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HospiceCheryl ShapiroFerris State University

1Learning Objectives

To understand hospice To understand the philosophy of hospiceTo understand the barriers to hospice admissionTo understand that conversations about death are crucialTo understand how advanced directives can start the conversation about deathTo start the conversation in ones own life

I hope you had time to think about the questions I posted.Encouraging you to start the conversation is an important objective for this seminar.If you aren't comfortable talking to your family, how will you help your patients.2The 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).

3What 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 livingAffirms life and neither hastens nor postpones deathOffers grief support after the death. Hospice Foundation of America (n.d.)

4Who & WhereHospice Eligibility Requirements A Medicare patient must be certified by a physician as being terminally ill with prognosis of 6 months or lessWhere do people use hospice?Anywhere the client calls home, including moving to a facility if needed

(National Hospice Organization, 2014)

5The 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

6Death must be acceptedThe patients total care must be managed by a skilled interdisciplinary team whose members communicate regularly.The common symptoms of terminal disease, especially the treatment of pain in all its aspects, needs to be effectively controlled.The patient and family must be recognized as a single unit of care. An active homecare program should be implemented.An active bereavement program must be provided for family after the death of the patient.Research and education should be ongoing .

(Sheehan,D., Forman, W., Kitzes , J. 2003, p.5)

Dr. Saunders developed the following principles:

Dr Saunders was such a visionary, that these principles are still the core expectations today7What is the Difference Between Hospice and Palliative Care?Covered by MedicarePalliative CareFocus of care is quality of life not curativePain and symptom management for those with a chronic, debilitating illness. DRG reimbursementHospice CareFocus of care is quality of life not curativeStrictly 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)

for example, someone with Lou Gehrigs disease would need home care equipment and emotional support, but they are not dying yet8Does 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)

In a study of 207 patients who died from cancer, a retrospective review was done which showed positive findings. Hospice patients not only used emergency rooms less they actually lived longer as measured from the time of their last chemo treatment.

Another study in Spain comparing areas that provided palliative home care for dying patients, with those that did not. It showed that: Patients were 16% less likely to die in a hospital. In addition patients used the emergency depart 11% less.

According to Hospice Association of Americas report ,Hospice Facts & Statistics Medicare saved $1.26 for every $1.00 spent on hospice care

9Ineffective Use of Hospice25% 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)

10Root Cause AnalysisBarriers to effective hospice usageHospice underusedPatients are uncomfortable talking about deathDoctors are uncomfortable talking about deathHospice = DeathReferrals made too lateLack of advanced directiveLack of hospice education

With all the emotional beauty, good medical care and financial savings, why dont people use hospice more? What are the barriers?

11Culture of Death Denial

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

We live in a culture that hides and is protected from death. We dont talk about it and if we did, we are pretty sure someone would think it was inappropriate. Historically, dying, was viewed as natural and expected, has become medicalized and unwelcome. (Whittington , 2011)Modern mortuaries have brought physical distance between death and our lives. Finally, The word hospice is equivalent to death.Out physicians are members of this same society, they are taught that death is a failure and must be avoided.This leads to a lack of honest, compassionate communication with patients which delays hospice referrals. Nurses too are ill-equipped to offer quality end-of-life care to patients and families when finished with an undergraduate degree.It happens too often that nurses do not have the knowledge and skill to effectively manage pain. Nurses also report they are afraid of speeding up death.

12When Should We Talk About Hospice?

When is the right time? Now Now Now - NowTalk about it before its needed

When is the right time to talk about hospice? The answer is now! Thats right, although it is difficult for everyone, it best to talk about it before you need it. Share your wishes with your family.

