To help address complex trauma resulting from the COVID-19 pandemic, five leading organizations are collaborating to offer free innovative resources for frontline providers on grief education. The Hospice and Palliative Nurses Foundation (HPNF), the Hospice and Palliative Nurses Association (HPNA), the Social Work Hospice and Palliative Care Network (SWHPN), the Association of Professional Chaplains (APC), and the Oncology Nursing Society (ONS) have received a grant from the American Nurses Foundation (ANF) to produce Dealing with GRIEF: A Series of 5 Short, Powerful Videos.

Caring for the physical, emotional, psychological, and spiritual needs of patients and their families is a demanding vocation in typical times, and this initiative aims to provide timely and practical information during an unprecedented time. Research has also shown that a significant number of frontline providers, at all levels, exhibit secondary traumatic stress, bereavement, compassion fatigue, and burnout.

On December 27, 2020, H.R. 133, the Consolidated Appropriations Act, 2021 became public law. This 5,593-page year-end legislative package included a policy provision which should be of interest to hospice and palliative care social workers. Part of the “Helping Our Senior Population in Comfort Environments Act”, also known as the HOSPICE Act H.R. 5821, is a requirement for survey and enforcement procedures to improve consistency and oversight for hospice programs. 

Federal oversight of hospice programs is not a new development. The Hospice Quality Reporting Program (HQRP), established in 2010 with the passage of the Affordable Care Act, mandated quality reporting requirements for hospice programs. Since that time, to provide transparency to consumers and improve care to hospice patients, hospices have been required to both measure and report quality care measures. The Hospice Act differs from the HQRP, in that it provides more detail about surveyor training, the survey process, and intermediate sanctions for hospices.  Surveys will continue to be required every 36 months and if there is more than one surveyor (required to be a nurse), it can be conducted by other members of the interdisciplinary team. The interdisciplinary surveyor team is an important opportunity for hospice social workers, in that it includes for the first time, the potential for professional social work oversight to be included in a Center for Medicare & Medicaid Services (CMS) hospice survey. 

SWHPN is thrilled to announce that three social workers have been announced as part of the seventh cohort of the Cambia Health Foundation’s Sojourns® Scholar Leadership Program. 

Cara L. Wallace, PhD, LMSW, APHSW-C of Saint Louis University; Rachel Rusch, LCSW, MSW, MA of Children’s Hospital Los Angeles; and SWHPN Board Member Stephanie P. Wladkowski, PhD, LMSW, APHSW-C of Eastern Michigan University were each carefully chosen through a rigorous selection process from a highly competitive pool. SWHPN is proud of their commitment to improving the experience of people facing serious illness and their caregivers. 

“The world has been abnormal for so long that we've forgotten what it's like to live in a peaceful and reasonable climate. If there is to be any peace or reason, we have to create it in our own hearts and homes.” ― Madeleine L'Engle, A Swiftly Tilting Planet

As of this writing, there are less than thirty days until the 2020 Election. This has been a year of tremendous uncertainty on so many fronts, and unlike in past years, it seems the uncertainty will continue through Election Night and possibly beyond.

As a 501(c)3 nonprofit, SWHPN is not permitted to endorse a specific candidate, nor are we allowed to oppose any candidate.

Thanks to a generous grant from the American Nurses Foundation, SWHPN is able to offer a limited number of scholarships for our August, September, and October SWHPN Summits. These scholarships are for both members and non-members, and will cover the costs associated with one Summit.

We are hoping to help social workers that have been negatively impacted by COVID, so that you may continue to learn and get CE hours during this difficult time. In the event that demand exceeds the available supply of funds, we will use a random lottery to determine the scholarships. Applications will be accepted on a rolling basis until September 14, 2020.

APPLY HERE

Last month, more than 125 SWHPN members, social work professionals, and students joined together for our virtual June Summit, “Cultural Competency in Hospice and Palliative Care.” Held on Juneteenth and during Pride month, we wanted to use the day as an opportunity to go beyond didactic presentations to showcase meaningful, actionable steps social workers could take to address racism, explicit and implicit bias, intersectionality, and more. During the post-Summit “networking happy hour,” attendees stayed online for an extra hour and a half to continue the discussion. It’s clear there is a hunger for more information about how to dismantle inequitable systems that harm Black people, Indigenous people, and people of color (BIPOC), whether they are patients, families, or social workers.

Post-Summit, what is SWHPN doing to address the changes that are needed?

As social workers in this pivotal moment, there are key lessons from the field of social work, and particularly the field of palliative and hospice social work, that we at SWHPN can apply to help some of us become better both in our work and our day-to-day lives.

We know there is a lot going on. In just the past twelve weeks, we’ve seen the COVID-19 pandemic blaze through our communities, resulting in more than 100,000 deaths. We’re seeing the related economic downturn affect workers, businesses, housing, food security, and more interrelated systems. We’re sharing the righteous anger from thousands of people across the country as they protest the impunity with which racial, ethnic, and xenophobic hatred and violence has been allowed to flourish. We echo the statement cried out on the streets and emblazoned across social media that Black Lives Matter.

