Monday, April 18, 2022

Inspired by Hospice Volunteers

By Ben Marcantonio

As a former hospice executive, I can tell you that volunteers are, and always have been, the heart of hospice. It’s important to remember that historically, hospice in the United States started as a volunteer-led grassroots movement. Later, the hospice Medicare benefit was enacted into law, formalizing the hospice system and minimum standards of care. Volunteer support for patients is quite literally a requirement of the Medicare regulations governing hospice care.  

This week, the country celebrates National Volunteer Week. NHPCO and our member hospices nationwide send a heartfelt “thank you” to hospice volunteers. Without you, hospices could not deliver the quality of care that end-of-life patients deserve.  

 As part of our National Volunteer Week celebration, I want to share a few resources with you:  

  • The first is a video – “The Gift of Volunteering” – in which Mercedes Ibarra, a volunteer with Silverado Hospice in Irvine, CA, shares her experience as a hospice volunteer.
  •  The third is a list of five inspiring hospice volunteers who were recently honored as at the recipients of NHPCO’s 2022 Volunteers are the Foundation of Hospice Awards. Each honoree’s name links to a write-up about their service. 
In the first video above, hospice volunteer Mercedes Ibarra talks about her patients, saying: “I never knew I could love someone I didn’t know, that wholeheartedly.” That type of connection, that inspiration, that love – I saw that over and over as a hospice leader. That’s why I say that hospice volunteers are the embodiment of the theme of this year’s National Volunteer Week – “Volunteer Faces of Caring.” I hope you are as inspired by hospice volunteers as I am…not only this week, but all year round.  

P.S. If you are a hospice looking for communications resources to support your National Volunteer Week efforts, NHPCO is pleased to offer this NVW toolkit to our members. 


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Ben Marcantonio, MS, MEd, LMFT, is the Chief Operating Officer at the National Hospice and Palliative Care Organization (NHPCO). He joined NHPCO in October 2020, bringing 30 years of leadership experience in educational, healthcare, and social service settings. Prior to joining the NHPCO senior leadership team, he was with Hospice of the Chesapeake where he served as President and Chief Executive Officer (2015-2020) and Chief Operating Officer (2013-2015). Prior to relocating to Maryland in 2013, he served as Chief Administrative Officer at San Diego Hospice and The Institute for Palliative Medicine.


Tuesday, April 12, 2022

National Healthcare Decisions Day: A Time to Think Ahead

By Edo Banach, NHPCO President & CEO 

In April, I’m always reminded of Benjamin Franklin’s famous quip that “Nothing is certain except death and taxes.” There’s a less famous, but in my opinion equally true corollary: “There are two things no one wants to think about: death and taxes.” 

NHPCO worked with our partners fifteen years ago to help found National Healthcare Decisions Day because we believe that people should be at the center of their health care decisions. NHDD continues to emphasize the importance that every person plays in the medical care they receive and to take action to make sure their wishes can be met even if they are unable to direct their own care. The only way to make sure that our priorities are understood and respected is to make sure that our care providers and loved ones know what our wishes are.

It's a heavy subject, to be sure, and like many important things in life, it’s worth taking steps that feel difficult at first. You will be glad you did, and so will the people who care about you the most. So, as we approach National Healthcare Decisions Day 2022, here are three steps you can take to make sure your can have a say in your health care, even if you cannot speak for yourself:

Learn about advance care planning, Advance Directives, and appointing a Healthcare Agent on CaringInfo.org and the National Institute on Aging. Even if you are very familiar with advance care planning and Advance Directives, it’s worth refreshing your memory, and making sure your plans still align to your values and wishes. Also, visit the Conversation Project for tips and tools to guide these important discussions with your care providers and those closest to you.

Choose a Healthcare Agent to make medical decisions for you, should you not be able to. Speak with that person about your values and wishes for your healthcare.

Ensure you have completed the Advance Directive form for your state or territory.

Hospice and palliative care providers always put patients at the center of the care plan. On National Healthcare Decisions Day, you have a reminder to put yourself at the center, so your loved ones will know how care for you if they ever need to step into that role. Your wishes matter, so make sure they are known.

