Research explores improving quality of life and the care experience for people with serious illnesses in post-acute and long-term care.
Researcher:
Joan Carpenter, PhD, CRNP, ACHPN, FPCN
Assistant Professor
Areas of Expertise:
Carpenter researches gerontology and palliative care, focusing on older adults in nursing facilities, either patients receiving post-acute skilled care after hospitalization or residents living in long-term residential care.
“My research focus originated from my clinical work. When I was practicing as a primary care nurse practitioner in nursing facilities, I realized there was a real lack of palliative care expertise among the staff and other clinicians I worked with,” Carpenter says. “I was able to enhance my own skill set by becoming an Advanced Certified Hospice and Palliative Care Nurse, and use my expertise to improve nursing facility residents’ care as well as to educate my colleagues, students, and staff members.”
The BIG Idea:
Carpenter’s research explores ways to implement evidence-based palliative care practices to improve quality of life and the care experience for people with serious illnesses in post-acute and long-term care.
Carpenter’s ongoing research includes serving as the principal investigator (PI) on a three-year grant, “Palliative Care Consultations for Persons in the Medicare Skilled Nursing Facility Setting,” from the National Institute of Nursing Research (NINR), part of the National Institutes of Health. This grant focuses on educating geriatric-focused nurse practitioners in nursing facilities on primary palliative care delivery.
The nursing home setting has traditionally lacked access to specialty palliative care consultation teams because those services started in and focus on hospital settings. “What’s worked in the hospital is not going to work in the nursing facilities, necessarily,” Carpenter says. “When designing palliative care services, we have to adjust to each unique health care environment—for me that is optimizing the resources available in nursing facilities.”
Another area of Carpenter’s research examines specialty palliative care delivery via telehealth. She is the PI on a grant, “Implementation Outcomes of a Telehealth Palliative Care Model for Persons with Dementia in Post-Acute Care,” funded through the National Institute on Aging’s Alzheimer’s Disease (AD) and AD-Related Dementias Health Care Systems Research Collaboratory Pilot. This research leverages existing telehealth services in a nursing facility to expand the availability of specialty palliative care.
Why does the research matter?
“We have so many people who are aging with serious illness and living longer than they lived in previous years because of the advances in medical technology, the pharmaceuticals available, and how we’re able to treat illnesses and diseases,” Carpenter explains. “People live with serious illness longer, and we need to be able to provide the best care possible for them to manage symptoms and assist with decision-making about goals of care and treatment preferences.”
Providers should be able to have conversations about serious illnesses, what a patient and their family understand about their condition, and what kind of treatments they want for themselves.
Through her research, Carpenter has found that people want to discuss their illnesses openly. “I’ll never forget a patient who didn’t want the spouse to know about the illness and how they were feeling,” Carpenter recalls. “And the spouse didn’t want the patient to know. Once we were able to say, ‘Let’s talk about this together,’ they realized they both had not been communicating, because they were each scared of hurting the other and deep down, they did want to be able to talk about it. They were afraid to have the conversation.”
Who does the research matter to?
A lot of Carpenter’s work involves patients and families as stakeholders, as they help inform and devise the best ways to implement her research. It also matters to clinicians. “There’s a lot of distress among clinicians when they don’t know the best way to manage a serious illness or how to have a conversation about serious illness and decision-making,” she explains. In one educational session Carpenter conducted with nurse practitioners, a participant said, “You gave me the words that I need to have these conversations.”
The results of her research could also have reimbursement and policy implications. “We don’t want people receiving care that they don’t want at the end of life,” Carpenter explains. “We want to make sure goals are clear and treatment decisions are informed so that care received is congruent with care desired, and people are not receiving costly and unwanted potentially burdensome treatments.” Carpenter aims to translate research findings to influence health care reimbursement policies that support high-quality palliative care in nursing facilities.
For the general public, “people want to know that there are clinicians who will help take care of them and help them realize what their goals are and what kind of care they want when they go through serious illness,” Carpenter says.
What are the clinical applications of the research?:
Clinicians may think they know what someone wants and what treatments they want, but Carpenter’s research has found that “we really don’t know until we ask,” she says. “In serious illness care, it’s not about what we [as clinicians] think is best for someone. It’s about what a person who understands their illness and its trajectory wants for themselves.”
Clinical application of her research is about exploring with a person who has a serious illness their understanding of their illness and helping them with decision-making. Clinicians help fill any gaps in knowledge and also help to include any family or friends whom the patient wants to be involved in the conversation.
“It’s a skill set, but we can all learn it,” Carpenter says. “You don’t have to be perfect at it, but we need to do a lot more listening and a lot less talking. In serious illness care, we don’t know what symptom is most bothersome to the patient until we ask. We don’t know what distress they may be feeling because of their fear of end of life unless we ask.”