“I made the hardest call I've ever had to make to my mother and told her I couldn’t go on with my radiation. I have never been so torn in my life. But, I'm happy that I trusted my instincts. I just wanted to live as normally as possible” -Thomas
Facing choices about whether to continue treatment, making decisions about advance care planning and arranging our own funeral are not the usual conversations we have as young people. Here we talk about how we come to make decisions, voice our choices and prepare others for a time when we may no longer be able to make decisions on our own. We also discuss what leaving a legacy means to us.
Advice from Health Care Providers
Contemplating the future and thinking about making tough decisions can be very difficult. The idiom “plan for the best and prepare for the rest” can be helpful when considering decisions about future care. You can hope that this current treatment will continue to work and, at the same time, think about what is most important to you if the treatment does not work or if the side effects are too many. There is no “right answer” in these situations, but they require an exploration of what is most important to you and a careful balancing of the risks and benefits of each treatment and intervention. These decisions are even more difficult in times of high stress, like when facing a crisis or acute change. Therefore, these conversations may best be started in times of relative stability, taking the time to contemplate the “what if’s” of the future. Additionally, these are not one-time decisions. They need to be revisited and contemplated again over time as things change. You might want to think about involving others in your decision making. You do not need to make decisions alone. After sharing with your team the things that are important to you, if it would be helpful you can ask your doctor and/or medical team for their opinion and recommendations. Consider sharing this information with your friends, partner, parents, or other supportive people in your life. That way they can understand the context for why you are making decisions and can provide support to you.
Decisions about stopping treatment
The decision to discontinue cancer-directed treatment is one of the most difficult decisions one can face. This decision needs to take into consideration your illness experience – what you have endured, what you have overcome, what is happening with your disease right now. Knowing everything that you have been through, it is important to consider what is most important to you. What are you hoping for? If a cure is no longer possible, what else are you hoping for? Continue asking this question until you have identified all the things that may be important to you right now. Are you hoping for comfort? For the chance to see next Christmas? An opportunity to travel? More time at home? If your current treatment or other possible treatment options cannot help you achieve these goals, it might be time to consider discontinuing treatment. Additionally, careful consideration of the burdens or risks of treatments should be weighed against the possible benefits or outcomes. If the balance tips too far toward the burdens or risks, this also might be an important consideration in deciding to change or to stop treatment. Including others in discussion around the possible benefits and burdens or future of continued treatments and reminding them of the ups and downs of your cancer care is essential. These kinds of discussions may shift the perception from “giving up” to “changing priorities.”
It can be hard to think about a time in the future when you might become too sick to be able to make decisions for yourself. It can be even harder to have conversations about your wishes with those closest to you. You might be ready to talk about these decisions but your partner, family and/or close friends may not be and inadvertently shut you down by saying something like “Don’t talk like that. Don’t give up hope.” On the other hand, others close to you might be wondering what your wishes are, but are afraid to bring it up in case you are not ready to talk. Planning ahead has nothing to do with hope. Planning ahead is a way of helping ensure your wishes are carried out, and helping those closest to you so that they are not left second guessing if there comes a time you cannot speak for yourself. These are not everyday conversations, especially when you are young. If you haven’t already, you will soon discover that many of the resources and the information that is available about making wills, funeral planning, powers of attorney and advance care plans (sometimes called “living wills”) tend to be geared to older people. This can add to your feeling out of step with your peers and feelings of isolation. You might find it helpful to watch a video or read about how others in your situation have tackled this. Every situation is different and depends on many factors including things like whether you own property, if you are single, partnered, legally married or have children. Different provinces and territories in Canada have different laws. Some people choose to have joint ownership on bank accounts and property (like houses and cars) with beneficiaries. Seek legal and financial advice from experts as needed. Consider: Advance care planning – Hopefully, you will always be able to speak for yourself and express your wishes for your medical care. But if you can’t, you and your loved ones will be glad you talked about and recorded this. There are many resources to help you start these conversations. One helpful resource is the national Speak Up Campaign that provides resources on advance care planning. Wills and powers of attorney – Because laws are not the same in every province or territory, it can be helpful to seek legal advice. Situations vary greatly depending on whether you are partnered, have children, own property and/or other assets. Funeral planning: This includes your wishes in regard to burial, cremation, religious ceremonies or services, celebration of life, obituaries, etc. Many have said that they found once they had done this type of planning, and had these hard conversations, they felt relieved and more settled. They could then put these things aside and get on with living.