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