INTRODUCTION to Series: PATIENTS JUST WANT THEIR “PROPS”
“It’s not a suggestion, it’s a prescription. Follow your doctor’s orders!”
Billboard message by a medical practice in Salt Lake City, Utah
Have you ever felt scolded by a provider because you did not follow “doctor’s orders?”
Ever been stuck in the patient waiting area until long after your appointment time?
Ever had your own time with your provider shortened because he or she is running behind?
Ever waited for a promised follow-up communication from your provider that never comes?
Ever wanted to smash something because the fancy new office “portal” is so user-unfriendly?
Ever been told that you cannot get a copy of your medical records unless you pay a fee, because your records “belong to the practice,” not you?
Ever suspected that you are not receiving proper care from your provider because of your race, gender, gender identity, sexual orientation, age, tattoos, or other personal characteristic?
If you can relate to the above short list of common complaints about medical offices, you’re in good company. Many patients are frustrated about how they are treated by their medical providers.
Some professionals in the medical field are now more aware of the value of “patient-centered” health care, including improved outcomes and reduced medical costs. However, currently there is no consensus about what exactly constitutes “patient-centered.” What does that look like exactly?
One obstacle to achieving that objective is a lingering attitude in the medical culture that the smooth functioning of a practice or system, rather than the patient, is what matters most in medical encounters.
In this series of posts, I present unifying concepts and strategies that could be employed to facilitate truly patient-centered (and in some cases even patient-directed) health care.
Patients Have Something in Common with Incarcerated Youth
Early in the 2000s, I was at a juvenile correctional facility leading a focus group discussion at one facility for male inmates to ask them what they thought was most important to include in a health, human relations and sexuality education curriculum. I was surprised to hear their main concern.
“We just want our props,” said one young man, softly.
“Your props?” I asked, unfamiliar with his lingo.
The other teens chimed in loudly: “Yeah! We just want our proper respect!”
Because of mistaken stereotypes I had about juvenile offenders, I had expected them to express different priorities for the curriculum. But what they wanted to learn was the same that adults want to know about sexual health and human relationships: i.e., how to be better romantic partners, be better parents (some already had children), to be more informed about their bodies, to know how to prevent unplanned pregnancies and STDs, and other basic information they had missed during their turbulent young lives.
Their “ask” was echoed in a half dozen more focus groups conducted with female and male offenders in different facilities around the state.
Most of all, they wanted to be treated with respect.
My team of four other health educators and I spent the next two years creating the comprehensive, eight-unit curriculum Making Healthy Choices founded on what we called “The RESPECT Principles,” gleaned from an operational definition developed by a psychologist.[1] The units included lessons on the life cycle, the family, sexual health, gender, attraction, relationships, and sexual exploitation and violence. All the unit lessons were grounded in the concept of respect.
We were delighted when we realized that the seven essential elements of the psychologist’s definition could be communicated in behavioral terms to our learners, using the acronym RESPECT:
R– RESPONSIBILITY – Be accountable for my own actions. When a conflict occurs with someone, “own” my part of the problem.
E- EMPOWERMENT – Recognize and use my personal strengths responsibly. Help others do the same.
S – SELF-ESTEEM – Value myself and what I have to offer to others.
P– PERSONAL BOUNDARIES – Set my own limits and honor the limits of others.
E– EMPATHY – Try to understand and accept the feelings of others, even if I don’t agree.
C– COMMUNICATIONS – Care about what others have to say. Listen and be willing to talk.
T– TRUST – Have faith in myself and others.
Trust in a relationship requires all the other six elements to develop and be sustained.
See Handouts: The RESPECT PRINCIPLES
∞
“Distrust of the health care systems is relatively high in the general population in the U.S. with between 20% and 80% of study respondents reporting distrust and is strongly associated with worse self-reported health.” National Library of Medicine, 2006[2]
Trust in health care systems was already widely variable among patients in 2006, well before the onset of the COVID-19 pandemic.
Since then, trust in the system has plummeted for a host of reasons, because of the pandemic itself and as a result of increasing standardization, bureaucratization, and corporatization of the “medical industrial complex,” as some call it now. The growing influence over health care decisions by Big Pharma, Medicare, Medicaid, and private insurance companies frustrates patients and providers alike.
Also, double-booking of patients and spirit-breaking patient loads, as well as the palpable decrease in patient respect and increasing cases threatened or actual violence against providers, are causing doctors and staff to leave the profession entirely, creating staff shortages that only worsen the problems.
The resultant depersonalization of the practice of medicine makes the challenge of offering truly patient-centered health care more difficult. The current mission of practices is too often on “processing patients” (terminology used by some providers) as if patients are livestock to be herded as quickly as possible through a health care facility, rather than treated with the dignity they deserve.
