The unidirectional manner in which patients often “receive,” and providers often “deliver,” health care results in a system in which patients are not adequately involved in decision-making processes affecting their care. A more engaged, informed patient who has ownership of their treatment and behaves as an active consumer will be more likely to weigh decisions and choose the treatment that fits them best. Clinical pathways provide opportunities to facilitate this paradigm shift.
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We need to stop delivering health care. And stop providing it as well, for that matter. No, I am not talking about “Death Panels”, rationing, or rampant Darwinism. I am referring to a fundamental limitation to our health care system that subtly pervades its every aspect: the unidirectional manner in which patients often “receive,” and providers often “deliver,” health care.
“Health care delivery” is the operative term for how health care professionals and patients interact. As a patient, the process by which one sees their physician supports this paradigm. A typical process looks like this: one arrives at the office, hospital, or other site of care; checks in at the front lobby; and is given a piece of paper with their patient identification number to take to the check-in area, where he or she will be seen. Arriving there, the patient turns in their slip and is told to take a seat. The patient waits. Eventually, they are led to another room where they wait some more. The patient may be asked to subvert his or her individuality, as well as authority, by undressing and putting on a thin cloth gown so that one looks like every other patient (or subject). Eventually, after a varying amount of time, the health care professional will come in, and the patient will depend on the professional to “deliver” health to them. Historically, the health care professional will wear a white lab coat and stethoscope and hold a chart or, more modernly, a laptop, in the space between where they stand and the patient sits. If the diplomas and certifications that were most likely posted on the wall had not been noticed, the superiority of the health care “provider” is now clearly being communicated. When they tell the patient what to do or what their recommendations are, it is no wonder that the patient is likely to comply without question.
If you doubt that the dynamic of “delivery” is more than a semantic technicality, consider these facts regarding cancer care from the Agency on Health Care Research and Quality1:
• A little more than one-fourth (27.3%) of elderly patients with cancer (aged 65 years or older) who were on Medicare reported that they had a detailed discussion with their physician about the side effects of their cancer treatment;
• About half (49.1%) of elderly patients with cancer on Medicare reported that their medical providers did not discuss their emotional or social needs after treatment at all;
• Only 62.3% of elderly patients with cancer reported that they had a detailed discussion with their physician about follow-up care after their cancer treatment; and
• A little more than one-third (35.9%) of elderly patients with cancer reported having a detailed discussion about lifestyle changes after their cancer treatment.
Cancer is one of the five most costly conditions in the United States, costing an estimated $87.5 billion in 2012. Because of the availability of new therapies and more people living longer with some cancers than ever before, these costs are increasing. If there are diseases where it is important to have engaged, involved patients who do not simply ask their health care to be “delivered” to them by “providers”, this would certainly be one.
A 2012 article in the New England Journal of Medicine reported that “overall, 69% of patients with lung cancer and 81% of patients with colorectal cancer did not report understanding that chemotherapy was not at all likely to cure their cancer.”2 Holding on to false hope as a result of miscommunication or misunderstanding is likely a factor in the disproportionate spend on care during the last year of life, whether due to cancer or otherwise. A more engaged, informed patient who has ownership of their treatment and behaves as an active consumer will be more likely to weigh decisions and choose the treatment that fits them best. Sometimes, this may mean no treatment. The result could very well generate increased patient satisfaction. It could also lower costs by either eliminating treatment a nonengaged patient would have accepted or by increasing compliance with, and therefore effectiveness of, treatment over which a patient feels ownership.
Have you ever ordered something online only to discover that was not what you expected upon opening the package? Whether for yourself or as a gift, we have all been in the situation where we have invested some time and money in an item only to be surprised that the reality of what we requested was different from our hopes. This could have been avoided by a more involved decision-making process.
There are efforts at change in how decisions are made in health care currently underway. Several of the innovative payment models recently launched or announced incorporate patient experience as part of the way that providers are scored and their pay adjusted. Some of these measures include the percentage of beneficiaries that receive psychosocial screening and intervention at least once per episode, and the percentage of beneficiaries that receive a follow-up visit from the participating practice within 7 days after discharge from any inpatient hospitalization.
