Culture and Organ Donation

With no means at present to replace or adequately repair vital organs when they fail except through transplantation, it is clear that organ donation to provide the organs for procurement is at present the best and most ethical means for saving lives. Since the need for organs to be used for transplantation is greater than what is currently made available, there is pressure on those who facilitate the procurement of organs to do a better job. To do a better job though can be a challenge. It depends so much on the willingness of the public to want to donate their organs after their death for transplant. For those who provide an advance directive of their wishes to donate, their directive is hopefully followed. Hopefully, because though there is in the United States laws requiring such a directive to be followed, there are stories of families, after the death of their loved one, rejecting the directive and the organ procurement organization following the family’s wishes. The organs that are obtained after death of a member who had no directive are obtained because the families have agreed to the donation. The challenge to those requesting that the family agrees to donation is that the request is made at a very difficult time, at a time of expected or often unexpected loss that has not yet been fully emotionally accepted. In addition families may be confused about what the procurement process is all about, particularly when matters of “brain death” and death after life-support has been removed is discussed.

How a family might react to a request for donation is also related to the culture of the family and the associated beliefs both through cultural background and religion. It is apparent that in some cultures, it is the family that first receives the bad news of their member’s illness and the family makes all the decisions. In some cultures, invasion of the body of the deceased would be considered desecration and in other cultures there is attention to the matter of what is called “death”.

The request is made more delicate by the way the request is made and the degree of skill, understanding of the family’s views despite a different cultural background of the person making the request.

I bring up this topic of the role of culture and beliefs in the process of organ donation because in most hospitals within the United States, the patients and families are multi-cultural and so it is not at all unusual for cultural factors to be involved in whether organs can be obtained. For more details of the effect of culture on organ donations and the considerations that those who request donations from patients or families must take into account,go to this
link.

Since, I see from my Sitemeter that I am getting visitors to my blog, not only from the United States but from around the world, I wonder how someone from Nigeria or South America or Japan or Saudi Arabia or other countries looks at organ donation after death and how their culture could affect their decisions either for themselves or as a family member. Any comments? ..Maurice.

Publicizing the Illnesses of Celebrities: Is it Ethical?

Barron H. Lerner, MD, PhD,who is Associate Professor of Medicine and Public Health at Columbia University Medical Center and is the author of “When Illness Goes Public: Celebrity Patients and How We Look at Medicine,” just published by Johns Hopkins University Press sent me today the following commentary. He raises some interesting ethical concerns regarding the consequences of such publicity. Read his thoughts on this subject below and you may also wish to read his book. Let me know what you think about the ethics of this not uncommon social experience. ..Maurice.


Celebrity illnesses have alerted the public to a series of diseases—think of Lou Gehrig’s amytrophic lateral sclerosis, Betty Ford’s breast cancer, Arthur Ashe’s AIDS and Michael J. Fox’s Parkinson’s disease. But these cases have also raised a series of challenging ethical issues.

For example, celebrities have often “pushed the envelope” as far as experimental treatments go. Few realize that Gehrig participated in a clinical trial of Vitamin E injections for his disease beginning in 1939. The civil rights lawyer Morris Abram received two types of experimental immunotherapy for treatment of his acute myelogenous leukemia beginning in 1973. And actor Christopher Reeve advocated aggressively for embryonic stem cell research, which he believed would lead to remarkable breakthroughs in the treatment of his quadriplegia.

However, undergoing, publicizing and advocating for such therapies can create ethical problems. Members of the public with the same diseases, feeling desperate and assuming that celebrities necessarily get the best care, may assume that they should also enroll in experiments. As one woman with Parkinson’s said of Michael J. Fox, ““I just tried to follow right behind him and step in the footprints.” In addition, because society lionizes its celebrities, their illnesses are almost always remembered in a positive light. Thus, readers of The New York Times were told, incorrectly in retrospect, that Gehrig’s and Abram’s experimental therapies had been highly effective. In Reeve’s case, the potential value of stem cell research remains highly remains controversial.

