Toll House Semi-Sweet Chocolate Chips 

½ c. finely chopped almonds

(previously toasted)

Cookie Base:  Preheat oven to 350° F.  In bowl, combine crumbs, brown sugar and butter; mix well.  Press into a 13 x 9 baking pan.

Bake at 350° Time:  8 minutes

Toffee Layer:  In medium saucepan, combine butter and brown sugar.  Cook over moderate heat, stirring constantly until mixture comes to a boil.  Boil for 1 minute;  pour immediately over baked base.

Bake at 350°. Time:  10 minutes

Let stand 2 minutes; sprinkle chocolate chips on top.  Let stand 2-3 minutes until chips are shiny and soft;  spread evenly.  Sprinkle with chopped nuts.  Chill until set (overnight).  Break into irregular pieces.

Thank you, Judi.  And Happy Holidays from NHPCO!

Feelings of Grief May be Magnified During the Holidays

The holidays are often thought of as joyful time of the year, filled with the sights and sounds of seasonal cheer. Yet for people struggling with the death of a family member or other loved one, the holidays can be a difficult time.

The season may be full of reminders of the loss in our lives. And it is not just recent losses. During the holidays, feelings of grief can seem fresh, even if a loved one died years ago.

The pain of grief can seem even greater because of the effects of the COVID-19 pandemic. For almost two years, families have not been able to gather freely with others, many traditional holiday events were canceled, and there continues to be concerns about traveling and safety of COVID-19 exposure.

At a time of year when many people feel compelled to follow holiday traditions, it can be important to give yourself permission to do something different, particularly if you are grieving. Some people find it comforting to be with family and friends, emphasizing the familiar. Others may wish to avoid old traditions that might emphasize the loss and to try something new.

Hospice professionals help families cope with loss throughout the year. The National Hospice and Palliative Care Organization (NHPCO) offers the following additional suggestions for coping with grief during the holidays:

·         Plan for the approaching holidays. Recognize that the holidays might be a difficult time for you. The stress may affect you emotionally, mentally, and physically. This is a normal reaction. Be prepared and gentle with yourself.

·         Recognize that the holidays will not be the same. Expecting everything to seem the same might lead to disappointment. Doing things differently acknowledges the change in your life but still offers continuity with the past.

·         Be careful not to isolate yourself. It is important to take quiet, reflective time for yourself but also allow yourself the support offered from friends and family. COVID-19 might prevent you from being together in person, but telephone, Zoom, or Skype calls can be a way to stay in touch.

·         The holidays may affect other family members. Talk over your plans and share your feelings. Respect others’ choices and needs.

·         Avoid additional stress. Decide what you really want to do over the holiday season and give yourself permission to avoid things you don’t want to do.

·         Be willing to listen to a friend who is grieving. Active listening from friends and family is an important step to helping some cope with grief and heal. And never tell someone that they should get “over it;” instead, give the person hope that, eventually, he or she will enjoy the holidays again.

·         Follow up after the holidays to check in. Given the activity of the season, some people may make it through the holidays without any concerns, but they might find the post-holiday period to be more difficult. Checking in after the holidays with friends who are grieving to see how they are doing is helpful.

NHPCO’s CaringInfo.org website offers more information about coping with grief and loss. Additionally, your local hospice can be a source of information to help you or a loved one cope with grief and loss or to find resources in your community. NHPCO’s Find a Provider tool can help you find a hospice in your area.

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Jon Radulovic has been working on communications for NHPCO since 2003 and for eight years prior to that he was was Hospice Foundation of America.

 

From Tears to Smiles to Peace: Local Woman Reflects Upon the Difference Rainbow Staff Made for Her Dad

When Bill Bilgen arrived at the Rainbow Hospice Care Inpatient Center in January 2018, his daughter Jan felt content and an overwhelming sense of relief. It was just 24 hours earlier she found herself scrambling to find a new place for her dad to go.

