GRACE :: Cancer Basics


IOM: Delivering High-Quality Cancer Care: Charting a New Course For a System in Crisis; Part II: Patient-Centered Communication and Shared Decision Making

download as a pdf file Download PDF of this page

The institute of medicine (IOM) who put out this report deserves credit for bringing patient-centeredness to national attention.  They put out a very famous report in 2011 called Crossing the Quality Chasm: A New Health System for the 21st Century that defined patient-centeredness as, “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”  For those who want to read more about the definition of patient centered care and shared decision making, I refer you to the very beginning of chapter 3 of the report.


The committee who drafted this report focused heavily on the critical importance of engaged patients, a founding principal as well of GRACE.  The report cited a study of 1,057 patient encounters where only 9% resulted in what the study authors felt was an informed medical decision.  They cited other studies that found that clinicians ask for patient preferences in medical decisions only about half the time.  The importance of patient-centeredness and shared decision making is intuitively obvious—of course patients want to know what’s going on with their care!  The report cites a study by Alston et al that asked people how involved they wanted to be:


I want to highlight two major take-away key points.  First, there’s real evidence that patients want to be involved.  Second, not every patient is the same in how much they want to be involved.  I was a bit surprised that of 1, 068 adults surveyed, only ½ wanted to be offered choices of options. 


The report goes a step further in detailing three core reasons why, on a practical level, patient-centeredness and shared decision making is important.  First, cancer care is complex.  Different modalities treat cancer: surgeons, oncologists, radiation oncologists, interventional radiologists plus others.  There are often multiple treatment options.  These various modalities need to be coordinated.  The goals of treatment must be decided (for example, how much to prioritize quality of life or duration of life and whether these even conflict).  Each of these elements shift over time and must therefor be revisited over time.  Second, there are limitations to the evidence base.  Again, this is one of the reasons for GRACE. In addition to wanting patients to know about best evidence, we try very hard to also make clear how good the data is.  In other words, it’s important for a patient to know not only how good we think that a particular treatment is, but also how sure we are that we’re right.  Third, different patients will weigh tradeoffs between options differently and will do so differently at different times in their care.  Obstacles to shared decision making are patient-derived, provider-derived and system derived. 


Patient-derived Barriers


On the patient (and family) side, the diagnosis of cancer can be emotionally overwhelming in addition to being financially and logistically overwhelming.  As a consequence, the average person asks more questions when buying a cell phone or while ordering a meal than he does in the doctor’s office.  Poor health literacy (or lack of literacy at all) limits the ability to acquire and understanding information (think about it: if you lacked literacy, computer access, or the knowledge to look here, you wouldn’t be reading this post at all).



Provider-derived Barriers


On the provider side, the report emphasizes financial concerns—the current reimbursement system does not incentivize long conversations in the doctor’s office.  In fairness to providers, we’re not all paid by the encounter; as an academic doc (sorry to my boss if you’re reading this) my bonus for seeing an extra patient could not buy a pack of gum.  The greater dis-incentive for many providers is the shortage of oncologists—the longer you spend with each patient, the longer other patients have to wait to initiate their care at all.  This latter issue is far more important than just defending the humanity of oncologists: if the shortage of trained providers is expected to get worse, this problem will get worse.  The report (I think fairly) also cites lack of training in quality communication—this, however, is changing and I think that some training programs are already doing this very well. 


System Derived Barriers


Patient-centered communication and shared decision making depend not only on the interaction between doctor and patient, but also the physical and procedural  characteristics of the health care system.  The IOM reports that our system is fragmented, leading to difficulties navigating complex systems with many providers.  Patients will have many providers; when the medical records systems of these providers do not communicate (and few do) patients (typically without medical training and frequently overwhelmed already in many ways) are often relied upon to coordinate care.  While doctors should speak to each other more, there are many barriers, even beyond time, to this happening.


Improving Patient-Centered Communication and Decision making in Cancer: The IOM’s prescription


The IOM does not stop at describing the problem.  Rather, they go on to provide 5 concrete steps that they believe can help solve the problem.  Their suggestions are quite comprehensive; I will heavily summarize, but refer the interested reader to the end of chapter three for more information.


