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Building a Better Health Care System: End of Life Care – A Case Study

She was 94 years old with advanced Alzheimer’s. She thought it was 1954 and asked if I wanted tea. Not a bad memory for someone in a hospital bed with a broken left hip.

She’d fallen at her assisted living facility. It was the second time in as many months. She’d broken her collarbone on the previous occasion.

Over the past year, she’d lost thirty pounds. This is natural in the progression of Alzheimer’s. But it’s upsetting to families all the same.

My patient was lucky. She’d lived to 94, and had supportive children who were involved in her care. Her son had long ago been designated as power-of-attorney for her health care. This meant officially that his decisions regarding her care were binding. She was not capable of making sound decisions, medical or otherwise.

The patient had been under the care of a geriatrician. His office chart told me that the option of hospice and palliative care had been discussed with the family. They were interested in learning more; the son had agreed that “Do Not Resuscitate” status was appropriate for his mother. Doing chest compressions on a frail 94 year-old is something none of us want to do.

The morning after her hospital admission for the broken hip, the medical intern called me with an ethical dilemma: “She’s DNR,” the intern explained. “She’s having intermittent VTach on the monitor, and I fear she won’t be stable enough to have the hip repaired. The family is open to the idea of hospice, but I don’t know whether to treat the arrhythmia or not.”

Elaine (not her real name) is one of our brightest interns. She’s thinking about going into geriatrics. Situations like this are in many ways the most meaningful for doctors. Too often we stress about minutiae at the expense of the big picture; helping guide a family and patient through a period of critical illness is of true service.

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Why Getting to a Digital Health Care System Is Going to Be Harder Than We Thought Ten Years Ago

A leading scientist once claimed that, with the relevant data and a large enough computer, he could “compute the organism” – meaning completely describe its anatomy, physiology, and behavior. Another legendary researcher asserted that, following capture of the relevant data, “we will know what it is to be human.” The breathless excitement of Sydney Brenner and Walter Gilbert —voiced more than a decade ago and captured by the skeptical Harvard geneticist Richard Lewontin [1]– was sparked by the sequencing of the human genome. Its echoes can be heard in the bold promises made for digital health today.

The human genome project, while an extraordinary technological accomplishment, has not translated easily into improved medicine nor unleashed a torrent of new cures. Perhaps the most successful “genomics” company, Millennium Pharmaceuticals, achieved lasting success not by virtue of the molecular cures they organically discovered, but by the more traditional pipeline they shrewdly acquired (notably via the purchase of LeukoSite, which ultimately yielded Campath and Velcade).

The enduring lesson of the genomics frenzy was succinctly captured by Brown and Goldstein, when they observed, “a gene sequence is not a drug.”

Flash forward to today: technologists, investors, providers, and policy makers all exalt the potential of digital health [2]. Like genomics, the big idea – or leap of faith — is that through the more complete collection and analysis of data, we’ll be able to essentially “compute” healthcare – to the point, some envision, where computers will become the care providers, and doctors will at best be customer service personnel, like the attendants at PepBoys, interfacing with libraries of software driven algorithms.

A measure of humility is in order. Just as a gene sequence is not a drug, information is not a cure. Getting there will take patience, persistence, money and aligned interests. The most successful innovators in digital health will see the promise of the technology, but also accept, embrace, and ideally leverage the ambiguity of disease, the variability of patients, and the complexities of clinical care.
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Health Reform: The Political Storms Are Far from Over

The history of president Obama’s health reform bears an uncanny and disturbing similarity to the life cycle of a hurricane. With Sandy fresh in our memory, the similarity is not comforting.

Hurricanes have three phases. The front wall of the storm brings high winds, lightening, and rain. Next, at the hurricane’s center, or eye, the wind drops and the air warms. If one is at sea, the water may turn calm and warm, bringing the illusion that the storm has ended. As the storm moves on, wind and rain return, often with increased force. Those fooled by the calm who leave safe havens may be destroyed by what follows.

