ResourceGuide2019

RESOURCE GUIDE HOSPICE PALLIATIVE CARE IN THE BOW VALLEY

Prepared by the PCSBV Resource Guide Team September, 2019

START with the Section that best meets your needs at this time, in any order you please. For inquiries about palliative health services and care, START by calling Bow Valley Home Care (A.K.A. Community Care; the names are used interchangeably) at 403-678-7200. For inquiries about education, or general information on palliative care, START by calling the Executive Director of the Palliative Care Society of the Bow Valley at 403-707-7111.

“Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it’s the only thing that ever has.”

Margaret Mead

We welcome your feedback on this edition of the resource guide! Please email your comments to ed@pcsbv.ca

If you would like a hard copy of this resource guide, please call 403 707 7111.

Dedication

The guiding lights for this resource guide are those who have gone down the path before us, and inspired us to help others. Our work is dedicated to the memory of our mothers and fathers, husbands and wives, our children, sisters and brothers, our grandchildren, grandmas and grandpas, and to our beloved friends and neighbours.

TABLE OF CONTENTS

SECTION

PAGE

INTRODUCTION

• Purpose of Guide • Definition of Palliative Care • Model of Hospice Palliative Care • Meet Your Team

DISEASE MANAGEMENT

• Definition of Disease Management • How to Talk to My Doctor • Doctors’ Offices in the Bow Valley • MAiD

PHYSICAL CARE AND SUPPORT

• Physical Changes • Who Should I Talk To • Symptoms • Bow Valley Resources

SOCIAL SERVICES AND SUPPORT

• Talking With My Children & Grandchildren • Conversations With My Family • Coping Strategies • Community Services and Support • Caregiver Support

SPIRITUAL CARE AND SUPPORT

• Meaning of Spirituality • Pastoral Care Resources in the Bow Valley • Palliative Volunteers • Mindfulness Meditation • The Role of Nature • Other Bow Valley Resources

END-OF-LIFE CARE AND DEATH MANAGEMENT

• Personal Directive • Goals of Care • Power of Attorney • Will • Advance Care Plan • Legacy • Dying at Home • Planning Your Funeral • Final Days • MAiD

LOSS AND GRIEF 41 • How Grief Works • Who Can I Talk To • Other Resources (Internet, Social Media, Radio, Books)

COMMUNITY SERVICES AND SUPPORT

• Nursing Care • Medical Supplies • Transportation • Palliative Volunteers • FCSS • Respite • Caregiver Support • Community Supports • Regional, Provincial & National Supports

ADMINISTRATION OF DYING

• Financial Assistance at the End of Life • Financial Assistance for Caregivers • Personal Directive and Power of Attorney • “I’m Dead: Now What?” • Funeral and Legal Services

INVENTORY OF HOSPICE PALLIATIVE RESOURCES, FIRST NATIONS, MORLEY

• First Nations peoples may also access many of the above resources.

THE BOOK OF LINKS

BOOK AND MUSIC LIST

INTERPROFESSIONAL EDUCATION AND LEARNING

CALGARY HOSPICES AND RESOURCES

INTRODUCTION

www.palliativecarebowvalley.com

INTRODUCTION

❦ WHAT IS THE PURPOSE OF THIS GUIDE? If you, or someone you love of any age, have a terminal illness, you may find yourself navigating an entirely new world of specialists, referrals, test results, treatments, medications and difficult decisions. Being ill is hard enough, without having to learn the ins and outs of the health care system at the same time. The purpose of this guide is to help you plan in advance of a terminal illness, and to navigate the unsettled waters of hospice palliative care in a complex heath care system. We want you to know what help is available to you and that you are not alone. We recognize that many people in our rural Bow Valley Communities need information on hospice palliative care and how to access community and regional resources. This guide is an “inventory” of such resources in the Bow Valley. It has been prepared especially for you, your family and other loved ones using what we have learned from regular folks in our Bow Valley communities, health professionals and volunteers of the Palliative Care Society of the Bow Valley. There is a lot of information in this Guide. Focus on the Sections that are relevant to you, rather than reading all the Sections, one after the other. Other Sections can be read later. Please note: Stoney Nakoda First Nation peoples from the Morley Reserve may access the Bow Valley resourc- es included in the first eight Sections of this Guide. Otherwise, the local Town of Morley resources are identified on a table is Inventory of Hospice Palliative Resources, First Nations, Morley on page 61. ❦ WHO WILL USE THIS GUIDE? This guide is for those who want to plan their health care in advance and those who have been diagnosed with a terminal illness, which may include: advanced cancer, heart disease, lung disease, kidney disease; and terminal neurological diagnoses such as Lou Gehrig’s Disease (ALS). Family members, friends, health care providers and others may also find it useful. ❦ HOW IS THIS GUIDE ORGANIZED? The model shown on the next page accurately defines the aspects that will be covered, when identifying hos- pice palliative care community resources in our communities. At the centre are the Patient and Family, who are affected by any, or all, of the issues shown. No subject stands alone; there is some overlap and cross referenc- ing to other Sections. The model’s intent is also to show holistic, or intimately connected, aspects of your care. It takes into account mental and social factors, and not just physical symptoms of your illness.

