Understanding the Latino Patient with Cancer

by Beatriz Lorena Hurtado, Bioethics Program Alumna (MSBioethics 2014)

As a Latina working in healthcare I have always felt the responsibility to provide education about my culture, and to clarify cultural differences and misconceptions. It is always surprising to witness how eliminating misconceptions eventually translates into an increase in patient satisfaction, and less apprehension about cultural differences from the healthcare team. This is one of the reasons why, in my view, education on Cultural Competence in healthcare is probably the most appropriate way to avoid generalizations and achieve equality in healthcare.

Latinos currently constitute seventeen percent (17%) of the nation’s population, making them the largest racial and ethnic minority in the US. They are also amongst the fastest growing minorities the United States. Should current demographic trends continue, it is estimated there will be 41 million Latinos in the United States by 2020.

These numbers should not only indicate the rising presence of Latinos in the United States, but also highlight the need for developing pathways to improve language and cultural services in the healthcare arena.

This need is particularly in oncology: as the American Cancer Society notes, cancer is the second leading cause of death for Latinos. It is also important to add that the most common cancer diagnosis in Latino women is breast cancer, while prostate cancer is the most common diagnosis in Latino men (with colon, lung, melanoma, stomach, and liver cancer following closely behind).Therefore, as it happens with any chronic disease, the medical visits are usually recurrent and the treatments involve an extensive group of healthcare professionals.

As a Latina I believe there are three important characteristics of Latino cultural expressions, meanings, and value systems that warrant specific attention:

First, family is the foundation that supports life for Latinos in general. Medical decisions are in most cases a family affair. The presence of family signifies emotional support, empathy, and togetherness, and is always favored in a difficult medical situation. Moreover, if facing a difficult moment or vulnerability, like a cancer diagnosis, family support is at the top of the list of necessities of the Latino patient. Latinos place much of their identity and self-worth into the family structure and customs.

Although it is recognized that the Latin American family has undergone changes in its structure in recent decades, it is important to note that these changes haven’t shifted the sense of group, affective value, and financial support in the immigrant family. Latinos are gregarious, often moving in culturally-defined groups. They also identify themselves within their group and by the role they play in it. Failing to recognize the place family has in medical decisions for Latino patients could be viewed as a lack of acknowledgement of who they are as persons, and their position in the micro universe that is their family life.

Second, in the Latino culture, talking about death is commonly viewed as summoning it. Acknowledging death can be seen as giving up hope, limiting a patient’s chances of surviving and a threat to their recovery. This has obvious implications for conversations about death, end-of-life issues, living wills and advance directives. Also, because of the substantial Catholic background and deep religious roots, most Latinos believe that talking about the possibility of a negative outcome is an expression of limited faith in God. It can symbolize doubt on God’s abilities to heal the sick.

Third, even though Latinos share many characteristics, they are also a very diverse group. They are united in their diversity. For instance, a Latino patient from South America may have a specific cultural response towards the healthcare team (e.g., a more entitled behavior) that may be very different from the cultural response of a Latino patient from Central America (e.g. a more humble and unassuming attitude).

Despite all the similarities that unite Latinos (language, religion, family union, etc.), there are several particular cultural conventions that vary depending on the country from where the person comes. Identifying that the patient may speak Spanish or may come from Latin America represents merely the basic steps in beginning a successful communication, but it does not contribute significantly towards building a strong a fruitful rapport with a Latino patient. To achieve this, establishing a conversation free of narrowly defined cultural assumptions is crucial. Even though Latinos share many characteristics, like the general value placed on family and the inclination to avoid discussions of death, there is a rich diversity of Latino cultures and healthcare providers must make it a point to avoid generalizations.

In the context of the Latino culture, to achieve a culturally competent treatment is to understand their culture and demonstrate respect for their differentiating traits while they are in treatment. This means providing care that recognizes and caters to those cultural differences. By acknowledging their gregarious behavior towards family and group, by attributing their reluctance to plan for the worse to their unceasing hope in their interpretation of death and dying, and by respecting the differences among these common traits, the healthcare team can provide culturally competent care. In turn, this will help the patient feel acknowledged and less intimidated by the medical environment, resulting in a more effective relationship, better care, and better outcomes.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Rage Against the Dying of the Light

by Sean Philpott, Director of the Center for Bioethics and Clinical Leadership

Until last week, most people had never heard of Lisa Bonchek Adams. A devoted wife and mother to three young children, Ms. Adams has been battling end-stage cancer for the last seven years.  This 44-year-old Connecticut woman has chosen to fight her disease tooth and nail, including enrolling in a clinical trial at Memorial Sloan Kettering Hospital in New York City.

