Editor’s Note: These are brief notes from Elizabeth Wong about what she got out of the presentation and what she learned from the Q&A.
Living with Progressive Supranuclear Palsy (PSP) or Corticobasal Degeneration (CBD) presents unique challenges. While these conditions impact daily life, focusing on quality of life remains paramount. Things that bring joy and meaning – such as being with loved ones, enjoying food, staying active, engaging in community, caring for others, or finding purpose in work – are universal desires that illness can get in the way of.
Dr. Jocelyn Jiao, a specialist in both Movement Disorders and Neuro-Palliative Care, shed light on how palliative care can help individuals navigate these challenges and live their best possible lives.
Palliative care is a specialized approach focused on improving quality of life for individuals facing serious illnesses and their families. Palliative care is a person-centered, holistic approach delivered by an interdisciplinary team, focusing on the whole individual—mind, body, spirit—not just the disease. It aims to relieve symptoms and stress associated with serious illness, acting as a supportive layer alongside other medical treatments. Palliative care is based on the patient's needs, making it appropriate at any age and any stage of illness, regardless of prognosis, even while pursuing curative treatments.
Palliative care is particularly helpful if you're experiencing:
- Difficult Symptoms: Both physical (pain, breathing issues, muscle spasms, excess saliva) and psychological (irritability, anxiety, depression, hallucinations, fatigue, low appetite, coping difficulties).
- Complex Medical Decisions: Palliative care teams can assist with advance care planning, weighing treatment options, and prioritizing care.
I was excited to learn that engaging palliative care had measurable benefits. A landmark 2010 study (Temel et al., New England Journal of Medicine) found that advanced lung cancer patients receiving early outpatient palliative care lived, on average, three months longer than those who didn't. Across various studies, palliative care consistently shows benefits like:
- Improved quality of life
- Better symptom control
- Enhanced spiritual well-being
- Reduced psychological distress
- Higher patient and family satisfaction
- Fewer hospitalizations and shorter stays
- Reduced caregiver burden
Dr. Jiao clarified that palliative care is NOT the same as hospice, although they tend to be confused or lumped together. Palliative care is a broad field focused on quality of life at any stage of a serious illness, alongside other treatments. Hospice is a specific type of care, often considered a part of the palliative spectrum. Hospice is focused on comfort and quality of life when the focus shifts away from curative treatment, typically for those with a prognosis of six months or less (as per Medicare guidelines).
Dr. Jiao clarified that you can receive palliative care for years without ever needing or choosing hospice. Palliative care can be accessed like any other speciality referral, such as by asking your primary care doctor, neurologist or hospital team for a referral. Palliative care is covered by Medicare and most insurances, just like seeing any other medical specialist. You can visit GetPalliativeCare.org and search by zip code to find palliative programs near you.
Take-Home Message
As Dr. Jiao emphasized, if you or a loved one is facing the difficult road of PSP or CBD, palliative care offers a partnership. It's there to help manage symptoms, navigate tough decisions, and ultimately, support you in living the best quality of life possible.
Now onto the notes,
Elizabeth
“Living Your Best Life”
Presented during Progressive Supranuclear Palsy/Corticobasal Degeneration Symposium
Speaker: Jocelyn Jiao, MD, Movement Disorder Specialist, neuro-palliative care specialist
Symposium Host: Brain Support Network and Stanford Movement Disorder Clinic
Symposium Date: June 29, 2024
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Things that give us meaning to life:
- Being surrounded by friends and family.
- Enjoying good food.
- Being active outdoors (hiking, sports).
- Spending time with children and parents.
- Participating in church or faith communities.
- Caring for loved ones and pets.
- Contributing to jobs or work.
How Illness Can Affect Quality of Life:
- Illness can create challenges that make it difficult to access joy, meaning, or purpose.
- Challenges can be physical, psychological, emotional, practical, financial, or spiritual.
Palliative Care:
An approach and medical specialty that focuses on making life as good as it can be while living with a difficult illness.
Topics to be Covered:
- What is palliative care?
- How is palliative care different from other parts of medicine?
- When and how can someone benefit from palliative care?
- How does palliative care help people live their best life?
- What is the difference between palliative care and hospice?
How Palliative Care Differs From Other Medical Teams:
- Centers attention upon the person.
- Emphasizes the individuality of every person.
- Takes a holistic approach (mind, body, spirit, and practical aspects of life).
- Works together as a team (doctors, nurses, social workers, and chaplains).
Commonly Accepted Definition of Palliative Care:
- Specialized health care for people living with a serious illness.
- Focused on providing relief from the symptoms and stress of the illness.
- Goal is to improve quality of life for both the patient and the family.
- Provided by a specially trained team.
- Works together with the patient's other doctors to provide an essential layer of support.
- Based on the needs of the patient, not on the prognosis.
- Appropriate at any age and at any point in a serious illness.
- Can be delivered alongside curative treatment.
Serious Illnesses Suitable for Palliative Care:
- Any illness that has a reasonable possibility of being life-limiting over a course of years.
- Examples: Cancer, heart failure, Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS), Multiple System Atrophy (MSA), Parkinson's, and ALS.
Services Provided by Palliative Care:
- Symptom management (physical and psychological).
- Common symptoms: Pain, difficulty breathing, muscle spasms, increased saliva, irritability, impulsivity, anxiety, depression, hallucinations, coping with illness, fatigue, and low appetite.
- Holistic approach to symptom management: Medicines, psychological interventions, integrative techniques (acupuncture and mindfulness), and addressing spiritual and existential concerns.