Bill was staying in the hospital after suffering from aspiration pneumonia when Jan received some unsettling news. Her dad needed more care than his current skilled nursing facility could provide with managing his symptoms related to his cancer, COPD, and difficulty swallowing.

“We were devastated, all alone in the hospital and not being able to take him ‘home’ where he had been living for three years and only 30 seconds from my back door,” said Jan Bilgen. “It felt like a tsunami.”

Now faced with the idea that her dad had little time left, months or even days, a hospital social worker urged Jan and her family to consider hospice and gave her a list of potential places. Jan decided to start with a facility that she didn’t know anything about. A place on her list called “Rainbow IPC.” She reached out to set up a visit for that same day.

As Jan made her way through the front doors, she was drawn in by the comforting atmosphere and the friendly staff.

“I walked in and felt the warmth and feel of not being in a hospital,” Bilgen said. “‘How had I never known this was here?’”

Even though Jan and her family were half an hour away and Bill was in new and unfamiliar surroundings, they now felt confident that he was in great hands.

“We knew how wonderfully my dad was being watched over and cared for and could call any time,” Bilgen said. “Every time I left, I knew that if he passed before I returned, he felt like he was at home and loved.”

Jan got to witness the compassionate care and attention her dad received firsthand. Bill loved music and one of the nurses who cared for him did, too. When they got him ready for bed, they would sing together.

“One time I was lucky enough to be there,” Bilgen said. “There was no sadness or pain as we sang and tucked him in. I laughed leaving the IPC hearing his voice, and drove the entire way home with a smile on my face.”

Perhaps most importantly, Rainbow helped Jan and the Bilgen family create more meaningful memories with Bill during his time at the IPC. The staff organized a date night for Bill and his wife in the IPC family room. They cooked a special romantic Valentine’s Day meal for the high school sweethearts. The ambiance was then complete with beautiful china, soft lighting, and background music. Jan’s husband Jay also helped arranged for Bill to surprise his bride of 67 years with a dazzling arrangement of flowers.

One memory that Jan will treasure forever is when the staff called the family and told them that Bill had taken a turn for the worse and didn’t have much time left, and they should come to say their goodbyes.

“Everyone was able to see my dad the day before he passed,” Bilgen said. “It was a gift to us all that I know most people don’t get. I stayed and talked to my dad into the wee hours, played his favorite music, and told him we would all be okay but would miss him terribly. As sad as those hours were, I wouldn’t trade them for the world.”

Bill passed away at the IPC on April 21, 2018, a week after his 91st birthday.

Now almost four years since her dad’s stay at Rainbow, Jan and her family still remember the great experience her dad had with Rainbow Hospice Care and are happy the inpatient center became a second home for Bill.

“The IPC staff makes special memories with families,” Bilgen said. “I thought they would be all sad because my dad was dying, but I have significantly more good memories. They helped us be us and be in the moment. They made it okay to laugh and cry. They helped not just my dad’s physical needs but our emotional and spiritual needs, as well. They did that with great grace, authentic care, and without any judgment or pressure. They helped us find our way to a life without my dad alive in it.”

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Submitted by Kenyon Kemnitz, Marketing and Communications Manager, Rainbow Hospice Care in Jefferson, WI.  

Are End-of-Life Doulas for Us?

By Marina McGough

A death positive movement is sweeping across the country and with it, there has been much buzz about the End-of-life Doula.  The name is not exactly self-explanatory: doulas are more well known as birth companions. End-of-life doulas are non-medical support persons assisting individuals with their end-of-life journey, with “the labor of dying”, as Barbara Karnes, RN, says. 

In order for healthcare professionals-- especially those in hospice and palliative care-- to fully embrace this role in their scope of practice, it’s important to have an understanding of the doula’s specific skill set and areas of expertise.  In the numerous presentations that have been provided by the NHPCO’s End-of-life Doula Advisory Council, there is a recurring theme in the questions and comments we receive: “How does this role differ from a hospice volunteer?” or “Our volunteers and team already do that.”

