The Complex Reality of “Shared Decision Making” and Patient Autonomy

--By Marie Miller, Health Care Administrator & Personal Finance Professional

This author’s blog in the Yale Daily News posits some interesting things about how a patient and health care provider interact to come to a real decision that provides clarity for the patient and family and the provider alike.  

 (See the link:      http://yaledailynews.com/blog/2015/04/14/qa-ethical-persuasion-of-patients/ )

The author describes a few high level points regarding the, “ethics of persuading patients to pursue certain treatments and how physicians should navigate that tricky territory.”  The author is a PhD candidate who shared his thoughts on standard practice of decision-making in critical care, the power of framing information and how doctors should responsibly use that power. 

The balance of power in Shared Decision Making often lays in how well one party understands the facts, possibilities and repercussions of each potential path forward.

I am almost fully in line with what this researcher has to say.

In a skilled nursing facility, with transitional care capabilities, such as mine, labeled ‘sub-acute rehab’ as well as ‘long term care’ there are patients of varying ages, from early forties to over 100.

In managing this patient mix, one must learn to navigate the generational gap to be successful. In so doing, I have noticed certain qualities that the upper and lower ends of this spectrum share in common when it comes to the end-of-life discussion, in particular.

Furthermore, we have a ventilator unit in my facility, so end-of-life issues are constantly on my mind and necessarily part of my day to day job duties. I find that at the point of the admission process, where advanced directives are discussed as a matter of routine, a 90-something may be as indifferent to the conversation as a “young” (this term is obviously relative in the nursing home world) person. By indifferent I mean detached or so reluctant to think about the issue that they just want to move on and may more or less mentally shut-down. Because this is so reliably the case, I agree that physicians need to have a more direct hand in the decision making process.

It is indeed false to assume that patients and their families come in to the mix with predetermined values; I am constantly amazed at how often the exact opposite is true. “Young” patients or children of the elderly seem ignorant of the nature of end-of-life issues as well as the technical decisions involved in ventilator or feeding tube care. The elderly patients themselves are frequently past the point of making the decision or still in their generational stereotype of wanting the doctor to make the decisions (or allowing their children to do so).

Additionally, I concur with Dubov in his last statement about the presence of systematic failures in behavioral economics especially when linked so closely with emotions as in life and death health decisions.

I’ll give a brief example: a patient’s family made a split second (relatively) decision to put her on a ventilator though she had a living will stating her wishes were for no mechanical ventilation or artificial feeding. After many months of hoping for a miracle and going through the grieving process, they confronted the fact that she would not recover and put her on hospice. Hospice then used the living will as a means to justify decreasing her respiratory rate on the vent (without putting her in distress) and completely discontinuing the feeding tube (for legal reasons we are not cleared to just do an extubation at the facility). Though there was a system in place with the living will and prior physician/family discussions, it failed once the patient was incapable of communication and her family was faced with the immediate reality of losing their wife/mother.

This brings me to a final point about why doctors are in the best position to advise: a hospice marketer considered this example a “great success” because they were able to bring a vent patient on service without having to extubate at the ER then transport back to the facility (a logistical nightmare and big reason it is difficult to have vent patients on hospice). This meant having her linger for 11 days without nourishment.

Success, really? I don’t want this woman anywhere near my family at the time of our decision making process! I don’t feel comfortable with physicians directly making life/death decisions for their patients, especially given the lack of intimacy between a typical person and their physician and the monetary constraints already weighing on our system.  But at the end of the day, I can at least count on them having taken some course in ethics as well as I can hope that the Hippocratic Oath isn’t just a hollow recitation. We don’t have any hope for a functional, free, and fair healthcare system when the populace remains willfully ignorant about their choices. Until that root cause is addressed, physicians may be the best answer for an ethical outcome.  
 

Marie is health care and finance professional, working on the health care provider side in an administrative capacity. 

Rational Use of Antipsychotics in Long Term/ Sub-Acute Care or Even Home Care Depends on Your Perspective

 -----By Anna Shepherd, Health & Personal Finance Professional, Facility Asst Administrator

In a Wall Street Journal Blog published this past week, the feds are admonished for not doing more to help the elderly who are receiving too many antipsychotic drugs, whether they are in the nursing home or not.  See WSJ Blog

This is such a complex topic, but I believe it is telling that observers (whether they are GAO or HHS or others) believe that they can summarize and opine on a subject that requires 100% individualization.  Each case is unique and must be considered in its complete context.  And certainly, these drugs must be used at the lowest possible doses, especially in the elderly.