For the last couple of years, Ms. Adams has been blogging and tweeting about her fight against the disease.  As of last night, her Twitter feed had over 12,000 followers, the majority of whom ardently support her.

Lisa is not the first person to write publicly about her fight with illness. In fact, people have been doing so for centuries, originally through print memoirs but increasingly through blogs and social media websites like Facebook and Twitter.

For many, doing so provides some level of comfort, helps them find the courage they need to make difficult treatment decisions, and gives them the chance to help others facing similar life-threatening challenges.

So what makes Ms. Adams and her public struggle with cancer so unique? Why am I, as an overworked and underpaid professor of bioethics, now following her story so closely? The reason is that she recently came under attack by two well-known journalists:  Emma Keller, a lifestyle columnist for the Guardian (a British newspaper), and her husband Bill Keller, former executive editor of the New York Times.

In an article that has since been pulled from the Guardian’s website, Ms. Keller questioned Lisa’s decision to publicly document her fight against cancer. Perhaps it was the sheer volume of tweets that disturbed Ms. Keller; since opening her Twitter account, Lisa has posted over 165,000 tweets about her clinical experiences. But whatever the reason, Ms. Keller elected to write a scathing piece about Lisa.

Ms. Adams’s alleged crime is that of TMI – providing ‘too much information’ about her struggle against a life-threatening illness. For example, Ms. Keller wrote that Lisa’s frequent tweets are the “grim equivalent of deathbed selfies, one step further than funeral selfies”. At least according to this London-based lifestyle writer, documenting your fight against cancer is on par with the disturbing trend in which teenagers (and occasionally world leaders) take photos of themselves at memorial services for dead relatives and friends.

Shortly thereafter, Ms. Keller’s husband Bill penned a similar op-ed piece that appeared in the New York Times. In it, he contrasts Lisa Adams’s decision to viciously (and publicly) fight her disease with his elderly father-in-law’s choice to refuse aggressive treatment in favor of palliative care and a peaceful and largely pain-free death. In doing so, he described his father-in-law’s passing as “a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.”

The insinuation, it seems, is Lisa Adams’s refusal to die without a fight is somehow undignified. Moreover, that her decision to explore novel treatment options, including enrolling a clinical trial, not only gives false hope to those in similar situations but also denigrates the memory of those who chose not to pursue a similarly aggressive approach.

Now I myself have frequently written about the high cost of medical treatment, particularly at the end of life. I am also a fervent advocate of hospice and of palliative care for those suffering from terminal illnesses. That does not mean that I agree with the Kellers. In fact, I don’t.

As Americans, we do need to starting talking more openly about death and dying. As individuals, we need to have the difficult conversation with our friends and family about end-of-life treatment and care. As a society, we need to think about what a so-called ‘good death’ looks like and make sure that we have policies in place — at the institutional, local and national level — to ensure that everyone who dies does so well.

That Lisa Adams has decided to fight her illness rather than succumb is her prerogative, and she draws comfort and support from sharing her experience with others. Some, such as Bill Keller’s father-in-law, chose a different and less public path. Their choice is equally courageous and they no doubt drew comfort and support in other, more private ways.

The Welsh poet Dylan Thomas once wrote: ” Do not go gentle into that good night / Rage, rage against the dying of the light.” No truer words have been written. Lisa Adams expresses her rage publicly, by documenting her fight against cancer and providing encouragement for others who chose a similar path. But some people choose to do so privately, by spending time with family and friends and building long lasting memories that will survive even after they are gone.

What the Kellers fail to appreciate is that every death is different. Everyone has an opinion of what a ‘good death’ is, and that opinion should be respected and honored. So long as that is achieved, there is no right or wrong way to die.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 16, 2014. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Media Myths about Mammograms

by Sean Philpott, Director of the Center for Bioethics and Clinical Leadership

Like most married couples, my husband and I have a morning routine. I tend to get up first, shower, get dressed, get a cup of coffee, and make lunch. Dan is a little slower to get started, and likes to listen to a program like Good Morning America or the Today Show while ironing our shirts.

Normally the television is just background noise to me, but last week I actually stopped and listened in disbelief as ABC News correspondent Amy Robach revealed publicly that she’d been diagnosed with breast cancer. She underwent a double mastectomy later that week.

Ms. Robach’s diagnosis came after an on-air mammogram conducted in early October as part of Good Morning America’s cancer screening promotion, timed to coincide with National Breast Cancer Awareness month. The 40-year-old journalist had not undergone a screening exam before, but was pushed to do so by her producers and by fellow correspondent and friend Robin Roberts, herself a cancer survivor. According to Ms. Robach, by pressuring her to get a mammogram (the first ever to be nationally televised no less), Robin Roberts “saved my life”.