Occasionally, newer medical offices are designed to look and operate like animal barns, with huge sliding doors on either side of a treatment room, one for the patient entrance and one for the provider, to manage and expedite patient traffic through the facility.
Many patients also have had off-putting experiences with prejudice, stereotyping and discrimination by providers based on their personal characteristics, which primes them to distrust all medical providers.
Consequently, too many conventional and alternative medical practices alike get failing marks on every rubric of the definition of RESPECT. Here are examples:
Responsibility: Patients’ Time is Valuable, Too
Is it respectful to patients to routinely require them to arrive early for their appointments and then have to wait an extraordinary amount of time before actually seeing their providers because the doctor’s schedule is routinely over-booked (a profit-motivated practice), or because the provider is running late, without receiving any apology or explanation?
Do providers take responsibility for their part of a problem their practice created for patients or do they lie to cover up for their mistakes or omissions? One example is when a medical staff tells a patient who has already had their ordered blood tests or other studies completed that they must return to the lab because “Doctor wants some more tests done.” (This claim is often a cover-up for “Someone here fouled up and didn’t order or conduct the right tests.”)
Empowerment: Information is Power
Is it empowering to tell patients they cannot obtain their lab test results as soon as they become available (prolonging their worry time) rather than receive them only when they can meet with the doctor again (an office policy that is primarily self-serving and profit-motivated)?
The costs of such tests are covered by the patient, or their insurance company (which typically is paid by the patient or their employer)—not by the medical provider. Thus, the test results belong to the patient, not the medical practice, despite staff assertions to the contrary.
Is it empowering to mislead patients with disabilities who inquire about the possibility of obtaining care from their facility by claiming that it is “ADA compliant,” when it is not accessible even to a person who uses a wheelchair? Or to turn away patients in a mistaken belief that the only disabilities they are required by law to accommodate are mobility-impairments or other “visible” disabilities? Many disabilities, such as mental disabilities, multiple chemical sensitivities, or a compromised immune system, are “invisible” to outside observers but no less deserving of reasonable and effective accommodations to make it possible for affected patients to obtain their health care.
Is a patient empowered when a provider withholds approval for necessary medical exams or equipment because of “the doctor’s discretion”? Doctors are not all-knowing. What about the patient’s discretion? (Again, who is paying for that health care and whose life is it?)
One dangerous form of “disempowerment,” for example, is when a well-meaning oncologist tells a patient who has completed the treatment regimen for metastatic cancer that their condition is “cured,” just because the post-treatment re-testing is not sophisticated enough to detect remaining cancer cells. Such misleading “false hope” can cause a patient to revert to former behaviors that contributed to the cancer in the first place (e.g., smoking, drinking alcohol, not managing stress, not taking their supplements, poor diet, etc.) An overly optimistic prognosis may feel good to the patient and the provider, but it risks that such patients will not be vigilant about the likelihood of recurrence or mindful about the need to maintain a cancer preventative lifestyle. (I say more about this issue in a future blogpost “Is Giving Patients False Hope Harmful?”
Self-Esteem: Business Basic: The “Client” is Always Right
Does it help a patient’s self-esteem to lecture him or her, or threaten to discontinue providing health care) if the patient is deemed to be “non-compliant” with the provider’s prescribed treatment plans? (I will elaborate about the use of such offensive terms about patients in a future blogpost: “Why Providers Should Stop Calling Patients Non-Compliant”)
Every patient has the right to make his/her own decisions about whether and to what extent they follow through with treatment “plans,” especially when they were not mutually agreed upon or when they do not fit with the patient’s current needs, circumstances. or personal beliefs. The right to “refuse”[3] any treatment is usually spelled out in the patient’s intake paperwork, in a pro forma statement that is not acknowledged or “complied with” by the provider or staff.
How does it enhance the self-esteem of patients to whom a provider at some point in their lives prescribed a controlled substance, upon which they have become physiologically dependent, to blame, shame, and stigmatize them; require that they sign an illegal, discriminatory contract; subject them to random urine tests, obtained under staff supervision; or and summarily dismiss them from care if they are even suspected of violating any of the contract’s provisions?
In the non-medical world, getting individuals addicted to a drug is considered “drug-pushing” and is considered a more detestable act than the drug use itself. But in the medical world, patients using controlled pharmaceuticals, as prescribed, are routinely treated as if they are a real or potential drug offender, not a victim of irresponsible over-prescribing by doctors. (See my future blogpost “Double BIND: The Mistreatment of Patients with Benzo Injury)
Personal Boundaries: Patients Have the Right to Know What to Expect
Some providers and staff routinely violate patients’ physical boundaries, even when a patient objects, in favor of making a medical procedure more efficient for them or the results of imaging easier for the technician or radiologist to decipher.
One could argue that more precise test results (from radiological studies, for example) benefit the patient also. But the use of sneak attack tactics to accomplish a medical procedure (such as by suddenly twisting a patient’s hip during a bone density scan to get a better image) lowers the patient’s trust in staff and can injure patients.