That said, I have a few issues with this story. It is accusatory to imply that having 61% of those diagnosed with dementia—and dangerous behaviors--on an antipsychotic is a bad thing. Dementia is a neurologic disorder and can trigger irrational and violent behavior on the level of schizophrenia. It is also a broad umbrella term that encapsulates many separate disorders—Lewy body, Alzheimer’s, Parkinson’s etc. One need go no further than an internet search to find hundreds of stories of disturbing violence in nursing homes among residents. The company I work for even experienced one such gruesome event this last fall. This is not to say that the nursing homes didn’t do their best to treat—or even that they did anything wrong. And it isn’t to say that lurking in every person with dementia is a homicidal maniac. But it does need to be said that nursing homes need to be allowed to treat the person as well as to keep the peace (remember we live in a highly litigious society).  Until the medical community knows more about the disease process of dementia and related disorders and can create new drugs to treat them, we’re left with finding the best fit from what is available.

I work in a sub-acute nursing facility and we frequently receive patients from the hospital who are medically stable (sometimes barely so) but who are undergoing such mental stress due to illness and rapid, drastic, changes in their health and overall quality of life that by the time they get to the nursing home setting they, frankly, may be on the verge of a psychotic episode—dementia or no. Another subset of these people may even have prescribed pysch meds (particularly something like Ambien) at home but are not continued on them while in the hospital. They may show up at the hospital with little ability to give a medical history or primary physician—if they have one to begin with. Thus, while they are in a very weak condition during their hospital stay, there may not be a need for these meds, but by the time they are in the nursing home and on the mend with therapy, they begin to lapse into whatever underlying mental condition they were once being medicated for.  The nursing home clinician must rationally deal with this scenario, and doing so may show up as a negative statistic for the nursing home, weighing against it as a negative metric for elderly people taking these tranquilizers.

Furthermore, upon admission of a new patient, our nursing staff often have no health history other than what the hospital discharge notes list as diagnoses; if included in this list is something like a ‘mood disorder’ or history of bipolar, then the first reaction by staff is to document any and every behavior and request orders for mood stabilizing drugs to bridge the individual’s transition into their rehab stay or long term care. I’m not saying this is right, but having one nurse in charge of 20 people means that a facility can only handle so many behavioral disruptions!  In this sense, staff education is most certainly warranted.

However, it must be said that in my building, most of the people who are on antipsychotics shortly after admission are tapered off of them at some point during their stay. This is how our medical director prefers to treat—and at the risk of sounding like a broken record--I think this is ultimately just another example of how our new health care system removes provider discretion in favor of uniformity and agreeable performance metrics. 

The needs of the individual patient and the other residents who are forced to live around them are often lost in translation!

 

High Deductibles & Patient Behaviors----Is There a Clear Benefit to the US Health Care System?

-----By Anna Shepherd, Health & Personal Finance Professional

As health care reform enters into its next year, many employees will notice that a side-effect of reform has made their employer shift a bigger portion of costs to them. Is that a good thing or a bad thing, in general?  See the linked article:  http://www.statesman.com/news/business/higher-health-insurance-deductibles-giving-workers/nhnB4/

It may depend on the employee or consumer himself and the motivations that cause human beings to do some things and avoid doing others. This high deductible scheme works ideally with an educated populace. I am a vociferous proponent of free market reforms in health care; certainly high deductible plans are step in the right direction. However, if there isn’t also an affordable intermediary such as a personal health-advisor, the result will inevitably be higher costs for more acute episodes. 

The old adage holds true that an ounce of prevention is worth a pound of cure.

Working in health care, it is sometimes difficult to remember that many people have little to no working knowledge of the industry or even basic human anatomy and health. I constantly have to remind myself that someone coming into my facility with a family member may know as much about healthcare as I know about carburetors! It will take time, possibly time this current system doesn’t have, for the patient population to become proactive and assume responsibility for knowledge of their health.

