Healthcare and the Human Experience

In the 200th Anniversary Issue of the New England Journal of Medicine, from their article “The Burden of Disease and the Changing Task of Medicine” (Jones et al, JAMA June 2012) physicians David Jones, M.D., Ph.D., Scott Podolsky M.D. and Jeremy Green M.D. closed with the following:

“Is there a best health policy? Our goal should be an integrated policy under which health care and public health programs together fully address the disease burden. But the details depend on how we conceptualize and measure disease. And disease is never static. Just as organisms evolve to keep up with changing environmental conditions…medicine struggles to keep up with the changing burden of disease. Since therapeutic innovation takes time, the burden shifts even as solutions appear. By the time antibiotics and vaccines began combating infectious diseases, mortality had shifted toward heart disease, cancer, and stroke. Great progress has been made to meet these challenges, but the burden of disease will surely shift again. We already face an increasing burden of neuropsychiatric disease for which satisfying treatments do not yet exist.

In many respects, our medical systems are best suited to diseases of the past, not those of the present or future. We must continue to adapt health systems and health policy as the burden of disease evolves. But we must also do more. Diseases can never be reduced to molecular pathways, mere technical problems requiring treatments or cures. Disease is a complex domain of human experience, involving explanation, expectation, and meaning. Doctors must acknowledge this complexity and formulate theories, practices, and systems that fully address the breadth and subtlety of disease.”

These final statements really resonated with me because it validates a need to change our perspectives on how we think about healthcare, refocusing on the need to address the very personal aspects of our health and how we feel when compromised by illness. I also take this as a call for some suggestions, and I happen to have some ideas as to how this “burden of disease” can be addressed, along with how Medicine and healthcare can adapt. In short: 1) we need to focus on what is healthy in order to be better at dealing with disease, and 2) we need to simultaneously take more ownership of our own health and be more collaborative and connected in our relationships, from medical professionals to personal. Let me expand upon these ideas.

Something humbling has happened in all of Medicine over the most recent couple of decades. As a discipline, we aren’t getting much better at treating illness and disease, and though there have been incremental improvements to existing treatment categories, there are no medical miracles on the immediate horizon. Improved screening and prevention has made a difference in recent years, but most developments in pharmacology are variations of existing classes of medication and so “new” treatments tend to be only slightly better than “old” ones, and most of the time are about the same. Most surgical innovations minimize time, risk, and have improved recovery and durability, which are all meaningful improvements, but for non-elective surgery best outcomes are still far from “better than new.” Radiology is being driven by technology with the ability to see anatomy with greater detail and dimension, and with increasing ability to measure functioning through images. However increased visible data has not translated to drastic improvements in patient outcomes. Cancer survival rates have significantly improved compared to 50 years ago, but these rates have mostly plateaued since the late 1990’s for most cancers, and some cancers are still found too late and are often fatal. The Human Genome Project is still promising, but not quite practical for years to come. The greatest medical achievement in recent years has been with HIV, changing it from a deadly and highly stigmatized illness, to a manageable chronic dormant infection…in the Western World. In the Third World it remains a terrible epidemic. But back to our world, we are limited in our efficacy with our epidemics – heart disease, diabetes, dementia, cancer and all of mental illness. And it’s all getting more expensive to treat. Like I said, humbling.

But perhaps this reality is allowing a shift in what we consider “medical treatment” and who can and should provide it for us. Dr. Jones and his colleagues allude to this need to shift our perspectives on how medical care is delivered, connecting these potential changes to the context in which illness occurs – the human experience. In an idealized version of the current medical model, patients get sick, doctors provide expert knowledge and treatment, patients get better. It is a very deferential model for those who are sick, where physicians have both the privilege and burden of most of the responsibility for a patient’s illness. For patients, it’s kind of like using a search engine because you need to know what you are looking for in order for the system to help you. It generally works for treatable illnesses that are outwardly symptomatic that also have successful, quick and affordable treatments. This system “works” poorly for illnesses that require long term intervention, lifestyle change, that don’t have obvious outward symptoms. Or if you have symptoms that are obvious, we can be limited by beliefs about what can be done if it requires treatments that are long term, require lifestyle change, or are too costly or inaccessible. It is also very “illness” focused, rather than “human experience” focused.

Well, in my field of Psychiatry, as the medical subspecialty focusing on the mental part of illness, we should be better at the “human experience” part of delivering medical care right? Did I mention how humbling the last few decades have been for all of medicine?

