Will Ariadne Lead Us Through the Maze of End-of-Life Healthcare?

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to http://bioethics.uniongraduatecollege.edu/blog/

 

by Richard Koo, Bioethics Program Alum (MSBioethics 2011) and Adjunct Faculty

About four years ago, Susan D. Block, M.D. posted a blog on Harvard Business Review’s website as part of a series of writings focusing on innovation in health care. In her blog, she bemoaned the “lousy job” doctors do in communicating with patients when it becomes apparent that additional treatment and technology will fail to stave off death. Among several other proposals, she suggested that standards for appropriate documentation of end of life discussions should be developed, promulgated, and used as reportable indicators of quality care. To carry out that innovation, she proposed that “all electronic medical record systems would be expected to support documentation of the patient’s health care proxy, values and goals” and “a broadly-agreed-upon definition of populations for whom these discussions and documentation are appropriate would be developed.”

Dr. Block is no stranger to the subject of end of life communications between doctors and patients. She participated in a number of panels and has authored articles on the subject since the 1990s. She also did not wait for the medical profession to follow through on her proposals. As Director of the Serious Illness Program at Ariadne Labs, Dr. Block spearheaded the development of a system (the “System”) to assure that doctors caring for seriously ill patients can develop competency in communicating with their patients so that the patients “can live with their serious illness and into the last stage of life with dignity, control and a sense of peace.” The System aims to train physicians in identifying appropriate patients for such communication, determining the right time to initiate the serious illness conversation, engaging in serious illness planning, helping patients discuss their end-of life preferences with their families, and documenting those plans and preferences in the patient’s electronic health record.

Presently, Ariadne Labs is evaluating the outcomes of the System through a series of clinical and implementation trials measuring outcomes in oncology, primary care, nephrology, chronic illness, surgical and emergency settings and adapting it to culturally diverse populations. The plan is to launch the System nationally in the fall of 2015 through a collaborative of approximately 20 health care networks to test it in different populations across the country.

Even before System launch, I’ve heard some potential concerns about the System from health care professionals who work with seriously ill patients day to day:

Pushback 1: “Discussions with patients with serious illness near the end of life are intensely personal and depend on an individual’s health care trajectory, views on life, death, and religion, financial situation as well as family dynamics. No standardized set of conversation guides, scripts, checklists and reminders can be practically useful.”

Counterpoint: “Standardized” doesn’t necessarily mean one size fits all. Though the System hasn’t yet been publicly released, based on Dr. Block’s body of work, my bet is that the System will direct physicians to take into account individualized variations in patient background, prognoses, situations and preferences. It should also help the physicians structure their communications according to those variations.

Pushback 2: “The reason why the medical profession does a “lousy job” in end of life communications is because many doctors have little motivation or interest to get good at it. Changes to the U.S. health care delivery system of a more fundamental nature have to be made before the medical profession current approach to communications with seriously ill patients will change.”

Counterpoint: So what are health care professionals supposed to do: sit on their hands until fundamental changes happen?   Communicating with patients is an integral part of the provision of health care. Health care professionals have an ethical imperative not to do a “lousy job” in that regard, whether or not these improvements are financially rewarded.

Pushback 3: “The medical profession would be better off leaving the task of difficult discussions near the end of life to those who presently deal with it best, namely palliative care physicians, nurses and nurse practitioners, hospice care specialists, social workers and patient advocates.

Counterpoint: One of the driving forces behind the development of the System is to raise the recognized standard of care of all physicians who treat seriously ill patients. Leaving the task of having appropriate end of life planning and communications in the hands of a cadre of specialists does nothing to address the “lousy job” physicians do that Dr. Block bemoaned. Any improvement in serious illness communications and the heightened sensitivities that the System might help bring about would also enhance the prospects that physicians will work collaboratively with the rest of the health care team to improve patient care near the end of life.

