A few new movies have appeared in theaters recently that can be added to what is becoming a growing cannon of films that tackle the many facets and complexities surrounding issues in bioethics. Tonight, I saw one of them. This inspired me to compose a list of recent films (plus a classic or two) that help us better understand the medical humanities and perhaps, ourselves.  These movies depict individuals answering the very personal questions of patient autonomy, “What do I want to happen to me, to my body for the sake of my health or medical care?”

1. Seven Pounds (2008). After a profound life experience, develops an extremely altruistic view towards organ donation, and actively sets out to assist individuals in need of organ donation. On one level, this film allows us to follow the lead character as he deals with his untreated situational depression, while it also chronicles his experience with living donation.
2. John Q (2002). The lead character of this film, devises an unconventional solution (similar to that of the lead in Seven Pounds) to obtain the organ needed for his ailing young son. In addition, to patient autonomy, this film deals with issues of distributive justice and access to care.
3. The Soloist (2009, now playing). Based on true-life events, this film is a thoughtful and realistic examination of how Ayers who is chronically ill defines quality of life for himself. It goes further to show the development of a friendship between the lead characters
   

   opens in June

   and how that friendship forces Lopez to accept Ayers on Ayers’ own terms. This was a very moving story of patient autonomy and mental illness.

4. My Sister’s Keeper (2009, opens June 26). An adolescent girl undermines her parents when she decides she’s old enough to determine exactly what she wants to happen to her own body. In addition to patient autonomy, this movie also deals with pre-implantation genetic diagnosis.
5. Steel Magnolias (1989). This classic ‘chick flick’ examines the relationship between a mother and her adult diabetic daughter. The candid depiction covers issues of patient autonomy, organ donation, withdrawal of treatment, and grief.

Definitely check out these movies, in addition to being entertained, you just might become a more sophisticated and informed patient in the future. At the very least, it will inspire you to give pause and consider how you define quality of life, what treatments you might want or what treatments you might refuse in preservation of that quality of life.

by Bruce Beattie

By executive order, the ban against federal funding for stem cell research has been removed. What are the implications for biomedical research in America? How much ground have we lost in our progress towards treatments and cures in traumatic brain injury and Parkinson’s disease, for example. Are our systems of bioethical oversight robust and competent enough to handle the responsible application of this powerful technology? I’m curious to know just what you think, so leave a comment.

Subscribe to enBloom

The television drama ER has been delivering excellent stories around death and dying as well as the misadventures of the walking wounded for fifteen years now. After a long break, I have returned to faithfully follow it’s final season and it has not disappointed. The plot and multiple story lines of ER are quite complex and unfold over weeks so serendipity was probably the cause for last night’s episode to deal with the topic of kidney disease and kidney transplants on World Kidney Day. As I discussed in Wednesday’s post, the purpose of World Kidney Day is to increase awareness. The aim is to prevent chronic kidney disease by encouraging people to make choices that support healthy kidneys and get appropriate screening test for kidney function when necessary.

more about “The Story of a Kidney“, posted with vodpod

Yet, here at enBloom, we try to foster a culture of information that will empower the choices you make regarding your health and medical decisions. In an earlier post (Valentine’s Day/National Donor Day), I brought the importance of organ donation to your attention. In this ER episode, a family member struggles to come to a decision regarding organ donation. In my continuous quest to advocate for your autonomy as a patient. I encourage you to talk often and openly with your loved ones about your decision to be an organ donor. These are agonizing decisions for loved ones to make especially in the midst of grieving. Moreover, often the best candidates for organ donation were young, healthy, in-the-prime-of their-lives but just happen to roll into the ER on the heels of some traumatic and tragic event. By communicating and documenting your end-of-life decisions, you remove a great burden from the shoulders of your loved ones.

Enjoy this compelling episode of ER which so aptly illustrates all the emotions and the drama of life in kidney failure and organ donation.

Subscribe to enBloom Where You’re Planted

In the NYTimes.com article, In Search of a Good Doctor, Pauline Chen, MD surveys several fellow doctors to provide health care consumers and patients with guidance on selecting physicians but more importantly navigating health information available on the internet. She states:

And according to several of the doctors I spoke with, the amount of information available to patients will only increase in the future.

Throughout our conversations and e-mail exchanges, every one of the doctors stressed the importance of patients doing research and becoming an active part of the medical team. “This is a shared responsibility between the physician and the patient for the patient’s health,” said Dr. Ted Epperly, president of the American Academy of Family Physicians.

Dr. Lisa V. Rubinstein, president of the Society of General Internal Medicine, said that sharing in decision-making “will help raise the quality of care given by any clinician, because it will sharpen the focus on the key decision points and help the clinician put a plan in place that the patient understands and agrees with.”

It is very encouraging to hear more and more doctors supporting active patient participation in care. Such an atmosphere maximizes patient autonomy as well as the level of respect with which care is delivered.

Source:

In Search of a Good Doctor (Chen, P. (2009, January 8). In Search of A Good Doctor. [Electronic Version] The New York Times.)

Today’s post was inspired by a Denise Grady article I read in the New York Times Second Opinion column and the peer-reviewed article it summarized (see link below). Our main purpose at enBloom is to increase your literacy in health and medical issues and to empower you with tools to help you have productive conversations with your doctors and health care providers. Before you receive any major procedure in the hospital or even on an out-patient basis you are required to sign consent forms. These are legal documents that indicate you understand the procedure you are about to undergo and the regular risks of complications associated with that procedure. When teaching students health care ethics, I always impress upon them the fact that unless the patient truly understands the procedure and the risk, their job is not done. That is to say, you cannot have consent unless it is informed.

