Navigating Healthcare – Patient Safety and Personal Healthcare Management

Healthcare – Its Personal

The Great Healthcare Debate

Healthcare is personal and front and center in our minds not just because we all intersect with it in some way but it employs 1 in 9 people in the United States. With the current state of our media and political system with polarized debates, he said she said talking heads on the media, the echo chamber of social media and the 24/7/365 barrage of news and fake news it can be hard to see a pathway out of the quagmire we find ourselves in. But we all want to see that path. I just don’t believe that people get up in the morning wondering how they can decimate the healthcare services and the lives of their fellow human beings. We don’t get up out of bed every day wondering how best to punish people who may have made bad choices in their lives or who find themselves in unfortunate positions though geography (the zip code effect) or genetics. I know I don’t and I don’t think you do either.

Yet the stream of coverage and what we read, see and hear online and sometimes even in person suggests that this is the case. I can’t answer the reasons why but I’ve read a string of articles and reporting that variably suggests its always been like this to this is the fault – and then insert the name of your favorite whipping horse. Ultimately it does not matter – unless you believe that people wake up with malintent every morning it’s better to start with an understanding of the problem and then thinking about possible solutions and how we can apply them quickly and effectively

So Let’s Start with some of the fundamental problems in our healthcare system – to be clear we are not alone in the world. I have seen and heard from many others in different countries who are all struggling to varying degrees and with different focus and priorities the same issues. If I had to boil it down to one issue I would say

Limited Resources and the Prioritization of the Allocation of those resources

It’s a familiar equation to anyone trying to balance their budget or allocate their time. If you are like me you may find there are just not enough hours in the day for the task list you created in the morning and wishing either to stretch time (time dilation) or perhaps be able to turn time back with the Wizarding world’s  Time Turner. There are two basic options available – reduce the inputs or reduce the outputs. In the vernacular of budgeting – either spend less or make more money. Both may be viable and depend on personal circumstance but undoubtedly there will be easier and harder solutions. Ultimately we all have to make our own personal decisions – so one solution or size does not fit all.

Photo from jenga.com

It would be foolish to suggest that this covers all the complexity of the healthcare system as we all know healthcare is incredibly complex and always reminds me of the game Jenga.

 

This does not cover everything and there are many other elements in play but it is certainly a start and one that individuals and organizations can focus on to start to make incremental improvements.

As one Chinese proverb states:

Every journey starts with a single step

And turning that step into a habit is one of the best ways of setting a path to improvement.

Demand Side of Healthcare

This is the access and use of the system and the burden does not just fall on the individual. But it does start there as it is out personal choices to access and use available services that creates demand. Historically in the United States, the cost and payment of this access have been disassociated from the individual. When you visit the doctor or pharmacy you don’t pay the actual cost of the service – your insurance carrier does. Ultimately we do all pay for this through our insurance premiums and for many the contributions made on our behalf by our employer that is part of the compensation we receive for working for them but at the point of care, we are disconnected from the price and cost of a service.

Patient Accessing Care

To a varying degree individuals have some form of co-pay – a personal cost that is defined by the insurance coverage and is shifting increasingly to the individual under the new insurance plans called High Deductible Health Plans (HDHP). One of the intentions of this policy is to make the individual responsible for this cost in an attempt to influence behavior and decrease unnecessary access. But this comes with the inevitable unintended consequences with cost avoidance strategies by individuals who knowing they will be held responsible for the full cost of a visit, drug or test may elect to decline to have or use the service.

 

I’d count myself in that crowd having been on a HDHP plan for several years. I can point to several decision where I have declined tests, treatment and access to care because of the nature of my personal responsibility – I have an associated health savings account (HSA) which should cover the capped amount of cost for the year. But the crippling nature of potential costs associated with a catastrophic medical problem – a serious accident, cancer, heart attack are all so terrifying that I see the HSA as a buffer against the potential of medical insolvency that might result especially when you consider the impact on a family with one source of income that would be impacted by any medical disability.

 

Insurers Paying for Care

Insurers want to reduce their costs – and even the non-profits have to make money so are focused on the bottom line if they want to continue to serve their customers and population. So they look to find ways to reduce the unnecessary access to care imposing barriers and limits. There was a gate keeper concept that requires a referral letter from a primary care physician before you can access s specialist – that service by the way costing you additional fees to see the primary care provider. There are formulary requirements that exclude certain drugs from coverage and attempts to limit access to specific doctors and networks to strengthen the buying and negotiation power of the payor with the providers in the system.

