“Caring for the Whole Person”

Many people associate palliative care with exclusively end-of-life care, but that’s a misconception. In November 2024, the Palo Alto PD Support Group hosted a talk with Stanford’s Dr. Jocelyn Jiao who shed light on the true nature of palliative care and its profound impact on individuals living with Parkinson’s disease. Dr. Jiao is a movement disorder and palliative care specialist. Read our notes from her talk.

Palliative care is a specialized medical field focused on improving the quality of life for anyone with a serious illness, regardless of the stage. Whether you’re newly diagnosed or facing advanced Parkinson’s, palliative care offers support and symptom management.

The core of palliative care is its holistic approach. It addresses the person beyond the disease, considering physical, emotional, and spiritual well-being. A palliative care team, typically comprising doctors, nurses, social workers, and chaplains, provides an extra layer of support for both the individual and their care partners and family. They help navigate treatment options, manage pain and other symptoms, connect you with valuable resources, and address spiritual or existential concerns.

One of the most compelling aspects of Dr. Jiao’s presentation was the reference to a landmark 2010 study published in the New England Journal of Medicine (Temel, 2010, NEJM). This study demonstrated that people with advanced lung cancer who received early palliative care lived longer than those who didn’t. This research highlights that palliative care not only enhances quality of life but can also contribute to increased longevity.

Dr. Jiao explained the difference between palliative care and hospice. While all palliative care specialists are trained in hospice, hospice is a specific subset of palliative care. Palliative care focuses on improving quality of life for anyone with a serious illness, at any stage. Hospice is a philosophy of comfort-focused care, an insurance benefit, and a set of services for individuals with a prognosis of six months or less.

A recording of the webinar is available on the Stanford ADPA YouTube channel

You can find relevant resources on palliative care on the Stanford Parkinson’s website (some of which are PD-specific):

Palliative Care and Hospice

For more information on how palliative care can help someone with Parkinson’s or a care partner with Parkinson’s disease, check out this presentation from APDA Virtual Parkinson’s Conference on February 20, 2025 by Andrew Esch, MD

Here’s a link to 2010 landmark study on palliative care referenced by Dr. Jiao, published in the New England Journal of Medicine

Finally, here are links to other palliative care resources discussed in the webinar:

Now on to my notes,

Elizabeth

Speaker: Jocelyn Jiao, MD, Stanford Movement Disorders Clinic and Stanford Palliative Care

Meeting Host: Palo Alto PD Support Group, Palo Alto, CA (organized by Stanford’s APDA Information & Referral Center)

Meeting Date: November 13, 2024

Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach

When we think about whole personhood or living our best life, most imagine enjoying good food, spending time with family, attending sporting events, participating in spiritual communities, and caring for loved ones. Illness can get in the way of that and it can introduce uncomfortable symptoms, big questions about the future, and affect us emotionally and financially.

Palliative care is an approach to serious illness that can bring back joy and highlight meaning for those affected by Parkinson’s.

Focusing on the Whole Person

Palliative care focuses on the person beyond the disease. While all healthcare providers care about the person, it’s important to emphasize that the person is the absolute focus of our work in palliative care. Palliative care providers obsess over the individual.

How Palliative Care Differs

Palliative care takes a holistic approach to illness. The person and their family are considered at the center of care, but also consider all the ways illness impacts the multiple aspects of life such as physical, mental, spiritual, and practical. When someone first meets with a palliative care team, they will likely see multiple people. This is because the palliative care approach recognizes the multifaceted impact of illness.

Our palliative care team at Stanford includes:

Doctors and nurses who address medical needs and coordinate care.
Social workers who provide emotional support, connect to medical equipment, and connect you with financial resources.
Chaplains who help process spiritual and existential concerns.

What is Palliative Care?

Palliative care is specialized healthcare for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliativecare is provided by a specially trained team. Palliative care specialists work together with a patient’s other doctors to provide an essential layer of support. Palliative care is based on the needs of the patient, not the prognosis. It is appropriate at any age and at any point in a serious illness. It can be delivered alongside curative treatment.

Serious Illnesses

A serious illness can be anything from cancer and heart failure to Parkinson’s disease, dementia, and ALS. It’s more about the individual’s needs than the specific diagnosis.

Symptom Management in Palliative Care

In palliative care, we manage various Parkinson’s disease symptoms: physical ones like pain, constipation, and muscle spasms; psychological symptoms like agitation, anxiety, and depression; and other issues like coping with fatigue, low appetite, and caregiver stress.

A Comprehensive Approach to Symptoms

Our approach to symptoms is comprehensive. For example, if someone has trouble sleeping, we consider medication side effects, anxieties, social isolation, and spiritual distress, not just the physical symptom itself. We might use medication, cognitive behavior therapy, integrative techniques, or spiritual support to address the root causes.