This is all well and good, and I wish Ms. Robach a swift recovery. At the risk of sounding cold-hearted, however, let me explain exactly what is wrong with this story.

The benefits of hindsight aside, Amy Robach should have never received a mammogram in the first place. According to guidelines issued by the US Preventative Services Task Force, an independent and non-partisan group of healthcare experts, most women should not undergo regular mammography until they are at least 50 years old. That Ms. Robach was pressured to do for the sake of television ratings is problematic to begin with, despite the apparently positive outcome. Worse yet is the false narrative about the benefits of routine cancer screening that the story creates.

For women with no family history of breast cancer, the likelihood of developing it is 1 in 70 for those in their 40’s. That rises to 1 in 35 for those in their 50s, and to 1 in 25 for women in their 60’s. Those seem like pretty high odds, so why shouldn’t every woman be screened annually? They shouldn’t because routine mammograms for women like Ms. Robach actually yield little benefit. But they come with considerable expense and risk.

Despite the possibility of developing cancer at a young age, conducting annual mammograms for all women in their 40’s will not significantly reduce the number of cancer-related deaths. In fact, only a single death will be prevented for every 2000 women so screened. The cost of routing testing aside, many of these women may also be harmed. Consider, for example, the physical and psychological toll of false test results.

Although mammography is the best screening tool we currently have, it is also notoriously inaccurate. On average, it misses 20-30 percent of all cases of cancer (so called false negative results).

Mammography also has a high rate of false positives: findings that look like cancer but are later determined to be benign. The chance that a woman will have a false positive result increases with every mammogram. According to the Susan G. Komen Breast Cancer Foundation, after just 10 yearly mammograms more than half of women will receive a false positive test result. They will only be determined to be cancer free after additional testing, including invasive biopsies.

Moreover, the psychological effects of a false positive can be profound. One recent Danish study found that women who received such false results suffered from anxiety and depression. These symptoms continued for years, even after cancer had been definitively ruled out. Inconvenient facts like these do not make for good television. Heartwarming stories of survival do.

By coming forward with her own tale of diagnosis and treatment, Amy Robach hopes to “inspire every woman who hears it to get a mammogram, to take a self exam. No excuses. It is the difference between life and death.” It probably will inspire more than a few women to get mammograms. Just as Katie Couric’s live colonoscopy led to an uptick in the number of people being screened for colon cancer, so to will Ms. Robach’s on-air mammography lead to more women undergoing that procedure. A few lives may even be saved.

Despite this, Amy Robach’s story is likely to do more harm than good. It will perpetuate the myth that more screening, starting at an earlier age, is a winning strategy in the on-going war on cancer. It will continue to confuse patients and clinicians alike about the potential benefits and limitations of routine testing, and contribute to the problem of overdiagnosis and overtreatment.

Universal screening programs, as promoted by Ms. Robach and her producers at Good Morning America, are not the answer. Such programs save few lives and come at great cost, despite what media reports might suggest.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on November 21, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Lara Croft: Cancer Activist

by Sean Philpott, Acting Director of the Center for Bioethics and Clinical Leadership

In an Op-Ed piece published in Tuesday’s New York Times, actress Angelina Jolie revealed publicly that she had undergone a prophylactic double mastectomy — removal of both breasts — in order to reduce her risk of developing cancer.

Ms. Jolie had a reason to be concerned. Genetic tests showed that she carried a mutation in a gene known as BRCA1, a change in her DNA that greatly increased the likelihood that she would develop breast or ovarian cancer sometime during her life. Cancer-causing mutations in the BRCA1 gene (or a related gene known as BRCA2) are rare, but account for a majority of familial cases of breast and ovarian cancer seen in the US.

Ms. Jolie likely inherited this mutation from her mother, who died of cancer at 56. Based on her test results, doctors estimated her lifetime risk of developing cancer at approximately 87%, probably at an early age. By contrast, the average woman in the US has a lifetime risk of 12%, with diagnosis usually coming later in life.

The decision to remove both breasts could not have been an easy one, particularly for a starlet who is famous for playing buxom femme fatales in movies like Lara Croft: Tomb Raider, Mr. & Mrs. Jones, and Salt. Ms. Jolie admits as much in her Times article. A prophylactic mastectomy doesn’t completely eliminate her risk of breast cancer, only reduces it by about 10-fold.

She is also at increased risk of developing ovarian cancer, but elected not to have her ovaries removed. A prophylactic oophorectomy, as that procedure is known, is an invasive procedure with long-lasting physiological effects, including early menopause, cardiovascular disease, osteoporosis, and loss of sexual function.

