In the 13 years since Mike Rabow, MD, established the Symptom Management Service at the UCSF Helen Diller Family Comprehensive Cancer Center, with the support of Peter Carroll, MD, Gerri Shields, and the Mount Zion Health Fund, the specialty palliative care program has grown into one of largest in the country and serves as a national model. Below, Rabow discusses “primary” palliative care at UCSF and efforts to integrate it earlier into treatment for cancer patients. 

 

"It is not a question of either quantity or quality of life. It is not either/or, it is both/and."

Q. How many cancer patients at UCSF have palliative care integrated into their treatment plans?

A. Since 2005, we’ve grown to 31 half-day clinics each week. We see about 10% of patients in the cancer center, which is a good number but still a relatively small percentage of all patients with metastatic disease. The vast majority of cancer center patients are not receiving specialty palliative care. This is counter to ASCO’s recommendation that all patients with metastatic disease receive palliative care, along with their oncologic care, within 8 weeks of diagnosis. 

 

Q. Describe what palliative care includes at UCSF?

A. In the SMS, all patients and their loved ones are seen by a palliative care physician or nurse practitioner, and most patients by the other key members of our interdisciplinary team-- nurses, chaplains, social workers, nutritionists, and psychologists.  The focus includes help with managing physical symptoms (like pain and fatigue), emotional symptoms (like anxiety), relationship stress, and existential distress.  In addition, we support patients in trying to determine and express what matters most to them and how to align their cancer care with their goals for a high-quality life.  We support patients with advance care planning workshops, support for children whose parents are facing cancer, and coordination of other UCSF support services. 

 

Q. What are the obstacles to incorporating palliative care into treatment earlier? 

A. The classic reason patients aren’t referred is that palliative care is misunderstood as being the same as end-of-life care.  Many times, patients do not want to accept a referral to something that sounds like end of life. The reality is that once they get into palliative care, most patients realize palliative care is for anyone facing serious illness, regardless of prognosis, and they wish they’d started earlier. Another challenge is that we have a huge workforce shortage in specialty palliative care. In the state of California, for instance, specialty palliative care services can meet only about one-third of the need.

 

Palliative care took a long time to establish itself as a field. Now, palliative care 2.0 is about stepping back from separateness and integrating into routine care all patients. It’s the 100% of patients we care about, not just the 10% we see.  Primary palliative care is having all patients get basic palliative care services from their regular clinical teams.

 

Q. What are the elements of successful primary palliative care?

A. There are three key things. First is symptom management for pain, emotional distress, and fatigue. In short, helping people feel better. Oncology teams need to be addressing this primarily as a matter of basic care. Typically and appropriately most of the time, their focus is on disease treatment and not symptom management. Cancer care is so complex technically and intellectually, and increasingly so, and we can’t expect just one person to do it all.

 

Second is advance care planning. This means really figuring out at the beginning what matters most to patients and then aligning their care with those preferences and values. Across health care, we assume that people just want to live as long as possible and would do anything to do so. However, most patients would say that’s not necessarily true – that they are not willing to endure absolutely anything for more time.  Quality of life may be the most important thing for most people, especially in the last months or years of life. We need to be better at informing patients what their treatments can and cannot achieve and give them signposts for making decisions. In the beginning, getting cancer-free is the priority. Later on, other priorities may supersede that. Everyone should have an advance care plan and a surrogate to help with decisions if the patient gets to a point where they can no longer communicate their own wishes.

 

Third, excellent communication is important, and everyone in healthcare needs skill in this. This includes asking patients more questions before and throughout treatment and making appropriate referrals at the right time. The Cancer Center has a well-developed Symptom Management Service that’s quite large and available to many patients.  There are lots of other great services available at UCSF. We’re excited to collaborate with teams and develop protocols for all types of cancer.

 

Q. What does research say about patients who receive palliative care and the places that offer it earlier?

A. Perhaps the most important finding is that the best cancer care you can get is a combination of excellent oncologic care and palliative care.  In some circumstances, adding palliative care to cancer care prolongs life.  So, it is not a question of either quantity or quality of life.  It is not either/or, it is both/and.  In addition, our own research here at UCSF shows that patients have improved symptoms and better quality of care at the end of life when they start with palliative care earlier in the course of cancer care.  Finally, research has shown convincingly that most people have thought about advance care planning and want to discuss with their doctor, but they expect the doctor to bring it up.  Obviously, more research is needed, especially to develop better ways to help people feel better as they are going through cancer treatment.

 

Q. What drew you to palliative care as a focus of practicing medicine?

A. When I was training in primary care medicine, I had an experience during residency in which I discovered what was most important to me was addressing the suffering of others. I later did a fellowship focused on trying to understand empathy and compassion in the doctor-patient relationship and found my “people” and my path.