Dr. Benzi Kluger, MD, MS is a neurologist at the University of Colorado Hospital. He specializes in movement disorders, behavioral neurology and in the overlap of these two fields. We recently sat down with Dr. Kluger to talk about patient care.
InforMS: What is palliative care?
The goal of palliative care is to relieve suffering. We do this by managing medical symptoms like pain and fatigue, and also by dealing with spiritual wellbeing, psychosocial issues, and financial issues.
There are some myths about palliative care. One myth is that it is just end of life care, but it’s not. A lot of people have high palliative care needs at the time of a diagnosis. And another myth is that you have to choose between aggressive care and palliative care. It is totally appropriate to receive palliative care and the most state-of-the-art MS therapy. You don’t have to make a choice between the two. Palliative care is not just for patients with cancer. It’s appropriate for people with all kinds of diseases. People have been talking about palliative care for neurology for about 20 years, but it’s really started to get some legs over the last few years.
InforMS: What led you to develop a palliative care neurology program?
I started the palliative care program after I finished my fellowship in behavioral neurology. Behavioral neurology deals with cognition and memory problems, which affect people with MS, as well as movement disorders, which include tremor and Parkinson’s disease.
Once I finished my fellowship, a pretty standard patient visit for me would be something like this: I would see someone who thought they had Parkinson’s disease and I’d say, “No, you don’t have Parkinson’s disease, you have a different disease that’s actually worse, so let’s get you off your medications and, by the way, you shouldn’t be driving. Let’s get you back to your primary care doctor who won’t know what to do and that’s the state of our care.”
Once I finished my fellowship, a pretty standard patient visit for me would be something like this: I would see someone who thought they had Parkinson’s disease and I’d say, “No, you don’t have Parkinson’s disease, you have a different disease that’s actually worse, so let’s get you off your medications and, by the way, you shouldn’t be driving. Let’s get you back to your primary care doctor who won’t know what to do and that’s the state of our care.”
Unfortunately, that’s all we had to offer. It was unsatisfying and it bothered me for a lot of reasons. It bothered me that we really weren’t serving these people who had pretty high needs. And it bothered me that I wasn’t trained to deal with the psychological issues that people were dealing with. We get trained in psychiatric issues—if someone has depression we can start them on medication. But if someone has grief or they’re upset or they’re angry or frustrated, we don’t really have any tools to help.
And then I had a patient with Huntington’s disease who really taught me about the role of spiritual care. She was 19 years old and her sister died of Huntington’s disease earlier that year. Her dad had also died. She was having problems sleeping. I asked her why and it turned out she was afraid she was going to die in her sleep. This wasn’t something I was going to fix by giving her a sleeping pill. In fact, she wasn’t taking her sleeping pills because she was afraid that was going to make it more likely she was going to die in her sleep. Just having that conversation with her and talking about it seemed to help. I knew that if we’re really going to take care of this patient we’re going to need a team. She needed a social worker and a chaplain and a nurse and a psychologist. And that’s what the program born out of — the needs of these patients and the fact that we weren’t meeting those needs.
InforMS: What makes palliative care unique?
We have a care model that is like a three-legged stool. One of those legs is community. So the Rocky Mountain MS Center serves as that community leg for a lot patients with MS and related neurological diseases. It’s a team effort — accessing educational resources and connecting with support services. The second leg is the patient’s primary care doctor and the neurologist. And then the third leg is our palliative program, which is providing secondary and tertiary palliative care.
We are trying to help people who have more complex symptom management issues. Neurologists are very skilled with MS and with disease-modifying therapies, but may not have specific training in pain management or fatigue or depression or constipation or other complex symptoms common to MS. These are things that the PCP doesn’t want to treat because they think it’s MS and the neurologist doesn’t want to treat it because it’s a primary care issue, so the patient is stuck in the middle.
Most palliative care clinics don’t use the term palliative care. It’s such a charged word. So we call ourselves a supportive and palliative care clinic. One of my colleagues in Alberta calls her clinic complex symptom management. I like supportive care because we don’t just do symptom management. We also provide help for the caregivers and provide help on issues like grief, anger, communication and spiritual well being. So, we do more than just symptom management.