Another ethical issue raised by celebrities concerns the allocation of research funding. These days, it seems that having a big name celebrity spokesperson is the best way to ensure funding support for a given disease. Such individuals are able to attract the attention of both the media and members of Congress. For example, Yasmin Aga Khan, the daughter of actress Rita Hayworth, who died of Alzheimer’s, has made several successful fundraising appearances for the disease on Capitol Hill. Fox has done the same for Parkinson’s and Lance Armstrong has been a tireless advocate for new cancer breakthroughs. While it is logical to think that scarce research dollars should instead be allocated based on need and chance of success, the current situation is unlikely to change.

And famous patients may not be purely altruistic in their advocacy efforts. In 2002 a scandal emerged when it was learned that a series of celebrities—including Kathleen Turner, Olympia Dukakis and Rob Lowe—had booked themselves onto talk shows to tout the supposed virtues of various pharmaceutical products. The fact that they were being paid to do so was unsaid until the media outed this practice.

In sum, celebrities can perform a great service in publicizing diseases and informing others about possible advances. But by dint of their great popularity, celebrity patients can also wield too much power, potentially misleading sick people at a most vulnerable time.

You Failed to Screen for Cancer? You Got Cancer? There's a Penalty for That

An article in the British Medical Journal for October 28, 2006 relates that the German government as part of a package of health reform legislation, yet to be passed, has a law that would penalize cancer patients who did not undergo screening for the cancer before the cancer was diagnosed. Patients with chronic illness currently pay up to a 1% maximum of their gross income for their health care, whereas the cancer patients who did not screen would have to pay up to a 2% maximum.. The screening tests advised for adult Germans include fecal occult blood testing and colonoscopy for colon cancer, cervical smear tests for cervical cancer and breast exams and mammography for breast cancer detection in women and rectal exams for prostate cancer. My reading of the age to begin testing and the frequency of the testing appears similar to criteria in the United States. But the ethical issue is whether patients who are suffering the emotional and physical pains of cancer should have another burden, a penalty of not having been screened for their disease. The ethical principles involved here, in my opinion, would be that of justice vs beneficence. Presumably, the rationale for this law is to have the patients be responsible, and not society, for the presumed added costs for treatments which is felt they brought on themselves because of their failure to be screened. The other rationale would be, through this penalty, to encourage people to participate in cancer screening for their own personal benefit. Both of these rationales would have to be based on the assumption that all cancer screenings would be sensitive and specific enough to detect the cancer in every patient who was later to become symptomatic of the cancer. How about penalizing patients with other diseases which are related to personal poor health habits: alcohol, tobacco, illicit drugs, overeating and ??? riding motorcycles. What is your take on this issue? ..Maurice.

"Why Can’t A Woman Be [ treated ] More Like A Man?"

"Why Can't a Woman Be More Like A Man?"The question posed by the “My Fair Lady” lyrics might be revised by some to “why can’t a woman be treated more like a man?” The consequences of the issue of gender inequality is analogized as like cancer detection in an article “Early Detection of Differential Treatment” by Alison Jost in the November 3, 2006 issue of Bioethics Forum. The article describes the author’s experience with her new dermatologist (a male dermatologist) and her suspicions that she received differential treatment (in a negative sense) with respect to what a man might have received. Although she reminds us of other areas of differential treatment of women's health and life,she is worried that this unequal treatment by physicians may be, at times, to the detriment of the woman’s health. The author seems to be concerned that some women would not early recognize the inequality and therefore not act on it, thus leading, like the need for early cancer detection, to their medical harm.

There are some questions that arise from this article. One is: is the concern about differential treatment realistic? There has been published commentary about the missed diagnosis and therefore missed treatment of women who have significant coronary artery disease. This might support the concern. Another question is whether women physicians also provide differential treatment to women patients and, if so, what is the difference regarding their behavior or their attention to the needs of woman vs men? If the differential treatment is real,what is the motivation of the physician? Any help on these questions? ..Maurice.

