End of Life. End of Life 3/23/2012. Cindy LaCour Social Work Director Kathy Maher Therapeutic Recreation Director

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1 End of Life Cindy LaCour Social Work Director Kathy Maher Therapeutic Recreation Director End of Life Sara Teasdale "There Will Be Rest" "There Will Be Rest" There will be rest, and sure stars shining Over the roof-tops crowned with snow, A reign of rest, serene forgetting, The music of stillness holy and low. I will make this world of my devising Out of a dream in my lonely mind. I shall find the crystal of peace, above me Stars I shall find. 1

2 5 th Leading Cause of Death for those 65 and older. MORTALITY Alzheimer s disease is the sixth-leading cause of death across all ages in the United States. It is the fifth-leading cause of death for those aged 65 and older. According to the 2011 Alzheimer s Disease Facts and Figures Percentage Changes in Selected Causes of Death (All Ages) Between 2000 and 2008 Topics for Discussion 5 Wishes Advanced Directives Aggressive and Non-Aggressive Treatments Where to Die Hospice Care Palliative Care Support Services Caregiver Stress Grief 2

3 5 Wishes The Person I Want to Make Care Decisions for Me When I Can t The Kind of Medical Treatment I Want or Don t Want How Comfortable I Want to Be How I Want People to Treat Me What I Want My Loved Ones to Know pdf Advanced Directives Living Wills A living will is one kind of advanced directive: it is the most reliable Health Care Agent POA DNR Treatment Options at End of Life Aggressive IV Hydration Feeding Tube Radiation Chemotherapy Medications TPN Non-Aggressive Pain Management Oxygen Lip Balm Sips of Water Food only if desired 3

4 Where is this going to take place? Choosing where to die Home Care Nursing Home Medicare.gov Hospital Hospice At home In hospital In ECF Hospice Hospice Myths Hospice is a place Hospice is for people with cancer only Hospice is for the elderly Hospice is expensive Hospice is only available for those who do not have caregivers Hospice provides only custodial care Palliative Care: provides relief from pain, shortness of breath, nausea, and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten nor to postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible; offers a support system to help the family cope; uses a team approach to address the needs of patients and their families; will enhance quality of life; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy. 4

5 Who Is Involved??? Social Workers Doctors Nurses Nursing Assistants Chaplains Pharmacists Physical Therapists Occupational Therapists Complementary Therapists Volunteers Most Importantly THE FAMILY Spirituality Why is Spirituality Important in End of Life Care? Spirituality and religion are important to patients and families Consequently, it is important for health care professionals The spiritual role of the health care provider is crucial to care of the whole person at the end of life 5

6 Twelve Reasons to Ask About Religious Beliefs and Practices 1. Because health care decisions are made by persons who are at once physical, emotional, relational, and spiritual beings 2. To respect the beliefs and customs of patients and families 3. To provide care that is truly patient and family centered 4. To respond to the widespread request by patients for attention to this area by their medical caregivers 5. To build trust and respect religious customs and beliefs 6. To provide an opportunity to inform patients/families of the interdisciplinary care available to them. 7. To better distinguish religious experience and belief considered normative from pathological behavior or belief induced by medications, abnormal grief, or disease progression 8. To better understand when a conflict might occur between goals of medical treatment and patient values/beliefs 9. To accurately identify and treat total pain 10. To help patients draw upon resources that might help them cope with unrelieved physical pain or other symptoms and/or to identify non-physical causes of this pain 11. Because the end of life raises spiritual questions for the majority of persons 12. Because people s religious/spiritual traditions have established rituals and beliefs that influence health care choices, bring comfort and meaning, and facilitate closure or transition at the time of death We re still on the Journey Take the Journey 5 Senses Touch Taste Smell Hear Sight Complimentary Therapies 6

7 Complimentary Therapies During your weakes t momen ts Friends Specific Treatments Aromatherapy Herbal Remedies Meditation Therapeutic Touch Music Therapy Relaxation Techniques Hand/Foot Massage Ricki Saying Goodbye is NEVER Easy 7

8 Saying good-bye is never easy but it can be a wonderful part of our Journey How to find your local Support Group! Alzheimer s Association 24/7 Hotline Alzheimer s Association Website Other Support Services Agency on Aging Senior Centers Physicians Hospitals US Department of Health & Human Services 8

9 Stress Management Laughter heals, gives solace, and is life Accept help Delegate Responsibilities Don t give in to guilt Get informed Join a support group Get connected Commit to staying healthy See your Doctor Look into Respite Care Day Hospitals Adult Care Centers In-Home Respite Short-Term Nursing Homes If you still work, inform your boss what is going on enhancing. Liz Carpenter Contact your Area Agency on Aging (AAA) Contact the Alzheimer s Association Take time for yourself Laugh Exercise Pick your battles Make lists Relax Pace yourself Drive carefully Spend time with your family and friends The KUBLER-ROSS Grief Cycle 7 Stages of Grieving Shock initial paralysis at hearing the bad news Denial trying to avoid the inevitable Anger frustrated outpouring of bottled up emotion Bargaining seeking in vain for a way out Depression final realization of the inevitable Testing seeking realistic solutions Acceptance finally finding the way forward 9

10 Common Symptoms in End-of-Life-Care Symptom How to provide comfort Drowsiness Becoming unresponsive Confusion about time, place, identity of loved ones Loss of appetite, decreased need for food and fluids Plan visits and activities for times when the patient is most alert. Many patients are still able to hear after they are no longer able to speak, so talk as if he or she can hear. Speak calmly to help to re-orient the patient. Gently remind the patient of the time, date, and people who are with them. Let the patient choose if and when to eat or drink. Ice chips, water, or juice may be refreshing if the patient can swallow. Keep the patient's mouth and lips moist with products such as glycerin swabs and lip balm. Loss of bladder or bowel control Skin becoming cool to the touch Labored, irregular, shallow, or noisy breathing Source: National Cancer Institute Keep the patient as clean, dry, and comfortable as possible. Place disposable pads on the bed beneath the patient and remove them when they become soiled. Warm the patient with blankets but avoid electric blankets or heating pads, which can cause burns. Breathing may be easier if the patient's body is turned to the side and pillows are placed beneath the head and behind the back. A cool mist humidifier may also help. How to find your local Support Group! Alzheimer s Association 24/7 Hotline Alzheimer s Association Website Suggested Reading How We Die by Sherwin B. Nuland Hard Choices For Loving People by Hank Dunn The Grace in Dying by Kathleen Dowling Singh Creating Moments of Joy by Jolene Brackey Alzheimer s: A Mother Daughter Journey by Celia Pomeranz 10

11 More Suggested Reading End of Life Resources: ( free) A better care of the dying Caring Compassion ( free) Center to Advance Palliative Care Completing a Life- completingalife.msu.edu Dying Well Hospice Education Institute Promoting Excellence in End of Life Care 11