Friday, March 19, 2021

Hospice Social Work: A Calling that Satisfies

Even during a public health emergency, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. In observance of Social Work Month, two Care Dimensions social workers, Jennifer Sheng and Jackie Butler, discuss what attracted them to their profession, lessons learned, and what they’ve found fulfilling about hospice social work – even amidst the pandemic.

Why did you become a hospice social worker?

Jennifer Sheng - Ever since I was young, I wanted to be a therapist. I had an initial interest in
Social Worker Jennifer Sheng meets with a patient
(photo taken before COVID-19 pandemic)
psychology, but I was drawn to social work for its holistic approach to care. This became clear to me when working in a residential psychiatry unit where the focus was on treating people as people, instead of seeing them as “ill” or “sick.”

Growing up, I spent a lot of time with my grandparents and as a result, I was raised with a deep respect and appreciation for my elders. Not only did they teach me how to bowl and play bridge, but I enjoyed hearing about their greatest triumphs, deepest sorrows, and especially how those experiences culminated into the amazing people I loved. I saw that getting older was something to be cherished.

Once I decided to pursue my master’s degree in social work, I knew I wanted a career that combined physical and mental well-being. My school offered a dual certificate program in gerontology and behavioral medicine, and hospice was a natural fit.

Jackie Butler - I’ve always loved talking and connecting with people, learning about who they are and hearing their stories. This curiosity made social work a great fit for me. I’ve also found issues of death and dying interesting. I’ve wondered how psych-social and spiritual factors can have such an important impact on someone’s end-of-life journey. Being a caretaker for my mother who suffered with a very slow progressing form of ALS solidified my desire to help patients and families navigate the challenges of living with life-limiting illness.

What are some lessons you’ve learned as a hospice social worker?

Jennifer - I’ve learned that there is no “correct” end-of-life experience. I’ve been with hundreds of patients and their families through that journey, and each of them have been as unique as the individuals themselves. Some patients want to be at home surrounded by family, others feel comforted by the sounds of a hospital setting, and everything in between. It’s our job to listen to their values and needs and help guide them toward a desired outcome.

Jackie - Under the best of circumstances, dealing with life-limiting illness in whatever phase a patient and family are moving through can be emotionally daunting and filled with difficulty. Navigating this end-of-life journey during the COVID-19 pandemic has brought increased isolation and loneliness. In a time when they need to access extra support, their ability to connect and feel supported is limited. Many of our families have not been able to visit with a patient who was in a long-term care facility or hospital. The past year has brought a different kind of grief as families learn new ways of celebrating the life of a loved one, when traditional customs designed to help bring comfort and support are no longer possible. As social workers, we help by naming the frustration and concerns while compassionately listening and supporting. We offer normalization, validation and reassurance to our patients and families. We can’t take away their pain, but we can support them and hold this space while they process difficult and intense feelings.

What do you find fulfilling about hospice social work?

Jennifer - Easily, it is the time I spend with my patients and their loved ones. I’m so humbled when a family lets me into their home at such a vulnerable time, especially during the COVID-19 pandemic. That takes a large amount of trust, and I strive to give that the respect it deserves. I especially enjoy getting to know each of my clients and what they hope for. Together, with the whole care team, we can usually bring that hope to reality. Death will happen to 100% of us – we don’t get a choice in that. What we do get a choice in is how we spend those last months, weeks, and days. There’s a lot of hope in that. There’s a lot of love in that. I feel so honored to help my patients understand this and have the life they want.

Jackie - One of the best aspects of this job is working with an amazing interdisciplinary team. Having multiple disciplines all working together and each bringing their unique perspective enhances our understanding of patients and families. Essentially, we all help them define their goals to determine what’s needed or important for them to make the most of whatever time they have left. The focus really becomes about living with the best quality of life, which I find so fulfilling.

What’s one of your favorite memories with a patient?

