Hospice and Structural Racism

Don’t go there; please don’t go there, she thought to herself as her patient began to complain about the country going to hell because of Black people. Adding insult to injury, he ignored the obvious fact of her race—to him she was invisible, an “other.” Although hurt and angry she said nothing, knowing her supervisor would tell her, “Well, you know he is demented; we don’t want his family to fire us and choose another hospice.”

Hospice has a long tradition of providing person and family centered care for those who are dying. That’s as it should be. NHPCO’s website statement on structural racism and health inequities commits to eliminating structural racism that creates barriers to care for all. The organization demands “that every life be valued and respected.” Do these same principles apply to hospice service caregivers?

How does a hospice organization prepare and support its employees who experience patient and/or family bigotry (racism, sexism, homophobia, transphobia, xenophobia etc. and the intersection of these)? Would supervisors at your workplace respond as the one above? If so, what message is being sent to the hospice worker? Why should the staff suffer racist or other oppressive forms of abuse, in deference to a patient because he is dying?  What is being said about relative worth—about value and respect? And, how is focusing on the bottom line different than arguing slavery was a necessary evil for the sake of the economy? These questions warrant honest conversations.

Hospices are further challenged knowing a client’s preference for hospice caregivers based on race, ethnicity and gender leads to better outcomes and symptom management. Of course it does, don’t we all feel better when we have our way? Those of us who pursue social justice must ask at whose expense. Change will not come without pain, especially for those who assert superiority. Just as confederate flags must come down despite the blow to “southern pride,” the bigoted requests and behaviors of patients/families must not be tolerated. Otherwise, the status quo will remain, and staff on the receiving end of such inhumanity must continue to numb their souls. Is that a fair exchange for better outcomes and symptom management for the patient?

Hospice providers have a moral obligation to equally value the worker by empowering her to respond, “I understand that is how you feel but it’s not my view; please do not say those things to me.” Further, hospices must have clear equity policies that guide decision-making and offer training and support to staff when these inevitable indignities are visited upon them.

Let’s let patients and families know, “Although our hospice strongly supports patient preferences, we will not when they are based on bigotry. Would you like us to refer you elsewhere?”

 Eliminating structural racism requires making difficult decisions.

Robert A. Washington, PhD
Retired Hospice Clinical Director
Washington, DC

Image: Harvard Business Review

Hospice Ensures Patients and Their Beloved Pets are Cared For

Even during a public health crisis, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. Columbus Hospice of Georgia and Alabama exemplifies #hapcFacesofCaring by recognizing the unique bond that many of their patients have with their beloved pets and caring for these pets like they are their own. 

The COVID-19 pandemic brought on many changes for our communities and modifications in the workplace. Columbus Hospice of Georgia and Alabama strived to maintain as much “normal” as possible to our patients and caregivers. Part of this was ensuring that our patients and caregivers continued to receive as much support as we could safely provide during their end of life journey. 

The volunteer services department at Columbus Hospice manages the Pet Peace of Mind Program for patients. The pandemic has brought increased isolation, sadness, and for many, diminished physical contact. One thing that Pet Peace of Mind recognizes is the powerful emotional and physical connection that pets can provide. Columbus Hospice continued to provide Pet Peace of Mind services through the pandemic which in turn impacted the lives of our patients, caregivers, and staff in a positive way.

When COVID-19 precautions first started, there were many efforts made to keep patient care at Columbus Hospice as uninterrupted as possible. Life did not stop, and emergencies still came up - even with patients’ pets. Many veterinarians had to modify how they provided their services. Some had limited scheduling, long waits, and caregivers had to wait in the car while their pets were seen. Ms. Q had 2 dogs and 2 cats, and they all needed care. The patient and caregiver were unable to transport the pets to the vet but with the team efforts of a volunteer, a volunteer coordinator, and a hospice nurse, all animals got the care they needed. The patient was thankful that all her fur babies received care and it decreased some of her stress.

