My End-of-Life Decisions

Hearing that your health might not get better, or could change over time leading to your death, can feel really scary and overwhelming. Consider some strategies that might help you feel more in control.

• Focus on little things, set small goals that help you feel better.
• Try to continue to do the things you like and ask others to help you with this.
• Lean on family, friends, and your care partners for compassion and understanding. Be open about your fears, hopes, and wishes.
• Create routines that help you feel in control of your day-to-day life.
• Consider talking to a counsellor to help you deal with your anger, fear, grief or any of the feelings and emotions you are experiencing.
• Look at the option of  joining an online support group of others facing a terminal illness to help you feel less alone.
• Revisit all the ideas in the section ‘My Feelings, Emotions & Mental Health’  like mindfulness, journaling, music, and many more.
• Talk to those you trust about your wishes for health care decisions, being an organ donor, and your end-of-life care.

If you are diagnosed with a life-limiting disease like some cancers or neuromuscular diseases – you, yourself can experience grief. You are grieving your hope for the future and your imagined life.  

Understand that grief isn’t a straight line—you can feel many things at once.

• Know that there’s no “right” way to grieve your future.
• Know that you don’t have to do this alone—support can come from friends, family, counselors, spiritual supports, care teams, volunteers , and others.
• Believe that the life you have ahead of you matters and your wishes and decisions need to be shared.
• Learn about the (7) stages or feelings of grief. They can occur in any order at any time. It is different for everyone.
  • Shock or Numbness
    Feeling frozen or disconnected. Give yourself time, stick to simple routines, and let others help with decisions.
  • Denial or Disbelief
    Pushing the diagnosis away or focusing only on my “normal” plans. Take in information slowly and ask for explanations more than once—it’s okay.
  • Anger or Frustration
    “Why me?” anger at your body, physicians or the people who are supporting you. Write or draw it out and talk about your feelings with someone you trust.
  • Sadness and Deep loss
    Heaviness saying good-bye to the future you imagined. Let yourself cry, journal about what you’re losing, and have your feelings witnessed, not fixed.
  • Fear or anxiety
    Worry about pain, dying, or being forgotten. Ask direct questions, focus on today, practice mindfulness or breathing techniques.
  • Guilt
    Feeling like a burden or worrying about loved ones who are caring for you. Remember your life still has value – let other in.
  • Acceptance (that can come and go)
    Finding peace at times along with all the other feelings of grief. Focus on comfort, connection, joy in small things, and living in ways that feel true to you.

Who

• Choose someone to speak for you if you can’t speak for yourself (your parent or guardian or a substitute decision-maker).
• Decide who you want with you at the end of your life and talk to them about it.
• Contact your cultural spiritual advisor if they can offer you comfort and support.

What

• Think about what helps you feel calm, like music, prayer, family, or traditions.
• Decide what medical care you want or don’t want, if choices are available.
• Talk with your physician about CPR, life-saving treatments, or comfort-only care.
• Write your wishes down or record them on your phone.

Where

• Choose where you would feel most comfortable such as at home, in hospital, or in hospice care.
• Share your ideas for a celebration of life, funeral, or memorial.
• Think about what you want done with your body after death.

How

• Share any cultural , spiritual, or religious traditions you want followed.
• Learn about MAID (Medical Assistance in Dying) if you are 19 years or older and talk to a physician if you have questions.
• Think about support for your loved ones like grief or support groups.
• Learn about organ donation and register if you choose to.
• Talk about how you want others to be told of your final days or death such as by phone, message, or social media.

Learn about an advance care plan in the resource kit. It is a written plan of all the topics above and your choices care in case you become unable to make decisions for yourself. It can include

• Your personal values and goals about quality of life, dignity, and comfort in case of serious illness or injury.
• Specific health care instructions about the types of medical treatments you want or do not want, such as life support, resuscitation, or organ donation.
• The appointment of a substitute decision-maker, and
• Your wishes for end-of-lifecare, including hospice care, palliative care, MAID, or other.

Check out these advance care planning tools especially created to help you.

• For Youth under 19 years of age
• For Adults 19-30 years of age
• For First Nations
• For 2SLGBTQAI+

• Think about who you trust to help you make big decisions about your health care, and end of life decisions – these could be family, friends, roommates, partners, or health professionals.
• Think about how you want each person to be involved – emotionally, legally, or practically.
• Reflect on those you trust and who are closest to you. Consider your care partnersand how they have been involved.
• Keep in mind that plans can change quickly and unexpectedly, so it’s always good to have a backup.

Visit the resource kit to learn about these roles and services.

• Health Advocate
• Temporary Substitute Decision-Maker
• Substitute Decision-Maker
• Representative Agreement
• Cultural Spiritual Advisor
• End of Life Doula
• Executor
• Lawyer
• Advance Care Plan
• Advance Directive
• Do Not Resuscitate or No CPR order
• Palliative Care Professional
• Hospice Care Professional