Friday, November 20, 2020

The Space where Hospice and COVID-19 Meet

Even during a public health emergency, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. During National Hospice and Palliative Care Month, Transitions LifeCare welcomes one of their own who shares her experiences as a health care provider during COVID-19.

My Job As A Hospice Nurse

I started my job as a hospice nurse two years after placing my husband’s dusty ashes into a cool, marble niche of our church’s columbarium. My move into working for hospice was seamless. I found a nurse
manager position posted at the hospice where Greg died. I applied, interviewed, and was offered the job over the next three days.

My first year in hospice was brutal, each day an exhausting trek up a steep learning curve. I insisted on doing patient care, knowing I would never be a good manager until I understood what my team was actually doing. Months ticked by, I learned about billing and Medicare regulations, I learned about the Comfort Kit – a hospice first aid kit, and I witnessed patients move into the pause of death. After a year, I had days I was proud of, where I offered support and guidance where it was most needed, where I closed my laptop with a sense of accomplishment. Then COVID-19 came along.


Sometime in February, another manager mentioned that we should talk about the coronavirus at our next staff meeting. His wife was a researcher and quickly recognized the significance of the news from China, of the first cases popping up on the west coast. In early March, we started updating a few policies and procedures. By mid-to-late March, work was completely turned upside down. Every workflow, every guideline, every policy was reviewed and rewritten to accommodate the presence of the coronavirus in our community. We launched a system for implementing telehealth. We developed PPE guidelines for staff doing direct patient care, changing and updating them as the CDC learned more about viral transmission. Most staff started working exclusively from home.

Patients and staff fit into three categories: 1) presumed negative, 2) person-under-investigation, or 3) positive. Leadership implemented complex algorithms to track the status of every patient and staff member. We partnered with a local lab to test patients and staff. Many of our patients live in long-term care facilities with their own set of rules. More spreadsheets and algorithms were developed to keep track of each patient at each facility with each set of rules.

Lock Down Creates Loneliness

As news showed body bags pouring out of nursing homes, some facilities went into almost complete lock down, prohibiting any visitors. Many cut off the hospice social worker, chaplain, CNA, and volunteer, allowing in only a carefully screened, fully PPE-protected hospice nurse. Families were severed from prior routines. Used to visiting loved ones weekly (sometimes daily) to read or share a meal, they were told they could come no more. Patients with memory disorders, who couldn’t navigate video or phone visits, were suddenly severed from every molecule of familiarity. Even the med tech delivering their medications appeared masked and gowned, once-familiar eyes now behind a face shield when delivering the plastic cup of pills.

Hospice teams meet every two weeks to discuss each patient, beginning with a remembrance of patients who died. A few weeks after lockdown, my team started talking about the loneliness of facility patients. While hospice patients decline over time, eating less and sleeping more, patients in facilities seemed to be wrapped in a caul of unsettling dullness. A gentleman who always delighted in a sweet, sticky honeybun, left the pastry untouched on the plate, hours into staleness. Another patient whose confused mind had been kept busy with daily group activities and meals, started wandering into other patient rooms, causing mayhem and confusion. My team was in anguish over not being able to help more with the empty sadness of moving towards death alone. A few patients contracted the virus and died quickly while others tested positive and remained asymptomatic, still trapped by the rigid confines of the pandemic rules.

One facility created a small opening, a whisper of grace. Patients on hospice were permitted one or two visitors for small blocks of time. In early June, we had two patients admitted from this facility. A few weeks later, we had two more. Then, we had three referrals in one day. Word got out that enrolling onto hospice was a way to by-pass the lock-down. Our Medical Director took a more thoughtful look at admission requests from this facility – to ensure the patients met the medical criteria for hospice eligibility. One frail, elderly resident, not on hospice, stopped eating when her daughter could no longer visit. She lost 15 pounds in a month, making her eligible for hospice. She enrolled onto service. Once her daughter could visit, she started eating again. COVID-19 restrictions took away her reason to live, hospice gave it back to her. Now, our team will provide care, tend to any symptoms of discomfort. If she recovers to where she is not hospice appropriate, then we will have to discharge her. Maybe by then, COVID-19 will have diminished and loved ones will be allowed to visit again.

I think about the facility that changed its strict visitation rules. Someone recognized that dying alone is an unacceptable travesty, that at end of life, nothing matters more than the physical presence of loved ones. As I look at COVID-19 graphs and trends, I am hopeful for a time when the coronavirus and whirling chaos come to an end, or at least become a manageable lull. For those who enter the mysterious space of life’s waning, I hope that they loosen their grip on the burden of pain and the illusion of control, that they free themselves from the trap of scheduled medications and grueling appointments. I deeply, passionately hope that they glide or tumble or even fall into being present with the ones they love.

