Understanding My Prognosis
Learning about Your Prognosis
A physician or specialist makes a prognosis by looking at your diagnosis, test results, symptoms, and overall health. They also use their medical knowledge, research, and experience with similar patients to estimate what might happen and how treatment may or may not help. A prognosis is how a an estimation of how a disease or health condition may progress. Because everyone is different, your prognosis may also be different from others.
- Learn as much as you can about your health condition and prognosis.
- Ask your physician and specialist questions to help you understand your prognosis and treatment options.
- Record your understanding of your prognosis in your in your updated Health Profile.
- Use research-based websites to learn about your condition and options. Use your critical thinking skills as you learn.
- Ask for help from your health advocate to come with you to all appointments and to record all the information given to you.
- Have your health advocate(s) research current treatments, clinical trials, or alternative therapies, if you want.
- Keep notes about your health, treatments, and appointments in your phone or journal.
- Consider creating your own health binder with your personal photo collage, stories about you, your health profile, your care partners list, information on treatment options, and your decision documents.
Understanding Your Grief over the Loss of Your Future
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.
“When I sat quietly in the physician’s office, I heard a word that would stay with me: prognosis. ‘A prognosis is a physician’s best estimate of how my condition might change over time, and how treatment may or may not help. It isn’t a guarantee — and it can be different for everyone.’ Hearing that my prognosis meant a terminal, life-limiting illness was overwhelming. I needed space and time to absorb what I was being told. Health care professionals reminded me that I have the right to ask questions — questions about treatment options, comfort care, and what I can expect. Nevertheless, I was overcome with so many emotions about my diagnosis, prognosis, and facing the reality that my planned life was going to change. The loss and grief were heavy and, on some days, overwhelming. But, surrounding myself with people I cared about helped me feel less alone. Taking time with the people I love reminded me that this next chapter is still part of my life.”
Tip
Prior to and at the end of your life can be the most difficult time to have your voice heard. By preparing and writing things down, family, friends and health care professionals should work together to adhere to your wishes.
Adult Toolbox
Using Your Phone
Notes app for your thoughts, questions and answered gathered.
Alerts/Reminders app to do something nice for yourself each day.
Contacts app for the list of people you to connect and or be with.
Voice Memo to record your thoughts, questions and messages to others.
Sharing My End of Life Wishes
Creating the Space to Have the Conversation
Talking about the end of your life can feel hard, but it can also help you feel calmer and more in control. Try to have these talks early, when you feel able to speak for yourself. There is no “right” way to do this—what matters most is that your wishes are heard.
- Choose a safe space to talk with people you trust, like family, close friends, and your health advocate.
- Ask permission of who is present, if someone can record the conversation with a voice memo or in written note.
- Consider re-visiting the recorded or written conversation for yourself and with others who were not present.
- Share what matters to you, such as your values, beliefs, and cultural expectations.
- Express your worries about dying or what happens after.
- Talk about privacy and boundaries, including who can be with you and what information can be shared.
- Plan a visit with your physician or nurse practitioner, or a palliative care team member, to answer your questions and help you understand your options.
- Remember that your voice matters, and your questions, concerns, and choices should be respected.
Recording Your End-of-Life Wishes
The following list of questions/tasks are offered to assist you in your planning. Consider recording or writing down your thoughts and any conversations, for yourself and to share with others.
What
- What may make you comfortable (music, prayer, family, friends, traditions) in your final days?
- If choices are available, what medical interventions do you want or not want?
- Have you discussed a Do Not Resuscitate or No CPR order or Medical Orders for Scope of Treatment (MOST) with your physician or nurse practitioner?
- Are your wishes and preferences written in an advance care plan?
Where
- Where do you want to be at the end stage of your life (at home, in hospital, in palliative care or hospice care, or somewhere else)?
- Where do you want your celebration of life, funeral, or memorial to take place?
- Where do you want your remains to be laid?
How
- Have you discussed any cultural, spiritual, or religious traditions you want at the end of your life?
- Do you know about Medical Assistance in Dying (MAID)?
- If you choose MAID, are you interested in learning about bereavement support or support groups for loved ones?
- How do you want to be remembered? What are your wishes for your celebration of life, funeral, or memorial?
- Have you considered and/or are you registered to be an organ donor?
- Have you discussed how you would like your passing to be communicated to others (by phone, in print, and/or by social media)?
“When you first hear a serious diagnosis and begin to understand the prognosis, it can feel overwhelming. It is hard enough to process the information yourself, let alone, talk to others about the fear, sadness, and uncertainty that come with it. I would think that, talking about your end-of-life wishes is something many people avoid. Maybe because they do not know where to begin or because the conversation feels too heavy. Yet I have learned that talking about these things can bring a sense of clarity and even comfort. For me, it allowed those who care about me to understand my wishes and support me in the way you want. You do not have to have all the answers at once. For me it is a day to day, week to week, process. Sometimes the best place to start is simply by sharing how you feel with someone you trust and taking the conversation one step at a time.”
