Spiritual Care in Hospice February 12, 2014

1. Spiritual Care in HospiceFebruary 12, 2014 Catholic Health East Spiritual Care Champions Series Kevin Clark, M.Div., Chaplain, Legacy Hospice, Castle Rock, Colorado

2. What is Hospice? • Hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments. • The goal of hospice care is to prevent and relieve suffering and to support the best quality of life for patients and their families. • Hospice care seeks neither to hasten death nor prolong life.

3. History of the modern Hospice movement • Dr. Cicely Saunders, British physician, established St. Christopher’s Hospice near London in 1967. • Team approach • Modern pain management techniques • Goal of compassionate care for the dying • The first hospice in the United States was established in New Haven, Connecticut in 1974.

4. History of the modern hospice movement • Congress established the Medicare Hospice Benefit in 1983. • Criteria for admission to hospice under the Medicare Hospice Benefit: • Patient must be diagnosed with a terminal illness and have a prognosis of six months or less to live. • Patient may stay on hospice service longer than six months as long as they are recertified at 90 days, 180 days, and every 60 days following.

5. Hospice Philosophy Dame Cicely Saunders, founder of the modern hospice movement, believed that all people deserve care, respect, and dignity at the end of life: “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”

6. Hospice Philosophy Live in the light of dying: “Somebody should tell us, right at the start of our lives, that we are dying. Then we might live life to the limit, every minute of every day. ‘Do it!’, I say. Whatever you want to do, do it now! There are only so many tomorrows.” - Pope Paul VI

7. Hospice Philosophy A somewhat different perspective on death: “I am not afraid of death. I just don’t want to be there when it happens.” - Woody Allen, American comedian

8. Unique features of hospice • Interdisciplinary team approach • Physician • Nurse • Certified Nurse’s Aide • Social Worker • Chaplain • Volunteer

9. Unique features of hospice • Holistic approach • Designed to care for needs of patient and family: • Physical • Emotional and psychological • Social • Spiritual • Patient and family centered care • Care is provided wherever the patient calls home

10. Unique features of hospice • Goal is quality of life • Hospice physicians and nurses are specialists in the treatment and management of pain and other symptoms • Care is generally low tech/high touch • Metaphor: hospice workers are midwives to the soul • Bereavement support is provided to families before and after a patient’s death

11. Hospice Facts and Figures • In 2012, 1.5 million patients received hospice services in the U.S. • In 2011, 45% of all deaths in the U.S. were patients under the care of hospice. • Hospice patients by age in 2012: • 65 years old and over 83% • 85 years old and over 40% • 35-64 years old 16% • Less than 34 years old less than 1% • Note: all facts are from the National Hospice and Palliative Care Organization (NHPCO).

12. Hospice Facts and Figures • Top five hospice diagnoses in 2012: • Cancer 37% • Debility 14% • Dementia 13% • Heart disease 11% • Lung disease 8% • Hospice payment sources in 2012: • Medicare 84% • Medicaid 6%

13. Hospice Facts and Figures • Hospice saves Medicare and Medicaid money: • A Duke University study in 2007 showed that hospice care reduces Medicare expenses during the last year of life by an average of $2309 per hospice patient. • This resulted in a savings to Medicare of $2.4 billion in 2011. • Hospice patients also had fewer 30 day hospital readmissions, fewer in-hospital deaths, and significantly fewer hospital and ICU days than other patients with similar diagnoses.

14. Hospice Facts and Figures • Hospice provides the care that Americans have said that they want: • A Gallup poll found that close to nine in ten adults (88%) would prefer to die in their homes, free of pain, surrounded by family and loved ones. Hospice works to make this happen. • NHPCO research shows that 94% of families who had a loved one cared for by hospice rated the care as very good to excellent.

15. Spiritual Needs and Spiritual Care Interventions • Patients need help dealing with facing their own mortality and death. • “Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.” - Isaac Asimov • “Death helps us to see what is worth trusting and loving and what is a waste of time.” – J. Neville Ward, Methodist minister • Families need help dealing with the impending loss of their loved one (anticipatory grief).

16. Spiritual Needs and Spiritual Care Interventions • Life review: • Anything I need forgiveness for? • Any relationships I want healing for? • Anything to celebrate? • “Forgive yourself before you die. Then forgive others.” – Morrie Schwartz, American educator

17. Spiritual Needs and Spiritual Care Interventions • Relationship completion (from Ira Byock’s book Dying Well) • Five things to say before you die: • I love you. • I forgive you. • Please forgive me. • Thank you. • Good bye.

18. Spiritual Needs and Spiritual Care Interventions • Exploring spirituality • What is your vision of God or the divine? • What is your vision of the afterlife? • Finding peace with God • Processing emotions: fear, anger, sadness • Companionship: someone to walk the journey with them through “the valley of the shadow of death” • Leaving a legacy/blessing for the family • Parents who write letters to their children

19. Spiritual Needs and Spiritual Care Interventions • Final arrangements • Estate planning • Completing a will • Selecting a mortuary • Planning a memorial service • Fulfilling last wishes • Celebrating the beauty of each day • “The nearer she came to death, the more, by some perversity of nature, did she enjoy living.” - Ellen Glasgow, American novelist

20. Complementary Therapies • Music therapy • Aroma therapy • Therapeutic touch • Gentle massage • Animal assisted therapy • Art therapy