From a broader view, these potential concerns about the System seem symptomatic of the threat that innovative ideas present to the status quo. Personally, I’m excited about the possibilities of the System, in part because of my great respect for Ariadne Labs and its leaders, including Executive Director Atul Gawande, M.D.

[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.]

Should Medical Staff ‘Google’ Patients?

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to http://bioethics.uniongraduatecollege.edu/blog/

 

by Brandon Hamm, Bioethics Program Alum (MSBioethics 2012)

On several occasions, a new admission or psychiatric consultation has been accompanied by patient information that was “googled” by nursing or consulting practitioners. On some occasions, the ‘googled’ information has admittedly been helpful for refining diagnosis and management. On other occasions, it has seemed unnecessary for patient care. HIPPA does not protect information publicly available on the internet, but is it ethical for medical staff to “google” their patients?

The first time that I personally ran into this issue was during a psychiatric consultation requested for suspected factitious disorder (patient attempting to deceive by producing/providing false symptoms). The patient presented as a new patient (to our geography and institution) with shortness of breath and chest pain. After an extensive workup, the medical team was puzzled that the patient’s symptoms did not match his objectively normal physiology. The clinical next-steps under consideration were invasive. The medical team was not yet able to obtain previous records from outside hospitals and the patient declined consent for collateral information. So the team “googled” the patient. We found a forum accusing the patient of inducing arrhythmias for medical attention and regularly committing social/financial frauds. Later, records were later obtained from an outside hospital that revealed a history of hospital-hopping and recurrent malingering /factitious behavior resulting in medically unnecessary procedures.

In this case, the “googled” information decelerated the invasive (significant risks) trajectory of the patient’s care. This also facilitated better management of the building conflict between the patient and the frustrated medical team. In this case, “googling” produced beneficent, or at least non-maleficent results. And these would be the typical justifications for “googling” a patient, but it is much harder to claim that it respected patient autonomy. Perhaps more importantly, I worry about what impact “googling” has on trust in the patient-physician relationship.

Despite public attention from Haider Warraich’s New York Times article “When Doctors ‘Google’ Their Patients”, the ethics of “googling” patients has received scant attention in bioethics literature. What consensus there is deems as unethical “googling” for non-clinical purposes. When “googling” is used as a clinical tool, there remains some disagreement. Volpe et al (2013) argue that “googling” patients is bad practice because it encourages providers to withdraw from patient relationships, can damage trust, and invades patient privacy. George et al (2013) point out searching is legal and not considered a breach of privacy for employers screening applicants. Consequently, this group proposes that, at times, it is irresponsible not to “google” patients when traditional information sources (patient, patient medical record, previous providers) are exhausted or unavailable. Various commenters (Krischner et al, 2011) point out, however, that information obtained on the internet is of variable accuracy, and using it will consistently break trust and rapport when disclosed to the patient.

“Googling” for patient information is somewhat different in psychiatry than it may be in other areas of medical practice. A patient’s social circumstances, criminal history, attunement with reality, and even provision of truthful information are clinically pertinent for psychiatrists to perform accurate diagnosis and management. Since this information (with variable accuracy) may be readily available on the internet, temptation to “google” patients may be strongest for psychiatrists. A patient’s posted suicidal thoughts or homicidal threats are clearly of clinical significance. And these may not be available in the normal course of care. For example, patients with acute paranoid psychosis are often very protective of even the most basic personal information. Moreover, concerns about compromising patient trust may be blunted in psychiatry—psychiatrists are accustomed to damaging rapport when admitting patients involuntarily who are a significant danger to self or others.

Along with others, I believe that practitioners should never “google” for clinically irrelevant patient information. While it may be acceptable to “google” new colleagues and new friends, the relationship with a patient should be understood differently. “

Googling” for clinically relevant information should only be undertaken after a clear articulation of the reasons for “googling” and the necessity of the information that is being sought. Clinical information should ideally be obtained from the patient, medical records, previous providers, and patient- permitted others. In cases when these resources are exhausted /unobtainable, and significant patient benefit/harm is at stake, practitioners should only look to information obtained from the internet as a last resort. Some guidelines for psychiatrists were proposed by Clinton et al (2010). Specifically, these guidelines encourage the psychiatrist to consider his or her clinical intention, the potential for trust impairment, possibly obtaining consent for the search, and the impact of revealing obtained information to the patient or in documentation.