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Edo Banach, JD, is the President and CEO of the National Hospice and Palliative Care Organization. NHPCO is the leading organization representing integrated, person-centered healthcare, NHPCO gives ongoing inspiration, practical guidance, and legislative representation to hospice and palliative care providers so they can enrich experiences for patients and ease caregiving responsibilities and emotional stress for families. Visit www.nhpco.org

 


Wednesday, April 6, 2022

Grief Lessons Learned

By Arlene Stepputat, MA

“When grief is expressed and witnessed– listened to– without judgment, the physical and mental pain lessens and can re-awaken the human spirit.” 
~
Nathalie, end-of-life doula

Born out of the Covid-19 pandemic, and the desire to be of service in a time of death unlike anything seen before, the NHPCO End-of-Life Doula Council began a discussion of how we might be able to help.

Council members saw firsthand that hospices and other grief support options were overwhelmed. End-of-life doulas are trained to provide grief support–this felt like an ideal opportunity to develop a program of support for hospices and community members.

The premise was simple. Trained and seasoned end-of-life doulas volunteered to support people grieving due to loss during the pandemic, whether that was a Covid death or not. Free, confidential, one-on-one sessions via telephone or Zoom were offered to anyone in the US. Services were available in English or Spanish.

Thirteen months later, we have 10 volunteer doulas, the program has received more than 50 requests and each one has been answered. Once a month the doulas gather to share, make inquiries, and offer new resources.  

We asked our doulas to tell us what they experienced and what they are learning about grief. Here are some of the responses.

The depth of grief that I witnessed was palatable. Deep profound losses, the kind that change people’s lives, including my own. Bearing witness to their stories, to their experiences, and to their grief, allowed me to shed away any feeling of self-pity or martyrdom. One person described it as “being able to breathe better” after feeling heard. Personally, bearing witness has allowed me to truly slow down, become fully present, and become aware that life is truly precious. What a gift it is to be able to be with another while we journey together in this way, and so grateful for this grief program to guide the way. 
~Lynne- Anne

My grief support was basically to lend a listening ear, in a non-judgmental fashion; occasionally engaging in conversation when it was appropriate and welcomed. I have learned to become more comfortable with expressed anger, and not personalize what was shared. Some of the anger expressed was directed towards frustration with the medical profession and the providers who served their loved one who died. I usually waited until about the third session with my clients before I told them I am an RN with 17 years of Hospice experience. For some reason, that would usually help to lessen their anger and resentment.
~Dana

What is evident is that the pandemic so overloaded the medical system, that expectations for the kind of care one wanted for a loved one was rarely met given the sheer volume of those in need. Grief about not being able to be with people as they passed and the rules imposed to manage the spread of the disease showed up as anger at the system.

I had a client that had experienced a sudden and tragic loss. She had no one to speak with–not even her partner- as she felt it was a burden to talk about her loss. Speaking with me, she felt she was in a safe space, which was non-judgmental and comforting.
~Vicki

 I could assess that by the fourth session, there was a shift in their attitude about their grief process and finding some meaning in their losses. They all seemed to be trying to redefine their relationships with the loved one they had lost, and trying to live into a future without their beloved. All of them still had a desire to try and control their grief situation, even though they realize their losses are an uncontrollable situation. 
~Dana

The doulas provided a loving presence that allowed all expression. People could finally give voice to thoughts and feelings that were being kept inside.

For each of us, the awareness and expression of our grief can make us more authentic. Grief teaches us how to be present and centered, how to let go; it teaches us how to value life and death.

I have learned that grief is a universal yet extremely personal combination of emotions: raw, numbing, physical, visceral, that needs to be felt fully.
~ Nathalie

It has been said that particularly in our Western culture, we are grief ‘illiterate’. It is time that we all learned that holding another’s grief is beyond cards, Kleenex, and casseroles. We must learn the art of tending grief. We must start with our own and then as we continue our healing, we can better hold space for one another.

Here’s one final reflection:

I have learned that keeping an open mind is the best way forward.
I have learned that community is an essential ingredient in the grief recipe. 
I have learned that holding space for others and for myself (without trying to fix anything) is the most loving way to handle grief.
I have learned there are NO experts in grief: I am always a student.
I have learned that sharing one's grief is as important as bearing witness to one's grief.
I have found that grief needs to be listened to - more so than responded to.
I have learned that most often all that is needed is  a warm blanket and a hug.
I have learned that grief is a non-linear journey.

