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.  

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.