Transitioning Care: A Caregiver's Role

When Tammy Meissner’s husband, David, received a diagnosis of lung cancer in May 2013, she immediately assumed the role of caregiver. After all, he had done the same for her when she had breast cancer in 2005.

Meissner, a business owner in Corona, Calif., says she was probably more prepared to be a caregiver than a lot of people. “Having been through it myself, I knew what to expect and how to deal with different things."

Over the course of her husband’s treatment, which included the removal of one lung and several weeks of chemotherapy, Meissner became his “nurse, chief cook and bottle washer,” she says. She drove him to medical appointments, made sure he took his medications on time and cared for him through various experiences, including an unexpected blood clot and blood thinning treatment. It wasn’t easy, Meissner says, but she made it through with help from her husband’s care team at City of Hope in Duarte, Calif.

“They were right there every step of the way,” she says. “They made sure I had the tools, knowledge and support that I needed.”

Meissner is one of a growing number of Americans who find themselves thrust into the challenging role of family caregiver. In fact, a 2012 article in The Journal of Supportive Oncology estimates that of the 1.4 million people who receive a cancer diagnosis each year, nearly all will have family members involved in their care.

The extent of a caregiver’s involvement is predicated on a variety of factors, including the patient’s overall health, type of cancer and treatment regimen. But almost all caregivers play a vital role during care transitions, which can occur throughout the disease trajectory and across multiple settings, according to Anita Mehta, a nurse and co-director of the psychosocial oncology program at McGill University Health Centre in Montreal.

Caregivers make decisions, they make observations, they identify early complications and they are often involved in medication.

“Care transitions can extend from the point of diagnosis to treatment options to a transition to palliative care,” Mehta explains. “Even a transition to remission or survivorship is considered a major transition in terms of impact on the patient and family caregivers.”

Transitions occur in both the hospital and home settings, Mehta adds. For example, within the hospital, transitions can take place across various medical units. Care transitions in the home setting could include readmission to the hospital because of uncontrolled symptoms, going to the emergency room or moving to a palliative care unit or hospice if the patient’s condition warrants it.

Over the course of the illness, which could extend from months to years, family caregivers might be asked to perform a variety of tasks. “Caregivers make decisions, they make observations, they identify early complications and they are often involved in medication,” says Barbara Given, a nursing professor at Michigan State University in East Lansing. “It’s a huge responsibility.”

So, how can caregivers better prepare themselves for the transition from hospital to home? Eric A. Coleman, director of the care transitions program at the University of Colorado in Aurora, has developed Care Transitions Intervention (caretransitions.org), a program that strives to improve patient care by providing patients and family caregivers the skills, tools and the confidence they need to make transitions across care settings.

A key element of the program is a home visit and three phone calls from a transitions coach, traditionally a nurse or social worker. With duties that are distinct from those of other healthcare professionals who provide skilled services in the home, the transitions coach focuses on transferring core management skills that patients and families have identified as being most needed. These include administering medications, recognizing warning signs that could indicate a worsening of the patient’s condition and knowing how to respond, as well as coordinating timely follow-up care and managing and using a patient’s personal health record to facilitate communication.

Developing these skills can enable family caregivers to become more informed and effective members of the patient’s care team and help them make sure the patient avoids health complications and potential readmission to the hospital.

More than 900 healthcare organizations in 43 states have adopted the Care Transitions Intervention, Coleman, says, and the benefits are many. Foremost among them, he says, is that patients who have participated in the program were less likely to be readmitted to the hospital, and the benefits were sustained for several months following the one-month intervention.

“Thus, rather than simply managing post-hospital care in a reactive manner, imparting [these] skills pays dividends long after the program ends,” Coleman says.

Caregivers make decisions, they make observations, they identify early complications and they are often involved in medication. It’s a huge responsibility.”

Given says family caregivers now have a “major role and should be considered an integral part of the healthcare system.”

“Traditionally, when patients were diagnosed, a lot of care was given in hospitals and acute care settings,” Given says. “And a lot of the treatment happened there, so families were sort of peripheral. The issues now are such that the family is actually responsible for [most] of the care.”

Although Meissner didn’t participate in a transition program, she says “most caregivers would find that type of program helpful.”

“Family caregivers really need to take advantage of all the resources available to them,” Meissner adds. “It can help tremendously.”