Diamond’s owner had two major things in his life that made being at home alone more comfortable: Diamond and Diamond’s older brother, Buddy, a distinguished, greying 12-year-old black lab. Buddy and Diamond’s dad was a Columbus Hospice patient and he died during the month of May. The patient lived alone, and his only regular companions were Buddy and Diamond.  His caregiver lived out of town and knew very little about either Buddy or Diamond’s history. When the patient died the caregiver was scrambling from two hours away trying to arrange Buddy and Diamond’s future.  PPOM had been supporting the care of Diamond and Buddy while the patient was on Columbus Hospice and was able to provide vet information and history about the dogs to the caregiver. Sadly, Buddy died a few days after his “dad” but PPOM was able to support Buddy staying in the home with the patient until the patient died.  Two-year-old Diamond, however, found a new home with the help of Columbus Hospice and is thriving with his new dad Cheron.  

Diamond and his new dad Cheron.

While the focus of Pet Peace of Mind isn’t about pet therapy, it recognizes the positive impact animals have on humans.  Beethoven, the Columbus Hospice therapy dog, had been visiting a patient regularly for about six months in a nursing home facility prior to the pandemic.  The facility this patient lived in suspended family, friends, or volunteers from visiting patients as a precaution. Volunteer Shannon and Beethoven got creative and did a visit outside a patient’s window on Easter. Shannon said that the smile on the patient’s face when she saw Beethoven through the window was priceless.   

If you would like to share the creative ways your hospice and palliative care team is caring for patients amid the COVID-19 crisis, please send us your photos and stories so you can be featured in the #hapcFacesOfCaring campaign. 

NHPCO To Welcome New Chief Operating Officer Ben Marcantonio

The National Hospice and Palliative Care Organization is proud to announce that Ben Marcantonio, MS, MEd, LMFT, will join the NHPCO leadership team as Chief Operating Officer in September 2020. In joining NHPCO, he brings 30 years of leadership experience in educational, healthcare, and social service settings.

Currently, Marcantonio is the President and Chief Executive Officer of Hospice of the Chesapeake, a role he has held since 2015. He first joined the organization in 2013 as Chief Operating Officer. Prior to relocating to Maryland in 2013, he served as Chief Administrative Officer at San Diego Hospice and The Institute for Palliative Medicine.

Marcantonio has an extensive background in working with multidisciplinary clinical and management teams in a variety of educational and clinical settings.

“With his extensive experience in the field and a keen understanding of our vision for the future of person- and  family-centered care, Ben Marcantonio brings a wealth of knowledge and professional skills to help us continue our important work at the national level,” said NHPCO President and CEO Edo Banach.

Marcantonio holds a Master’s of Science in Counseling from San Diego State University, a Master’s of Education in Administrative Leadership from the University of San Diego, and a Bachelor of Sacred Theology and Philosophy from the Gregorian University in Rome, Italy.

“I am looking forward to joining NHPCO to advance person-centered healthcare and to promote quality of life for those living with serious illness or facing the end of life. I am excited about being a part of a team that has been dedicated to supporting programs across the country in this endeavor over many decades,” said Ben Marcantonio.

For those interested in learning more about hospice, palliative care and advance care planning, visit NHPCO’s CaringInfo.org website.

Planting Seeds of Kindness

Even during a public health crisis, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. Visiting Nurse and Hospice for Vermont and New Hampshire exemplifies #hapcFacesofCaring by granting a patient’s wish for greenery.  

At 77 years old, Barbara strongly values her independence and describes herself as having a gypsy soul. She has a deep spiritual appreciation for nature and has lived successfully in the woods of southern Vermont for much of her life. Barbara lives alone and has chronic lung disease.  

Due to her worsening condition, Barbara is unable to do many of the things she used to love, one of those things being gardening. When asked what makes her happy, Barbara answered, "Flowers and gardening." She lit up while describing all of the vegetables she would love to plant and all the flowers she enjoys looking at. 

