The Best Cancer Care Isn’t Always The Most Expensive

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:

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.

Alan: The rest of this article is at http://www.washingtonpost.com/blogs/wonkblog/wp/2013/09/21/the-best-cancer-care-isnt-always-the-most-expensive/?wpisrc=nl_wonk