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.