On Sept. 10, the Institute of Medicine released a new report, "Delivering high-quality cancer care: charting a new course for a system in crisis." Like many IOM publications, this report makes for depressing reading, not because it contains dramatic or frightening revelations, but because many of its recommendations are so obvious and yet would be so difficult to execute in our high-tech but unwieldy, costly and fragmented health-care delivery system.
The IOM makes plain that our cancer care system is particularly poorly organized to properly care for people with advanced cancers. As outlined by Thomas Smith and Bruce Hillner in a now-classic piece, too many patients are subjected to punishing and futile treatments. Too much costly imaging is performed, for too little therapeutic benefit. Too often, costly supportive therapies, such as Epogen, that raise red blood cell counts are provided when they are not needed. The lack of easily used electronic health records aggravates fragmentation of care and perpetuates miscommunication and medical errors.
This isn’t an issue of rationing. America can amply afford the $125 billion we devote to cancer care. Cancer accounts for only about 5 percent of our nation’s $2.8 trillion health-care economy. Yet particularly in the case of advanced cancers, both patients and the wider society could receive greater value for what is spent. Many patients require care delivered with greater thoughtfulness: less-toxic treatment regimes that relieve suffering and protect quality of life when curative care is not possible.
Proper care also requires greater clarity and candor upfront — particularly when the prognosis is not what patients are hoping to hear. According to one recent survey of patients with metastatic cancer, “69% of patients with lung cancer and 81% of those with colorectal cancer did not report understanding that chemotherapy was not at all likely to cure their cancer.” False hope provides temporary comfort. It cannot provide the basis for a realistic or humane treatment plan, much less confidence and trust in the providers.
When advanced cancer care is handled well and things go right, the results can be inspiring. I was reminded of these possibilities by a beautiful video produced in conjunction with the IOM report. It featured several patients, including Amy Berman, shown here:
Ms. Berman is both a geriatric care expert and a cancer patient. She is a senior program officer at the John A. Hartford Foundation. By her own choice, in the face of doctors urging aggressive chemotherapy, she now receives palliative care for Stage 4 inflammatory breast cancer.
You might imagine from that description that she’s bedridden and using a morphine pump in end-of-life care. Despite the gravity of her prognosis, that’s not her current situation. In part because of treatment decisions she and her care team have made, she is enjoying a good quality of life. Energetic and vibrant, she is still working. She recently vacationed at the Great Wall of China.
I caught up with her via video chat at her New York office. We discussed various personal, clinical and policy issues in cancer care. Below is an edited transcript of our conversation:
Harold Pollack: You have such a nice way of presenting yourself, of speaking frankly about things that people don't usually talk about. You're so healthy and vibrant in describing your situation. That’s not really what people are expecting ...
Amy Berman: Thank you. I think that's really the point, from my perspective having worked in the field of geriatrics my entire life. When I was diagnosed, I had some sense of what could be possible and what was most important to me. For me, it's all about holding on to function and quality of life, having a good life for as long as possible.
I went to my original oncologist. And before we knew how advanced the illness was, we laid out together a series of options, depending upon how advanced the disease was. But I knew some things before all the testing results were in. If the disease was really as far advanced, I was not going to do things to strip my quality of life if I couldn’t get that back later. That would be like having a bank account and just depleting it all, knowing that you're not going to make deposits later; it's just not a good idea.
I was shocked when I found out that I was Stage 4, because I feel the way that I look. But I am. There are things that I can do that make me not feel so good. It has metastasized to my lower spine. But I'm very lucky, and I credit a lot of that to the fact that I have palliative care, something that is wholly misunderstood by the public. It is for me an extra layer of support that helps me live a good life for as long as possible.
If you follow my blogs, you can see me jet skiing. You can see me climbing the Great Wall. I work hard, play hard, have a good time. I would have had a very bad three years had I made different choices.
HP: Could you just explain what it means to say that you have Stage 4 disease?
AB: Stage 4 means that the cancer has spread far. In my case, the cancer started at my right breast. Sometimes cancers move, and they can move locally and be fairly controlled. Usually they're a tumor. They're a solid mass that can be removed. My cancer is inflammatory breast cancer. It floats in the lymphatic system. When it appears, it typically has already spread.