As the National Director of Volunteer Services for a hospice agency that trains and incorporates volunteer end-of-life doulas into our team, I would like to distinguish between the two roles as seen in our organization.  We began laying the foundation for our program in 2017 by first enrolling in a training program and then creating our own with the expertise of an already established End-of-life Doula training company.  We were able to launch our End-of-life Doula program in 2018 with a pilot program selecting existing volunteers we felt were ready for the additional responsibilities and were eager to expand the way they served our agency.  We then extended this program to all of our agency locations across the country.  Our goal for adopting an End-of-life Doula Program was simple: to strengthen our volunteer department, provide continuity of care from pre-hospice to post death, to create better patient and family satisfaction, and provide innovative high-quality hospice care for those we serve.

What are those additional responsibilities for our volunteer doulas?  Our doulas learn more about the interdisciplinary team and how to bridge communication among them. In our training program, volunteers learn doula skills such as mindfulness, presence, legacy work/life review, after death support and how to have difficult conversations. Although many volunteers offer these skills as well, I have seen the increased expertise and skill level of a trained End-of-life Doula.  I greatly value hospice volunteers and they are “experts” as well.  Volunteers are an essential member of the hospice team: They provide much needed companionship to lonely patients, facilitate special activities like painting, going fishing, or something as simple as going outside to enjoy the sunshine, and sit at the bedside of the dying. What better way to honor them than to provide them with the opportunity to grow and advance their skills.  I believe every bedside hospice volunteer might aspire to be an End-of-life Doula if given the opportunity to participate in a training.  After completing her first doula workshop, April in New Jersey expressed her observation,

 “I loved that the training was very experiential. I did not know what to expect and was prepared to have a typical classroom experience. But we learn better and faster when our mind, body, and soul are totally immersed and experience things at a cellular level. As I learned more about being a doula, I also gained a better understanding of who I was, what I needed to work on, and what strengths I have to fulfill my volunteer doula role.”

Establishing an End-of-life Doula Volunteer Program can be a daunting task for some organizations. You don’t have to build a program or a training to incorporate this discipline for your clients.  There are many End-of-life Doulas who provide services independently.  Make yourself aware of all the resources in your community.  Just as your organization may recommend external agencies to assist clients who need additional services, look to End-of-life Doulas as a community resource as well.  As palliative care and hospice professionals let’s be a part of the death positive movement, collaborate with end-of-life doulas and transform end-of-life care for our patients-- for the better.

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Marina McGough is the current Chair of the NHPCO End-of-life Doula Council and the National Director of Volunteer Services at Ascend Hospice. Marina has over 20 years’ experience in Volunteer Management and has worked in hospice for the past 14 years.  She completed her training as an end-of-life doula in 2017.  Following her training, she worked in conjunction with Quality of Life Care to establish a volunteer end-of-life doula program at Ascend Hospice in all of their agencies located across the United States.  She is a current member of NEDA, The National End-of-life Doula Alliance.

 

Moving the Quality Needle Realistically

Are you familiar with the starfish story? It is about a young man who is walking on a beach onto which thousands of starfish have been washed ashore. He begins to pick up and gently return each starfish back into the ocean. An older man on the beach approaches the young man and asks him why he is bothering to return the starfish to the sea as there are so many and it will not make a difference. The young man holds out a starfish in his hand and tells the older man, “It makes a difference to this one.”

So, what is the moral of this story as it applies to quality? The young man celebrated each starfish that he returned to the sea as a win regardless of the time and effort applied to reach his goal. The same is true in quality; small wins in moving the quality needle forward are important and should be applauded by everyone in an organization.

As quality leaders, we often get bogged down in the numbers. By how much did we improve satisfaction? Can we reduce waste by this much by this time? It’s the nature of the job – quantifying a problem that we see and figuring out how to improve that problem as much as we can. However, it’s not why we do what we do. We work in healthcare. The nature of the job is to provide care to patients and families during their most vulnerable moments.

