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REFLECTION ON PRACTICE
Self-care is a MUST for health care providers caring for the dying
by Kalliopi (Kalli) Stilos and Lesia Wynnychuk
D
eath is a daily experience for us, as palliative care providers. Roughly, half of the patients we care for die of complications from their cancer and the remainder die from non-malignant events such as strokes or progressive disease such as dementia. There is no escaping death. Some of our encoun- ters with these patients are brief (Stilos, Lilien et al., 2016), as they die within 72 hours of admission. Often we develop therapeutic relationships with patients and we learn about their relationships, their family and loved ones, their jobs- and many times their dream jobs-their hobbies, plans, hopes and dreams for their future. As they approach the end of their lives, they experience loss, and their loved ones begin to grieve. Their losses during our time together become our losses. And when we witness their death, we too experience grief. The recurring loss of life is something we sit with day after day.Patients touch our lives, and we hope we touch theirs. We know we can help from a pain and symptom perspective.
Other times, the therapeutic connec- tion is deep, and they share intricate details and private moments, which
may not have been shared with anyone in their circle. Being privy to these is a gift, an honour, and a burden. Every loss is cumulative and, eventually, can be overwhelming. In these times with the pandemic upon us, the burden of wit- nessing an increased number of dying patients, along with the challenges of caring for these patients without their loved ones present at their besides, often feels overwhelming for us, as healthcare providers.
But positive experiences can occur in chaos, good can happen under adver- sity, and joy can be found amid sadness.
For us, as palliative care providers wit- nessing recurrent loss of life on a daily basis, we need to remind ourselves that we are still living and, “[n]o matter how many scars we carry from what we have gone through and suffered in the past, our intrinsic wholeness is still here:
what else contains the scars? None of us has to be a helpless victim of what was done to us or what was not done for us in the past, nor do we have to be helpless in the face of what we may be suffering now. We are still what was present before the scarring—our orig- inal wholeness, what was born whole.
And we can reconnect with that intrin- sic wholeness at any time because its very nature is that which is always pres- ent. It is who we truly are” (Kabat-Zinn, 2013, p. 185).
Jon Kabat-Zinn first introduced Mindfulness-Based Stress Reduction (MBSR) therapy for patients in American hospitals in the 1980s. Since then, MBSR has been found beneficial to heathcare providers facing stress, anxiety, burnout, and compassion fatigue. Mindfulness offers clinicians a practice “to deal with distress in that it directly addresses meaning in life and work [and]… is entirely secular and firmly founded in empiricism” (Raski, 2015, p. 57).
Our organization developed The Quality Living and Dying Initiative (QLDI), a corporate institution-wide commitment to ensure dying patients and their families receive the high- est quality of care (Stilos et al., 2016).
Freeman’s 2013 ‘CARES’ (comfort, air- way management, restlessness and delirium, emotional and spiritual sup- port, and self-care) acronym was used as the guide to develop our organization’s comfort measures order set, which out- lines the assessment and management of common symptoms and issues at end of life (Stilos et al., 2016).
However, this acronym goes beyond just focusing on the patient and the fam- ily experience. It also acknowledges that healthcare providers working with the dying must also “evaluate [their] emo- tional status and how it is impacted by providing care to the dying” (Freeman, 2013, p. 151). It is widely reported that healthcare providers “who care for seri- ously ill patients face a high risk for diminished person well-being, includ- ing burnout, moral distress, and com- passion fatigue” (Sanchez-Reilly et al., 2013, p. 75).
The focus of this commentary is on the last letter in the acronym, ‘S’, which stands for self-care. “Self-care is a spec- trum of knowledge, skills, and attitudes including self-reflection and self-aware- ness, identification and prevention of burnout, appropriate boundaries, and grief and bereavement” (Sanchez- Reilly et al., 2013). Self-care “encourages debriefing, communication and seeking methods to promote emotional health”
(Freeman, 2013, p. 151). Integral to cop- ing with the amplified sadness from witnessing recurring deaths is finding ways to build resilience.