The life cycle of a hurricane will bear an eerie similarity to that of health reform. Nearly four years elapsed between president Obama’s initial call for national health reform until the bill became law and the Supreme Court ruled on its constitutionality. The political and legal turmoil was intense and continuous. The process was rancorous and the outcome in doubt from start to finish. It took a bitterly fought presidential election to put an end to this phase of the struggle.

Now, we are in a period of relative calm. The 2012 election settled the immediate fate of the Affordable Care Act (ACA). The candidate who swore to repeal it lost. The ACA was the major domestic legislative achievement of the victorious incumbent president who won reelection. Now, eighteen states are in process of designing rules for health insurance exchanges — the administrative entities that will manage implementation of the new law, the most important provisions of which will take effect one year hence. The other states will either leave implementation entirely to the federal government or share administrative responsibilities with federal agencies.

A huge amount of work remains to be done by October 1, 2013 when people can begin enrolling for insurance coverage in the new exchanges.

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Advances In Cancer 2012

The 30,000 member American Society of Clinical Oncology is the world’s leading group of cancer physicians. ASCO is dedicated to curing cancer, supporting research, quality care, reducing treatment disparities and a heightened national focus on value. This month they released their annual Report on Progress Against Cancer, which highlights research, drug development and cancer care innovations.  This hundred-page document is important reading for anyone who wants to be up-to-date regarding cancer care.

Cancer related deaths in the United States are dropping, but still totaled 577,000 in 2012.  While world cancer research funding is rising, in the USA it continues to decrease, with the purchasing power of the largest funding source, the National Cancer Institute, having fallen 20% in the last decade, and a further 8% cut slated for January 1, 2013.   Development is dependent on government and private funding, as well as the willingness of more than 25,000 patients a year who volunteer to be involved in cancer trials.  All these critical supports are threatened. The Federal Clinical Trials Cooperative of the National Cancer Institute (FCLC, NCI) supports research at 3100 institutions in the USA.

The report discusses the many types of cancer which continue to be naturally resistant to cancer treatment, particularly chemotherapy.  In some cases, drugs do not penetrate a part of the body, such as the brain, in other cases even when they reach the tumor, they are not effective.  In such cancers the genetic code of the cancer cells has mutated (changed) such that the particular drug does not kill the cancer.  In 2012, there was increased interest in attacking each cancer cell at multiple targets either by using a single drug, which attacks in several different ways, or multiple drugs at the same time.  This concept improved cancer killing in GIST, colon cancer, certain lymphomas (ALCL) and medullary thyroid cancer.  In addition, unique targeted compounds, such as “tyrosine kinase inhibitors,” show increasing benefit in leukemia, sarcoma and breast cancer.

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What Does the Dartmouth Atlas Have to Say About the Politics of the ACA?

Healthcare reform was a frontline topic during the recent presidential elections. The political warfare and misleading information around the Patient Protection and Affordable Care Act (PPACA), also known as Obamacare, has prevented the public from understanding its intended purpose, and has left many skeptical about its benefits. It is safe to say the general public has little to no idea about the quality of healthcare delivery in their respective regions.

In fact, it is not a far cry to claim that even healthcare professionals might not truly understand the issues facing American healthcare. Thus, most of the public is generally uninformed or misinformed about the population level problems facing the healthcare system. Therefore, it is quite simple for political parties to misguide the public and capitalize on their uninformed perceptions. If the public knew more about the flaws present in the healthcare system, perhaps they would better realize the PPACA is a reasonable start at addressing the failings of our system.

The Dartmouth Atlas Project is an online database which collects Medicare spending and utilization data from around the country. Information gathered from the database has shown immense variation in the way medical resources are utilized by even similar regions, communities, and health care organization. Evidence has repeatedly shown that, from a population perspective, areas that spend more on medical care do not consistently benefit from increased quality of care or patient wellbeing. Variation in the type of care delivered can be attributed to diverse incidence and prevalence of disease severity or the type of care a well- informed patient chooses. Variation in health care delivery is thus omnipresent and expected, because every patient is unique and medical innovation presents a growing number of care options to choose from.