Specific web pages can be found in the Book of Links

www.palliativecarebowvalley.com

CHPCA = Canadian Hospice Palliative Care Association CHPCA Aspects Associated with Terminal Illnesses and Bereavement

DISEASE MANAGEMENT means working with your doctor to determine the best course of action to manage your illness. PHYSICAL CARE AND SUPPORT means working with your health care team to manage your physical symptoms that arise as you progress through palliative care, such as pain, and mobility and nutrition issues. SOCIAL SERVICES AND SUPPORT means our cultural response to dying, including values, beliefs, and our relationships with family, friends and community. Questions arise such as, “ What should I say about this? Who can I talk to? Where can I go to get help?” SPIRITUAL CARE AND SUPPORT means exploring spiritual meaning in times of terminal illness. It is reflecting on how such illness has changed your life, family and community. Community resources are available to provide compassion and guidance. END-OF-LIFE CARE (AND DEATH MANAGEMENT) means how you want to say goodbye. It involves gift giving, rites and rituals, funeral preparations and life closure activities. LOSS AND GRIEF means learning to share your sadness about your condition with those you love and others you care about. It means grief is a highly personal response and takes its own path. COMMUNITY SUPPORT means those supports, provided by local and regional programs and businesses, which are practical in nature. ADMINISTRATION OF DYING means the management of your legal, financial and funeral affairs. It includes a focus on your expenses and what resources are available to help you.

INVENTORY OF RESOURCES, STONEY NAKODA FIRST NATIONS, MORLEY means hospice palliative resources located locally in the Town of Morley on the reserve.

❦ WHAT IS HOSPICE PALLIATIVE CARE? Hospice palliative care is whole-person care that aims to relieve suffering and improve the quality of living and dying. It addresses physical, psychological, social, spiritual and practical issues, and associated expectations, needs, hopes and fears. Remember, hospice care, commonly referred to as end-of-life care, is only a part of palliative care. Hospice palliative care helps people, who have been diagnosed with a terminal illness, live out their remaining time in comfort and dignity. It is helpful not only when a person is approaching death, but also at earlier stages of an illness. It can also help families meet the challenges they face when a loved one’s illness cannot be cured. When facing the threat of death, you have to make a painful transition, from thinking of yourself as “somebody who might die”, to “someone who will die”. The transition consists of many stages and it is difficult no matter

what your age and the nature of your illness. Phases include: • The beginning, or early phase as you face the threat of death • An illness phase, in which your pattern of living becomes altered by physical decline • The final phase, in which you are approaching death

The image below illustrates the transition from the beginning phase, to the final phase and beyond. It has been prepared by the CHPCA and adopted across Canada to help people understand the terminal illness progression.

CHPCA Model for the Role of Hospice Palliative Care During Illness

Therapy to modify disease

Focus of Care

Hospice Palliative Care Therapy to relieve suffering and/ or improve quality of life

Presentation/ Diagnosis

Patient’s Death

Time

Advanced Life-Threatening

Illness

Bereavement

Acute

Chronic

End-Of-Life Care

Starting on the left, palliative care is introduced early, when a diagnosis of terminal illness is made. Treatment to modify the original disease is often provided hand-in-hand with palliative care. As you travel across the im- age, you see that less and less disease treatments are provided, while more and more hospice palliative care is provided, right to end-of-life care. At the far right of the illustration, you see Bereavement, which is grief support provided to families and others, after a person’s death. ❦ WHAT IS AN INTEGRATED PALLIATIVE APPROACH TO CARE? In urban centres, palliative care is a specialty. The difference in rural communities is that palliative care is a part of a health care team’s every day practice (nurses, doctors, psychologists, occupational & physical therapists etc.). An integrated palliative approach makes key aspects of palliative care available to individuals and families during a terminal illness and in all care settings. (For more, see The Book of Links). “When people have access to hospice palliative care services integrated with their other care, they report fewer symptoms, better quality of life, and greater satisfaction with their care. The health care system reports more appropriate referrals, better use of hospice care, fewer emergency room visits and hospitalizations, and less use of ineffective, intensive interventions in the last days of life.” (CHPCA, The Way Forward, 2015, page 13)

www.palliativecarebowvalley.com

❦ WHERE DO I GO TO RECEIVE HOSPICE PALLIATIVE CARE? Hospice palliative care can be delivered in many care settings. These include your own home, a lodge, in the Emergency department or the acute care unit of your local hospital, or in a long-term care facility. You and your family will decide where the best place is for you to receive care, and it will change over time, depending on your circumstances. You and your family are in charge of where you go. In the next Section, you will meet some of the care providers who will look after you in these various settings. ❦ MEET YOUR TEAM You are not alone on this journey and your health care team will help you. Your caregivers plan the best hospice palliative care based on your needs. They will: • Learn about your particular needs • Meet with you and your caregivers to talk about your options • Prepare for the place you will receive care Please talk to anyone on your team about any issues that are important to you. You may have many questions or concerns about many topics such as: • Your symptoms • What you and your caregivers expect for your future

• Your hopes and fears • Your future planning • Grief and bereavement

Your team will make sure your concerns are addressed. If they are not effectively addressed, you should be confident in asking for solutions (see Disease Management , pages 9-14). Continuity of care and follow-up are as important as treatment of your symptoms.