Most people who have my form of cancer, they don't catch it early because it's not a lump that you can detect, and that's what happened to me. It appeared on my skin. When I saw it I knew that something was wrong. I did everything quickly, but it had already spread to my lower spine. … It happens to be attracted to my lower spine, but the cancer has spread far. I'm not going to be able to remove everything between my breast and my lower spine. That's just not a practical option.
There are no cures for the kind of cancer that I have. The prognosis: 40 percent live to five years, unlike breast cancer in general, where five-year survival is almost 90 percent. It's the worst prognosis. And yet, if you organize care in the right way, at least for the time that you have, you can maximize the quality of life. That's what I'm trying to do.
HP: When was this diagnosed?
AB: In October of 2010. I'm going to be celebrating three years, and it is a celebration because it's been a very good three years. By the way, I should just let you know. I've probably saved somewhere in the range of $300,000 to $500,000 by going with treatments that really support my quality of life. Not only has it been better for me, it's really been better for everyone.
HP: What have you not done that many people do, given that set of medical challenges?
AB: Most people go to their clinician, and they wait to be told what to do. They don't ask about what the potential benefits are, what the different options are, what it's going to make them feel like now, what it will make them feel like later.
Not only just their diagnosis, their prognosis: What's the likely course of the disease, and will anything that you're doing change that? Nobody knows for sure. But I think it's fair to say that these clinicians have a tremendous amount of experience and understanding what the likelihood is. There certainly is a lot of evidence to tell people what likely will happen. We consumers are entitled to that very basic information. We are part of the decision-making because we're the ones who live with the consequences.
HP: What are some very aggressive treatments that you might have been channeled into but that you chose not to do, once you considered the tradeoffs involved?
AB: A leading expert who I had gone to who was a specialist in inflammatory breast cancer told me that this was what he was going to do. He was going to do very intense chemotherapy, as much as my body could handle. He would perform a mastectomy, followed by radiation, and then again do the most intense version of chemotherapy.
His goal was to go aggressive: "We're going to fight, fight, fight." He used those words. I did ask him whether that was going to change the outcome. He said, "In all likelihood, no."
I went back to my original doctor because we had talked about the different options. We had agreed there were other things that I could do. I could take medication to hold the cancer at bay but medications that might not give me those same levels of side effects.
I didn't have to do a mastectomy now. The cancer's already spread. It's not as though removing the breast is going to remove the cancer. Remember, it's already spread. I may need to do a mastectomy later, for palliative reasons, if the breast becomes so inflamed that it helps me live a better life to remove it, but it would be the worst thing for me to do now. I might have swelling of the arm, which means that maybe I couldn't get dressed easily. I certainly might not be going to work.
I probably would be in and out of the hospital with nausea and other side effects. Certainly pain, and burns related to the radiation... I would have done all of those things if there were a likely benefit, if this was going to help me. But for some, either unlikely benefit, or no benefit, I decided not to risk the limited time that I have. I would be risking that. And to me, that's the one thing that I choose to hold onto.
As it turns out, the medications that I'm taking are holding the cancer at bay. Everything has been going very well for three years, which is a win. For people who are living with cancer, not everyone is going to be somebody who survives cancer and goes on and gets better. For me, this is the win. For most people, since most people are older adults with multiple chronic conditions, they have other things going on with them. They have to think about what they're doing to themselves, and whether they're likely going to see those benefits later on.
HP: I want to talk about that in just a minute. You say you're getting palliative care. I think most people, when they think about palliative care, they imagine that I'm interviewing you right now and maybe you are in a bed, strapped up to a pain medication pump, or something like that. In fact, you’re video chatting with me from your office. At this moment and in the IOM video, you look fine. What is the palliative care that you are receiving, and how is it making your life better?
AB: Well, palliative care means something different at different times, but the recommendations in the IOM report are to have palliative care begin at diagnosis and follow all the way through. Well, for me… I'll be personal about this. For me, at the beginning of taking the medication, which was a lighter course of therapy -- an easier course of therapy -- it still had side effects, and managing those side effects, whether they're discomforts or nausea or .. .making sure that they're attending to those things so I can live as good a quality of life as possible.
