An Emerging Sub- Specialty for Patients with Complex Conditions

Linda N. Geng, M.D., Ph.D., Abraham Verghese, M.D., and Jon C. Tilburt, M.D.   NEJM Dec 23 2021

Patients with unusual, perplexing, or complex symptoms and conditions are not well served by
the fast-paced U.S. health care system.

An estimated 20 to 30% of all primary care consultations are for “medically unexplained symptoms” for which standard evaluations have resulted in no medical diagnosis.1,2

Although clinicians may be tempted to assume that psychological factors account for these symptoms, this large and heterogeneous group of patients also includes those with rare diseases, atypical presentations, new or unknown conditions, and complex illnesses
that challenge standard evaluation.

These patients have varied presentations and outcomes, but they often share a common experience: long, exasperating diagnostic journeys in which they bounce from specialist to specialist in an ultraspecialized health care system that rewards high throughput rather than individualized care.

In recent years, medical centers around the world have been exploring ways to help patients with puzzling ailments who fall through the cracks of established health care systems, reflecting the emergence of “consultative medicine” as a diagnostic specialty.

This emerging specialty, rooted in generalism, aims to integrate the best of the Oslerian diagnostic tradition with the multidisciplinary collaboration and modern technologies needed to tackle uncertain, difficult, or complex diagnoses.

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Lots of millivolts zipping and zapping from one neuron to the next neuron.

So can we, the medical doctors and medical researchers, figure out how to use electricity to tune up the brain?

That’s the BIG QUESTION.  

But the brain is the most complex structure in the universe aside from the universe itself.

But the work of using electricity to tune up the brain of those with mental health challenges is well underway.

Depression , for example, involves multiple neural circuits. This is different in different patients. So what is needed is a personalized approach to using electricity to treat depression.

The personalization is based on brain mapping of brain activity. EEG does that trick.

And then electrodes are programmed to target areas of the brain involved in creating depression.

This is like a pacemaker for the brain.  Deep brain stimulation with leads deep in the brain has been used for decades but it is very invasive and very expensive.

So transcranial brain stimulation using MRI targeting is a much less invasive and more accessible approach to treating depression and other conditions such as OCD.

Personalized brain stimulation requires accurate targeting of the right area of the brain but also the right rhythm. The neural code or the brain code is frequency dependent.  Like a song. Get the frequency wrong and Taylor Swift’s song is gaarbbage.

So the brain is and has been proven to be plastic. It can be rewired and using electricity in targeted and personalized methodologies will help humanity with the biggest illness of all – mental illness.

Raymond Rupert  health system disruptor and patient advocate.

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Uber complex implies high levels of uncertainty. Somewhat like a wicked problem. Not a complex problem.

The objective in using an expert panel is to go deeper in the analysis of the problem.

Hosting a diverse panel generates more options and more viewpoints.

We strive for diversity on the panel. Different disciplines. Different angles. Different styles.

With complexity, we don’t want to address the problem with a single lens.

We want to generate many diverse viewpoints. Then we want to seek consensus. Hard to get there but worth the effort.

Sometimes, we will do this blinded. The experts won’t know what each other thinks.

Sometimes, we will do this as an open discussion. Hard to reach consensus, if the opinions are ever shared.

For our current case involving the mental health and substance use disorder of a young adult with a history of self harm, we are going to start with a closed process. Like a delphi technique.

Then invite all the experts to an open discussion with each one knowing the opinion of the others first.

We hope that this process of using an expert panel delivers the best possible option for our client.

Experts should not be concerned that AI will replace them. Not yet.

Raymond Rupert patient advocate , former family doctor, founder of RCM Health Consultancy.

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A case conference gives everyone on the team an opportunity to participate in the discussion about how we can help the patient.

A case conference is about creating a better future for the patient.

A case conference is not about being critical. A case conference is a reasoned discussion about the patient’s challenges and possible treatment pathways. It is the time to introduce new ideas. It gives everyone an opportunity to participate.

My role as a patient advocate is to facilitate the conversation amongst the doctors and nurses.

My role is very positive as the doctors come together as a team working together to help the patient.

Healthcare is complex and that is why the patient and family have asked RCM Health Consultancy to assist.

We have had 25 years of experience in organizing case conferences and advocating for patients.

The case conferences have been very important in helping the professionals involved in the patient’s care to express their thoughts and feelings about the case, to collaborate with the other doctors involved in the case and the case conference allows the family to express their concerns and gratitude to the doctors for helping.

We are very appreciative of the participation of the treating doctors involved in the patient’s care.

Raymond Rupert patient advocate and healthcare consultant.

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From McKinsey , we learn the principles of improving our decision making processes. This is essential for healthcare consultants and patient advocates when working with complex patients.

Seven approaches to improve decision making processes for complex patients.

(1) being curious about every element of a problem; look at every aspect of the problem and put a question mark at the end of every statement?

(2) adopting imperfect solutions at the onset and then refining them over time. And accepting the imperfection without undue harsh criticism but understanding that the decision will mature and deepen with time and effort.

(3)seeing the problem through multiple lenses by forming a team with multiple disciplines on board;

(4) allowing the team to experiment using thought experiments, at the outset, in order to not create harm of any kind with patients. It is important to recognize that effective problem solving involves a lot of trial and error. And it is important to be able to estimate probabilities as a proxy for levels of certainty about possible solutions. This helps to guide the decision making.

(5) accessing the cognitive surplus and collective intelligence of a network of experts in order to invite the smartest persons into the discussion because they are not there at the outset. Experts like to opine about problems in which they have experience and expertise. Many experts like to share their knowledge freely. If they don’t, then don’t invite them into the discussion.

