Dr. Powell reflects on all she has seen and the significance of vaccination

Casa de la Luz Associate Medical Director Dr. Rebecca Powell, HMDC received the COVID-19 vaccine and wrote the following to describe the joy, hope and sense of peace that it brought.

As I drive home from my COVID vaccine I’ve finally had a minute to process what this means.

The first time I gowned in my PPE to walk into a patients room dying of COVID it felt unreal. Since that time many months ago, I’ve seen the unthinkable happen as this disease has wreaked havoc on society. I’ve seen death after death, both from COVID and from the isolation it has brought to our community. I’ve seen how hard people have to work to breathe before they take their last breath. I’ve stood in a patient’s room for a few extra minutes as they approach death – I just couldn’t let them die alone. 

 

I’ve also heard arguments as to why the horrors from COVID are fake. I’ve had my patience tested far greater than it has before. I’ve had so many people ask me about whether or not they should get the vaccine it would make your head spin. I’ve had friends and family turn to Dr. Google and try to peddle me their findings. And I’ll be honest, I’ve been pushed to my absolute limit at times. 

 

Today I sit with tears in my eyes and with gratitude in my heart that I’m one step closer to keeping my family safe. I’m a few days away from developing immunity, which will essentially serve as PPE that can’t be accidentally contaminated. I won’t have to worry as much about being the cause of anyone dying from a preventable disease. 

 

I finally see light at the end of a long stretch of darkness. Today I stand grateful for my friends and colleagues who’ve gone into these rooms with me. So many of you reading this have sacrificed so much to put the health and safety of others first. I’m thrilled to be joining the ranks of those who proudly post “I’m vaccinated” pictures. It’s almost over. 

 

Now I can continue to care for you and your family – to help them breathe easier or to sit with them for a little bit longer – but I get to do with less fear and less distraction. Because I’m finally vaccinated. I’m so happy. 

 

So if you want to know my opinion on getting vaccinated: ANYONE and EVERYONE who is eligible should get the vaccine. Could there be side effects? Sure, but nothing is as bad as this horrible disease that is destroying our country. There are likely long term effects of that too. This vaccine has the potential to save millions of lives – our friends and family, our colleagues, maybe even our own. 

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If you would like to share your experience amid the COVID-19 crisis or receiving the vaccine, please send us your photos and stories so you can be featured in the #hapcFacesOfCaring campaign.  

 

Becky's Vaccine Story

NHPCO is pleased to share this piece written by Becky Wilder, volunteer coordinator for Uplifted Care in Bourbonnais, IL. Becky wrote this piece on Thursday, December 17, the day she received her COVID-19 vaccine.

In June of this year, I lost the first person dear to me as a direct result of COVID. 

In August, I lost the second friend to it.

Yesterday, I lost the third -- a very dear friend. No, he was more than a friend, he was family. He was my brother's best friend, my mentor and friend, and my brother from another mother. After several days on a vent, he succumbed yesterday, two days after his 69th birthday.

I've watched so many loved ones who have family in long term care and have been separated from them for months -- unable to hug them, unable to sit with them, unable to just be present. Some of those family members have died alone. On a professional level, as one who manages our 11th Hour program, that's hard for me to hear. As a daughter whose mother died at home in September from natural causes, I cannot fathom having missed her final hours. Thinking of it breaks my heart for those who have had no choice.

I've watched my coworkers for MONTHS putting on layers of PPE, masks, shields, etc. I've watched their weariness, their sadness, their sacrifice. I've heard their stories of going home at night with their faces so red and irritated from the masks that they barely recognize themselves. I've heard them speak of sleeping away from and steering clear overall of their spouses and children to avoid risking exposing someone they love.

This virus is very, very real, and I want to do what I can to respect what so many are going through, and try to not be a catalyst for anyone else getting it. There's a lot of layers to the heartache this virus has caused. So when we got word at work earlier today that one of the local hospitals was giving us the opportunity to get the COVID-19 vaccine, it wasn't even a question. I signed up as soon as we were able, and I got my vaccine at 2:55 p.m. today. It wasn't painful at all. As I sit here now, it is 3:56 p.m. I feel just fine. Like any vaccine I would expect mild symptoms as it gets into my system, but we will see. Still, those symptoms are NOTHING compared to what so many others have been through - and what so many have lost this year as a result of COVID. This is the least I can do.

My hope is that soon the vaccine will be widely available, and that it will be the long, desperately prayed for solution to this pandemic nightmare. I pray that it will protect as it is intended to do, and that no one else will have to be sick with (or die from) this horrible virus.

If you would like to share your experience amid the COVID-19 crisis or receiving the vaccine, please send us your photos and stories so you can be featured in the #hapcFacesOfCaring campaign.  

Heart ‘n Home Hospice Video Series: “Hope for the Holidays”

Even during a public health emergency, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. Kandice Dickinson, Director of Public Relations for Heart ‘n Home Hospice, shares a creative way they met their community’s need for grief support.

Hospice providers are experts in grief and bereavement, and we believe we can be of greater support on a grander scale to many. We realize that with today’s COVID crisis, every person in the world has experienced form of grief – whether that is loss of life, a job, normal routines, and much more.

We recorded our six-part video series with our social workers called “Hope for the Holidays” for all those who have lost someone – especially the medical field professionals, who have lost so many patients to COVID. We hope to shine a light again on how hospice professionals are experts in bereavement and grief and can be a resource to all during this pandemic. We want to help. They can all be found on our YouTube page at www.youtube.com/user/gohospice.