- Example: Person with PSP reporting that their sleeping is getting worse. Difficulty sleeping could be related to brain sending stay awake signals to their body; it could be related to their worrying about recent weight loss; it be may related to side effect of their antidepressant; it could be related to not being able to find a comfortable position due to back pain; it could be related to being sleepy during the day that they start to feel socially isolated and they stay up at night wondering if their disease or what they are experience is punishment from God. When considering a person’s health, consider their total health, what is happening in their body and also address how the symptom is affecting their life.
- Medical decision-making.
- Advanced Health Care planning.
- Completing documents (Advanced directives and POLST forms).
- Weighing treatment options (feeding tube, transition from home to a facility).
- Helping families prioritize care.
Eligibility for Palliative Care:
- Available at any age and at any stage of illness.
- There is no particular age, diagnosis, prognosis, or treatment plan that makes someone eligible or ineligible.
Benefits of Palliative Care:
- Landmark study in 2010 published in the New England Journal of Medicine (Temel 2010) shows that patients with newly diagnosed advanced lung cancer had a survival benefit when they received consistent monthly outpatient palliative care visits. Patients who got palliative care lived an average of three months longer than those who did not receive palliative care.
- Improved quality of life.
- Symptom control.
- Spiritual well-being.
- Psychological symptoms improved.
- Satisfaction.
- Fewer hospitalizations.
- Fewer days in the hospital.
- Less burden on caregivers.
When to Ask for a Palliative Care Referral:
- If you are living with a serious illness such as PSP, CBS or CBD.
- If you are having difficulty with symptoms, decisions, or coping.
- If multiple aspects of life are becoming difficult.
Cost and Coverage:
- Palliative care is covered by insurance like any other medical specialist.
- Access to palliative care has been improving in California.
How to Access Palliative Care:
- Ask for a referral from a primary care provider or a specialist.
- Inpatient or hospital-based teams may also be able to make a referral.
Palliative Care vs. Hospice:
- Palliative care and hospice are not the same.
- Palliative care is a large and broad field. It is focused on symptom management and it helps make sure care plans focus on what matters most to patients. Palliative care is available to people at any age and any stage of disease and can be involved in addition to curative treatment.
- Hospice is only a part of the type of care palliative care providers train in.
Hospice Care:
- A philosophy of care focused on comfort and quality of life.
- A health insurance benefit.
- A set of services that can be provided in any setting.
- Focuses on supporting patients for whom comfort and quality of life is the highest priority.
- Aims to support people in being in the place that's most comfortable for them.
- Medicare provides the guideline that patients should have a six-month or less estimated prognosis to be eligible to receive hospice benefits.
- Hospice as a set of services is very comprehensive.
- Hospice agencies are composed of an interdisciplinary team.
- Hospice services can be delivered and received in the home, in nursing homes, and in specialized hospice homes and houses.
Palliative Care Resources in the Bay Area:
- There are many great palliative care programs in the Bay Area.
- To find a palliative care program near you, visit https://getpalliativecare.org/, search your ZIP code, or ask a neurologist for a referral.
Take-Home Message:
- If you're facing a difficult road, palliative care is here to partner with you to improve your quality of life and to navigate difficult decisions.
Stanford Neuropalliative Clinic:
- Headed by Dr. Joselyn Jiao.
- Virtual and in-person visits are available to all patients who are connected to the Stanford Healthcare System.
- Referrals can be placed by any provider.
- Located at 213 Quarry Road (Stanford Neuroscience Referral Center)
Questions and Answers:
Q: Is palliative care available in HMOs like Kaiser?
A: Yes, Kaiser has a comprehensive palliative care team.
Q: Are there any Palliative care resources specific to PSP or CBD?
A: That is an area of growing interest and research. I am a member of the International Neuropalliative Care Society and one of our main missions which is to create more community outreach to give more palliative care resources to people all over the world
Q: Can you talk about pain management in PSP or CBD, is that part of palliative care?
A: There is a lot of overlap between symptom management. Palliative care specialists, neurologists, and cognitive behavioral specialists can help through a team approach.
Q: Can Palliative care be provided remotely via telehealth?
A: Yes, many programs offer telehealth visits. Every program is different, it depends on the provider and program.
Q: Is Palliative care covered by Medicare or other insurances?
A: Yes. Same as you would get referred to neurologist or cardiologist, you can get referral to see palliative care specialist
Q: Do you discuss feeding tube options?
A: Yes, it is a common topic in palliative care. The risk and benefits of feeding tubes are best discussed way ahead of when someone needs one because it is a complicated discussion and it's a complex intervention that has an impact on multiple parts of life. The decision process is different for every individual.
Q: Is palliative care available to someone in hospice?
A: For most, palliative care teams and hospice teams aim to provide a very similar philosophy of care that focuses on symptom management, support for the family, focuses on holistic health and illness, so a lot of efforts are duplicative. Often when someone is engaged in palliative care and we decide to enlist the help of a hospice team, we try our best to make as gentle and as smooth a transition as possible
Q: What about lifestyle changes, such as exercise, socialization?
A: When I meet someone during a clinic, I like to ask “What brings you joy?”,“ What makes your life worthwhile?”, “What gives you strength?”, “What worries do you have?”. Often in that series of questions we talk about creative ventures, exercise and nutrition because all of those things are part of what many people consider to be critical aspects of quality of life. Often the most important work that I do during the day is talk with someone and their family to figure out what are the parts of your life in which we can push the needle and we can introduce more joy, meaning, satisfaction, and purpose.