That's the role of palliative care. It supports you. For some people, it supports them during active treatment, and they're going to get better, and they don't need palliative care after that. Palliative care is not end-of-life care. For some people it's provided at end of life, but there are a whole lot of people that are not at end of life, and palliative care is really at the start of serious illness that might have these kinds of needs for pain management and support; even spiritual support.
HP: It's striking that we even have to have a term, "palliative care." Basically what you're describing are support therapies that should presumably accompany any medical interventions that you're receiving, to manage the impact of those treatments on your quality of life. Managing side-effects of powerful medications should be baseline, without the need for special terms or IOM reports. But it's clearly not.
AB: I agree with you completely, Harold. This IOM report is a major reframing, in two senses.
Number one, it recognizes that the core population who have cancer are people who typically have other kinds of problems, and the cancer will be a chronic condition for many of those people. We've structured cancer care as curative. Like everything else in health care, we want to cure. We have to think about the "carative" nature. We have to think about what happens for people who will be living with, and potentially even dying from, the disease.
If that is the majority of people, then we have to really rethink what are the kind of supports we have to provide and how to organize the care so that more people can have my experience -- live as well as possible for as long as possible -- not just throw everything at it, if there's not going to be a good outcome from that.
HP: By the way, you're on my all-time real-life Madden team, if you are familiar with that term.
AB: Yes I am. That's awesome (laughs). Thank you, Harold.
HP: Let's talk about this IOM report for a minute. Part of me says: "Oh my God, I can't believe that we need an IOM report on this." The idea that the majority of cancer patients are over 65, but the majority of the data and care design is really around younger people is quite astonishing. Why is there such belated recognition of the often geriatric nature of the care challenge in cancer care?
AB: Well, I think that that's the heroic nature of medicine. I think medicine's framing is largely around the win, and the win is not necessarily viewed as quality of life. The win is viewed as cure.
Perhaps thinking about people who are older, they haven't really looked at the population. Two-thirds are older adults and, as you suggested, the research that supports evidence-based treatment, how we care for people, has largely excluded older adults from the trials.
In fact, if you really want to get into it, the research should be on people who have multiple health-care issues, because that's the population that we're really serving. They don't just have cancer. For the older adults, which are the large population having cancer, they typically have three or more chronic diseases. They may have functional impairment. We don't seek to do research with that level of complexity, but now it's possible to do that.
The recommendations include: How do we learn in real time, getting feedback from people who are experiencing the cancer? It’s not just clinical trials. There are new ways to even think about how we gather information. There's a lot to be done.
HP: So co-morbidity and co-occurring conditions of various sorts are what most people experience, not an exceptional aspect of someone's case. Older people, in particular, are likely to have multiple challenges, physically and perhaps cognitively or in other ways. What are some ways the system has to somehow reorient the way care is delivered to really do this well?
AB: If we do this really well, we are going to be much more transparent in the information that we give to people and families. We are going to understand that we need to support those individuals and families and recognize where they are generally in their health. Cancer is one issue, but it's not the totality. It's not the big picture for that person. The way we organize someone’s care needs to recognize everything that's going on, including the person's values and goals.
Not everyone is going to feel the way that I do about how I organize my own care. But the research shows that people do want to know. Even if it's hard to hear, they do want to know. People tend to make less aggressive decisions than the doctors make for them. In fact, most doctors, according to the research, want less aggressive care than what they provide for their patients.
We have costs that are out of control. We're doing physical harm, needless harm and needless cost, including on consumers. We have to be able to stop and sit back and look at how we reframe. I think the IOM really did a good job of that.
HP: In a larger sense, cancer care is not bankrupting the nation. We spend more than $100 billion, it's certainly a major activity. But so much of the costly care people receive is not providing the quality of life or curative dimension that we want to see. The real issues don't really concern rationing.
If we're spending the same amount of money we're spending now and we were getting good outcomes, it would be great. We can afford it. But we spend a lot of that money on all sorts of interventions that are not really helping people. We don't quite know how to step back from that. It seems that both patients and the caregivers would like to be more restrained at certain moments, and it's really hard to do. This is a basic challenge.
AB: When we discuss payment issues, palliative care now exists in 80 percent of large hospitals; it's reached the tipping point. You can get a palliative-care consult in a hospital today. Yet it's harder to find in the community.