 

Providers Delivering Care

On the provider side the clinal professionals delivering the care all arrived at this point having selected the expensive assault course of education to train and qualify to be able to deliver care. For doctors, it’s persistence and endurance that win out. The barriers to entry are high and tied to economics. They all have the same desire to help patients – but economics and the burden of the educational system can overwhelm just about anyone and they have bills to pay both for their education but also the infrastructure they must use to be able to both deliver care but also bill and be paid for delivering. They want to reduce their overhead and spend as much of their time and resources on the delivery of care but to survive in the system must allocate significant amounts of money to non-clinal systems and activities. Estimates of these costs suggest that at least 30% of the healthcare costs we as a society pay in the United States are tied to administrative and billing functions. The data’s still lagging but projections for 2016 put the total healthcare bill at $3.207 Trillion (thats $3,207,000,000,000 or more than $10,000 per person in the USA)

Healthcare Administrative Cost: $962 Billion Dollars

$962,100,000,000

 

Reconciling the Differences

Credit Imgur

The difference of opinion often centers on what is unnecessary – in the eyes of the patient they need and want the care they think is appropriate to them. Some of this is fed by a constant stream of information that even for an well informed clinically experienced specialist can be difficult to comprehend and make informed decision. We want wants best for our personal health and the health of our family and loved ones. But sometimes what the patient may think is best may not be – a great example is the steady stream of requests for antibiotics for treatments of minor infections. Not every sore throat or cough demands the use of antibiotics and in fact, in many cases, their use is damaging as we face a future where this line of defense is increasingly being overrun with smartly adaptive bacteria who develop resistance with terrifying speed.

 

Payors Perspectives

The same is true of payor and insurers – they face a rising tide of costs associated with care that is increasingly complicated and expensive and struggle to balance their budget.Faced with one patient who’s costs for treatment might be hundreds of thousands of dollars or more so they limit or decline this in favor of treating multiple other patients where their cost of treatment is thousands of dollars or less? The utopian answer is treat everyone but we they like each of us do not have unlimited budget or resources and have to make hard decisions. And the problem with healthcare fundedfor the population but access individually.

 

Healthcare is funded for the population but access individually

 

Clinicians Perspectives

Clinicians also have a view on what’s appropriate – and the vast majority act with total integrity (I would like to say all of them but sadly there are occasional stories of clinicians and healthcare professionals who game the system – sometimes with simple prescription based fraud or other times over treatment of stenting in cardiac cases). Sadly for a profession that is so dependent on trust the rare cases of fraud and abuse unfairly tar everyone with the same brush. As I said above – I believe everyone gets up in the morning with the best intentions and this is true of the clinal professionals who each and every day battle a system to deliver the care and compassion they set out to deliver when they took the path into healthcare. They want to say no to unnecessary treatment but the personal pressures applied and the underlying compassion and the innate drive that was the foundation of why they entered the profession can influence them to order and prescribe because they are unable to explain the lack of value and offering this option makes their patient happier and comfortable.

So how do we reconcile these differing opinions

 

Economics and Making Choices

Which path is best

There’s a sad fact in the US healthcare system – we do not talk about cost effectiveness. Its not just a taboo subject but also a forbidden topic, As Aaron Carroll (The Incidental Economist) noted in his piece Forbidden Topic in Health Policy Debate: Cost Effectiveness we avoid talking about cost-effectiveness in the United States.

Some think that discussing cost effectiveness puts us on the slippery slope to rationing, or even “death panels.”

As he points out – if there was a pill available that could extend your life by one day but costs a billion dollars, most would accept this as an unacceptable trade off and decline it. But that’ extreme – as you decrease the cost where does that line become blurred?

what’s to stop us from deciding that spending a couple hundred thousand dollars to extend grandma’s life for a year isn’t worth it either?

More troubling is the shackles that have been placed on the Patient Centered Outcomes Research Institute – who were founded but explicitly prohibited it from funding any cost-effectiveness research at all! How can an outcomes institute assess healthcare if cost effectiveness is not part of the equation?

“We don’t consider cost effectiveness to be an outcome of direct importance to patients.”

In fact, we in the United States are so averse to the idea of cost effectiveness that when the Patient Centered Outcomes Research Institute, the body specifically set up to do comparative effectiveness research, was founded, the law explicitly prohibited it from funding any cost-effectiveness research at all. As it says on its website,

PCORI was established to fund research that can help patients and those who care for them make better-informed decisions about the healthcare choices they face every day, guided by those who will use that information.