At some point, we all likely made the decision to get into the field because we wanted to make an impact on people. As we all know, there are roles where this impact is more apparent than others. If you are a clinician, your impact may be obvious. But the further you get away from direct patient care, the easier it is to forget why we do what we do. This is important to keep in the front of our minds as we lead QI projects. In the chase for improving numbers, we must remember that the numbers reflect something much more important – a better experience for one additional patient and their family.

While we would ideally all love to reach the goals we set during the time frame we set, that is not always going to happen. But if we improve even by 1%, that 1% reflects an actual person. As QI leaders we will always be tasked with providing the biggest impact possible, and we should. However, in the search for making large changes, we must take the time to celebrate positive change. As the person responsible for leading the charge to sweeping organizational change, this will help accomplish two things: 1) reflect to your organization the progress that you have made and continue momentum, and 2) remind us our work, whether we reach out goals immediately or not, impacts real people.

So, as we continue down our QI journeys, let’s try to keep the young man with the starfish as inspiration. While we hope to be perfect to all patients, we may not get there for all. But like the young man said, “It makes a difference to this one.”

By Jennifer Kennedy, Senior Director, Quality & Regulatory, NHPCO, and Jon Nicolla, President, Prepped Health

End-of-Life Doula's - A quick overview of an EOLD's code of ethics

Arza Goldstein, a member of NHPCO's End-of-Life Doula Advisory Council shares a video blog message about the code of ethics for EOL Doulas. 

The Doula Council has been working to help hospice organizations understand the many ways that EOL Doulas support the mission of the Interdisciplinary Organization and add to the skills of the team.

Learn more about the work of End-of-Life Doulas on the NHPCO EOL Doula Council web page.

Be sure to take some time to learn about the COVID-19 Grief Support Project, a pilot program created by the EOL Doula Council to offer support to someone grieving a loss during the global pandemic. 

You May Contribute a Verse

By Jessica Curd, LCSW

My first experience with an end-of-life doula was somewhat unexpected. I recall that some within our organization had been skeptical of doulas, questioning the term or preferring “vigil volunteer.” I remember some asking why doulas were needed, specifically, when any of us can provide comforting care and supportive listening to our patients. What I can say now, after my first experience with a doula, is how powerful, helpful and meaningful the doula was in everything we did.

Mary Jo had just joined our local hospice organization as a doula and she was a sweet and insightful older lady with long, nimble fingers and a warm, gentle smile. She had a wisdom and strength in her softness, and I could tell she was always pondering, always careful with her words and deeds. She had already been a hospice volunteer for five years prior to joining us and she jumped right in with her first case, which happened to be one that was also new to me. Everything about Mary Jo’s presence and involvement was helpful. 

As a hospice social worker, I often find myself wearing multiple hats: sometimes I help with community resources or advance directives; sometimes I assess safety and ethical issues; but most often I provide a listening ear, a helping hand and an open heart. Although there is something unique about the social worker role, there is always overlap. Sometimes the chaplain or nurse provides social support, and sometimes I help with a prayer or listening to talk about medications. What stands out to me the most, though, is the importance of teamwork, and recognizing that the patient and the family are our focus. As long as we are staying within the ethical boundaries of our professions, as long as we are being diligent and acting with integrity, the team is available as a set of resources available to the patient and family. They can pick and choose and hopefully one of us is present in the right place and at the right time and it just works out as it is meant to. We all have a role, and we all contribute. I would say this is true for our volunteers and volunteer doulas as well. Though sometimes misunderstood, the doulas provide wonderful comfort and extra care for our patients.

The hospice social worker role is not without its limitations. Many times, I serve 30-65 patients at one time, sometimes in a rapid turnover from admission to death. Our agency increased expectations and our desire is to visit patients and families in the last 7 days of the patient’s life. On top of the everyday obligations of the social worker, I also serve 5 counties from my local office. Needless to say, I can’t be at all places when I want and there is a lot of triaging and reshuffling. Though I am passionate about my work and do all that I can to prioritize all patients’ needs, it is difficult to have the level of depth I would prefer to have with each family- particularly those who are only with us a short time. This is where I found Mary Jo to be so helpful.