Our organization acknowledges that staff may experience elevated lev- els of distress in their workplace, even more so now during the current global
AUTHOR NOTES
Kalliopi (Kalli) Stilos, RN, MScN, CHPCA(C), Advance Practice Nurse for the In-Patient Palliative Care Consult Team, Adjunct Clinical Faculty, University of Toronto’s Lawrence Bloomberg Faculty of Nursing, Sunnybrook Health Science Centre, 2075 Bayview Avenue, Toronto, ON M4N 3M5 H337 kalli.stilos@sunnybrook.ca Lesia Wynnychuk, M.B.A. Assistant Professor, Department of Family and Community Medicine, Division of Palliative Medicine, Faculty of Medicine, University of Toronto, Sunnybrook Health Science Centre, 2075 Bayview Avenue, Toronto, ON M4N 3M5 H337
Lesia.Wynnychuk@sunnybrook.ca
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pandemic climate. Our organization circulates resources and practical tools on a routine basis, including informa- tion on peer support groups, mindful- ness groups, one-on-one peer support sessions, and resources tailored to the individual’s needs. Providing staff with various options may benefit and empower those who do not know where to turn during these unprecedented circumstances.
In situations where institutional support or resources are unavailable to healthcare providers working with patients at the end of life, it has been noted that providers should prioritize self-care (Shanafelt et al., 2005). We must think about how we, as individ- uals, support ourselves outside of our organizations and find ways to grieve and process the losses and suffering we encounter. We need to find the support we require to continue to enter the hos- pital doors each day. We cannot solely rely on our organization to ensure we sustain our own well-being.
Improving one’s wellness involves implementation of self-care strategies, including attention to both personal and professional self-care (Chittenden, 2011). Personal self-care includes our families and loved ones, our commu- nity, and our spirituality, as we define it. The performance of personal self- care includes prioritizing relationships with our families, our loved ones, and our community. It may include main- taining a healthy lifestyle, regular exer- cise, vacations, hobbies, and work-life balance (Dyrbey et al., 2011; Bowman, 2007; Shanafelt et al., 2005), and it may include strategies such as practicing mindfulness and meditation, reflec- tive writing, reciting a saying, and pursuing spiritual development (Cohen- Katz et al., 2004; Puchalski, 2012).
Incorporating these self-care strate- gies has many positive outcomes such as “minimizing burnout, compassion fatigue, moral distress” (Sanchez-Reily et al., 2013). When a healthcare provider tends to their personal well-being there is positive potential for job engagement, compassion satisfaction and resilience (Sanchez-Reily et al., 2013).
As outlined above, enhancing one’s spiritual development to find greater meaning in personal and professional relationships is a personal type of self- care. As a practisng Greek Orthodox parishioner, part of my weekly routine entails attending church on Sunday’s.
COVID altered that practice whereby I now listen to services from the privacy of my home. Partaking in the church service brings me great peace and solace. It brings me strength to vener- ate for the daily gifts that are bestowed upon me and remember the patients I cared for and who have passed.
Embedded in the weekly Sunday service is the chanting of “Memory Eternal’- Tone Eight with the Saints, “Give rest, O Christ, to the soul(s) of Your servant(s) where there is no pain, no sorrow, no sighing, but life everlasting” (Greek Orthodox Archdiocese of America, 2017). This is recited by the priest towards the end of the service and is for those who have passed on. It is during this hymn that I take time to reflect on my patient encounters, my feelings, and my role in their care.
As the other co-author, practise daily meditation. For me, meditation does not diminish pain in all circumstances, but it does provide a space for holding and feeling suffering, rather than ignor- ing, dismissing, or trying to change or control it. Meditation allows me the chance to fully feel my emotions and move through my own thoughts and
feelings with empathy and compassion and without judgment or attachment.
My daily meditation practice—at the same time of day, on the same cush- ion—has become a habit, strengthening over time, and compelling me to return again and again. Meditation restores my authentic life and anchors me from becoming lost and depleted. “[J]ust as the sun is not affected by the weather on Earth, so our innate happiness may remain unaffected by causes and con- ditions swirling around us in our lives, even if we do not always remember that this is so” (Kabat-Zinn, 2006).
Self-awareness leads to greater job efficiency, satisfaction, enhanced self-care, and improved patient care and satisfaction (Novack et al., 1999).
Healthcare providers who have “greater self-awareness may experience greater job engagement with less stress during interactions within their work envi- ronment, experience empathy as a mutual healing connection with their patient, and derive compassion, sat- isfaction and vicarious posttraumatic growth” (Kearney, 2009, p. 1160). “Self- awareness may both enhance self-care and improve patient care and satisfac- tion” (Kearney, 2009, p. 1160).
The dismal recognition of the impor- tance of self-care in the practise of palli- ative care is one that cannot be ignored.
We encourage those who are in prac- tice to develop a self-care plan to miti- gate the effects of burnout, compassion fatigue, and moral distress. We owe it to ourselves, to our loved ones, and to the patients and their families for whom we care, to find ways to nurture and restore ourselves. Even in the midst of a global pandemic, there is no time like the present.
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