With recent advances in reconstructive surgery, there was no need for Ms. Jolie to go public. She wouldn’t have been the only Hollywood star to get breast implants, just one of the few that had a medical reason for doing so. Barring release of her medical records, a serious breech of privacy, no one would have been the wiser.

So why speak out? According to the actress, she wrote about her experience so that other women could benefit. Specifically, so women with a familial history of cancer could get tested for mutations in the BRCA1 and BRCA2 genes and, if necessary, to “take action.”

Having a spokeswoman like Angelina Jolie increase public awareness of breast cancer is good. It is a laudable goal, but it also one that worries me. Women who look to Angelina as a role model might rush to be tested for cancer-causing genes. However, the results of genetic testing have profound consequences — physically, psychologically and for future insurance coverage. In addition, the tests in question are very expensive. A single test costs approximately $3,000, and may not be covered by existing health insurance plans. Many women simply cannot afford to do what Angelina did.

These exorbitant testing costs are due to the fact that a Utah-based company called Myriad Genetics has patented both the BRCA1 and BRCA2 genes. Myriad currently holds a monopoly on testing for breast and ovarian cancer-causing mutations. The legality of this monopoly had been questioned, most notably in a US Supreme Court case challenging a private company’s right to patent human genes. But until the Court’s ruling in October, the company has every legal right to charge what it believes the market will bear.

Given this, only women with a clear familial history breast or ovarian cancer should be tested. But figuring who has such a history is not an easy task. As many as one in eight women in the US will develop breast cancer at some point in their lives, making it likely that most people will have a sister, mother, aunt or grandmother with a diagnosis. People can have as many as two, three or even four female relatives with cancer. But most of these cases will not be associated with mutations in BRCA genes. It takes a trained genetic counselor or skilled physician, using a detailed family tree, to know for sure whether or not a woman is a potential carrier of a mutant gene.

Moreover, for those unlucky few who do carry a mutant copy of BRCA1 or BRCA2, a prophylactic mastectomy or oophorectomy may not be the answer. Ms. Jolie made a carefully considered and informed decision, in consultation with a highly trained team of doctors, to undergo this radical procedure. But there are other less effective but less expensive and less invasive options, including tamoxifen or regular monitoring, that may be the better choice for many woman (particularly those that lack the savvy and resources of Angelina). I’d hate to think that they rushed to have their breasts removed simply because their favorite starlet had done the same.

None of these concerns I voice is meant to take away from what Angelina has done. Speaking publicly about her decision is a courageous thing to do. But the take-home message for women is far more nuanced than get tested and get treated.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 16, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Patenting the Building Blocks of Life

by Michelle Meyer, Bioethics Program Faculty

Imagine a world in which useful inventions, such as drugs, are immediately freely available to all. This world may seem attractive, but the process of invention is often costly and fraught with risk of failure. If everyone else could free ride off of the hard work of the inventor, no inventor might have sufficient incentive to engage in innovation in the first place, and then no one would have the benefit of the invention.

Now imagine a polar opposite world in which inventions are forever the exclusive property of the inventor. Someone invents, say, a saw for cutting down trees, and if you want to cut down trees, you need to either pay the inventor for a license to use his saw or invent your own, different mechanism for cutting down trees. In this world, inventors who collect licensing fees would have ample incentive to invent, but as monopolies, they would hold their inventions hostage to any price they chose to charge.

The centuries-old U.S. patent system is designed to strike a balance between these two worlds, with maximal innovation its goal. By giving inventors property rights in their inventions, the patent system creates incentives to engage in useful innovation that will improve human welfare. And by limiting those property rights to 20 years and requiring the inventor to adequately describe the details of their invention, the patent system ensures that others may use and build on it.

The U.S. Patent and Trademark Office (PTO) issues patents to purported inventors for things (“compositions of matter”), methods for making things, or methods for using things. But disputes often arise over the validity of patents between purported inventors and third parties, which disputes courts often must ultimately resolve, setting precedent for other patents in the process. To be valid, the subject matter of the patent must be novel, useful, and non-obvious. But an even more basic requirement is that the inventor’s claims must concern patentable subject matter. The scope of patentable subject matter is quite broad, encompassing “anything under the sun that is made by man,” according to the legislative history of the 1952 Patent Act, except for (according to past Supreme Court cases) abstract ideas, laws of nature, and natural phenomena.

