End of Life Care
Canadian Virtual Hospice has been sourced frequently in the preparation of this web page. We thank them for the excellent resource materials they have created.
The majority of Canadians are thinking about end of life care according to the Hospice Palliative Care Association. It is a time for questions about the choices we’ve made in living our lives so that decisions about end of life care can be made with understanding of personal preferences. The very best thing we can do is to identify our preferences and make then known while we’re not in the midst of dealing with a life-threatening illness. This advance planning gives us, our family members and care providers peace of mind when health issues do arise. Sometimes health concerns can be pressing and decisions about your end of life care or that of a loved one have to be made. No matter when the need arises, these are always very personal decisions that can be complex and sometimes difficult. Comfort can be gained for all involved when you know the options available to you and when you talk about what’s important to you with the people you care about and your health care providers.
An approach to health care decision making
Exploring all available information and options thoroughly before making decisions can reduce anxiety and confusion. With improved understanding, you may feel more confident that your decisions are the right ones for you and your family. Becoming informed about the care being considered, determining goals for what is best for you and understanding if your hoped-for goals are possible to achieve will help you plan accordingly.
Advanced Care Planning
“I want my loved ones to know my feelings about my future health care. That way, if they’re faced with making decisions on my behalf they’ll have peace of mind.”
CancerCare Manitoba, Community Oncology Program, It’s About Conversations – Understanding goals of care and advance care planning, your guide for making healthcare decisions
Advance care planning is when you think about, talk about and record your preferences for health care treatment in the event that you are not able to make decisions for yourself. A health care directive is a legal document you can complete by yourself, with someone else or legal counsel to express your wishes about the amount and type of health care and treatment you want to receive should you become unable to speak or otherwise communicate this yourself. It also allows you to give another person the power to make medical decisions for you should you ever be unable to make them yourself.
Your health care directive should identify your wishes regarding goals of care and treatment options. Talk with your health care provider about treatment options relevant to your specific health condition where your preferences can help direct care.
You can make changes to your health care directive at any time if you are of sound mind, even after you have given it to others. If you do make changes, you should share the updated copy with your substitute decision maker and health care providers.
CancerCare Manitoba has created a workbook to help walk people through understanding their preferences for goals of care. This workbook includes a health care directive form that you can print and fill out.
End of Life Planning Canada has an Advance Care Planning kit that has questions that may help you with identifying your preferences for care
Are you a substitute decision maker or a health care proxy?
Being identified as a substitute decision maker or proxy means that you are the person medical staff will seek out in the event that a decision regarding treatment is required. It is important that you are familiar with any recorded information and comfortable making decisions about goals of care designations and treatment options for the person you are representing. Speak with the person you are representing to understand their preferences and record these for future reference if that option is available to you.
Managing Symptoms of Treatment and Disease
It’s understandable that you won’t know what to expect when an illness strikes and may have questions about symptoms and health concerns. Your care provider will be able to identify symptoms associated with your condition as well as commonly used treatments. Keep the conversation about your symptoms and concerns ongoing with your care provider as these discussions will be instrumental in helping them meet your identified care needs.
To ensure that people experience the best possible quality of life up until the end of life, a focus of palliative care is on managing symptoms to ensure comfort. Palliative care extends to both patients and the people they identify as their family members who are part of the palliative journey. This type of care is a special focus of care that is provided by any medical professional. It strives to address not only physical needs but psychological, social, cultural, emotional and spiritual needs of each person and family during end of life care and for those who are bereaved.
Special Care for Caregivers
Providing end of life care can be both rewarding and difficult. It’s not unusual for care providers to feel mental, physician and emotional demands. Your health care provider and palliative care program staff are excellent resources as you work together to provide care and comfort. One of the best ways to allow you to maintain your role is to have supports in place so that you can take breaks. Physical and emotional exhaustion do take a toll on care providers. Don’t lose sight of self-care that is so important to keeping you strong through the palliative care journey.
Compassionate Care Benefits are Employment Insurance benefits paid to people who have to be away from work temporarily to provide care or support to a family member who is gravely ill and who has a significant risk of death within 26 weeks (6 months). A maximum of 26 weeks of compassionate care benefits may be paid to eligible people.
More information on Employment Insurance Compassionate Care Benefits
Canada Pension Plan (CPP) provides disability benefits to people who have made enough contributions to the CPP and who are disabled and cannot work at any job on a regular basis. Benefits may also be available to the dependent children. More information on CPP disability benefits.
Medical Assistance in Dying (MAID)
Interlake-Eastern RHA works in conjunction with the provincial Medical Assistance in Dying (MAID) team to deliver this service that is distinct from our regional palliative care program. For more information about MAID:
Goals of Care Designations
There are three general approaches to care called Goals of Care Designations:
In this approach to care, the aim of medical tests and interventions are for optimal symptom control and maintenance of function when cure or control of an underlying condition is no longer possible or desired. Transfer to a hospital may occur in order to better understand or control symptoms.
Medical tests and interventions are used to cure or manage an illness as well as possible but don’t use resuscitative or life support measures. This is appropriate when resuscitative and life support measures won’t work or when the person chooses not to receive such treatments. Medical care can be provided in many locations, depending on the person’s wishes and values as well as medical appropriateness.
The focus is to prolong or preserve life using any medical or surgical means including, if needed, resuscitation (trying to restart the heart after it has stopped) and admission to Intensive Care.