The responsibilities of caregivers taking care of loved ones at the end of their lives can be overwhelming. Not only do they face medical and physical responsibilities, they also must manage financial, emotional, and psychological stressors. This can lead to stress, anxiety, depression, and poor physical health.
Veerawat Phongtankuel, MD, a geriatrician at NewYork-Presbyterian/Weill Cornell Medicine, is committed to improving quality of care not only for patients receiving hospice care at home, but also for those providing support and assistance. Recognizing the burden that family caregivers shoulder, Dr. Phongtankuel and his colleagues conducted a scoping review to examine existing interventions, which provide educational and therapeutic support, targeted at caregivers of terminally ill loved ones. Below, Dr. Phongtankuel highlights some of the findings and what types of interventions may be most beneficial.
What role do family caretakers have in hospice?
Most hospice care is delivered in the home setting. While hospice provides at-home services from nurses, social workers, chaplains, and sometimes physicians, they typically only visit once every week or two. Given how severely debilitated these patients are, they require more frequent care, which positions a loved one as the main person providing care. These caregivers have to assume many different duties. Sometimes, they're doing the day-to-day duties like cleaning, dressing, and bathing. Sometimes, they’re coordinating with the hospice team and communicating with other family members about their loved one’s care. They also perform medical duties such as administering medication, like pain medications, which can be challenging when someone's not fully trained.
Why are interventions for home caregivers needed?
We have qualitative data that shows how critical caregivers are to home hospice care. If we have someone who's compromised for some reason, whether it's their mental or physical health, it's going to compromise the care of the loved one receiving hospice. If caregivers are less stressed, depressed, and anxious, it helps them better cope with an obviously difficult situation and make caregiving a little bit easier. Ultimately, that can help patients get better care.
What do you think makes a successful intervention for caregivers?
I think a successful intervention must be feasible for them. If you think about what these caregivers are providing, they're basically working a full-time job, and most of these caregivers already have a real full-time job. A study published in Health Affairs showed that family caregivers of patients in their last year of life provided 40 to 60 hours of care per week. We must meet them halfway and develop interventions that are feasible for them first. For instance, a three-hour session is not going to work for them. In our review, we found that shorter interventions are more manageable for the caregiver.
But it also depends on the type of intervention and what it is focusing on. If it's an educational intervention, it might be okay to do a quick 15-minute activity. But if it's an intervention where they’re learning better coping skills with a social worker or therapist, it might take longer and involve multiple sessions. From our literature review, the more successful studies we covered seem to have interventions with a shorter duration and frequency. While shorter interventions seem to show better results in our review, we still need to support family caregivers throughout this difficult process even after their loved one passes to help them through their grief and bereavement.
What are your next steps in researching caregiver interventions?
We are conducting a caregiver intervention study with our institution and a local hospice organization, VNS Health. We've developed a nurse practitioner-led intervention to help target caregiver concerns about their loved one’s symptoms. It consists of a weekly virtual with a nurse for up to six weeks. The program will help guide and educate caregivers about the symptoms of their loved one. The nurse practitioner can advise the caregiver on how to care for the patient if there's a worsening symptom or provide education if there's a symptom related to end-of-life care. This is an intervention that is in addition to the patient’s home hospice service that they get from their insurance. We're testing to see if it's feasible, and we're also looking at outcomes to determine if it's better than traditional hospice care.
The next steps in the field involve two things: The first is developing studies that will help determine which of these interventions are effective for caregivers. For the second, we need to determine how we can incorporate these interventions more broadly in hospices that may not have the resources to address the burden of caregiving.
