Once a month, Al Hall takes out an iPad, fires it up and gets ready for a half-hour conversation. It’s a routine familiar to many who use a tablet or computer to connect with friends and loved ones miles away. Hall, though, reaches out for a different purpose: palliative care.
Hall, 70, has stage 4 non-small cell lung cancer. The discovery came after trips to UCHealth University of Colorado Hospital on the Anschutz Medical Campus to treat a sore back he thought he’d injured when he tried to lift his stuck garage door. When his providers gave him the bad news, he wondered how he’d progressed to the most serious stage of the disease, although he readily admits he smoked for many years.
“I figured there was no use in jumping up and down, screaming and yelling or anything like that,” Hall said. “I said, I got it so let me go ahead and deal with it. And that’s what I’ve been doing.”
He’s fighting the disease with Keytruda, an immunotherapy treatment he receives at UCHealth University of Colorado Cancer Center. But he gets additional support through the iPad, which he uses to speak with Dr. Jennifer Seibert, a palliative care specialist and board-certified family medicine physician. Seibert helps Hall and other patients with serious illnesses cope with the physical, emotional and spiritual challenges of disease and identify the goals and values that are most important to maintaining their quality of life.
Palliative care telehealth
Most often, Seibert meets with patients and their caregivers face-to-face at the Cancer Center. Now she is lead clinical provider for a study examining if palliative care visits conducted remotely with patients can be just as effective in improving quality of life, managing symptoms and increasing satisfaction for patients with newly diagnosed advanced lung cancer and their caregivers. The University of Colorado is one of 21 sites for the study, which is sponsored by Massachusetts General Hospital through funding from the Patient Centered Outcomes Research Institute. The Colorado-based Palliative Care Research Cooperative Group is helping to coordinate the trial.
The approach also includes initiating palliative care soon after the diagnosis and building close communication between palliative care specialists and thoracic oncologists. It’s a model that has shown promising results in bolstering coping skills in patients with advanced cancer and improving their quality of life.
A big problem, though, is that palliative care services aren’t easy to get for many patients, especially in Colorado and surrounding states with large rural populations, said Dr. Stacy Fischer, a palliative care and geriatric medicine specialist who is principal investigator for the study at CU.
“Palliative care is one of those specialties where the need far exceeds the supply,” Fischer said. “Finding innovative and successful ways of being able to spread that reach is really important.”
Fischer added that while the study isn’t analyzing the cost-effectiveness of palliative care telemedicine, “workforce realities are in play. We’re not going to have palliative care specialty clinicians in every small town. The issue is really about access for patients.”
Breaking down barriers
The study randomizes patients referred by their oncologists to either in-person meetings or the telehealth sessions. All patients who participate have an initial two-hour meeting with the palliative care team. Seibert said the discussion can help allay a frequent fear of many: that palliative care means hospice and end-of-life care.
Seibert said she and her team dispel the misunderstanding in positive terms. “I’ll say things like, ‘We’re the quality-of-life and whole-person team.’ That helps them to understand what our focus is.”
The focus, she added, is on providers listening to patients, not the other way around.
“I tell patients that ‘we are going to start with you. Tell me your story of who you are, who is your family, what matters to you,’” Seibert said. “Sitting down, taking a deep breath and focusing on the person outside of the illness is one of the most important things because who we are as a person and who we are as a family are the parts we are trying to connect with, and that often get lost in medicine.”
Following the initial meeting, patients meet with the palliative care team monthly, either in the same room or from their homes. The approach is the same: an emphasis on helping patients achieve “value-based goals” that provide purpose and satisfaction, Seibert said. Those could range from spending time with grandkids to walking to fishing to managing pain or anything in between.
“That’s the philosophic center of palliative care,” she said, “because it’s not enough to just get your body better if you can’t get back to the things you love. Those are the things that help people get through illness.”
Fischer emphasized that a must for the study team was building support for the early-intervention palliative care model among their colleagues in thoracic oncology.
“We wanted to ensure that they felt that it’s important not to wait until people have symptoms that are detrimental to their quality of life. Let’s start the process upstream, early on, when maybe things are going great,” she said. “Allow us the chance to build rapport early on.”
The response from oncologists was positive and borne out by the enrollment numbers, Fischer added. As of August the CU site had enrolled 23 patients and was on track to reach its three-year total goal of 60.
But does distance make it harder for provider and patient to develop the sense of trust that is fundamental to patient care? Seibert acknowledged that some patients in the videoconference group have told her that they initially found the remote encounters more difficult and “felt the distance,” while another is so comfortable that she considers them in-person visits.
Al Hall said conversing via the iPad “felt funny” at first. “When you see people in person, you can see their nonverbal communication and can see if they’re really interested in helping you or just going through the motions.” He’s gotten used to using the tablet, though, and the distance isn’t an issue anymore. Talking with Seibert, though, was another matter – at least at first.
Hall is a plain-spoken man who enlisted in the military at age 19 and served 24 years before returning to civilian life. He worked as a manager at Colorado Lace laundry in the Denver area, but left after it was bought out by another company. Hall also battled prostate cancer, as have two of his surviving brothers.
He knows the survival statistics for stage 4 lung cancer aren’t good. “Every once in a while I think about it, but I don’t linger on stuff like that,” he said. “That’s depression. Miracles happen but this [disease] right here, there ain’t no cure for what I got. Eventually something is going to take place.”
Hall has a wife and son, but he sees his struggle with cancer as an individual battle and one to be faced stoically. Talking about his lung cancer and the emotions that come with his diagnosis isn’t easy.
“I’m a closed-in person,” he said. “I don’t like to put my business in the street. You’ll never see me cry. I’ll go into a room and cry.”
It’s probably not surprising, then, that he approached the sessions with Seibert guardedly.
“The doctor, she tried to get me to open up, and I admit she worked pretty hard at it, too,” Hall said. “But I couldn’t tell nobody what I was going through. When we first started, she was doing all the talking and she would try to get me involved, but my answers were short and blunt. I didn’t want to do it.”
Closing the space
With time, Hall said he became more and more comfortable with talking to Seibert. She began to break down the barriers with a seemingly simple offer, he said.
“One thing she told me, and I’ll never forget it, is that if I ever needed anything, contact her,” Hall recalled. “Ain’t nobody ever told me anything like that.” He now looks forward to his time with Seibert. “Just to see her and remember what she told me lifts my spirits,” Hall said.
He admitted he still has trouble fully opening up about his feelings, but the conversations with Seibert encourage him to think about how the disease affects his life.
“Being with family and friends is a goal,” he said. “But what’s going to happen to my family? That was the first thing that hit me upside the head. What’s going to happen to my wife, how is she going to carry on, financially and emotionally? I still think about that now.”
There are no easy answers to those questions, but he’s not going at them alone.
“I would suggest that they continue [palliative care] because it does help, just to have a conversation that you can talk about anything,” Hall said. “[Dr. Seibert] brings it right back to the disease because she’s really trying to know how I feel about certain things.”
Al Hall and other patients in the telehealth study will help to shape the future of palliative care, Seibert said.
“We have to prove to payers that telehealth works, that connecting to people can work across a computer or a tablet screen,” she said. If that proves successful, she added, “that will mean that resources are available to more patients. That’s how we’re to change palliative medicine. This will grow because the need is so great.”
For more information about the study, contact Dr. Stacy Fischer at [email protected] or Mary Mancuso at [email protected] (email), 303-724-5729 (phone).