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Cheryl Shapiro Ferris State University

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Learning Objectives To understand hospice To understand the philosophy of hospice To understand the barriers to hospice admission To understand that conversations about death are crucial To understand how advanced directives can start the conversation about death To start the conversation in ones own life

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The Hospice Philosophy The purpose of hospice is to provide support and care for people in the final phase of a terminal disease so that they can live as fully and comfortably as possibly. Hospice affirms life and regards dying as a normal process. Hospice neither hasten not postpones death. Hospice believes that through personalized services and a caring community, patient and families can attain the necessary preparation for death that is satisfactory to them (National Hospice Organization, NHO, 2010).

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What is Hospice? Takes care of those with a prognosis of six months or less to live Focuses on caring, not curing Works to control pain and other symptoms Recognizes dying as part of the normal process of living Affirms life and neither hastens nor postpones death Offers grief support after the death. Hospice Foundation of America (n.d.)

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Who & Where Hospice Eligibility Requirements A Medicare patient must be certified by a physician as being terminally ill with prognosis of 6 months or less Where do people use hospice? Anywhere the client calls home, including moving to a facility if needed (National Hospice Organization, 2014)

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The inspiration for the modern hospice came from Dame Cicely Saunders. Dr Saunders was an amazing woman of vision and compassion. She received her medical degree in 1957 in the United Kingdom. At that time she became the first modern doctor to specialize in helping dying patients improve their quality of life. Crucial to understanding the emotional dying process is Dr. Elisabeth Kubler-Ross,and her bestselling book, On Death and Dying in 1969. Her book was written after interviewing 500 dying patients. Kubler-Ross pleas for home care and introduces the five stages of grief. Beginning in 1982, Medicare began to offer hospice as a benefit. This changed theory into reality. National Hospice and Palliative Care Organization, NHPCO (2010 ) History of Hospice Care

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1. Death must be accepted 2. The patients total care must be managed by a skilled interdisciplinary team whose members communicate regularly. 3. The common symptoms of terminal disease, especially the treatment of pain in all its aspects, needs to be effectively controlled. 4. The patient and family must be recognized as a single unit of care. 5. An active homecare program should be implemented. 6. An active bereavement program must be provided for family after the death of the patient. 7. Research and education should be ongoing. (Sheehan,D., Forman, W., Kitzes, J. 2003, p.5) DR. SAUNDERS DEVELOPED THE FOLLOWING PRINCIPLES:

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What is the Difference Between Hospice and Palliative Care? Covered by Medicare Palliative Care Focus of care is quality of life not curative Pain and symptom management for those with a chronic, debilitating illness. DRG reimbursement Hospice Care Focus of care is quality of life not curative Strictly for end-of-life care Ideally, a patient would use palliative care first and then flow naturally into hospice care if needed. (National Hospice Organization, 2014)

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Does Hospice Save Money? Hospice cancer patients used less medical resources for non-hospice health needs. (Breitkopf, Stephens, Jatoi,, 2013) Cancer patients who were discharged from hospice used more health care resources. (Breitkopf, Stephens, Jatoi,, 2013) Hospice patients were 16% less likely to die in a hospital and used the emergency depart 11% less than their counterparts. (Alonso-Babarro, et al., 2012) Medicare saved $1.26 for every $1.00 spent on hospice care (Hospice Association of America, 2010)

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Ineffective Use of Hospice 25% of hospice patients are enrolled for less than one week. This, when maximum benefit is shown to be 80-90 days. 25% of deaths occur at home - more than 70% of Americans would prefer to die at home. (Hospice Association of America, 2010)

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Root Cause Analysis Barriers to effective hospice usage Hospice underused Patients are uncomfortable talking about death Doctors are uncomfortable talking about death Hospice = Death Referrals made too late Lack of advanced directive Lack of hospice education

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Culture of Death Denial Society (Whittington, 2011) Entire culture hides and is protected of from death Hospice = death Physicians (Tucker, 2009 ) Physicians lack education about death Physicians view death as a failure This causes a delay in hospice referrals Nurses (Chiplaskey, 2009) Nurses not educated to offer quality end-of-life care. Nurses report they are afraid of speeding up death.

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When Should We Talk About Hospice? When is the right time? Now Now Now - Now Talk about it before its needed

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Why Should I talk about it? If we do not talk about death or hospice we risk losing the opportunity to help someone finish their final tasks of life Wont it diminish their hope for recovery? Gaining meaningful life closure is worth it (Waldrop, Meeker, 2014). Completion of worldly affairs Sense of completion in relationships Sense of meaning about ones individual life Experience love of self Experience love of others Acceptance of finality of life Sense of new self beyond personal loss Sense of meaning about life Surrender to the transcendent, to the unknown

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How to Talk About Hospice Help for Physicians - S.P.I.K.E.S. S etting, listening Skills Environment and knowledge of prognosis P atients Perception Ask them what they know and what is most important I nvite patient to share Information Is it OK if I talk about hospice? Knowledge transmission What does hospice do E xplore Emotions and Empathize Validate their feelings Summarize & Strategize Can you tell me what you understand. I think hospice would be a helpful thing for you (Talebreza, 2014)

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Advanced Directives Can Advanced Directives start the conversation? Advanced directives are the perfect place to start not only the conversation with your patient but to change our entire culture of Death Avoidance. In a survey of 7,900 people, only 26% had an advance directive (NHPCO, 2013) Are advanced directives associated with better hospice care? Patients with advanced directives spent more time in hospice than average They were more likely to die in their preferred setting. (Ache, Harold, 2014)

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Theory Watsons nursing theory of human caring (Chantal, n.d.) Communication and a trusting nurse-patient relationship Patient gains a greater degree of harmony within the mind, body, and soul Creates a healing environment (physical as well as non-physical) Debbie Messer Zlatins Life Themes Psychology theory Focus on how the dying person interprets his/her own reality as opposed to the observer. She studied Life Themes: by interviewing dying people. A dying person who had integrated life themes, were able to keep a sense of who they are and what life meant. Caregiver s who are informed of the dying person's life themes are more helpful to the dying person (Jennings, n.d.)