When any provider says to you: “This is going to hurt a little bit,” brace yourself for something far worse. Medical providers, during their training and their practice of medicine, have had to become hardened to seeing patients in pain to provide proper medical treatment even when it causes patient discomfort. Likewise, many providers downplay potential side effects of aggressive treatments, out of concern the patient will not follow through with it.
So, if any provider ever tells you, “The cure for this condition is worse than the condition itself,” believe them! And make your decision about whether to undergo the treatment accordingly.
Communications: Effective Communications are a Two-Way Street
How effective are communications between patients and providers who rely too heavily on poorly designed, confusing, temperamental “portal” methods set up by doctor’s office and facilities? (In one survey, half of respondents said that one bad digital encounter ruins their entire experience with the provider.)
Involving an intermediary, such as a nurse or medical assistant, in communications between a provider and the patient, makes the message highly prone to errors. As often as possible, patients should hear directly from their provider, even if it is via a portal message.
Respectful communications also need to be timely. Medical practices that inform patients in their outgoing voicemail message to expect to wait up to three days for a response that is non-urgent are hardly being considerate of patients who may need a response sooner.
Trust: Lie to Me Once…
In my experience, lying to patients is endemic to the medical system: everything from false, misleading marketing about the practice to “circling the wagons” to protect staff members who make mistakes that could get them dismissed. The “white coat code of silence” thrives in medical practices, large and small. (For detailed accounts of this major factor in patient distrust, I invite you to read my upcoming memoir/advice book Bold and Relentless: A Memoir about a Great Love, Tragic Loss, and Medical Madness (currently in progress) and Marty Makary’s excellent book on the need for truth in medical care, Unaccountable: What Hospitals Won’t Tell You and How Transparency Can Revolutionize Health Care (Bloomsbury Press, 2012.)
As for me…
I go to medical providers for the same reason I turn to any other service provider: because I am seeking their expert opinions and care. Of late, much of the medical field has morphed into primarily a profit-making business, not a profession.
Therefore, when I see a health care provider I expect to be treated as their client, not as a “patient,” which is a degrading moniker, derived from the Latin word patior meaning “to suffer or bear.”
I do not seek health care to “suffer or bear” a condition—or to meekly endure disrespectful treatment by the physician or staff. I come for the assistance I need to feel better and become healthier.
I carefully consider my providers’ advice on my medical concerns before making ultimate decisions about my health. That advice, after all, is what I am paying them for. It would be wasteful and harmful to ignore it.
However, I do not take “orders” from anyone, unless those directives make sense to me and fit with my life, health, and current circumstances. If that makes me “non-compliant” in some provider’s eyes, then our working relationship will have a short lifespan!
Hopefully, such a provider will not do me the terrible disservice of putting prejudicial statements in my chart notes as a “red flag” to alert other providers. (See upcoming blogpost “Weaponizing Chart Notes: When Doctors Cross a Line”)
The bottom line, whether providers choose to acknowledge it or not, is that I didn’t sign up for the armed services; I didn’t commit an offense that landed me in police custody or in front of a judge; I’m not a child under “in loco parentis” authority; and I do not suffer from dementia or any other condition that renders me incapable of making my own decisions.
I am an autonomous, self-directed adult seeking professional medical advice and services.
At a minimum, what I expect from any medical provider is my ‘props.’
Related Blogposts Coming Soon:
“Why Providers Should Stop Calling Patients Non-Compliant”
“Weaponizing Chart Notes: When Doctors Cross a Line”
“Is Giving Patients False Hope Harmful?”
“Cancer: A Growth Industry”
“Integrative Health Care: Fact or Clever Advertising?”
REFERENCES:
[1] Timothy Egan, The Immortal Irishman: The Irish Revolutionary Who Became an American Hero, Houghton Mifflin Harcourt (Boston and New York), 2016
[2] Chen, Mullins, and Thomas, “Personalized Strategies to Activate and Empower Patients in Health Care and Reduce Health Disparities,” Health Education and Behavior, Publication of Society for Public Health Education, https://pubmed.ncbi.nlm.nih.gov/25845376/ February, 2016
Related Handout: “The RESPECT Principles” (See Resources and Handouts)
[1] The author regrets that the name of the psychologist was not locatable now in a Google search.
[2] Armstrong, et al, “Distrust of the Health Care System and Self-Reported Health in the United States,” Journal of Internal Medicine, 2006 April: 21 (4): 292-297.https://pmc.ncbi.nlm.nih.gov/articles/PMC1484714/
[3] I prefer the more respectful term “decline” rather than the accusatory word “refuse,” which implies that the patient is breaking a rule or violating a protocol, rather than exercising his/her right to decline any treatment at any time and for any reason.