The first prescription is increasing the availability of information.  Internet sources can help, but there is also substantial misinformation and it’s often not comprehensive.  We’ve talked a lot about this subject before on GRACE, so I’ll be brief on this particular subject.  I will, however highlight the need for more information regarding the cost of care.  Most of my patients have a poor understanding of the cost of their care.  I will publically confess that their doctor also has a poor understanding.  If a patient were to ask me how much a particular treatment would cost them, with their specific insurance, I would recognize the importance of the question, but have no idea how to help.  In my defense (and the defense of those who trained me) it took more than 10 years (14 if you include premedical training in college) to become a qualified oncologist and as we enter an age of personalized medicine, this training will become even more rigorous.  While hospitals do have master charge sheets that detail supposed cost of care, these prices are actually really starting points for negotiation with payer sources (insurance companies).  There is no straightforward way to calculate actual cost to a particular patient, even combining these “chargemasters” with the specific insurance carried by a given patient.    A 2013 survey by Rosenthal cited in the IOM’s report showed that only 16% of a randomly selected group of U.S. hospitals were able to provide a cost estimate for a hospital stay.  My surprise at the 16% number is that it was so high.  This situation is unfair—patient centered decision making requires knowledge of cost.  Starting in 2014, the healthcare marketplaces in Obamacare will require participating health plans to create communication tools where patients can research anticipated out-of-pocket costs for specific services.  The IOM also made an interesting recommendation to educate providers—clinical practice guidelines should include information about the costs of different chemotherapy regimens.


The second prescription is the use of decision aids.  Decision aids are tools that provide patients quality information on all treatment options.  Decisions aids take many forms: written information, web sites, web-based tools, and videos.  A Cochrane review of 86 studies (Stacey, 2011) showed that people who used decision-aids had better knowledge of their options, more accurate expectations about potential benefits and harms, made decisions more consistent with their values and were more engaged in their care.  Decisions aids can also reduce the cost of care.


The third prescription was to prioritize clinician training in communication.  Good communication is, at least in part, teachable.  But, less than 10% of oncologists reported formal training in breaking bad news and only 32% reported regularly observing other clinicians break bad news during training (Baile 2000).  The report made some valuable suggestions to clinicians regarding the translation of scientific medical information into plain English; I highly recommend table 3-3 to any clinicians reading this article.


The fourth prescription is the use of care plans.  These plans include understandable information on prognosis, treatment benefits and harms, palliative care, psychosocial support, and estimates of costs.  They should be communicated and personalized at key decision points utilizing decision aids whenever available.  Box 3-3 provides additional information regarding what should be in the cancer care plan and table 3-4 providers an example of a written plan for communication of the cancer plan.


The fifth prescription is the use of new models of payment to incentivize patient-centered communication and shared decision-making.  As I mentioned (admittedly somewhat defensively) above, providers are motivated by far more than just money.  That said, the IOM is spot on in recognizing that changes in incentives will be one important part of the solution.  The report contains a lot of great information and focus on palliative care and end of life care, including the recommendation that incentives for providers be adjusted to encourage timely referral to hospice for end of life care.  In my practice, I take great pride in trying to deliver good hospice care for my patients; Medicare and some insurers allow billing for this care, but the billing is so paltry and my bonus incentives so minimal that I don’t bother to submit the billing forms (again, if any of superiors are reading this, I’m just kidding; of course I bill for everything!)


The next part will focus the workforce caring for patients with cancer; this will be followed by a discussion of the evidence base for high-quality care.

Leave a Reply

Ask Us, Q&A
Cancer Basics Expert Content


download as a pdf file Download PDF of this page

GRACE Cancer Video Library - Lung Cancer Videos




2015 Acquired Resistance in Lung Cancer Patient Forum Videos

download as a pdf file Download PDF of this page

Join the GRACE Faculty

Lung/Thoracic Cancer Blog
Breast Cancer Blog
Pancreatic Cancer Blog
Bladder Cancer Blog
Head/Neck Cancer Blog
Kidney Cancer Blog
download as a pdf file Download PDF of this page

Subscribe to the GRACEcast Podcast on iTunes

download as a pdf file Download PDF of this page

Email Newsletter icon, E-mail Newsletter icon, Email List icon, E-mail List icon

Subscribe to
   (Free Newsletter)

Other Resources

download as a pdf file Download PDF of this page

Biomedical Learning Institute