Palliative Care and Decision-Making

Palliative care also helps with medical decision-making. We can assist with advance care planning, weigh the benefits and burdens of treatment options, and support families in deciding on the best care setting or approaches as time grows short. This is truly the heart and soul of palliative care.

Palliative Care: Any Age, Any Stage

It’s crucial to remember that palliative care is appropriate at any age and stage of illness. It can be provided alongside any treatment, from the point of diagnosis onwards. A landmark study in 2010 (Temel, 2010, NEJM) showed that people with advanced lung cancer who received early palliative care lived longer than those who didn’t. Palliative care has also been shown to improve quality of life, symptom control, spiritual well-being, and reduce caregiver burden.

When to Consider Palliative Care

If you’re diagnosed with a serious illness and experiencing challenges in multiple areas of your life, it might be a good time to consider palliative care. It’s covered by insurance like any other medical specialty. There are many kinds of legislative initiatives in California that are hoping to increase access to palliative care by requiring that people with certain diagnoses actually have to be covered by public health insurance.

Accessing Palliative Care

To access palliative care, you can get a referral from a provider such as your primary care provider, a specialist, or your hospital care team.

Palliative Care vs. Hospice

It’s important to distinguish between palliative care and hospice. While all palliative care specialists are trained in hospice care, hospice is only a small part of the broader field of palliative care. Hospice is a philosophy of comfort-focused care, an insurance benefit, and a set of services for individuals with a prognosis of six months or less.

There are some important distinctions between palliative care and hospice. Many well-intentioned healthcare professionals confuse the two. While all palliative care specialists are trained in hospice care, hospice is only a small part of what palliative care offers. Palliative care focuses on quality of life and coping for both the individual and their family, and it’s available at any age and stage of illness.

Hospice, in contrast, is a smaller part of palliative care, but a very important one. Hospice is actually three things: a philosophy of care, an insurance benefit, and a set of services.

As a philosophy, hospice emphasizes comfort-focused care, meaning that medical interventions are aimed at maximizing comfort and quality of life. This care is ideally delivered in the patient’s preferred setting, most often their home.
Hospice is also an insurance benefit covered by most insurance plans, including Medicare, Medicaid, and Medi-Cal. To be eligible, two doctors must certify that the patient has a prognosis of six months or less. Hospice primarily covers treatments that align with its comfort-focused philosophy.
Hospice provides a set of services through an interdisciplinary team, including a doctor, nurse, case manager, social worker, chaplain, volunteer, and home health aide. The hospice nurse plays a central role, making regular visits to the home to manage symptoms. Hospice aims to provide care wherever the patient is most comfortable. It offers a 24-hour phone line for immediate support, takes over medication management for symptom relief, provides medical equipment, and offers various other services.

Resources and Stanford Neuropalliative Clinic

The Bay Area has many excellent palliative care programs. This isn’t an exhaustive list, but it demonstrates the variety of options available, from academic centers like Stanford and UCSF to public hospitals.

Kaiser Marin-Sonoma
Marin General Hospital
Kaiser East Bay
San Francisco Veterans Administration
Sutter San Francisco/California Pacific Medical Center
Kaiser San Francisco
UCSF
Zuckerberg San Francisco General Hospital
Sutter/Palo Alto Medical Foundation (PAMF)
Stanford
Santa Clara Valley Medical Center

For those outside the Bay Area, Get Palliative Care allows you to search for programs by zip code.

Here are some other helpful resources. Our Stanford website provides information about our team and services.

The Stanford Neuropalliative Clinic, which I’ve been developing, aims to provide interdisciplinary palliative care for people with serious neurological diseases, including Parkinson’s. We offer virtual and in-person visits for those connected to the Stanford Health Care system. Referrals can be made by any Stanford provider to Palliative Medicine at the Neuroscience Health Center.

Question-and-Answer
Editor’s Note: Many of these questions are specific to the San Francisco Bay Area!

Question: What are palliative care services in South San Jose, Morgan Hill, Gilroy?

Answer: The map and list of places in the presentation does not go quite that far south, but there’s a Sutter further south that has palliative care. If you have a primary care provider within that area, they can likely refer you to palliative care. Specialists tend to be crowded in more populated and urban areas. The lovely thing about many palliative care teams is that we do a lot of telemedicine to try to make sure that as many people as possible can access the services.

Question: Would someone in Morgan Hill need to be seen in person at Stanford, and then could they do telemedicine from there on?

