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Social Workers are on the Frontlines of Palliative Care

By Shirley Otis-Green, MSW, MA, ACSW, LCSW, OSW-C

How are you spending your days? Wisely and well? Working in palliative and oncology care, I am acutely conscious of how quickly time passes and how uncertain is our future. My wish for you is that your days are filled with passion. Passion for your family and friends and personal interests, but passion for your work as well.

Passion is our strongest motivator and most reliable indicator that our actions are authentically our own. Passion fuels our efforts to be a force for change. And a transformation in how care is currently delivered is desperately needed. Our fragmented health “system” is poorly designed for the care that our patients and their care partners so urgently need.

Dealing with a serious illness exacts a tremendous toll on patients, families and care providers – we need not add additional burdens to their efforts. Our patients deserve encounters with competent and caring health professionals who are passionately committed to their well-being.

Why Palliative Care?

The field of palliative care provides a good home for such a professional. Palliative care is still an emerging practice. Its development and expansion sprang from the passions of visionary leaders who cared so deeply about the challenges facing seriously ill patients that they dared to create change in how the very delivery of care was provided.

These leaders challenged the status quo and created new systems of care that sought to flatten the medical hierarchy. They recognized that the multidimensional aspects of suffering associated with a serious illness required an interprofessional team approach with a myriad of skilled experts who are each passionately committed to addressing the physical, psychological, social and spiritual domains that make up a patient’s quality of life.

Palliative care understands that people are more than their disease and that interventions must be contextualized to meaningfully address the values, concerns and priorities of each individual served. And the field of palliative care matures, we’re expanding from the hospital into patient’s homes and communities.

Hands

Social Work in Palliative Care

Fortunately for us, passionate palliative care professionals (I’ve always liked alliteration) have evidence-informed guidelines that can assist us as we seek to provide truly person-centered, family-focused and culturally-congruent care.

The 2018 edition of the National Consensus Project Guidelines for Quality Palliative Care document the importance of the skills palliative social workers bring to patient care. The social work voice is needed in each of the eight domains listed below (Altilio, Otis-Green & Dahlin, 2008).

  1. Structure and Process of Care: Embedded in this domain is support for social workers to be recognized as core members of the interprofessional palliative care team. We bring collaborative communication skills that are vital for effective team cohesion and the provision of coordinated care. We also have a role in supporting the team in building resilience and offering reminders of the importance of self-care.
  2. Physical Aspects of Care: Social workers can assist the team in screening for symptom burden and provide a plethora of interventions to assist in the management of physical distress and functional impairment, as well as provide education related to concerns about the myths and misperceptions associated with many pain management strategies.
  3. Psychological and Psychiatric Aspects of Care: Social workers are the largest providers of mental health services in the US and have a responsibility to take a leadership role in creating screening and support services for patients and their loved ones. Social workers can normalize the common concerns associated with a serious illness and assist in addressing the distress that may result. Social workers are often called to support their colleagues as they cope with the psychological impact of this emotionally charged work.
  4. Social Aspects of Care: Social workers have a critical role in reminding the healthcare team that the diagnosis and treatment of a serious illness impacts more than just the patient. Social workers bring a systems perspective to their work and an ability to contextualize the concerns of patients and their care partners. We can assist the team in better understanding complex family dynamics and ensure that the needs of family caregivers are not overlooked.
  5. Spiritual, Religious and Existential Aspects of Care: In concert with our chaplain colleagues, social workers are well positioned to support patients and families in exploring concerns about meaning and purpose and can be mindful of the spiritual and existential impact that this work may have on our colleagues and team members.
  6. Cultural Aspects of Care: Social workers often find themselves in the role of “culture brokers” who assist the team in better understanding the cultural nuances of the diverse patient populations that we serve. We may find ourselves reminding others that “culture” is more than race and ethnicity, and that a comprehensive assessment conducted with cultural humility is needed to better understand a patient’s specific needs and concerns, paying special attention to health literacy, language sensitivity, disenfranchisement and resource limitations. Social workers are acutely aware of how the unintended impact of unconscious biases can permeate the delivery of healthcare.
  7. Care of the Patient Nearing the End of Life: Social workers play an important role when a patient is facing end of life. We can assist in legacy building and provide additional support and education to the patients and families by offering anticipatory guidance and exploring an individual’s values and preferences to aid in advance care planning and bereavement.
  8. Ethical and Legal Aspects of Care: Social workers are guided by principles of social justice and recognize that too often diversity is associated with disparities in care and limited access to quality care. We can act as the conscience of our institutions to address gaps in service. We are positioned to see areas of unmet need and ethically called to address the impact of the wide range of social determinants influencing our patient’s health and wellbeing.