Maybe there is a bright side in that the younger, cash-strapped generation that demands information/services be accessible online and at low or no cost, can use sites like WebMD to avoid unnecessary trips to the doctor or ER. Over time, I’m optimistic that enough of a portion of the US population will invest the time to learn about their health needs and act as rational consumers, to provide a net gain to the system. The downside is that there is also a significant portion of the population who lack the ability to meaningfully use health resources by themselves. Further, this cohort is usually sicker and costlier to the system.

This brings me to my overall impression of the transition to high-deductible plans: it will ultimately be very burdensome to the system because there is effectively no market providing affordable and meaningful health consulting services to the populations that will most need them.  It will take too long to implement such services. Meanwhile those higher-risk people forego preventive services to save their money, costing the system more in the long run.

Anna is a health care and finance professional, working on the health care provider side in an administrative capacity. 

Shared Decision Making Requires Effort, Data, and a Proper Mindset

---Terri Bernacchi, PharmD, MBA,  Cambria Health Advisory Professionals, Senior Partner at Valiant Health, SME Systems

Patients (and their family members) frequently must make choices about treatment alternatives. In order to do this, they be able to weigh the benefits or risk of each option. The doctor may already hold a bias in terms of what needs to be done for a patient (surgery, medication, “watchful waiting”).  The doctor certainly holds the advantage in terms of his/her understanding of the disease, the options, and the power to enact a decision.  But often, the doctor is missing a vital piece of the puzzle: what the patient is really doing at home, what they want, what they fear, and what they can afford.  Without such insights, he or she cannot fully appreciate how the pain or disability is affecting the patient and family on a day-to-day basis. Nor does he understand how the disease is impacting a person’s spiritual and physical needs and wants.

If you believe that it is ultimately NOT the doctor’s decision, then you believe in “shared decision making” (SDM) and the patient’s choice in regard to what happens to him or her.  If there are any risks or ongoing pains involved in a treatment option, or if personal behaviors can make the outcome better or worse, it’s best that the patient appreciate them.

Shared decision making requires, above all, an open and honest communication between the patient, the family, and the doctor.  SDM requires EFFORT on the part of all parties; the doctors and nurses cannot do magic without the active involvement of the patient and family.  They need to be guided by DATA that (using the best information available at the time) assists them in calculating risks, rewards, and likelihoods of success for one option over another.  Last, SDM requires a fundamental shift in the patient’s and provider’s mindset.  If a patient expects that the doctor can simply make all the decisions and they can be passive in their own care, they will likely encounter the least favorable outcomes.

“Many Americans don't have enough information or education to make fully informed choices about healthy lifestyles, medical treatments or navigating the complex U.S. healthcare system. Poorly prepared patients can be overwhelmed by new information that follows a diagnosis. “When patients are in doctors' offices, they (might) hear 50% of what's being said and maybe their relative hears another 30%, but they walk away without 20%,” North Shore-LIJ's Vignola said.”  See:  Modern Healthcare Article,” Providers help patients address emotion, money, health literacy” by Melanie Evans.   http://www.modernhealthcare.com/article/20131210/INFO/312129978/channeling-choice-providers-help-patients-address-emotion-money
Clearly, the Institutes of Medicine and other governmental entities and academicians are starting to study the impact of SDM in health care.  More literature is coming out and the case for actively-involved patients is beginning to be better understood.  But it’s a long way till we arrive at the finish line.

Terri is a Senior Partner at Valiant Health, LLC, and founder of Cambria Health Advisory Professionals and a Managing Partner at Quo Magis partners.  The thoughts put forth on these postings are not necessarily reflective of the views of her employers or clients nor other Valiant Health colleagues. Terri has had a varied career in health related settings including: 9 years in a clinical hospital pharmacy setting, 3 years as a pharmaceutical sales rep serving government, wholesaler, managed markets and traditional physician sales, 3 years working for the executive team of an integrated health system working with physician practices, 4 years as the director of pharmacy for a large BCBS plan, 12 years of experience as founder and primary servant of a health technology company which was sold to IMS Health in late 2007.  She has both a BS and a PharmD in Pharmacy and an MBA. 

Using Technology to Help People with Personal Health Decisions

---Terri Bernacchi, PharmD, MBA,  Cambria Health Advisory Professionals, Senior Partner at Valiant Health, SME Systems

The internet has certainly brought to be the age of “information” which does not necessarily mean that people using the internet can make “informed decisions” about their medical care.  It simply pulls up TOO much content, some of which might be relevant to the individual and some of which may actually introduce confusion which could foster misadventures and wasted resources. 