 

Quality-Adjusted Life Years

As he points out there is actually a fairly robust strategy and measure that can offer insights into the value of measuring health outcomes – QALY’s (Quality-Adjusted Life Years) which the National Health Service has been using fro some time in the National Institute for Health and Care Excellence (NICE) that provides guidance, advice, quality standards and information services for health, public health and social care. Also contains resources to help maximise use of evidence and guidance. There is no doubt they are imperfect but very little in life is perfect and perfection should not be a barrier to progress. The use of this is not a sole determinant – but offers some measure of science and data to making what are incredibly difficult tdecisions

So in the current debate of what health system we need to put in place I would advocate the inclusion of cost effectiveness as one of the factors that must be considered and the QALY and perhaps even the Incremental cost-effectiveness ratio (ICER) as part of this difficult discussion.

I’m all about incremental changes and while including a cost effectiveness as a measure may seem a bigger stretch I feel it is a smaller step in the right direction. Can we achieve this? Is there a better incremental step we can take to resolve the challenges of our healthcare system? Leave your thoughts below.

Healthcare – Its Personal was originally published on Dr Nick – The Incrementalist

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Doctors and Patients – Who Knows Best

The Power of Knowledge

Life has changed and access to information is no longer the definition of value – we have seen these changes in the past as far back as 1494 when the printing press was introduced making books and knowledge more widely available:

Fear of the New Techno Panic TImeline

And proceeds through newspapers, the steam engine, photography and the death of painting, the telegraph, movies and the death of theaters, the telephone, phonograph, radio, television, computers and the internet and if anything the speed of change is accelerating. So too in medicine have things changed with a shift away from paternalistic experts to wide knowledge access and cooperative systems of healthcare delivery.

The Sorry State of Medicine

But the physician is still a key part of healthcare delivery and for many in the profession there is a sense of despondency and even despair with profession and their ability to deliver the care they aspire to deliver each and every day.  This recent piece in the Wall Street Journal Why Doctors Are Sick of Their Profession captured the spirit – only 6% of doctors surveyed describe their morale as positive and that’s not just bad for the doctors – its bad for patients too.

The sad part is we chose medicine because we thought it was worthwhile and noble, but from what I have seen in my short career, it is a charade

Running out of Time - Walking Gallery Jacket
Running out of Time – Walking Gallery Jacket

Physician suicide remains high with doctors the most likely to commit suicide with a rate of 1.87 times that of the average population (the US alone loses ~400 physicians to suicide per year) and their “success” measured as a completion rate is far higher than the general population (x 1.45.5).

 

As this piece The Painful Truth: Physicians Are Not Invincible highlighted (South Med J. 2000;93(10) ):

Physicians fulfill a special role within our society. While they are given many privileges and rewards, they also carry serious responsibilities. Physicians are expected to be healers, available to others whenever a crisis occurs or a medical need arises. They are expected to have unfailing expertise and competence, to be compassionate and concerned, and to provide universally successful care in a cost-effective manner. Such idealized expectations emanate from patients, from families, from society (including payers and regulatory and accreditation agencies), and from within the profession of medicine itself. Self-imposed expectations inhere in the institutions of medicine — medical colleges, clinics, hospitals, professional associations, and collegial relationships — and are internalized by students of medicine as they are socialized to become practicing professionals. These expectations become a part of how physicians define themselves.

So when I came across a picture of this mug:

Dont Confuse Google with Medical Degree

I posted it to my social media feed with a commentary

I wanted to highlight that clinicians are still an essential part of the healthcare system and their contributions are valued. This mug captured a strength of feeling that caught me by surprise.

It is available for purchase from a British eBay store and has been subject to several posts including this one from ePatient Dave – here and here and plenty of likes, dislikes, tweets, and even some fairly hefty criticism including one comment about starting a holy war.

Doctors Under Siege

I know many of my colleagues feel besieged. The system has drained every last ounce of empathy and compassion out of many with overhead requirements that detract from direct patient care and turn highly qualified, talented and well intentioned clinicians into data entry clerks and automatons. I have always believed and still do that every clinician gets up in the morning with all the best intentions to deliver high quality, compassionate car. There may be a small percentage of individuals who do not but  if they exist are a tiny minority.