21. Spiritual Care Model • Spiritual care flows from relationship, so relationship building is essential with patients, families, facility staff • Spiritual assessment at admission • Develop a care plan • Chaplain visits • Connection to community resources: faith community, clergy, Stephen’s Ministers

22. Spiritual Care Model • Encourage patient and family to set the goals of care • Teamwork and communication with Hospice team members, family, facilities • Documentation • Hospice staff available 24/7 • Nursing • Spiritual and emotional support

23. Spiritual Care Model • Most care happens in the patient’s home • Some hospices have special in-patient hospice units • Particularly helpful when there is: • caregiver breakdown • need for respite care • symptoms difficult to manage at home

24. Spiritual Care Model • Ministry at time of death • Lead prayer at bedside • Provide emotional support • Stay with family until body is picked up by the mortuary • Aftercare • Plan and lead memorial services • For families • For facilities

25. Spiritual Care Model • Grief support • Condolence cards, condolence calls • Series of phone calls and mailings to the bereaved for 13 months • Individual and family counseling • Grief support groups • On-line resources (for example, Griefwords Library) • Special resources for grieving children

26. Grief Support Groups • Newly bereaved groups: for those in the first 3-4 months after the loss (usually 3 or 4 week groups) • General grief groups (6 or 8 week groups) • Loss specific groups: spouse loss, parent loss, child loss • Creative arts groups • Grief education classes (Grief 101, Coping With the Holidays When Grieving)

27. Resources for Grieving Children • The Dougy Center: The National Center for Grieving Children and Families www.dougy.org • Camp Erin: Grief Camps for children and teens www.moyerfoundation.org

28. Special competencies needed • Knowledge of death and dying • Knowledge of grief and loss • Knowledge of basic grief counseling and ability to make referrals • Knowledge about different cultures and different faith traditions: what are their rituals, beliefs and practices around death and dying?

29. Special competencies needed • Caring, pastoral presence • Ability to sit with suffering • Come to terms with your own mortality • Flexibility • Ethics: knowledge, committees, consultations • Team approach • Networking: build a network of clergy and faith communities in your area

30. Unique challenges • Late referrals and short lengths of stay for many patients (2012 data): • 35% of hospice patients died within 7 days of admission • 50% died within 14 days of admission • Hospice works best when the team has time to work with the patient and family • The good news is that many patients (40%) are on hospice service for a month or more so that they and their families can benefit from the support available

31. Unique challenges • Finding balance • Hospice workers deal with the energy of death, dying and grief all day in their work life • Hospice workers need to find a connection to life energy in their life away from work to balance things out • Hospice workers need to practice “radical self care”

32. Unique challenges • Need for peer support • Hospice workers may spend all day visiting patients and not see any of their hospice teammates • Stay connected with the team by phone or email • Stay connected with other chaplains (APC, NACC, local chaplain groups) • Monthly support groups for hospice staff can be helpful

33. Resources General hospice organizations: • National Hospice and Palliative Care Organization: www.nhpco.org • Hospice Foundation of America: www.hospicefoundation.org • The Association for Death Education and Counseling: www.adec.org

34. Resources General hospice books: • Michael Appleton and Todd Henschell. At Home with Terminal Illness: A Family Guide to Hospice in the Home. Englewood Cliffs, N.J.: Prentice-Hall, 1995. • Ira Byock. Dying Well: Peace and Possibilities at the End of Life. New York: Riverhead Books, 1997. • Fairview Hospice. The Family Handbook of Hospice Care. Minneapolis, MN: Fairview Press, 1999. • Patricia Kelley and Maggie Callanan. Final Gifts. New York: Poseidon Press, 1992.

35. Resources General hospice books, continued: • Dale Larson. The Helper’s Journey: Working with People Facing Grief, Loss and Life-Threatening Illness. Champaign, Ill.: Research Press, 1993. • Joanne Lynn and Joan Harrold. Handbook for Mortals: Guidance for People Facing Serious Illness. New York: Oxford University Press, 1999.

36. Resources Grief support organizations: • The Center for Loss and Life Transition www.centerforloss.com This organization based in Colorado was created by Dr. Alan Wolfelt. He has written many books and articles on coping with grief. He also offers the Griefwords Library (articles on grief that you can put on your organization’s website.) • The Compassionate Friends www.compassionatefriends.org Offers grief support to family members who have lost a child of any age.

37. Resources General books about grief: • Alan Wolfelt. Death and Grief: A Guide for Clergy. Muncie, IN: Accelerated Development, 1988. • Alan Wolfelt. Understanding Your Grief and The Understanding Your Grief Journal. Available through The Center for Loss. Excellent self-help books for adult grievers. • Joan Guntzelman. God Knows You’re Grieving: Things to do to help you through. Notre Dame, IN: Sorin Books, 2001.

38. Resources General books about grief, continued: • Therese Rando. How To Go On Living When Someone You Love Dies. 1991. • J. William Worden. Grief Counseling and Grief Therapy, Fourth Edition: A Handbook for the Mental Health Practitioner. 2008.

39. Resources Books for Chaplains: • James Miller and Susan Cutshall. The Art of Being A Healing Presence. Fort Wayne, IN: Willowgreen Publishing, 2001. • Roy Oswald. Clergy Self-Care: Finding A Balance for Effective Ministry. New York: The Alban Institute, 1991.

40. A Final Quote • “ . . . almost everything – all external expectations, all pride, all fear of embarrassment or failure – these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.” -Steve Jobs, co-founder of Apple Computers

41. Discussion • Your questions and comments are welcome