InforMS: A lot of times people think of palliative care as it relates to treating terminal illnesses. What does it look like for a chronic illness like MS?
There is a huge gap for people with progressive neurological illnesses. The neurologist takes care of this medical piece and the primary care provider takes care of that medical piece. Then everything else, from spiritual well being, to planning for the future, to caregiver support, falls on the caregiver and they’re not particularly trained to take that on. So what ends up happening is those aspects of the disease don’t get particularly well cared for.
The neurological palliative care program is a model that aims to fill that gap. It can work in a few different ways. First, when we get referrals, we give people the option of being referred for a single issue, for example cognitive impairment, where they want help to decide about guardianship and their capacity to make decisions. Second, we can co-manage a patient with the neurologist. This might be a good fit for a person who is getting disease-modifying therapies because I’m not an expert in that at all. When the person has other issues—pain, or significant caregiver distress, or they need more home health services—we can help fill that gap and manage their care. The third approach is that we might become their medical home, so our team might become their doctors and the team that they would go to when they have problems or questions. We have the capacity to do that.
InforMS: What type of patient is well suited for palliative care?
Patients with very progressive disease are a good fit for a referral, since many patients have a high level of needs. We also see patients with really complex symptoms that aren’t responding to the first couple of rounds of intervention. These are people who have pain, fatigue, depression or other complex symptoms that need attention.
InforMS: What does a typical palliative care appointment look like for a patient?
One of the most unique aspects of our palliative care program is that we have the opportunity to take a lot of time with each patient. Our average new patient visit is 2 and half hours. A follow up visit can be anywhere from 90 minutes to 2 hours.
During a typical new patient visit, I may spend an hour with them. Then, they stay in the room, and our social worker comes in, then our chaplain, and then our nurse. We encourage patients to come with their caregiver and any other relevant family.
And then at the end of the visit, we’ll all sit down and assess the needs. For example, we need to get home health care sent out. We’ll order medications for their symptoms. Or the chaplain may have some suggestions for getting them back involved with their church.
InforMS: Let’s talk about managing symptoms. How do you approach MS symptom management differently than a traditional neurologist?
Let’s use fatigue as an example. There are many different layers to fatigue and the place that I usually start is just trying to understand what their fatigue is. Sometimes it’s tiredness; sometimes it’s lack of energy. Does it occur on a particular type of day? Is it when they first wake up? We really want to understand it and make sure it really is fatigue, and not daytime sleepiness or depression or apathy or demoralization or chronic pain. All of those things can overlap, and fatigue can be more than one thing. So we start with the question –what exactly are we dealing with?
So once we get that clarified, the next step may be doing further work-up. In a lot of neurologic patients, sometimes blood pressure changes or dehydration can cause fatigue and it’s not recognized. It might be a simple fix but it just takes a little bit more time to figure out what’s really going on.
And then we can evaluate other things such as vitamin D, testosterone, B 12. And then there are some medications that can be helpful, such as Ritalin and Provigil. Sometimes it might be a matter of working on energy management strategies or giving someone permission to take a nap. Particularly in MS, chronic pain, sleep disorders and depression are significant secondary contributors to fatigue. So sometimes it’s a matter of trying to address these other complex issues.
InforMS: Do you have the capacity to do consultations with people who will not continue to receive care from you? Do you provide consultations to people living outside of Colorado?
Yes, that’s an option. We can do one-time consultations or we can do co-management. We can help them, get to know them, and then email them a list of things they can work on with their local physicians.
InforMS: How do people connect with your program?
Providers outside of University of Colorado Hospital can fax a written referral along with the patient’s demographics, insurance information and pertinent medical records to 720-848-2106. Once records are received, patients can contact the clinic at 720-848-2080 to schedule an appointment. UCH providers can place an internal referral to palliative care program. Providers and patients can contact the clinic at 720-848-2080 to schedule an appointment.