We selected the career because we care. We selected the career because we want to offer support and compassion to our fellow human beings. We get our reward from these actions and there is no replacing the privilege of the trust that is placed in our hands in a personal and intimate relationship with our patients.

To get into medical school required an incredible climb up an academic mountain that was littered with others who did not make it. The experience tends to reinforce the sense of importance and verges on narcissism for some as the course and hurdles demand a level of self confidence in our own skills and knowledge. It is little wonder that what emerges from the medical school sausage machine can appear devoid of compassion, over confidant and unwelcoming of other opinions. It is any wonder that there is any compassion left by the time a doctor emerges with his degree and board certification – and that’s before he steps into a the healthcare quagmire and finds himself unprepared for healthcare as it is delivered today.

But many patients and patient advocates perceived this negatively and as an affront to their place in participatory care. The perception from patients appeared negative and there were multiple reports of patients who had been blocked when bringing information to their doctor and Dave even cites the sad instance in the UK  of the 19 year old girl who had fibrolamellar hepatocellular carcinoma (a rare cancer that with ~200 cases diagnosed worldwide annually) that was treated and then returned. Despite her pleadings to the contrary the Hospital and clinical team refused to believe her and told her to “stop googling”

There were even a few physicians who saw this mug negatively – as Bryan Vartabedian a pediatrician at Baylor  said:

and he posted this piece “Doctors and the Google Threat“. I don’t disagree with him that information access brings huge value and makes healthcare more accessible to a wider population but the systems in place don’t support the time aspect that this new sometimes unfiltered and unscientific data brings to many of the clinicians I talk to. One of the main challenges with this was captured by one friend who said:

You came in to see me with 9 minutes of reading material but I only have 7 minutes of time to care for you

And James Legan said:

And the deluge of information that arrives on everyone’s phone is replete with snake oil and pseudo science oftentimes amplified by celebrities who’s impact with their millions of followers can be incredibly damaging to individuals health.

Dave did take a constructive approach to the participation of patients

I personally am completely opposed to a patient going in and saying “I’ve decided I have condition X, and I want you to prescribe 42mg QID of medication Y.” I mean, have you ever seen the things medical students have to learn to get their license?? But I’m all in favor of a patient saying, “I have symptoms A and B, and from what I can tell from websites J and Q, that sounds like it could be M.” Explain your thinking, identify your source, and try to solve the diagnostic puzzle together: Collaborate.

While there are still doctors who see this as a challenge to the traditional model of care and the paternalistic distribution of knowledge and care, most do not.  I leave it with these two tweets that for me captured the underlying spirit I felt when I posted the original image:

and this one

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Everyone on the Same Side

Most physicians say the best part of their jobs is taking care of people – its the human moments, the taking care of people that make our jobs so satisfying. We are all on the same side – the structure of  the  system forces behavior that is not always ideal but despite this physicians do want participatory interactions – we love patients, especially ones that are engaged in their own health and care and we do not (and cannot) know everything.

You may well bring information to us that we are not aware of or have not read or heard about and we hope there will be enough time and opportunity to review this and help include scientific knowledge, no matter the source, in our review and guidance on the best course of treatment for you.

Doctors and Patients – Who Knows Best was originally published on DrNic1

Calling Doctor Data

With a nod to Star Trek, Bones, Data and even the Holo Doctor

Much of medical practice is as much a mystery to doctors as it is to patients.

Human physiology is so complex, and the external variables so numerous, that we often have no sure knowledge of why one patient did well or another patient didn’t. Every physician longs for some way to really know what will work for each patient.

While we have come a long way, even in just the past five years, there is still so much left to be learned. The one thing that can help us reach greater knowledge faster is data and analytics.
That’s really the underlying value of electronic medical records: they represent a treasure trove of data waiting to be mined. With the right algorithms, we can use that data to find patterns that tell us what factors make a tangible difference in outcomes. It’s the wisdom of the ages waiting to be read.

Perhaps the most valuable medical team member of the future will be a data scientist. These are the experts who understand how to tag and mine data and how to construct algorithms that find patterns accurately and can help us be more effective in delivering the best possible care every time.

For example, there is a great study from the University of Iowa Medical Center, in which gastroenterology surgeons are using real-time patient data in the operating room, combined with past data from gastric surgery patients, to predict who is at risk for developing a surgical site infection. This helps guide decisions in the OR as well as post-surgical care. While doctors know that a variety of modalities can reduce infection risk and promote healing, resources are not endless. By identifying patients who need high-level care, they can ensure that resources are targeted where they are needed most. The project has reduced surgical site infections by more than 50 percent in the gastroenterology patients whose care was guided by the analytics.

