Finding Stability

End-of-Life Care Discussions Help Build a Treatment Plan Based on Values

Talking to your loved ones and your care team about what's important to you in life will help you develop a cancer treatment plan with quality of life as the focus.
Talking to your loved ones and your care team about what's important to you in life will help you develop a cancer treatment plan with quality of life as the focus.

Thinking about the progression of cancer can be scary. Your mind spins with all kinds of questions, fears and worries for your family. One way to get a grip on what’s to come is by having an end-of-life care planning discussion with your physician. Medicare recognizes the value of these conversations and started reimbursing physicians in 2016—for up to an hour of time dedicated to talking to you about your future and your wishes.

What is Advance Care Planning?

No matter your prognosis, it’s never too early to have an end-of-life care discussion, which involves much more than setting up a living will and healthcare proxy. Cancer treatment can take many unexpected twists and turns, and the main purpose of this conversation is to develop an understanding with your physician and family members about your wishes. By letting your doctor — and your family — know up front what’s most important to you in life, along with your religious and cultural beliefs, you can develop a treatment plan together that honors your core values.

Not everyone is comfortable having this talk, and if your survival odds are good, you may even feel as though you don’t have to. However, the conversation shouldn’t be framed around dying; it’s about how you want to live.

Benefits of Talking About End-of-Life Care

  • It Can Help You Develop a Plan Focused on Quality of Life
    By talking to your doctor about your values, you both will be better prepared to evaluate treatment plans based on quality of life rather than getting bogged down in probabilities and statistics. What side effects are you willing to endure from treatment, compared with the benefits? The Institute of Medicine (IOM) reports that most people who talk to their doctors about their wishes choose treatments that offer better quality of life as the primary benefit. Professional organizations like the American Society of Clinical Oncology recommend that physicians incorporate palliative care, which is aimed at reducing suffering, early on in treatment. According to the same IOM report, patients too often receive palliative care or enter hospice too late to get the full benefit from those services.
  • You Can Set Expectations for Your Family
    Everyone has different levels of preference for medical treatment. Some people prefer to be left alone early on, while others prefer to try many treatments or to enter clinical trials. Let your family know your wishes so they can support you.
  • You Might Save Money in the Long Run
    According to information compiled by the Kaiser Family Foundation, about one-quarter of Medicare spending goes toward services provided in the last year of life, and this has been true for decades. This racks up medical bills for little to no benefit. In a study reported on in the New England Journal of Medicine, people who requested full treatment over comfort measures were much more likely to be hospitalized—and the same article noted that less than 10 percent of Americans say they want to die in a hospital.

What to Discuss

The Conversation Project offers a starter kit for people interested in having this discussion with their doctors and family members. It can help you think through your answers, and lists questions you can ask your doctor.

Some personal questions to consider include:

  • How advanced is your illness, and how is it progressing?
  • What is most important to you in life? What things do you do that make life worth living?
  • What treatments would you — or would you not — want to have?
  • Where would you want to receive treatment, especially near the end of life?
  • How can hospice and palliative care fit into your treatment plan and help you do everything on your own terms?

Remember: You can always change your mind from what you discuss during the initial visit. Start by creating a framework that you can revisit and adjust throughout your journey.

 

National Healthcare Decisions Day

UVA Hospital & Cancer Center are recognizing this important day on Friday, April 15 from 10 a.m. to 4 p.m. Come to the lobby of the main hospital or Emily Couric Clinical Cancer Center to speak with a trained facilitator. Forms will be available.

Patricia Chaney
Patricia Chaney