Friday, December 17, 2021

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/.

Tuesday, December 7, 2021

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!




Tuesday, November 23, 2021

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.

-###-

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.

 

Friday, October 22, 2021

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.”

-###-

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



Wednesday, October 13, 2021

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.

-###-

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.

 

Thursday, October 7, 2021

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

Friday, September 24, 2021

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.