Sharing Your Wishes

Slide 1:Sharing Your Wishes

Helping Well Seniors, Frail Elders and their Caregivers to Achieve their Medical, Emotional and Spiritual Goals

Slide 2:Sharing Your WishesOffers Helpful Materials

...but it’s all about the conversation.

Slide 3:Communication is Necessary

Elder Eldercare Professional

Slide 5: Today’s Topics

Goals of Sharing Your Wishes Program: Increased communication and patient-centered care Completion of health care proxies Address emotional, physical and social/spiritual needs Reach and motivate learners Use of Sharing Your Wishes material Reaching all types of learners The Four Steps Starting the conversation Possibilities for System Improvement Improving communication, satisfaction and quality Integrating programs into training, policies and procedures

Slide 6:Reaching All Types of Learnersand Motivating Them

Appeal to different learning styles Left and right brain Address: why, what, how and what if Influence Beliefs A serious problem Personal susceptibility Benefits outweigh barriers Self-efficacy Encourage Support Provide Cues for Action

Slide 7:Sharing Your Wishes Materials

Planning Guide Best introduction Invitation Starts conversation Information Booklet Answers Questions Flyer Connects to community support Encourages participants to teach others DVD and Slides Offers slides and stories to encourage discussion and learning

Slide 8:SYW DVD

Slide 9:Related Offerings

Sharing Our Wishes Workshops Four steps toward peace of mind and controlling your future The Wisdom Project The Lessons You’ve Learned and the Love We Need File of Life Needed Information, When and Where You Need It Being Your Best / Ask the BEST Questions Reach your Mind-Body-Spirit Goals and Improve your Care The Satisfaction Skills Four skills to Improve Communication, Reduce Stress and Enhance Forgiveness

Slide 10:Connect and Encourage

Slide 11:Next Steps

Wellness depends on our emotional, physical and social/spiritual health at any age

Slide 13:I’ve been interested in mind-body-spirit for many years, and mind-body-spirit also describes my career path I experienced another mental explosing when I learned that the traditional I’ve been interested in mind-body-spirit for many years, and mind-body-spirit also describes my career path I experienced another mental explosing when I learned that the traditional

Slide 14:Goals

Improved quality of life Emotional, physical and social/spiritual Increased awareness of advance care planning Health care proxies and living wills System change Meeting Medicare/Medicaid and JCAHCO requirements Improving communication, satisfaction and quality Integrating programs into training, policies and procedures Training

Slide 15:Workshop Summary

Sharing Your Wishes (through Advance Care Planning) helps you control your future Gives loved ones peace of mind, instead of tough choices Follow these steps: Think about what’s important to you Select an “agent” to speak for you Complete a Health Care Proxy form Keep your records updated

Slide 17:HospiceOffers Medical, Emotional and Spiritual Care

Services Helps provide the highest possible quality of life for the terminal patient and their family. Emphasizes relief from pain and other symptoms Integrates the physical, psychological and spiritual aspects of patient care Offers a support system to help the family Helps people with six months or less to live The sooner you contact them, the more they can help Niagara Hospice: 439-4417 Buffalo Hospice: 686-8000

Slide 18:Program Offerings

Sharing Our Wishes Workshops Four steps toward peace of mind and controlling your future The Wisdom Project The Lessons You’ve Learned and the Love We Need File of Life Needed Information, When and Where You Need It Being Your Best Reach your Mind-Body-Spirit Goals and Improve your Care The Satisfaction Skills – Find Peace of Mind through Communication, Stress Management and Forgiveness For more information - Contact the Council on Aging at HANCI 285-8224

Slide 19:It’s all about the conversation....

