{"id":11356,"date":"2017-07-31T09:25:22","date_gmt":"2017-07-31T15:25:22","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=11356"},"modified":"2023-07-03T13:47:14","modified_gmt":"2023-07-03T19:47:14","slug":"palliative-care-for-patients-with-neurodegenerative-disease","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/palliative-care-for-patients-with-neurodegenerative-disease\/","title":{"rendered":"Palliative care gives peace to patients"},"content":{"rendered":"
<\/div>
\"Kirk
Kirk Hall reads his children\u2019s book, \u201cShaky Paws Grampa,\u201d to his grandkids. (Photo courtesy Kirk Hall)<\/figcaption><\/figure>\n

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<\/a> of Parkinson\u2019s 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.<\/p>\n

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: \u201cHow are you?\u201d<\/p>\n

She had been accompanying Ray to doctor appointments for years \u2013 since 2000, when he was first diagnosed, and more often since 2009, when the dementia became apparent. No one had ever asked her that.<\/p>\n

\u201cI\u2019m overwhelmed,\u201d she told Kluger. It was the first time she\u2019d admitted as much to anyone.<\/p>\n

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\u2019s disease, Alzheimer\u2019s 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\u2019s outpatient Neurology Clinic to meet the needs of not only patients like Ray, but also caregivers like Malenna.<\/p>\n

Not just end-of-life<\/strong><\/p>\n

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.<\/p>\n

\u201cPalliative 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,\u201d he said. \u201cThe goal is to improve patient and family quality of life and reduce suffering.\u201d<\/p>\n

Among those with neuro-degenerative diseases such as Parkinson\u2019s, that suffering \u2013 particularly on the spiritual and psychological fronts \u2013 starts the moment of diagnosis, Kirk Hall can tell you firsthand. He was diagnosed with Parkinson\u2019s in 2008 and has written<\/a> both children\u2019s books and a Parkinson\u2019s-focused memoir on the topic, in addition to maintaining a popular blog and website under the handle \u201cShaky Paws Grampa<\/a>.\u201d Hall, 68, is both Kluger\u2019s patient and advisor. Among the most important messages: patients\u2019 fear of cognitive decline \u201cis probably the number-one thing on the minds of people with Parkinson\u2019s disease,\u201d Hall said.<\/p>\n

Added Kluger: \u201cThese patients are much more afraid of reaching a point where they don\u2019t recognize family, are dependent on others, wearing diapers \u2013 it\u2019s much more of a threat to them than the risk of dying.\u201d<\/p>\n

\"Dr.
Dr. Benzi Kluger, MD, has been a pioneer in palliative care for patients with neurodegenerative diseases \u2013 as well as for those caring for them. (Photo Courtesy CU Office of Advancement)<\/figcaption><\/figure>\n

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 \u201cmiddle-stage disease\u201d rather than late-stage, when the stress on everyone is enormous and, as Hall put it, \u201cthe wolf is at the door.\u201d Kluger and colleagues help sort out questions about in-home care, medical power of attorney and whether they\u2019d prefer to die at home or in a hospital.<\/p>\n

\u201cThat\u2019s the big piece: to minimize the stress that\u2019s going to go on in late-stage and turn it into a more peaceful thing,\u201d Hall said. \u201cMy hope is my family will be able to look at the final stages with me and feel good about it.\u201d<\/p>\n

The process<\/strong><\/p>\n

The patent\u2019s 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<\/a>, 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\u2019t mince words, Hall says, but \u201che\u2019ll tell you the tough stuff and package it in a way that you don\u2019t feel bad about it.\u201d Sometimes it\u2019s 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.<\/p>\n

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\u2019s Spiritual Care Services Department, helps patients and families work through what Kluger describes as \u201cthe very difficult emotions that come up \u2013 grief, guilt, frustration, anger \u2013 and helping people maintain hope and resilience in the face of something that\u2019s incurable.\u201d<\/p>\n

Khan was there for Malenna and Ray Sumrall\u2019s first visit. Ray would have continued working even if they\u2019d had to wheel him in on a gurney, she said. But his mind no longer allowed it.<\/p>\n

\u201cWhen he realized that, it really kind of broke him,\u201d she said.<\/p>\n

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.<\/p>\n

\u201cIt was Ryan\u2019s way of helping him find a way to derive meaning,\u201d Malenna said.<\/p>\n

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.<\/p>\n

\u201cWe spend more than half our time talking with the caregiver to make sure they\u2019re well-supported, taking care of their own health needs, and not burned out,\u201d Kluger said. \u201cThey\u2019re the lynchpin, and if they fall, everything else is going to fall apart.\u201d<\/p>\n

By early 2015, Ray\u2019s 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.<\/p>\n

\u201cMy husband was allowed to die at home,\u201d Malenna said. \u201cThat was huge.\u201d<\/p>\n

Bigger, better<\/strong><\/p>\n

Kluger\u2019s neuro-palliative care clinic was among the country\u2019s first, starting in 2013 with a half day a month. It grew and improved with the help of a UCH quality improvement grant<\/a> later that year. By November 2016, the once-a-week clinic had become the basis for what Kluger believes to be the country\u2019s 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\u2019s disease patients and their families land on their feet.<\/p>\n

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\u2019s 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.<\/p>\n

\u201cEvery patient needs palliative care, but not every patient needs to see me and our team-based clinic,\u201d Kluger said.<\/p>\n

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.<\/p>\n

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\u2019s such a new field that, despite rich anecdotal evidence of its positive impacts, there\u2019s less in the way of concrete data that could factor into decisions to add neuro-palliative care to hospitals far and wide.<\/p>\n

Among the patients serving on the advisory board for that trial are Malenna Sumrall and Kirk Hall.<\/p>\n

\u201cThere\u2019s nothing I know of out there that has more potential to improve the quality of life of people with Parkinson\u2019s and their caregivers than palliative care,\u201d Hall said.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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\u2019s disease had forced him to stop doing what he loved […]<\/p>\n","protected":false},"author":23,"featured_media":11364,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[5],"tags":[185,1939,1338,1337,1938,184,750],"class_list":["post-11356","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-innovative-care","tag-alzheimers-care","tag-movement-disorders","tag-ms","tag-multiple-sclerosis","tag-neuro-palliative-care","tag-neurology","tag-parkinsons-disease"],"acf":[],"yoast_head":"\nPalliative care give peace 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