With the goal of bringing Barbara's life some joy and beauty, three members of her care team volunteered their time to spend the day planting flowers outside of her home and potting flowers for her to admire while sitting in her favorite chair on her enclosed porch. Now, everywhere she looks, Barbara is surrounded by beautiful flowers. 

"She was the most vibrant I've seen her in a long time," said her spiritual care counselor, Heidi. "Barbara was able to join in something that brought joy to her whole being." Barbara thanked them all over and over for what they had done for her.  

"Through a long life of hardship and pain, Barbara has learned to survive and adapt to whatever happens," said Patty, a hospice volunteer. "Her strength, courage, and smile have captured my heart." 

If you would like to share the creative ways your hospice and palliative care team is caring for patients amid the COVID-19 crisis, please send us your photos and stories so you can be featured in the #hapcFacesOfCaring campaign.  

CentraCare’s Music Therapists are Faces of Caring for the Community

Even during a public health crisis, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. Nola Varilek of CentraCare Hospice shares how their music therapists are going above and beyond and exemplify #hapcFacesofCaring. 

CentraCare Hospice has been finding new ways to support patients and health care workers that we collaborate with during the health care crisis.

Our board-certified music therapists have been supporting hospice patients with music therapy from the outside-in sessions when the weather is agreeable. And when the weather is inclement, they are using iPads to facilitate sessions. They have also led group sing-alongs for patients celebrating milestone events such as birthdays and anniversaries.

There is also a trickle-down effect when visiting patients in long-term care or assisted living facilities because of the great benefit for the co-residents, especially for those living next to our patients. It’s been fun to see their windows open when the music begins and join in on the experience. I was in attendance at one of these sing-alongs and a lady called me over to her window to tell me that she had been having an extremely tough day herself because she was so terribly lonely and couldn’t have her family and friends visiting, so she wanted me to know how our music therapist’s work brought so much joy to her. 

Recognizing the toll that COVID-19 has taken on long-term care staff, as well, our hospice chaplains and music therapists have teamed up to offer a blessing and a song of thanks and support for these essential workers. Most often we provide this event from the outside-in, but sometimes staff choose to socially distance with us outside their facility. Either way, it's an equally moving experience for everyone. We also provide the facilities with a framed copy of the blessing that can be displayed in a staff area for those who are unable to join us for the live event, and as a daily reminder that we are thinking of them.

Music therapy visits in the time of COVID can be very challenging due to masking requirements. Music sharing and patient connection can be most difficult especially with patients who have dementia or a mental illness, who look for and rely on facial cues for social interaction. Our music therapy team has worked extremely hard to provide the most meaningful experiences to everyone they see. CentraCare Hospice is deeply grateful to our team members who are so willing to attempt new ways of care and support for our patients and families.

If you would like to share the creative ways your hospice and palliative care team is caring for patients amid the COVID-19 crisis, please send us your photos and stories so you can be featured in the #hapcFacesOfCaring campaign. 

National Healthcare Decisions Day – July 16, 2020

NHPCO Encourages All Americans to Learn about Advance Care Planning on National Healthcare Decisions Day, July 16, 2020

National Hospice and Palliative Care Organization, along with other national, state and community organizations, is working to raise awareness of advance care planning on National Healthcare Decisions Day, an annual day of national outreach that falls the day after citizens across the U.S. have completed their federal income tax returns. Traditionally, NHDD is marked on April 16 but due to the COVID-19 pandemic, the income tax deadline for 2020 was July 15 – and today is National Healthcare Decisions Day!

“National Healthcare Decisions Day is an important day of awareness and education, focused on encouraging everyone – including those who are healthy and in the prime of their life – to think about, document and share decisions about the care they would want if faced with a medical crisis,” said NHPCO President and CEO Edo Banach.