“The holidays are a difficult time for many people and layered with the COVID-19 pandemic, the emotional stress is at a level that none of us can truly imagine.  Due to the restrictions for infection prevention, we wanted to be able to reach individuals who were grieving and struggling in their living rooms or wherever they may be virtually,” said Felicia Comfort, CSWA, social worker at Heart ‘n Home Hospice.

The videos provide coping skills and strategies, and they give people permission to grieve and create new traditions.

“Normally, people are able to be together to grieve and we know this year is very different. We wanted individuals who may be suffering, to know they are not alone and there are ways to help them cope during this holiday season. Our hope would be that they would not feel alone and normalize their feelings,” Felicia said.

At Heart ‘n Home, we are always seeking new and innovative ways to be a definitive leader in hospice care. The creation of a recorded Hope for the Holidays series that would be accessible to everyone is another way to get creative and innovative in a very difficult time.

“My inspiration came from the phrase, ‘Necessity is the mother of invention.’ It is a necessity to deliver services to our communities and given the current environment we are in, this seemed like one innovative way to do so,” said Mandy Putzier, social worker at Heart ‘n Home Hospice.

“My hope is that we can reach people who we are unable to reach due to COVID. But even bigger than COVID is the idea that many people would benefit from this type of support outside of a pandemic. There are many different ways people grieve, so I believe there should be many different ways people have access to grief support. My hope is this will help people now and into the future,” Mandy continued. 

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.  

Hospice and Palliative Care Month Resolution

NHPCO's blog shares a press release from the office of Senator Jacky Rosen.

For Immediate Release: December 3, 2020

Rosen Introduces Bipartisan Resolution Designating November as National Hospice and Palliative Care Month, Resolution Passes Senate

WASHINGTON, D.C. – Today, U.S. Senator Jacky Rosen (D-NV), a member of the Senate Committee on Health, Education, Labor and Pensions (HELP) and the Special Committee on Aging and a co-chair of the Comprehensive Care Caucus, announced her introduction of a bipartisan resolution to honor November as Hospice and Palliative Care Month. The resolution also unanimously passed the U.S. Senate last night. Fellow caucus co-chairs Senators John Barrasso (R-WY), Tammy Baldwin (D-WI), and Deb Fischer (R-NE) are original co-sponsors of this resolution. Observed in November, National Hospice and Palliative Care Month is a time to honor the vital services that hospice and palliative care organizations provide to patients and their families facing serious illnesses and injuries:

“As someone who stepped back from my career to take care of my parents and in-laws as they got older and started to have serious health problems, I understand just how important it is for patients and families to have access to care that is compassionate and comprehensive,” said Senator Rosen. “We know that palliative care helps meet patient needs, and by observing National Hospice and Palliative Care Month, we will be able to give this very real issue the attention that it deserves. I am proud to be joined by my Comprehensive Care Caucus co-chairs to introduce this bipartisan resolution recognizing the importance of palliative care for patients, families, friends, and caregivers.”

BACKGROUND:  Last June, Rosen introduced the bipartisan Provider Training in Palliative Care Act (S.1921) with Senator Lisa Murkowski (R-AK). This legislation would update the National Health Service Corps program to include palliative care medicine as an eligible primary care service.

 Last July, Senators Rosen, Barrasso, Baldwin, and Fischer launched the bipartisan Comprehensive Care Caucus to raise the public’s awareness and promote the availability and benefits of palliative care, while also finding bipartisan solutions to expand access to palliative care services, improve coordinated care, and address issues impacting caregivers. The Caucus’ mission is to work to enhance access to palliative care services and improve the quality of life of millions of Americans managing serious illnesses.

This resolution (S.Res.783) is endorsed by the National Hospice and Palliative Care Organization (NHPCO), the Coalition to Transform Advanced Care (C-TAC), and the National Partnership for Healthcare and Hospice Innovation.

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In response to this resolution passed by the U.S. Senate, NHPCO President and CEO Edo Banach stated: 

“We thank Senator Rosen for spearheading this resolution passed by the U.S. Senate that recognizes the critically important work done our nation’s hospice and palliative care provider community. President Ronald Reagan first recognized November as National Hospice Month over forty years ago and it’s heartening to see national recognition continue. Hospices have traditionally marked November as a time to celebrate their staff and volunteers and to engage with the communities they serve to increase awareness. It means a great deal to our entire provider community to have this validation of our work from the Senate.”

Giving Tuesday is December 1

Non-profit organizations across the globe are marking “Giving Tuesday” on December 1, 2020.  Following the initial holiday weekend marked by Thanksgiving, which has evolved to include “Black Friday” and “Cyber Monday” – two of the biggest shopping days in the country – “Giving Tuesday” was established to add an important note of philanthropy to the holiday.

In this season of generosity, the National Hospice Foundation wants to thank the many supportive donors who have helped our work continue during COVID-19, including grants for PPE, helping patients have a special experience, creating resources to support diversity and inclusion, and helping hospices provide Veteran-centric care.

Today, NHF is joining other nonprofits across the world to recognize “Giving Tuesday,” now a global day of generosity. To support our work, make a donation online.

Thank you for being part of our community.

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.

COVID-19

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.  

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.