Section 8 - Fixing our health care system

               What we can do now

My proposal is this.

A cadre of doctors from around the country needs to quit the practice of medicine in order to establish a new profession, the profession of Personal Health Care Advocates. 

Personal Health Care Advocates (PHCA) will fill the advocacy vacuum that now exists within the health care system.  They will provide individuals with an opportunity to retain their own personal advocates – professionals who work for them, and who place their interests above all others – on matters related to their health care, just as they might retain an attorney on legal matters. 

In fact, based on the premise that patients have just as much right to a strong advocate as do accused felons, PHCAs will model themselves not after the medical profession, but after the legal profession. 

Accordingly, PHCAs will not practice medicine.  Instead, they will practice medical advocacy, doing whatever is necessary to guard the rights and welfare of their clients in all their interactions with a hostile health care system. 

How PHCAs would work

Before we consider the specific services that PHCAs might offer, or even why successful physicians might be willing to quit a steady-paying job to embark on such a venture, let’s speculate on a possible mission statement, and a potential code of ethics, for this new profession.

Personal Health Care Advocates – A Suggested Mission Statement

Personal health care advocates will perform the same service within the health care system that attorneys perform within the legal system. We will be our clients’ advocates and advisors, assuring that a dedicated and knowledgeable professional is representing them, protecting them, and advancing their rights and welfare within the health care system.  We will accomplish this by: a) assisting our clients in choosing, understanding, and interacting with their health insurance providers; b) educating and “coaching” our clients to become more effective health care consumers; and c) at the discretion of our clients, monitoring the decisions of and negotiating directly with health care providers on their behalf.  Our relationships with our clients will be built on trust; we will hold their confidences in private, will assiduously avoid conflicts of interest, and will work directly for them, and for no one else.

Personal Health Care Advocates – A Suggested Ethical Code

1.   We will always work to protect the rights and welfare of our clients within the health care system

2.  When engaged as PHCAs, we do not practice medicine, nor do we represent ourselves as practicing medicine.

3.  We will avoid actual or apparent conflicts of interest; as PHCAs our clients are our only professional interest.

4.  We will keep the content of all interactions with our clients strictly confidential.

5.  We will work to see that our clients are fully informed at to their medical options, and that they are offered all medical services that are reasonably likely to benefit them.

6.  We will not encourage false or miniscule hopes, nor nurture unreasonable demands, nor engage in deception on our client’s behalf.  We will not work to gain medical services for our clients that are highly unlikely to benefit them.

7.  Our purpose is to strengthen, not weaken, our clients’ relationship with their physicians. We will always aim work with our client’s physicians, instead of against them, in assuring that our clients’ best interests are fully protected. 

8.   We will charge rates that are within the grasp of the average working family, and will strive to make our services available to those who cannot afford to pay.

This mission statement and code of ethics establish several things. They establish that PHCAs do not practice medicine, but instead serve in an advisory and advocacy role aimed solely at protecting the rights and welfare of their clients. They establish that PHCAs will model themselves after lawyers, rather than doctors. (Note: “Client” is used instead of “patient,” both to reinforce the “attorney-client” paradigm, and specifically to reinforce the notion that PHCAs do not practice medicine.)  They establish a fiduciary relationship between the PHCA and the client, assuring that the PHCA will always act with the client’s best interests in mind.

What services will PHCA's provide?

The potential services of PHCAs can be divided into at least three categories.

Category 1 Services – Dealing with HMOs and insurance companies.

We have seen how HMOs systematically make it difficult for patients who need expensive care to get that care. Their goal in making it difficult is twofold.  First, of course, they don’t have to pay for care they deny.  Second, by discouraging and frustrating sick people, they provide incentives for the sick to leave their health care plan to seek “greener pastures.”

While doctors truly want to act as their patient’s advocates in dealing with insurance companies and HMOs, the process is often so frustrating and time consuming, and the consequences so onerous if they make a habit out of fighting too hard and too often for their patients, that in practical terms they cannot.   PHCAs, on the other hand, can fearlessly assist their clients in dealing with health insurance companies.  They can help clients to assess their insurance options before choosing a plan, so that they fully understand the limitations of their plan and are less likely to be surprised when they become ill.  PHCAs can help in expediting the approval of visits to specialists, and of tests and procedures to which their clients are entitled.  And if their clients are denied reasonable services, PHCAs can argue their case as aggressively as is necessary to see that justice is done.  HMOs are likely to pay attention if they know that a well-informed and persistent professional advocate is operating on the patient’s behalf.

