On June 8th, PMD Alliance presented a webinar called “Neuropalliative and Supportive Care.”
Palliative care is often associated with hospice care and terminal illnesses such as cancer. There is a growing expansion of the palliative care model into neurological diseases to support a range of health-related quality of life concerns. This includes the management of medical, psychiatric, psychosocial and spiritual well-being.
This webinar features Benzi Kluger, MD, MS, University of Rochester Medical Center.
A recording of this webinar can be accessed on PMD Alliance’s YouTube Channel here.
“Neuropalliative and Supportive Care”
Webinar by Parkinson & Movement Disorder Alliance
June 8, 2020
Notes by Adrian Quintero, Stanford Parkinson’s Community Outreach
Dr. Benzi Kluger started off studying to be a psychiatrist. He went into neurology because he was interested in how the brain works. He focused on behavioral neurology, which is concerned with cognition and memory.
Dr. Kluger became interested in fatigue, which came partly from his experiences in Kung Fu class where he realized a lot of fatigue came from the brain, not the body. His interest in fatigue grew into working with Parkinson’s patients with fatigue and cognitive difficulties.
There were many questions that he faced when working with the PD community. Such questions were:
How do you keep hope in the face of something that is not curable?
How do you best support caregivers?
How do you talk about death and dying?
These questions lead him down a path that includes his own spiritual journey (he studied Zen Buddhism) and into the world of palliative care.
Dr. Kluger’s Journey
Dr. Kluger had a patient with MSA, and the patient’s husband came to see him. The patient was depressed, as Dr. Kluger learned about in medical school. But he believed she had a good reason to feel sad and hopeless. At the same time, Dr. Kluger had other patients dying of their illnesses, and he didn’t know what to say to them; he felt hopeless too.
Dr. Kluger even started wondering if he went into the right field. What he could offer patients didn’t seem to help. He knew a little about Buddhism, and knew it took suffering seriously. He was friends with a monk who volunteered with hospice. He wondered how his friend could do that, and his friend said he just had to be present and open.
Dr. Kluger found the more he was open to his own suffering and mortality, the more he was able to talk with other people about it. He could ask harder questions, like “are you afraid of dying? what’s the hardest part of it?” He felt it opened up new ways to see the person in front of him, as well as seeing himself. Dr. Kluger felt he could show up as himself, with his past knowledge, history, etc.; that he wasn’t only showing up as a doctor.
Dr. Kluger describes the goal of palliative care as to take care of person in front of you. This includes all aspects of the person: spiritual, emotional, physical, and social. Palliative care has become better integrated into cancer care. All cancer care centers have palliative care, which may include a summer camp for kids, writing groups, and so forth. Dr. Kluger says even at the best PD center, you don’t see that same kind of approach. Nor for diseases such as Alzheimer’s and ALS. He wishes to help raise the standard of care for all people with these illnesses, as well as their families.
Dr. Kluger also says clinicians aren’t taught the tools to address suffering in the way they should. Parkinson’s is an illness very different than cancer, and the needs are very different than cancer. We need more research, clinical programs, education, and advocacy for palliative care for people with PD.
Advocacy for Palliative Care
There is a lot of pushback on palliative care from insurance companies. There needs to be a change in the standards and expectations as well as the physicians. They still have old-fashioned notions about palliative care and hospice. There needs to be more education.
Doctors can fill out information for advanced directives, and other related paperwork. You may need to ask about that, and they may need to learn more about it. You can ask for a palliative care referral.
Doctors are afraid if they bring up palliative care or advanced directives, patients will feel the doctors have given up hope. In fact, it doesn’t cause patients to feel hopeless, but rather helps them feel more seen.
Some studies have shown that people with PD have palliative care needs (such as spiritual and grief support) at the same level as people with cancer. Dr. Kluger believes doctors need to address palliative care to optimize their patients’ quality of life.Dr. Kluger and his team did a controlled trial with PD patients following the standard of care for outpatient palliative support. He and his team proposed that by having an organized team, patients would have better quality of life, and care partners would do better too. Results showed favorable for palliative care, including better quality of life, less anxiety, less burden for caregivers, better spiritual well being, better pain management, and more. Dr. Kluger strongly believes palliative care is a good idea for people, and the question is how to do more of it.
Currently Dr. Kluger is involved with an NIH study training neurologists in the community on how to provide palliative care, using virtual house calls to provide social workers, chaplains and other support for patients. At this point they are almost done with the study. So far patients and doctors like the study. COVID has accelerated telemedicine, which was the direction they were going in anyway.
How do we develop models of care that allow the highest person-centered care possible?
Questions about Palliative Care
Palliative care is usually associated with end of life. This is one of the biggest barriers for patients, but even more so for doctors. Dr. Kluger says we need to break this association. The time of diagnosis is a time when there are a lot of palliative needs. People are experiencing confusion, grief, and need help with planning and making changes in life. We should think about palliative care as something that is proactive. Our current system is such that we don’t do anything and last minute we try to do everything. We can’t “unburnout” a caregiver who has reached burnout, or go back and allow someone to spend their last months at home instead of a hospital.