The use of “Social Media” can help isolated patients feel connected to others with similar conditions or in similar predicaments, empowering them to make better medical decisions or provide their own ‘self-care’. Unfortunately, it can also introduce harm if people lack contextual insight to sift through facts versus fiction.

 

At this time, people have little direct access to most of their own health data, and may be handicapped with an inability to understand it, even if they had it.  Thus, futurists are clamoring to develop a platform that analyzes and integrates their information with other sources of data.  In the world they envision, patients will be more engaged and have access to their information via mobile applications, including access to their Electronic Health Records. 

When this happens, some of the way things are currently done and the balance of power in terms of decision making will shift, creating a very different health care interaction between patient and provider. 

In the future, for example, some envision that “we will see technology, artificial intelligence and predictive data analytics” incorporated as part of the decision-making process.  This disruptive “voice of the computer” may not be far off.  See the attached opinion piece.

http://searchhealthit.techtarget.com/opinion/Patient-interest-better-tech-will-lead-to-shared-decision-making

Terri is a Senior Partner at Valiant Health, LLC, and founder of Cambria Health Advisory Professionals and a Managing Partner at Quo Magis partners.  The thoughts put forth on these postings are not necessarily reflective of the views of her employers or clients nor other Valiant Health colleagues. Terri has had a varied career in health related settings including: 9 years in a clinical hospital pharmacy setting, 3 years as a pharmaceutical sales rep serving government, wholesaler, managed markets and traditional physician sales, 3 years working for the executive team of an integrated health system working with physician practices, 4 years as the director of pharmacy for a large BCBS plan, 12 years of experience as founder and primary servant of a health technology company which was sold to IMS Health in late 2007.  She has both a BS and a PharmD in Pharmacy and an MBA. 

 

Hospital Studies Blows Apparent Hole in Concept of Shared Decision Making Reducing Costs

---Terri Bernacchi, PharmD, MBA,  Cambria Health Advisory Professionals, Senior Partner at Valiant Health, Managing Partner at Quo Magis Partners

Answering an important question, “Does “SDM” (shared decision making) reduce cost?” was the focus of a study published by JAMA (see link below) that utilized a survey given to ~20,000 inpatients over 8 years at a single institution.  They concluded that while the classic SDM concept that engaging patients in their care can help control costs and reduce utilization, SDM can actually increase lengths of stay and inpatient spending.  Patients were asked to rank a preference for the statement, “I prefer to leave decisions about my care up to my doctor”.  Investigators drew inferences from this as to their interest in SDM and specifically reviewed an inpatient setting.  The survey data were linked with administrative data to find conclusive results.

They found that Length of Stay was longer (by 5%) and incurred cost was higher (by 6% or about $865) for people that were more inclined to want to be involved in their decision making process. One of the primary co-authors, Dr. David Melzer has been quoted by Modern Healthcare as attributing some of the lack of cost reduction to the fact that prospective payments in hospital environments already incentivize more careful resource use, and that SDM could actually increase costs. 

But not so fast here.  I think there may be a larger concern: conclusions about attitudes toward SDM using a generic question at the exact time a person is in an inpatient hospital setting is the exact wrong time to evaluate SDM.  The principles of SDM involve the patient as an equal in the process----much has been written in the literature about the power dynamic / power imbalance between doctor and patient.  This is the wrong time and the wrong way to measure its effectiveness. 

In the Modern Healthcare article (requires a subscription) Melzer goes on to muse that SDM should not be thought of within a framework of cost-control, which I agree with.  If the principles of SDM get misrepresented as one more way to ration resources or cut costs at the patient’s own expense, there will be no basis for trust (an essential ingredient in real SDM).  SDM will fail.  

(Link takes you to an abstract and not the full article:  http://archinte.jamanetwork.com/article.aspx?articleid=1691765 )

I wonder what a patient would think about whether or not their doctor would see any survey response that indicates they prefer NOT to leave decisions about their care to the Doctor.  In the inpatient setting, someone is making almost all decisions for you---from how much you can eat or drink to what tests are going to be done and when you can go home. 

