My Aha Moment

In this Faces of Caring blog, Jennifer Kennedy, Senior Director, Quality & Regulatory at NHPCO, reflects on a very personal moment she had recently. COVID-19 has changed life for all of us and it’s moments like these that remind us that we must adjust to a new normal, even though it can be incredibly difficult. 

I had an incredible aha moment this week related to a personal loss in my family.  My 14-year-old dog Murphy, who has been a part of my family for 12 years, died with the compassionate assistance of my vet.  It was incredibly emotional and necessary to be at his side during the process as I was his primary caregiver and nurse for most of his life.  I was able to pet and hold him until he took his last breath and then I held him again until I was ready to say goodbye.  But then it was time to leave the office and I could not hug the vet whom I have known for years and has treated me and my dog with empathy and concern during the palliative and hospice journey of his life.  She said she did not want to take the risk of exposing me to the COVID-19 virus.  This was my aha moment!  It became very real to me that people are losing their human loved ones related to COVID-19 and they may not be with them at the end of their life due to infection control restrictions.  They cannot hold their loved one’s hand, hug them, or even receive comforting touch from healthcare providers.  They cannot gather for a funeral or hug or touch their family and friends.  So much of end of life care involves compassionate touch and not being able to provide that alters the experience.

As a hospice nurse who is no longer at the bedside, I knew all of these concepts since the pandemic began, but it became very real for me this week.  If I could not have been with my dog at the end of his life, I would have been extremely upset.  But, if I could not be with a loved one at the end of their life, I would be devastated and not know how to process my grief.  It is extremely important that hospice providers plan to accommodate a different grief process during this pandemic. We need to help people work through absence of presence and touch that would normally happen during the last days and hours of a person’s life.  Families cannot gather for a funeral to say goodbye to their loved one and share supportive physical touch from family members and friends.  When I think back to the death of my parents, physical touch from my family and friends is what sustained me.  

We must do the right things during this pandemic to decrease the spread of the virus, but we must also realize the toll that not being able to be with or touch a loved one at the end of their produces a different type of grief for families.  As hospice professionals, we need to be ready to meet this challenge. 

The Faces of Caring campaign was created for hospice and palliative care professionals to share their experience providing care during the COVID-19 pandemic. If you would like to share your photos and stories from the front lines, please go to www.nhpco.org/faces-of-caring. 

Hospice Bereavement Professionals Rise to the Challenge

One of the many impacts of the COVID-19 health care crisis has manifested itself in the form of complicated grief. Families are being robbed of the ability to see their loved ones who may be dying in a health care facility or are unable to mourn together because funerals and memorial services are limited in capacity. Front line health care workers are witnessing some of the most tragic events of their careers. The lasting impact of COVID-19 will stretch beyond the physical and leave deep emotional wounds that will need healing. 

Hospice bereavement professionals across the country are answering the call to provide grief support in their local communities and for front line health care workers. Patti Anewalt, PhD, LPC, FT, Director of the Pathways Center for Grief & Loss at Hospice & Community Care in Lancaster, Pennsylvania, shares her experience in providing support beyond the families her organization has cared for.

The National Association of School Psychologists are encouraging School Administrators and Crisis Teams to “be prepared and get ready” to respond to deaths within school communities that will impact teachers, staff, students and families. As a result, I was contacted to provide a two-hour training for school nurses, psychologists, counselors and administrators. Over 100 people attended and asked numerous questions. I explained that people can grieve (ie react to a loss) but not mourn. Adults, children and teens need to feel safe to mourn. Mourning is the way people express their grief reactions and there is healthy as well as unhealthy mourning. Knowing the incidence of suicide and drug overdoses are increasing at this time I addressed the important nuances to understand these types of losses. Often adults are not honest with children about the cause of death which serves to further complicate their grief. 

After talking about ways to support people’s mourning, I shared slides on how to provide individual or group support via Zoom along with three sample Zoom sessions that we have used with grieving children. By the conclusion of the session people expressed appreciation for the information, as they felt more knowledgeable and confident about how to respond to and support grieving students and their parents going forward. 

A second area we are beginning to see great need for bereavement support is with health care workers. Not only our own hospice teams, who are providing care to dying patients in environments quite different now that PPE and physical distancing is involved, but all the long-term care providers. Next week I will be offering four separate sessions at change of shift on two different days to accommodate the volume of staff at a local senior living facility. Many of their residents who have died have been at the facility for years and their deaths are having an impact on the staff who do their best to create a home-like atmosphere.

