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Coping with a Serious Illness

Coping with a Serious Illness. Shirley Otis-Green, LCSW Senior Research Specialist City of Hope National Medical Center Duarte California Sotis-green@coh.org. Unfortunately, There are No Guarantees. Life is a dangerous enterprise:

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Coping with a Serious Illness

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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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