The Impact of Death Anxiety on Communication and Care Delivery for Patients with Advanced Illness Liz Elmquist, LMSW, New York Presbyterian/Weill Cornell Medical Center Carolyn Fulton, LCSW-R, Memorial Sloan Kettering Cancer Center 1 2.20.17
Objectives To define death anxiety o Citing the literature Why are we talking about this? o Relevance to health care provider communication The role of social work o Building on self-awareness Case example o Understanding death anxiety in action what we ve noticed Tools for clinicians o Ideas for improving communication and care delivery in your setting Moving forward 2
Setting the tone 3
What is death anxiety? 4
Defining death anxiety Ø A nega've reac'on to the awareness of the inevitability of death Ø Unwanted or unpleasant emo'ons that surface when thinking about ceasing to exist Ø O=en accompanied by feelings of dread or other unwanted emo'onal responses (e.g. fear, anger) Sharif Nia H, et al. IJCBNM. 2016;4(1):2-10; Peters L, et al. Open Nurs Jour. 2013;7:14-21 5
Why acknowledge death anxiety? 6
Why Ø Advanced illness poses a unique opportunity to address the nearness of death/dying in an open manner Ø Daily active witnessing of death, dying, grief, and bereavement for health care providers How do our personal views influence our ability to engage openly around death/dying with authenticity and empathy? Do our personal views and experiences allow us to go deeper or do they result in avoidance? Kissane D. ARCH Intern Med 2012; 172(19):1501-1505; Chan W, et al. Health & SW 2016; 41(1):33-41 7
A closer look AWtudes/beliefs; ceasing to exist; past regrets; personal losses; future losses Death anxiety Level of comfort Level of competence 8 Chow A. Bri=sh Jour of SW. 2013;43:373-393
Impact on communication For patients & families Pa'ent EOL discussions may improve a patient s consent to certain treatment measures, EOL planning, or establishment of advanced directives. Provider Family May reduce psychological distress; patients and families experience death anxiety too! For providers May result in discussions re: EOL planning/advanced directives or referrals to hospice sooner Brown A, et al. Intl Jour of Gyn Can. 2014;24(8):1521-1526; Wright A, et al. JAMA. 2008; 300(14): 1665-1673. 9
The role of social work Clinical support and assessment Understanding of patient/family values re: end-of-life issues o Identify and mediate team o Identify and mediate impact on family o Facilitate patient/family/team discussions o Provide education and information to the medical team 10
Building on self-awareness Development of self-awareness for clinician is unique to SW profession SWs taught to uncover transferential reactions situated in the patient/clinician dynamic Differentiating one s own needs from a patient s needs Protective factors use of supervision, exploring effective communication, continuing education Chan W, et al. Health & SW. 2016; 41(1):33-41; Chow A. Bri=sh Jour of SW. 2013; 43:373-393 11
Case example: Neil Male in late 30s with gastric cancer Married with 2 young children (ages 7 & 9) High social support Uncontrolled pain and symptoms Spiritual distress: role as a father, role as a spouse, why should my children be left without a father? Hopeful attitude and resilient Infectious personality 12
Common triggers of provider death anxiety Pa,ent s young age defies expecta=ons of when death should occur Young children what would I say to my own children? Uncontrolled symptoms is this what my death will look and feel like? Pa,ent s hopefulness I can t talk about advanced direc=ves because I may cause harm Quinn- Lee L. Jour of SW in EOL & Pal Care. 2014; 10:219-239 13
Clinical themes Ø Ability to discuss advanced directives Ø Offering treatment when approaching EOL Ø Comfort level with hope vs. denial Ø Looking through the lens of the patient and how illness is understood 14
Tools for clinicians Reflection rounds/ processing group: Provide a format for providers to reflect on their practice Ritual to improve selfawareness Social work case presentation: Formal case presentation from SW point of view Discussion of areas of countertransference and where SW struggled with own communication efforts Social workers as mentors: SWs as debriefing buddies Provide education around emotional impact of work & implications for care 15
Moving forward 1. Need for experiential training modules u Most training programs/workshops for communication focus on knowledge and competency, not emotions! 2. Evidenced-based programs u Model in Hong-Kong for developing emotional competency for SWs working with EOL/bereavement 3. Need for training for all professional care providers working in PELC u Room for improvement across disciplines; there are many providers caring for patients/ families! Chow A. Bri=sh Jour of SW. 2013;43:373-393; Black K. Death Studies. 2007;31:563-572 16
Thank you! With special thanks to the following: Liz Blackler, LCSW-R, MBE Dory Hottenson, LCSW Annamma Abraham Kaba, LCSW-R Penny Damaskos, PhD, LCSW-R, OSW-C Judy Nelson, MD, JD Amy Chow, PhD, RSW And Nola, the greyhound 17
Thoughts, questions, feedback 18
References Black, K. (2007). Health care professionals death attitudes, experiences, and advance directive communication behavior. Death Studies, 31, 563-572. Brown, A., et al. (2014). Does death anxiety affect end-of-life care discussions? International Journal of Gynecological Cancer, 24(8), 1521-1526. Chan, W., et al. (2016). Impact of death work on self: Existential and emotional challenges and coping of palliative care professionals. Health & Social Work, 41(1), 33-41. Chow, A. (2013). Developing emotional competence of social workers of end-of-life and bereavement care. British Journal of Social Work, 43, 373-393. Kissane, D. (2012). The relief of existential suffering. Arch Intern Med, 172(19), 1501-1505. Peters, L., et al. (2013). How death anxiety impacts nurses caring for patients at the end of life: A review of literature. The Open Nursing Journal, 7, 14-21. Quinn-Lee, L., Oson-McBride, L., Unterberger, A. (2014). Burnout and death anxiety in hospice social workers. Journal of Social Work in End-of-Life & Palliative Care, 10, 219-239. Sarif Nia, H., et al. (2016). Death anxiety among nurses and health care professionals: A review article. IJCBNM, 4(1), 2-10. Wright, A., et al. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 300(14), 1665-1673. 19
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