Caregivers and goals of care
Together for Better Understanding and Better Care
This content is intended for caregivers who provide significant or occasional support to a care receiver whose health, quality of life or independence is at risk of deterioration or has already declined. Regardless of the person’s age, living environment, the nature of their disabilities or your relationship with them —whether familial or not—you are considered a caregiver. 1
- Adapted from section 2 of Bill 56, the Act to recognize and support caregivers
Why is it important to talk about this?
In the event of a medical emergency involving the care receiver, would you be able to communicate their wishes regarding the care and treatment they would or wouldn’t want to receive?
Have you considered this kind of situation?
Do you feel well informed about their current health condition?
Have they shared their thoughts or even decisions with you about the care they would want?
What do care goals mean?
It is a set of care actions deemed to be the best and most appropriate and beneficial for the person you are helping, following a discussion with their attending physician or specialized nurse practitioner.
You may find yourself making links to other terms and you may have heard about levels of care, levels of medical intervention (LMIs), Advance Medical Directives (ADRs), Do Not Resuscitate (DNR) orders and Advanced Care Planning (OCP).
It is normal to feel a bit lost. To help you gain clarity, consult the available resources.
When to talk about it? And when to talk about it again?
- The person you care for has a serious or chronic illness that suggests a decline in their condition.
- Their health is changing, at risk, or requires long-term care.
- Their independence is decreasing, is changing significantly or is being altered during a change in living environment.
- Their life expectancy or quality of life is compromised by illness.
- It is always better to talk about it before an emergency occurs.
What is my role as a caregiver?
- Remember that the care goals must be regularly reassessed to ensure they reflect the person’s wishes.
- Request a copy of the completed care goals form and keep it in a safe place in your home or in the care receiver’s home, in an easily accessible location for the emergency teams.
- Acknowledge the value of being prepared and the benefits of talking about this early, even if it’s difficult or emotional. Doing so can ease the burden on you while respecting and protecting the person you care for.
If the care receiver is competent
- Express your availability and willingness to support them in reflecting on and choosing their care goals, in a way that respects their beliefs and values.
- Encourage and inform the care receiver about the importance of communicating their wishes, preferences and concerns about their care.
- Share your concerns and explain why the conversation matters to you. Provide facts and express how you feel.
- Invite the care receiver to complete the care goals questionnaire to help them in their thinking process and offer to help them complete it if they want.
- Encourage them to complete the Advance Medical Directives form to document their choices.
- If the they agree, introduce yourself to the physician and care team as their caregiver during appointments. This helps your role as a care and service partner. Your presence can ease communication and help the care receiver ask questions they may have.
- Share with the attending physician and health care team any information from past conversations you’ve had with the care receiver before they became unfit (their values, life goals, thoughts on life and death).
- Support and inform their legal representative about ongoing discussions and decisions, to help with the decision-making process.
- Make yourself available to help the health care team determine the most appropriate care goals.
- Ask the attending physician and health care team about:
- The benefits, risks and consequences of the proposed care;
- The possible health conditions or outcomes following treatment;
- The possibilities and limitations of medicine, based on the person’s condition.
Together, let’s support dialogue for enabling informed, shared and personalized decision-making
Remember, you are not alone. You can always share your questions and concerns with the attending physician and care team. Take care of yourself, seek support, and don’t hesitate to ask for help if needed. Be aware that the health care team can refer you via the online tool Référence aidance Québec to professionals who will listen to your needs and offer solutions adapted to your situation.
Need help?
For someone to talk to, information, and referrals, visit the L’Appui des proches aidants website or call 1-855-852-7784.
To speak with a psychosocial professional, call 811 option 2 or 819-966-6201. Feel free to identify yourself as a caregiver. This 24/7 service provides one-time support, advice and referrals to an appropriate resource in the health and social services system or to a community resource. For more information, please visit www.cissso/811.