Through it all, hospice and palliative care social workers have faced changing norms and practices head-on. We’ve grappled with determining who is considered an “essential” worker eligible for PPE. We’ve learned how to conduct family meetings in our living rooms and parking garages via videoconferencing and new apps. We’ve figured out how to show a smile behind a mask, how to show concern without being able to hug, and how to record memories and share presence for loved ones who couldn’t be physically present. 

AND we’ve done all of that while also grappling with the social justice issues that, due to hundreds of years building up layers upon layers of structural racism and inequities, are suddenly split open for all to see. Of the COVID deaths, we see the disproportionate impact it has had on Black people, Native Americans, Latinos, LGBTQ+ people, incarcerated people, and other marginalized communities, due directly to historical factors including redlining, unequal access to  to jobs, healthcare, and insurance, and stigma from healthcare providers. In the economic downturn, we see the same factors at play again, affecting those already struggling; and again in the police and judicial systems that overwhelmingly harm communities of color. It has been a lot to take in and process, even more for our social workers who are living it as a reality.

• COVID-19 Health Literacy Project
• COVID-19 guidelines: CDC’s general recommendations for coronavirus prevention translated into the most common languages in the U.S.
• EMBARC COVID-19 resources in ethnic languages from Burma including Hakha Chin, Mizo Chin, Karenni, Karen and Burmese. Information will also be provided in Kirundi, Kunama, Lingala, French and Swahili.
• New Hampshire government has resources in eight languages (including a video in American Sign Language)
• Washington’s Department of Health offers information in 15 languages
• American Public Health Association's Get Ready Campaign for Coronavirus

The Social Work Hospice and Palliative Care Network (SWHPN) wholeheartedly rejects the killings of black and brown people by police. As social workers helping ease suffering at end-of-life, we cannot let racism and disparities in care go unchecked. We are here to support a more just, equitable system for all.

Our organization is comprised of nearly 1,000 hospice and palliative care social workers throughout the country. Our core work focuses on providing professional development, amplifying evidence-informed best practices, and advocating for improved policies and increased funding, so that all patients and families experiencing serious illness receive expert psychosocial care which alleviates their suffering, improves their quality of life, and facilitates their dying in accordance with their wishes.

A few months ago, a Child Life Specialist who I work closely with and I discussed talking about feelings. She assumed I'm good at this because I talk about feelings all day long—most days at work, and often with colleagues and friends who come to me to talk through difficult emotions. I laughed and said, "Yes, I spend all day talking to people about their emotions; that's easy. Talking about my emotions is something else altogether." If I were to gather a room full of social workers together, I'd be willing to bet the same would be true for many of us.

But now that a worldwide crisis has hit, we're forced to face at least some of our emotions on a daily basis in order to manage our own mental health and coping. For me, as someone with a mental illness (major depressive disorder), I have to be conscious not only of my treatment (medication and therapy adherence on a routine schedule) but also how I am tapping into my own coping mechanisms. As we ask in our field, how are they working for me? In addition to the struggles with depression I typically deal with, which can be amplified by isolation and hopelessness if I let them, I also struggle with a feeling that many people are confronting now, especially those with disorders: anxiety.

One tool we can use to help us manage anxiety is mindfulness, as it can help us to focus on the present moment and stop perseverating on the past and the future. There are a number of free tools out there right now that can be helpful with this: Mindful.org has a page of free resources, including articles and meditations. MindwellU has a 30-day mindfulness challenge that can encourage you to slow down a few times a day.

Another tool that can be helpful is to put the experience we are all having in a cognitive frame that makes sense for you. In the first episode of her podcast, Unlocking Us, Brene Brown speaks about something she labels "FFTs" for "_______ First Times", and she shares that the ability to normalize experiences that are foreign to us, like going through a pandemic, helps us realize that our responses, like anxiety and fear, are typical. This helps us put the experience into perspective and reality-check our expectations. In this way, Brown gives us a tool with which to respond to the FFTs we keep experiencing during this crisis, so that we can stop reacting to the experience and start living again.

Since we talk about going back to the social work basics in times of crisis, it doesn't hurt to mention the self-care basics when dealing with feelings of anxiety, stress, and worry:

As COVID-19 has changed visiting policies in hospitals and other facilities, it has also changed how people say goodbye to the ones they love, and how we as social workers support them in saying those goodbyes. Anticipatory grief is happening virtually and in isolation, and part of our work during this pandemic is connecting families with patients, supporting them as they say goodbye, and acknowledging the loss of saying that goodbye in person. As a palliative care social worker, I have encountered many instances in which family members could not be present to say goodbye to the patient. Some family members are COVID+ themselves, are immunocompromised, or live across the country or world. While one healthy visitor is allowed to visit a patient who is imminently dying, predicting someone’s final hours and minutes can be difficult to do, and sometimes family are concerned about coming to the hospital and putting themselves at risk.

