Innovations in Caregiver Support During Hospice

Usually I devote this space to profiling “what works,” a program or initiative that’s improving health care and has the potential to spread to other communities. This time I want to take a step back, looking at three research projects aimed at developing something that may work—something that may improve end of life care for both the patient and the family.

Unlike much of the health care system, hospice is supposed to take care of the family, not just the patient. Doctors, social workers, chaplains, home aides, volunteers, and of course nurses all interact with both the dying person and the family caregivers, offering medical care, practical assistance, and psychosocial support. But naturally the dying person tends to be the focal point. And afterward, hospices are supposed to provide bereavement services. But how comprehensive are these services? How useful? And how much on point? How much do they address the day-to-day concerns of a family member, particularly a widow or widower, adjusting to both the practical and the emotional aspects of life alone? The goal isn’t to reinvent the hospice wheel but to make it revolve a little more effectively.

I met several members of the research team, most of whom are affiliated with the University of Utah College of Nursing, at a recent conference in Bethesda sponsored by the National Institute of Nursing Research, “ The Science of Compassion: Future Directions in End of Life Care.”  I later followed up with Kathleen Mooney, RN, PhD, a nursing professor at Utah. The work is supported by the National Cancer Institute. While the families participating in these three linked studies are all dealing with terminal cancer, some of what’s learned should be broadly applicable to other diseases.

One study uses an automated phone system to gather information about the patient’s symptoms as well as the caregivers’ stress or distress. The second audiotapes the in-person interaction between the nurse and the family during home visits. The third hones in on bereavement.

The first project, the call-in system, builds on work that Mooney did earlier with patients undergoing chemotherapy. The patients would call in to report their side effects and symptoms, which the computerized system behind the phone interface would track and analyze. Serious or worsening problems were flagged, and health care providers were alerted. Symptoms were managed; crises were averted.

The Utah researchers are developing a similar tool for hospice patients and their families. The caregiver calls in daily, giving information about the patient’s symptoms and their own responses to those symptoms. It may sound a bit impersonal (“Nausea? Press 1 for yes, 2 for no”), but Mooney said it’s designed to be quite personalized and responsive, and families seem comfortable with it.

The questions aren’t only about the dying person. The system asks eight specific questions of the caregiver. “Did you have trouble sleeping?” “Are you anxious?” “How confident did you feel giving the needed care?” That confidence factor is a big one, and it doesn’t always get appropriate attention, Mooney noted. And with advanced cancer, symptoms and problems can change frequently and rapidly, requiring individually tailored responses. The responses are graphed, and certain patterns or levels of distress trigger an alert to the hospice nurses, all of whom are equipped with iPads.

“The hospice nurse then gets information about what’s out of control—or rather gets information before it gets out of control,” said Mooney. That relieves stress and suffering and may make it a lot less likely that panicky, frightened, or overwhelmed family members won’t rush the hospice patient right to the emergency department, where the care is what they left behind when they opted for hospice.

The symptoms are graphed by the computer behind that phone system. “Is it a new problem, or is it getting worse, or is it getting better but not fast enough?” Mooney said. And it’s not just the patient’s nausea that’s tracked; the caregiver’s emotional response is also analyzed.

In addition to that alert to the hospice staff, the automated system provides immediate feedback to the family through messages and advice on the phone to address the issue until the nurse responds. During the first three days of calls, even if all is going as well as can be expected, the phone system plays little modules of practical info and emotional encouragement. At any time, the families can call into an audio “library” of advice and information on nearly 60 topics, ranging from how to turn a patient in bed to what the family should expect as the patient gets closer to death.

If all this proves to work as hoped, the system would be accessible and affordable to even a small community hospital, Mooney said.