What we don’t have here is a clear algorithm for determining when it’s okay to “google” a patient and when it’s not. And so I wonder what you’re experiences have been and when you think it’s appropriate.

[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.]

Caveat Scholasticus

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to http://bioethics.uniongraduatecollege.edu/blog/

 

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

Economists talk a lot about scarcity. Scarcity occurs when we have fewer resources than are necessary to fill our basic needs and wants. Price is usually a good indicator of scarcity. Despite the recent short-term glut of oil, for instance, increasing demand and decreasing supplies of fossil fuels means that gasoline prices will inevitably rise in the coming years.

Ethicists like myself also talk about scarcity. Medical resources are often in short supply and must be rationed. The limited number of beds in the intensive care unit means that doctors must sometimes make difficult choices about which critically ill patients are admitted to the ICU and which are not. Vaccines may also be rationed. In the event of a serious flu epidemic, for example, the New York State Department of Health has a four-tiered vacccine allocation system, with critically needed staff such as doctors, nurses, police and firefighters given priority over grocery clerks, plumbers, mechanics, and stay-at-home dads. But one thing we never thought would be an increasingly scarce resource, at least in the medical setting, was privacy.

Everyone is increasingly concerned about privacy today, and rightfully so. In a progressively wired and interconnected age, there is little about a person that isn’t public knowledge. In fact, despite all our protestations, we as individuals are largely responsible for this loss of personal privacy.

We give up our personal privacy in a myriad of seemingly innocuous ways: posting status updates on Facebook and Twitter, writing blog articles, and uploading pictures to Instagram. Everything we say or do online leaves behind a trail of personal information that can be used by public agencies and private businesses to track us, watch us, and selectively market goods and services to us.

This is true even when it comes to our personal health. As mentioned before, much of this is our own doing. We comment about our various aches and pains online, use databases like WebMD to self-diagnose and self-treat minor illnesses and injuries, and purchase over-the-counter and prescription drugs using our CVS ExtraCare card. But one thing that we would never expect is that our conversations with our physicians and psychotherapists could also become public knowledge.

If anything, maintaining patient privacy and confidentiality is one of the key ethical obligations placed upon physicians. It is an obligation that has its roots in two millennia of Hippocratic practice, and it is the foundation of the doctor-patient relationship. Patients must feel that they can share all sorts of personal information with their physician, no matter how embarrassing or stigmatizing. This information is often necessary to ensure proper diagnosis, testing and treatment.

A sixteen-year-old girl who is experiencing pain when urinating, for example, may simply have a urinary tract infection. But she may also have a more serious condition like chlamydia, gonorrhea or some other sexually transmitted infection. If she is not willing to share the fact that she is sexually active, perhaps out of fear that her parents will find out, her doctor may inaccurately diagnose and treat her.

Maintaining patient privacy and confidentiality is so important that it has been put into practice and codified into law. Following a groundbreaking observation study of what doctors, nurses and medical students shared with each other in public elevators (spoiler alert: they shared way too much), many hospitals instituted strict policies about what can and cannot be said about patients in public settings. Anyone who has been to a hospital in recent years has undoubtedly seen the signs in the hallways and elevators reminding staff of this fact. Hospital staff can reprimanded and even fired for breaching confidentiality, as happened at Cedars-Sinai Medical Center after six employees inappropriately accessed the medical records of reality television star Kim Kardashian.

