Author: Madeline Kameny

Just Trust Me (Part IV)

In the past few weeks, I have illustrated how trust (or lack thereof) shapes the relationship between individuals and healthcare, and how mistrust is historically justified. In this last segment, I want to talk about potential solutions from a social justice standpoint.

Trust is often cited in public health from the angle of paternalism, something that public health is often associated with. When we think of optimal paternalism – using scientific knowledge to influence the health decisions of the general public – we ask ourselves: are we abusing trust, or using it for good?

Public health, while sometimes paternalistic, already stresses to its students the importance of working with oppressed communities as equals to identify and solve problems. Medicine needs to catch up. Many medical students already participate in racial and cultural training, but they need to be trained from a structural angle – to gain an understanding of oppression and policy – too.

We need to support training for healthcare providers that doesn’t shy away from the tough stuff. Hands-on learning, such as tactful poverty simulations, can help. This will allow them to understand things like how the cycle of poverty makes some patients less talkative with authority figures (such as doctors) than others. We need to support minority students in medicine, so that patients can see representation of themselves and feel understood. We need to provide incentives for students to stay in their own communities for residencies. Of course, broad class mobility-enabling policy is the ultimate solution.

Many times, our work seeks to increase trust, but that puts the burden on the patient instead of addressing the reasons behind mistrust. Teaching trust in and of itself is a paternalistic objective: we should instead focus on deserving it.

Sources:

http://commonhealth.legacy.wbur.org/2012/02/minority-doctors-diversity

https://campus.fsu.edu/bbcswebdav/institution/academic/social_sciences/sociology/Reading%20Lists/Social%20Psych%20Prelim%20Readings/IV.%20Structures%20and%20Inequalities/2002%20Lareau%20-%20Invisible%20Inequality.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2156058/

Just Trust Me: Part III

“You can’t health care-access your way out of this problem. There’s something inherently wrong with the system that’s not valuing the lives of black women equally to white women.” -Raegan McDonald-Mosley

Last week, my post scratched the surface of the history of oppression disguised as medical treatment. Today, I want to talk about how this mistreatment, and the historical trauma that ensues, exhibits itself in patient-practitioner relationships.

Many of us have experienced the helplessness of not knowing how much a medical procedure will cost until it’s over. It’s a terrible feeling: it feels like everyone is communicating without you; ‘above’ you. For many non-white and immigrant patients, this feeling lasts for the entire appointment: from scheduling to decision-making to discharge.

Traditionally, there are four types of patient-physician relationships, each with varying levels of patient power and involvement in decision-making. There is also a distinction between patients preferring an active or passive role in decision-making. Acknowledging the relationship between trust and decision-making preference, these researchers suggest that, for black patients, race may impact both: such that a patient who trusts her individual physician “may have residual mistrust of the health care system that limits [her] ability to relinquish decision-making control.” Cultural differences, as well as fear that the doctor does not have one’s best interests at heart, can influence the relationship between patients and their physicians in Hispanic populations as well.

Racial bias, conscious or otherwise, has been found to influence treatment decisions. Black patients are systematically under-treated for pain due to false beliefs of biological differences between blacks and whites: such as black people’s skin being thicker, or blood coagulating more quickly. This is exacerbated by existing power structures between whites and non-whites, as well as between doctors and patients. In over 200 personal stories from black women of their childbirth experiences, NPR found a constant theme of being devalued and dismissed by medical providers.

Read Part IV here.

Sources:

https://www.npr.org/2017/12/07/568948782/black-mothers-keep-dying-after-giving-birth-shalon-irvings-story-explains-why

http://www.pnas.org/content/113/16/4296

https://www.theatlantic.com/health/archive/2014/05/why-many-latinos-dread-going-to-the-doctor/361547/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3766485/

http://www.antoniocasella.eu/salute/Emanuel_1992.pdf

Just Trust Me (Part II)

“Dr. X, or whoever she was, she must have been experimenting on me…she left a big scar on my neck … I don’t want that lady to ever touch me again. I don’t like her and I don’t trust her.