Doctor and Nurse Your doctor or nurse will work with you and others to help control any symptoms that cause you discomfort or distress. They can also help with: • Supporting you and your caregivers through your illness • Discussing and helping you decide the best care for you, by reviewing your Goals of Care (GOC)

• Informing you about and helping you with Advance Care Planning (ACP). Read more about this in Disease Management and Physical Care & Support • Finding hospice palliative care resources in our communities • Adjusting from hospital care, to home care

Nurses, which may include Registered Nurses (RNs), Licensed Practical Nurses (LPNs), or Personal Care Aides (PCAs), provide regular assessments and care. They are familiar with your medical needs and help you with many daily tasks such as: • Helping to take medications

• Changing bandages and cleaning wounds • Recovering from an injury or health problem • Checking your overall health • Creating a patient-centered care plan • Checking and managing your pain

You may want to discuss a referral, with your nurse or doctor, to the Alberta Health Services (AHS) Rural Palliative Consultation Team from the Calgary Zone. They are a team of specialized nurses and doctors who provide con- sultative support to rural primary care nurses and doctors outside the Calgary city limits. Their goal is to improve palliative care and quality of life for people with a terminal illness.

Counsellors Counsellors, such as social workers, financial advisors and psychologists, help you and your caregivers cope with the impact of your illness. They are there to help you with many types of needs. These include emotional, financial and any practical needs. They can give you: • Individual and family counselling about coping with illness, loss and grief • Information about practical and financial resources • Information about hospice palliative care resources in our communities • Support with transitions from home to hospital and back again • Organizing family meetings with your health care team • Information about Advance Care Planning Physical and Occupational Therapists These therapists will check to see how well and how safely you move around and function. They also check to see how you manage your daily activities. This includes getting dressed and taking a bath. They may also recommend equipment to help you such as: • Wheelchairs and walkers • Bedside commodes • Hospital beds • Bath chairs Spiritual Care Spiritual care providers are there to help you find what you need and what is important to you. You do not need to belong to any specific religion to receive support. Spiritual care includes: • Exploring spiritual meaning in times of illness • Reflecting on how illness has changed your life, family and community

• Providing encouragement and support • Providing support for loss and grief • Providing a time for prayer, meditation and reflection

Dietitian Dietitians help you with nutritional needs due to your illness. They will make recommendations to help you keep the safest and most satisfying diet.

Respiratory Therapist Respiratory therapists may check to see if you need oxygen at home. They will also help you learn about fund- ing available for home oxygen.

www.palliativecarebowvalley.com

Trained Palliative Volunteers These volunteers provide compassionate companionship in many different ways and may be found in the Canmore Hospital, lodges, your homes, or long-term care facilities. They have special training provided by Alberta Health Services, and their work is coordinated by the Bow Valley Volunteer Coordinator located at the Canmore Hospital.

Write your questions, or notes, here. You might want to list the names and contact information of “your team”.

DISEASE MANAGEMENT

www.palliativecarebowvalley.com

DISEASE MANAGEMENT

❦ WHAT DOES DISEASE MANAGEMENT MEAN? Let’s suppose that you have just received news from your doctor that your cancer, or any illness, has progressed and, despite previous treatments, your disease is terminal. This scenario or something similar is perhaps what you may be facing right now. As the news of your diagnosis sinks in, questions you have will emerge about your diagnosis: questions that need answers. Although you may feel you are the only person in the world facing this crisis, we want you to know that you are not alone.

❦ WHAT NOW? When you have received the diagnosis of a terminal illness, your life may dramatically change. In addition to the

physical changes, you may experience a wide range of issues including: • Having questions regarding the progression of symptoms of your disease • Changes in your roles and relationships • Loss of opportunity, income and financial security • Changes in traditional family dynamics

There are people and other resources in the Bow Valley that can offer you and your family support for your physical and emotional needs through an integrated approach to hospice palliative care.

❦ WHAT IS HOSPICE PALLIATIVE CARE? Hospice palliative care is whole-person care that aims to relieve suffering and improve the quality of living and dying. It addresses physical, psychological, social, spiritual and practical issues, and associated expectations, needs, hopes and fears. ❦ WHAT WILL YOU FIND IN THIS SECTION? This Section of the Resource Guide offers a list of several resources that you can access related to understand- ing the progression of your illness. It will also direct you to resources to better manage the symptoms associ- ated with the progression of your illness and end-of-life care. ❦ WHAT KINDS OF DISEASES REQUIRE HOSPICE PALLIATIVE CARE? Most hospice palliative care focuses on cancer but other diseases include COPD, advanced heart, kidney and lung disease, and terminal neurological diseases, such as ALS. ❦ WHERE CAN I FIND MORE INFORMATION ON THESE NON-CANCER DISEASES? DISEASE WEB SITE

Alberta site: www.alsab.ca Canadian site: www.als.ca

ALS (Lou Gehrig’s Disease)

COPD

Canadian site: www.lung.ca/copd

Advanced Heart Disease - American Heart Association American site: www.heart.org Follow links to “Living with Heart Failure”

The key to Disease Management lies in having a good understanding of the progression of your disease. Developing a patient-centred care plan, hand-in-hand with your care team, is very important. It will help meet the unique needs of you and your family.

www.palliativecarebowvalley.com

❦ HOW DO I TALK WITH MY DOCTOR ABOUT DISEASE MANAGEMENT? 1. Serious Illness Conversation Guide is a guide used by doctors when they have conversations with you about your illness and how it is managed. Referring to it will help you gain an understanding of your doctor’s ap- proach to helping you face your illness, learn what to expect going forward, and identify your health care goals.