- By Sara L. Sousa

Sara, currently performance improvement coordinator for Transitions LifeCare, wrote this post when she was an RN team leader. Sara lives in Durham, NC with her children and enjoys spreading her creative wings when time permits.

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.  

Friday, October 30, 2020

Care Dimensions Helps Young Father Meet End-of-Life Goals

Even during a public health emergency, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. Care Dimensions shares how they were able to honor the wishes of a patient while navigating the landscape of COVID-19. 

Audias Perez Escobar, 32, moved from Armenea, Guatemala, to the Boston area in 2005, striving to make a better life for himself in America. During the next 14 years, he worked hard in the construction trade, met and married his wife, Maureen, and had a beautiful daughter Amaya, now 10. 
He was living the American dream, but it wasn’t without hardship and pain. His wife died in 2016 from ongoing health issues, and he struggled to raise Amaya with the help of a large extended family. Then, in February 2020, he was diagnosed with cardiomyopathy and congestive heart failure, which made it physically challenging to work, so he moved in with his cousin, Mario Arrivillaga, to help care for Amaya.

When COVID-19 surged through Massachusetts this spring, Audias contracted it and, because of his heart disease and already weakened condition, he was admitted to Massachusetts General Hospital. As he was recovering, he was transferred to the temporary Boston Hope Medical Center, set up by the state to manage overflow COVID patients from the area’s hospitals. While there, Audias met MGH palliative care specialist Mark Stoltenberg, MD, who also works part-time with Care Dimensions.

Fluent in Spanish, Dr. Stoltenberg connected with Audias and began talking with him about his advanced heart disease and plans for end of life. Audias confided that he was anxious to return to Guatemala to be with his parents, brother and sisters, but his biggest concern was for Amaya. He wanted to give her the best future possible, and decided she needed to stay in the U.S.

“Amaya watched her mother’s health decline and die; I don’t want her to see that for me,” Audias said.

After Mario and his family agreed to adopt Amaya, they continued to work with the Massachusetts Department of Children and Families (DCF), who had been involved since Audias’s diagnosis, to make it happen.

Meanwhile, though recovered from COVID-19, Audias was very weak and symptoms of his heart disease were increasing. Dr. Stoltenberg talked to him about hospice care and how Care Dimensions could help him. Audias agreed and was admitted to home hospice in June. The hospice team worked with his MGH care team to manage his medications and symptoms with the goal of getting him strong enough to travel back to Guatemala.

In July, as Audias’ symptoms worsened, his team recommended he go to Care Dimensions’ Kaplan Family Hospice House to receive hospital-level care to manage his medications and get his symptoms under control.

“I was feeling very dizzy, so Care Dimensions changed my medicine and I feel better now,” Audias said.

As the team waited for Guatemala to reopen to receiving travelers from the U.S., Audias and his Care Dimensions social worker, Jenne Robertson, MSW, LCSW, set to expedite Amaya’s adoption.

“Collaborating with the DCF case worker, I submitted a letter of support on Audias’s behalf, citing his dying wish for his cousin Mario to adopt and care for his daughter. Thanks to DCF’s efforts, Audias was able to get an emergency, ‘virtual’ court date and, on August 17th, his cousin Mario officially adopted Amaya.”

In early September, after buzz started mounting that Guatemala's airport would soon reopen, Audias’ hospice nurse case manager, Jacob Awandem, RN, quickly scheduled a home visit with Dr. Stoltenberg, who had collaborated with the Care Dimensions team. Dr. Stoltenberg cleared him for travel and provided information on palliative medical doctors in Guatemala for his family to set up prior to his arrival.

“While Mario worked with other family members to ensure Audias’s passport was up to date, I worked on getting him a COVID test to ensure entrance to his country,” Robertson said. “I also applied for a grant from Care Dimensions’ Family Fund to assist with expenses for clothes and school supplies for Amaya.”

Then, to help ease the transition and provide additional support to Amaya and Mario’s family, Robertson introduced them to a Care Dimensions child life specialist.

“The child life team will continue to work with Amaya to help her process any grief or anxiety once Audias leaves,” Robertson said. “Through their workshops, events, Camp Stepping Stones, and now virtual support groups, they can connect Amaya to other children who have lost a loved one and provide skills and resources to Mario’s family on how to support Amaya.”