Researchers hope (the data aren’t in yet) that the computer feedback helps hospice nurses use their home visit time better. It may help prioritize which family may need a home visit ASAP and which can do just fine for another day or two. The nurse will also have more knowledge of what’s going on for the patient and family before she even walks in the door, so she’ll know what she has to concentrate on. That includes concentrating on the caregiver. It’s not that hospice nurses never talk to the caregiver; I’ve done quite a bit of reporting about hospice, and I’ve certainly witnessed those conversations. But they don’t always happen, and they may not go deep enough. It’s easy to imagine the nurse asking, “How are you doing?” and the caregiver weakly smiling and saying, “OK,” before steering the conversation back to the needs of the dying person. But if the nurse knows that the husband, wife, son, or daughter hasn’t been eating or sleeping and is reporting sky-high levels of stress and anxiety to the computer, that weak “OK” won’t cut it.

Although the data aren’t in, Mooney said the anecdotes are trickling in from nurses who say that they are learning more, thinking more, and acting more regarding the caregiver. “This is stuff I haven’t talked to them about before,” she hears the nurses say. “Normally I wouldn’t ask them about that.”

“That can be missing for the caregivers, who are so focused and devoted,” Mooney said. “But we need to make time to bolster the caregiver—help them cope. We need to make sure they give themselves permission to take some time off, to sit in the garden, to relax, to watch their favorite TV show.” It’s important that the caregiver knows that the hospice team acknowledges, understands, and cares about their exhaustion.

That’s a perfect segue into the second project, the audiotaping. Each time the nurse does a home visit, she wears a little mike that records the conversations, which are then coded and analyzed. The goal is to learn what is and is not communicated and to capture how that communication changes over time.

“If, for instance, there are 15 home visits, does the focus of the communication change?” Mooney asked. “How does the relationship develop between the caregiver and the nurse? How much is the nurse talking, and how much is the nurse listening? How much time does the caregiver get to talk about their needs?”

The study will also assess how much they talk about the medical aspects of patient care versus the emotional and spiritual needs of the patient and family. The researchers hope to identify which types of communication lead to the best outcomes.

The third project is on bereavement. This isn’t as nurse focused; the bereavement is done by specially trained staff. Ultimately, once best practices (or at least an assortment of good and useful practices) are identified, hospice volunteers could be trained to take on this role.

According to Mooney, many hospices check in with the families during the weeks or months of grieving. There’s a call, a note, or maybe an invite to some kind of group or meeting. But they don’t necessarily do a lot proactively, and what they do offer may be generic, not tailored to how a specific family is adjusting. People who have been immersed in disease and dying are now adjusting not only to the emotions that accompany loss but also practical aspects of getting on with life, of taking on the tasks that the partner once took care of.

“How do you get back in and form new social ties and activities?” Mooney asked. “How do you get back into life now that you are not partnered and not focused on the illness?” The bereavement support teams that they are testing are spending time, by phone and in person, addressing both the grief and the practicalities, whether it’s figuring out how to use Quicken or locating the lint trap for the dryer. It’s normal to ruminate, mourn, and pine but also to have times of moving forward. “The healthy pattern is to oscillate,” Mooney said. Grief is normal and necessary, but so is going to lunch.

If the outcomes are good (less depression, less “complicated” grief, and better overall adjustment), then the model can be adapted. Hospice volunteers could step in. “It would be easy for hospices to set up and deliver,” Mooney said, “if we can show them that organizing volunteers would get a big benefit.”


Contributing Writer Joanne Kenen writes monthly news features for the Health Policy Forum discussing health policy innovation and “what works” in our health care system, as well as the politics of health policy and reform. As a leading nonprofit health care research and consulting institute dedicated to improving human health, Altarum encourages open discussion and debate about the many challenges in health care today. All postings to the Health Policy Forum (whether from employees or those outside the Institute) represent the views of the individual authors and/or organizations and do not necessarily represent the position, interests, strategy, or opinions of Altarum Institute. Altarum is a nonprofit, nonpartisan organization. No posting should be considered an endorsement by Altarum of individual candidates, political parties, opinions, or policy positions. Read more.

Leave a Comment

(In order to leave a comment, you must supply information for all of the required fields below)


Note: Comments are subject to approval and moderation. Please keep your thoughts brief and avoid ALL CAPS. Thanks for joining the conversation.

Health Policy Forum Contributing Writer