Susan Chang, MD
Caregivers often take on a large, central role in helping their loved ones through brain cancer. But the new initiative reflects a growing belief in health care that identifying and addressing the needs of caregivers would improve care for patients.
“That patient-caregiver interaction is so critical,” said neuro-oncologist Susan Chang, MD. “We think that addressing the needs of caregivers is important for addressing the needs of our patients.”
Chang will be a featured speaker at the American Brain Tumor Association (ABTA) Patient-Family Connections Meeting this week in Chicago. Aimed at brain tumor patients, cancer survivors, their families and friends, and health care professionals, the meeting will also feature a dinner speech by Victoria Reggie Kennedy, widow of Senator Edward Kennedy, who died from brain cancer in 2009.
Earlier this year, Chang published a report on a major clinical study outlining the needs caregivers experience as they help their loved ones through treatment for a brain tumor. Guided by the findings of the report, the UCSF Division of Neuro-oncology in the Department of Neurological Surgery began exploring ways to build better support for caregivers into the standard of care for brain tumor patients at UCSF Medical Center.
Leading Cause of Cancer Death
Brain tumors are second only to leukemia as the leading cause of cancer death among children and men under 40. More than two-thirds of those diagnosed with malignant brain cancer die within five years, and this form of cancer claims about 13,000 American lives a year. Every day, about 500 people are diagnosed with brain tumors.
The National Cancer Institute (NCI) estimates that at least $3.7 billion is spent in the United States each year treating brain cancer, but this figure does not take into account the often staggering physical, mental and emotional toll paid by patients and the friends and family around them.
From a doctor’s point of view, the primary challenge in treating brain cancer has not really changed, Chang said. The goals of treatment have historically been to find, safely remove and ultimately eradicate tumors, and advances in the field usually address this challenge directly — whether aimed at finding better ways to image tumors, improving surgical techniques or identifying new drugs.
But people with brain cancer often become confused, suffer memory losses or undergo other cognitive changes that impact their relationships with the caregivers. Because of those changes in mental state, their caregivers are often called upon to play an increasingly significant role in hospital visits and overall care.
Some of this help is logistical. Depending on which part of the brain is affected, patients cannot always pass accurate information to their doctors, remember to take their medications, or even find their way to the hospital. Caregivers may be involved in the day-to-day nuances of the cancer and its treatment — playing multiple roles, from chauffer to concierge to interpreter.
“When you see a patient in our clinic and interview them, their perception and ability to communicate may not be in sync,” Chang said. “If you don’t speak to the caregiver, you’re missing a big part of taking care of the patient.”
But caregivers often have to step beyond such straightforward forms of assistance to offer more profound help, from gathering detailed health information for doctors to making major treatment decisions. Therein lies an opportunity to improve care, according to Chang.
Helping caregivers become better and more informed agents in their new roles may lessen their anxiety. This, in turn, may lessen the anxiety of their loved ones and improve their quality of life.
Studies have shown that people with cancer who enjoy a greater quality of life generally live longer, Chang said. While he and his colleagues have yet to demonstrate that their new efforts have achieved such a tangible result, they have taken the first step by identifying what caregivers need.
Addressing Unmet Needs of Caregivers
In a clinical study published earlier this year in the Journal of Neuro-Oncology, Chang and her colleagues conducted a survey of 83 patients and 83 caregivers, asking them to identify their greatest needs, whether met or unmet.
One of the main issues caregivers identified was the need to have comprehensive but understandable information available to help them understand the disease, its treatment and the ways in which they can help their loved ones. Many of the study participants reported feeling untrained and unprepared for their new roles.
Such data has helped lead to additional services as part of the comprehensive care offered to patients at UCSF Medical Center. For example, with the help of funds provided by the American Brain Tumor Association, the Neurological Surgery Department has built a patient waiting room with a computer hub, free Wi-Fi and a library filled with patient education resources.
Plans also call for addressing in the coming years what Chang and her colleagues consider the single most pressing unmet need among the caregivers: emotional support.
Caregivers take on demanding and time-consuming responsibilities, sometimes facing fundamental treatment decisions over the course of multiple surgeries and rounds of chemotherapy. Those decisions more often than not ultimately end with the death of their loved one.
Addressing caregivers’ emotional needs is complex and will demand individual attention, Chang said. The department plans to hire staff including nurses, social workers and patient relations liaisons to assist both patients and caregivers with the issues that arise. It also is creating a new training program to help UCSF faculty and staff build stronger relationships with patients and their caregivers. In addition, the department plans to create a Family Advisory Panel to identify the most helpful programs for the future.