Days before Audias’s departure on September 20, Robertson slipped in one more surprise: a father-daughter photo shoot to capture precious moments and the bond they share. As he looked lovingly at his daughter, Audias said leaving his daughter was the hardest decision of his life, but he was happy to achieve his two life goals with Care Dimensions’ help: get strong enough to see his mother again and make sure his daughter’s future was secure and happy.

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.  

Thursday, October 8, 2020

Community Hospice's Faces of Caring

Even during a public health emergency, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. Community Hospice, Inc. in California shares how their team has adapted to a virtual environment while still putting patients and families first. 

As COVID-19 has impacted the Central Valley in California, Community Hospice, Inc. continues to stay focused on their mission of embracing individuals and their families facing life-changing journeys, enhancing quality of life for all.

Although the delivery of programs and services looks a little different, the focus of providing community-based palliative and hospice care to patients and families wherever they call home remains the same. To ensure the health and safety of both staff, patients and families, additional safety precautions, personal protective equipment and education has been implemented when providing care out in the community. Palliative and hospice staff continue to address the physical, emotional and spiritual care needs of patients and their families, all while addressing the everchanging uncertainty and fear of the public health crisis. 
“The pandemic has required our organization to think outside the box,” said C. DeSha McLeod, Community Hospice President/CEO. “Now more than ever, we are committed to providing the vital resources our community members need to help ease their fears and provide comfort. Our staff and volunteers have truly been inspirational and have embraced this challenging time as an opportunity for creativity and change.” 
Many services and programs have evolved by utilizing virtual platforms. Not only are clinical staff able to meet with patients virtually, grief support staff continue to provide individual and group grief support sessions through virtual platforms, allowing clients to participate from the comfort and safety of their own homes.

Community Hospice’s Speakers Bureau and educational programs have also moved to virtual platforms, engaging patients, families and community participants through creative videos, lunch and learns and lecture as they gain insight and valuable resources on wide variety of topics. Positive Vibes, a new video series created by volunteers, launched in April and is released each Friday morning on the Community Hospice website, YouTube channel and Facebook page @CommunityHospiceCV. The video series shares fun and easy to create activities and encouraging messages for the entire family. Other virtual programs and events offered include a Candlelight Vigil honoring hospice and partnering frontline health care heroes and those affected by COVID-19, our annual Clergy Forum, Stronger Together campaign, Coping with the Holidays, fundraising events and more. 

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.  

Friday, September 25, 2020

Regional Hospice's Creative Approach to Advance Care Planning

Even during a public health crisis, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. It’s especially important now for people to consider their health care wishes. Regional Hospice has a creative way to help broach the topic.  

As the country continues to face the impact of COVID-19, it’s important for everyone to consider their health care wishes should they have a serious illness – and communicate those wishes with their loved ones.

Regional Hospice of Danbury, Connecticut has launched a new spot in their long-term campaign, Making the Best of Every Day, to address the important topic of advance care planning in a more comfortable and approachable platform. “Not Fred!”, a 30-second animated commercial, is the fourth in an award-winning series tackling end-of-life choices and making the best of every day. 

Written by Marvin Waldman, former Executive Creative Director at Young & Rubicam, and animated by J. J. Sedelmaier, the segment delicately approaches losing a partner through a light, but sincere, exchange about who a wife should date after her husband’s death. 

“Stories that use humor, and situations everyone can relate to, open the door to talking about death in a less intimidating way,” says Cynthia Emiry Roy, MS, LCSW, CHA, President & CEO of Regional Hospice, “They start the discussion.”

“Not Fred!” takes a sweet and relatable approach to a subject that many find difficult to discuss. While they are animated, these faces of caring are helping the community members start the conversation with their loved ones. 

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.  


Friday, September 18, 2020

UC Davis Hospice: Bringing Comfort and Smiles to Hospice Patients During COVID-19

Even during a public health crisis, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. UC Davis Hospice shares how their outreach to the community led to new resources and comforting, personal touches for their patients. 

When COVID-19 precautions shut down our in-person volunteer program, UC Davis Hospice began looking for creative ways to provide comfort and smiles to our patients. With our hospice volunteers busy making cards and offering telephonic support to patients, we expanded our reach to the community to offer ways they could help support UC Davis Hospice. The response we have received from the community has been truly amazing.