Our goal is to keep people out of the hospital. Our goal is to be preventive and supportive and provide this care so people don't end up in the emergency room and [then are] later admitted. So that we are able to help people live well. I'm particularly impressed with Diane Meier and the Center to Advance Palliative Care and the growing work that's being done to advance palliative care in the community. Right now, there really isn't a good reimbursement mechanism to provide that palliative care in the community. Looking at the recommendations, that's one of the greatest opportunities.
HP: Another distinctive geriatric challenge concerns the situation of the caregiver. My dad just had a scary bout with kidney cancer. He’s now doing very well. He had his kidney removed, and he was released from the hospital 18 hours later. Our family converged to help, but especially in the week right after that, it was difficult. My stepmother is 82 and faces her own health challenges. The burden on families is so significant. We haven’t figured out how to help people with that one very well.
AB: When it comes to cancer or any serious illness or major cognitive impairment, the family is the unit of care. That's the bottom line. Everyone is involved in the illness, and everyone needs help and support.
We discharge people from the hospital inadequately prepared to know what to do for themselves. Everything from the diet to the instruction. They go home and they do their own reconciliation of medications they took before with ones that they're prescribed now. Of course, the end result is that 20 percent end up bouncing back into the hospital within 30 days. That's insane, and it costs our society $17.5 billion a year. But for people who are seriously ill, they just plain don't want to be bouncing back into the hospital.
I do think that the report, when it's talking about having engaged patients, I think their lens is the patient and the family. All of the discussions that we had when I was testifying really talked about the need to address the family as a whole: to be prepared, supportive and to deal with their own needs during the illness.
Certainly palliative care doesn't just care for the individual like me. Palliative care addresses the spiritual needs of the family, the whole host of resources and very practical support. You need that.
HP: One of the obstacles in being less aggressive with cancer care is the family and the family's preferences. Family issues also make it hard to be less aggressive. Because of course, family members are so wanting to see a curative outcome.
AB: My family has been incredibly supportive. I can only speak for my experience. My family knows the kind of care that I want. I want the Niagara Falls trajectory. I want to be good, good, good, and drop off the cliff. I don't want to drop off the cliff now and end up at the same endpoint down the road. That would make a very bad life.
My family has been entirely supportive. It is not my experience that families are resistant to this. I think at the end whether the family is resistant or not resistant, it is an individual decision about the care that they want. Most people, when they're in their own position, they tend to make choices that would be less aggressive as a whole.
I would say the best thing is to have conversations before serious illness. To understand the general values that a person has and what they would want done and to have a health-care proxy. Certainly this aligns with the IOM findings as well.
Most people don't have a health-care proxy. I do. But to have somebody be able to make decisions about your health if you're incapacitated, you have to prepare them. If you haven't had conversations with them, you actually leave these individuals with a burden of not knowing. When they don't know, people often make decisions that would be in conflict with what you would want them to do.
Seventy-five percent of people are unable to make some or all decisions at the end of life. Most people have someone that they could say could make decisions for them. But again, if they haven't had the conversations to go with that, the health-care proxy alone is good but not sufficient.
HP: How are you planning ahead for the next several years of your life? It sounds like things are going well for you now. Yet, of course, you have this sword of Damocles hanging. How are you planning and thinking about what the future holds, and how you should be managing your cancer?
AB: That's a great question. I have a health-care proxy. It's my mother. I have a little book, kind of like a diary, where I've written out everything from the funeral home, the burial plot, password for my bank account, the password for my e-mail, basic things. I don't have any particularly fancy or interesting needs.
I’ve talked to my family about their wishes as well. Because as far as I'm concerned, when you pass away, it really, anything around that really is for the living. It's not so much for the deceased. I'm going to respect their wishes as much as I would want them in my health to respect mine. I have a very good and open relationship with my doctor.
The things that concern me are not what happens before I get to the hospital. Many things that concern me involve the multitude of staff that may not be so well-informed, that may not know me, that may come to this with all of the failings of things that are written in this Institute of Medicine report. I worry that they may not cover my pain, that they may not think about my quality of life, that they may not be concerned with my values, and they may try to do things that are completely counter to my wishes.
Some things I can control and plan for, and there are plenty of things that I can't. Certainly the opportunity to participate in the video is one more way that I can hopefully advance better care -- if not for me, then for people who are going to follow after me.