Taking Charge After a Diagnosis
Receiving a terminal diagnosis is among life’s most challenging moments. The swirl of disbelief, fear, and grief can feel overwhelming. While deeply painful, this moment can also be a turning point toward clarity, autonomy, and peace.
It Is Not Either-Or
When dealing with a life-limiting illness, patients and their families can sometimes fall into the trap of believing they have to stay positive 100% of the time. They think that being realistic means giving up. Talking about and planning for the end of life feels like giving into the disease and hastening death. They walk a single, narrow path of being hopeful and ignoring reality.
This kind of positivity can be toxic. While it may feel good in the beginning, putting on a brave face and ignoring reality can set unrealistic expectations. Decisions don’t get made, important conversations are not had, and it sends the message that succumbing to the natural progression of the disease is somehow a failure.
Making Space for Hope and Grief
Hope doesn’t vanish in the face of terminal illness, it just changes shape. Hope transforms as the situation changes. Hope grounded in realism allows the dying person their measure of personal power. Maybe it’s no longer hope for a cure, but hope for time well spent, for meaningful connection, for comfort, or for a peaceful death. At the same time, grief will come in waves: grief for what has been lost, grief for what is uncertain, and grief for what is to come.
Give yourself permission to feel it all. And know that support is available through counsellors, spiritual guides, palliative care teams, and end-of-life doulas.
Understanding Your Diagnosis
Having a life-limiting illness doesn’t necessarily define how long you have, but it does mean that it is likely that the illness cannot be cured. That said, a terminal diagnosis does not mean you stop living. It means your time is more precious than ever. Understanding what is expected, what is possible, and what could change in your condition is the foundation for making informed decisions. Ask your medical team clear, honest questions:
“What is the usual course of this illness?”
“What symptoms should I prepare for?”
“What are the treatment goals now?”
Knowledge doesn’t steal hope. It gives hope a place to stand.
The Power of Conversations
One of the most loving things you can do for yourself and for those who care about you is to talk. Talk about your values, your fears, and what truly matters in the time you have. Early and ongoing conversations with family, friends, and care providers may even help people live longer. These aren’t one-time events; they’re evolving dialogues.
Ask yourself:
What brings me comfort?
What gives me meaning now?
What does quality of life mean for me?
Then, share your answers, and keep sharing as things change.
Choosing How You Want to Live and How You Want to Die
Planning for the end of life is not about giving up, it’s about reclaiming agency. The importance of Advance Care Planning (ACP) cannot be overstated, as well as discussing options for palliative care, home care, and symptom management. You can also work with an end-of-life doula to do legacy work, complete ACP paperwork and discuss your wishes for your deathbed (religious rites, sights, sounds, smells, people, etc.), after-death body care (e.g. family-led washing and shrouding), funeral plans and interment.
This is also the time to appoint a substitute decision-maker, someone who understands your wishes and will advocate for them if you cannot speak for yourself. You will need a Power of Attorney for financial and legal matters, a Medical Treatment Decision Maker to make medical decisions in line with your wishes, and an Executor who understands and is committed to honouring your wishes after death.
This planning ensures that your care will align with your beliefs, values, and preferences. If decisions are not made, your care may end up being the default treatment of the healthcare system or the best guess of your loved ones. Making your wishes known gives your medical team the confidence to make hard decisions relating to your care. Most importantly, it can relieve your family of the burden of guessing what you would have wanted and the fear of getting it wrong.
You Are Not Alone
It is impossible to deny the difficulty of this path. Difficulty is built into the process. Difficulty walks alongside you. But there is a compass when the road ahead is foggy. By grounding yourself in knowledge, expressing your wishes, and connecting with others, you make space for dignity, courage, and love to shape your remaining days.
You can’t choose your diagnosis, but you can choose how you meet it.