Technology has allowed us to support families in their grief, and for those who do not have access to a video camera, telephone communication has proved vital. There are some roadblocks to connecting families with patients- clinicians working remotely, a limited number of staff who are allowed to enter a COVID+ patient’s room, a high number of palliative care consults, limited technology that staff and family members have access to, and ever present technological glitches. Despite these barriers, my palliative care colleagues have wielded creativity, compassion, and collaboration to facilitate goodbyes, and share messages of love in a time of overwhelming death and despair.

Over the past several weeks, my team has been able to coordinate Zoom video meetings so that families can see their COVID+ family members at the end of their lives. We have set up Zoom meetings, disseminated the login information, and our physicians and nurses have brought iPads to patients so families could see their hospitalized family members. In instances where the physician cannot enter a patient’s room (either to limit exposure or to conserve PPE), and the patient cannot hear their families on the iPad, we have invited those in attendance at these meetings to write messages in the chat box, or to say messages out loud with the promise that we would deliver these messages to the patient. Over Zoom, families have joined together in grieving the loss of their family members who have meant so much to them, sharing memories and gratitude, and saying their goodbyes.

After these meetings, I have transcribed their written and spoken messages so they could be placed by the patient’s bedside. The physician on my team suggested I compile them into transitional documents for families, which they could continue to reflect on as the patient transitioned. I have emailed the documents to families with space for additional messages for those who had been unable (either logistically or emotionally) to join the call, and placed one-page abbreviated versions by patients’ bedsides so physicians and nurses entering the rooms could read brief messages to patient from their families. This interdisciplinary intervention aimed to facilitate connections between patients and families, and we hoped it would provide opportunities for care providers to connect with their patients as well. Working within the boundaries we had, we hoped to provide support, and were grateful that families could connect with patients and with one another through video and written text.

Another intervention we have used with caregivers for patients who did not have access to a video camera or smart device, and were unable to visit at the end of life due to visitation restrictions, was to pass on messages verbally. In circumstances where bringing a phone to the patient is not possible, I have asked friends and family members what they wanted to say to patients. They have shared messages such as “You are not alone” and “I love you.” These messages are then imparted to the patients by physicians, nurses, and social workers. It is so important for friends and families to know that, though they are not with them physically, their messages will be delivered.

Collaboration has always been inherent in palliative care, though I have never been as grateful for it as I am now. As families and patients remain in quarantine, healthcare workers are bringing people together virtually in a number of creative ways, and palliative care social workers are uniquely positioned to provide anticipatory grief support to the families and friends of patients with COVID-19. As we navigate the psychosocial impact of COVID-19 on grieving families, we can continue to explore new ways of facilitating communication and share our newfound interventions with each other.

Kasey Sinha, Palliative Care Social Work Fellow at Mount Sinai Beth Israel in New York, NY. SWHPN is accepting guest submissions on COVID-19 practice and interventions at [email protected].

Over the past month, our weeknight Social Work Open Discussions have been attended by social workers and psychosocial professionals from over thirty states and four countries! Thanks to all who participate and make these meetings the dynamic discussions they are during this critical time.

We are updating our schedule over the coming weeks to consolidate these meetings, as well as provide some discussion around specific topics. As always, these remain informal gatherings and safe places for clinicians and colleagues to share feelings and fears in an effort to find renewal, support, and social connection.

Beginning Tuesday, May 5th, please join us on Tuesdays and Thursdays at 7:00 pm EST. You can register to participate here. Come as little or as often you need.

See the updated schedule:

• Thursday, April 30th: Topic: Grief and Trauma with special guest April Naturale. Looking to the future, there will likely be some level of grief and trauma for our colleagues and a large portion of the world that exists for a long time. What are we going to do about that as a field and as individuals?

• Tuesday, May 5th: Open Discussion
• Thursday, May 7th: Topic: New Normal. What does the "new normal" for hospice and palliative social work look like, and what can we do to ensure that our field is equipped to support patients, families, and colleagues? What are you hoping for, what are you worried about?

• Tuesday, May 12th: Open Discussion
• Thursday, May 14th: Topic: Transitions. How has your role changed since COVID-19? If you're working from home or have changed locations, what support do you need? How are you adapting? What things will remain post-COVID? 

You can find our most updated list of events and Social Work Open Discussion topics on the SWHPN Events Calendar.

Deadline: December 31, 2020

The coronavirus pandemic has created changes and challenges in how social work practice is being conducted in all areas of the health care system due to guidelines and restrictions put in place in response to the pandemic. Thus, hospice, palliative and other social workers are being tasked with supporting individuals, families, and co-workers in new, unforeseen, and creative ways. In this special issue, social workers are encouraged to share reflections about the situations, challenges and changes they are experiencing as well as the processes of new ways to connect with those in most in need of intervention. In addition, it is important that social workers’ practice self-care and so papers on approaches to doing so during this stressful time are welcome.

As SWHPN gathers resources for its social workers who are facing an unprecedented time in their practice, we've issued our first tip sheet: Working with Families Facing Undesired Outcomes During the COVID-19 Crisis.

You can find tip sheets and additional tools, resources, and information on the COVID-19 Resources Page. Please share widely.