Jennifer - Recently, I had a patient who hoped to go to Encore, the new Boston-area casino, but the risk of contracting COVID-19 was too high. Instead of taking him to the casino, we brought the casino to him! His hospice nurse and I brought appetizers, decorations, cards, chips, and a craps table. Only problem was that we had overlooked the minor detail that neither she nor I knew how to play craps! I watched hours of YouTube tutorials before calling for mercy, but we forged ahead anyway. We surprised John with the event, and he surprised us by teaching us all how to play craps. He was able to win big that night and redeem his chips for a prize we arranged for him. I’ll always remember the big smile on his face as he taught us how to play the game, and the gentle way he and his family cheered each other on. It was really such a privilege to be a part of that. As corny as it sounds, that’s the part of my job I love the most – making dreams come true.

Jackie - We had a patient come into the Care Dimensions Hospice House transitioning to end of life. I’ll call her Anna. She was developmentally disabled, minimally responsive, and unable to make her needs known. Anna had a case worker through the Department of Developmental Services and an adult daycare manager who were very fond of her, but unable to visit due their own agencies’ COVID-19 limitations. In speaking with these caregivers over the phone, I learned Anna loved to dance and listen to “Island Music.” At work, when she heard this music she would laugh, sing, and dance. I was told her smile was infectious when the music came on. I sat bedside, held her hand and played music from her favorite band. When I drove home that night, I had a smile on my face. Such a small detail, but one that I felt such satisfaction in believing it brought Anna comfort in her last days.

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

Wednesday, March 3, 2021

Honoring Patient Choice and Organ Donation

By Natalie McNeal, Wellstar Community Hospice, and
Kim Kottemann, LifeLink Foundation

Honoring patient choices means that we must offer options to our patients and look beyond our current service offerings while operating within legal, compliance, and regulatory boundaries.  More than ever, medical providers are focusing on patient preferences and needs, and hospice can be a solution.  Goals of care do not have to be mutually exclusive because they have not been paired with hospice services in the past.  Instead, we must consider how hospice can complement the continuum of care.  
In 2016, our team was asked a simple question, “Why can’t we use hospice with patients who want to donate vital organs?”  This led our team on a patient experience journey and an otherwise unlikely partnership with our state’s organ procurement organization.  Until hospice providers begin to seek understanding of service lines we thought were mutually exclusive to hospice, we will not be able to provide an exhaustive array of options for those who can truly benefit from hospice services. Good goals of care should include all end-of-life options for patients and families.   
In a report from the National Academies of Sciences, Engineering, Medicine, researchers write, "In recent years, many initiatives to increase the rates of organ donation have been undertaken. Several of these efforts are early in their implementation phases and have not yet been fully evaluated. Although organ donation rates have risen in the past 5 years, it is difficult, if not impossible, to determine exactly how much each initiative or regulatory change has contributed to that rise. Taken together, the data suggest that a multipronged approach is necessary to realize the potential of organ donation in the United States."*
For those who are participating in NHPCO's 2021 Leadership and Advocacy Conference, we invite you to join us for our presentation on Concurrent Use of Hospice and Organ Donation in Acute Care to learn how we vetted this expansion of our service and applied an ethical framework to guide our decision to include organ procurement as a choice for a subset of our patients.  Honoring a patient’s wish to pursue the gift of life after their death has inspired our team to effectively utilize our expertise for a population we did not previously serve.

*"4 Systems To Support Organ Donation." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.


Friday, February 26, 2021

Spreading Love with Valentine’s Day Cards

Even during a public health emergency, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. Katie Sue Van Valkenburg of Namaste Home Health and Hospice in Denver, CO shares how a Valentine’s Day idea grew to have a huge impact in the community.

January, 2021 – It's been nearly a year into life amidst COVID-19, and people around the country are frustrated, lonely, and craving connection. And while people are eager to commune in person, there are still many fears revolving around the risk of offering that face-to-face interaction. One activity still safe for all? Old school letter writing. And who doesn't love getting a Valentine's Day card? 

What started as a hope to collect a few cards for notably isolated hospice patients for Valentine's Day quickly grew to an incredible 650+ cards collected by Namaste Home Health and Hospice of Denver, Colorado. Between Facebook posts, viral photos, and word of mouth, cards started pouring in from all across the country, and even Canada!