~Rai

 With the support of NHPCO, the COVID 19 Grief Project was launched in February of 2021 and continues today. Go to nhpco.org/doula-grief-support to learn more.


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Arlene Stepputat, MA, is an end-of-life doula, a hospice chaplain and minister and a certified Advanced Care Planning Facilitator. She holds a Master’s Degree from Columbia University in Family and Community Education and a Master’s in Theology from Peace Theological Seminary. Arlene is a member of the NHPCO End-of-Life Doula Advisory Council. Her website is https://dyingingrace.com.

 

Wednesday, March 16, 2022

NHPCO Celebrates Hospice Providers Successfully Earning Quality Connections Rings in 2021

249 Hospice Organization Participated in Inaugural Year of Innovative Quality Improvement Program

NHPCO is proud to share the names of member organizations that have earned rings in the inaugural year of its Quality Connections program. Launched by NHPCO in January of 2021, Quality Connections (QC) was designed to enhance the knowledge base, skills, and competency of hospice and palliative care professionals and providers for continuous quality improvement.

QC is structured around four fundamental pillars which are represented by four QC rings: Education, Application, Measurement, and Innovation.

“To simply say that a hospice organization is interested in quality is not enough. A hospice must demonstrate its commitment to patient- and family-centered care with measurable results and outcomes. One of the most effective ways to do this is through active participation in NHPCO’s Quality Connections,” said NHPCO President and CEO Edo Banach.  “As we share the results from the first year of Quality Connections, we are able to shine a light on hospice organizations that have made significant strides in improving their quality of care. This matters to patients, families, payers, and providers, and I congratulate the providers that participated.”

Of the hospice organizations that embarked on a continuous quality improvement journey last year, 116 programs earned rings reflecting their success in Quality Connections. Among those programs, 27 hospices have the distinction of achieving the top levels of earning three or four rings.

NHPCO salutes all the hospice programs that worked to demonstrate an organizational wide commitment to quality.  For the full list of hospices earning rings in 2021, see the full NHPCO press release (03/16/22).

Each Ring has specific activities incorporating practical resources to progressively track and improve both clinical and organizational quality. Activities such as quarterly data reporting and benchmarking, NHPCO’s E-Online courses, peer case studies, and engagement will be part of an organization’s quality journey. Additionally, participants will find activities that are focused on promoting diversity, access, and inclusion within an organization and with the communities they serve.

“For a hospice organization to be activity engaged with continuous quality improvement, commitment throughout the entire organization at all levels of staff is required,” said NHPCO Vice President of Quality Aparna Gupta. “And success should be celebrated at all levels within an organization with the reminder that the benefits are ultimately seen at the bedside of the person at the center of care.” 

QC is a benefit of NHPCO provider membership. For organizations that already have an established quality improvement program, Quality Connections can build on and streamline what they already have in place. If a provider needs to enrich their quality improvement efforts, Quality Connections will provide the guidance and resources they need.

It is not too late for NHPCO provider members to enroll in Quality Connections for 2022. Follow the steps in the Quality Connections User Guide to enroll in the program and to start your quality improvement journey.  

For their support of the Quality Connections program in 2021, NHPCO thanks its Gold Level Sponsors: Curitec and Optum Hospice Pharmacy Services, and Silver Level Sponsor ADVault, Inc.



Thursday, February 24, 2022

This is the story of a girl named Sam and a doula named Trish

By Jessica Curd, LCSW

Children are not supposed to die. It flies in the face of expectations we have of the natural order.  And yet, it happens. Sometimes the death is sudden and sometimes it is from life limiting illness. As a hospice social worker, I had the honor of supporting dying children and their families. Losing a child can be particularly complex – in anticipating death, there is still a hope and wish for children to improve and endure. There are other avenues of hope in death, however, and it was a dying child and her supportive doula that helped me see aspects of hope even in the face of death.

Children, even when dying, are brave, vulnerable, and full of life, humor, and love. They are raw and real and openly share their thoughts and feelings, and are often more prepared for their death than their parents, helping to support and prepare family and friends.

One family I remember well had three adopted children, two of whom had terminal illnesses. They had fostered these little ones and endured the arduous process of adoption, combined with learning all the aspects of care their children would need, often through long hours of the night. One decision they made early on was to reach out to an end-of-life doula, who they heard about at their church just weeks prior to one of their children being referred to hospice. This decision ended up making all the difference for them.

