Organized Medicine Wants to Control Your Death. Acquiesce – or Exercise Your Autonomy.

(The author is a psychologist and professor emeritus in the University of Washington’s Department of Psychiatry. He has more than 50 years’ experience as a teacher and researcher, and for 25 years has focused on advance care planning. He welcomes correspondence about end-of-life issues at rbstuart88@gmail.com. – Jay Niver, editor)

The mission statements of organized medicine strongly endorse the ethical higher purpose of promoting patient health. Unfortunately, its operating practices inexorably move toward economic pragmatism that often conflicts with patients’ best interests.

As healthcare organization management shifts from Chief Medical Officers to Chief Financial Officers, patients must make concerted efforts to choose treatment that accords with their personal goals – rather than the interests of medical organizations and providers.

Medical excesses stem from the toxic combination of over-diagnosis and over-treatment. For example, a recent article in JAMA Surgery noted that cancer screening is typically motivated by a genuine belief in its value, but has also become an important revenue stream for volume-driven medical care systems in the US.” The author notes that much cancer screening fails to identify the most virulent tumors until it is too late, and is often harmful because of common false positive results and the sense of “dis-ease” it creates, leading many patients to accept unnecessary treatments that are useless and can have troubling consequences.

There are many explanations for this negative, medical mission creep. The most obvious is economic.

With declining rates of reimbursement, the survival of organizations and providers depends upon increasing billing for all forms of diagnostic and interventional procedures – the costlier the better. Although compassionate exchanges with patients are invaluable, not only do they not pay the bills, but they also are often seen as distractions that thwart revenue generation.

With each step into a hospital, the complexity of the cost of the treatment delivered escalates sharply. This could be justified if the procedures enhanced patients’ health, but the reality is that a quarter or more are futile, and many have adverse effects caused by the treatment and/or its interaction with other interventions

Patients often unwittingly consent to this escalation of care. Often without formally articulating the policy, almost all healthcare organizations ask patients to rapidly sign detailed, small-print consent forms through which they accept unqualified use of resuscitation, as well as other, often unspecified interventions.

Unfortunately, the traditional treatments these documents warrant are often not concordant with the intervention patients thought they were agreeing to accept.

Other factors also influence the disconnect between what patients want and what they get. Fear of litigation is a major contributor. Surveys have shown that as many as half of specialty providers like oncology, cardiology, and emergency medicine offer, or are willing to consider offering, procedures they believe to be futile. This is done to shield themselves against allegations that they failed to do everything possible to help their patients – with the added benefit of increased billing.

Faulty provider judgment is another contributor. Many adhere to traditional practice protocols that may have been altered by new research of which they are unaware. With more than 30,000 medical journals worldwide, it is not surprising that providers who see 12 to 30 patients per day do not have time to keep up with the latest findings.

In addition, providers often focus on the outcome of the procedure they offer and do not consider its interaction with other interventions the patient may undergo. For example, many patients with cardiac arrest can be resuscitated, but doing so can doom them to spending months if not years attached to machines that keep them alive but uncommunicative, in pain, and/or in restraints to prevent their removal of irritating tubes.

Everyone knows that death is an incontrovertible stage in the cycle of life, yet many providers view death as an enemy and/or an option rather than being inevitable. Some naively believe they have failed if they cannot prevent it. Their failure to approach death realistically can expose patients and their families to years of physical, spiritual, and economic stress.

Summarizing the problem with organized medicine, one group concluded: “Patient care is often oriented around the system’s culture and processes, rather than orienting the system around the patients’ needs. We don’t as a society really have the capacity to support the needs and wishes of what people really want”

The bad news is that the system makes many mistakes: the good news is that you can minimize the chance that your care is one of them by taking appropriate action.

How to hold your own in the system

Navigating the healthcare system is similar to beginning a chess game: You are unlikely to win unless you formulate a strategy and anticipate the moves of your opponent. Four important steps can increase the likelihood that you are not over-, wrongly, or under-treated. With help of several collaborators and input from many patients, I have developed three documents for planning end-of-life care. Since they are the documents I know best, I will focus on them. (Of course, there are many alternatives.)

1) Begin by clearly articulating your preferences, writing a personal statement, and then creating a living will, e.g. www.6stepslivingwill.org. Please do this now and do not keep putting it off because you want to avoid hard decisions. Many people delay doing it until it is too late, making themselves vulnerable to medical mistreatment.

2) Next, collect the information you need to evaluate the advised treatment(s). You can do this by independently searching for information. “Dr Google” offers strong recommendations, some of which are valid, but you need skill in finding the most accurate information.

For example, skip the first links that begin with “Ad,” which means their creators paid for them to be there. Examine the source of the post to differentiate between commercial pitches and unbiased data, e.g. by opening the “about us” box on websites where you will learn, for example, that many disease organizations are essentially fronts for drug and device manufacturers.

Begin with quality sites such as the Mayo Clinic and Cleveland Clinic and federal agencies that are committed to valid, noncommercial reporting. List your conclusions and so you can discuss them with your providers.

3) Discussions with providers are essential. Since your provider sees many patients every day, it is helpful for you to bring a currently updated Step 5 from the 6 Steps Living Will that summarizes important information about you. When treatments are recommended, ask: (a) your diagnosis; (b) any burden associated with the treatment; (c) possible positive or adverse short- and long-term effects; (d) how compatible this treatment is with other aspects of care you’re receiving; (e) where it fits in a sequence of likely ensuing procedures; and (f) how it compares with no treatment or other treatment alternatives.

If the recommended treatment is significant, and you have any hesitation about accepting it, seek a second opinion, ideally from a provider in a different institution. If the second opinion differs from the first, closely examine the logic and data support of each recommendation, and consider a third opinion if there is no clear winner.

4) As another step, collaborate with your provider in creating a set of medical orders that will be entered in your record. It is best to use the Conditional Medical Order or Medical Order for End of Life Intervention forms because they are unbiased, comprehensive, and contain useful options such as the ability to request medical aid in dying. Unfortunately, the commonly used POLST (Physician Order for Life Sustaining Treatment) does not offer these advantages.

5) Finally, choose a surrogate or proxy who will represent you if you are unable to speak for yourself, and grant this person a Durable Power of Attorney for Healthcare (DPOA). This should be someone who will be accessible in crises, knows you well, and is able to efficiently process medical information and negotiate decisions calmly under pressure.

Even if your surrogate was present when your orders were created, to verify that your preferences are understood, ask several questions, e.g.:

• What do you think I want?
• If you would do something different, will you honor my request?
• How would you respond if a provider says something like, “When my mother was as sick as yours, this is what I did …”? (The optimal response is: “I hope it was what your mother wanted, but it is not what my mother wants.”)

Managing dying and death is difficult. But doing nothing makes you a pawn in the medical system, whereas exercising your prerogatives makes you the chess-master.  Please act now so you don’t squander your power.