So Dr. Data (as New York Times writer Steve Lohr calls one data scientist) is saving lives, even without a medical degree.

 

How do we know the predictions are accurate?

But here’s the catch: we’ve got to get the algorithms right. If we aren’t careful, we can draw conclusions that aren’t really there. To make giant leaps forward in understanding, we need a colleague on the case who really understands how to create algorithms that have practical value and accurate results.

Tom Hill, a colleague of mine at Dell, recently wrote a blog in which he noted the necessity of using a systematic, transparent approach to predictive analytics. “Harvesting big data carries with it the responsibility to do-the-right-thing with those data. Big or any data and predictive models in healthcare must be correct, access and tamper-proof (secure), must not discriminate, generally do-good, and not-do-any-harm.”

He goes on to talk about the need for transparency in analytics, so that those using the results understand what data is being used and how it is being analyzed. As changes or improvements are made, they must be documented, so that the transparency lives on.

I think this is a critical point for physicians who will be using the algorithms in the future. If our patients’ lives will depend on the quality of the analytics used to guide treatment decisions, we need to know that the algorithms are correct. We don’t want a black box that dispenses treatment prescriptions; instead, we want to know how the results are created, so that we can trust the advice offered and help guide future improvements.

Adopting analytics in ways that don’t risk lives

Dr. Hill’s point about “not doing harm” is well taken. As healthcare organizations add analytics to patient care, projects like the one at the University of Iowa is a good place to start. It takes a body of existing knowledge about a large population of gastroenterology surgical patients and analyzes what factors were associated with certain outcomes. It then takes that analysis and compares it to a specific patient, providing insight into how that patient may do in post-surgical care.


The likelihood of a result that harms a patient is small. At worst, a patient might receive more care than is really necessary, or might not be recommended for care that would help. But that happens all the time without any analytics intervention, so the risk to patients is not increased by using the insights from the analytics. And the care team can monitor to see that, if the patient needs more extensive post-surgical care, that care can be ordered.
Other initial analytics projects in healthcare are looking at ways to predict surges in demand for care, based on environmental factors, and those projects also aren’t likely to put patients in harm’s way.

These kinds of project allow an organization to use analytics for practical improvements, while also learning how to use these new insights. As the organization’s expertise grows, the complexity of the analytics projects will likely grow, too. But starting with a project of limited scope and low risk for patient harm is a smart idea.
It’s also a way to help build trust. Physicians may be somewhat leery of trusting an analytics program to help them make treatment decisions, especially if a recommendation flies in the face of what that doctor’s always done in the past. So institutions must be careful to build trust in analytics as they move forward. As physicians see the effectiveness of using these tools, they’ll be more willing to engage in analytics themselves. So how, when and why you use analytics really matters. And making sure that you’re working with a really good Dr. Data is important, because at least for the foreseeable future, medical practitioners will be working very closely with Dr. Data to make analytics a powerful force for good.

 

This piece originally appeared in Beckers Hospital Review: Calling Dr. Data: A new consultant is set to make medical care more effective

Calling Doctor Data was originally published on DrNic1

We Must All be Engaged in the Design, Delivery, and Re-imagination of Healthcare

Previously posted on HITConsultant

On a recent flight, I had my headphones on and the Rolling Stones’ “Satisfaction”

began to play.

It’s a song I have heard hundreds of times over the years, but I was struck by the difference listening to it with headphones made. With no distractions, I noticed the bass line, in time with the percussion, provides the perfect offset to Mick Jagger’s distinctively strained voice. It was a completely different experience than hearing the track play in the background of a movie or while at a restaurant. Being fully-immersed and listening only to that song allowed me to pick out and appreciate subtle details I had never noticed previously. It’s no surprise that things sound differently when you’re able to concentrate your full attention on what is being said, but as I was sitting there, I became acutely aware of the function headphones serve—they enable the wearer to listen, blocking out distractions.

That is exactly what we are seeking in healthcare and it has proven to be difficult to achieve – in part because of pace, complexity of care, and technology. For centuries, physicians have listened to their patients and relied on their senses— their powers of observation— and matched these insights with clinical experience to heal. Clinicians need to be able to listen and concentrate on what their patient is telling them and noticing those distinctive symptoms he or she may be exhibiting. As Sir William Osler

famously advised:

“Listen to your patient, he is telling you the diagnosis.”