Sam’s family reached out to doula Trish through a church connection, and were pleasantly surprised to learn that Trish was a volunteer with the hospice that would be serving their dying daughter Samantha. Trish was new to the hospice organization, but she was an experienced volunteer. She was in her twenties, studying to be a social worker, and had a vibrant and playful personality. She was a perfect match for Sam, age 6, who had a contagious laugh and a heart full of love.

One of the greatest benefits of having Trish as a doula was that she could spend a lot of one-on-one time with her. In my role as a hospice social worker, I often had a caseload of 35-60 patients at any given time, wishing I could be in four places at once and knowing I needed to triage. It brought great comfort to know that Trish was visiting Sam every day–playing peek-a-boo, coloring, singing and sitting with her as she watched Barney on TV.

Trish kept me informed on Sam and her family. One day, while watching Barney, Sam pointed to clouds and then gestured “sleep”. Trish realized that perhaps Sam had some awareness of spirituality or death and called our chaplain. He and I made a visit along with Trish, as she had developed the skills to communicate with Sam. It was at that visit when Sam pointed to “goodbye” and “Barney.” When asked if she was talking about heaven and sleeping, Sam became quiet and looked to Trish. She had a trust and familiarity with Trish that allowed Trish to read right away that Sam was needing help finding the words. Trish used the communication board and provided soothing encouragement. Sam then said “yes, I bye.” Even at her age, she seemed to know. We were amazed. We also asked if she wanted Barney with her for Heaven and she giggled and looked at Trish. Trish asked her again and pointed to some pictures as well. Sam pointed to Barney and smiled and Trish agreed that Sam wanted Barney with her when she died, and maybe playing on the TV. We used this conversation together to relay end-of-life wishes to the family and continued to work with them to plan for Sam’s death. Trish and Sam’s parents made a scrapbook and some memorial items such as hand and foot molds. They created a playlist of Sam’s favorite music to soothe her and to use for her memorial.

Sam slept often and progressed toward death. Though the team came together and surrounded the family with support, Trish’s presence was invaluable. She increased her hours, stayed with Sam so her parents could get a break, and continued to ensure Sam received comfort measures and helped the family track this. She supported Sam’s siblings by singing to all the kids together and playing guitar for them.

 At the time of Sam’s passing, Trish was right there at her bedside, along with her parents, while Barney’s “I love you” song played and they held hands in reverence for this sweet and innocent life. It was a powerful and beautiful moment. Inside the pain and trauma and imperfections of life, Sam died peacefully and just as she wanted. The chaplain and I arrived at Sam’s bedside to provide comfort and prayer. Trish and I called the funeral home and helped prepare them for next steps. They wrapped Sam in her favorite blanket, tucking Barney under one of her arms, close to her heart, for her journey to the funeral home.

Sam brought us hope and bravery in the face of heartache and tragedy. In the same way, Trish entered this family’s life when they needed her the most, with an invaluable contribution of support and friendship. Trish and Sam’s relationship impacted the hospice team, reminding us of the value of the deep and meaningful care end-of-life doulas provide.


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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.

Tuesday, February 8, 2022

Register for February Project ECHO free learning session

National Hospice and Palliative Care Organization will present its next Project ECHO online, learning session on Wednesday, February 23 at 3:00 p.m. ET.

This month’s casestudy involves a 74-year-old female patient with COPD and a history of mental illness and opioid use disorder. Patient was previously with agency, but revoked hospice benefit when undergoing surgery for femur fracture. Though staff had assessed safety concerns during the first admission, she was readmitted given need for hospice care and meeting eligibility requirements. Patient continued to have unmanaged pain, SOB, anxiety, and other symptoms of mental illness, such as erratic mood swings and aggressive behaviors

Faculty for this Project ECHO session are:

  • Eric Bush, Chief Medical Officer, MD, Chesapeake/Chesapeake Supportive Care
  • Deena H. Cress, MSW, APHSW-C, CCISM, Director of Psychosocial Services and We Honor Veteran Program, LHC Group-Hospice Division
  • Lauren Dimock, BSN, RN; Nurse Case Manager
  • Mackenzie Daniek, RN, BSN, CHPN, CHPCA; Director, Providence Hospice of Seattle
  • Kate Falkner, LICSW, Clinical Manager | Providence Hospice of Seattle

Free registration is available online.



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/.