Talking About End of Life Care

Transcription

1 Information for Patients, Families, and Friends Talking About End of Life Care What is Culturally Appropriate Care? Tlicho Community Services Agency

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3 Thanks to community members who contributed to this booklet. Thanks to the Dene Nation for their support for this project. Thanks to Health Canada for providing funding. We developed this booklet with acknowledgement of the Inuvialuit Regional Corporation. The opinions in this booklet are the authors and do not necessarily reflect the official views of Health Canada. Published August 2010

4 Palliative Care Project Advisory Committee Ialeen Jones, Director, Health and Social Secretariat, Dene Nation Rachel Abel, Community Development Coordinator, Yellowknife HSSA Goldie Allen, Community Health Nurse, Sahtu HSSA Ruth Budgell, Manager, Continuing Care, Tlicho Community Services Agency Ann Firth Jones, Elder Advisor, Hay River Liza Gaudet, Referral Care Coordinator, Yellowknife HSSA Julie Lys, Director of Health Programs and Services, Fort Smith HSSA Connie McNab, Regional Home Care Coordinator, Dehcho HSSA Julia Naedzo, Regional Continuing Care Medical Social Worker, Tlicho Community Services Agency Lori Oake, Health Planner Home Care, Department of H&SS Sharon Sunrise, Community Health Services, Hay River HSSA Nora Wedzin, Manager of Continuing Care & Independent Living, Tlicho Community Services Agency Susan Ashton, Ashton Consulting, Project Lead Brittany Fitzmaurice, Something to Say Communications, Consultant

5 This booklet has information for people that need palliative care, also called end of life care. Please talk to a primary care provider if you need help to understand the information in this booklet. Each section of the booklet has some special notes for family and friends. Palliative care. Discussing your illness. Care options. Planning for the end of life. Resources for patients, family, and friends.

6 Palliative Care is End of Life Care Specialized care that aims to make a dying person as comfortable and pain free as possible. Includes medical care the medicines and other treatments you take for your illness. A way of caring that combines the best of modern and traditional medicines. Comfort care for the whole person their mind, body, and spirit. Caring that honours a person s beliefs, lifestyle, and customs.

7 Palliative care is working with primary care providers Primary care providers include doctors, nurses, home care workers, and social workers. Primary care providers are here to help you, your family, and friends. They: Guide and support you through the palliative care process. Answer questions and provide information about medicines or other things related to your health or care. Provide training about certain care procedures or equipment. Palliative Care

8 Discussing your illness It s normal to be afraid to ask questions or talk about your illness. But it s important to do that. Share information so you and your primary care providers can develop a care plan that works for you. Make informed decisions. Help make sure you are well cared for, and as comfortable and pain free as possible. Choose how to discuss your illness Talk to the primary care provider by yourself. Have your family, a friend, or caregiver with you when you talk to the primary care provider. Ask the primary care provider to speak with your family, friend, or caregiver and have them tell you the information they heard. Ask for a medical interpreter if needed. You may also ask specifically for a male or female interpreter.

9 Get the information you need from the primary care providers Ask about your illness, what to expect, how you might feel. Ask questions if you don t understand something. Ask what type of care you can get, what choices you have, what is available. Ask about what equipment you need and what is available. Get updates about your illness. If your health changes in any way, the primary care provider can discuss your options. Know that you have the right to refuse any treatment.

10 Give primary care providers the information they need Say what family members or friends you want with you when you discuss your illness and your care, and when you receive care. Identify any cultural traditions or beliefs that support your care. For example: traditional medicines, traditional foods, and elders support. Identify any religious beliefs that people need to know about. Say what is important to you about your treatment options. Tell your primary care provider if you choose to use traditional medicines and if you do, what they are. Say at any time during your care if you have trouble with the medicines you take or if they make you feel sick. Ask if you or your caregiver needs information or advice about any of the care being provided.