Being able to dedicate your undivided attention to anything these days is a rarity, but in healthcare, it is a crucial but frequently missing element. The last thing you want to feel when you are at your most vulnerable is that your physician is multi-tasking. Patient satisfaction scores will suffer, but more concerning are the clinical risks and missed opportunities of distracted physicians.

Distracted clinicians are the result of what Dr. Steven Stack of the American Medical Association refers to as an “over-designed” health IT system.” In a recent discussion with industry leaders, he explained that we seem to have become victims of our own ambition. We have devised structures that don’t work for everyone and policies that create very real, very expensive consequences for those who don’t abide. And this has left physicians stretched too thin, trying to do more in less time without any direct impact on improving their ability to care for their patients.

So, maybe it’s time we scale back. Dr. John Halamka, CIO of Beth Israel Deaconess Medical Center and co-chair of the nation HIT Standards Committee, noted that while we are in this period of transition and growth, we need to focus on parsimony, or determining the smallest number of moving parts that need to be adjusted in order to create seamlessness in HIT. Quite simply put, while the cart has been upset, there is no reason to trample all over the apples.

The MIT Technology Review recently interviewed Sarah Lewis, a doctoral candidate at Yale, about her recent book that explores how different unlikely circumstances or paths, like failure, have often spurred innovation. Citing creative geniuses such as Cezanne and Beethoven to Nobel laureates, she defines failure as the gap between where one is and where one would like to be. Confronting this gap, she asserts, is important because it “lets people go deep with their failure while letting it be an entrepreneurial endeavor if they like, or an innovative discovery.” We, in health IT, are currently at that gap where there is a disparity between where we are and where we would like to be.

The recent ICD-10 delay has provided the perfect opportunity for us to find Halamka’s parsimony, leveraging solutions that work for physicians and creating consistency and impact wherever possible. Like medicine itself, there will be no one perfect solution for every physician or organization, but we need to begin finding things that work – from re-skinning EHRs with easy to use tools like single sign-on or mobility to systems that respond to voice, touch or swipe to improve the experience for clinicians and patients. We need to start thinking of health IT more like headphones, coming in different styles to suit preferences, but providing the same function of reducing distraction and enabling the clinician to focus on the inflections in their patients’ voices, and truly hearing what is being said.

As Mick Jagger poignantly remarked, “The past is a great place and I don’t want to erase it … but I don’t want to be its prisoner, either.” We have accomplished a lot, but it is time to learn from the past and break free from what isn’t working. I think we can get health IT satisfaction (despite what the song says), but to do so we must all be engaged in the design, delivery, and re-imagination of healthcare and its intersection with technology. This truly is the art of medicine and we are all virtuosos contributing to the next masterpiece of healthcare.

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Giving Personal Health Advice to Family and Friends

In an interesting post on the medscape site (subscription/registration probably required): The Pitfalls of Giving Free Advice to Family and FriendsShelly Reese described some of the challenges of giving medical advice

to friends and family (even if you are a wannabe Dr Phil).

As she puts it the path can sometimes lead to challenging areas of ethics and professional boundaries.

How do you address or deflect such requests? Unfortunately, there are no easy answers. It depends a lot on you, your boundaries, and the situation.

And she links to the AMA Guidelines

The American Medical Association (AMA) Code of Medical Ethics is clear, however: “Physicians generally should not treat themselves or members of their immediate families.”[1] The statement goes on to provide an extensive list of good reasons why, including personal feelings that may unduly influence medical judgment, difficulty discussing sensitive topics during a medical history, and concerns over patient autonomy (Ref: American Medical Association. Code of Medical Ethics Opinion 8.19: Self-treatment or treatment of immediate family members. Issued June 1993.)

Some of the challenges of simple advice include

  • Escalation to more complex or persistent advice 
  • Long distance diagnosis with missing data
  • Lack of Doctor/Patient relationship and documentation
  • Litigation
  • Impaired judgement 
  • Changing and coloring of relationships

In one section she describes the challenges of dealing with family members and says

“I try not to give too much medical advice, even to my parents. I see my role as an advocate: to help them synthesize information when they have questions. When my mother calls and says, ‘I’m short of breath and I don’t know what to do,’ I walk her through all the things her doctor has talked to her about: Have you taken your blood pressure and pulse? Do you know how many times you’re breathing per minute?”

