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 will progress and may also include how long a person can live. 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 starting your own Mywell health planner (binder) with your personal photo collage, stories about you, your updated Health Profile, your Care Partners list, information on treatment options, and your decision documents.
Understanding Your Grief & Loss
If you are diagnosed with a life-limiting disease like some cancers or neurological conditions – 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.
“I remember sitting quietly beside my husband in the physician’s office after what felt like a never-ending series of tests and appointments. We had both hoped that the tests would explain his symptoms and perhaps lead to something that could easily be treated. Instead, the doctor gently told us that he had Parkinson’s disease. As the conversation continued, I heard a word that stayed with me: prognosis. Hearing this word made the moment feel very heavy. I remember feeling overwhelmed and needing time just to absorb what we had been 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 ever present and, on some days, incapacitating. 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 providers can work together to adhere to your wishes.
Senior Toolbox
Using Your Phone or iPad
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 app to record your thoughts, questions and messages to others.
Sharing My End-of-Life Wishes
Helping with 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 my dad first began talking about his diagnosis and what the doctors were saying about the prognosis, I could see how overwhelming it was for him. He told me that just trying to understand the medical information was difficult enough, let alone finding the words to talk about the fear, sadness, and uncertainty that came with it. He said that thinking about end-of-life wishes is something many people avoid for as long as they can. But as we talked more, my dad shared something important he had learned. He said that having these conversations can actually bring a sense of clarity and even comfort. By sharing his thoughts and wishes with those who care about him, he felt reassured that we would understand how he wanted to be supported. He said that sometimes the best place to start is simply by telling someone you trust how you are feeling and taking the conversation one small 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.
Senior Toolbox
Using Your Phone or iPad
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, feelings and wishes.
Journaling app to write down your thoughts, feelings and wishes.
Who Supports My End-of-Life Decisions
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
“Thinking about end of life has led me to reflect the people in my life and the different roles they may play. Family members and close friends often step forward in different ways – some offering emotional support, others helping with decisions or practical care. it is important to think about who you want involved, when you want them involved, and how you want them to support you. So many family members and professionals have already been involved in my health journey. Talking to them and asking for their help in specific roles, gives me reassurance that they understand my wishes.”
Tip
Consider seeking guidance from your health care professionals, palliative care or hospice care specialists and cultural spiritual advisors. Planning can provide peace of mind and ensure your wishes are heard.
Senior Toolbox
Audio - Choosing an Executor
Using Your Phone or iPad
Contacts app for the list of people who have specific roles.
Notes app for your thoughts, questions, and decisions.
Cloud storage for access to your Health Care & Business Professionals and Care Partners list.
“Dad’s old chair by the front window held countless memories of relaxing talks with him. It was where he cradled his grand-babies for the first time, regaled us with stories from his past, and imparted his tried and true advice. He had identified who was his power of attorney (enduring), executor, health advocate(s), and cultural spiritual advisor(s). We knew his wishes for his funeral and burial. However, there were certain conversations we did not have – discussions about the end of his life, his clear preferences for where he wanted to be, final medical interventions, and who he wanted to be surrounded by. Recognizing the importance of these discussions, the Mywell Health activities were developed to facilitate such conversations and to offer a way to record or write down the wishes of our loved ones.”
My Advance Care Plan & Decision Documents
Learning about End-of-life Decision Documents
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 Will and Final Requests
Having a will and updating it regularly ensures your wishes are followed and may help prevent family conflicts. Learn about writing your will using BC guidelines and having it reviewed by 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
Take your time and review the tools with someone you trust. Ensure you have names people to represent you and your wishes – during your final days and after your death.
Senior Toolbox
Audio - After a Death Checklist
Using Your Phone or iPad
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.
“When I looked at this list on the Mywell Health website I was overwhelmed, to say the least. My children had been asking their dad and I to get our papers in order. I had no idea that there was so many ‘papers’ or documents to think about. We talked to our son-in-law and asked if we could just write all our choices in our will. He said no. The will is specifically about our estate and after death wishes. But as we read through the list and using the government and advance care planning websites, we both came to terms around our decisions about a DNR, organ donation, MAID and our temporary substitute-decision maker list. We wrote it into the Advance Care Plan template. I feel a sense of relief and comfort. Next weekend we are going to share it with the kids.”
