Value is a multidimensional term in healthcare that encompasses many meanings for different stakeholders.1 Robin B. Atkins, RN, OCN, an outpatient community oncology nurse with three decades of experience, recently talked with the Institute for Clinical Immuno-Oncology (ICLIO) about what value means for nurses and patient care. She argues that as patients are faced with more cost sharing in cancer care, particularly with regard to immuno-oncology therapies, the interdisciplinary oncology care team must include cost in the “value conversations” they are having with their patients.
“We commonly cover efficacy and toxicity, and eventually quality of life, but we leave out the monetary cost of our recommendations almost entirely. “
Financial Literacy is Part of Talking about Value
How is value discussed in relation to your everyday work and interface with patients?
Robin B. Atkins: I read the American Society of Clinical Oncology (ASCO) statement from last August on value, and it’s clear that value really has a different meaning for all the stakeholders. Even prior to reading the statement, my first thought was that value to patients is rarely about cost. It’s more about meaning—the meaningful outcomes cancer treatment might provide.
Most patients value treatments which afford them with the greatest chance at achieving personal life goals such as attending family graduations, seeing grandchildren born, etc. But they really don’t understand the financial aspects of cancer care, and they need to. Unfortunately, providers don’t do the best job of making financial implications transparent. For example, I’ve witnessed too many instances in our outpatient setting where patients want to begin treatment but cannot because we are waiting on insurance authorizations, appeals, and peer-to-peer reviews. Patients are really quite surprised when they learn that insurance doesn’t automatically authorize payment for a cancer therapy.
Understandably, it’s a mind-blowing whirlwind when people are first diagnosed and things typically have to happen very quickly. After all, quality cancer programs have been identified as those which are able to move a patient from suspicious mass to first dose of treatment in a specific period of time. Such efficiency is associated with improved outcomes in many cases. Unfortunately, patients need to make important decisions with very little time to think through anything.
The issue for providers in terms of cost value is, “How do you even begin a conversation about the dollar figure for the care that you’re recommending for a patient who’s just learned he or she has a terminal illness?” I know firsthand what patients go without in order to pay for treatment at all costs. They make the hard choice to perhaps not pay their rent, their fuel bills, buy food. They lose their jobs. Their other comorbid diseases get out of hand because they’re not able to purchase their medications or maintain follow-up with other providers. Uncontrolled diabetes, hypertension, or COPD can increase the cost of cancer care by increasing chemo and immunotherapy toxicities.
It’s not fair to patients if they feel like they’re having to make those kinds of sacrifices, when if they were better informed—especially along the continuum of their cancer care needs—they would see that they actually do have options and that resources are available.
Value = Living Longer or Living Well, or Both
Atkins: It’s the same issue with end-of-life conversations, which in too many cases happen at the eleventh hour using vague phrasing and references. Patients get into, and stay on, treatment plans too long only being made sicker, not better, because conversations are many times not candid enough or early enough, especially for heavily pretreated patients.
So for patients, value equates more to meaningful benefit. No one can define that benefit except the patient, and such definitions go from one extreme to the other. On the one hand, when someone is told that the therapy they’ve been on is really no longer helping and in fact may only be hastening their death, patients have said to me they want to stay on some sort of treatment until they take their last breath, that the goal for them was just to live as long as possible.
On the other hand, when I present information to patients in terms of, “If you knew you only had three months left to live, what would you want to be doing with that time? Would you want to be coming in to the clinic, having blood drawn, having tests done, having drugs put in you that just make you feel bad? What would you want to be doing with that time?” Patients will say they want to be at home with their families making memories. Unfortunately, quality of life is many times sacrificed on the front end in hopes of achieving more time at the end, time that is never certain. So the spectrum about value is broad in terms of what therapy means to patients.
Given that response rates with immuno-oncology therapies are often are so much more durable than they are with some chemotherapy treatments, do you think immuno-oncology is going to make these conversations easier or harder for both providers and patients?
Atkins: I don’t know that it will do either. Clearly what it comes down to is that discussing treatment costs with patients in the midst of describing the trajectory of a terminal disease makes us, as practitioners, uncomfortable. At times I’ve even felt like it threatened my therapeutic relationship with the patient. But we can cover what has been a taboo territory in the exam room if we do so using clear, culturally-sensitive and respectful explanations.
