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Coping with Serious Illness: Embracing Mortality and Navigating End-of-Life Decisions

Facing a serious illness challenges our understanding of life and mortality. This guide encourages individuals to prepare for the possibility of limited time while fostering authentic living and reducing regrets. It offers crucial communication strategies for end-of-life discussions, clarifying values and priorities, and emphasizes the importance of support networks. The document also addresses common fears and provides recommendations for meaningful engagement during difficult times, ensuring a compassionate and dignified approach to serious illness and dying.

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Coping with Serious Illness: Embracing Mortality and Navigating End-of-Life Decisions

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  1. Coping with a Serious Illness Shirley Otis-Green, LCSW Senior Research Specialist City of Hope National Medical Center Duarte California Sotis-green@coh.org

  2. Unfortunately, There are No Guarantees... • Life is a dangerous enterprise: • War, disease, injury, earthquakes, floods, landslides, car-wrecks… • How do we cope with the risks that surround us and our loved ones daily? • Perhaps we all would do well to increase our tolerance of life’s ambiguities and prepare for the possibility of our own mortality…

  3. Imagine for a moment... • What would you do if you or a loved one might have only a limited time to live…? • Considering our mortality challenges us to: Live authentically, live well, live now…so as to minimize future regrets.

  4. Serious Illness Changes Things... • A diagnosis of a serious illness is an invitation to consider the possibility of our own mortality. • This is often experienced as a “personal earthquake,” reminding us that we are not in control, and the world isn’t as predictable as we had once believed.

  5. But This Takes Courage... • We are invited to face our fears… …of distance, disability, disfigurement, dependence and ultimately of death.

  6. Common End-of-Life Issues • Impact of treatment options on quality of life • Pain and symptom management • Spiritual concerns regarding meaning of life • Completing “Advance Directives” • Deciding about “Do Not Resuscitate” orders • Impact of illness upon family (Burden - Protection Continuum) • Completing “unfinished business” • Knowing when to discontinue “life support” • Managing changes in treatment or prognosis

  7. Important Communication Goals for those facing End-of-Life: • Clarify your values and goals of care so that time remaining can be of highest benefit. • So that decisions can be made that are most reflective of your preferences. • Identify a surrogate/agent/advocate for later decision-making purposes.

  8. When Facing End of Life… • Encourage the development of “back-up plans.” • Increase tolerance for ambiguity. • Mobilize network for support. • Utilize innovative strategies to address unresolved suffering (the arts, music, journaling, poetry, etc.). • Provide “anticipatory guidance.”

  9. When Facing End of Life… • Assist in re-prioritization. • Reframe experiences in meaningful way. • Encourage life review. • Address “unfinished business” issues. • Manage logistics (“What do others need to know/do when you’re not here for them?”). • Resolve responsibilities (for dependents, pets, distribution of assets).

  10. But, Talking about Dying... • Makes us uncomfortable. • Makes others uncomfortable. • Even under the “best of situations” it seems fraught with peril...

  11. So We Delay... • Hard to get the timing “right”… • There seems to be only two choices and they both seem “wrong”! • Too Early (We fear that others will “give up hope” and die more quickly than they otherwise would have). • Too Late (One is actively dying and unable to act upon the information), and we are filled with regrets...

  12. Recommendations: • Share your hopes, dreams, fears with loved ones and your healthcare team (Don’t just assume that they know what matters most to you!). • Surround yourself with family, friends, pets. • Enjoy the music and magic of each day. • Expand your support network. • Reconnect with traditions that are most meaningful to you.

  13. Request a Family Conference to Determine Patient’s Values and Assist with Prioritization of Concerns... : • Arrange to have significant others present. • Request privacy. • Request sufficient time for meeting. • Request services of an interdisciplinary team whenever possible.

  14. Be Prepared for these “Dreaded Questions” • “Why me?” • “Why now?” • “Why to my family?” • “Am I going to die?” • “Isn’t there anything else you can do?” • “What will happen next?” • “How long do I have?”

  15. But, as we know…“Prediction is hard, especially of the future.”-Yogi Berra

  16. When Discussing Prognosis • Unfortunately, complete accuracy isn’t an option: Rough approximations are the best that healthcare can offer (“hours to days”/ “days to weeks” / “weeks to months”). • But remember, “something” can happen suddenly that completely changes the situation...so there is wisdom in “hoping for the best while preparing for the worst…”

  17. When Faced with Difficult Decision-Making: • Request realistic information regarding risks associated with each proposed intervention. • Identify a reasonable trial period and understand what are indicators of progress. • Plan to periodically meet to review the changing situation.

  18. During the Dying Process... There’s always something that can be done! • Be an on-going advocate for symptom relief. • Offer empathy and reassurance. • Advocate for culturally relevant rituals. • Address the needs of loved ones. • Expect “anticipatory grief.” • Be an advocate for your or your loved one’s wishes regarding end-of-life care. • Offer your companioning presence. • Bear witness...

  19. Dying well is really about living well… “Perhaps, true wisdom is knowing what animates one’s existence, and living accordingly.”

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