3 Things Cancer Patients Should Know About Palliative Care
For many, the term “palliative care” brings to mind end-of-life decisions. But its scope is actually much broader.
“Palliative care is really about living,” says Stephen Berns, MD, Division Head of Hospice & Palliative Medicine at University of Vermont Health Network, Holly & Bob Miller Chair for Palliative Medicine, and Associate Professor at The Robert Larner, MD College of Medicine. "Providing palliative care for cancer patients means helping them live well while they get their treatments.”
In fact, studies show that patients who receive palliative care early in their cancer treatment often experience less pain, less anxiety and may even live longer. One landmark study in The New England Journal of Medicine found that patients with advanced lung cancer who received early palliative care spent less time in the ICU and lived an average of three months longer than those who didn’t.
“We're an extra layer of support,” says UVM Cancer Center member Elise Tarbi, Ph.D., APRN, and Assistant Professor at the College of Nursing and Health Sciences. "My goal as a palliative care provider is to figure out who you are and what's most important to you, so that I can align your care plan with that.”
Timing is Everything
According to American Society of Clinical Oncology guidelines, palliative care should begin at diagnosis for any patient with advanced cancer, or those at high risk for serious symptoms.
At UVM Health Network, many hospitalized cancer patients are assigned an interdisciplinary palliative care team early on in their treatment. This team—made up of doctors, nurses, social workers and spiritual care providers—works alongside the oncology team to manage symptoms and provide emotional and spiritual support.
But you don’t have to wait for a referral. Any cancer patient or their family can request palliative care at any time.
Palliative care providers also help patients think through treatment decisions. "We often talk in hypotheticals, such as: 'If you were to get sick or find yourself at the end of your life, what might be important to you then?'” says Dr. Tarbi. “It helps normalize these kinds of conversations early on.”
Dr. Berns adds, "Too often, our health system lets the runaway train move on without allowing patients to say, 'Hey, time out. Does this align with who I am and how I want to live my life?' Our job as palliative care providers is to be that squeaky wheel in the system.”
It’s a Conversation, Not a Conclusion
At its core, palliative care is about communication. Providers ask the patient how they prefer to receive information, who should be involved in the discussion and what they already know about their illness. “Sometimes, cancer patients hesitate to ask their cancer specialist questions,” Dr. Berns says. “We want them to know that it’s OK to say, 'Where is this all heading?'"
Very often, these conversations go deeper. "I tell patients that I'm open to talking about even the scariest things they might be thinking about,” says Dr. Tarbi. “They don't have to be alone with all the scary thoughts going on in their heads.”
Bottom Line: Palliative Care Supports Patients
Palliative care is about making sure your care reflects your values, goals and quality of life. And it works. “Typically, when we pay attention to someone's quality of life and who they are and what's important to them, they're happier—and that probably leads to better health,” says Dr. Berns.
And while fostering conversations around the "what-if's" of a patient's cancer journey may seem at odds with the themes of fighting and hope, most palliative care providers don't see a conflict. “You can be aggressive with your cancer treatment while also wanting to be comfortable," says Dr. Berns. "It's sometimes hard in our medical system to deal with gray areas and nuance—yet that's where palliative care lives.”
Patient and Caregiver Resources
- Speak Sooner: A center for communication in medicine
- Vermont Ethics Network: Information about palliative and end-of-life care in Vermont
- Prepare for Your Care: Tools to help patients and caregivers talk about medical planning and decisions
- The Conversation Project: Offering toolkits for starting conversations about care through end of life
