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.

© Palliative Care Society of the Bow Valley ALL RIGHTS RESERVED

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

01

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

DISEASE MANAGEMENT

09

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

PHYSICAL CARE AND SUPPORT

17

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

SOCIAL SERVICES AND SUPPORT

23

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

SPIRITUAL CARE AND SUPPORT

29

• 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

35

• 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

47

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

ADMINISTRATION OF DYING

53

• 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

61

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

THE BOOK OF LINKS

65

BOOK AND MUSIC LIST

73

INTERPROFESSIONAL EDUCATION AND LEARNING

77

CALGARY HOSPICES AND RESOURCES

81

INTRODUCTION

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INTRODUCTION

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.

❦ 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

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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.

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❦ 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)

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❦ 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

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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.

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