Mary Jo hit it right off with Pat, one of our patients who played piano and sewed, just like Mary Jo. Pat had also been a ballroom dancer. She was still tall and thin and had elements of grace, and I could just imagine her nearly floating across the dance floor. Mary Jo met with Pat, her family, and myself and we worked together to assess the most meaningful songs in Pat’s life, to put together a Music & Memory compilation for her. In other sessions where I was not present, Mary Jo assisted with helping them create a memory album- a scrapbook of Pat’s memories and most cherished moments. She also helped Pat with writing out her funeral plan and planning for her death, including what music she wanted playing while she was dying, how she wanted the room, how she would prefer visitors. Mary Jo created a safe, comfortable and gentle space for these discussions, making them almost as though they were planning for any other life event. Mary Jo helped Pat see death as just as important, or maybe even more important than other events, as she shared her final wishes and wrote her final good-bye letters. Pat was able to remain in the comfort of her home surrounded by family. Throughout the whole process, Mary Jo kept our team informed. I still visited weekly and we had nice sessions of building rapport, with Pat sharing life stories and Mary Jo making tea for us. It was always a delight to laugh and talk together.

As Pat continued to decline, Mary Jo helped me with preparing the family. We worked together to provide consistent messaging. Mary Jo kept us in the loop about concerns or needs she was noticing, and she was also open with Pat and the family as well. Pat had shared that her late husband always enjoyed poetry and especially loved Walt Whitman. She quoted “The powerful play goes on and you may contribute a verse” and talked about how she wanted to make sure she had lived a beautiful dance, a beautiful song. I feel we were able to help her with this, even in composing her last dance--her final preparation for death. Mary Jo was a perfect fit and personality to help with this, and Pat was able to pass away peacefully, surrounded by family, with her favorite Waltz playing while her granddaughter read poetry to her. It is my firm belief that Mary Jo, as the end-of-life doula on our team, was key in making all of this happen.  I was honored to partake and witness these treasured moments. I think of my own verse, what I would like to contribute, and I can only hope to have as much love and meaning and care in my final hours as these. “The powerful play goes on and you may contribute a verse.” What will your verse be? 

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Jessica Curd, LCSW is a Certified Hospice and Palliative Care Social Worker (APHSW-C), at Our Hospice in Indiana. She is a visiting professor at Indiana University and is pursuing a PhD in Social Work there as well. She is an active member of the NHPCO End of Life Doula Advisory Council and is passionate about supporting and advancing the role of end-of-life doulas in Hospice and Palliative Care. Jessica lives with her family of 4 in Greensburg, Indiana.

DAC, DEI, and Determination: Reflecting on My Summer with NHPCO

Before starting my accelerated nursing program at Emory University this fall, I knew that I wanted to spend my summer contributing to advancing equity in the healthcare field. I believed that the more I learned as I prepared to embark on a new career as a nurse serving traditionally underserved communities, the better equipped I would be to understand—and meet—the needs of my future patients. As a volunteer with Bristol Hospice while living in San Diego, I learned so much about the hospice and palliative care models after 10 hours of training modules and interacting with individuals living in care facilities. So, when I saw the opportunity to intern with NHPCO in Diversity, Equity, and Inclusion pop up, I jumped at the chance to apply, and was surprised and unbelievably excited when I was selected as NHPCO’s first DEI intern.

Getting to collaborate with the Diversity Advisory Council (DAC) this summer on so many critical projects has provided me with invaluable knowledge and a deeper understanding of the gaps in hospice care across the country and for communities that are traditionally left out or mistrustful of the American medical system. From the self-bias that is evidenced in the disconnect between hospices’ stated commitment to DEI initiatives and the tangible implementation of such programs to the unique challenges that different groups face in obtaining access to hospice care, I have learned more in the past 3.5 months than I could ever adequately sum up in words.

