Cancer is often framed in the language of warfare. It’s a battle against an unseen enemy, an epic contest of strength, endurance and will using an arsenal of disease-conquering weapons. Well-meaning friends and family tell cancer patients to be strong and keep fighting for their lives. Winning means beating death, at least for the present time.
But what if strength also includes coming to terms with the possibility of death — or at least starting that conversation with loved ones? What if winning doesn’t mean beating cancer, but making the time remaining as meaningful as it can possibly be? And how can you broach this emotionally fraught subject with the people you love?
“You have to start the conversation with your oncology provider, because you have to understand what a prognosis potentially looks like,” said Vanessa Sanne, interim director of palliative medicine for Compass Oncology, which has clinics in Vancouver, Portland and Tigard, Ore. “With breast cancer, we have a lot of tools in the bucket. Have a conversation with your oncologist about what lines of therapy are appropriate and what to expect because that helps you start that conversation with your family.”
Some doctors and oncologists might shy away from detailed discussions of negative outcomes, Sanne said. Patients might be hesitant to address the subject directly or they may believe that because the doctor never mentions death, it’s not a possibility. Doctors are treatment-focused problem-solvers but they aren’t necessarily trained to discuss the emotional or spiritual experiences of someone whose cancer isn’t responding to treatment, Sanne said.
A good way to bring it up with your oncologist might be to ask, “What can I reasonably hope for in this situation?” Sanne said. However, if you’re unable to talk about death with your doctor, Sanne encourages patients to see a social worker, counselor or palliative specialist. This kind of doctor or nurse is trained to provide comfort, manage symptoms and improve quality of life for anyone who has a serious illness such as cancer, at any stage. That includes making end-of-life decisions or helping the patient initiate difficult conversations with loved ones.
Sanne said it might be hard to know when to have end-of-life conversations. At what point is it appropriate to start talking in terms of remaining time? That, too, is up to the individual. She’ll need to decide with her oncologist when it’s right to discontinue treatment and pursue comfort measures.
That’s when some patients or family members “get hooked on a number,” Sanne said, and fixate on how many months, weeks, days and hours are left. But such exactitude isn’t always productive because “sometimes we can predict and other times we’re terrible at predicting,” Sanne said. Instead, Sanne suggested constructing “a framework without putting a number on it,” by discussing specific things that make life meaningful.
“It’s really about changing your focus of hope towards a cure to something else,” Sanne said. “Can I be hopeful for having my pain well managed? Can I have hope to spend time with the people I love? It’s about shifting hope to something achievable instead of this idea that the cancer’s going to go away.”
For those who are ready to discuss death with their doctors, families and friends, it can be hard to know where to start, especially since death and dying are socially taboo. And even though patients may be ready, loved ones may not. Is there such a thing as a positive conversation about death? Sanne, who’s been in the palliative care profession for 25 years, says “yes.”
“A good conversation about death has multiple aspects. It incorporates a spiritual element and a practical element,” Sanne said. “The spiritual element is, ‘What are you looking forward to? What are you afraid of? What is the afterlife like? What is the human experience of dying?’ The practical element is, ‘Where do you want to die? Do you want to die at home? How do we prevent dying in the hospital, if that’s something you want? What is hospice and how do we use it?’ ”
Conversations about death are highly individual and arise from the unique intersection of terminal illness and family dynamics, Sanne said, as well as the patient’s own feelings about mortality. Some patients may not want to know the prognosis, but they’re comfortable with doctors or nurses telling their families. Some patients “want to be treated with everything and go down swinging,” Sanne said.
Within families, reactions cover the spectrum. Some may wish to talk about the possibility of death while others can’t bring themselves to mention it. In couples, one partner may need to talk about dying while the other partner is adamantly opposed. Ultimately, it must be about what the patient desires, even if that’s hard for loved ones.
“You have a right to talk about your feelings and your fears with the people that you love the most,” Sanne said. “If you can’t negotiate that yourself, then find a social worker or palliative provider or someone who can help negotiate that conversation to make it less frightening for the family.”
For those who’d like a more in-depth guide to end-of-life issues, Sanne recommended “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” by BJ Miller and Shoshana Berger. Sanne said the workbook-style format makes it an effective springboard for difficult conversations.
“We don’t prepare people to have these conversations or make a checklist of what are the important things to do before you die,” Sanne said, noting that most people don’t have wills or advanced directives because talking about death is so distressing. When you’re dealing with cancer, you’re forced to come face-to-face with your own mortality in an emotionally charged environment, Sanne said, and people respond in ways both good and bad. Although it might seem counterintuitive, talking about death can ease the grieving process.
“The patient needs to find a safe place to have these conversations with a counselor or care provider so that they can process what’s happening,” Sanne said. “Then they can find ways to broach these conversations with family and loved ones the best way they’re able.”
