Aiming Big: Five Recommended Shifts in Attitude & Societal Priorities for Improving Cancer Care in the US

This is an oldie but goodie article from GRACE's archives. Enjoy!
H. Jack West, MD, Founder, President and CEO
 

In my last post, I described a recent piece in the NEJM that proposes several bold ways in which cancer care in the US could be delivered at a much lower cost without compromising patient survival. The first part covers changes that would be most readily implemented by oncologists, but as challenging as those may be to realize, the second part describes five even more daunting but high stakes transitions, which entail changes in “the system” and societal perceptions. So what is coming between us and cost-effective cancer care?

1) Oncologists, patients, caregivers, and the broader range of society need to recognize that we need to make changes: Though easy to recognize, there are many people who stand to lose from a personal perspective in order to create a more sustainable health care system for US society. Oncologists have seen their salaries rise to a relatively high level among medical specialities, but much of that income is based on payment incentives for delivering more treatments more often. Meanwhile, patients and caregivers would have more limited opportunities to have insurers liberally support therapies that are predicated on a desire for more therapy without evidence of benefit. And pharmaceutical companies will need to introduce a semblance of value toward their pricing, since pharmaceutical pricing in cancer care appears to be based more on a sense of “whatever the market will bear”, while the FDA supposed to not consider the cost of a therapy when deciding what agent to approve — meaning that a new standard of care can be defined and tends to be covered with essentially no resistance to pharmaceutical companies extorting prices far exceeding any semblance of value for the benefits of the treatments they provide. So at the present time, all of the major players have incentives to perpetuate a system that is on a fast course to bankrupt US society, and they (we) will need to sacrifice from the perspective of our personal stakes to attain a more more sustainable system.

2) Resetting expectations: Studies consistently demonstrate that patients with cancer and their caregivers usually have unrealistic expectations about how effectively treatments will work, and about the prognosis of their cancer. Medical institutions and the mass media portray a world of ongoing breakthroughs and miracles, but this view is a poor representation of the reality of too many disappointments amidst some encouraging gradual improvements (this is why I have such a negative view of the way the media covers cancer). In truth, very few doctors are well trained to speak honestly about the anticipated benefits and risks of cancer treatments in realistic terms. I hope that the GRACE content educates patients and caregivers to make truly informed decisions, but these are tiny steps. Oncologists would benefit from dedicated training in communicating a realistic view of cancer prognosis and treatment without eliminating hope.

3) Compensation for oncologists (and other physicians) for time spent communicating with patients and families: The US health care system provides financial incentives for physicians who do interventions but pays very little or nothing for many of the tasks that oncologists are required to do that are part of good care for their patients, including answering questions from patients, having family meetings, taking time to consider the nuances of potential clinical trial alternatives, and discussing sensitive topics like end-of-life care. In fact, part of the reason that patients receive more and more chemotherapy beyond the point when it is helpful is that it is more time consuming and much less well financially incentivized to have meaningful discussions about the lack of value of further care and the benefits of emphasis on patient comfort than to just offer another profitable line of chemotherapy. A revision of payment priorities is necessary, so that oncologists can be paid for providing the necessary time and care for their patients, rather than providing an overwhelming incentive to spend less time communicating with their patients and more time delivering treatments, whether beneficial or not.

4) The importance of end-of-life discussions, and better integration of palliative care: Oncologists are often too reluctant to broach the topic of terminal care, and patients and caregivers are also resistant to engaging in these discussions, while politicians and the media are eager to offer a shrill cry of “death panels” to manipulate public opinion. But these discussions are a necessary step in planning for an inevitable need in the setting of incurable cancer. Too often, waiting leaves patients without helpful supportive care until mere days before their death, even though research shows that patients who engage in discussions about planning end of life care experience less depression and anxiety, may live longer in the end, and leave surviving caregivers with a better quality of life…while also obviating expenses of millions of dollars of futile care. We avoid having tough conversations partly because death is so taboo as a topic of discussion in US society, because physicians and patients feel that a transition to hospice/palliative care implies that a patient is being “dismissed”, and because there is an artificial distinction between cancer fighting and palliative care in our current system. As I also mentioned in a prior post, it would be far better to eliminate this sense of mutual exclusivity between treating cancer and palliative care, since patients can benefit greatly from integrating a focus on symptom management on proactive consideration of end-of-life issues while a patient is also undergoing treatments.

5) Comparative effectiveness and cost-effectiveness analysis: The so-called hardest pill to swallow will be an acknowledgement that we simply can’t pay for every treatment that everyone might want, and not even everything that has some hint of benefit. Instead, it will be necessary to compare the effectiveness of different interventions, and especially to review the value of interventions for their cost, so that some independent agency can prioritize treatments and designate which ones can be covered and which ones cannot, so that such decisions don’t fall to “physicians at the bedside”. Physicians are charged with advocating for their patients, so policy makers need to find the resolve to serve in the capacity of assessing the actual value of what society gets for the money spent on various medical treatments, then ultimately limit what is covered. While our society has a visceral dislike of limits on health care, evoking easy sound bites of “rationing health care”, it is also the only societally responsible approach.

I would like to give credit to the authors for covering this topic of reigning costs and presenting several profoundly sensible recommendations for overhauling the unhealthy tenets of our current US health care system in terms of delivery of cancer care. Implementing many of these changes will not only prove difficult but also extremely unpopular to many involved parties who stand to lose money and options, but they are also a necessary remedy for the dire prognosis of our own American health care system.

 
 

3 Responses to Aiming Big: Five Recommended Shifts in Attitude & Societal Priorities for Improving Cancer Care in the US

 
 
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    becky_seattle says:

    Kudos for your courage, Dr. West. This cannot be an easy topic to broach, not just from the incentives that you mention but from the intense emotional pressure that the entire cancer system must get from patients and families.

    It is very, very difficult as a patient and as a citizen who would like to be well-informed to know where to even begin to understand the complexities here.

     
     
     
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    shipcmo says:

    Hi there Doc,
    It has been awhile. In 2006 I was diagonsed with Stage IV right lung cancer, and posted on the old site. After Chemo & a Lobectomy it seemed I was home free until last Summer, with a node in my left lung. Went again to Duke, where they did a wedge resaection. In March I was back for a checkup, and the CT showed “something”, again in my left lung (come back in June). So we went to see my original Oncologist 4/20. She thought a PET scan was in order 4/9. The lung was clear (probably had been an infection), but once again there was “something” in the brain. Had a MRI 4/16, with bad news. Two, perhaps 3 lesions in Cerebellum & Cerebrum. Saw Nuerosurgeon 4/20, sceduled Gamma Knife 4/26. Have not had post-op session yet. There has been mention of WBRT, but I am leary.
    Cheers,
    George Salley

     
     
     
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    Dr West says:

    Yours is a pretty remarkable story. Good luck with the results of the gamma knife. I would just reassure you that WBRT is a very appropriate treatment if new brain lesions happen to appear. But I hope that’s not necessary — the fact that you have done so well for so long suggests that your underlying cancer is quite slow-growing.

    -Dr. West

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