On April 15, the U.S. Supreme Court heard oral arguments in Association for Molecular Pathology v. Myriad Genetics, a case that will test just how broad the scope of patentable subject matter is by answering question: Are human genes patentable? At issue in the case is the validity of Myriad’s patents on isolated DNA from two human genes, known as BRCA1 and BRCA2. Women who have mutations in one or both of those genes, as most readers know, have a significantly higher chance of developing breast or ovarian cancer, and perhaps other kinds of cancers as well. No one disputes that both the method by which Myriad isolates DNA fragments from human blood is patentable (although Myriad did not invent this method, which has long been ubiquitous in molecular biology and is off-patent). Nor does anyone dispute that the use to which Myriad puts the isolated DNA — a particular disease risk prediction test — is patentable.

But are the isolated DNA fragments themselves patentable subject matter? All inventions are ultimately derived from nature. No one disputes that although a naturally occurring tree is not patentable, a wooden baseball bat made from that tree is, for instance. But how closely may a purported invention resemble nature and still be patentable?

The ACLU, patients at risk for breast and ovarian cancer, and various medical associations have asked the federal courts to declare that neither isolated DNA nor so-called cDNA — synthetic DNA that is complementary to and built off of naturally-occurring RNA — is patentable but are instead simply natural phenomena. Isolating fragments of DNA, they say, simply involves removing from the body a portion of naturally occurring DNA. Just as sawing off the branch of a tree does not entitle the sawer to a patent on either the tree or the branch, they say, removing a fragment of DNA does not entitle Myriad to a patent on either the isolated fragment or the embodied gene.

Turning to the innovation policy behind the patent system, the challengers argue that Myriad’s patents have prevented standard clinical testing of the BRCA genes, inhibited research on these genes, and prevented patients from accessing their own genetic information. They further argue that Myriad’s real contribution wasn’t any invention at all, but, rather, discovering the natural correlation that exists between cancer and specific gene mutations. They say that there are sufficient incentives for academics and others to pursue this kind of knowledge without the promise of a composition patent on genes. Those incentives include recognition and acclaim as well as process and use patents. Justices from both the “conservative” and “liberal” wings of the Court were clearly concerned about the effects on innovation of invalidating Myriad’s patents, and they seemed to find the latter, but not the former, incentives a compelling reason to think that these kinds of important discoveries would continue to be made.

Myriad, of course, disputes each of these points — as do half of the judges who have previously ruled on this case. The Supreme Court has not issued an opinion on what constitutes patentable subject matter in a composition patent in over thirty years, and this older jurisprudence itself is less than clear. In the absence of clarity, when determining whether a purported invention is sufficient different from natural phenomena to be patentable, some judges look to differences in structure, while others look to differences in function. The district court in this case, for instance, held that neither DNA nor cDNA is patentable since the function of both is the same, whether it exists inside or outside of the body. At the appellate level, one Federal Circuit judge, looking solely to structure, argued that DNA is patentable because isolating the DNA from the body necessarily changes its chemical structure. Another judge, arguing that the structural changes here occur only by virtue of the fact of Myriad possessing the DNA outside of the body, concluded that Myriad’s patents must fail. (Challengers in the case similarly note that the very utility of the isolated BRCA genes in predicting disease is that they are in fact identical, in all relevant respects, to the genes as they naturally occur in the proband’s body). Finally, the third Federal Circuit judge argued that both structure and function are relevant and found that Myriad’s patents passed muster on both counts, primarily because this position was consistent with PTO precedent.

On the matter of innovation policy, Myriad notes that it spent some $500m on developing its patents, and that invalidating those patents is likely to set a precendent that will stifle innovation throughout the biotech industry. Some scholars also argue that it is mere “myth” that 20% of the human genome has been patented, and that claims that “gene patents” have impeded medical research and practice are “wildly exaggerated.”

The Supreme Court permitted the federal government to appear during oral arguments. There, it took a middle approach that a majority of Justices seemed to find palatable during Monday’s arguments. Under this theory, although mere isolated DNA fragments are simply natural phenomena and hence not patentable, cDNA, which is man-made, is. Deciding whether an isolated gene fragment (or cDNA) is sufficiently different from that gene as it exists in its natural state ultimately involves making a choice to draw a line somewhere along a continuum marked by the tree at one end and the baseball bat at the other. Rather than allowing such metaphysics to rule the day, the Court may well lean on the purpose that patent law was designed to serve and look to the likely consequences on innovation of its decision. Although the scientific reality is a bit more complex than the DNA/cDNA distinction would suggest, some have argued that the distinction does have the significant benefit of roughly tracking important innovation policy concerns.

The Supreme Court’s ruling is expected in June.

[This blog entry is an original contribution by Prof. Meyer. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]