Malenna Sumrall and her husband Ray sat in an outpatient clinic room at UCHealth University of Colorado Hospital. It was August 2014, and they had just moved from Alabama, where Ray had been a pioneering professor of social work until the creeping dementia of Parkinson’s disease had forced him to stop doing what he loved at age 75. Malenna, a PhD herself, became a full-time caregiver. That had been four years ago, and Ray had deteriorated since.
The doctor came in, a big guy with a lumberjack beard and dark hair pulled into a ponytail. Not long after saying hello and introducing himself, Benzi Kluger, MD, MS, turned to Malenna and asked: “How are you?”
She had been accompanying Ray to doctor appointments for years – since 2000, when he was first diagnosed, and more often since 2009, when the dementia became apparent. No one had ever asked her that.
“I’m overwhelmed,” she told Kluger. It was the first time she’d admitted as much to anyone.
Kluger, a University of Colorado School of Medicine neurologist specializing in movement disorders and behavioral neurology, had been far from alone in recognizing the exceptional burdens borne by the loved ones of those with Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis, Huntington disease, multiple sclerosis and other slow-burning attacks on the central nervous system. But he had been among the first to do something about it. A few months earlier, he had launched a palliative care clinic within UCH’s outpatient Neurology Clinic to meet the needs of not only patients like Ray, but also caregivers like Malenna.
Not just end-of-life
From the beginning, Kluger had to break through preconceived notions about palliative care. Its association with cancer and hospice gave some the impression that it meant giving up on patients.
“Palliative care is an approach to care of patients with serious illnesses and their families that may be appropriate at any time during the course of an illness,” he said. “The goal is to improve patient and family quality of life and reduce suffering.”
Among those with neuro-degenerative diseases such as Parkinson’s, that suffering – particularly on the spiritual and psychological fronts – starts the moment of diagnosis, Kirk Hall can tell you firsthand. He was diagnosed with Parkinson’s in 2008 and has written both children’s books and a Parkinson’s-focused memoir on the topic, in addition to maintaining a popular blog and website under the handle “Shaky Paws Grampa.” Hall, 68, is both Kluger’s patient and advisor. Among the most important messages: patients’ fear of cognitive decline “is probably the number-one thing on the minds of people with Parkinson’s disease,” Hall said.
Added Kluger: “These patients are much more afraid of reaching a point where they don’t recognize family, are dependent on others, wearing diapers – it’s much more of a threat to them than the risk of dying.”
A big part of why neuro-palliative care works for patients and families is that it helps them make decisions during what Hall described as “middle-stage disease” rather than late-stage, when the stress on everyone is enormous and, as Hall put it, “the wolf is at the door.” Kluger and colleagues help sort out questions about in-home care, medical power of attorney and whether they’d prefer to die at home or in a hospital.
“That’s the big piece: to minimize the stress that’s going to go on in late-stage and turn it into a more peaceful thing,” Hall said. “My hope is my family will be able to look at the final stages with me and feel good about it.”
The process
The patent’s first neuro-palliative care visit lasts more than two hours, with diverse UCHealth providers visiting in succession to help patients and families set goals of care, do advance care planning, manage symptoms, talk through psychological and spiritual challenges, and deal with things like referrals and paperwork. Kluger handles the medical side and frames the discussion. He doesn’t mince words, Hall says, but “he’ll tell you the tough stuff and package it in a way that you don’t feel bad about it.” Sometimes it’s just about stating what most of us avoid thinking about: when he gives presentations, Kluger has a slide showing the mortality rate at a steady 100 percent. Recognizing death as an expected, inevitable process opens the door for people to make the most of the time they have left, he says.
Licensed clinical social worker Cari Friedman then helps with things like transportation, applying for disability insurance, and connecting patients with support services such as home health care. Ryan Khan, a chaplain with UCH’s Spiritual Care Services Department, helps patients and families work through what Kluger describes as “the very difficult emotions that come up – grief, guilt, frustration, anger – and helping people maintain hope and resilience in the face of something that’s incurable.”
Khan was there for Malenna and Ray Sumrall’s first visit. Ray would have continued working even if they’d had to wheel him in on a gurney, she said. But his mind no longer allowed it.
“When he realized that, it really kind of broke him,” she said.
Khan helped him find meaning, telling Ray he still had something to give, suggesting he write about his life and the things he had done.
“It was Ryan’s way of helping him find a way to derive meaning,” Malenna said.
The neuro-palliative care team also focused on Malenna, reviewing the setup at home, confirming that she was taking care of herself, and helping her understand the difference between a health care emergency and signs of inevitable decline.
“We spend more than half our time talking with the caregiver to make sure they’re well-supported, taking care of their own health needs, and not burned out,” Kluger said. “They’re the lynchpin, and if they fall, everything else is going to fall apart.”
By early 2015, Ray’s condition had worsened to the point that Kluger and colleagues suggested in-home palliative care and, later, hospice. He died that October, but not in the hospital.
“My husband was allowed to die at home,” Malenna said. “That was huge.”
Bigger, better
Kluger’s neuro-palliative care clinic was among the country’s first, starting in 2013 with a half day a month. It grew and improved with the help of a UCH quality improvement grant later that year. By November 2016, the once-a-week clinic had become the basis for what Kluger believes to be the country’s first official palliative care section within a Department of Neurology. When Christina Vaughan, MD, starts in August, the clinic will expand to five days a week on the Anschutz Medical Campus. The palliative care program supports other clinics as well, such as a monthly group clinic to help newly diagnosed Parkinson’s disease patients and their families land on their feet.
Kluger aims to expand in other ways, too. He would like to offer neuro-palliative care to patients in UCHealth satellite clinics such as Boulder and Lowry. He also wants to embed neuro-palliative care in UCHealth neurology specialty clinics treating patients with multiple sclerosis and dementia. (Neuro-palliative care is already on the menu in UCH’s Huntington disease clinic.) He would like to train UCHealth clinical teams who work with neurodegenerative patients on basic palliative care skills, such as providing diagnoses with compassion, advanced pain management skills, and working with advanced directives.
“Every patient needs palliative care, but not every patient needs to see me and our team-based clinic,” Kluger said.
In addition to working with increasing numbers of patients and caregivers, Kluger is leading two large clinical trials. One is seeing whether a combination of onsite and remote expertise can deliver effective neuro-palliative care clinics far removed from academic medical centers such as UCH. The effort combines the training of local physicians with telemedicine links back to UCH. That will let neurologists, chaplains, pharmacists, social workers, and nurses steeped in palliative care lend their expertise from afar. The 18 remote sites are a mix of urban and rural clinics in Colorado, Wyoming and California.
The other big clinical trial is enrolling 70 patients each at UCH; the University of California, San Francisco; and the University of Alberta. The study aims to quantify how neuro-palliative care impacts patient quality of life and caregiver distress, and whether it reduces emergency room visits, hospital admissions and intensive care unit use. It’s such a new field that, despite rich anecdotal evidence of its positive impacts, there’s less in the way of concrete data that could factor into decisions to add neuro-palliative care to hospitals far and wide.
Among the patients serving on the advisory board for that trial are Malenna Sumrall and Kirk Hall.
“There’s nothing I know of out there that has more potential to improve the quality of life of people with Parkinson’s and their caregivers than palliative care,” Hall said.