Patients are also being asked to directly rate their impression of the care they received via surveys, which include questions such as:
• Did the doctors and nurses explain your procedure in a way that was easy to understand?
• When I left the hospital, I had a good understanding of the things I was responsible for in managing my health (strongly disagree/disagree/agree/strongly agree)
• Did the provider listen to you?
These are meaningful and important questions. They always have been, but today’s era of health care reform is the first time that this kind of patient experience has ever been widely monitored, measured, and used to adjust how much providers are paid. As a result of these measures and their financial impact, there are noticeable improvements. Think of the last few times you have been to a physician. Has he/she seemed more attentive? Has he/she listened better and explained things better? Simply put, was it more of a dialogue than in years past? My guess and hope is that the answers are yes. If not, chances are that provider will be penalized for operating under the old paradigm.
There may be opportunities to leverage clinical pathways to facilitate this paradigm shift. While most pathways currently focus on medication alternatives, the inclusion of literacy assessment to algorithms could help inform clinicians of the need to leverage additional resources such as anatomic models or posters, translators, the presence of a caregiver, or other resources in order to increase a patient’s comprehension and recall of their discussion. Inserting this step into a pathway would formalize assessment and application of the best approach to use when engaging in treatment discussions among the clinician-patient “team”. Execution of activities geared towards other quality and patient experience measures could also be strengthened by inserting specific actions into a treatment plan according to patient needs in a pathway-type approach. Another option to formalize via pathways could be a discussion around how the individual patient feels about the relative importance of balancing side effects with efficacy given their specific condition and potential outcome. The answer could be used to trigger an automated re-weighting and re-positioning of treatment options in a given clinical pathway, resulting in an algorithm customized to the specific patient’s priorities.
Challenges with such efforts would likely be similar to typical pathways initiatives and would include identifying the measures that lend themselves to such an approach, gaining agreement in identifying and slotting the appropriate alternatives properly, training staff on their use, proactively socializing or “selling” the pathway in order to achieve buy-in, and both measuring and managing execution. Customization might alrequire careful implementation into electronic medical record systems or other software, but this challenge should not be insurmountable, particularly if piloted in a controlled manner.
Patients who are actively engaged in their health care decisions and who are not only informed of the impact that their behaviors have on their health, but understand this impact, are more likely to be healthy. They are more likely to have a healthier lifestyle and to follow through on interventions that can help them manage their condition. This is not breakthrough thinking—people in general will be more likely to execute certain behaviors if they buy into them and have ownership over the plan.
Changes to our system are currently attempting to incorporate this idea into health care in new ways. A simple but powerful way we can support this change is in the way we talk about our health, which will in turn affect the way we think about it and ultimately, act on it. Asking your health care to be “delivered” to you by a “provider” is yesterday’s model. If we expect patients to be engaged partners at the center of their own health care, we need to speak about it as such. Instead of having our health care “delivered” to us, let’s ask for effective “health care support.” Instead of talking about health care delivery systems, let’s talk about “health care support systems.” Instead of being a “provider”, be a “health care partner.” As a patient, do not expect appropriate “delivery” of something in which you are not actively engaged. Each of these terms has an underlying meaning that is substantially different from our current language and is consistent with our intent. The more we use old terms, the more we are working against our own efforts at cultivating change.
Words have meaning, and they do matter. If putting the patient at the center of care is our true goal, we would be well served to adjust our language accordingly. In doing this, we may find that the package we ordered is actually what we wanted.
For other takes on this topic, read the Counterpoint: "Deliver Care, But Also Engage the Patient."
References
1. Soni A. Experience with health care providers among cancer survivors, US civilian noninstitutionalized population, 2011. Agency on Health Care Research and Quality, MEPS Statistical Brief #451. October 2014.
2. Weeks JC, Catalano PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367(17):1616-1625.