CONVERSATION FLOW

PATIENT-TESTED LANGUAGE

“I’d like to talk about what is ahead with your illness and do some thinking in advance about what is important to you so that I can make sure we provide you with the care you want — is this okay? ”

1. Set up the conversation • Introduce purpose • Prepare for future decisions • Ask permission

2. Assess understanding and preferences

“What is your understanding now of where you are with your illness?” “How much information about what is likely to be ahead with your illness would you like from me?” “I want to share with you my understanding of where things are with your illness...” Uncertain: “It can be difficult to predict what will happen with your illness. I hope you will continue to live well for a long time but I’m worried that you could get sick quickly, and I think it is important to prepare for that possibility.” OR Time: “I wish we were not in this situation, but I am worried that time may be as short as ___ (express as a range, e.g. days to weeks, weeks to months, months to a year).” OR Function: “I hope that this is not the case, but I’m worried that this may be as strong as you will feel, and things are likely to get more difficult.” “What are your most important goals if your health situation worsens?” “What are your biggest fears and worries about the future with your health?” “What gives you strength as you think about the future with your illness?” “What abilities are so critical to your life that you can’t imagine living without them?” “If you become sicker, how much are you willing to go through for the Possibility of gaining more time?” “How much does your family know about your priorities and wishes?” “I’ve heard you say that ___ is really important to you. Keeping that in mind, and what we know about your illness, I recommend that we ___. This will help us make sure that your treatment plans reflect what’s important to you.” “How does this plan seem to you?” “I will do everything I can to help you through this.”

3. Share prognosis • Share prognosis • Frame as a “wish…worry”, “hope...worry” statement • Allow silence, explore emotion

4. Explore key topics • Goals • Fears and worries • Sources of strength • Critical abilities • Tradeoffs • Family

5. Close the conversation • Summarize • Make a recommendation

• Check in with patient • Affirm commitment

6. Document your conversation

7. Communicate with key clinicians

• Focus of care is on you and your family and your needs • Your responses may change with time, but the key is to keep the dialogue open and focused on your needs

2. What questions could I ask my doctor? • What caused this illness? • What should I expect to happen to me physically over the course of the illness? • Will I be in pain? • Will I become addicted to the pain medication? • What does dying look like? • Who will look after me when I can’t do it myself? • What are the risks of the treatment that I will be receiving? • Is my illness terminal? • How long do I have? Doctors may not have precise answers to this question and a general idea may be all that is possible. • How can I manage the quality of my life and set my treatment goals? 3. What resources are available to help me talk to my doctor? Virtual Hospice web site is an extensive web site with information and support on palliative and end-of-life care, loss and grief. www.virtualhospice.ca . Follow the “Support” link to: • Ask a professional • Asked and Answered • Discussion • Symptoms & Health Concerns 4. Other Disease Factors Your present illness may be complicated by your previous state of health. These factors are called, in medical language, “co-morbidities” and may include conditions such as diabetes, and chronic diseases of the lungs, heart, kidneys, or nervous system. You may also experience side effects from your drug therapy, including nausea and vomiting, fatigue, loss of appetite, or allergic reactions. ❦ WHAT NOW? • Conversation with your doctor, including your family members and caregivers, to gain an understanding of new symptoms and provide symptom relief. You may also want to ask what to expect, physically, going forward. • Ongoing conversation with your doctor and nurses, to understand how you may react to options for treatments, and who to contact, if previously unexpected problems arise • Discussion about the risks and benefits of therapies according to your goals of treatment

Here is something to keep in mind, expressed so well by a doctor whose practice includes palliative patients and their families:

“I believe that the most important endeavour we can undertake as a profession is to become experts at difficult conversations. If we were better at talking with people at the most troubling time of their lives, the effect on patients, their loved ones, and on health professionals would be both beneficial and far-ranging”.

Jennifer Brokaw MD

www.palliativecarebowvalley.com

❦ WHAT RESOURCES ARE AVAILABLE TO UNDERSTAND MY DISEASE MANAGEMENT? 1. Alberta Health Services (AHS): Advance Care Planning (ACP) is a way to help you think about, talk about and document your wishes for health care in the event that you become incapable of consenting to or refusing treatment or other care. • Advance Care planning to be discussed with family and members of your healthcare team. • Three general approaches to Goals of Care are: • Medical Care • Resuscitative Care • Comfort Care • Your goals of care are recorded on AHS forms and kept in a Green Sleeve (see image below) you keep and take to your healthcare providers. Every time you see a new doctor, take your Green Sleeve with you. For more information go to: • My Health Alberta - Green Sleeve video • Advance Care Planning • conversationsmatter@albertahealthservices.ca

The most common refrain is, “I’ll get to it, eventually”. An end-of-life conversation is an ongoing dialogue with your loved ones about values, goals, and beliefs. Get to know your family better today. Share your vision of what living well means to you. Ask loved ones what gives their lives meaning, or what they couldn’t imagine living without.

2. Rural Palliative Care Consultation Team (Alberta Health Services Calgary Zone) • Doctor and Nurse Specialists in hospice palliative care • When challenges arise for you, such as worsening of your physical condition, or emotional or psychological issues, this team can help • Please ask your doctor, or nurse, if you’d like a referral to this team • After Hours: 8 PM to 8 AM. Rural Home Care Nurse: 1-855-955-6665. Ask for the after-hours palliative care nurse. That nurse will offer phone advice, access the palliative doctor, if needed, or initiate help from EMS. That nurse will also notify our local Home Care team, who will follow-up with you the next day.