Sharing Your Wishes

Slide 20:Two Programs to Improve Health

Sharing Your Wishes Encourages conversations and support about advance care planning – not just completion of a proxy form Selection of an agent to speak for you at end-of-life Aging Well Encourages: Coordinated approach to health of mind, body and spirit Selection of a “health partner” to support your quality-of-life goals by asking the BEST questions

Slide 21:Program Objectives

Sharing Your Wishes will improve the quality of care and quality of life for the most frail elders, by increasing public awareness and stimulating practice and system changes in health care decision-making Training Funded by a grant from the Community Health Foundationof Western and Central New York

Slide 22:Sharing Your WishesA Community Partnership

Niagara Caregivers Network A coalition of coalitions and organizations that provide medical, emotional and/or spiritual care Coordinates Niagara “Sharing Our Wishes” program Niagara County Council on Aging Administers grant funds Provides “grass roots” leadership Coalition of Agencies in Service to the Elderly (CASE) Represents 32 eldercare agencies in Niagara County Provides professional leadership Center of Renewal Coordinates Niagara Caregivers Network Offers workshops, retreats and links to spiritual services Training

Slide 23:Home Health and Long Term Care training module Basic Skills to Reach Personal, Professional and Organizational Goals

Slide 24:What is Advance Care Planning?

A process of recording your medical wishes, so someone can speak for you if you can’t speak for yourself A chance to think about and achieve all of your medical, emotional and spiritual goals

Slide 25:Advance Planning Directivescan make a difference

What about you? Do you think that health care proxies and living wills are important? Can they really help? Why? How?

Slide 26:What About You?

Death is a profoundly personal experience which can be beautiful or terrible. What experiences have you had, or heard about? What made the experience meaningful? What are two wishes that would make your death a meaningful experience?

Slide 27:Why is Advance Planning Important?

Under NYS law, no one, not even a spouse, has the legal right to make health care decisions, if you cannot speak for yourself Planning gives you loved ones peace of mind, not tough choices …if you communicate your wishes now

Slide 28:This workshop focuses on planning for your medical care,but other needs are also important.

At the end of your life, which is most important? …medical care? …emotional support? …peace of mind? …spiritual comfort?

Slide 29:Who will write your final chapter?

Will you die in a manner consistent with the way you lived, which respects your personal values, spiritual beliefs, culture and dignity? How is our story going to end? Will we die in a manner consistent with the way we lived?? Will our cultural, spiritual, and personal beliefs and values be respected and honored even if we are unable to speak for ourselves?How is our story going to end? Will we die in a manner consistent with the way we lived?? Will our cultural, spiritual, and personal beliefs and values be respected and honored even if we are unable to speak for ourselves?

Slide 30:Advance Care Planning: What Is It?

Process of planning for future medical care in case you are unable to make your own decisions Applies ONLY when you are unable to speak for yourself Important for ALL adults (age 18+) to do A “Gift” to ourselves and our loved ones What is Advance Care Planning? It is a process of planning for future medical care in case you are unable to make your own decisions. It applies ONLY when you are unable to speak for yourself. Anyone of us can face a sudden unexpected illness or injury when we are unable to speak and from which we can recover. This type of situation can occur at any time. Any one can be severely injured in an accident – it is important that ALL adults age 18+ do it. It is a gift to ourselves and our loved ones and alleviates the burdens for our family. Making your wishes helps to avoid potential confusion and conflict among loved ones and between loved ones and providers. It provides increased control and peace of mind. You make decisions regarding your medical care while you are still able to. What is Advance Care Planning? It is a process of planning for future medical care in case you are unable to make your own decisions. It applies ONLY when you are unable to speak for yourself. Anyone of us can face a sudden unexpected illness or injury when we are unable to speak and from which we can recover. This type of situation can occur at any time. Any one can be severely injured in an accident – it is important that ALL adults age 18+ do it. It is a gift to ourselves and our loved ones and alleviates the burdens for our family. Making your wishes helps to avoid potential confusion and conflict among loved ones and between loved ones and providers. It provides increased control and peace of mind. You make decisions regarding your medical care while you are still able to.

Slide 31:Myths and Truths

Myths Something for the very old or very sick Needlessly worry children or loved ones Truths Anyone can be suddenly severely injured Talking about wishes now relieves burden of making decisions in a time of crisis There are myths and truths about Advance Care Planning, as listed on the slide. (Discuss each bullet point listed under the Myths and Truths columns.)There are myths and truths about Advance Care Planning, as listed on the slide. (Discuss each bullet point listed under the Myths and Truths columns.)