Tip
Find a safe and comfortable space to discuss your end-of-life wishes with those you trust before you are very ill and unable to communicate or make clear decisions.
Adult Toolbox
Using Your Phone
Notes app for your thoughts, questions, and answers gathered.
Contacts app for the list of people you want to connect or be with.
Voice Memo app to record your thoughts, questions and conversations with others.
Journaling app to write down all your thoughts, feelings and wishes.
Who Supports My End-of-Life Decisions
Choosing an Executor
Choosing Who Supports Your End-of-Life Decisions
- Think about who you want involved to help you make decisions about your health care and your end of life. Consider family, friends, partners, adult children, health professionals, or others.
- Reflect on those you trust and who are closest to you. Consider your care partners and how they have been involved.
- 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 partners and how they have been involved.
- Confirm the people you have chosen to support your health and end-of-life decisions (both professionally and personally) and share their roles with others.
- Consider who you want making decisions on your behalf, if you are unable to do so. Have you updated your temporary substitute decision-maker list? Or have you prepared a representation agreement that names your substitute decision-maker?
- Have a discussion about having visitors and who you want at your bedside in your final days?
- Reflect on your personal values and beliefs. Plan ahead for what kind of support you want from cultural or spiritual advisors.
- Keep in mind, though, that unforeseen factors may impact even the best-laid plans.
- Update your list of Health Care and Business Professionals and care partners.
- Add any new roles that are important to you with the person’s name, contact info, and any special instructions.
- Visit the resource kit to learn about these roles and services.
Temporary Substitute Decision-Maker
Lawyer
Palliative Care Professional
Hospice Care Professional
“Think about who you want to be involved at the end of your life and when, and how you want them involved. Reflect on those you trust and who are closest to you. Consider your care partners and how they have been involved. Confirm the people you have chosen to support your health and end-of-life decisions (both professional and personal). Keep in mind, though, that unforeseen factors may impact even the best-laid plans.”
Tip
Consider seeking guidance from your health care professionals, palliative care or hospice care specialists and cultural spiritual advisor. Planning can provide peace of mind and ensure your wishes are heard.
Adult Toolbox
Using Your Phone
Notes app for your thoughts, questions, and decisions.
Contacts app for the list of people who have specific roles.
Cloud storage for access to your Health Care & Business Professionals and Care Partners list.
My Advance Care Plan & Decision Documents
Understanding End-of-Life Decision Documents
Planning for the end of your life can be difficult. It is important to know that many health, government, and non-profit groups have created booklets and tools to guide you in discussing and making end-of-life decisions. Here is a list of some decision documents you might want to consider.
Do Not Resuscitate or No CPR order
Medical Orders for Scope of Treatment (MOST)
Medical Assistance in Dying (MAID) Request
Organ Donor Registration
Power of Attorney (Enduring)
Writing an Advance Care Plan (ACP)
Consider learning about an advance care plan, which outlines your choices for medical treatment and care in case you become unable to make decisions for yourself. The plan outline and questions are there to assist you with identifying, discussing, and recording the following topics:
- 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.
- Your wishes for end-of-life care, including hospice care, palliative care, MAID, or other.
Writing Your WiIl & Final Requests
Depending on your age, you may or may not have a will. If you do not have a will in BC, your estate is distributed by the courts to your spouse, children, and other family members in a legally set order. The court can also appoint an administrator to handle your estate, which may take longer and not reflect your personal wishes. When writing your will with a lawyer or notary:
- Choose an executor who can carry out your wishes.
- Consider their skills, personality, and the time commitment involved. Learn about executor compensation. Understand the roles of an executor and power of attorney, even if it is the same person.
- Consult professionals to ensure your will is valid, complete, and up to date.
- To assist with content in your will, review the ‘After a Death’ checklist to include guidelines for those following your wishes after your death.
- To learn more about wills, visit the resource kit for resources and templates.
List of items to consider.
- Who has been involved in your will discussions?
- Is your will current, signed, and dated?
- Have you chosen an executor and notified others with their roles?
- Have you documented your end-of-life wishes?
- Have you outlined how to distribute your belongings?
- Have you listed the care of dependents or pets?
- How do you want family heirlooms, photos, and history handled?
- Have you set aside funds for your celebration of life or burial?
- Have you shared your financial situation with your executor or power of attorney?
- Do you have specific wishes for your celebration of life or burial, including cremation or burial, and a plot?
- Have you considered leaving letters, videos, or a memory book as a legacy?
- Have you planned your celebration of life details, such as location, music, and budget?
- How should the news of your passing be shared?
- Do you have thoughts for your obituary or memorial card?
“Planning for the end of your life can be difficult. It is important to know that many health, government, and non-profit groups have written booklets and tools to guide you in discussing and making end-of-life decisions.”
Tip
To assist your executor and others who are following your wishes after your death, review the ‘After a Death Checklist’ created by the government of BC with more details in the resource kit.
Adult Toolbox
Using Your Phone
Notes app for your thoughts, questions, and decisions.
Contacts app for the list of people who have specific roles.
Cloud storage for access to your Decision documents.