Brochure

3. The Conversation Project: How to talk to your doctor about your end-of-life care to ensure your wishes for end-of-life care are known and understood by your caregivers. • Speak Up Website: www.advancecareplanning.ca/making-your-plan • Conversation Project: www.theconversationproject.org

4. Alberta Health Services: Emergency Medical Services (EMS) Palliative and End of Life Care: Assess, Treat and Refer (ATR) Program. This program is not yet available in the Bow Valley, but we hope it will be, soon. In the meantime, you must go through your local Home Care nurse, or Home Care Response Team, palliative nurse (see Item 2. above, 4 th bullet) For your information, it provides urgent care to people who receive palliative and end-of-life care in their homes. EMS practitioners and your doctor, or nurse, will work together to ensure that the emergency treatment match- es your overall care plan. • For EMS assess, treat, refer: www.albertahealthservices.ca/info/Page14899.aspx • ems.palliative@albertahealthservices.ca

5. Palliative Care Disease Management Resources in the Bow Valley BOW VALLEY

403-678-7200 Ask for the case manager.

Home Care (A.K.A. Community Care)

GPs, RNs, LPNs Main Office

Home Care is provided by nurses 8 A.M. to 8 P.M. After hours call 1-855-955-6665 and ask for the after-hours palliative care nurse.

BANFF

403-762-2222 24 hour-a-day nursing care. Emergency Room services. www.alpinemedical.ca 403-762-3155

Mineral Springs Hospital

GPs, RNs, LPNs 305 Lynx Street

201A 211 Bear Street Suite 302 220 Bear Street

Banff Alpine Medical Centre GPs

www.mtndocs.ca 403-762-4846

Bear Street Family Physicians GPs

CANMORE

403-678-5536 24 hour-a-day nursing care. Emergency Room services.

Canmore Hospital

GPs, RNs, LPNs 1100 Hospital Place

1100 Hospital Place 403-679-7313

Bow Valley Cancer Centre

GPs & RNs

Ask for nurse navigator. Open Monday to Friday, 8 AM to 4 PM. www.bowrivermedicalclinic.com 403-609-2136 www.facebook.com/canmoremedical 403-678-5585

202-1205 Bow Valley Trail 124 - 1151 Sidney Street

Bow River Medical Clinic

GPs

Canmore Associate Medical Clinic

GPs

www.ridgeviewclinic.ca 403-609-8333

212-1240 Railway Ave

Ridgeview Medical Centre

GPs

Offers after-hours care, Monday to Thursday (5 PM to 9 PM), and Saturdays (10 AM to 4 PM) and Sundays (10 AM to 2 PM)

Three Sisters Family Medicine Clinic

www.threesistersmed.com 403-609-9095

GPs

106-75 Dyrgas Gate

LAKE LOUISE

200 Hector Road www.llmc.ca 403-522-2184

Lake Louise Medical Clinic

GPs

www.palliativecarebowvalley.com

6. Medical Assistance in Dying (MAiD) Your first discussion about MAiD should be with your doctor, or nurse. We know that end-of-life care and med- ical assistance in dying are important, sensitive and emotional issues for most people. If you are looking for

more information on all end-of-life options please visit: • www.albertahealthservices.ca/info/page13497.aspx

If you are interested in pursuing the process of MAiD, please refer to the graphic for responding to a patient request for Medical Assistance in Dying. • www.AHS.ca/MAID • www.albertahealthservices.ca/assets/info/hp/maid/if-hp-maid-placemat.pdf

Follow links Health Professionals and Volunteers Information, and click on: • Alberta Health Services Policy • Responding to a Patient Request for Medical Assistance in Dying: Placemat. • Patient and Families Medical Assistance in Dying Process Map

Write your questions, or notes, here. (You might want to list your doctors, nurses, and current medications and diagnostic tests here.)

PHYSICAL CARE AND SUPPORT

www.palliativecarebowvalley.com

PHYSICAL CARE AND SUPPORT

❦ WHAT ARE SOME PHYSICAL CHANGES THAT I MAY EXPERIENCE? When you have received the diagnosis of a terminal illness, your life may dramatically change. Ask your doctor to explain the symptoms you are experiencing. The following is a list of possible symptoms: • Increasing level of pain • Nausea and weight loss • Changes in level of consciousness and cognition • Fatigue • Problems with balance and mobility • Sensory changes: sight, hearing, smell, touch, taste • Physiological: breathing, circulation • Sexual dysfunction You may also reach a point where you may need to have further assistance from a trusted caregiver: friend, fam- ily member or home care nurse. More information can be found in Social Services and Support . ❦ WHO ARE THE MOST IMPORTANT PEOPLE I NEED TO TALK TO ABOUT MY PHYSICAL CARE AT THIS STAGE? • Your doctor: See list of doctor’s offices in Disease Management , page 13 • Home Care: See list in this section, page 19 • Family member • Trusted close friend • Other

❦ WHAT IMPORTANT INFORMATION SHOULD I EXPLORE? 1. Home Care

Home care offers personal healthcare services for people of all ages. It helps support you in continuing to live in your home and community. Depending on your needs, your care team may include a nurse, doctor, social worker, occupational therapist, physiotherapist or respiratory therapist.

Direct line: 403-678-7200 or 403-943-1920

2. Sorting our Health Concerns • www.virtualhospice.ca follow the links under Support.

• www.myhealth.alberta.ca This is an excellent site with current information directed to Albertans across all aspects of health care. Enter key words in the search box at top right of screen and you will be directed to relevant pages.

www.palliativecarebowvalley.com

3. Caregivers Guide: A Handbook about End-of-Life Care The caregiver role is integral to end-of-life care. Taking on this role needs careful consideration with expecta- tions clearly outlined. The handbook below is an excellent resource for people in this role. Hard copies of the Guide eventually will be available at the PCSBV office.