Slide 32:Facts:A Health Care Proxy Helps Your Doctor

Video Clips will show: A physician explaining how/why advance directives helps a physician An attorney explaining that a lawyer isn’t necessary A Lawyer Isn’t Necessary

Slide 33:Sharing Your Wishes MaterialsInformation Booklet, Agent Invitation, Planning Guide

Slide 34:Four Steps

Think about what’s important to you Select an “agent” to speak for you, and talk about your wishes Record your wishes, using: The Health Care Proxy form Living Will and other forms Keep your records updated

Slide 35:What’s Important to You?

Keep me alive as long as possible or Withhold or withdraw treatment if: Incurable or irreversible condition with no reasonable expectation of recovery Terminal condition (e.g., very advanced cancer) Permanently unconscious condition (e.g., coma) Minimally conscious condition or Other wishes

Slide 36:Think About Your Wishes

From: New York Living Will

Slide 37:How to Clarify Values and Beliefs

Your values Your personal beliefs Your spiritual beliefs What makes life worth living What really matters to you Your hopes and wishes Speak to your Spokesperson (Agent) Family Spiritual Adviser Physician How do you clarify your values and beliefs? Ask a series of questions: What do you value? What are your personal & spiritual beliefs? What makes your life worth living? What really matters to you? What are your hopes and wishes? After you have thought about these questions, it is important to share them with your Spokesperson (Agent) Family and loved ones Spiritual Adviser Physician to be sure that he/she will honor and respect your wishes You need to assure that your Spokesperson and Physician will honor and respect your wishes. If not, you may have to switch. How do you clarify your values and beliefs? Ask a series of questions: What do you value? What are your personal & spiritual beliefs? What makes your life worth living? What really matters to you? What are your hopes and wishes? After you have thought about these questions, it is important to share them with your Spokesperson (Agent) Family and loved ones Spiritual Adviser Physician to be sure that he/she will honor and respect your wishes You need to assure that your Spokesperson and Physician will honor and respect your wishes. If not, you may have to switch.

Slide 38:It is difficult to consider all possible life-sustaining treatments in advance

You, or your agent, should be prepared to ask these questions: Will treatment make a difference? Does the burden outweigh benefits? Is there hope for recovery? What does patient value? Again, as with Artificial Hydration and Nutrition, you must be educated in order to make an effective decision regarding life-sustaining treatments. Questions to ask about the treatment in question: Will the treatment make a difference or will it only prolong suffering? Do the burdens of the treatment outweigh the benefits? Is there hope for recovery? If so, what will life be like afterward? The final and most important question is: What do you value? Or, if you are the spokesperson, what does the patient value? Would he/she want this treatment? Would he/she be satisfied with the quality of life? And remember, treatments can always be discontinued.Again, as with Artificial Hydration and Nutrition, you must be educated in order to make an effective decision regarding life-sustaining treatments. Questions to ask about the treatment in question: Will the treatment make a difference or will it only prolong suffering? Do the burdens of the treatment outweigh the benefits? Is there hope for recovery? If so, what will life be like afterward? The final and most important question is: What do you value? Or, if you are the spokesperson, what does the patient value? Would he/she want this treatment? Would he/she be satisfied with the quality of life? And remember, treatments can always be discontinued.

Slide 39:How to Choose a Spokesperson

Knows me well Understands what is important to me Will talk about sensitive wishes now Will listen to my wishes Willing to speak on my behalf Would act on my wishes Can separate own feelings from mine Now that you are aware of the importance of the Advance Care Planning process, it’s time to look at a vital feature of the process, choosing a Spokesperson, also known as your Agent. Using the Health Care Proxy form, you designate a Spokesperson, the agent that makes medical care decisions on your behalf should you be unable to do so yourself. But how do you choose an appropriate Spokesperson. Here are some guidelines to help you with your decision: You should choose someone that knows you well; your values, beliefs and wishes. Your Spokesperson must be willing to discuss your wishes and will act upon those wishes if called upon in the future. Your Spokesperson must be able to separate his/her feelings from the situation. They will not be making decisions based upon their wishes, but rather upon what you would want.Now that you are aware of the importance of the Advance Care Planning process, it’s time to look at a vital feature of the process, choosing a Spokesperson, also known as your Agent. Using the Health Care Proxy form, you designate a Spokesperson, the agent that makes medical care decisions on your behalf should you be unable to do so yourself. But how do you choose an appropriate Spokesperson. Here are some guidelines to help you with your decision: You should choose someone that knows you well; your values, beliefs and wishes. Your Spokesperson must be willing to discuss your wishes and will act upon those wishes if called upon in the future. Your Spokesperson must be able to separate his/her feelings from the situation. They will not be making decisions based upon their wishes, but rather upon what you would want.