PHCAs can also assist their clients in interpreting medical, hospital, and insurance bills, and assuring that the charges that appear on those bills are in line with the services that were actually provided.

Category 2 Services – Education and administrative services

The best way to minimize the impact of covert or bedside rationing on a particular patient is for that patient to know what ought to be happening with his or her health care.  This is because, obviously, bedside rationing is easiest when patients don’t know what to expect. The most common way for a doctor to conduct bedside rationing is simply not to mention an available option that he doesn’t want to provide. With relatively uninformed patients, doctors can do such “rationing by omission” without raising any suspicion.

In this regard, PHCAs can assist their clients not only by helping them to become truly informed about their diseases, but also (and equally importantly), to seem informed. Doctors will be more likely to review all therapeutic options with patients who display significant knowledge about their disease and/or the health care system in general.  Thus, PHCAs should aim to educate their clients to understand their diseases, the health care process, and how the two interact.  Using a combination of personalized instruction, literature, references, videos, audio tapes and web sites, PHCAs can train their clients to anticipate what their doctors ought to be thinking about and what they ought to be doing for them, and to demonstrate to their doctors that they are well-informed. 

PHCAs can conduct brief “coaching” sessions with their clients prior to important doctors’ visits, so the client will be entirely clear on what should be accomplished during that visit.  For instance, clients should know what questions need to be answered during the visit, and what medical decisions ought to be made.  Similarly, PHCAs can offer “debriefing” sessions following these doctors’ appointments to critique what happened, to make sure all the essential goals were met, and to assess the need for the client to follow-up with their doctor prior to the next scheduled appointment.

PHCAs can engage their clients in discussions of living wills, advanced directives, and organ donor options, so that such decisions can be made leisurely, with a full understanding of all the implications, and not under duress.

PHCAs may also serve as a centralized clearing house for maintaining complete copies, from all sources, of their clients’ medical records. By this means, they can assure that when their clients are seeing new doctors, they will be able to provide them with a complete set of their records. Such services can be provided 24 hours a day, so that, for instance, emergency room doctors will not make serious errors in treating their clients simply because they were unable to access records.

Category 3 Services – Monitoring and negotiating health care

PHCAs will be available to monitor, in person, the care their clients receive during a “health care episode” (such as a hospitalization or a visit to the emergency room).  PHCAs will not supervise or oversee the care; rather, they will observe it, monitor it, assess it, and advise their clients as necessary.  On request and with the client’s permission, the PHCA can communicate or negotiate directly on their behalf with physicians, hospitals, or insurers.

The function of the PHCA during these health care episodes would be entirely analogous to the function your sister would serve if she were a doctor and you were hospitalized.  She would not manage your care, nor would she be actively involved in your care. But she would be watching everything that was done to you, and would be quick to step forward (with a gentle question, a probing question, or a firm hand, depending on the situation) if she saw something amiss.  She would make sure you understood everything that was going on, and that the decisions you made regarding your care were well-informed decisions. She would be a knowledgeable, dedicated advocate, concerned only for your safety and welfare.  And the mere fact that your doctors knew she was there would cause them to take that extra little bit of care, to make sure they consider all the appropriate alternatives, and are doing the right thing.

Having a PHCA would be like having a doctor in the family.

Where will PHCAs come from?

Take my word for it.  There will be plenty of PHCAs once the concept catches on. 

Doctors like me – the middle-aged kind, the kind who once were able to practice medicine relatively unencumbered by MBAs, intimidating federal regulators, and high-school graduates reading from lists of covered procedures – are ready to leave the practice of medicine in droves. If we’re not actually leaving at the moment, it’s not because we’re not frustrated enough to leave, or because we think the problems the profession is having now are temporary. It’s because we can’t afford it yet, or we don’t want to abandon our patients to the tender mercies of the Gekkonians or Clintonians, or we’re not quite ready to leave medicine (the center of our lives for decades) altogether. 

Why are doctors so unhappy?  There are lots of reasons, including all the ones you’ve heard – the drop in income, the mounting paperwork, the oppressive regulations, and the loss of control over our practices.  They’re all good reasons, too.

But without a doubt, the major reason doctors are frustrated is their keen sense that the doctor-patient relationship is being destroyed due to factors out of their control.  Doctors understand, deep down and better than patients, that without that relationship, their worth as professionals is fatally devalued; their profession is, in fact, ended.

Plenty of doctors will be attracted to the PHCA profession, and soon.  PHCAs will be able to shed all the encumbrances of modern medicine, and to concentrate on the one thing doctors ought to be concentrating on but cannot – advocating.  Many, many conscientious doctors will find this prospect extremely attractive, even at a substantially lower income.