Answer: There’s no rule. Many people do all their care via telemedicine. For my purposes, because I’m developing the neuropalliative clinic, sometimes there are questions better answered in person. Sometimes, people with Parkinson’s sometimes have difficulty with telemedicine due to soft speech, difficulty with speech, or have difficulty communicating their wishes and prefer to see me in person. Virtual or in-person visits are possible depending on what works for you.

Question: If someone wants to come see you at the neuropalliative clinic, do they have to be a Stanford Health Care patient?

Answer: Yes, currently we’re only available to people connected to the Stanford Health Care system. We’re not able to take outside referrals at this time.

Question: Would they need a physician who can refer them to neuropalliative care?

Answer: Exactly.

Question: To make an appointment at Stanford, do they call palliative medicine or the movement disorder clinic?

Answer: To see me in the palliative medicine clinic with the full team such as with the social worker and chaplain, I’d recommend a referral to palliative medicine. I utilize a palliative approach in my movement clinic as well, but for the big-picture, holistic approach, the palliative medicine clinic is set up to support that. There is another neuropalliative care clinic at UC San Francisco which is further north. That provider is Dr. Kwame Adjepong.

Question: Can you talk about whether there is such a thing as getting kicked off of palliative care and how one could get kicked off of hospice?

Answer: To clarify, palliative care does not require a six-month or less prognosis. I can see people at any age and any stage of illness, from newly diagnosed to those nearing the end of life. Insurance doesn’t usually create barriers for palliative care or create any criteria for anyone to qualify for palliative care. There is some nuance to that statement in that many palliative care teams were born out of the cancer world so many palliative care specialists are more accustomed and comfortable with addressing the needs of people living with cancer than other conditions. This is something that is rapidly changing in our field and certainly I hope to be part of the front edge of that field change and that paradigm shift. Some people have told me that they did try to access palliative care at a different institution and they told that the particular palliative care team does not actually work with people living with a neurological disease as they only see patients with cancer so that is one instance in which I can imagine someone hearing that they were not able to access palliative care.

Hospice, on the other hand, has specific eligibility guidelines. The eligibility criteria is a hot topic of controversy in the hospice and palliative world. I will often hear from hospices that they are not entirely sure if a person would qualify because the hospice might be using criteria that don’t really apply to Parkinson’s disease, however I will say that as a neurologist and a palliative care specialist, that often means that I will try to reach out to a different hospice agency and also reach out to hospice medical directors to have a conversation if I think someone does qualify for hospice and to advocate for them to to receive services. If you feel your loved one qualifies for hospice and their doctor disagrees, you can seek a second opinion or contact a different hospice agency directly, as many accept self-referrals.

Hospice has a recertification process every 60 days to ensure patients still meet the criteria, the agency has to justify to Medicare that you still have a shortened prognosis. Sometimes, hospice agencies, unfortunately, if they are not able to justify that someone is reaching the end of life, for example if a person gets better, the hospice agency would “graduate” people.

I’ve walked families through every side of that transition, back and forth. It can be a time of a lot of upheaval. For the person asking the question, the caregiver, you’re doing the right thing by advocating for your loved one. It is an unfortunate reality that sometimes people are not able to keep the services if they start to get better.

Question: Similarly, is there any circumstance under which somebody could get kicked off of palliative care? Is there any care or treatment that someone would receive that would disqualify them from palliative care?

Answer: Regarding palliative care, there’s no specific treatment or intervention that would disqualify someone. Our team is there to meet the needs of the patient and families. However, if a patient’s needs are met and they feel they no longer require palliative care services, that’s all good news as it means that we’ve accomplished something and that your quality of life is in a different place than it was when we first met. I never want your palliative care visit to be something you feel you are obligated to continue to see or be burdensome because we acknowledge that you may have many other doctors and health related appointments. I always say that if you ever graduate from palliative care it’ll be because you told me that you don’t have the need for the services at the present time.

Question: A caregiver of someone with advanced Parkinson’s, who was bedridden and unable to communicate, was concerned about their loved one’s weight loss. Their Kaiser primary care physician wouldn’t advocate for hospice. Any suggestions?

Answer: In the Kaiser system, you can use a non-Kaiser hospice. Many hospice agencies accept self-referrals, so that’s an option if you believe your loved one would benefit. You could also try talking to other doctors within Kaiser, any doctor can refer to hospice or palliative care or having another conversation with your primary care physician to express your concerns and understand their perspective. You could say “these are the things I’m noticing and that I’m worried about. I’m worried that time is growing shorter, and I want to make sure my loved one has enough support. What can you share with me? Can we set up a time to talk?”

It might be that the primary care doctor has certain concerns about the kind of treatment you might be getting that might not be paid for by hospice. They might have some other reason for hoping to continue with care outside of hospice. So it would be good to set up some time to hash it out.