4. What to Expect When You Are Dying This document lists what changes you may experience as you approach the last few days or weeks of your life. www.covenantcare.ca/wp-content/uploads/2019/03/20150827-duclina-hospice-what-to-expect- when-a-person-is-dying.pdf

5. Are you at Risk of Falling? As your disease progresses you may experience weakness and balance issues. See this link for Finding Balance: www.findingbalancealberta.ca Or, call Health Link at 811 (24 hours a day, 7 days a week)

6. Fatigue Most people with cancer, and other terminal illnesses, experience cancer- or disease-related fatigue, but each person’s experience is different. Knowing how to manage cancer related fatigue can improve your physical well-being and quality of life. • See here for how to manage cancer-related fatigue: www.myhealth.alberta.ca/Alberta/Pages/cancer-fatigue.aspx • See Dr. Mike Evans video here for cancer-related fatigue:

www.youtube.com/watch?v=YTFPMYGe86s • See Dr. Mike Evans video “23 and ½ Hours”: www.youtube.com/watch?v=aUaInS6HIGo

❦ PALLIATIVE CARE RESOURCES FOR PHYSICAL CARE IN THE BOW VALLEY

RESOURCE

PROFESSION CONTACT INFORMATION

OTHER

When you call the doctor’s office, ask for a doctor trained in palliative care. Several local doctors have this expertise. A list of doctor’s offices in the Bow Valley is shown in Disease management , page 13 Call: 403-678-7200 Also available are home care aides, occupational thera- pists, respiratory therapists, social workers, dietitians and pharmacists.

Doctors’ Offices

GPs

Home Care (Banff and Canmore)

RNs, LPNs

Ask for case manager

1100 Hospital Place Canmore, AB T1W 1N2 403-678-7200 Main Desk

Bow Valley Community Cancer Care

Ask for Cancer Care Navigator

GPs & RNs

Palliative spe- cialist doctors and nurses

Rural Palliative Care Consultation Team

Available only by referral through your nurse or doctor

Check the yellow pages, or the Internet for a list of local pharmacies in Banff and Canmore

One-to-one medication counselling

Local Pharmacies

Pharmacists

Canmore

Medic Comforts #1 1302 Bow Valley Trail Canmore, AB T1W 1N6 403-678-3002 Gourlay’s Banff Pharmacy 220 Bear Street Banff, AB T1L 1B1 403-762-2516

Medical Equipment and Supplies

Banff

Home Care RN refers you to the Provincial Program

780-644-9992 (Edmonton) 1-877-644-9992 (Toll-free) www.alberta.ca/alberta-aids-to-daily-living. aspx

Covers 75% cost of catheters, incontinence pads, bath equipment, wheelchairs etc.

Alberta Aids to Daily Living (AADL)

1-800-661-6995 www.bluecross.ca 780-427-1432 Palliative Drug Benefits

Home Care RN refers you to Provincial Programs

Covers most costs of prescriptions for those receiving palliative care. Also covers ambulance.

Seniors Blue Cross & Palliative Drug Benefits (Two separate programs)

www.ab.bluecross.ca/dbl/publications.php www.alberta.ca/palliative-care-health-ben- efits.aspx 1100 Hospital Place Canmore AB T1W 1N2 403-678-5536 www.albertahealthservices.ca/findhealth/ facility.aspx?id=1000951 305 Lynx Street Banff AB T1L 1H7 403-762-2222 www.covenanthealth.ca/hospitals- care-centres/banff-mineral-springs-hospital

GPs, RNs, LPNs, full complement of professional support staff GPs, RNs, LPNs, full complement of professional support staff

Canmore General Hospital

2 dedicated palliative care beds

Mineral Springs Hospital

www.palliativecarebowvalley.com

❦ WHAT OTHER RESOURCES MAY HELP? • Sexual Health

OASIS stands for Oncology and Sexuality, Intimacy and Survivorship program. This program helps support people with cancer to adjust to sexual changes. It offers clinical services and education for people who have cancer and for healthcare providers. www.myhealth.alberta.ca/HealthTopics/cancer-and-sexuality

• Dealing with Hair Loss Chemotherapy and radiation therapy attack cells in your body that grow rapidly, such as cancer cells. Hair cells are normal cells that also grow quickly and are also affected by the treatment. www.myhealth.alberta.ca/health/pages/conditions.aspx?hwid=aa151672&#aa151675 The Canadian Cancer Society provides “Wig Rooms” where you can find new and used wigs and other acces- sories to use while dealing with cancer. To find a wig, call 1-888-939-3333 or visit: www.cancer.ca/en/support-and-services/support-services/ hair-donations/?region=ab • Mouth and Dental Care Good mouth care is very important after cancer treatment. www.albertahealthservices.ca/assets/info/cca/if-cca-mouth-and-dental-care-for-cancer-patients. pdf

Write your questions, or notes, here. (You might want to list your doctors, nurses, and current medications and diagnostic tests here.)