Where will the clients come from?

This is actually a greater concern.  How many patients sufficiently understand the danger in their increasing isolation within the health care system?  How many would be willing to pay, out of their own pockets, for a dedicated personal advocate?

Certainly it’s a minority of patients.  It is frustrating to many doctors that, as concerned as they are with the state of the doctor-patient relationship, survey after survey show that patients themselves are much less concerned.  A majority of patients think they have a good relationship with their doctors, and most actually do.

But problems with the doctor-patient relationship do not become manifest until patients become sick, often until they become very sick or chronically ill.  That’s when the health care system ratchets up the pressure on doctors, and that’s when the problems begin to occur.  That’s when patients begin to feel that perhaps concerns other than their well-being are driving their doctors’ thinking.

The surveys that show how famously doctors and patients are getting along are similar to the polls that show that most patients love their HMOs.  The vast majority of insured patients are healthy, and HMOs specialize in keeping healthy patients happy.  So when you ask all the patients in an HMO how they like things so far, most of them turn out to like things just fine.  The doctor-patient relationship is a big part of that equation.  It tends to look pretty good when the patients are healthy and the doctors are getting paid.

The clientele of PHCAs will not come from the majority of healthy patients, at least not at first.  Initial clients, for the most part, will be from the minority who have battle scars.  They will be the ones that understand their precarious position from personal experience.  Only after PHCAs demonstrate their worth to these patients will the larger population of patients begin to consider them seriously.

What will happen when the health care system notices the PHCA movement?

Two guesses. 

If the health care system is entirely geared up to covertly ration health care, if covert rationing requires destruction of the doctor-patient relationship, and if PHCAs are a sneaky way of re-establishing that relationship outside the present system, then there is only one way for the health care system to respond.

The threat will be recognized immediately, and everything possible will be done to kill the PHCA movement.

There will be a battle.  Attempts will be made to declare PHCAs’ activities illegal, to block PHCAs from having access to their client’s medical records and from maintaining a bedside presence.  PHCAs will be threatened with liability suits. Attempts will be made to assert that PHCAs are actually practicing medicine, and therefore their activities fall under the same guidelines, regulations, laws, and constraints as “real doctors.”  If any of these attempts take root, the PHCA movement will die on the vine.

Those attacking PHCAs will be many, and they will be powerful.  They will likely include every entity threatened by such a thing – the insurance industry, the government, and organized medicine.

While these entities are exceedingly potent and may appear to hold all the cards, they have a potentially fatal flaw.  For, in order to kill the PHCA movement they will have to argue, in effect, that allowing patients to hire their own advocates is a very dangerous thing, a thing that needs to be stifled – or at least regulated and controlled (like the medical profession) to the point of uselessness. The whole point of creating this new profession, of course, is to move the doctor-patient relationship – rather, the PHCA-client relationship – to a new realm, to allow that relationship to flourish again, unencumbered by all the things designed to encumber it within the present health care system.  When all the great powers argue that such a thing is bad, well, that will be a very risky argument to make.

What ultimately happens will depend on one thing.  It will depend on how patients react when they see all the mighty forces aligning to rob them of their right to hire their own, private, personal consultant on health care matters. It will depend on how patients react when they see the vigor with which their attempt to protect their own safety is attacked.  If patients understand the stakes, and if they become outraged enough at a crass attempt to eliminate what ought to be a simple consumer’s right (not to mention a simple patient’s right), then all those powerful forces will be vanquished.  For an aroused public will be invincible.

And the battle will expose, once and for all, and for all to see, the extent of the systematic destruction we have permitted of the doctor-patient relationship, and the extent of the covert rationing that has required it.

And once the people recognize this fact, once the veil of subconscious collusion is lifted, we will have no choice but to soberly and objectively address the root problems of health care, and to begin an attempt to design a system that fairly and effectively distributes the resources we all own together.

In the end, it doesn’t much matter whether the PHCA movement survives intact in a redesigned health care system.  Indeed, it would be much preferable for that redesigned system, by restoring the sanctity of the doctor-patient relationship, to render PHCAs obsolete. The important thing is that the public, by clearly and firmly insisting on their right to an advocate in matters related to health care, will start a chain of events that can do no less than cause us to finally and openly address all the problems we have been studiously ignoring. 

And the doctors who begin the PHCA movement, who leave their profession in order to save it, will provide the catalyst, the centering point, the means of focusing and concentrating the attention of the broader public on where exactly we are going with our health care system, and what we need to do to bring it back to where it ought to be.

Next: Appendix - Devising a methodology for open rationing

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