State and federal laws restrict the types of information that can be shared about patients. One key federal law, the Health Insurance Portability and Accountability Act (HIPAA), places strict limits on who can access or share your medical records or your health insurance and billing information. Doctors, hospitals, and insurance companies bound by HIPAA regulations can face severe civil and criminal penalties for violating this law, including fines of $1.5 million and prison sentences of up to ten years.

Unfortunately, this privacy law is rife with loopholes. HIPAA only applies to so-called ‘covered entities,’ such as health providers and health insurance companies. It does not apply to others who may have private health information, such as life insurance companies, employers, workman’s compensation programs, law enforcement agencies, or schools. This is a significant problem, as highlighted by a recent case involving a student at the University of Oregon.

That student was allegedly raped by three University of Oregon basketball players. In a Title IX lawsuit filed against the school, she claims that the school deliberately delayed its investigation so that the men could play in an important NCAA tournament.

So what does this case have to do with medical privacy? The University is using the student’s own medical records to defend itself in court. Because the student sought clinical treatment and psychological counseling at the University health clinic, her medical record belongs to the school. A federal law known as the Family Educational Rights and Privacy Act (FERPA), ironically meant to the protect the privacy of a student’s educational records, exempts campus medical records from HIPAA’s privacy rules.

Sadly, as morally repugnant as this is, the University is well within its legal rights to do this. Until laws like HIPAA and FERPA are amended to close these loopholes, we all should be more than a little wary. Students, for example, may wish to seek off-campus counseling or treatment in order to protect the privacy of their records, even if this means that they or their families may be forced to shoulder the cost. Meanwhile, the rest of us should be a little more diligent about the types of medical information we share with agencies and organizations not covered by HIPAA, and to pause for a moment before we complain about our neck aches and back pains on social media.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 12, 2015, and is available on the WAMC website. 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.]

When Doctors Discriminate

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

Most of you have probably never heard of Jami and Krista Contreras, a Michigan couple and the proud parents of a six-month-old girl named Bay. Shortly after Bay was born, the Contrerases began interviewing pediatricians, looking for one who practiced holistic medicine.

After meeting with nearly a dozen doctors, the newly married couple finally settled on Dr. Vesna Roi, a pediatrician in private practice with nearly 19 years of experience caring for children like Bay. On the morning of their first appointment, however, Dr. Roi refused to see them. The reason: the Contrerases are a same-sex couple.

In a handwritten letter delivered to Jami and Krista by another doctor at the pediatric clinic, Dr. Roi apologized but stated that, “after much prayer following your prenatal [visit], I felt that I would not be able to develop the personal patient doctor relationship that I normally do with my patients.” Dr. Roi’s religious faith, it seems, makes her uncomfortable around lesbian couples.

I actually have some sympathy for Dr. Roi. She clearly felt that she could not give the Contrerases, or their daughter Bay, the level of care that they deserved. In fact, a strong doctor-patient relationship is the key to quality health care. If Dr. Roi felt uncomfortable around Jami and Krista, or felt uncomfortable in asking them questions about those aspects of their personal lives that could affect the health of their daughter, she might overlook pieces of information that were important for Bay’s preventative care or therapeutic treatment. The Contrerases might also pick up (consciously or subconsciously) on Dr. Roi’s unease, and be less than forthcoming about their concerns or opinions. Given this, Dr. Roi was not the right pediatrician for Bay.

Vesna Roi also had the right to refuse the Contrerases as patients. For the most part, doctors are legally bound to treat patients only once they have entered into a care relationship. Even then the doctor can terminate the physician-patient relationship under certain circumstances (if, for example, a patient is non-compliant with treatment, the patient is abusive to providers, or the services sought are not covered by the patient’s health insurance). But the physician must provide a reason for terminating the relationship and must ensure continuity of care.

Ethically, Dr. Roi is on shakier ground. If she felt that she could not establish the necessary doctor-patient relationship with the Contrerases, she probably shouldn’t take them on as patients. But Dr. Roi should have been upfront with the Contrerases sooner, rather than waiting until the morning of Bay’s first pediatric appointment to inform them of her reluctance.