Erin Bjork, Hospice Volunteer Coordinator and mom of two teenagers, knew that many high school students needed virtual ways to fulfill community service hours during this time of COVID-19 restrictions. After reaching out to several local high schools, over 20 students responded wanting to help. The students quickly got to work making cloth face masks, homemade cards, care packages of comfort items, COVID-19 safety kits, and fleece tie blankets. Our patients have been so grateful and touched to receive these items from our local teens. Andrew Condrin, a high school senior who made fleece tie blankets and care packages, said “I didn’t know much about hospice care at first, but during my project, I learned how hospice helps give patients a peaceful death. I’m glad I could donate to a good cause that comforts people during the end of their lives.” 

High school students delivering care packages

By further networking within the Sacramento community and on, UC Davis Hospice has received donations of fidget blankets for dementia patients, custom bracelets with inspirational sayings, and cloth face masks. An organization called Alice’s Embrace reached out at the beginning of the pandemic to offer beautiful, hand-knit blankets for our hospice patients. We have given out more than 60 Alice’s Embrace blankets to our patients, who have been so grateful to receive these handmade gifts.

Social worker Tiffany delivering Alice’s Embrace blankets

A community member also donated several handmade hospital gowns in beautiful patterns and colors for our hospice patients. “Patients and families love the gowns!” said Tiffany Pulsipher, hospice social worker. “We had a patient who did not want to be in anything else during her time here. This is such a great way to both keep the patients comfortable and to allow the family to have something very special and personal to take home. The gowns and Alice’s Embrace blankets are an important touch that inpatient hospice can provide.”

Another special touch that UC Davis provides is through our partnership with The Petal Connection. The Petal Connection donates lovely floral bouquets twice per month to UC Davis Hospice. The staff love the smiles and joy that these flowers bring to the hospice patients. 

Petal Connection flowers being delivered to UC Davis Hospice

In the middle of the pandemic, hospice nurse Deborah Watson earned the prestigious Daisy Award for Extraordinary Nurses for her development of the inpatient hospice program, becoming the face of compassion and caring for this new program. Our inpatient hospice team has created “caring bags” filled with goodies and snacks for those on inpatient hospice. Plans are in the works to expand our caring bag offerings to include personal care items, which will help families who are staying in the hospital around the clock to be with their loved ones. The inpatient team will also be launching a handprint project for our patients, providing families with a framed handprint to keep as a memento when their loved one passes.

The engagement and enthusiasm from our staff and community members have been truly inspiring during the pandemic. We are excited to find new ways to further support our patients!

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.  


Thursday, September 10, 2020

Gilchrist's Many Faces of Caring

Even during a public health crisis, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. Gilchrist shares how the many members of their interdisciplinary team support each other and their community in times of need. 

The way our teams at Gilchrist deliver care is much different today than a few months ago. There are fewer in-person visits and more virtual ones, and those used to offering a hug or a comforting touch must offer only words instead. 

In addition to their usual care, our staff now have the added responsibility of addressing families’ fear and uncertainty. The work is difficult, but they are pushing past the challenges to do what they are trained to do. Here are just a few of our many Faces of Caring.

Palliative Care for COVID+ Patients
Since March, our palliative care nurse practitioners have been working day in and day out with the COVID-positive nursing home population. They help the residents and their families cope with the illness and the associated losses, as well as their symptoms. They also facilitate difficult and often sad conversations, ultimately helping patients set their goals of care and weigh their medical decisions.

Pictured: Nurse practitioners Tracie Morgan, Amanda Wiese and Esther Schaftel 

Hospice for COVID+ Patients 
Our nurses are continuing to provide vital hospice care to patients and families in their homes, including those with COVID-19. To ensure the safety of both the clinician and the family, a “safety buddy” accompanies each nurse visiting a COVID-19 patient. The safety buddy nurse helps ensure safe and correct donning and doffing of the other nurses’ PPE. 
Pictured: Hospice nurses Delores Williams and Erica D'Alesandro

Inpatient COVID Unit
In addition, Gilchrist opened the only COVID-19 dedicated inpatient hospice unit in Maryland, providing patients with an alternative to a hospital death. This allows patients to die with a loved one by their side while our teams care for their medical, emotional and spiritual needs.

“We are here because our patients need us, and because we made a promise, as nurses, to show up in their time of greatest need,” said Kristin Metzger, a hospice nurse on the unit.
Pictured: Hospice nurses Kristin Metzger and Oksana Horwitz

Hope Through Music
Although the COVID pandemic brings much anxiety, uncertainty, fear and confusion, for some, it offers unexpected opportunities. For one Gilchrist Kids family, music therapy helped two sisters bond with one another and create a unique "soundtrack." While isolated at home after schools closed, big sister Sarah became a regular part of her sister Amanda's music therapy sessions. And so, with the help of the music therapist (and mom and dad), these two sisters recorded favorite songs, piano improvisations, and original music written about everyday life. Now, they will have a memory of 2020 that is filled with love, hope and joy.
Pictured: Pediatric hospice patient Amanda Gonzales with sister, Sarah, and music therapist Lacy Kidwell

Virtual Grief Counseling
Like every other team, grief counselors have shifted to offering virtual services, including grief telehealth by phone or video. They also have organized online virtual support groups and created a Facebook group designed to offer education, support and reassurance to bereaved as they mourn and heal. 

