Across the United States, millions of Americans live with health conditions that limit their daily activities. Whether it’s a chronic problem like arthritis or an acute disease like cancer, these health issues frequently cause troubling symptoms such as pain and fatigue, reduce an individual’s physical abilities, and lead to emotional distress.
Medications and procedures can treat these conditions, but patients often need additional care to help them manage daily life. Palliative care can control symptoms, but many people also need support to handle the stresses that come with illness.
Through palliative psychology, Duke Psychiatry & Behavioral Sciences faculty members Katherine Ramos, PhD, and Laura Porter, PhD, are at the forefront of supporting patients in navigating the emotional complexities associated with illness and its impact on their lives.
The Role of Palliative Psychology
Palliative care is frequently associated with end of life. But this area of medicine isn’t only available to people with a terminal illness, Ramos said.
“Many people synonymously link palliative care to hospice care that is primarily delivered during the last six months of life. That’s the biggest misconception,” she said. “Palliative care is an overarching umbrella of holistic care that can begin either when a patient is diagnosed or when their condition begins to progress.”
And palliative psychology goes a step further. This unique discipline emerged around 15 years ago to help patients navigate the emotional impacts their condition may trigger. Initially, palliative psychologists existed only as part of Veterans Administration (VA) care teams. However, thanks in part to efforts by Ramos and Porter, their services are becoming more widely available.
Duke is one of few institutions nationally outside of the VA to offer palliative psychology services, with clinicians who provide counseling and behavioral strategies that can improve a patient’s overall well-being. Palliative psychologists help patients grapple with existential questions about life and death or what quality of life means. These providers also teach strategies that foster better family communication about care management, treatment goals, and future planning.
Palliative psychologists also understand that a patient’s mental and emotional needs may change as their disease progresses. As a member of a patient’s care team, they’re well positioned to address these shifts. They work alongside social workers, primary care providers, physical and occupational therapists, and other clinicians to achieve this goal.
“Anyone living with or facing a serious life-limiting illness deals with a lot of stressors, and their families do, too. There are a lot of psychological impacts that come with managing and coping with serious illness and disease. As palliative psychologists, we have a critical role to play in how we support these patients and their loved ones.”
— Katherine Ramos, PhD
“Anyone living with or facing a serious life-limiting illness deals with a lot of stressors, and their families do, too. There are a lot of psychological impacts that come with managing and coping with serious illness and disease,” Ramos said. “As palliative psychologists, we have a critical role to play in how we support these patients and their loved ones.”
The Clinical Impact
Duke Psychiatry has several providers with palliative psychology expertise who can work with individuals, couples, and caregivers. Many patients are referred by other palliative care providers, but some individuals self-refer. Depending on the patient’s needs, the psychologists offer weekly, monthly, or as-needed care. Much of their focus centers on identifying what is most important to the patient and helping them learn and apply coping strategies to maximize their quality of life.
“A lot of our work is based on cognitive behavioral therapy, where we examine the patient’s thoughts or behaviors and how they impact how well the patient adjusts to their condition. We also use strategies like mindfulness to promote acceptance and to help them process difficult feelings and emotions.”
— Laura Porter, PhD
“A lot of our work is based on cognitive behavioral therapy, where we examine the patient’s thoughts or behaviors and how they impact how well the patient adjusts to their condition,” Porter said. “We also use strategies like mindfulness to promote acceptance and to help them process difficult feelings and emotions.”
Another important facet of their clinical work is helping couples learn to communicate better. During a serious illness, many partners struggle to share their thoughts and emotions with each other, leaving many important things unsaid. Consequently, it’s critical that they learn to be better speakers and listeners.
“When you’re dealing with illness, there’s a lot of avoidance of difficult topics and fear of upsetting the other person. This can lead to misunderstandings, and it reduces your ability to support each other and feel close,” Porter explained. “Addressing that avoidance can help people tackle some of the more difficult topics together.”
Expanding Clinical Care
The World Health Organization estimates that only 14 percent of people who need palliative care receive it, leaving a burgeoning need for more providers—and Duke has stepped in to help. To grow this pipeline, Porter created and launched a palliative care elective rotation as part of Duke Psychiatry’s clinical psychology doctoral internship program in 2018. Porter and Ramos supervise interns on this rotation.
Interns who choose this elective rotate through palliative care one day a week. They also spend two half days a month shadowing Chris Jones, MD, Duke Health’s director of outpatient palliative care.
“Under our supervision, these interns conduct assessments and provide therapy to patients and family members,” Porter explained. “But they are also ambassadors of psychology to palliative care. They provide input to the palliative care providers about when a patient or family member might benefit from a referral to a psychologist.”
Professional development is equally as important, Ramos said, so she and Porter founded a palliative care special interest group within the Society of Behavioral Medicine in 2020. It’s a network where interested psychologists and other behavioral scientists can collaborate and share their palliative care experiences.
Investigating New Ways to Communicate
Ramos and Porter are both funded by the National Cancer Institute to conduct palliative psychology research. Their work could enhance communication skills for both patients and their loved ones.
With support from a career development award, Ramos is designing an intervention focused on older adults with both cancer and mild cognitive impairment. During this trial, Ramos and her team will teach participants and their partner—an adult child, spouse/committed partner, or friend—distress coping skills and methods to best support each other during six one-hour telehealth sessions.
In addition, Porter has an NIH-funded grant focused on teaching communications skills to patients with advanced lung, gastrointestinal, genitourinary, breast, or gynecological cancers and their spouse or committed partner. During the randomized trial, couples are randomized to complete six telehealth sessions focused either on communication skills training or healthy living education about topics such as nutrition, physical activity, fatigue, and sleep. Porter will evaluate their communication abilities and psychological adjustments at the beginning of the trial and after three months.
The goal for these investigations is to give people the skills needed to strengthen their relationships during tumultuous times.
“We hope to see people increase their communication skills so they have greater relationship satisfaction, decreased levels of psychological distress, and better symptom management,” Porter said. “We hope to show that better communication helps them approach the illness as a communal problem as opposed to it being solely the patient’s issue.”
Helping Patients Feel Seen & Heard
Ultimately, Ramos said, life-limiting illnesses can be frightening and frustrating. The value of palliative psychology lies in how it makes a patient with one of these conditions feel.
“Illness is a physically and psychologically isolating experience. It’s a significant privilege and opportunity to bear witness to what each patient is going through,” she said. “We’re able to say, ‘I see you, and I’m here with you even if I don’t have your disease.’ We can show them that we fully understand what it’s like to live their lives day by day—and that they don’t have to go through it alone.”
“We’re able to say, ‘I see you, and I’m here with you even if I don’t have your disease.’ We can show them that we fully understand what it’s like to live their lives day by day—and that they don’t have to go through it alone.”
— Katherine Ramos, PhD