One of the reasons, we began to see the rise of centers of excellence in the last decades of the 20th century is because physicians recognized they could significantly decrease risk by increasing the volume of highly specialized procedures. Patients and health care consumers should also be aware of the fact that time and location of physician training has lead to variations in the way specific physicians treat specific conditions, a phenomenon referred to as practice patterns. This is one of the reasons why it is so important to seek a second opinion when you receive a serious diagnosis or you’ve been recommended to undergo serious treatment.

The peer-reviewed article, Should Informed Consent for Cancer Treatment Include a Discussion about Hospital Outcome Disparities from the Public Library of Science website discusses these very issues. It raises a controversial ethical question around which two groups of experts debate. Since a physician is obligated to do no harm to their patients as well as actively work to remove or reduce disease, pain, and suffering does it then follow that they are obligated to tell their patients if the best care available is indeed at another hospital or medical center? The discussion in the article was extremely provocative. Yet, it led me to another slightly related question. Now that we have documented evidence in the disparities of care among the various ethnic groups, do we take those into account when reporting risk for informed consent? If we currently do not, shouldn’t we do so if the consent is truly to be informed?

Learn more:

PLoS Medicine – Should Informed Consent for Cancer Treatment Include a Discussion about Hospital Outcome Disparities?.

Should Patients Be Told of Better Care Elsewhere?

First Fridays in First Person. In the following excerpt from a New York

electron micrograph image of HPV

Times article, Dr. Ben Daitz gives a personal account of treating patients with cervical cancer and the changing technologies available for prevention and earlier diagnosis.

” ‘Someone please help me with my daughter!’ the middle-aged woman announced in the waiting room of our clinic. ‘She’s in the back of the car and I can’t carry her.’

I followed the woman to her car. Her daughter, in her late 20’s, lay huddled under a blanket in the back seat. Her face was ashen and her body cadaveric, and when I picked her up, she stared at me with hollow, dull eyes as her bones rubbed against my arms. Her mother told me that she’d brought her daughter back on a plane from New York City, where she’d been a ballerina. I had never seen an adult patient so thin, so emaciated. My patient said she had pain in her abdomen and pelvis, and when I did a pelvic exam, I did not know what I was
feeling. I only knew it was very bad.

That was almost 30 years ago, and I was feeling the contours of a cauliflowerlike mass, a so-called fungating carcinoma of the cervix, a cancer every bit as bad as it sounds. It caused my young patient’s death several weeks later.”

In this commentary, Vaccine Prevents Cervical Cancer. So, What’s the Down Side?, Dr. Daitz conveys the devastating cost of cervical cancer and then proceeds to discuss the cost and benefits of a newly developed vaccine.

In the decades since, routine Pap test screening has been established to identify and diagnose changes in cervical tissue before it actually progresses to cancer. Moreover, nearly two decades of biomedical research has taught us that these changes and specifically cancerous tumors are caused by the Human Papilloma Virus (HPV). This is a sexually-transmitted virus without symptoms infecting upwards of 6 million men and women yearly. In 2006, the Food and Drug Administration (FDA) approved a vaccine that prevents two types of HPV (HPV 16 and 18 ) that cause 70% of all cervical cancers. The vaccine also prevents two types of HPV (HPV 6 and 11) that cause 90% of all genital warts. The prospect of protecting future generations of young men and women from HPV and young women from cervical cancer is truly exciting. But I agree with Dr. Daitz as he cautions against compulsory immunization. The existence of highly accurate Pap tests, condoms, and treatments for infections means that HPV infection does not guarantee certain death or disability as is the case with current infectious disease against which we currently require immunization by law. Society cannot allow technology to out pace its ethics. Mandatory HPV vaccination is an unnecessary violation of a patient’s right to autonomy—his or her right to refuse treatment. With appropriate education, we could significantly decrease the prevalence of HPV, if not eradicate the virus altogether. At this stage, however, it is inappropriate and unethical to sacrifice individual rights through compulsory immunization to accomplish this goal.

Source: statistics regarding HPV and cancer from the American Cancer Society website

Learn more: the National Library of Medicine Online Exhibit highlights HPV Vaccine development in Against the Odds: The Role of Science

December began with the 20th annual observance of World AIDS Day. Both the NY Times and the Washington Post ran articles discussing the potential benefits of mandatory testing in curbing the incidence (new cases) and prevalence (all existing cases) of the disease. The Washington Post article focused on implementing such a policy in the United States while the New York Times article examined an international perspective. Our Constitution constantly forces us to balance the rights of the individual against the rights of citizens collectively. It endows each of us (even those with disease) with the right to privacy. In addition, principles of bioethics state we also have the right to autonomy. That is, the right to to accept or refuse medical treatment for ourselves. The Post article used bird flu as a disease for comparison. Yet, the fact that, HIV (which causes AIDS) does not have the ability to infect people through casual contact seems to significantly diminish the argument for mandatory testing. Such a mandatory testing policy would violate individual rights to autonomy and privacy of health information. More importantly, well designed health communication campaigns for volunteer testing and aggressive preventive techniques could transform the culture regarding AIDS in America without sacrificing the rights of individuals.

Read the Our Country is Failing the AIDS Test from the Washington Post and A Breathtaking Aspiration for AIDS from the New York Times.