Because this specialty started with Sigmund Freud, the first Psychiatric treatment option was “the talking cure” – psychotherapy. Because Freud was a physician and not a philosopher (a la When Nietzsche Wept by Irv Yalom), Psychiatry has always been linked with the “sick” part of the human experience. Since the mid century, when the first pharmaceuticals shown to be helpful for psychiatric symptoms came to market, the field has had a gradual but very linear progression towards a more “medical” model for the alleviation of mental illness. However, this progressive use of prescriptions has not correlated with a continuous linear improvement of symptoms. Over the past few decades, the efficacy of antidepressant trials has hovered at best around the 70% mark. If you look at large studies that allow for second, third, and fourth rounds of treatment (i.e. STAR*D), that number gets a little better, but is nowhere approaching 100%. That 70% mark is also not better than antidepressants that came out decades before Prozac, the TCAs and MAOIs. The “new” antidepressants (which first came out in 1987 with Prozac) are much safer, more tolerable and are now very inexpensive (cheaper than vitamins), but they aren’t any more effective. Consumer Reports, just like when they look at cars and dishwashers, has a very thorough and unbiased comparison here. Similar story for the next generation of antipsychotics that have been used for the treatment of Schizophrenia and Bipolar Disorder. Better side effects and tolerability (this is now questionable as well, trading a risk for a chronic neurological disorder for an increased risk of obesity and diabetes), but no greater efficacy except for one (clozapine), and that one has very restrictive side effects. None of the medications, old or new have been able to help with the most pervasive part of Schizophrenia, the “negative” symptoms of apathy, emotional restriction, social withdrawal. People with Schizophrenia are also at higher risk for suicide, substance abuse, dementia and have a lower life expectancy. With Bipolar Disorder, Lithium, first applied to manic-depressive illness in the 1870’s then again in 1949, is still the gold standard for efficacy. Another sobering statistic, is that the rate of suicide, the obvious worst possible outcome in Psychiatry, has not improved over the past few decades as well. Like I said previously, there is a need to get better.

So what can the future of Medicine (Psychiatry included) look like?

First of all, we need to keep all of the current best practices of modern medicine. In no way am I suggesting that everything needs to be changed. In the real world, a 70% efficacy rate really matters for 7 out of 10 people because being sick can be very life altering, and no longer being sick is very welcomed. This is consistent with my every day practice which along with psychotherapy, includes a strong evidence-based approach to appropriate and best use of medication. But a 70% efficacy rate also really matters for the remaining 3 out of 10 for the same reason – because being sick can be very life altering. We must get better because many people remain sick, and it’s my belief, like that of the authors of the JAMA article, that getting better may have to involve a shift in perspective.

One part of this shift is that the perspective needs to be broadened to see the role of physicians reduced, as only being actively involved on the “sick” end of the spectrum. As physicians, we do have specialized expertise in illness, and this is where we have irreplaceable value. However, our medical training is very limited outside of the disease part of the health spectrum, and as we move towards healthiness, our expertise and value decreases, and in a responsible way, so should our contribution. For example, just outside of being “sick” is “no longer sick” but perhaps still unhealthy. Physicians still have a role here, as traditional Preventative Medicine measures, such as vaccination and patient education can be integrated here.  As we continue to move away from illness towards the healthiness end of the spectrum, the role of physician continues to diminish, focusing on health maintenance and screening. At the same time, as the individual moves from illness towards health, the responsibility and contribution to one’s own health increases. Also, as we move further up the spectrum from unhealthy to “normal” and then on to healthy and thriving, other relationships, from non-medical specialists (therapists, dietitians, personal trainers) to friends, family and romantic, contribute even more to our health and wellbeing. At every level, from sick to thriving, the approach is collaborative and relational. At every level there is more personal ownership of our own health. This is the context of “human experience” where we experience not only illness, but health as well.

The other shift in perspective is to have better, loftier, more meaningful goals. “Do no harm” is a pretty mediocre goal if you think about it and health is not just to be free of illness. Here’s a superior goal for “healthcare” – to focus on the care of one’s health, not illness. And I don’t mean more emphasis on prevention, because prevention is still trying to prevent illness. I actually mean looking past illness and towards real healthiness. Personal growth. Wellbeing. Relationships. Meaningfulness. Authenticity. This higher goal of healthcare also expands the scope of who contributes to our health, and therefore we are our own healthcare providers, along with all of our meaningful relationships.

As I mentioned earlier, the humbling lack of recent improvements in efficacy in Medicine may have already started a positive shift in this direction. Just as an example, an older study had shown that exercise can reduce the risk of Alzheimer’s by up to 50% (Laurin et al, Arch Neurol 2001). These results were always discoverable, but in the light of the inadequacy of Alzheimer’s medications to reverse or slow down illness significantly, these types of studies that focus on factors outside of pharmacology have new significance and visibility. In addition, diverse multidisciplinary research (much of which is published outside of medical journals) has demonstrated that these qualities of healthiness, such as happiness and positive relationships, have been associated with longer life, quicker recovery from illness, improved immune system functioning, lower risks of developing dementia, heart disease, and cancer. So there’s reason to believe that this healthiness-focused goal will actually decrease the utilization for traditional Medicine. Indirectly, this would significantly decrease healthcare costs because it is when we are most sick, chronically ill, and when we are dying that most of the money is spent.

Over the next few blog entries, I’ll discuss in greater detail how this model has been applied in specific ways in my field of Psychiatry. While fostering qualities of healthiness, we can simultaneously improve the most serious and often “treatment resistant” parts of mental illness, such as decreasing rates of hospitalization and mood episodes in Bipolar Disorder by improving family interactions. Improve the negative symptoms of Schizophrenia through changing self-defeating beliefs and relearning social skills. Use self-efficacy, conflict resolution, social connection as treatment and long term prevention for Depression. Through compassionate, collaborative and non-judgmental therapy, we can help individuals grow out of Borderline Personality Disorder, with dogma-shattering success. All based on reliable research that already exists, successfully implemented with real people. Like the Alzheimer’s studies, many of these findings are not new, but perhaps this bigger health-focused lens along with the recognition for the need for better solutions will bring new relevancy and visibility to this type of research.

So in summary, how do we improve Medicine and the delivery of healthcare? At all times, make it more relational, more personal, more healthy.

  3 comments for “Healthcare and the Human Experience

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