Palliative Care is an approach to treating serious and chronic illnesses through a holistic, team-based approach. Neuro-palliative Care is an extension of this discipline that deals specifically with neurological diseases like multiple sclerosis. We recently sat down with Dr. Christina L. Vaughan, MD, MHS, Chief of Neuro-Palliative Care at CU Hospital.
InforMS: Could you please describe Palliative Care and the Neuro-Palliative Care Clinic?
Dr. Vaughan: Palliative care is a medical specialty and an approach to care where we focus on the whole person and all forms of stress and suffering that they are going through. We try to support the patient and their close network – care partners and family members. Neuro-palliative care, in our clinic specifically, is meant to focus on a population of patients with a chronic life-limiting neurologic disease.
Palliative care is a very team-based approach – with a physician, a nurse, an advanced practice provider, a social worker, chaplain, and sometimes a psychologist. Our role is to try and identify people who could benefit from this team approach, and come alongside the neurologist who is treating their main illness. It might be a consultation and other times we stagger visits with the MS team.
Patients with progressive disease are often a good fit for the clinic, since many patients have a high level of increasing needs. We also see patients with very complex symptoms that aren’t responding to the first couple rounds of intervention. These are people who have pain, fatigue, depression or other complex symptoms that need attention.
InforMS: Is neuro-palliative care common?
Dr. Vaughan: It is an area that’s growing exponentially – there’s a lot of interest, and it just makes sense. Neuro-palliative care clinics on the national level are rare, but there are more on the horizon.
Palliative care grew out of the cancer community, which also makes sense but when you expand it to think about neurological diseases, these are really hard illnesses to live with. There is a lot of complexity for our patients.
InforMS: In your clinic, how do you assess different types of pain that people are experiencing?
Dr. Vaughan: The palliative care approach really comes into play in the arena of pain. There is a concept called “Total Pain.” When people can complain of pain, it is rarely ever just physical pain – it can also be emotional, spiritual, and existential. With a palliative care approach, we are trying to get at all of these different facets of suffering. We bring in our different disciplines – our spiritual care counselor, our social worker, our nurse, and a physician – to help patients address all of the contributors to their pain.
We want to help embolden the patients to know how to explain their pain to clinicians. And, it is also up to us as clinicians to know how to ask the right questions. There are so many questions you can ask about pain:
What is the character of your pain — is it dull, achy, stabbing, or burning? On a scale of zero to 10 with 10 being the worst pain of your life, where does your pain fall right now? What number would be acceptable to you? What is our target? Obviously zero would be ideal, but outside of zero, what’s our goal?
We are very specific and objective about pain with our assessment. But we also ask other eye-opening questions like: What does your pain mean to you? How do you interrupt this pain? How do you make sense of this pain?
Those are the questions we ask that might differ from a typical clinician. It’s remarkable the responses you might get.
InforMS: How do patients respond to those questions?
Dr. Vaughan: The answers are wide-ranging. Some people might look at you funny — why are you asking me this and what are you talking about?
Other people might have an existential response such as, “I’m feeling punished by God. Or, “this pain means that my disease is getting worse and I don’t want to admit to that, so I’m not going to be so forthcoming about this pain.”
There are many unexpected ways in which people can interpret their pain, and these conversations often help us identify additional areas of suffering. We are able to bring in our team members, such as our chaplain, social worker, or psychologist to try to help patients with those issues.
With these questions, we are assessing how they interpret their pain, what it means to them, how it’s impacting their daily life, how it’s affecting people around them, and how it plays out in their life.
Then, we get into the specifics of what number is your pain, what’s the character of the pain, what makes it better, what makes it worse, what have you tried, how has that helped?
If we are really going to do a good job in dealing with pain, we are going spend a lot of time exploring it, which in and of itself sounds painful, but it’s really not meant to be. You learn so many things when you ask the right questions, and I think palliative care has taught me – and continues to teach me how to ask new and better questions.
In neurology, we walk around with our tuning fork and our hammer, and these are our tools. But in palliative care, our tools are questions. Asking people to let us in and really understand their pain with them is really helpful in the treatment. Plus it helps them feel heard, and that in and of itself is therapeutic.
InforMS: Once you’ve conducted this holistic assessment of the patient’s pain, what strategies do you use to help treat or manage their pain?
Dr. Vaughan: The complexity and variation of pain leads to a necessarily multi-faceted and personalized approach for treatment and management.
The character of the pain is different, the cause of the pain is different, and the treatment is different; because there are medications and strategies that are particularly effective for nerve pain(neuropathic pain) and not effective for musculoskeletal or nociceptive pain and vice versa.
Meditation and mindfulness techniques can be very helpful for patients. Our spiritual care counselor discusses these techniques and practices with patients. I also refer some patients to integrative medicine for acupuncture. Massage can also be very helpful for people. Strategies are very personalized for the individual. We encourage an individualized exercise program for patients since exercise is a helpful strategy.
Depending on the type of pain, we may look at medication options for patients. Medications can range from anti-inflammatory agents to anti-depressants to, as a last resort, opioids. When we evaluate medications, we want to make sure that the benefits outweigh the risks. There is so much fear around opioids because we have a terrible epidemic of opioid use and addiction. At the same time, in my opinion, there is an emerging epidemic of under-treatment of pain. Again, I want to emphasize that medications certainly are not the only solution to pain management and there are various other modalities.
But when you’re talking about medications, there is a staircase approach — starting with things like Tylenol or Ibuprofen and then careful consideration and evaluation on escalating up. Sometimes botulinum toxin (“Botox”) can be helpful for painful spasms or spasticity.
We also look at practical daily strategies for navigating life while managing pain. With unpredictable pain, you never know when it’s going to flare up, and we know that that pain may cause people to be isolated and stay at home and not want to go out. This isolation can contribute to increased fatigue and depression. Our treatment approach includes working with them to develop practical solutions, such as developing a contingency plan for if their pain flares when they are outside of their home.
For more information on the Neuro-Palliative Care Clinic at UCHealth, please ask your provider or call Alan Hall at 720-848-8761 to schedule an appointment, or visit www.neuropalliative.org.