Moreover, while the American Medical Association (AMA) and other professional organizations recognize the right of clinicians to refuse to provide specific treatments if they are incompatible with a doctor’s personal, religious or moral beliefs, it’s hard to see how such “conscience clauses” apply in this case. Conscience clauses are meant to apply to specific medical procedures, most notably abortion and sterilization, rather than to specific classes of patients. If we allow a physician like Dr. Roi to reject patients on the basis of sexual orientation (whatever her personal, religious or moral reason), should we also allow a doctor to turn away patients who are Black or Latino? To turn away patients who are Muslim, Jewish or Atheist? To turn away patients who are women?

Of course we would never allow this. It is morally reprehensible. This is why the AMA, the American Academy of Pediatrics and other professional organizations that respect the conscience of physicians also make it clear that doctors should not refuse care based on race, gender or sexual orientation.

It would also be illegal to refuse a patient based on race, religion or gender under the federal Civil Rights Act of 1964. Sadly, this is not the case for sexual orientation or gender identity. Lesbian, gay, bisexual or transgender (LGBT) individuals are not protected by the Civil Rights Act, but rather by a patchwork of state laws and local anti-discrimination ordinances.

Only twenty-two states have laws that prohibit discrimination based on sexual orientation in “public accommodation” (e.g. businesses that serve the public, including pediatric clinics like Dr. Roi’s). Only fourteen states extend those same protections to gender identity. Michigan is not one of those states, so that what Dr. Roi did is morally questionable but it is not legally actionable. Had she lived here in New York, she could have been sued (unless one of the Contrerases had been transgendered, since the Empire State still allows discrimination based on gender identity).

We need these laws, both at the state and the federal level. Sure, people like Dr. Roi may be uncomfortable in dealing with lesbian patients or gay clients. But that’s not a reason to legally allow or publicly condone discrimination based on sexual orientation or gender identity.

The same arguments were used for years to justify discrimination against women, Black and Jews, until the Civil Rights Act forced people to challenge their biases and question their assumptions. It’s time to do the same for the LGBT community.

As I said before, Dr. Roi was not the right pediatrician for Bay. But she could be, once she learns to look beyond her personal prejudices and see the Contrerases for who they are: human beings with the same needs, fears, and hopes as her. But it might take a legal nudge to get Dr. Roi and others like her to take that first step.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on February 26, 2015, and is available on the WAMC website. 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.]

Can Safety, Freedom And Rationing Co-Exist For The Elderly?

by Susan Mathews, Bioethics Program Alumna (2014)

In a recent op-ed article, Dr. Ezekiel Emanuel, former Special Advisor for Health Policy to the Obama Administration, stated that he did not want to live beyond the age of 75. At that point, his productive life would be over and he become a burden rather than a benefit to his family, his friends and his country.

Whether or not you agree with Dr. Emanuel’s provocative statement, he raised an important point in his article: in order to contain health care costs, Americans will have to make difficult decisions about rationing of medical care. This is particularly true of end-of-life care for the elderly, which is a significant contributor to medical spending in the United States.

The problem will only become more acute in the coming years. The 65 and over population is projected to grow from 13 percent of the population today to 20 percent by the year 2030. In that same period, the population of the “old-old” (85+) will quadruple as the large baby boomer cohort reaches these advanced ages.

So as explicit rationing of medical care becomes a reality, how can costs be managed while still respecting the rights and safety of the elderly?

To read more, click here.

[This post is a summary of an article published on Life Matters Media on January 16, 2015. The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

 

The Case of Cassandra C: Finding Clarity and Responsibility as a Mom and a Bioethicist

by Amy Bloom, Bioethics Program faculty

I have been reading the latest news regarding Cassandra C., the teen with Hodgkin’s lymphoma who refused treatment but was forced into receiving it by a Connecticut Supreme Court ruling. As a mother and a bioethicist, these are the times when reconciling my personal opinions with my professional experience can be most challenging. Many of my “mom” friends were shocked and horrified by the image of a young woman being restrained to a bed, forced to undergo treatment. They had visions of a screaming pained girl, a mother helpless to save her child, and “big brother” dispensing poison to an innocent girl whirled through our collective mind.