The Dying Patient: Some Questions

It would be unusual for the patient's personal physician to be attending and witnessing the imminent death of his or her patient. Usually, that physician is somewhere else at the time and it usually is the family, attending nurses, pastor, hospitalists or paramedics who actually are present and attending to the patient. However, often, it is in the day or days before death that the personal physician has the opportunity to be present and therefore be able to professionally interact with the dying patient. But what should be that interaction?

The issue of the dying patient is an important topic that is discussed with medical students as they begin their medical education and their careers. At the medical school in which I participate, we talk about the dying patient in the first semester of the first year. The students are given the opportunity to sit with and talk to an actor (standardized patient) playing the role of a dying patient and then later are given feedback regarding their behavior by both the “patient” and the physician facilitator. Further, I give my students a series of questions to answer and which becomes the basis for a small group discussion regarding the role and responsibilities of the physician dealing with the dying patient. The students may each have different answers to some of the questions, perhaps based on their own personal experiences and these differences are discussed.

The public’s view of the role of the physician attending the dying patient may be different than any consensus arrived at by a group of students learning to become doctors. I would like to present these questions to my blog visitors and then read and learn how they would answer them. As I have noted in previous posts, a physician's role in medicine is often set by society and my visitors represent that society. ..Maurice.

1. What do you think is the physician’s role in dealing with the dying patient?
2. Do you think there is a time when the physician should back away and let the nurses, family and pastor deal with the patient?
3. What do you think a physician feels when he/she stands at the bedside of his/her dying patient? Is there any “right: or appropriate feeling?
4. Should a physician tell his/her patient that he/she is dying? Why or why not?
5. What should the physician be talking about to his/her dying patient?
6. What is the role of a bedside physician when his/her patient has just died?

Spirituality and Medical Practice

If it is true as reviewed in the article “Spirituality and Medical Preactice” published in the journal ”American Family Physician” January 1 2001 that “95 percent of the Americans believe in God” and that “94 percent of the patients admitted to hospitals believe that spiritual health is as important as physical health” and that “77 percent believe that physicians should consider their spiritual needs as part of their medical care” and that “37 percent want their physician to discuss their religious beliefs more” then there is a mismatch between patient desires and physician behavior when “80 percent of patients reported that physicians never or rarely discuss spiritual or religious issues with them.”

“Spirituality is a complex and multidimensional part of the human experience. It has cognitive, experiential and behavioral aspects. … Many people find spirituality through religion or through a personal relationship with the divine. However, others may find it through a connection with nature, though music and the arts, through a set of values and principles or through a quest for the scientific truth.” Whichever way they find it, it can brighten one’s life and provide an extra support during trying times. It also has been suggested that there might even be therapeutic value toward emotional or physical illness.

What is important, I think, is that the way patients may look at their physical illnesses is not necessarily the way physicians are taught to describe the pathophysiology and the clinical implication of the patient’s illness on the patient. Patients may have an entirely different way of looking at their sickness, why they are sick and what the effect the sickness will have on their life. This is especially true when patients are faced with a life ending illness. I think that when patients are considering factors that are “beyond their body” dealing with emotions, beliefs or religion, it is important that physician recognize these considerations as they evaluate the patient. This is done by communicating with the patient and gaining an understanding regarding to what extent spirituality is playing in their life and how it is being used. Medical school education programs are now stressing that the knowledge of patient’s spirituality and religious thoughts and feelings are as worthy considerations as the patient’s physical exam and laboratory findings. Perhaps in the future more physicians will do what many patients seem to desire, consider spirituality as part of medical care.

Do you have any thoughts about this? Has your physician ever asked you about your spirituality or religious beliefs? Do you think they should? ..Maurice.

Growing Old

Apple Boxes
By Maurice Bernstein, M.D.

A stack of old wooden apple boxes
Each waiting to hold another peck
Mackintosh, Braeburn and maybe even Spitzenburg
Hoping their wooden ribs
Hold, not break and spill the contents
And be considered useful for another season.

A group of old men and women
Each waiting to hold the child
Their own great grandchild or maybe even a neighbor’s child
Hoping their arthritic hands
Grip, not let go and drop their precious contents
And be considered useful for another season.

[Photographed by me yesterday at an apple farm in San Luis Obispo County, California.]