Last week, I introduced the issue of trust in the medical setting and how it may vary across scenarios and patient characteristics. But to truly understand why some patients don’t trust the healthcare system, we absolutely cannot ignore the history of their oppression by its hands.

The most well-known medical violation under the guise of research in the U.S. is the Tuskegee “study,” a 40-year-long theft of human rights that, brilliantly and viciously, utilized both government and community-level networks to recruit black men in Macon County, AL. Most had syphilis. The participants, many of whom had never seen a physician, were not made aware of the dangers, causes, and treatment options for their disease. They were not offered informed consent, nor the option to leave the study, and many died.

But Tuskegee is only the tip of the iceberg. Henrietta Lacks’ cells were cultured without her consent during her battle with cervical cancer in 1951 and are still widely used today. Gynecologist J. Marion Sims ran “practice runs” of his procedures on enslaved women. A common belief in the 20th century was that those who could not pay for medical care, many of them poor minorities and immigrants, “owed their bodies” to science. Harry Laughlin performed forced sterilizations on “socially inadequate” Puerto Rican women until the 1970s. The list could go on.

Today, this unfathomable history is manifested in mistrust in healthcare and scientific research. Evidence suggests that black patients are less likely to trust physicians, are more worried about medical privacy and experimentation than are white patients, and are less likely to participate in clinical trials. Some patients are not fully aware of the history to their mistrust – it is a cultural feeling that has been passed down through generations. This is called historical trauma. In addition, racism is still rampant in the healthcare system, both intentional and subconscious, which I will delve into in Part III. These features make this issue even more difficult to address.

Read Part III here.

Sources:

https://www.extension.umn.edu/family/cyfc/our-programs/historical-trauma-and-cultural-healing/

https://www.ncbi.nlm.nih.gov/pubmed/8918067

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1497554/

http://stanford.edu/group/womenscourage/cgi-bin/blogs/familyplanning/2008/10/23/forced-sterilization-in-puerto-rico/

http://time.com/4746297/henrietta-lacks-movie-history-research-oprah/

https://www.npr.org/2010/02/02/123232331/henrietta-lacks-a-donors-immortal-legacy

https://www.cdc.gov/tuskegee/timeline.htm

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1405662/?page=4

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3766485/

Just Trust Me (Part I)

Well I’m not trained medically, so I’m taking a lot of what they say on faith.”

This was the response of a 47-year-old man, whose interview was part of a study on patients’ trust in hospitals.

There is no universal definition of trust that will apply to every scenario. Physician training, patient’s racial and cultural background, personalities, and expectations all come into play as their relationship evolves. One recurring theme in the study cited above was “sensing that you are in good hands.” Some mentioned that their trust developed from knowing the sheer amount of training required to be a medical provider. Other patients pointed out that being desperate, or having few other options, accelerates the formation of trust.

The Trust Project at Northwestern emphasizes the role that vulnerability plays in forming trust. Generally, once we come to trust someone, we open up to them; we expose vulnerability. In the healthcare system, it works backwards: being sick, worried, or simply confused by jargon (this is called information asymmetry), the patient often begins her relationship with her provider in a state of vulnerability.

Trust can also vary in different facets of the healthcare system. When we say that a patient has mistrust in the healthcare system, are we referring to his relationship with his provider, institutions like his hospital and insurance company, or the notion of Western medicine to begin with? One study suggests that repeated interactions are a key to building trust, and that patients do not see their providers as interchangeable. These findings suggest that we should enhance continuity, not just access.

Patients with low health literacy may reveal trust in a number of ways. One extreme is blind faith in the expertise of the provider, and another is mistrust and suspicion. One study found that blind trust in physicians was stronger in patients who were older, perceived their prognosis to be uncertain, or sometimes of low SES. Trust in the healthcare system tends to be lower among racial minorities, due to a history of unethical treatment. Could race moderate the relationship between SES and trust? Can these two extremes be reconciled, or even coexist in a single patient?

Read Part II here.

Sources:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2696665/

http://bmjopen.bmj.com/content/2/5/e001389.short

http://www.annfammed.org/content/8/5/440.short

http://www.kellogg.northwestern.edu/trust-project/videos/michelson-ep-2.aspx

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4518638/