Slide 40:How to Choose a Spokesperson

Will be available in the future Lives close by or willing to come Could handle responsibility Can manage conflict resolution Meets legal criteria Further tips for choosing an appropriate Spokesperson: It is important that your Spokesperson be readily available. However, convenience is not enough. It is just as important that your Spokesperson can handle the responsibility and the potential conflicts that may arise. Note: Legal criteria is defined as someone that is 18 or older, mentally competent, and not your physician.Further tips for choosing an appropriate Spokesperson: It is important that your Spokesperson be readily available. However, convenience is not enough. It is just as important that your Spokesperson can handle the responsibility and the potential conflicts that may arise. Note: Legal criteria is defined as someone that is 18 or older, mentally competent, and not your physician.

Slide 42:Artificial Hydration and NutritionFluids and Food given by tube

You MUST discuss your wishes with your spokesperson and document in your health care proxy If not documented, your spokesperson cannot decide for you and tubes will be used Sometimes artificial means of giving food and water are used with someone who is seriously injured or nearing the end of their life. Tube feeding and fluid replacements can supplement or replace ordinary eating and drinking by giving a balanced mix of what you need through a tube placed directly in the stomach, upper intestine or a vein. This is called artificial nutrition and hydration. In New York State, you must talk to your spokesperson and alternate about this and you must document that you have done so on your Health Care Proxy form (the Health Care Proxy form in our booklet already includes this statement). If not documented, your spokesperson cannot make decisions regarding artificial hydration or nutrition for you. The phrase “My agent knows my wishes regarding artificial hydration and nutrition” is sufficient. NOTE: When someone is dying, artificial hydration and nutrition will not change the prognosis, will not add comfort, and will not prevent aspiration. Sometimes artificial means of giving food and water are used with someone who is seriously injured or nearing the end of their life. Tube feeding and fluid replacements can supplement or replace ordinary eating and drinking by giving a balanced mix of what you need through a tube placed directly in the stomach, upper intestine or a vein. This is called artificial nutrition and hydration. In New York State, you must talk to your spokesperson and alternate about this and you must document that you have done so on your Health Care Proxy form (the Health Care Proxy form in our booklet already includes this statement). If not documented, your spokesperson cannot make decisions regarding artificial hydration or nutrition for you. The phrase “My agent knows my wishes regarding artificial hydration and nutrition” is sufficient. NOTE: When someone is dying, artificial hydration and nutrition will not change the prognosis, will not add comfort, and will not prevent aspiration.

Slide 43:Artificial Nutrition and Hydration

May save lives when used when the body is healing Long-term use is important with serious nutritional problems Often does not heal or improve quality of life May prolong the dying process

Slide 44:Record Your Wishes

New York Health Care Proxy An important legal document Doesn’t require a lawyer Living Will Not legally binding Helpful To discuss and clarify wishes with agent Documentation if agent’s decision is disputed

Slide 46:Organ Donation Statements are Optional

Slide 47:Signatures for Health Care Proxy

You must sign and date the form Two witnesses must also sign and date Witnesses must be over 18 Cannot be a physician who is treating you Cannot be the person you’ve appointed as agent