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ANA Standards Standard 5. Implementation A registered nurse in a nursing role specialty fosters organizational systems that support implementation of the plan. Standard 11. Collaboration Partners with others to effect change and generate positive outcomes though knowledge of the patient or situation. Standard 12. Ethics Delivers care in a manner that preserves and protects patient autonomy, dignity, and rights. (American Nursing Association, 2004)

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Quality and Safety Education for Nurses (QSEN) The goal of QSEN is to prepare and educate nurses. They provide resources to develop the knowledge, attitude, skills, and overall competence of nurses. six focus areas Patient centered care Teamwork and collaboration Evidenced base practice Quality improvement Safety Informatics

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QSEN - Safety Mindfulness as both a means of self-care for the caregiver and a doorway to empathy In patient care (QSEN, 2014) The hospice nurse has all the same stressor including a lack of time that create in inability to job to their satisfaction. Being mindful to use coping strategies like a team approach can make empathy available for patients. Shoshannah, S. (2012)

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Recommendations Start the conversation about death and advanced directives in your personal life How can we talk to our patients if we cant talk to our family RNs should obtain education about end of life care and communication skills Dispel myths about hospice starve or hasten death To provide help to the community, we must continue to educate on the culture of dying. What is a good death?

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Start the Conversation

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References Ache, K., Harrold, J., Harris, P., dougherty, M., casarett, D., (2014) Are advanced directives associated with better hospice care? Journal of Geriatric Society, 62(6): 1091-1096. DOI: 10.111/jgs.12851 Alonso-Babarro, A., Astray-Mochales, J., Domnguez-Berjn, F., Gnova-Maleras, R., Bruera, E., Daz-Mayordomo, A., Cortes, C. (2012). The association between in- patient death, utilization of hospital resources and availability of palliative home care for cancer patients. Palliative Medicine, 27/68 DOI: 10.1177/0269216312442973. Retrieved from: http://pmj.sagepub.com/content/27/1/68 American Nurses Association. (2010). Scope and standards of nursing practice, second ed. Washington, DC: American Nurses Publishing Breitkopf, C., Stephens, E., Jatoi, A. (2013). Hospice in end-of-life patients with cancer: does it lead to changes in nonhospice health care utilization after stopping cancer treatment. American Journal of Hospice and Palliative Medicine. Doi: 10.1177/1049909113488927. Retrieved from http:/ajh.sagepub.com/content/31/4/392 Chantal, C., (n.d.) A pragmatic view of JeanWatsons caring theory. International Association of Human Caring. Retrieved from: http://www.humancaring.org/conted/Pragmatic%20View.pdf

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References Chiplaskey, L. (2009). End-of-life care: Are nurses educationally prepared? Journal of Nursing. Retrieved from: http://rnjournal.com/journal-of-nursing/end-of-life- care-are-nurses-educationally-prepared Hospice Association of America, (2010) Hospice facts and statistics. Retrieved from: http://www.nahc.org/assets/1/7/HospiceStats10.pdf Hospice Foundation of America, (nd).What is hospice? Retrieved from: http://hospicefoundation.org/End-of-Life-Support-and-Resources/Coping-with- Terminal-Illness/Hospice-Services Jennings, B., Gemmill, C., Bohman, B., Lamb, K. (n.d.). Kubler-Ross and other approaches. University of Kentuky. Retrieved from: http://www.uky.edu/~cperring/kr.htm National Hospice and Palliative Care Organization, NHPCO (2010). Preamble and philosophy. Retrieved from: http://www.nhpco.org/ethical-and-position- statements/preamble-and-philosophy National Hospice and Palliative Care Organization, NHPCO, (2010). History of hospice care. Retrieved from: http://www.nhpco.org/history-hospice-care National Hospice Organization, (2014). Hospice Eligibility Requirements. Retrieved from: http://www.nhpco.org/hospice-eligibility-requirements

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References National Hospice Organization, NHPCO (2013). New study on advance directives. Retrieved from: http://www.nhpco.org/press-room/press-releases/new-study- advance-directives Quality and Safety Education for Nurses. (2014). Pre-licensure KSAS. Nursing Outlook Special Issue: Quality and Safety Education. Retrieved from http://qsen.org/faculty-resources/modules/learning-modules/module-three/ Sheehan, D., Forman, W., Kitzes, J. (2003). Hospice and Palliative Care: Concepts and Practice. Sudbury, Ma: Publisher: Jones &Bartlet Shoshannah, S., Walton, J., (2012). Caring for self: The challenges of hospice nursing. Journal of Hospice & Palliative Nursing. DOI: 10.1097/NJH.0b013e31825c1485. Retrieved from: http://journals.lww.com/jhpn/Abstract/2012/10000/Caring_for_Self__The_Challen ges_of_Hospice_Nursing.11.aspx Talebreza, S.,Wildera, E., (2014). The hospice referral. American Family Physician. Retrieved from: http://www.aafp.org/journals/afp.html?cmpid=_van_188 Tucker, T. (2009). Culture of death denial: Relevant or rhetoric in medical education? Journal of Palliative Medicine. DOI: 10.1089/jpm.2009.0234 Whittington, F. (2011). Denying and defying death: The culture of dying in 21 st century America. The Gerontologist, Vol. 51, No. 4, 571579