Harvey Max Chochinov, MD, PhD, FRCPC, is a Distinguished Professor of Psychiatry at the University of Manitoba and a senior scientist at the CancerCare Research Institute. Dr. Chochinov’s latest book is Dignity in Care: The Human Side of Medicine. View Dr. Chochinov’s disclosures.
Let me begin by saying that if you have received an end-stage cancer diagnosis and whatever you are doing to cope is comfortable for you, just keep doing it. But if it isn’t working as well as you’d like, here are some thoughts for you to consider.
First, I wish I had the words to take away your anguish or fundamentally change what is happening to you. But like a beautiful piece of music, a stirring play, or an engrossing book, endings almost always leave us longing for one more chorus, one more act, or one more chapter. That is how we humans are wired.
The details of when and how your life is coming to an end will likely color and shape your feelings of sadness, longing, and grief. This is perfectly natural. Like other losses you may have experienced throughout your life, you know these feelings are unavoidable. You need to give yourself permission to experience these emotions rather than searching for what may be ineffective ways of avoiding them, such as prohibiting conversations that trigger sadness, use of alcohol, or isolation.
Your difficult feelings mean that what is ending was important to you and that you were connected and engaged, either with people, ideas, responsibilities, roles, an identity, or a purpose. In other words, despite its challenges, your life mattered to you. And for humans, meaning is like oxygen; we simply can’t live without it.
As your life draws to a close, you may struggle with how to carry on when so many of the things that give you meaning are slowly being taken away. And how do you somehow sustain meaning to live out your final days, until time eventually runs out? Although there is no “one size fits all” response, here are some things for you to think about.
1: Meaning can come through reminiscence.
Approaching the end of life—whether you have days, weeks, months, or a year or 2 left—is the only time your entire life story, from start to finish, is available to you. Some people find meaning through a process of reminiscence. This allows them to integrate the pieces that have shaped their lives and, perhaps for the first time, see how these make sense within the fullness of their completed life. Like music, theatre, or literature, endings matter and shape the way we understand or appreciate the experience in its entirety. This kind of integration and broad life perspective might protect you from feelings of despair.
2: Remember that your life matters.
You may find yourself wondering whether your life mattered as you approach its end. It is worth remembering that never in the entirety of human existence has there been, nor will there ever be, another person exactly like you. However you see yourself, there is no denying the uniqueness of you. This may lead you to contemplate the importance of legacy and what of yourself you want left behind. Attending to your legacy can offer meaning and comfort for you and your family, even towards the end of life.
For some people, legacy is about expressions of love, regret, and forgiveness shared with those who matter. These words or conversations can generate memories that will extend beyond death and reside in the collective memories of those left behind. For some people, this is a time to share stories and memories, bestow insights or wisdom, express hopes and wishes, and offer guidance for those you care about. Dignity therapy is one way people anticipating the end of life can engage in these important, meaningful conversations. During dignity therapy, the therapist makes a written record of the conversation for the person to give to those they wish to carry their memory into the future. Talk with your health care team about what therapy services may be available to you.
3: Try to separate what approaching death can take away from you and what remains within your grasp that can help you sustain meaning.
Living with a life-limiting illness liked advanced cancer can challenge your ability to do many things. But the ultimate challenge, especially in the face of no longer being able to do those things, is your capacity to hold on to the essence of who you are.
What does it mean to be you when you can no longer do the things that were part of being you? Meaning often arrives by way of connecting with your essence or core as a person. Until you lose consciousness, which generally happens towards the very end of life, people usually maintain their ability to convey their thoughts or feelings. They can still embody the presence that is the uniqueness of who they are and the place they hold in the lives of those who care about them and those they are connected with.
Some people may also take comfort in knowing that, even towards the end of life, they are giving those who care about them an opportunity to follow a path of least regret. Every experience, conversation, disclosure, or time shared together with loved ones creates lasting memories and shapes the grief that will soon follow. Even when words are no longer possible, your presence offers those within your circle a place to gather and begin mourning; a place to comfort and support one another as they contemplate how to move forward in their lives without you. Whatever your final path towards death, know that it will imprint those who grieve your passing and how they face the end when their time comes. That is something you will shape, until you take your final breath.
“Preparing for and coping with the end of life is an important component of comprehensive cancer care. Members of the health care team can provide support to people with cancer, their caregivers, and their families in navigating this difficult time.” – Cristina P. Rodriguez, MD, medical oncologist at Seattle Cancer Care Alliance specializing in the treatment of head and neck cancers and the 2023 Cancer.Net Associate Editor for Head and Neck Cancers