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Through a Scanner Darkly: Three Health Care Trends for 2013

As we anticipate a new year characterized by unprecedented interest in healthcare innovation, pay particular attention to the following three emerging tensions in the space.

Tension 1: Preventive Health vs Excessive Medicalization

A core tenet of medicine is that it’s better to prevent a disease (or at least catch it early) than to treat it after it has firmly taken hold.   This is the rationale for both our interest in screening exams (such as mammography) as well as the focus on risk factor reduction (e.g. treating high blood pressure and high cholesterol to prevent heart attacks).

The problem, however, is that intervention itself carries a risk, which is sometimes well-characterized (e.g. in the case of a low-dose aspirin for some patients with a history of heart disease) but more often incompletely understood.

As both Eric Topol and Nassim Taleb have argued, there’s a powerful tendency to underestimate the risk associated with interventions.  Topol, for example, has highlighted the potential risk of using statins to treat patients who have never had heart disease (i.e. primary prevention), a danger he worries may exceed the “relatively small benefit that can be derived.”  (Other cardiologists disagree – see this piece by colleague Matt Herper).

In his new book Antifragile, Taleb focuses extensively on iatrogenics, arguing “we should not take risks with near-healthy people” though he adds “we should take a lot, a lot more, with those deemed in danger.”

Both Topol and Taleb are right that we tend to underestimate iatrogenicity in general, and often fail to factor in the small but real possibility of potential harm.

At the same time, I also worry about external experts deciding categorically what sort of risk is or isn’t “worth it” for an individual patient – a particular problem in oncology, where it now seems  fashionable to declare the possibility of a few more months of life a marginal or insignificant benefit.

Even less dramatically, a treatment benefit that some might view as trivial (for hemorrhoids, say) might be life-altering for others.  For these sufferers, a theoretical risk that some (like Taleb) find prohibitive might be worth the likelihood of symptom relief.  Ideally, this decision would ultimately belong to patients, not experts asserting to act on patients’ behalf.

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Is In Car Health Monitoring the Answer? Maybe? Maybe Not So Much?

Patient monitoring outside the hospital has been a hot topic (and also a not so hot topic) for the past 15 years.

Starting back in the late 1990s with companies like Health Hero Network, a company whose products for patient home monitoring are still in use today, company after company has sought to bring a successful product to market. The holy grail: finding an easy, non-intrusive, and continuously reliable way to predict patients’ potentially serious medical problems when it is early enough to do something about them and prevent an acute and expensive episode of illness.  Some of the newer companies are focused more on the wellness and tracking side of the equation, such as helping individuals see progress from an exercise or other preventive/health-inducing regimen.

So far this whole area has been a very tough nut for businesses to crack in the US in particular.  While some studies have shown great positive effect, others have not.  Insurance payment for these programs has been spotty at best and non-existent at worst; most of the current vendors are stuck in pilot hell without significant long term and widespread commitments from payers.  There is a belief, veracity unknown as yet, that the proliferation of risk-based entities such as Accountable Care Organizations will change this and lead to broad adoption of ambulatory patient monitoring tools, angels will sing and a large number of hospitalizations and rehospitalizations will be avoided.  That may be true, but remains to be seen.

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(Not) Saving the Best For Last

A clever little study was published last month in the Archives of Internal Medicine, and it – plus the fact that I’ve just started a stint as ward attending – prompted me to think about the importance of managing a set of tasks in the hospital. In my quarter-century of mentoring residents and faculty, I can’t think of an area in which the gulf between what people should do and what they actually do is larger, nor one in which improving performance yields more tangible rewards.