Question: Getting back to palliative care, does insurance cover services like social workers and chaplains?

Answer: At Stanford, the interdisciplinary team members don’t bill separately for their visits. Only I, as the medical provider, bill for the initial consultation. Any one-on-one time they spend with the patient and family is not billed.

Question: Comfort-focused care sounds good for those of us who’ve had PD for a while and it affects our quality of life, even though we probably have many more years to live. Can you speak to that?

Answer: It’s unfortunate that the US healthcare system often has this six-month prognosis requirement for hospice. In other countries, like Canada, there’s no such requirement. Even if you don’t qualify for hospice services, you can still prioritize comfort-focused care and making sure your own goals and values are driving the care that you receive and discussing with your doctors to ensure the treatment plan aligns with your wishes.

Question: Another common topic in our caregiver groups is about infections like UTIs and pneumonia, which are more frequent and dangerous in advanced Parkinson’s. Should these always be treated with antibiotics? What kinds of things do you discuss with families in relation to infections and treating infections?

Answer: Infections are a big topic in my clinic. Recurrent infections can cause significant stress and anxiety. It’s important to have open conversations with families about the end-of-life process in Parkinson’s, what that looks like and what to expect. One thing I explore with people, with their permission, are these clinical scenarios that often tell me, as a specialist, that time is growing shorter. Knowing that time is growing shorter no matter what we do, no matter how aggressively we treat them, what’s most important?

If it comes down to the question of whether to treat with antibiotics, I want to clarify this because I know it’s a common misconception: hospice will use antibiotics. They will test for urinary tract infections; they will even treat them with oral antibiotics.

It’s more about thinking of the hospital-based interventions people might need when they get a serious infection, because those really fall outside of that comfort-focused philosophy. Hospice is less likely to do so.

From my perspective, I often have a pretty low threshold to say, “If treating with antibiotics helps with quality of life at this moment, then I’m on board with that. But also, let’s talk about what this means. Let’s talk about the fact that we might be entering a different stage of Parkinson’s disease.”

We know that in Parkinson’s disease, one of the major pathways to the end of life is through these kinds of recurrent infections. So what’s most important now that we’re here? How do we want to use this time? What do we want this time to look like? Where do we want to be? It’s mainly an entryway to that kind of bigger conversation.

Question: Similarly, I imagine you’d have those conversations about feeding tubes, as swallowing difficulties are common in Parkinson’s.

Answer: Yes, the research on feeding tubes in Parkinson’s is limited. We know they don’t prolong life or improve quality of life in people with dementia in general. But with Parkinson’s, there’s more nuance. If someone’s quality of life is still good, we discuss the pros and cons and whether there might be a point in the future where they’d want to stop tube feeding. In other situations, where someone has advanced disease and other complications, a feeding tube might prolong the dying process unnecessarily. It’s a nuanced conversation, and the decision should be based on individual goals and preferences.

Question: You’ve been at Stanford for over a year now. Do you have any patients with Parkinson’s who’ve been on your palliative care service this whole time? What’s the typical duration?

Answer: For many of the people with Parkinson’s disease that I see in my palliative care clinic, many of them do have advanced Parkinson’s disease, and I am managing a lot of different symptoms, addressing caregiver concerns, and helping people navigate complicated decisions. In that period of time, there’s a lot to discuss; there are a lot of needs. For many of those people, especially when they are at that late stage in which there are a lot of needs, I will follow them until the end of life. For those newly diagnosed, my role is to help them adjust and adapt to their diagnosis and look ahead. They might need more intensive support initially, but then they might “graduate” and return as needed when their situation changes.

Moderator comment: One of our attendees mentioned a study by Dr. Maya Katz when she was at UCSF about the whole-team approach in palliative care.

Answer: Yes, Dr. Maya Katz was one of the real parents of neuropalliative care, she was part of the wave of doctors that really introduced and developed it at UCSF. The study the she and her collaboratives ran comparing two groups, one group receiving integrative outpatient palliative care with Parkinson’s disease and the other group who did not, and it showed similar benefits to the one study I mentioned earlier in the presentation, with improved symptom burden and reduced caregiver burden for those receiving palliative care.

Moderator comment: That first study you mentioned (Temel, 2010, NEJM) really highlights the difference palliative care can make in longevity.

Answer: Yes, it was an inflection point in the field, demonstrating that palliative care not only improves quality of life but can also prolong life. It likely reduces stress and improves overall well-being, contributing to better outcomes, and it benefits the whole family system as well. Reducing caregiver burden is a major goal of palliative care. Caregivers often experience significant stress and health challenges themselves, so supporting them is crucial.