Good advice on being the patient advocate and healthcare manager for your family members (which many already are) In the end it boils down to personal judgement and your own boundaries.

Questions are appropriate and to be expected, Caplan says, but doctors have to wrestle with themselves in determining how to respond if they’re to act responsibly and ethically. “When close friends and family ask for medical advice, that’s always a matter for introspection, and at the end of the day, it’s not resolved by codes of ethics but by considered individual judgments.”

It used to be as the trusted source of knowledge where access to information was limited this was a significant responsibility but with the age of

and medical applications like AskMD, iTriage and HealthTap to mention a few you might find there is fewer and fewer requests. So for those of you that like the opportunity to help others out…enjoy it while you can mHealth and Telemedicine may be changing the landscape and soon!

Thanksgiving, Decency and End of Life – Be Thankful you had the conversation now #health

Patients deserve the same standard and car that doctors receive when they need treatment. But as I have said before (Doctors Die Differently and more recently Treatment Creep in Medicine – sucking Decency out of Patients) we remain challenged especially when it comes to dying.

This piece by Dan Gorenstein, How Doctors Die: Showing Others the Way touched on these issues in a moving a thoughtful way.

Dr. Elizabeth D. McKinley’s battled breast cancer for 17 years but this past spring discovered the cancer had spread to her liver, lungs and brain. Her choice was to undergo more treatment that would have potentially debilitating and mind altering effects on her or change course, accept death and work on getting the best out of what was left of her life…as she put it

..time with her husband, a radiologist, and their two college-age children, and another summer to soak her feet in the Atlantic Ocean…“a little more time being me and not being somebody else.” 

And some of her fight was with her own family – the non-medical members

clinging to the promise of medicine as limitless

And the medical members of her family (her husband is a radiologist)

looking at her disease as doctors, who know the limits of medicine

Its not a difference in the effects of disease and death but rather an advantage of knowledge and information that lead to truly informed decisions “doctors have control over their quality of life before they die and this sadly is control that eludes most other members of society” and it would appear especially try here in the USA. More than half of deaths take place in hospital and not at home surrounded by people we love which is the way most say they want to “go”.

So if you do nothing else this Thanksgiving – take the time to talk about the subject with the people you love and create and advance directive or living will. In many respects no better way to be thankful than to set out what is important and let everyone know, now when you are fit and healthy.

Wishing you all a very happy family and friend fill Thanksgiving

Treatment Creep in Medicine – sucking Decency out of Patients

This recent post on the Atlantic: How CPR Became So Popular reminded me of a piece I wrote some time back – Doctors Die Differently. As I said then:

Its not that doctors don’t want to die, its just that they knwo they know enough about modern medicine to know its limits, importantly they have talked about this with their families as they want to be sure that no heroic measures will be used during their last moments in this reality

And the chart demonstrating the big discrepancy between what doctors want in life saving measures vs the general public pretty much said it all

So this piece in the Atlantic took it a step further – tracing the history of CPR from the 1960 at Johns Hopkins where the surgeons had

…successfully resuscitated every one of the first 20 patients they treated, 14 of whom (70 percent) survived without brain damage or other ill effects

But their source patients were not typical (young and mostly healthy) and when you extrapolate that out to an elderly population survival can fall to as low as 0% a variation in the effectiveness when performed in the real world
But it was Hollywood adn the media that pushed these procedures into the general awareness suggesting

…that two-thirds of all (fictional) cardiac arrests portrayed on ER (and other doctor shows) involved young patients who had suffered rare events like drowning or lightning strikes, rather than old people with heart disease (who account for 90 percent of cardiac arrests in real-life settings…..most of these fictional TV patients did well, unlike the vast majority of CPR recipients in real life

Dr Peter Benton was well known as all in life saving heroics

In fairness Hollywood was dramatizing some real life events – and they applied their pixie dust to this as they have to many other things.

But the problem remains and health care professionals need to help their patients understand their disease and make good choices, bearing in mind that heroics and life saving may well be a significant driver as it was for Stephen Jay Gould who was diagnosed with a rare and deadly cancer with a median survival of eight months…but as he said in his essay “The Median Isn’t the Message“.

this median survival means that one-half of patients die within eight months but the other half live longer. Most important, because the mesothelioma survival curve has a very long “tail,” a few lucky patients will live a lot longer

In his case his experimental treatment may have contributed to his 20 year survival past the original diagnosis…leaving a legacy of hope.