11 For Family and Friends Family and friends are an important part of palliative care. If the patient agrees, talk with the primary care providers so you understand what your loved one feels and needs. What is the illness? What should you expect? Be available to listen or visit, or just sit and stay close. Sometimes you don t need to talk. Go to appointments with your loved one. Make meals and offer to help find information. Honour the way your loved one feels, and their wishes about their illness. Your loved one wants things to be as normal as possible. Treat them kindly, not differently Discussing Your Illness

12 Care Options Discuss your care options with your family and your primary care provider. Be open about what you feel, and work together. Find the best care option for you, given the resources and supports available in your community, region, or the NWT. If your illness changes along the way the best care option may change too. Home Care Nursing care and services can be provided in your home by Home Care staff. The primary care team helps you and your family get any special equipment you need such as a commode, walker, bath aid, or wheelchair. The primary care team gives your family the training and information they need to help keep you comfortable. For example they may learn how to give your medicine or provide personal care such as bathing. Hospital You stay in hospital because you need the kind of care that a hospital provides. If or when you return home the primary care team works with hospital staff to help set things up for you and your family.

13 Long Term Care Facility You stay in a special place that has care available all the time. Your family can visit regularly. Your primary care provider helps you find the facility that best suits your needs, and helps arrange transportation if needed.

14 For Family and Friends Home Care Discuss leave options with your employer; discuss finances with your family. You may be able to take an extended leave without pay or get six weeks compassionate Employment Insurance (EI). Contact the local social worker or EI office for help. Ask primary care givers for support and information. For example: Who to call in an emergency? What is considered an emergency? How to provide food and liquids if your loved one doesn t want to eat or drink? Take care of yourself so you can properly take care of your loved one. Ask other family members or friends if you need help or a rest. Home caregiving can be physically, spiritually, mentally, and emotionally demanding. You can burn out very quickly. Your loved one may need 24 hour care.

15 For Family and Friends Hospital or Long Term Care Facility Visit your loved one regularly. Primary care providers do what they can to make sure you can visit any time. Bring traditional foods. Make sure your loved one has no diet restrictions. Talk to the primary care team about your loved one s comfort care needs and what traditional things to include in your loved one s care. For example clothing needs, or holding prayer services or seeing a spiritual leader. Tlicho, April 2008 Care Options

16 Planning for the End of Life It s difficult to talk about and plan for the end of your life. But it s a good idea to make some important decisions about your illness and final wishes while you can. And you can choose to involve your family or not when you decide these things. Your Last Will and Testament A will is a legal document that describes your final wishes things you want to happen after you pass away. For example: how to distribute your property and possessions, and where and how you want to be laid to rest. For help please talk to a community social services worker or lawyer. Enduring Power of Attorney This is a legal document that allows someone to make financial decisions for you when your illness prevents you from doing that yourself.

17 Personal Directive A personal directive is a legal document that describes how to handle your care when your illness prevents you from communicating this. Discuss the details of a personal directive with your primary care provider and a friend or family member. It s important that everyone clearly understands what your wishes are. Tlicho, April 2008 Planning for the End of Life

18 Resources for Family and Friends Compassionate Care Employment Insurance Benefits Call for more information or go to types/compassionate_care.shtml You may be eligible for six weeks of benefits. Two people can split up the benefits. Funeral planning or wills Contact the community social worker or funeral director in your area. Grieving It s normal to feel grief when your loved one passes on. And it s important to take time to grieve. How, when, and how long you grieve is different for everyone. A list of places to look for support: Canadian Mental Health Association Help Line 7:00 pm to 11:00 pm, every day

19 Other Resources Gameti Health Centre... phone: Behchoko Health Centre.. phone: Behchoko Home Care... phone: Wekweeti Health Centre phone: Whati Health Centre..... phone: Tlicho Healing Path Wellness Centre..... phone: All Communities Territorial Health Care Insurance toll free: Palliative Care Drug Coverage toll free: Social Assistance toll free: Stanton Territorial Health Authority Discharge Planner.... phone: Stanton Territorial Health Authority Medical Social Worker. phone: Department of Health and Social Services Resources