In this blog, I’ll begin by reviewing the Archives study and then consider its lessons for time management, particularly on the wards. In my next post, I’ll describe – just in time for New Year’s resolutions – a little technique I’ve developed that has helped me and others complete tasks that feel overwhelmingly large.

In the Archives paper, a research team led by informatician Michael Cohen of the University of Michigan set out to tackle the “portfolio effect”: how to allocate scarce time when discussing multiple patients. Cohen’s team videotaped 23 end-of-week resident sign-outs of ICU patients; on average, 11 patients were signed out per session, and each session lasted about 27 minutes. The patients were reviewed in bed order, not based on severity of illness or anything less random than where they happened to be lying in the ICU. (In my experience, this location-based sequencing is the most common method of organizing sign-out; going in alphabetical order of patients’ last names is a close second.)

Try to guess which patients were discussed at most length by the residents. The sickest? The oldest? The youngest? Those with the most complex social issues? Patients who were potentially eligible for ICU discharge that day?

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Making Sense of the Electronic Health Record

At 5am, Mr. A rolls onto the medicine floor: the fifth and final new patient to be admitted that night. The 70-year-old is well-known to our institution from his near-monthly hospitalizations and his primary care doctor, cardiologist, podiatrist, ophthalmologist, and both of his endocrinologists all work in-house. Unfortunately, for the intern admitting him (and for Mr. A), this translates into a few hours-worth of prior blood test results, MRI reports, visit notes, and discharge summaries to peruse. Where to begin? How to find the key details buried in this hoard of information?

Electronic health records (EHRs) have brought to health care both a much-needed modernity and an emerging challenge: how do doctors manage the rapidly growing quantities of health records that we are responsible for reviewing and that (theoretically) help us take better care of our patients, so that we can extract critical information while spending more time with patients and less in front of a computer?
There is little question that electronic records trump the tree-killing alternative (eg. that Mark Twain autobiography-sized pile of faxed paper, one line of doctor-scrawl per page, documenting a patient’s stay at an outside facility). But even electronic records can become unwieldy in the form now used in most hospitals, including Mass General: clinical data organized by the date a note was written or a blood test was drawn. 

Sorting through such files as quickly and effectively as possible is a skill that we must pick up early in residency. But what if a computer program could make this easier and more foolproof by pulling out the information we needed when we needed it? The technical term for this is “clinical summarization.” It’s a still rare feature that is gaining traction.  Continue reading…

Is Russia ready for Health 2.0?

The Wikipedia article about health care in Russia starts like this: “Russia has more physicians, hospitals, and health care workers than almost any other country in the world on a per capita basis. However, since the collapse of the Soviet Union, the health of the Russian population has declined considerably as a result of social, economic, and lifestyle changes.”

The Russian health care system has been going through major changes to improve access and quality of delivery. Currently, health care expenditures account for roughly 4% of the GDP (vs. 15.2% in the US) and this number is projected to grow to 10-14% over the next few years. The reform that started in 2009 will continue through 2015. It is expected that about 40% of resources allocated to health care restructuring will be spend on improving infrastructures, including information technology.

Recently I was invited to be part of the conference “Health Plus Technology: Russia and Global Outlook,” jointly sponsored by the Skolkovo Foundation, Life Sciences Angel Network and viamedix. I was part of the opening panel on ‘Technology Intervention to Healthcare,’ which was trying to answer to the following questions: What is fueling the Health 2.0 movement — in the US and globally? What countries/regions are leading the way? And what are the factors and conditions of the industry’s acceleration? The Russian health care system could use a shot of Health 2.0, and so the underlying question was: Is Russia ready for a paradigm shift from top down to bottom up health care innovation? Is Russia ready for Health 2.0?

At the same time, answering a request to produce a Health 2.0 Russia CIS, I took this speaking engagement as an opportunity to meet a few important stakeholders and potential partners. The question ‘Is Russia for Health 2.0?’ took another meaning for me.

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