Over the years skilled care facilities have at times asked us to facilitate these types of sessions for their staff when residents die so it’s not surprising that we in bereavement are now being asked to provide this support which we now do virtually. They are struggling with the heaviness of the burden to care for patients at a time when they must use social distancing as much as possible, PPE, and serve as the link between the residents and their family members who are not able to visit. I keep describing this as a marathon, not a sprint. I believe one of the greatest concerns for administrators is the long-haul nature this crisis will have on their caregivers. 

If your program is offering grief support to your local community, front line health care workers, first responders or anyone impacted by COVID-19, please share your story with us. You can also submit your photos and stories to NHPCO’s #hapcFacesOfCaring campaign. This social media campaign was designed for hospice and palliative care workers to share their experience from the front lines amid COVID-19.

Hospice and Palliative Care Teams Rise to the Challenge

Hospice and palliative care teams are continuing to find creative ways to provide care and comfort to the patients and families they serve. NHPCO is honored to share their stories and faces through our #hapcFacesOfCaring social media campaign. We have received over 100 submissions online and many hospice programs are sharing their photos on their social media platforms and using the hashtag to ensure that they are a part of this campaign which was created to highlight those on the front lines who are providing care despite the challenges the world is facing amid COVID-19. 

Hospice care is comfort care, a holistic model that allows people into your personal space at your most vulnerable phase of life. COVID-19 has created a new reality for hospice and palliative care workers as they deliver care under new restrictions and a heavy layer of protective equipment. Some may worry that the personal touch hospice is known for will diminish because of these barriers. But the photos we have received through #hapcFacesOfCaring tell a different story. They show hospice and palliative care teams doing what they have always done – rise to the challenge and provide comfort, joy, and care to their patients and families no matter the circumstances.  

Rhonda, an AseraCare patient, wanted to celebrate her birthday with her husband. With the help of the Dreamweaver Foundation and AseraCare, Rhonda was gifted balloons, flowers, and dinner, and was able to spend time with her husband, even if it was behind glass. 

Willamette Valley Hospice posted this great photo on Instagram of one of their music therapists. They write, “Recently, music therapist Jessica and spiritual counselor Lori visited a patient outside her window to play her a song on her birthday to remind her how much they care.” 

We have received many photos of pet therapy happening from the other side of the window. The pet is normally of the canine persuasion.  Three Rivers Hospice South based in Montana, wanted to do something a little different for their patients at a local facility. They were surprised with two beautiful horses who greeted them at their windows.   

Hospice and palliative care teams are making sure their patients and families are cared for; they are also making sure their own teams, including their volunteers, are safe and well. We have seen beautiful examples of teams going above and beyond for one another. 

Hospice and Palliative Care Buffalo volunteer coordinator Lisa Nestico asked staff to submit a photo of themselves with their coworkers, family, or pets to show appreciation to their volunteers. She writes, “Many of our volunteers have been expressing their concern for our frontline staff, so part of this was to show our volunteers that our staff is doing well and the other part was so they can see how much our staff appreciates and misses them.” 

Please continue to share your photos with NHPCO. We want to tell your stories and share with the world what hospice and palliative care is truly about – caring for each other even during unprecedented and challenging times. 

CALL TO ACTION: COVID 4.0

For the past several months, the Hospice Action Network (HAN) has been working tirelessly with Congress, the Centers for Medicare and Medicaid Services (CMS), the U.S. Department of Health and Human Services (HHS) and the White House on implementing safeguards and policies that will support hospice providers and the patients and families they serve.

The last advocacy push resulted in over 12,000 advocacy actions which related in regulatory relief, statutory changes, and grant funding for the hospice and palliative care community. 

HAN continues to advocate loudly with Congress and the Administration on behalf of the hospice and palliative care community, and we could use your continued help.

Congress is preparing a fourth COVID-19 emergency package, referred to as “COVID 4.0.”  We need to ensure that the voice and concerns of the hospice and palliative care community remain heard and felt on Capitol Hill.

HAN has prepared this Action Alert, for you to send your lawmakers underlining the need for support for bereavement and trauma informed care, funding for PPE and workforce support, availability of community-based palliative care, and the need for passage of the Rural Access to Hospice Act (H.R.2594/S.1190) and the Palliative Care and Hospice Education and Training Act (S.2080). This template is customizable, so please feel free to share details about how COVID-19 is affecting you and/or your program.  