From an ethics standpoint, it is generally wrong to force medical treatment on anyone, particularly when there are cultural and religious factors to be taken into consideration.  I am reminded of cases involving Christian Scientists who believe that any “traditional” medical intervention is contrary to their cultural and religious views.  Oftentimes, in cases involving a seriously ill child, parental rights are legally overruled and children are “forced” into treatment. Sometimes, the state may assume its parens patriae rights and substitute its own control over children when the natural parents appear unable or unwilling to meet their responsibilities, or when the child poses a problem for the community. Further still, the state can mandate treatment in order to assure proper care, as established by Jacobson v. Massachusetts in which the US Supreme Court upheld compulsory vaccination laws.

So, on the one hand we argue it is unethical to force treatment. On the other hand, we do sometimes make the decision to mandate care, particularly when children are involved. The question becomes: how does one manage the rights of children and of parents, while also maintaining the responsibility of the state to protect children?

First, we must consider what is in the “best interest” of the patient while still considering individual choice. Such cases are clearer when an outcome like death is imminent.  The case of the 29-year-old young woman with terminal brain cancer who refused treatment and moved to Oregon to end her life is a good example.  Most ethicists supported her decision, although there were some who disagreed with “ending one’s life” so directly.  In her case, this was a quality of life issue. Treatment provided no long-term benefit. It only prolonged her pain and suffering while delaying the inevitable. From a legal perspective, she was also an adult and capable of making her own decisions.

Cassandra’s case is different. Chemotherapy has a very good chance (~85%) of curing her. I personally struggle to understand how, when faced with these scientific facts, she chose to refuse care. I am troubled by the daughter’s decision-making process, and I wonder about the relationship between the mother and daughter. Some of the words and the reactions make me wonder what, in fact, the young woman believes to be true. As far as I can tell, there were no religious or cultural beliefs behind her renouncing medical care.  Seeing chemotherapy as “poison” is a bit odd, truthfully, and her claim to be “ready to die at 17” is even more disturbing, especially given that there is treatment available.

My ‘gut’ tells me that there is something askew in Cassandra’s belief system. The things she claimed to fear as a result of chemotherapy – loss of fertility, side effects to other organs – may not happen. Moreover, if she’s dead then these are no longer an issue. These side effects are also manageable. She can prevent a potential loss of fertility by freezing some eggs. The emotional and psychological effects of chemotherapy can similarly be managed with proper medical and palliative care.

Some bioethicists have suggested this was a missed opportunity for an ethics consultation. I agree, and then some. This was not just a missed opportunity for an ethics consultation, this was a missed opportunity for education, communication, support and compassion. This was a missed opportunity to reach out, inform, and support a teen navigating the difficulty of deciding how to treat a life-threatening illness. This was a missed opportunity to understand how she came to the notion that “chemo is poison” or that “being ready to die at 17” is something worth talking about.

For argument’s sake, let’s assume Cassandra made her decision to refuse treatment with all the facts.  Let’s assume that the medical providers explained all the details to Cassandra and she still chose to renounce care. We then have to ask about Cassandra’s mother, the woman who is still legally responsible for her care.  Why would she not choose the treatment most likely to cure her daughter? Some claim Cassandra’s mother showed great bravery, love and compassion in standing by her daughter’s decision to refuse care. I struggle with this. I feel that a mother’s responsibility is to advocate for the best care for her child. Unlike the 29-year old with terminal brain cancer, this treatment will save Cassandra’s life.