How Education Empowers Us

But to most effectively engage in these roles, we need social workers who are passionate life-long learners. We need to skillfully assist patients as they navigate the disjointed medical environment. We need to identify a range of community referrals and resources to meet our diverse patient needs. And we need to be reflective practitioners who regularly identify gaps in our clinical repertoire and continually seek to expand our expertise.

If we are to provide excellence in care delivery, education, research, and program and policy development, we need to identify mentors who can guide our skill-acquisition and seek sources of additional learning. Social workers are called to live their professional values and become leaders and advocates for the vulnerable populations that we serve (Otis-Green, 2019).

There are textbooks (Altilio & Otis-Green, 2011; Sumser, Leimena & Altilio, 2019) and articles (Sumser, et.al, 2015; Glajchen, et.al, 2018) that can help further our expertise, and I’ve found that professional memberships in groups like SWHPN, AOSW, NHPCO, and others allow me to meet and learn from others who share my passion for the field and who support and inspire my growth.

Programs like the CSU Shiley Institute for Palliative Care’s Post-MSW Palliative Care Social Work Certificate program offer a deeper dive into the wonders of palliative social work. Our field is rapidly expanding and we now have the opportunity for specialty certification (for example: Advanced Palliative Hospice Social Worker Certification) that recognizes our expertise.

How Passion Nurtures Us

Having a career that we are passionate about sustains and nurtures us. Passion is needed for us to partner with our patients in the co-creation of the kind of system that we’d want for ourselves, our loved ones and those we serve. The inevitable tribulations and frustrations associated with working with seriously ill people in and around our dysfunctional healthcare system place us at increased risk for moral distress.

Passion builds resilience and gives us the courage to create meaningful change. A passion for excellence compels us to take the extra steps required to invest in our professional growth. Witnessing the passion of others inspires us to strive to improve care within our own areas of influence. And passion minimizes regret when we are facing our own end of days. To live passionately is to live authentically. My wish is that we are each living our lives richly filled with passion and purpose.

About the author:

Shirley Otis-Green, MSW, MA, ACSW, LCSW, OSW-C, is the founder of Collaborative Caring, an education, research and consulting firm. She is an internationally recognized speaker on quality-of-life, palliative care, leadership development, and more. She is a California Healthcare Foundation Leadership Fellow, serves on several editorial and professional boards, and is a Distinguished Social Work Practitioner in the National Academies of Practice. 

References:

Altilio, T., Otis-Green, S., (Eds.), (2011). Oxford Textbook of Palliative Social Work. New York, NY: Oxford University Press. https://global.oup.com/academic/product/oxford-textbook-of-palliative-social-work-9780199739110?q=altilio%20terry&lang=en&cc=us

Altilio, T., Otis-Green, S., Dahlin, C. (2008). Applying the National Quality Forum Preferred Practices for Palliative and Hospice Care: A Social Work Perspective. Journal of Social Work in End-of-Life and Palliative Care, 4(1): 3-16. PMID: 19042887, DOI: 10.1080/1552425082071999.

Glajchen, M., Berkman, C., Otis-Green, S., Stein, G.L., Sedgwick, T., Bern-Klug, M., Christ, G., Csikai, E., Downes, D., Gerbino, S., Head, B., Parker-Oliver, D., Waldrop, D., Portenoy, R. (2018). Defining Core Competencies for Generalist-Level Palliative Social Work. Journal of Pain and Symptom Management. https://www.jpsmjournal.com/article/S0885-3924(18)30452-4/fulltext

Otis-Green, S. (2019). Reflections on End-of-Life Care of the Urban Poor: Cowboy’s Legacy. In D. Moller, (Ed.), Dying at the Margins: Reflections on Justice and Healing for Inner-City Poor. New York, NY: Oxford University Press: 203-209.

Sumser, B., Remke, S., Leimena, M., Altilio, T., Otis-Green, S. (2015). The Serendipitous Survey: A Look at Primary and Specialist Palliative Social Work Practice, Preparation and Competence. Journal of Palliative Medicine. http://online.liebertpub.com/doi/pdf/10.1089/jpm.2015.0022

Sumser, B., Leimena, M.L., Altilio, T. (2019). Palliative Care: A Guide for Health Social Workers. New York, NY: Oxford University Press. https://global.oup.com/academic/product/palliative-care-9780190669607?cc=us&lang=en&