Slide 48:Practical Issues: Accessibility

Keep a copy Provide a copy Spokesperson (Agent) Alternate Spokesperson family members / loved ones primary care physician all health care providers primary hospital spiritual adviser Completing your Advance Care Directives and having conversations with your spokesperson, physicians, and loved ones is not enough. You must also make sure that your Advance Care Directives are easily accessible. Keep a copy for yourself and post it in an obvious place. Do not put it in a safety deposit box or file it away. The back cover of the Advance Care Planning booklet features a wallet card. Complete the card, tear along the perforations and place it with your insurance card. If you arrive unconscious at the Emergency Department, the staff will be notified of your Health Care Proxy when they search for your ID and insurance card. For those who are chronically ill or are near the end of their lives, it may help to keep ALL Advance Directives easily marked on the refrigerator or near the phone to assure it is available in the event of an emergency. Be sure to discuss your wishes with the person you designate as Spokesperson (Agent), your Alternate Spokesperson (Alternate Agent), your loved ones and your physicians. Be sure to give copies of your Advance Care Directives to your Spokesperson (Agent), your Alternate Spokesperson (Alternate Agent), family members and other loved ones, primary care providers and all health care providers, your primary hospital and spiritual adviser.Completing your Advance Care Directives and having conversations with your spokesperson, physicians, and loved ones is not enough. You must also make sure that your Advance Care Directives are easily accessible. Keep a copy for yourself and post it in an obvious place. Do not put it in a safety deposit box or file it away. The back cover of the Advance Care Planning booklet features a wallet card. Complete the card, tear along the perforations and place it with your insurance card. If you arrive unconscious at the Emergency Department, the staff will be notified of your Health Care Proxy when they search for your ID and insurance card. For those who are chronically ill or are near the end of their lives, it may help to keep ALL Advance Directives easily marked on the refrigerator or near the phone to assure it is available in the event of an emergency. Be sure to discuss your wishes with the person you designate as Spokesperson (Agent), your Alternate Spokesperson (Alternate Agent), your loved ones and your physicians. Be sure to give copies of your Advance Care Directives to your Spokesperson (Agent), your Alternate Spokesperson (Alternate Agent), family members and other loved ones, primary care providers and all health care providers, your primary hospital and spiritual adviser.

Slide 49:Practical Issues: Review and Update

Periodically Major life events Newly diagnosed chronic illness Advancing chronic illness After complicated life-sustaining treatments Advance Care Directives are not intended to be static documents. Once completed, your Advance Care Directives should be reviewed and updated as your situation changes. Review your documents periodically to ensure their continued accuracy. Review your documents after major life events such as divorce, birth of a child, death of a spouse, as you may wish or need to choose a new Spokesperson (Agent). Review after a newly diagnosed chronic illness or as a chronic disease advances. Your wishes may change as your health status changes. You also need to review and update after complicated life-sustaining treatments. Now that you have gone through it, would you do it again? If your wishes change after your documents have been completed, an entirely new set of documents reflecting your wishes must be written, signed and witnessed. It is important to remember that you can always revoke your NYS Health Care Proxy and/or Living Will documents at any time.Advance Care Directives are not intended to be static documents. Once completed, your Advance Care Directives should be reviewed and updated as your situation changes. Review your documents periodically to ensure their continued accuracy. Review your documents after major life events such as divorce, birth of a child, death of a spouse, as you may wish or need to choose a new Spokesperson (Agent). Review after a newly diagnosed chronic illness or as a chronic disease advances. Your wishes may change as your health status changes. You also need to review and update after complicated life-sustaining treatments. Now that you have gone through it, would you do it again? If your wishes change after your documents have been completed, an entirely new set of documents reflecting your wishes must be written, signed and witnessed. It is important to remember that you can always revoke your NYS Health Care Proxy and/or Living Will documents at any time.

Slide 50:Advance Care Planning is an opportunity to think about our emotional, social or spiritual wishes

Slide 51:Importance of Emotional and Spiritual NeedsNiagara County Survey

Training N = 11

Slide 52:I’ve been interested in mind-body-spirit for many years, and mind-body-spirit also describes my career path I experienced another mental explosing when I learned that the traditional I’ve been interested in mind-body-spirit for many years, and mind-body-spirit also describes my career path I experienced another mental explosing when I learned that the traditional

Slide 53:HospiceOffers Medical, Emotional and Spiritual Care

Services Helps provide the highest possible quality of life for the terminal patient and their family. Emphasizes relief from pain and other symptoms Integrates the physical, psychological and spiritual aspects of patient care Offers a support system to help the family Helps people with six months or less to live The sooner you contact them, the more they can help Niagara Hospice: 439-4417 Buffalo Hospice: 686-8000

Slide 54:Workshop Summary

Sharing Your Wishes (through Advance Care Planning) helps you control your future Gives loved ones peace of mind, instead of tough choices Follow these steps: Think about what’s important to you Select an “agent” to speak for you Complete a Health Care Proxy form Keep your records updated