This case has caused me to reflect on the implications of a government that mandates the care I give (or choose not to give) to my child, under the assumption that I am of sound mind and can make proper choices about my child’s health.  I trust science, and I trust myself to be a critical thinker.  I believe that there are certain health care issues that should be mandated – vaccinations, for one – because the science is clear (and the information against it is completely faulty and warped by media sensations like Jenny McCarthy). I also believe that I have a moral responsibility to take care of my community, and that includes my child. Sometimes that will require me to do things that are uncomfortable, against my nature, and that may even cause my daughter pain, but it is still the right thing to do. Not for me, but for her.

So, in this case, I come back to a single question: Why?  If I could understand why Cassandra chose to forego chemotherapy, and if I could believe that her mother was thinking “in the best interest” of her child, then I would be more comfortable with the decision to refuse care. Until then, I hope that Cassandra lives a long and healthy life. I also hope that Cassandra, her mother, the medical establishment, and the bioethics community continue to have this conversation because our work here is certainly far from complete.

[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.]

It’s the Little Things That Matter

by Courtney Jarboe, Bioethics Program Student

“It’s not good news.

In a small exam room, we heard these words as my sister’s tears began to fall. No one wants to hear that you have breast cancer. Beyond the discussions of treatment options, however, there are a number of issues that clinicians need to consider. The following are recommendations based on my personal experience with my sister’s diagnosis.

1. A Folder

At the test result meeting, my sister received several medical record documents, along with various resources, pamphlets, journals, and business cards. However, there was no folder to house all of this. As we approached the close of the appointment, juggling the paperwork I ended up having to ask the physician assistant for a folder. Why is this a problem? First, these are important documents. The documents should be kept organized and together in one place. Keeping things together was not necessarily on the top of my sister’s list. By simply providing a folder, the clinicians would decrease the likelihood of her losing important information.

More important, most of the pamphlets and resources had ‘Breast Cancer this… Breast Cancer that…” on the covers. Often this was in big, bold headers.  What if she isn’t ready to brand herself in pink moments after receiving such devastating news? Does she want everyone in the waiting room to know her diagnosis as she walks out of the clinic? Does she want have her children come across these items accidentally before she is ready to share? By keeping these items in a folder, this gave my sister at least some degree of privacy about her results and diagnosis.

2. Appointments and referrals

 In my sister’s situation, she was told she that may want to meet with an oncologist, who was resident at the hospital. She was told that it would be easy to set the appointment, but to do this my sister would need to go back to the registration desk. Easy, right? Not necessarily. For a woman who just received such devastating news, setting up something as simple as an appointment may not be all that easy. Her schedule was the last thing on her mind, let alone how she was going to ‘fit’ cancer into it.

It wasn’t as easy as the clinician claimed.  My sister went to the registration desk and the staff member was apparently new. After much back and forth, my sister finally said (loudly, for everyone to hear) I have cancer.

Rather than send the newly diagnosed cancer patient up front to schedule these appointments, process these transactions in the exam room out of the public eye (and certainly not with a new staff member). Even though physician assistant or clinical might not have access to the scheduling system, couldn’t they quietly work that out with the registration staff and then circle back to the patient? During my sister’s result meeting the physician’s assistant stepped out of the room while the surgeon discussed her options for surgical procedures. During that time, they could have worked out the other details for the next appointment. Perhaps they could have gotten a list three of available times from the registration desk and circled back after the surgeon’s conversation.

3. Bras

After surgery my sister was in a predicament. One would think that it would be common sense to say hey, after surgery, your typical bra isn’t going to be useful or practical. However, she only received the usual wound care information sheet, not information about which bras are best following a lumpectomy. Give women a heads up. There are more important things to spend energy on than trying to find a bra.

Perhaps these recommendations are already in place in other hospitals and clinics, but my sister’s experience wasn’t as smooth as it could have been. Attention to the little things could go a long way to alleviate some of the unnecessary burdens that in my sister faced. More so, a woman’s trust and confidence in the healthcare community can be found even in the little things.

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