Cards came from 18 different states, Washington, D.C., and two provinces of Canada. Many cards were created by families looking for a fun activity to complete with kids, others came from adults taking an emotional leadership class, and even more came from artists using the cards as their canvas. 

With the sheer number of cards, Namaste Hospice created gift baskets for eleven different skilled nursing homes and assisted living facilities in the Denver metro area. Within the basket were enough cards for every single resident of the facility to get some Valentine's Day love via a handmade card. Reports from the facilities including glowing reviews from the residents, with exclamations of joy whilst reading their personal note from strangers across the nation. 

In addition to offering endless amounts of love to hundreds of humans living in facilities, families and teachers found the project to be a teaching opportunity. Many students had not heard of hospice before, meaning the project allowed kids as young as three years old glimpses into the lives of those living in facilities and the care provided by hospice teams. 

Namaste Hospice is grateful for the support of the community and hopes to create an annual tradition of card collections. 

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

Friday, January 29, 2021

The Power of Forgiveness at End of Life

Care Dimensions chaplain Rev. Donna Spencer Collins, M.Div. shares her experience witnessing the importance of forgiveness and peace at the end of life -- both for the person doing the forgiving and the person who is being forgiven.  

On the wall in my living room hangs a banner with this quote:

“If we have no peace, it is because we have forgotten that we belong to each other.”- Mother Teresa

Through a series of unfortunate circumstances, my niece and nephew came to live with us. And not long after, their father was diagnosed with cancer. I had known Steve for 20 years and believed he had done many unforgivable things. Nevertheless, he was homeless with terminal cancer. Although he fell short, he loved his kids. Inviting him to stay with us was the right thing to do.

A few nights before he came, I sat in my living room after everyone had gone to bed and wondered if I was making a big mistake. While I wrestled with the decision, Mother Teresa’s words challenged me. The kids – 11 and 15 years old – and their dad belonged to each other, and we needed to figure out how to bring peace.
Anger, then trust
Steve moved in and hated that he had to do this. He was very angry that he was sick. He was angry that he had to come live with us when he did not like us. But the biggest issue he was angry about was that his secret was out in the open, having come to the U.S. illegally in 1973. Because of this, he did not qualify for many medical services. Nevertheless, Hospice of the North Shore (now Care Dimensions) treated this man with compassion and respect. It took him time to trust his hospice team, but the caring and resources he received began to change his demeanor.

A few months after living with us, Steve came into the kitchen and told me that we needed to talk. He said, “You know that banner in the living room facing my bed? I read it every night. And lately I have been wondering about my friend ‘Mario’ (not his real name). We had a big fight a few years ago and have not spoken since. He is like my brother and I realize not forgiving him has kept me away from him. I have no peace because I forgot he belongs to me.”

As Steve spoke, he wept openly and shared the story of their separation. A few days later he decided to go see Mario, who owned a small grocery store. He returned with two big bags of groceries. Smiling from ear to ear, he shouted, “We belong to each other again!”
Forgiveness leads to peace

Steve lived with us for 10 months before he passed peacefully surrounded by love. A love that was free to behold because he remembered – then we remembered – that we belonged to each other.

Forgiveness is the pathway to peace and belonging. Steve found his way to peace and belonging by unknowingly meditating on a few simple words.

Forgiveness is not given because someone deserves it. It is given because the offended person is ready to forgive.

Forgiveness is my letting go of my need to punish someone else and my desire to stop carrying around the hurt and anger someone caused me.

I am convinced that forgiveness at end of life can bring healing to the person who is doing the forgiving and to the person who is being forgiven. It can also impact the family and relationships beyond the family circle. Forgiveness demonstrates a precious model to those who are watching how we die.

About the author
Rev. Donna Spencer Collins, M.Div., is Pastor of the Phoenix Rising United Church of Christ in Groveland, MA, and a chaplain with Care Dimensions.

Friday, January 22, 2021

Heart ‘n Home Volunteers Help Fulfill Janice’s Wish

Even during a public health emergency, hospice and palliative care professionals rise to the challenge of providing compassionate, person-centered care in the community. Heart ‘n Home Hospice shares how dedicated volunteers fulfilled a special wish for a patient. 

