Carol Curtiss, a clinical nurse specialist consultant in palliative care based in Greenfield, Mass., says that advance directives are important, but just as important is the conversation about goals of treatment that can bring together the patient, the family and the healthcare team.
“When you are first diagnosed, cure is often the goal, so the conversation about the end-of-life care evolves as it becomes clearer treatments are not working,” she says, adding that the indicators that treatments aren’t working will vary. “The cancer may grow; the cancer may be stable but quality of life is not good. The decision to continue or stop treatment is highly individual. Some people want to be treated with anticancer therapy until death is near, regardless of quality of life, and others choose to focus on quality of life rather than quantity.”
When cancer treatments stop working, the patient, family members and healthcare team should discuss what can be done and, more importantly, what should be done based on the patient’s preferences and wishes.
Curtiss recommends a conversation that seeks to answer these questions:
- What is important to the patient now and in the next six months?
- What is the goal of treatment, if one is suggested?
- Will this treatment cure the cancer or is it meant to manage symptoms?
- Is the treatment intended to buy some time or extend the patient’s life?
- What will the patient’s quality of life be with this treatment?
- What will the patient’s quality of life be without this treatment?
- If the patient refuses this treatment, will the healthcare team continue to be involved with the patient’s care?
- Can the patient continue to come here for support if not receiving treatment? How can supportive care continue at home or in a hospice program?
Curtiss says some patients want to live long enough to reach a milestone or other goal, while others with the same disease and prognosis might decide not to go through additional treatment, focusing instead on quality of life. Decisions about end-of-life care are highly personal, yet when family members and the healthcare team have these discussions, everyone can work together to support the patient, Curtiss says.
[Tough Talk: Preparing for End of Life]