Upfront candor and honesty go a long way, with trust between the patient and the nurse as well. Patients say so much more to us as nurses, because we do spend the most time with them. I appreciate those opportunities to talk with patients and I do take advantage of them. I’ve become quite intuitive and recognize when someone really needs to have a safe place to express concerns or fears about what’s happening to them.
Patients don’t always talk about it with their spouses or families, or even their doctor but they’ll talk about it with their nurse. So I treat those opportunities with sensivity and kindness, and this in turn adds value to the care I’m providing. Folks want to feel good while they’re trying to live longer. If converations reveal you’re not helping them live well, then perhaps it’s time to talk about whether or not there’s benefit to living longer.
The Value of Immuno-Oncology
It sounds as though, in our national conversation, the very term value itself has become financially loaded.
Atkins: Yes, the first thing you think about is how much does something cost. Immuno-oncology is a very exciting prospect for patients. I think that they’re enchanted with the idea that their own bodies can help them heal. If given a choice, I believe they would choose what they interpret to be a “more natural” way of fighting cancer over being infused with poisons.
The broader category of biotherapy includes not only immunotherapy but many expensive oral agents for which patients must pay out of pocket or purchase using prescription benefits. This brings up a different aspect of value in discussion as few patients can afford to pay outright and then some patients are not eligible for formal assistance programs.
We also give quite a bit of IV immuno-oncology therapy in our ambulatory infusion center. These agents are not complicated to administer, typically require no premedications, patients generally feel great on them and a greater longevity is being realized (nivolumeb, pembrolizumab) as opposed to chemotherapeutic options. I think that patients would assign more value, in the overall sense of the word, to immunotherapy treatment options for all of these reasons.
The science of immuno-oncology is indeed fascinating. We have learned to manipulate our bodies to fight for us. I don’t know that we’ll ever cure cancer, but [for many cancers] we’ve certainly created at the very least a type of chronic disease out of it. Still we also need to ask in terms of biotherapy, “At what point do we stop tampering with the immune system?”
And recently I’ve been reading about dual PD-1 inhibitor regimens. The possibility for enhanced immune-toxcities does concern me. My belief is that cancer occurs because of a breakdown in our surveillance system, our immune system. Immunotherapeutics engage our immune system to create extremely specific alterations which prevent cancer cell proliferation. I’m wondering what the long-term complications of an altered immune system might be for patients. Will this method of cancer care do more harm than good, especially in the long run, especially with the possibility of sustained responses to therapy?
If you were counseling a nurse who was thinking about moving into the immuno-oncology field, what kind of advice would you offer?
Atkins: First, I would encourage that he or she study cancer biology. The Oncology Nursing Society (ONS) has an excellent online course on this subject. I developed an orientation program for outpatient medical oncology nurses about 10 years ago which included this course. It provides an excellent foundation upon which to learn and apply the concepts of cancer care.
Second, nurses need to understand how immunotherapy differs from chemotherapy. Unless they “get it,” they will not be able to really explain it to the patient. We dedicate a lot of time in the infusion suite to discussing the nuances with patients, and it can be especially helpful when the patient has had prior chemotherapy because you can then have a comparative discussion which actually helps immunotherapy make more sense.
What Nurses Need to Know about Immuno-Oncology
- Study cancer biology.
- Understand and be able to communicate the difference between chemotherapy and biotherapy/immunotherapy.
- Build a network of resources and support to assist with drug procurement, reimbursement, and program development.
- Create a plan to follow up with patients and educate them on how to self-monitor and report side effects.
Third, find out where your resources are. Network through online forums such as the Association of Community Cancer Centers (ACCC) members-only online forum to learn from peers and colleagues. Contact assistance programs or pharmaceutical agencies that offer reimbursement and copay assistance. Develop relationships with specialty pharmacies which payers use for dispensing oral anticancer medications to patients. Host informational in-services for the nursing staff, inviting service representatives in to discuss drugs, access programs and pharmacy participation.
Finally, have a follow-up plan to stay connected with patients. Make phone calls to ensure drug delivery has occurred, that patients understand how to take the medication, safeguard the medication at home, dispose of unused medication, and reorder medication. Patients must be able to self-monitor and self-report. Teaching them and or a caregiver what they need to know to be safe at home is imperative.
- Ramsey S, Schickedanz A. How should we define value in cancer care? Oncologist. 2010;15 Suppl 1:1-4.