A diagnosis of cancer wreaks havoc on a family in ways both direct and indirect. While the main focus is placed on providing the patient with the treatment he or she needs, what too often gets lost in the blur of events that follows is the tremendous burden placed on the family members who play the unsung role of caregiver. Memorial Sloan-Kettering is part of a new movement in medicine that seeks to acknowledge this burden and to offer practical support to caregivers.
Shifting the Burden of Care
Traditionally, cancer care was given in an inpatient setting. Patients were admitted to the hospital and remained there throughout their entire treatment. During the last two decades, however, there has been a dramatic change in the delivery of cancer care. Many treatments, including chemotherapy and radiation therapy, are now delivered in outpatient clinics or during very short hospital stays, after which patients are sent home on the second or third day. While this new arrangement allows patients to spend more time in the comfort of their homes, it often places an enormous burden on the patient's family.
"The healthcare system is creaking badly, and the burden is falling unfairly on the caregivers," says Dr. Jimmie Holland, who holds the Wayne E. Chapman Chair in Psychiatric Oncology at Memorial Sloan-Kettering. "We ask families to do things that we wouldn't have dreamed of 15 or 20 years ago. It's extremely difficult for these people and too often there is no respite for caregivers."
A Laundry List of Caregiving Responsibilities
There is a wide range of responsibilities that caregivers have to provide, from administering medicines and assisting with a patient's physical therapy, to providing the moral support and TLC that family members struggling with an illness require. In order to provide this care, caregivers often neglect their own health. "It is not uncommon to see caregivers, once their loved ones are either healed or have died, being diagnosed themselves with a serious illness, which they had been ignoring," notes Dr. Holland.
Over the course of a long illness, women -- who make up the majority of caregivers -- can lose their social contacts. Wives tending to husbands with cancer or mothers caring for children with the disease can sometimes be overwhelmed by the stresses, which begin with their loved one's health and can extend into running the household and worrying about financial issues -- not to mention juggling their own needs. Family members also are responsible for the difficult task of administering medications, including pain medicines. This responsibility can be frightening, carrying with it the fear that if they make a mistake, they may harm their loved ones.