SOCIAL SERVICES AND SUPPORT

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SOCIAL SERVICES AND SUPPORT

A social response to support those suffering from a terminal disease is essential to the well-being of a com- munity. It involves cultural values, beliefs and practices. It also focuses on relationships and roles with family, friends and community. Without social support, communities and individuals suffer duress, often in isolation. Providing a safe and comforting environment is the aim of social support. Please see Spiritual Care and Support , page 30, for community pastoral support; and, Community Services and Support , page 47, for a list of many helpful community and social resources. In this Section we present education resources and community programs to help you navigate through the challenges placed on your relationships. The following practical information includes advice for: • Communicating at the end of life • Coping with a terminal illness and promoting emotional health • Becoming a caregiver For additional social support, refer to the Introduction, Meet Your Team , on page 4. They can provide extra in-person support and refer you to additional supports you may need. ❦ COMMUNICATION AT THE END OF LIFE We often hear patients and families say “How do I tell my children?”, “What do I say when I visit?”, “What if I say the wrong thing?”. It is often difficult to know what to say. The following resources offer ideas to make conversations between you, your family and your community a bit easier. The Canadian Virtual Hospice web site is an excellent source of communication information. You will find: • Advice for talking with children • Advice for visiting

• Knowing what to say • Sending condolences • Talking with health care professionals Please refer to the links below.

www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Communication.aspx www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/Asked+and+Answered.aspx

❦ WHAT DO I SAY TO MY CHILDREN OR GRANDCHILDREN? Talking to children about death can be one of the most difficult tasks we do as adults. Many of us need some advice on how best to talk to our children (see also the “Book and Music List” at the back of this guide, for many

excellent books about death, specifically for children). Please refer to the link, Virtual Hospice, which includes: • Suggestions on starting the conversation • Using open and honest communication • Using simple and clear language • Discerning when professional help is needed www.virtualhospice.ca

www.palliativecarebowvalley.com

❦ WHO CAN I TALK TO ABOUT CONVERSATIONS WITH MY FAMILY ABOUT HOSPICE PALLIATIVE CARE? Your doctor may refer you to the Alberta Health Services, Rural Palliative Care Consultation Team. A nurse practitioner, or specialized palliative care doctor will meet with you and your family wherever you are receiving care: your home, hospital, or assisted living facility. They can help you navigate through difficult conversations.

For some additional advice on how to talk to your health care provider, go to this link: www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Communication/ Tips+for+Talking+with+Your+Health+Care+Providers.aspx

Online Option: You can also connect with an online Palliative professional through the Canadian Virtual Hospice. This team is made up of doctors, clinical nurse specialists, a social worker, a pharmacist and a spiritual care advisor who specialize in the care of individuals and families living with terminal illness, or loss. To “Ask a Professional” on the Canadian Virtual Hospice site, go to this link: www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/Ask+a+Professional.aspx ❦ WHAT RESOURCES ARE AVAILABLE TO HELP ME AND MY FAMILY TO COPE? Many families who have cared for a family member have told us it can be overwhelming and exhausting, and, at the same time, satisfying and life-enriching. To learn more about coping strategies, read the topics related to emotional health in the following link: www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Emotional+Health.aspx

❦ WHAT OTHER COMMUNITY PROGRAMS AND SERVICES ARE AVAILABLE? Please go to Community Services and Support , page 47, for a list of available programs and services.

❦ WHAT RESOURCES ARE AVAILABLE TO SUPPORT MY SPOUSE AND ADULT CHILDREN, WHO ARE MY PRIMARY CAREGIVERS? Becoming a primary caregiver may not be naturally comfortable, or realistic, for you, or other family members. If you are unsure about whether, or not, you want to provide personal care in your home, we encourage you to discuss this with your Home Care nurse, or family doctor. If you are interested in becoming, or continuing to be, a caregiver, we suggest you, again, visit the Canadian Virtual Hospice web site, under “Providing Care”. Topics include: • Understanding death and dying • Sleep and caregivers • Caring for grieving children and youth • Caring for yourself • Providing Care • Help with medication, eating, bathing, toileting • Care of the mouth • Caring for face and hair • Preventing pressure sores Please refer to this link: www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Providing+Care.aspx

❦ WHAT OTHER RESOURCES ARE AVAILABLE FOR CAREGIVERS? The Champlain Hospice and Palliative Care Program, in Ottawa, offers excellent practical strategies for support and self-care for caregivers. www.champlainpalliative.ca/for-caregivers-patients/support-for-caregivers/

And, for The Order of St. Lazarus caregiver training, call: 800-665-7114, or email: Maureen.Gray@stjohn.ab.ca

www.palliativecarebowvalley.com

Write your questions, or notes, here.

SPIRITUAL CARE AND SUPPORT

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SPIRITUAL CARE AND SUPPORT

❦ WHAT DOES SPIRITUALITY MEAN? When everything is considered, it is the relationships we have with self, others, the natural world, the future, the past, and the ultimate reality, or God, that give rise to spirituality. Research has shown that people with terminal illnesses: • Consider their quality of life improved when their spiritual needs have been met • Value and frequently use spiritual beliefs and practices as a way to help cope with their situation • Often want to talk about spiritual issues Spirituality involves trying to find meaning and purpose in what is happening to us. It is fundamental to each person’s journey through life, a journey that yields a sense of who we are. A question you may ask yourself: Do I have a faith I can depend on? Spiritual suffering, often called total suffering, goes beyond physical pain and may include emotional and psy- chological suffering. It may involve intense grief and deep sadness. There may be a loss of dreams, future and living life without loved ones. The illustration below shows transformation, or movement, across the spectrum of spiritual well-being.