13Why 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 affairsSense of completion in relationships Sense of meaning about ones individual lifeExperience love of self Experience love of others Acceptance of finality of life Sense of new self beyond personal lossSense of meaning about lifeSurrender to the transcendent, to the unknown

Making the choice to enroll in hospice prompts someone to make meaningful life choices for this final stage. These choices are satisfying closures for themselves and familys. These tasks includes completion of worldly affairs, sense of completion in relationships, sense of meaning about ones individual life, experienced love of self, experienced love of others, acceptance of finality of life sense of new self beyond personal loss, sense of meaning about life in general and surrender to the transcendent, to the unknown

Does the hospice choice diminish hope of recovery? Yes, but it opens the door to finishing important tasks form this stage of life.

14How to Talk About HospiceHelp for Physicians - S.P.I.K.E.S.

S etting, listening Skills Environment and knowledge of prognosisP atients Perception Ask them what they know and what is most importantI nvite patient to share Information Is it OK if I talk about hospice?Knowledge transmission What does hospice doE xplore Emotions and Empathize Validate their feelingsSummarize & StrategizeCan you tell me what you understand. I think hospice would be a helpful thing for you

(Talebreza, 2014)

As I mentioned, physicians may not know how to talk about a hospice referral either.Ill read some examples of perception

Can you tell me what you know about your illness?Has anyone talked to you about what to expect with this disease? What did they say?

What is most important to you?Can you share with me what you are hoping for?

Have you heard of hospice? Can you tell me what you know?Have you had experience with hospice with a loved one?

15Advanced DirectivesCan 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 averageThey were more likely to die in their preferred setting. (Ache, Harold, 2014)

Patients with advanced directives spent more time in hospice than averageThey were more likely to die in their preferred setting.

16TheoryWatsons nursing theory of human caring (Chantal, n.d.)Communication and a trusting nurse-patient relationshipPatient gains a greater degree of harmony within the mind, body, and soulCreates 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.)

Although many theories would apply I chose to ponder how these 2 apply.Watsons nursing theory of human caringFocuses on communication and a trusting nurse-patient relationship. Helps the patient gain a greater degree of harmony within the mind, body, and soul.Creates a healing environment at all levels (physical as well as non-physical)

Psychology theory Debbie Messer Zlatins Life Themes Put the focus on how the dying person interprets his/her own reality as opposed to the observer.Through interviews with dying people, she studied Life themes: If a dying person had integrated life themes, they were able to keep a sense of who they are and what life meant.caregivers who are informed of the dying person's life themes are more helpful to the dying person.

17ANA StandardsStandard 5. ImplementationA 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)

18Quality 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 areasPatient centered careTeamwork and collaborationEvidenced base practiceQuality improvementSafetyInformatics

19QSEN - SafetyMindfulness 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)

QSENs objective is to Explore mindfulness as both a means of self-care for the caregiver and a doorway to empathy in patient care. Shoshannah, explored the stresses of Hospice nurses and how they coped with them. One of the successful coping methods was using the team approach. The nurse must trust that together with the team the patient will have their needs met.

20Recommendations

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

21Start the Conversation

I have to say this one more time. Start the conversation.Thank you for listening22ReferencesAche, 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.12851Alonso-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/27/1/68American Nurses Association . (2010). Scope and standards of nursing practice, second ed. Washington, DC: American Nurses PublishingBreitkopf, 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/31/4/392Chantal, 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

23ReferencesChiplaskey, 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.pdfHospice 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.htmNational Hospice and Palliative Care Organization, NHPCO (2010). Preamble and philosophy. Retrieved from: http://www.nhpco.org/ethical-and-position-statements/preamble-and-philosophyNational 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-requirements24ReferencesNational Hospice Organization, NHPCO (2013). New study on advance directives. Retrieved from: http://www.nhpco.org/press-room/press-releases/new-study-advance-directivesQuality 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 &BartletShoshannah, 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_Challenges_of_Hospice_Nursing.11.aspxTalebreza, S.,Wildera, E., (2014). The hospice referral. American Family Physician. Retrieved from: http://www.aafp.org/journals/afp.html?cmpid=_van_188Tucker, 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 21st century America. The Gerontologist, Vol. 51, No. 4, 571579

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