Preserve! Prevent! Prolong! (Embrace These as the Goals of Care)

I recently followed a minor twitter based jousting match between various cancer treating specialists about how we present the goals of care to patients. The conversation went something like this (on Twitter):

1. Dear Surgeons - stop telling patients “We got it all” signed, Medical Oncologists.
2. Dear Medical Oncologists – please inform your patients that your treatments for metastatic disease are palliative, not curative. Signed, Surgeons and Radiation Oncologists.

That’s where I decided to weigh in about one of my biggest pet peeves in oncology, this notion that treatments for metastatic disease are EITHER palliative OR curative. As if there are only those two options.

I have been seeing it more recently in EPIC, the electronic health record (EHR) system that is a near monopoly in the US in medical record keeping,  and in particular in the VIA Oncology pathways program we use for entering orders. Perhaps you have seen this: When entering the treatment you want ( e.g. docetaxel, enzalutamide, etc) it walks you through a series of prompts regarding the questions, one of which is “Goal of Treatment” and you have to choose between one of two options. Option one is “Cure” while option two is “Palliation”.

This is what infuriates me because neither one of these is a goal for me. Let’s dispense with what the goals aren’t, then circle back to what the goals actually are.

Palliation – a treatment intended to alleviate symptoms only, and not intended to alter the natural history of the disease. The classic example is giving morphine for cancer-related pain to a patient with Stage IV disease

Curative- a treatment intended to eliminate illness and return the patient to his premorbid state of wellness without the need for ongoing or further cancer care. The classic example is giving BEP for testicular cancer or even adjuvant chemotherapy for colorectal cancer, where the success of the treatment is driven by data to show that a reduction in relapse and death arising from the adjuvant treatment is tantamount to a ‘cure’ in many.

A lot of cancer patients, if not MOST cancer patients, live somewhere in between these two clinical states. So who doesn’t fit in there? The patient with a rising PSA post-prostatectomy, patients with non-metastatic CRPC and just about anybody with mCRPC who does not require pain control, which is a LOT of people for those of us who focus on prostate cancer!

When we treat these patients with enzalutamide, abiraterone, or even docetaxel, we are not aiming to palliate a symptom, and we acknowledge that cure is unlikely, but we still can offer them a lot of clinical benefits.

And the outcomes of men with prostate cancer are also challenging to communicate for a variety of reasons.

For example, consider the concept of “Cure, but on Treatment”. This is a very common situation not only in oncology but in many aspects of internal medicine.  Some prostate cancer patients will live a very long time on ADT for metastatic disease and may die at their usual life expectancy of a non-prostate cancer cause while receiving therapy. Were they cured?

Technically they are not cured, but functionally they are. Because they were receiving anticancer treatment right up until their death, a potentially lethal condition (metastatic prostate cancer) was converted to not life ending. That’s a pretty decent goal. Cardiologists and primary care doctors do it with statins, aspirin and blood pressure control, and it’s also done with diabetics via insulin and other medications. It’s not a cure in the classic sense, because the treatment doesn’t eliminate the condition and allow for discontinuation of therapy, but it functions as one for the patient.

Next, consider that physical pain is not the only symptom of cancer. In fact, many men with mCRPC can live for years with advancing disease without getting a form of the disease that requires significant pain medications (this may be due to preemptive use of bone targeting agents, steroids and underlying disease factors) What about men who suffer from the anxiety of progressing disease, and may have symptoms of it that aren’t even objectively apparent (anxiety, depression, existential crisis, loss of workability, financial toxicity, fatigue)

Simply applying the term “palliative” to the goals of their care just doesn’t seem right.

So, in my communication with patients, I have started to use a convenient acronym for my goals of care, and I even incorporate it into my lectures on the topic: “The Three P’s”

Preserve, Prevent, Prolong

Preserve refers to maintaining a good quality of life and function. Let’s face it, many of the patients we are treating for metastatic disease might not even know they had a problem if it weren’t for PSA tests, bone scans and the like because they are free of any symptom from the disease. Let’s not take a condition that is an immediate threat to the well-being and make it one. By preserving, I mean with are administering a treatment that will allow them to work, play, travel and be whoever they want to be. We do this by being judicious with the toxicity of treatments, respecting their life goals and timing our interventions around them, and listening to what it is they most want to hold on to.

Prevent refers to using treatments of many modalities to avoid disease-related complications – fractures, urinary obstruction, fatigue, etc. We do this with denosumab, preventing fractures. I think we do this with radiation to the primary, even in the face of metastatic disease  - we are preventing obstruction, discomfort and bleeding down the road assuming a patient gets CRPC and uncontrolled growth of a primary tumor (we may also be prolonging life according to the Stampede study).

Prolong should be obvious. The treatments we use don’t cure patients but they can lead to meaningful prolongations of life. We not just forestalling death, we only are prolonging life. And hopefully, we are prolonging quality life, time with family, friends, meaningful work and doing meaningful things.

We all hope we can cure all cancers one day. That would make our patients happy and would make for fun work for us. That day seems closer with each passing year.

In the meantime, though, let's try to remember that we do more than palliate. Let's reframe the language we use when discussing the goals of care in patients with metastatic disease.

Written by: Charles Ryan, MD, B.J. Kennedy Chair in Clinical Medical Oncology, Director and Professor of Medicine, Division of Hematology, Oncology and Transplantation, University of Minnesota, Minneapolis, Minnesota

Published Date: April 23rd, 2019