A few years ago, University of Colorado Cancer Center member and hospitalist Sarguni Singh, MD, began to notice a troubling trend: Older adults with cancer who were leaving the hospital for skilled nursing facilities after treatment were being readmitted to the hospital or having worse outcomes while in rehabilitation.
“We’d hear stories about how challenging their experiences were in the rehab setting. They often had poorly controlled symptoms,” says Singh, who primarily cares for older adults who are hospitalized with cancer. “When we discharge people to nursing homes, the patients and their oncologists hope that people will get stronger with rehab, then be able to get more cancer treatment, or at least go back to living independently at home. The clinical pattern of care we were seeing was that that wasn't happening.”
Data-driven decisions
After conducting a study that showed that some 80% of Medicare patients who were hospitalized for cancer treatment never went on to receive further treatment, Singh and her cancer center colleagues began looking for an intervention to better support cancer patients after hospitalization.
Singh knew of an intervention called Assessing and Listening to Individual Goals and Needs (ALIGN) — a palliative care social worker-led protocol aimed at improving quality of life, aligning goals of care, and providing support to patients and caregivers — and she began using it for cancer care.
“We enroll patients in ALIGN during their hospitalization, along with the caregiver who is most involved in their care, and our palliative care social workers meet with the patients and their caregivers virtually every one to two weeks during their nursing home stay, which on average, is about three to four weeks,” Singh says. “The virtual meetings continue up to 45 days after discharge from the nursing facility, when the patient is back at home.”
Successful study and further research
Singh is the lead author of a pilot study, published in June in the Journal of Palliative Medicine, showing that a trial of the ALIGN intervention helped reconcile participants' misaligned expectations of rehabilitation with the reality of the patient's progressive illness; helped participants manage uncertainty and stress about forthcoming medical decision-making; allowed for iterative value-based goals of care discussions during a time when patients were changing their focus of treatment; and activated participants to advocate for their needs.
“The pilot study was to assess, ‘Is it feasible to do these virtual visits? Do patients and caregivers like it?’ The results were overwhelmingly positive, and patients and caregivers told us, ‘This was so helpful,’” says Singh, associate professor of hospital medicine in the CU School of Medicine. “We learned that the period of time they're in the nursing home and right when they return home is really active, in terms of people understanding their illness differently, deliberating preferences for care, and medical decision making.”
For example, she says, patients who had been in the hospital undergoing chemotherapy and are due to go back for more may decide it’s time to enter hospice care. Or caregivers may have a harder time taking care of a family member once they return from rehab.
“What was happening in our pilot study was that some people got a little better at the rehab facility, but most of them stayed the same or did not improve the way they hoped,” she says. “Then all of a sudden they're back home, and the caregivers are struggling to take care of the patient who now has more functional disability, while also trying to help manage their care in terms of getting them in to see their oncologist and trying to understand the new state of their illness.”
With the feasibility of the ALIGN intervention for older cancer patients established, Singh next plans to conduct a randomized control trial to measure its effectiveness longer term. Thirty patients and their caregivers will receive the standard of care, while 30 other pairs will receive the ALIGN intervention. Outcomes will be collected at three- and six-month timepoints, and researchers will survey patients on their experience with the protocol.
“We're interested in looking at person-centered outcomes and utilization of access to hospice, emergency room visits, and readmissions,” Singh says. “We know that most older adults want to spend more time at home, and that hospice is generally underutilized at the end of life. If this intervention is successful, people will be engaging in hospice earlier, in a way that is aligned with their wishes.”
Double benefit
Singh is excited to study the ALIGN intervention further, not only for its potential to help patients, but to give comfort to doctors as well.
“The hardest part of being a physician is taking care of someone and feeling like you're not helping them and you're not doing right by them,” she says. “If things go well with this intervention, I’m not just sending people to rehab. I know there's a set of eyes working with a patient and their caregiver, following them as they go on their journey and offering increased support when they need it. That's more reassuring.”