Advance healthcare decision-making includes completing an advance directive (also known as a living will) and appointing a healthcare power of attorney (someone to make healthcare decisions for you if you are unable to speak for yourself). However, equally important are the conversations with family and loved ones about healthcare preferences and choices.

Documenting your end-of-life wishes in the event that you are terminally ill or critically injured and unable to talk or communicate is important for all people, regardless of age or medical status. Hospice and palliative care providers are important sources of information for advance care planning and many hospice and palliative care organizations are actively working to promote awareness and provide advance directives, not only on July 16 but all year long.

NHPCO’s CaringInfo.org website has free, state-specific advance directive forms and information on advance care planning. Help ensure your loved ones and healthcare providers know how to honor your care decisions by filling out these important documents today.

“With healthcare, ‘your decisions matter,’ however, others need to know your wishes to honor them. There are no wrong answers when thinking about healthcare choices and completing an advance directive. Please use National Healthcare Decisions Day to decide, discuss, and document your wishes, whatever they may be,” said Nathan Kottkamp, Founder and Chair of National Healthcare Decisions Day.

The Red Suit: How a Chaplain Helped His Patient See Care Like No Other

This Faces of Caring blog post submitted by Mountain Valley Hospice & Palliative Care demonstrates how a chaplain went above and beyond to care for patient, forming a strong bond that lasted even after the patient died. 

Hospice Chaplain Jonathan Casstevens

For many individuals, memorial services call for dark colors, with attendees often wearing black. But at one particular gathering in April, the color of choice was red. Red flowers, red shirts worn by pallbearers, red words read from the Bible, and in the middle of all this, a chaplain sporting a bright red suit. 

The chaplain, Jonathan Casstevens, had long planned to wear the suit in loving memory of the patient, Ada Branson. It was his way of honoring Ada, who suffered from a form of blindness that allowed her to see only one color, red. 

Upon her admission, Ada expressed she did not want a chaplain. However, at the family's request, Jonathan stopped by one day to talk with Ada, not as a chaplain but as a supportive member of the hospice team. He and Ada immediately enjoyed each other's company. "She was laughing, I was laughing," he recalled. "We had a great time together." 

At the end of their initial meeting, Jonathan told Ada to let her nurse know if she wanted him to return. Her response was straightforward: "Oh, you're coming back," she told him that day. "Can you come back tomorrow?" 

Jonathan obliged Ada's request by visiting every two weeks. Serving as her chaplain, he provided spiritual support for any questions or concerns she had. He learned that Ada had a type of blindness that allowed her to see only the color red. To accommodate her disability, Jonathan ordered two bright red long-sleeved shirts. "Everybody on our team knew, if I was wearing red, I was going to see her," Jonathan said. 

As the seasons passed, Jonathan was able to minister to Ada during times good and bad, including deaths in her family. Those times strengthened their bond and friendship. 

On Valentine's Day, Jonathan gave Ada a large bag of caramel candies marked with the familiar red Bulls-Eyes brand. During that visit, the 95-year-old confided in him a special request: she wanted him to speak at her memorial service. Jonathan agreed to it and added a promise that he would wear a red suit that day, as a tribute to her. 

On April 18, Jonathan received the news he had been dreading. Ada, his beloved patient and friend, had died. Because of the COVID-19 pandemic, Ada's memorial service had a limited gathering of her closest family. Among that select group of loved ones was Jonathan, standing by her graveside, wearing the red suit he promised her. 

"Honestly, it's a one and done suit," Jonathan said. "That was her suit. People didn't think I would wear it. But I was so honored to be able to serve her as her chaplain, but more importantly as her friend. I did it to keep my promise to her, to show her how much I loved her, and to honor and cherish her memory." 

"My goal as a chaplain is to show the person I serve, and their family, the love I would want my mom and dad to experience if they were in our care," Jonathan concluded. "If you really love what you do and you love the people you serve, they become your family."  

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.