Among the many wonderful opportunities I have been given this summer, a few have stood out clearly as some of my favorites: writing the script for the LGBTQ+ Social Media Takeover Day in celebration of Pride Month, getting to compose questions and interview DAC Chair Nicole McCann-Davis for an upcoming NHPCO podcast on addressing accessibility and overcoming barriers to hospice and palliative care, attending many conferences and webinars like the COVID-19 Health Equity Task Force, participating as a constituent of my community at Virtual Hill Day, and helping to author a comment letter on equity to the Office of Management and Budget on behalf of DAC and NHPCO. I also was given the chance to join forces with NHPCO’s two other summer interns, Allan Hegedus and Sarah Vizzeswarapu, to write a one-pager summarizing Quality Connections data in support of PCHETA, the CONNECT for Health Act of 2019, and the Telehealth Modernization Act. While getting to assist with such important projects, I also worked with some of the most amazing people: Annie Acs and Trayvia Watson were incredible mentors (and always at the ready to field my many questions!), and the rest of the NHPCO staff was equally welcoming and kind (and understanding of confusion about various acronyms)!

One of the biggest takeaways I’ve learned from watching DAC in action is that to foster necessary changes that are intersectional and inclusive, working together and making space for all voices to weigh in is what ultimately leads to desired outcomes. As efforts like the upcoming Latinx/LGBTQ+ Focus Groups and Fall Social Media Takeover continue in full swing, I know that the Council will meet and exceed the objectives of these and countless other endeavors.

Leaving NHPCO is so bittersweet for me; while I am sad that my internship is ending, I am so excited to begin my nursing career, joining the likes of NHPCO’s Lori Bishop and Jennifer Kennedy on achieving my goal to become an RN. I am so thankful for my time here and look forward to seeing all that NHPCO and DAC will continue to achieve for the benefit of all hospice and palliative care recipients.

 

Lauren on a video call with DAC Chair Nicole McCann-Davis

By Lauren Wallace

Lauren is NHPCO's Diversity, Equity and Inclusion intern this summer. She is a graduate of The George Washington University, where she studied communications with a minor in human services & social justice and journalism. She will begin an accelerated nursing program at Emory University this fall.

A Quality Summer Experience

“Wow. I’m here.”

Having interviewed and hired almost a month before, it felt like this day would never come, but it had. I was outside the NHPCO office, preparing to walk into my first internship experience. I had been preparing for weeks for this moment, studying the Quality Connections program I would be working on, reviewing acronyms I would need for understanding conversations around the office, tirelessly taking notes, and learning as much as I could about the intricacies of hospice and palliative care. My boss, Hope Fost, had even sent me access to the Quality Connections portal early to look it over and give feedback. But the day had arrived, and it was time to put the rubber on the road.

As a first-year college student from Georgia studying Economics, I can safely say the last place I expected to be was in Alexandria, Virginia, preparing to work on the quality of hospices and palliative care centers nationwide. But here I was. My first few days were constant meetings, with multiple team members helping me get up to speed with everything I would need to know for success. The staff had everything lined up for me perfectly for me to be my best immediately and showed me the tight-knit nature of NHPCO.

Hope made sure to keep me busy on significant projects from the start, immediately allowing me to catch up on data entry for multiple programs. I awarded credit to our members for their participation in Quality Connections, including the Evaluation of Grief Support Services and the Survey of Team Attitudes and Relationships. While I enjoyed this work, I also am proud of how deeply involved I got to be in NHPCO's programs. I assisted in revamping our Measures of Excellence dashboard, wrote a new standard operating procedure for one of our trickier databases, and got to participate in our Virtual Capitol Hill Advocacy Day representing my home state, which was a great honor.

Even though I was kept busy, I had plenty of opportunities to learn about all the parts of NHPCO. I found out quickly that there is always something new to learn, even on those rare days where there is not much coming across your desk. I spoke to members of our Hospice Action Network (HAN) to learn more about their day-to-day work. Those meetings ultimately led to a project collaboration between the Quality Team and HAN, which will strengthen both teams long-term by allowing our policy advocates access to our relevant data to represent our members even better than before. I also got to try out my hand at marketing one of the Quality Team’s revamped programs!

