How many times have we been told not to give up hope? After all, hope is the tool that inspires us to keep going through disappointments and setbacks, through fear and the unknown. Hope is a powerful force in our lives that often leads to great things. However, people frequently misuse hope’s role at the end of life, making it an obstacle to finding peace at the end of life.

Our death-fearing society often uses hope as a crutch to deny the reality of a terminal diagnosis.Despite medicine and science telling us that life is near the end, we remember the story of how Jesus raised Lazarus, and we cling to the very slight chance that we, too, will avoid death, however narrowly.

Doctors also feed this misplaced hope by describing promising clinical trials whose results are many years away, but still, we hope that maybe we can hold on just long enough for them to become available.

This hope in what could happen causes us to overlook what likely will happen, and when that time comes, it blinds us, leaves us ill-prepared, and terrifies us. This isn’t to say there is no room for hope at the end of life. Not in the least. But we must reevaluate this hope and direct it towards new goals.

Choose Your Own Adventure

Let’s do a “choose your own adventure” exercise.

Perhaps you hope to dance with your daughter at her wedding or see your child walk across the graduation platform with a diploma in hand. But maybe those events are still several years away, and you have been given one to two years to live. Where does hope fit into this?

Disillusioned Hope

If you hope, despite multiple experts telling you otherwise, to see these events, you then pursue treatment after treatment that has progressively worse side effects, causing you to miss out on the soccer games and dance recitals that are happening now. You can’t enjoy your children’s laughter because all you can think about is how you will get through the next round of treatment, the one after that and the one after that. Ultimately, your body has spent all it has, and the treatments are no longer working. Those goals that you hoped for are still years away, but your body is dying. You feel robbed, cheated, angry, and fearful, and those emotions follow you through the dying process, again robbing you of the opportunity to manifest peace in your final breaths.

Hope Redefined

However, what if, upon the news that you have one to two years, you create new goals you hope to work towards? Maybe instead of dancing with your daughter at her wedding, you can share a dance with her at her prom, which is only a few months away. Instead of hoping to see your son graduate, you shift your hope toward seeing him win a soccer tournament. With these more attainable goals in mind, you work with your care team to find a balance in medications that allow you to maintain a quality of life and truly enjoy being present in the moment. When you take your last breath, you find peace because, although your life was much shorter than you wanted and future milestones were stolen from you, you were fully resent in your kids’ lives, and your own, for as long as possible.

In the first scenario, the hope for an unlikely miracle prevented you from finding enjoyment in any aspect of life, but in the second, hope for spending quality time with your children at the cost of length of life brought much more enjoyment in your final days.

Working to redefine what hope’s role in the end of life means for you can be overwhelming and confusing. Bringing in an end-of-life doula will provide you with the opportunity to review those things that are hoped for and empower you to redirect your hope in a way that will bring peace to you in your final breaths. If you find yourself in this situation, please reach out to me. There is hope. We might just have to tweak it a little.