Slide 55:Program Offerings

Sharing Our Wishes Workshops Four steps toward peace of mind and controlling your future The Wisdom Project The Lessons You’ve Learned and the Love We Need File of Life Needed Information, When and Where You Need It Being Your Best Reach your Mind-Body-Spirit Goals and Improve your Care The Satisfaction Skills – Find Peace of Mind through Communication, Stress Management and Forgiveness For more information - Contact the Council on Aging at HANCI 285-8224

Slide 56:The Wisdom Project

Share Your Wisdom… What are you proud of? What have you learned? How have you been influenced by: Family, friends or neighbors? Love, religion or spirituality? Major events in your life? And Discover More Love What gives you peace? What helps you feel closer to the world around you? What helps you to feel accepted? For more information - Contact RSVP at HANCI 285-8224

Slide 57:File of Life

This slide will have a picture of the File of Life forms and the refrigerator pouch. Keeps all your medical information in one place On your refrigerator In your wallet For more information - Contact the Office for Aging 438-4020

Slide 58:Being Your Best is a plan foryour mind, body and spirit

Imagine your goals Check your signs Choose your steps Learn each time For more information - Contact the Council on Aging at HANCI 285-8224 Explain that this poem is the outline for the rest of the workshop, as well as a plan that can help them to reach their goals. Reference: CSG pp 4-6Explain that this poem is the outline for the rest of the workshop, as well as a plan that can help them to reach their goals. Reference: CSG pp 4-6

Slide 59:Use the ‘Satisfaction Skills’ To Communicate, Manage Stress and/or To Pray

Accept Relax Forgive Awareness Listen Focus Affirm Compliment Praise Assert I think… I want… I feel… Note: Contact info to be included For more information - Contact the Council on Aging at HANCI 285-8224 The following illustrations can be used to discuss the use of the Satisfaction Skills as “pathways to prayer” Awareness – “Staying in the present moment” is a central teaching of the mystical traditions of many religions Affirm - Thanking God (e.g., Halleluiah!) is a tradition embraced by many religions Assert – Many faith teach the use of a “petitioner’s prayer” or discussions with the Spirit (e.g., “Give us this day our daily bread” “I need help.” These discussions involve both assertiveness (i.e,. Stating your needs) and awareness (i.e., listening for a response) Accept – Acceptance or forgiveness is prominent in many faiths (e.g., “Thy will be done.”) The following illustrations can be used to discuss the use of the Satisfaction Skills as “pathways to prayer” Awareness – “Staying in the present moment” is a central teaching of the mystical traditions of many religions Affirm - Thanking God (e.g., Halleluiah!) is a tradition embraced by many religions Assert – Many faith teach the use of a “petitioner’s prayer” or discussions with the Spirit (e.g., “Give us this day our daily bread” “I need help.” These discussions involve both assertiveness (i.e,. Stating your needs) and awareness (i.e., listening for a response) Accept – Acceptance or forgiveness is prominent in many faiths (e.g., “Thy will be done.”)

Slide 60:If Help Is Needed with Other Issues

Niagara County Office for the Aging 438-4020 Niagara County Help Line (Mental Health Association) Niagara Falls ~ 282-5432Lockport ~ 433-5432North Tonawanda ~ 692-8800 Health Association of Niagara County, Inc. (HANCI) 285-8224 Niagara Hospice 439-4144 Center of Renewal at Stella Niagara 754-7376

Slide 61:Help Others Help Themselves!

Anyone can – and should – encourage others to complete a Health Care Proxy form

Slide 62:Tips for Helping Others

Training

Slide 63:Discussing Sensitive Issues

“Put yourself in their shoes” Don’t judge Use your own experience as an example, not the “right way” or the “best way” Respect differences Cultural, spiritual and personal Actively listen Summarize what you’re hearing • Training

Slide 64:Don’t Preach

Encourage others to think about their goals Don’t assume that your path and your answers will work for everyone. When someone shares his/her story with you, treat it as sacred and confidential Briefly share your story, but spend more time: Listening to needs and concerns Suggesting options (e.g., where to find health care proxy forms, or find support) Respect individual choices! Training

Slide 65:The Schiavo Case

All agree: Advance Directives would have helped Make your wishes known Document your wishes in Advance Directives Case reinforces need for everyone to have a health care proxy Remain neutral Stick to the facts We do not know all of the details Training