The problem lies not with posing the question but with the way in which it was measured and the environment in which it was measured.  Better yet to have asked more nuanced questions BEFORE hospitalization ever occurs and gauge the avoidance of hospitalization and other procedures (and the associated cost savings) rather than the methodology of asking a patient at his /her most vulnerable time in the hospital. 

 Terri is a Senior Partner at Valiant Health, LLC, and founder of Cambria Health Advisory Professionals and a  Managing Partner at Quo Magis partners.  The thoughts put forth on these postings are not necessarily reflective of the views of her employers or clients nor other Valiant Health colleagues. Terri has had a varied career in health related settings including: 9 years in a clinical hospital pharmacy setting, 3 years as a pharmaceutical sales rep serving government, wholesaler, managed markets and traditional physician sales, 3 years working for the executive team of an integrated health system working with physician practices, 4 years as the director of pharmacy for a large BCBS plan, 12 years of experience as founder and primary servant of a health technology company which was sold to IMS Health in late 2007.  She has both a BS and a PharmD in Pharmacy and an MBA.Managing Partner at Quo Magis partners.  The thoughts put forth on these postings are not necessarily reflective of the views of her employers or clients nor other Valiant Health colleagues. Terri has had a varied career in health related settings including: 9 years in a clinical hospital pharmacy setting, 3 years as a pharmaceutical sales rep serving government, wholesaler, managed markets and traditional physician sales, 3 years working for the executive team of an integrated health system working with physician practices, 4 years as the director of pharmacy for a large BCBS plan, 12 years of experience as founder and primary servant of a health technology company which was sold to IMS Health in late 2007.  She has both a BS and a PharmD in Pharmacy and an MBA.
 

Shared Decision Making is the Key to Fixing Broken Health Care System

---Terri Bernacchi, PharmD, MBA,  Cambria Health Advisory Professionals, Senior Partner at Valiant Health, LLC & Managing Partner at Quo Magis Partners

Sometimes, it is just best to not “rephrase” or “critique” a perfectly honed message and to just let the message stand on its own merits.  I encourage you to read the linked article, slowly, and drink in the wisdom.  Note this is not about cost but about consequence and empowerment of the patient and family as equals in the health care process. 

• “One of the welcome shifts under way in medicine is the move towards “shared decision making,” where hubris and hierarchy give way to humility and equality. Part of a wider reshaping of the roles and responsibilities of patients and professionals, the shift is challenging the long held belief that doctors know best. Rather than experts who persuade, in the new model the professionals support people in making more informed decisions about their health. But what if we take this notion of a meeting of equals seriously? Could people help professionals to make more informed decisions?”

The author, Ray Moynihan, later in the piece cites the improvement that the patient gets from reassurances from a trusted doctor as he makes his decision.  One of the challenges in the current US healthcare system is the separation between the doctor and the patient in terms of who is going to decide what about the best course of action for any set of circumstances.  Clearly, the clinician is the expert but non-compliance with care is in the realm of 40 to 50%, so it is fair to say that person (often at his/her own hand) does not fully realize the benefits of the clinician’s expertise simply because they choose not to heed it. 

A frank and honest dialogue should begin with the very first meeting, where both the patient and the clinician set expectations and establish the rapport that becomes the basis for shared decision making.  One further complication to be discussed in future posts:  this takes TIME to do; under today’s health care reform environment, with pressures on reimbursements, it remains to be seen how this can occur unless the system will bear the cost burden associated with better dialogue.

Link:  http://www.bmj.com/content/346/bmj.f2789
 
Terri is a Senior Partner at Valiant Health, LLC, and founder of Cambria Health Advisory Professionals and a Managing Partner at Quo Magis partners.  The thoughts put forth on these postings are not necessarily reflective of the views of her employers or clients nor other Valiant Health colleagues. Terri has had a varied career in health related settings including: 9 years in a clinical hospital pharmacy setting, 3 years as a pharmaceutical sales rep serving government, wholesaler, managed markets and traditional physician sales, 3 years working for the executive team of an integrated health system working with physician practices, 4 years as the director of pharmacy for a large BCBS plan, 12 years of experience as founder and primary servant of a health technology company which was sold to IMS Health in late 2007.  She has both a BS and a PharmD in Pharmacy and an MBA.