Dr. Kluger sees there is a lot of power in patients being advocates. When someone is in the hospital, try to change systems to make them systematic. We need checklists. So we don’t miss things.
At what point can someone be on palliative care?
We need to get outside the mindset in medicine that things are a one size fits all.Palliative care is an approach to meeting the needs of the person in front of us. It will look different depending on where the person is in their journey. Palliative care can be helpful at every point of journey. Dr. Kluger stresses needing a palliative care approach, not a palliative care team at every appointment, or a clinic that everyone needs to go to.
Palliative care has been so connected with hospice and end of life, and people think of it as a latch ditched effort. It should instead be included in healthcare training to be a more holistic approach. An approach that doesn’t just focus on the disease, but the mental, spiritual, and other components as well. Dr. Kluger believes this approach should be revisited from different points of diagnosis to visits throughout. It may become more intense at different times when non-motor issues come up or there is a crisis. As things progress, hospice is a very different role, last six months or year of life.
Fatigue was one of Dr. Kluger’s earliest interests. He was part of PD Foundation’s international working group that came up with a definition of PD related fatigue. Fatigue often falls under invisible symptoms in the world of PD, and is very misunderstood.
Fatigue is not depression; it is not a sleep problem or being lazy. It’s more like you have a bad flu – you don’t have the energy to do the things you need to do. Fatigue can interfere with doing day-to-day things, and can make it hard to engage in exercise.Fatigue is the number one symptom that leads to disability claims, so it’s important for it to be on the map.
Common causes of fatigue to investigate first include: Medications (including blood pressure meds), dehydration, low blood pressure, vitamin deficiencies, low hormones, and sleep apnea.
To have PD related fatigue, it has to be so severe it interferes with day-to-day activities.
And it’s different than apathy. The person has the motivation but not energy to do the things they need to do. It is important to distinguish fatigue from sleepiness, depression or apathy, as these have different treatments.
Dr. Kluger says some people experience a mental fatigue and for some a medication like Ritalin can help quite a bit. Some people find that power naps can be very helpful. Dr. Kluger recommends the naps be no more than 30-60 minutes.
Some patients say a small snack can help. Sometimes doing activities that are meaningful can help push through fatigue. Everyone who experiences fatigue is not the same. For some people exercise helps, and for some it hurts. Fatigue still has a lot of stigma around it. Dr. Kluger says to reinforce with doctors that fatigue is a serious problem that needs better tools to treat it. There have been studies showing that acupuncture can be helpful, as well as mindfulness, and strength training versus other types of exercises. Currently there are not enough studies for anyone to have a complete tool set.
The role of Joy
Dr. Kluger says it’s important to look for opportunities for joy, not just sources of suffering.
This might mean making modifications to be able to keep traveling or adapting an activity that you’ve always enjoyed. He encourages patients to listen to more of their favorite music, hold hands, tell stories, and eat favorite foods. With the presence of COVID, people are really recognizing the importance of joy in their lives. Dr. Kluger says it can be like a “secret weapon” when we have an incurable illness.
Dr. Kluger likes to ask patients what is on their bucket list, as a way to prioritize the care being provided. If you have a progressive disease, there is no better time than the present. Maybe not all things are possible to do, but maybe many can be modified. Suffering and joy can co exist together, and joy can make suffering more bearable.
Dr. Kluger poses some questions to his patients, as well as the caregivers involved:
- How do you want to grow through this illness?
- Are there ways to grow, find meaning, and find joy along this journey?
- Are there ways to find grace, and grow spiritually?
Dr. Kluger thinks the experience of caregiving, although difficult, can be empowering. He acknowledges that caregivers certainly didn’t sign up for this; it wasn’t part of the plan. Still, there are opportunities for growth.
He suggests caregivers reach out for help. “It’s not a sprint but a marathon.” If you burnout, everything will fall apart. Make time for your own self-care. This could be a few hours a week, or taking a vacation, and finding ways to recharge. Nobody expects perfection.
One source of joy is people coming out of woodwork wanting to help. In the US especially we are all so independent. He believes when caregivers ask that people want to help. Finding a practice of acceptance and being able to accept help can be as big a gift as giving help.
COVID “silver linings”
This pandemic has opened our eyes to what is possible. Telemedicine has been possible, but there were things in the way that are now being moved forward due to the virus. Also, it is prompting clinicians to provide care in creative new ways we haven’t seen before.
Palliative care has gotten a huge boost through COVID. Palliative care physicians have been essential. ICU doctors have needed help, and palliative care has been helping them and the families of patients, who couldn’t be at the hospital with their loved one.
Dr. Kluger gives a nod to a quote that he feels is important right now, “never waste a crisis.”
Advanced care planning resources