In all of this, I learned about myself as well. I discovered that I could thrive in an environment different from any I had ever experienced. I found out that I could be more flexible than I ever had to be before. Most of all, I learned that I could do more than I thought and that I should not box myself in as much as I do. I will carry all that I have learned about caring for those near the end of life and those dealing with serious illnesses, as well as the joy of getting to work with the amazing individuals here at NHPCO, into the future as I go through all parts of my life.

 

By Allan Hegedus
Allan is an intern working with NHPCO’s quality team this summer. He is a rising sophomore at Mercer University in Macon, Georgia studying economics.

The Importance of the Words We Use

After celebrating June as Pride Month, we are pleased to share a blog on caring for LGBTQ+ people at the end of life. Edie M. Moran, LCSW, APHSW-C, a social worker with Prospero Health and a member of NHPCO's Diversity Advisory Council, offers the following reflections. 

At Prospero Health, our mission is to “Empower people facing serious illness to live their best lives now.” But providing care sure is hard to do when we have not taken the time to learn our patients’ points of view. Consider this recent example: Prospero’s care team was serving an amazing couple here in Chicago who were preparing to move out of their family home and into assisted living. During a routine team meeting, a teammate innocently asked how “the wife” felt about everything surrounding the move. Well, there was no wife in this family because both halves of the couple were men. This conversation was a simple reminder that taking the time to meet our patients where they are in life is not only valuable, but demonstrates respect to our LGBTQ+ community members. This remark was a simple mistake, really - most couples are a husband and wife. But not this very special couple, who had been together nearly 50 years!

As clinicians, we have a duty to use words to describe our patients that are the same words our patients use to describe themselves – in this instance, “husbands.” So much of our society, from the words we use to describe institutions to legal forms to generalized society-wide ideals of gender and sexuality, follows a heteronormative convention of naming. So, it can take a little mental gymnastics to undo the sometimes erroneous defaults our society uses to name issues surrounding gender and sexuality. Remember, practice makes perfect. Ask about, learn, and use all people’s pronouns. Be careful and thoughtful how you label or describe people. “Folks,” “friends,” and “teammates” are great substitutions for “you guys.” Most importantly, when you mess up, make it a point to do better! If we take the time to intentionally position ourselves with our patients in mind, we can all do even better at ensuring our patients really are living their best lives, now!

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NHPCO recently released a new resource, LGBTQ+ Resource Guide, with content developed by NHPCO’s Diversity Advisory Council. 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. Download the LGBTQ+ Resource Guide (PDF) at no cost.

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

Why Participate in the 2021 Virtual Conference - Healthcare Transformation

The past year has been unlike any other in terms of the effect of the pandemic on just about all aspects of our lives and work. And yet, while the world as seen through the COVID-19 lens has been remarkably different, there are other important changes in the health care landscape around us that may have a significant impact on our provider community. Models and demonstrations, fiscal challenges, and workforce issues are just some of the factors we must be thinking about now. 

Some of the most common questions we are grappling with are focused on “how?”

• How do we rework the system?
• How do we measure success?
• How do we integrate innovations learned through the pandemic?
• How do we improve the patient and family experience?
• How do we continue to connect to purpose in our work?

NHPCO, AAHPM and HPNA recognize that we are in a period of healthcare transformation and that has informed the programmatic content of the 2021 Virtual Conference.

  

Get an Inside Look

We invite you to review the program agenda.

  

New in 2021

The Virtual Conference will take place on one afternoon, July 29, 1:00 to 5:30 p.m. ET. 

All conference content will be available on-demand through September 30, 2021, allowing you to revisit sessions of importance or catch something you might have missed.

Register today!

Thanks to our 2021 Virtual Conference Supporter

The 2021 Virtual Conference is supported by an educational grant from Net Health. 

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.