Included with the Action Alert is a script for phone calls, and Twitter and Facebook posts. Please complete as many different actions as you can and encourage your colleagues, friends, family, and fellow hospice and palliative care advocates to TAKE ACTION.

So much can be accomplished when we stand in solidarity and advocate with ONE voice. Let’s make sure Congress hears us loud and clear again and understands what we are experiencing on the ground.

Thank you for your advocacy and support!

Why Should I Attend the 2020 Virtual Conference?

Quality of Care = Quality of Life

NHPCO, AAHPM and HPNA know how important it is for hospice and palliative care providers to be unified and grounded in our goal to provide high-quality, person-centered care. That is why the 2020 Virtual Conference is focusing on quality.

Here are some answers to the questions we have received about the conference.

Yes, quality is important but how will this conference address our current realities?

Our speakers are adjusting their content to fully reflect the most relevant and up-to-date practices and necessary regulations. The world through the COVID lens will look very different in July and all presentations will reflect the latest information.

I feel like I already provide quality care, why is this information relevant to me?

It’s not just about the perceived quality of care, it’s about capturing the data and providing necessary quality information to CMS, it’s about quality improvement to meet COP requirements, and it’s about the care at the bedside.

There are so many virtual options right now, how is this one different?

VC20 focuses on the clinical and programmatic aspects and help hospice and palliative professionals explore how you connect quality with purpose. Brought to you by three industry leaders, this conference pulls together top experts in our field.

What's new in 2020?

Based on your feedback all sessions will be live-streamed with more opportunities for interaction and networking. As always, content is available to you for 90 days after the live event.

The 2020 Virtual Conference will be held on July 22 & 23. Register today to lock in the early bird rate!

Online Course: Managing the Changing Organization

Hospice Manager Development Program Upcoming Module - Updated with new COVID-related information   Managing the Changing Organization - Register Now May 11 - June 8, 2020   This module, with an update to reflect managing during the COVID crisis, will help you understand why and when change happens, learn how change affects people, develop leadership strategies for implementing change and learn to manage change to ensure positive outcomes. Cultivate specific skills and strategies you can use in your role as a manager.   This instructor-facilitated module is conducted online over a period of four weeks. Set your own schedule for completing the course work; online learning does not require that you be in a classroom at a set time, which is a perfect arrangement for busy hospice managers!   Registration is also open for these upcoming modules: Managing Workplace Negativity Emotional Intelligence Have a friend or colleague who would benefit from this course? Forward this email to them.   Learn more about the Hospice Manager Development Program.   Questions? Contact education@nhpco.org

HAN Call to Action!

For the past several months, the Hospice Action Network (HAN) has been working tirelessly with Congress, the Centers for Medicare and Medicaid Services (CMS), the U.S. Department of Health and Human Services (HHS) and the White House on implementing safeguards and policies that will support hospice providers and the patients and families they serve.

The last advocacy push resulted in over 12,000 advocacy actions which related in regulatory relief, statutory changes, and grant funding for the hospice and palliative care community.

HAN, an affiliate organization of the National Hospice and Palliative Care Organization, continues to advocate loudly with Congress and the Administration on behalf of the hospice and palliative care community, and HAN encourages all hospice and palliative care advocates and supporters to continue to help advocate for the community.

Currently, Congress is preparing a fourth COVID-19 emergency package, referred to as “COVID 4.0.” We need to ensure that the voice and concerns of the hospice and palliative care community remain heard and felt on Capitol Hill.

HAN is issuing an Action Alert, raising awareness of the need for support for bereavement and trauma informed care related to COVID-19, funding for PPE and workforce support, availability of community-based palliative care, and the need for passage of the Rural Access to Hospice Act (H.R.2594/S.1190) and the Palliative Care and Hospice Education and Training Act (S.2080). This Action Alert template is customizable, so advocates are encouraged to share details about how COVID-19 is affecting you and/or your program if you are a hospice or palliative care provider.

HAN also created a script for phone calls, and Twitter and Facebook posts. Please complete as many different actions as you can and encourage your colleagues, friends, family, and fellow hospice and palliative care advocates to TAKE ACTION.

Together, HAN and NHPCO have seen what can be accomplished when our community stands in solidarity and advocates with ONE voice. Let’s make sure Congress hears us loud and clear again and understands what we are experiencing on the ground.

Visit the Hospice Action Network to find the Action Alert.