(6) using storytelling to engage the team members emotionally and get their commitment to think deeply about the problem

(7) ensuring psychological safety for the members of the team so that they will actually contribute with some confidence that they won’t be ridiculed or excluded for speaking out.

The challenge in healthcare is that these principles are rarely applied. That is the opportunity.

The hierachy of the most senior clinician’s ideas are adopted. Reasoned discussion or possibly debate are not allowed.

There is little psychological safety in presenting new ideas that seem “out of the box” thinking. And many universities have their own paradigms for solving problems and do not allow contradictory or conflicting paradigms to enter the discussion.

These factors make solving complex problems less effective and end up hurting patients in the process. That is why the error rate for hospitalized patients is 25-30%.

The fact of harm to patients have led Raymond Rupert, patient advociate, and his team at RCM Health Consultancy into introducing the following 7 principles into their problem solving process when addressing patient complexity every day of the week and every week of the year.

This decision making process at RCM Health Consultancy now has a 25 year legacy of creating positive impacts for patients. We will be pleased to share it with any hospital or clinic group interested in learning more.

Raymond Rupert, patient advocate and healthcare consultant.

Reference: Charles Conn and Robert McLean are the authors of Bulletproof Problem Solving: The One Skill That Changes Everything (Wiley, 2018).

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I remember it as a turning point in my understanding of what a doctor and patient advocate should aspire to be.

To the many whom he inspired, Dr Rakoff is remembered for his extraordinary intellect, kindness, sense of wonder and the agility with which he wove together ideas from a vast range of disciplines, from classic literature and philosophy to politics and pop culture.

At a time when many people were divided and entrenched in their own viewpoints, Dr. Rakoff’s open-mindedness and willingness to engage in reasoned discussion are qualities the world needs now more than ever, Dr. Voineskos, VP of research at CAMH recalls.

“That way of thinking, that ability to tolerate complexity and uncertainty and multiple viewpoints concurrently, I think, is not just important for the future of psychiatry, it’s important for the future of science and the advancement of humanity,” Dr Voinieskos said.

Ultimately, his multi-dimensional perspective gave him a better understanding of the patients he sought to help, said Dr. Roger McIntyre, a professor of psychiatry and pharmacology at the University of Toronto.

“It made him a better physician, in my view, because I still believe despite all the technology we have and all the exciting advances in science… the role of the physician, still to this day, is to bring relief to people’s suffering,” Dr. McIntyre said.

And so it is sad that Dr Vivian Rakoff has passed but his legacy as the role model of role models will endure.

Raymond Rupert, patient advocate and healthcare consultant.

source: Globe And Mail. Oct 10 2020. page B24. Wency Leung Health Reporter.

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The doctors reported first. The nurses seemed to be excluded. The hierarchy of influence limited the discussion.

Our job as advocates was to deepen the analysis of both the problem and possible solutions.

Our team at RCM Health Consultancy Inc. (RCM) led by Raymond Rupert, patient advocate, was fulfilling the role of the advocate in representing the rights of our client ( the patient) to access timely and quality care in order to achieve the best outcome possible.

We began to understand that the hospital team did not have a plan. Their actions were entirely reactive. There was chaos. They were traumatizing the patient. They were confusing the family. They were not advancing the care.

When we started to ask questions about their actions, it was clear that these questions were not welcome.

But our job as advocates is to ask questions, to go deeper in terms of the analysis of the root cause(s), to bring new ideas to the table, to introduce positive strategies used in other hospitals and universities.

That was unfortunately not welcome. In fact, our work as advocates was seen to be disruptive.

But we realized that to advance the quality of care in this case, it was necessary for us to be disruptive when in fact we were deepening the analysis of this case with the objective of achieving the best outcome posssible for the patient.

So we have settled into our role as being perceived to be disruptors of a fragmented process of care that needs to change in order to protect the rights of the patient to be the best outcome possible.

Raymond Rupert, patient advocate and healthcare consultant.

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The MRP ( most responsible physician) led the discussion. When our team led by Raymond Rupert, patient advocate, challenged an assumption about the patient’s diagnosis, he pushed back.

His challenge was framed in a question. Have you seen and examined the patient?

What he did not understand in this challenge was that our role was not to be treating doctors.

Our role in organizing this case conference was to take on the very important role of providing “Quality Control”.

What we discovered in this case conference was that there was no coherent plan to either investigate or treat this complex patient.

This could only be unpacked by reviewing the actions of the member’s of the patient’s treating team.

The role of the advocate in providing “Quality Control” is essential.

The error rate in hospitals is 25 to 30%.

If the advocate is able to prevent a mistake (s) then the effort is justified.

Raymond Rupert, patient advocate and healthcare consultant.

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She has been in hospital for 2 weeks.

Because she is complex, a plan is required to manage her. And it is important that there be a multi-disciplinary team that is collaborating and keeping the family updated.

Unfortunately, there was no plan. That became very evident during and after the case conference.

The case conference involved 12 persons including a bio-ethicist, the MRP ( most responsible physician), the hospital’s 2 psychiatrists, GI medicine, the dieticians, the nursing team, the parents) and Raymond Rupert from RCM Health Consultancy as well as RCM’s nurse practitioner and RCM’s in house psychiatrist.

The MRP led the discussion. Each doctor provided commentary. The actions taken to date were reactive. The hierarchy was at work. Most others at the case conference were not allowed to comment.

It became very clear that the hospital did not have a plan. They disregarded assessments done elsewhere. The not invented here syndrome.

This case conference bordered on chaos. I was embarassed by it.

The attendees are going to be surprised when we ask for another case conference next week to see what the treatment plan is.

Persistence and collaboration will be important to get the best outcome possible for this patient.

Raymond Rupert patient advocate and healthcare consultant.

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