Advocating for Patients

PracticeUpdate: Why do patients sometimes need an advocate as they navigate the healthcare system?

Dr. Schwartzberg: I believe that patients always need an advocate in today's healthcare system, which is incredibly complex and cannot be managed by a lay person, unless she has almost unlimited resources. Navigating the healthcare system requires scheduling abilities. It requires financial acumen that is hard to come by. It requires deciphering sometimes arcane jargon and statements, particularly financial. So, we have addressed this in healthcare by appointing navigators for patients, which goes a pretty long way towards helping patients go through what is literally a maze. And it is a maze of care, particularly as cancer care has gotten more multidisciplinary and patients have to see multiple providers, many of whom are not under the same roof. The transportation issues, and the scheduling issues, and the communication issues among the providers make it all quite daunting.

Every cancer patient basically needs two navigators: the professional navigator, who can be the physician or the nurse or a healthcare navigating person, and a lay navigator, who is usually a family member. Some people can do it on their own, but they have to be relatively healthy to do that.

PracticeUpdate: What are some ways that healthcare providers can serve as advocates for their patients?

Lillie Shockney: I expect that everyone who is taking care of a cancer patient to assume an advocacy role on her behalf. But I think that those who do it incredibly well are nurses, nurse practitioners and nurse navigators. We know our patients on a personal level. There is a tendency in healthcare to just think about the disease and its treatment. But, it's like, no; the patient still is a fifth-grade teacher, even if she's not teaching anymore. It’s clearly a large part of her identity and part of who she is. And she is a mother, and a wife, and a daughter.

So, at things like tumor board meetings, when we're discussing treatment recommendations, I am that voice that's going to say, "I've had a private conversation with Elaine and she asked me to speak on her behalf this evening. She wants to preserve her quality of life, which she's now rapidly losing. She wants to be home with her children and have hospice at home."

And I find that the team is always thankful that someone has had that conversation with the patient because treatment for treatment's sake is bad care. It is just bad care. There are other times that a patient may say, "I'm going to do this next treatment because I don't want to hurt the doctor's feelings." Why are his feelings important? "Well, he's trying to extend my life." You're not here to make us feel better. That's not your job. That's our job for you, right? We need to be taking care of you and taking a look at what is important to you.

I ask the patient, "What word do you attach to yourself? Are you a thriver? Are you a survivor? Are you a warrior?" But some patients just don't like any of those terms whatsoever. They may very well say to me, "I want to be known as a schoolteacher." That's how she wants people to see her.

People think that hospice means giving up, and they think palliative care also means giving up. So, if a patient says, "I'm a fighter," when it's time to take that different path, I don't tell her that it's time to give up, it's time to throw the towel in. I tell her, “It's time to regain control of your life,” because that's what we're going to do. We want to maximize the patient’s quality of life; we want her to spend her time, not in the infusion center, but where she wants to be spending her time.

Dr. Schwartzberg: Well, the biggest advocacy that healthcare providers have to do is to make certain that patients get the best treatments that are being recommended. Unfortunately, because of the cost of healthcare in the US today, providers are forced into an advocacy position to defend treatment decisions that they make even when they're completely evidence-based. There is a process called prior authorization, which most insurance companies utilize to hold down costs and to forestall treatments that are not effective or that are more expensive than others that work just as well. Unfortunately, prior authorization is a blunt instrument, and it requires a great deal of the provider's time and staff time to override arbitrary denials of a particular therapy. Many patients aren't even aware that this is happening every single day in every single oncology office in the country. Everyone acknowledges that it's not a good system, but we haven't replaced it with something better.

Advocacy on behalf of the patients is happening every second of every day to make sure that they get good treatments. But, broader than that, advocacy, particularly for health equity, is really important. We have patients who can't get to their appointments because they don't have transportation. They don't have a car, or they aren’t on a bus route. They can't miss their work or they're going to be fired. And you sometimes have to bend over backwards—and you should—in order to make certain that you're advocating both on a personal and on a societal basis for people who have less than unlimited means so they can get the right care for their treatment just like others can.

PracticeUpdate: Are there any additional areas where a physician can be a patient advocate?

Dr. Schwartzberg: There is one other point on advocacy that occurs to me and that is around clinical trials, which is something we don't talk about a lot. I really do believe that providers should take the role of advocating on participation in clinical trials for our patients, which means that they should be presenting clinical trial options to patients when appropriate. And there are many appropriate and potentially attractive trials because we don't cure every cancer and, therefore, there are new ways to approach a disease that potentially are better. When we're taking care of a lot of patients, it's hard to remember that; but, it really is, in my opinion, an essential advocacy to provide patients with clinical trial options. Not that the trial drug will always be better than the standard of care, but just the fact that the patient has the opportunity to participate and advance our knowledge. The trials are never designed so that a participant will get a therapy that would be expected to be inferior, even though it may be unknown in terms of the effects. As oncologists, we should remember to advocate for our patients to consider participation in clinical trials.