Interview from #Health2Con with @DocWeighsIn on #speechrecognition #HealthIT #NLP and beyond

Loved spending time with Dr Pat Salber (@DocWeighsIn) from the Health 2.0 conference that took place a couple of weeks ago

I had the privilege of watching her in action as she blended social media with the sessions at Health 2.0 and tweeted a picture of her in action

We spent some time afterwards talking about innovation in HealthIT and documentation on subjects as wide and varied as Florence and INtelligent assistants through Speech Recognition and Natural Language Processing (NLP) or Clinical Language Understanding (CLU):

Science, Evidence and Clinical Practice

A recent article on the The Difference between Science and Technology in Birth on the AMA site demonstrates the challenges we still face in getting clicnal practice influenced by science and data. Studies and data may show the path for best clinical practice but as the authors note there are multiple instances of the clinical community – in this case the OBGYN – either knowingly or unknowingly failing to follow the best practices

For deliveries in the US evidence tells us that fetal monitoring in low risk pregnancies has a deleterious effect – yet it remains standard practice in most settings to place external scalp electrodes and intrauterine pressure catheters

Although we still see external continuous fetal monitoring employed in many low-risk pregnancies, “as a routine practice [it] does not decrease neonatal morbidity or mortality compared with intermittent auscultation…. Despite an absence of clinical trial evidence, it is standard practice in most settings to place internal scalp electrodes and intrauterine pressure catheters when there is concern for fetal well-being demonstrated on external monitoring” [3].

 

They list several other standard practices including

  • routing episitomy
  • Use of Doula’s
  • Challenges with Epidurals

Reasons for these behaviors are varied but as the authors state:

Many well-intentioned obstetricians still employ technological interventions that are scientifically unsupported or that run counter to the evidence of what is safest for mother and child. They do so not because a well-informed pregnant woman has indicated that her values contradict what is scientifically supported, a situation that might justify a failure to follow the evidence. They do so out of tradition, fear, and the (false) assumption that doing something is usually better than doing nothing

Until we fix these basic issues there seems limited opportunity to implement intelligent medicine and real evidence or science based practices.

 

Doctors Die Differently

It was this podcast, “The Bitter End

From the awesome radio show radiolab that covered a topic that people are often reluctant to discuss but is an important part of our reality…as they say there are few things in life but birth death (and taxes) are at the top of the list.

The piece included a review from the Johns Hopkins (Study of a LifeTime) of people’s desires when it comes to life saving treatments especially as it relates to end of life:

Preferences of physician-participants for treatment given a scenario of irreversible brain injury without terminal illness. Percentage of physicians shown on the vertical axis. For cardiopulmonary resuscitation (CPR), surgery, and invasive diagnostic testing, no choice for a trial of treatment was given. Data from the Johns Hopkins Precursors Study, 1998. Courtesy of Joseph Gallo, “Life-Sustaining Treatments: What Do Physicians Want and Do They Express Their Wishes to Others?”

For some simple questions such as:

  • Would you want CPR administered
  • Would you want Artifical Ventilation administered
  • Would you want Dialysis administered
  • Would you want a Feeding Tube used

Physicians were fairly uniform with 80% declining all of the above therapies. The only question that physicians were uniformly in favor of was the administration of pain medication.

But ask the same question of the general public and the numbers are reversed on every therapy (except pain management where there is agreement)

Its not that doctors don’t want to die, its just that they knwo they know enough about modern medicine to know its limits, importantly they have talked about this with their families as they want to be sure that no heroic measures will be used during their last moments in this reality.

In this excellent piece: “How Doctors Die; It’s Not Like the Rest of Us, But It Should Be” Ken Murray elegantly discusses this discrepancy

The challenge is clear and effective communication on a topic that we are reluctant to take on:

It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.

My personal technique when I was practicing was to use the benchmark of my own family. Depending on the age fo the patient I would ask myself the questions:

What would I do if this was my <insert name of close family relative>

So:

What would I do if this was my son/daughter
What would I do if this was my spouse
What would I do if this was my mother/father/brother/sister
What would I do if this was my grandfather/grandmother

It may seem simple but it worked for me, and still does. The principle applies with general discussions between family members and realtives.

I knwo this seems morose and depressing but remember death is not alwasy the worst case scenario.