Our grief counselors have found that people need grief services now more than ever. “Grief can be very isolating,” explained grief counselor Carol Hallinan. “Add a pandemic and you have a lot of loneliness. Like most of the world, our counselors have been able to adapt so we can continue to support our bereaved who are now struggling with many kinds of loss. Sometimes, just providing presence for those in mourning, even virtually, can go a long way in the healing process.”
Pictured: Grief counselor Carol Hallinan

Determined to Rise Above
The pandemic has brought out the best in people determined to rise above. Team members have stepped up to overcome challenges they never had to face before. Social worker Kerry Riggs sums up the collective feeling of many at Gilchrist: “Working on the emotional frontlines for families of patients, this has been some of the most challenging, exhausting and also rewarding work of my 24-year career,” she said. “I can't wait until the time when I can offer a comforting touch or hug to our patients and their 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.  


Friday, September 4, 2020

Repaying the Favor: Recognizing a Veteran Volunteer

Even during a public health crisis, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. Heart 'n Home Hospice shares how they were able to safely and respectfully honor one of their Veteran patients, who was also one of their Veteran volunteers. 

On a beautiful summer morning, surrounded by the pine trees of La Pine, Oregon, we had the great
pleasure to honor local Veteran Dan Henry for his service to our country. Dan was a bagpiper for the Oregon Army National Guard for 9 years. Dan, deservingly, is very proud of serving his country through the Army National Guard.

Dan was recognized in a Veteran Pinning Ceremony presented by the Heart ‘n Home Hospice team. Not only is Dan a patient with Heart ‘n Home, but for many years he was a Heart ‘n Home Volunteer through the local Band of Brothers chapter. Together with the Band of Brothers, which is a local Veteran organization, Heart ‘n Home works towards honoring all Veterans in the community.

Taking this time to recognize Dan, in this special ceremony, was made more meaningful because of his previous involvement in recognizing other Veterans. Dan, as a member of the Band of Brothers and a Volunteer with Heart ‘n Home, has helped at numerous Veteran Pinnings. He also proudly volunteered to serve in his community before he became ill. Because he has given so much of his time in service of others, it was a pleasure to take this time to honor him.

Decked out in his full kilt and uniform, Dan stood proud for a photo. “Not only does Dan have stories about his time in the Guard and as a local firefighter, but his uniform itself tells a proud story of service, honor, and loyalty,” Heart ‘n Home Care Navigator Mandy Putzier said. For example, the kilt he dons is his family tartan, and the bear hackle on his hat was awarded by the Clan Buchanan of Willamette Valley Bagpipe Association due to his abilities as a bagpipe player.

Dan’s family attended the ceremony which honored his service. Unfortunately, with COVID-19 restrictions his fellow Volunteers and Band of Brothers were unable to attend, but we’re sure they would have if possible.

With each part of his uniform in place, Dan humbly accepted a card from the whole hospice team and a certificate is presented to him. Along with the certificate, an American flag pin was pinned to his lapel by Mandy. He was comforted by his RN, Case Manager Billy, and his daughter Jennifer as he shed tears of honor. Heart ‘n Home employees Russell, Elizabeth, and Billy also took part in the presentation. Then, Dan stood with Executive Director Diana and saluted the flag.

Two patriotic pillowcases were also presented to Dan. They were sewn with care by Mandy. Many people in the La Pine area have a great love for quilting and sewing. These pillowcases not only provide comfortable place to lay his head, but will serve as a daily reminder of our appreciation of Dan’s service.

Heart ‘n Home proudly honors not only our Veteran patients, but all Veterans. It was truly our pleasure to recognize someone so dear to us. Dan has done his part to recognize many other Veterans, we were happy to return the favor.

“Dan is pretty special to our team so it means a lot to us that we can do this for him,” Mandy said. “A picture can tell a thousand words…and in Dan’s case the picture of him in his kilt receiving his Veteran certificate, presented by his Heart ‘n Home care team, surrounded by his family tells a lifetime of stories.”


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.