“Janice Schroeder started doing needlework when she was young. She worked with her grandma, making samplers when she was 12 years old. As time went on, she learned to knit, crochet, and do needlepoint. She believes a person’s hands should be busy. Even now as an 89-year-old, who has trouble seeing and is unable to remember how to “cast on” for knitting, she still fidgets with something in her hands, sometimes just her blanket, but always something,” Janice’s daughter Sue Richard shares.

Sue continues, “She began the Jungle Needlepoint project about 10 years ago. Janice has never done anything halfheartedly, so she purchased the expensive kit, had a needlework table made, and began her project. There was no way Janice could foresee her husband’s need for her constant attention was coming. Her husband, LeRoy, had a degenerative eye disease, as well as other health issues. He passed away, at 97 years old, after 40 years of marriage to Janice, in July 2019. Although she had a few years of working on the project, she just hasn’t been able to find the energy to start on it again.

This needlepoint project has made many moves and has been in Janice’s mind, but still, her body just was not able to continue it. Now, the wonderful Volunteers at Heart ‘n Home have taken on this massive project and have already put countless hours into it. Janice would love to see the project finished before her time is up, but she understands what a big challenge it is to find the time to work on something so time-consuming.”

In September, Janice was able to see the progress being made on the project.

Since then, the faithful Heart ‘n Home Volunteers, have completed her project. Volunteer Jan put in 50 hours of work then passed the project on.

Volunteer LaDonna took over the project and completed it, putting in 150 hours. These two ladies made over 71,000 stitches and put in 200 hours that fulfilled Janice’s wish to have this needlepoint completed so that it could be enjoyed by others.

Once it was completed, Janice’s daughter, Sue, was able to deliver the needlepoint to her mother. Janice was thrilled to see the piece finished. She reminisced about how she bought the kit from a “beautiful shop” in Newport, Oregon. She chose the piece because she liked the birds on it. Sue is going to hang the needlepoint in her mother’s room to enjoy.

Janice’s family is very, very grateful to the volunteers for taking on the needlepoint project, and they appreciate every single person who has put their hearts and souls into it. This is going to be a wonderful heirloom for Janice’s family. Thank you LaDonna and Jan!

You can watch Sue deliver the finished piece to her mother. 

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.  

Tuesday, January 12, 2021

Still Time to Order a 2021 NHPCO Webinar Package

Have your educational calendar set for the year!

NHPCO’s 2021 webinars bring you and your staff professional development and education from nationally recognized speakers presenting on the most relevant topics for the field. Invest in your staff and purchase a package today and have your education calendar set for the whole year.  NHPCO webinars are a cost-effective way to maximize learning within your organization.

2021 Topic Tracks

  • Community-Based Palliative Care
  • Clinical
  • Interdisciplinary Team
  • Quality
  • Regulatory and Compliance
  • Supportive Care.

Two webinars are offered each month and the topics are developed with input from providers and our subject matter experts. Titles are currently available for the first half of the year and remaining will be determined based on needs from the field at that time. Being responsive to provider needs and the realities of the current environment is always the goal of our webinars. CE/CME credit is available and may vary depending on webinar topic.

The calendar of 2021 webinars is available online.

All webinars are live from 2:00 to 3:00 p.m., ET or enjoy the recording when it works best for your schedule.

Build Your Library

Add to your organization’s or your individual professional library, a recording of each webinar is included with your webinar purchase giving you or your staff the opportunity to listen to the valuable presentations after the original webinar (please note, CE/CME is only available for participation in the live webinar broadcast and not for those who listen to the recording).

Webinar Pricing and Packages

Included with each webinar purchase is two logins for each webinar and the MP4 recording.

  • 24-Webinar Package:  $999 for members; non-member price is $4,499.
  • Single Track Package (4 webinars):  $175 for members; non-member price is $750.
  • Single Webinars:  $49 for members; non-member price is $199.

Order a 2021 Package Today

For webinar details or to register, visit the webinar section of the NHPCO website.

Tuesday, December 29, 2020

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. 


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.