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. 


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 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.


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


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.

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.

 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. 

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.


 With the support of NHPCO, the COVID 19 Grief Project was launched in February of 2021 and continues today. Go to to learn more.


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