Am I Sick Enough To Qualify? Patients and the Palliative Care Specialty
An Ask the Expert conversation with Dr. Grant Smith, palliative-care specialist and clinical associate professor at Stanford Medicine
When Smart Patients members were asked what they most wanted a palliative-care expert to explain, they answered with three types of questions. The first pointed to a common misconception and fear linked to palliative care: Is palliative care a quiet way of signaling the end? Then, the questions became practical: Am I eligible? Do I qualify? Finally, our members wanted to jump right into logistics: Where and how do I get palliative care?
Dr. Grant Smith of Stanford Medicine joined us to help our members better understand when palliative care is advisable and how to use it.
Question 1: Is palliative care a quiet way of signaling the end — and what is it really?
This question is understandable, yet, it’s also misunderstood that a referral to palliative care means the doctor has given up, or that time must be short. National public-opinion research from the Center to Advance Palliative Care has found that roughly 70% of Americans are essentially unfamiliar with the term. Additionally, “palliative” is used to describe two different things that are easy to confuse.
Dr. Smith explained the difference between palliative treatment and palliative care. (Note: These definitions apply to health care in the United States. Other countries may define things differently.)
Palliative treatment means any treatment for a disease that isn't considered curable, as well as any treatment aimed solely at relieving symptoms.
Palliative care is different; it's a separate specialty on its own. If a patient has a serious ongoing health problem, a palliative care team can help with any issue that affects the physical, emotional, existential, or practical parts of life that isn't being handled by other healthcare professionals.
With this definition, starting early doesn't mean giving up. The benefits of palliative care are now supported by decades of data. This is what Dr. Smith wants patients to understand.
Question 2: How do I qualify for palliative care?
Here’s a primary question on our members' minds: "How sick do we have to be?"
Patients and caregivers wanted to know whether there's some "bad enough to qualify" stage a person has to reach before becoming eligible for palliative care. It’s not uncommon to think suffering must reach a certain level of severity before help is called for.
Dr. Smith’s answer challenged that premise. The threshold, he explained, is not a severity score. "I like to remind people that the need for palliative care is not based on prognosis or 'how sick you are' but really on your needs and whether those are being adequately addressed by your other team members." Palliative care, in his framing, is an extra layer of support. It’s available at any age or stage, and it's provided along with the existing medical treatment. A patient does not graduate into palliative care by getting worse. It’s there when a serious illness creates other personal difficulties that aren't being dealt with. Whether these problems are physical, emotional, existential, spiritual, or practical, palliative care can help.
Regarding when to begin palliative care, a landmark study in 2010 looked at patients newly diagnosed with metastatic lung cancer. Those who received palliative care from the beginning reported better quality of life and better mood. (Temel et al., NEJM 2010)
Question 3: Where can I get palliative care?
"Many autoimmune patients are desperately ill, but there seems to be no access to palliative care. We can look normal on paper and are barely able to find any palliative care, much less get a referral to a palliative care team. Any suggestions for us?"
In the US, the healthcare system’s referral process and our health insurance are tuned to certain diagnoses. Sometimes people fall through the cracks if their serious illnesses don't fit the template. Dr. Smith acknowledged that "people living with autoimmune diseases are rarely referred to palliative care," and he does not fully understand why. Palliative care is a young specialty (board-certified only since 2006) and the reality is that demand is greater than the number of clinicians. Relatively little has been published about what services specialty palliative care can offer people living with autoimmune disease.
Dr. Smith pointed members to the national directory at GetPalliativeCare.org and then shared language for how to ask for palliative care: "I would like a referral to palliative care as an extra layer of support for pain management," for example. He explained that a specific ask helps a primary-care doctor or rheumatologist understand what you're actually seeking, feel more confident making the referral, or think through alternatives if a palliative team truly isn't available. One member observed that often patients already know which of their doctors grasps how serious their situation is. That doctor is the one most likely to say yes when asked for a referral.
The Patterns Underneath
Across three days, a few striking points emerged.
One is that not everything labeled "palliative care" offers the complete program. One member said a presentation he attended on it offered "one nurse visit a month plus one social worker visit a month" and asked whether that was typical. Dr. Smith explained a complete palliative-care team is interdisciplinary and includes a clinician who can actually prescribe alongside nursing, social work, and spiritual care. Stripped-down services may still help, but patients deserve to know what they're being offered. His advice when a service calls itself palliative care is to ask who is on the team and what they can do for the patient.
At times in the conversation, the patients and caregivers were the experts. Members answered each other's questions about hospice coverage, Medicare logistics, and what to do when a loved one in hospice needs emergency care. When asked how a palliative team can help someone with a rare disease they have never encountered before, Dr. Smith replied, "There is no way a palliative care team will be expert in every rare disease, so we must respect the knowledge the patient is bringing."
And finally: caregivers carry a unique weight in this decision. For those who originally felt seeking palliative care support would be a form of surrender, Dr. Smith reminded them that attention to quality of life is part of what helps people stay on treatment.
The Takeaways for Today and Tomorrow
Here’s a snapshot to reference when thinking through palliative care:
You don't have to qualify by getting sicker. If a serious illness is straining any major part of your life and your current team can't fully address it, that's reason enough to ask.
Name the need, not just the service. Being specific about what extra layers of support you need works better than a general request for palliative care.
Ask who's on the team. A real palliative-care team includes a prescriber plus nursing, social work, and spiritual care. It's fair to ask before you accept.
Start with the directory. GetPalliativeCare.org lists reputable teams by region. Hospital social workers and case managers can also help locate one.
Distance shouldn't disqualify you. If travel is hard or you're too unwell to make the trip, ask specifically about telehealth or home visits. Remote palliative consultation is increasingly available and, for many patients, just as effective.(Greer, et.al., JAMA 2024)
Thank you Dr. Smith for sharing your time and expertise with Smart Patients!