Laura A. Siminoff, Dean of the College of Public Health and Laura H. Carnell Professor of Public Health, holds a grant from the National Cancer Institute to study the burdens taken on by individuals who care for family members with late-stage cancers. Here, she discusses how those burdens—psychological, physical and financial—can impact quality of life for patient, caregiver and family.
Q: What is “caregiver burden,” and why does it represent a problem for our society and our healthcare system?
A lot of the care provided to critically ill people no longer happens in the hospital. People are stabilized, they have surgery or other treatment—and then, relatively quickly, they are discharged back to their homes. Who’s going to care for these people? In reality, family members are providing this care. Some of the tasks are technically easy but also trying and tiring. Others are fairly complicated, like feeding tubes and IVs. It isn’t a new problem, but I think it’s only recently come to the recognition of healthcare providers and insurers and the public that there really is an issue here.
Q: What effects does long-term caregiving have on the caregiver, and on the patient’s family?
We know that individuals who do a significant amount of caregiving for patients—and who do it for long periods of time—actually have decrements in their own health. They are more likely to have high blood pressure, heart disease, or other kinds of serious health problems that seem to be linked to the stressors that come with providing care. Many of these people are not simply giving care to a patient; they are trying to do other things in their lives as well. Many have jobs, and some have dependent children still at home.
Caregivers may also have to quit their jobs to care for the patient. That puts a significant burden on them, especially because many people have health coverage through their employers—so when they leave their jobs, it means they’re also losing their health insurance. You can see that this kind of responsibility adds up rapidly, with people winding up exhausted and stressed. And stress—particularly long-term, chronic stress—has real implications for people’s health.
Q: What are the gaps in knowledge that you hope to fill with this research?
It’s unclear what the quality of care is for patients, given some of the things that caregivers are being asked to do. And that’s why we’re studying this: We want to look at the quality of the care that’s being given, and how difficult it is for individuals to give that care. Where should we be drawing the line? On one hand, some of the movement to transfer medical care from hospitals into homes has been a good thing. A lot of patients don’t want to stay in the hospital—they want to go home. On the other hand, if we don’t give proper support for people to provide that care in the home, we’re compromising the quality of care—and the quality of life—for everybody.
There’s an estimate that $3–$5 billion worth of care is provided through the informal caregiving system to cancer patients. That is a savings in the cost of professional care. But we need to prioritize—we need to ask ourselves, is that appropriate? Is it appropriate to ask so many people to give so much free care? Shouldn’t we actually be committed to paying for that in some way?
Q: So what’s the path forward that you’d like to see? How do we reduce these burdens?
We need proper insurance coverage for respite care: for trained, professional caregivers to come into the home and do some of the things we are asking families to do, so that the caregiver can get some rest. We need to recognize that if we don’t help families in the hard job of caring for somebody as they are sick and dying, then the caregiver’s health is going to be compromised, and the family’s economic life might be compromised too. From a policy point of view, we need to consider whether it’s really worth it to save a few dollars in the short term, but to create more sick people and more families in economic distress because the health system does not provide enough formal in-home assistance, such as home health aides or visiting nurses.