Means to a Better End
Research shows supportive care may extend and improve life for people with advanced cancer
Susan Urba, M.D., knows palliative care has a major image problem. As a medical oncologist, she knows that giving care to relieve symptoms, even if it does not cure the underlying disease, can have a tremendous benefit on quality of life. But many people look at it as a sign of surrender. They even worry that taking medications to control pain could actually hasten death.
And for patients experiencing debilitating side effects from treatments aimed to cure cancer, palliative -- or supportive -- care can help.
"The term 'palliative care' is somewhat misunderstood," said Urba, medical director of the University of Michigan Comprehensive Cancer Center's Symptom Management & Supportive Care Clinic. "People associate it with giving up on treatment, when in fact its focus is on helping patients live more fully. Our goal is to help alleviate the symptoms and side effects that interfere with the things that people value most, like spending quality time with family."
In fact, new research suggests palliative care may actually extend life. Earlier this year, a study in The New England Journal of Medicine showed that patients with metastatic non-small-cell lung cancer survived longer if they had palliative care soon after diagnosis, even though many of them decided not to pursue aggressive treatment as their lives were ending.
What's more, patients who received palliative care reported lower rates of depression and higher quality of life. On average, they lived 2.7 months longer than those who received standard treatment without supportive care.
In an even larger study three years ago, an analysis of the medical records of 4,493 Medicare patients showed that hospice patients survived 29 days longer than those receiving standard care. Survival rates were significantly longer for those with lung and pancreatic cancer, according to the study, which was published in The Journal of Pain and Symptom Management.
One of the key components of supportive care is giving patients time to talk about how they want to live, Urba said. Because of advances in cancer treatment, patients have more options for care. But it can be difficult to know which choices will be right for an individual patient.
That's why it's important for patients to talk through what matters most to them and what the goals of treatment are. If the cancer is very advanced, is the hope of an extra week or two of life worth the often severe side effects that accompany aggressive chemotherapy? How would a patient prefer to spend the last days of his or her life? At what point is it time to stop trying chemotherapy for an advanced-stage cancer and focus on making the most of whatever time is left?
These conversations typically take place between the patient, family and oncologist. But occasionally a team member from the Supportive Care Clinic can be helpful by clarifying what kind of care can be delivered in the palliative setting.
"We encourage families to talk to their oncologist about these issues early in their cancer care to alleviate the burdens of decision-making -- both for patients and families -- if a person's condition worsens," said Suzette Walker, N.P.-A.O.C.N.P., co-director of the Symptom Management & Supportive Care Clinic. "We realize how difficult these conversations can be, but it's essential to have an open, ongoing dialogue so that patients have the opportunity to define and redefine what's important to them as their condition changes over time."
These conversations are very important to both patients and families, Urba said. Sometimes, patients feel the need to keep "fighting" the cancer for family members. Families also can suffer anxiety and depression related to treatment decisions if a patient becomes unable to make them for himself.
By working with a team of supportive care specialists, caregivers receive assistance in helping to keep their loved ones more comfortable as the disease progresses. Social workers are available as well to help deal with emotional concerns.
"Sometimes when we talk with families about hospice, people think it means giving up or that they're making a decision between living and dying. But that decision is out of their hands," Urba said. "We may not be able to control when we die, but we can decide how to live -- whether the time we have left is 10 days or 10 years."
Communicate your wishes
Talking about end-of-life care is difficult, but it's important to make your wishes known -- even if you don't have an incurable form of cancer. Having honest discussions earlier in your life can lessen stress and anxiety for both patients and families later.
- Talk to your doctor regularly about the goals of treatment. What is the likelihood of its success? What are the risks and benefits? Be sure to ask these questions again if your cancer evolves or your treatment plan is revised.
- Talk with your family about your values. How do you envision the last weeks of your life? What medical interventions would you want? What would you decline?
- Consider a living will or an advance directive that formally spells out your wishes about medical treatments to prolong your life. View an example.
Continue reading about hope and cancer recurrence/advanced cancer
- The Right to be Hopeful: One patient's story of recurrences in the midst of a rich life
- Understanding Cancer Recurrence
- Symptom Management & Supportive Care Program
- What is Palliative Care?