Spectrum of Spiritual Pain and Spiritual Well-being

Total Spiritual Pain

Spiritual Struggles

Total Spiritual Well-being

Emotional withdrawal Meaninglessness

Isolation or Abandonment Anger and Rage Guilt

Connectedness Meaning

Sadness Suffering

Hope and Trust Life after Death

❦ WHAT WILL I FIND IN THIS SECTION? In this Section you will find resources relating to spiritual care, which usually involves support in difficult situ- ations, such as loss, and matters of life and death. Resources include people to talk to, taken from the local Bow Valley Community Church list, and reading material including books and pamphlets. Related material can be found in Social Services and Support , page 23, and End-of-Life Care , page 35, of this guide. Electronic links can be found under this Section in The Book of Links, page 65, especially the link to the Canadian Virtual Hospice.

www.palliativecarebowvalley.com

❦ WHAT ARE THE MOST IMPORTANT RESOURCES FOR ME TO KNOW ABOUT? 1. Spiritual Resources and Community Church List

DENOMINATION NAME

ON CALL

PHONE

LOCATION

Canmore 709 7 Street

Anglican

St. Michael’s

Rev. Howard Thornton

403-707-7140

St. George In The Pines

Banff 101 Beaver Street Banff 455 Cougar Street

Anglican

Rev. Howard Thornton

403-707-7140

Baptist Doctrine

Banff Park Church Rev. Greg Unruh

403-762-3225

Canmore 709 7 Street

Baptist

Mountain Baptist

Rev. Trevor Sato

403-678-2861

Our Lady of the Rockies

Canmore Under Construction

Catholic

Fr. Nathan Siray

403-675-5044

Banff 1B1, 305 Squirrel Street Banff 407 Cougar Street Canmore 1717 Bow Valley Trail

Catholic

St. Mary’s Parish Fr. Dan Stevenot

403-762-3450

Gospel

Full Gospel Church Pastor Kevin Driver

403-497-4703

Trinity Bible Church

Gospel

Pastor Shawn Franklin

403-678-5063

Jehovah’s Witness Kingdom Hall Shepherd of the Valley

Canmore 122 15 Street Canmore 1205 1 Avenue

Jehovah’s Witness

Ron Carbert

403-688-1304

Lutheran

Pastor Mark Lobitz

403-637-2650

Banff 298 Banff Avenue

Presbyterian

St. Paul’s

Rev. Clay Kuhn

403-609-0872

1. Pastor Lester Carney

403-678-0928

Seventh Day Adventist

Mountain Sanctuary

Canmore 1205 1 Avenue

2. Doctor Check San

403-560-6868

Ralph Connor Me- morial

Canmore 617 Main Street Banff 302 Buffalo Street Canmore 2-117 Bow Meadows Crescent

United

Rev. Greg Wooley

403-493-4923

403-762-2075 403-762-3588

United

Rundle United

Rev. Murray Speer

Cross Way Com- munity Church

Non-Denominational

Pastor Darrell Young

403-678-9801

2. Alberta Health Services (AHS) Palliative and Spiritual Care Volunteers Palliative volunteers in the Bow Valley are available through Volunteer Services located at the Canmore Hospital. They provide compassionate companionship in many different ways and may be found in the Canmore Hospi- tal, lodges, your homes or long-term care facilities. For more information, call: 403-678-7253. Covenant Health at the Banff Mineral Springs Hospital also provides volunteers who are committed to improv- ing the quality of the patient and family experience. For more information, call: 403-762-7222.

3. Mindfulness Meditation Since 2009, the Canmore and Area Health Care Foundation (CAHCF) has funded Mindfulness Programs every Spring and Fall. The programs introduce you to meditation and yoga, to help you manage everyday stressors and improve your overall health. Benefits may include improved sleep, decreased stress, enhanced ability to cope with pain, reduction in the use of medication, an improved immune system and less anxiety.

“This is by far one of the most popular programs offered at the Canmore Hospital.” The programs are open to anyone in the community, including healthcare staff. Contact: Deanna Thompson or Suzanne Lawrence Call: 403-678-7208. Email: mindfulnessmeditation2012@gmail.com www.canmorehealthfoundation.com/mindfulness-program

4. The Role of Natural Places in Rural Palliative Care Parks and nature are known to influence quality of life at all phases, including end of life and for those experi- encing grief. Parks and nature reveal life and death, and nature teaches people to grieve. Alberta Parks and Mt. Royal University are working together to promote access and enjoyment of parks and nature for people nearing end of life, and for grieving family members. Contact: Sonya Jakubec, Mt. Royal University Call: 403-440-5075

❦ ARE THERE OTHER RESOURCES I MAY WANT TO CONSIDER? 1. Alpine Voices Threshold Choir

“Kindness Made Audible”: This is the motto of the Threshold Choir. The voice is a true and gracious vehicle for compassion and comfort. The Threshold Choir honours the ancient tradition of singing “a capella” at the bedside of those who are sick or dying, or in need of nurturing song. Only 3-4 members sing at the bedside at any given time. Contact: Choir Director, Jan Tissandier Call: 403-678-2233

2. Death Café At a Death Café, people, often strangers, gather to eat cake, drink tea and discuss death.

Its objective is to increase awareness of death with a view to helping people make the most of their (finite) lives. A Death Cafe is a group-directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session. Contact: Genevieve Wright Call: 403-609-1230 www.facebook.com/deathcafecanmore 3. Healing Pathway Healing Pathway is a practice of gentle touch that supports the healing of body, mind, and spirit. Rooted in the ancient Christian tradition of laying on of hands, this service is offered free to anyone seeking the Spirit’s healing grace, at whatever stage of life or health. A session of Healing Pathway is a gift to one’s self – nurturing and restorative. Contact: Sue Nichols. P: 403-678-4536 or Vicky Connoy. P: 403-609-2428

www.palliativecarebowvalley.com

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