Ethics

Physician Assisted Suicide: A Spiritual Challenge

April 30, 2010

Commentary on  last week’s “Physician Assisted Suicide—Is now the time?” by Antonella Surbone, MD PhD FACP, Ethics Editor, Clinical Correlations.

Last week’s piece on Physician Assisted Suicide (PAS) by Dr. Juliana Eng addresses in simple and clear terms an issue that, at times, occupies the front pages of our newspapers or becomes the center of heated public debate or the theme of elaborated ethical argumentations. For long periods, however, the request of some of our patients to be helped in putting an end to their suffering, be it physical or existential or both, goes on silently in the professional lives of many of us.

As Ethics Editor of Clinical Correlation, I would very much like to see Dr. Eng’s piece stir a debate in our community as members of New York University regarding PAS and its many medical, moral, psychological and social implications. In my opinion, to be useful, this debate should not be adversarial or focused on dogmatic reasoning. Rather, it should be a forum where each one of us feels at ease to express his or her views as a practicing physician who may have encountered patients requesting PAS, but also as a person who may have been personally touched by the extreme suffering of a relative or friend.

I was first asked by a patient to help her dying during my internship in 1983. She was a 60 year old immigrant lady, who had worked as a janitor for her entire life. She was always alone, having no family left anywhere in the world or friends who could be near her. She had metastatic lung cancer and was in extreme physical and existential suffering. Even after analgesia was increased to an optimal level, her existential suffering persisted. She died, in no more physical pain, two weeks later. It was not up to me to respond to her request (I was only an intern and EAS was not legally allowed), yet this patient had given me the privilege to share in her desire to put an end to her longstanding pain. I owed it to her and to myself to make a decision about where I stood. Though our patients’ suffering may be unbearable for them and also for us, when we are unable to alleviate it, I have become convinced that “reverence for life” is at the core of being a physician. (1) In 1992, Dr. Edmund Pellegrino argued cogently that doctors must not kill, and I refer interested readers to his original article for an insightful review of the ethical and social arguments against EAS. (2) Some colleagues may agree with this view, while others may rather see helping a patient die as an act of piety, when the suffering truly cannot be alleviated and when there has been a special longstanding connection between the patient and her doctor. (3) Yet, most importantly, we all need to understand the sources of suffering of our patients and to find effective ways to address their unmet needs .

A survey of 988 terminally ill patients and 893 primary care-givers in the US from 5 outpatients setting (4 urban, 1 rural) between March 1996 and July 1997, reported that when presented with hypothetical scenarios, 60.2% of 988 patients supported EAS and 10.6% seriously considered EAS. At two to six month follow-up interviews, however, 50% had changed their mind. According to their caregivers, of 256 decedents among the initial patient group, 14% had asked about EAS, 2.5% had hoarded drugs, yet only one (0.4%) actually died of EAS. From this study, it appeared that factors associated with being less likely to consider EAS were feeling appreciated, being aged 65 or older and being African-American. By contrast, factors associated with being more likely to consider EAS were the presence of depressive symptoms, unmet care giving needs and pain. (4)

From these and other data, it appears likely that untreated depression is strongly associated with requests for EAS, but other pressures, related to prior social stigmatization or other factors, may contribute to increase patients’ desire to die. (5,6) Psychosocial distress, lack of social support, spiritual distress, and poor quality of life are main factors in patients’ requests for hastened death. Existential suffering, characterized by fear of being a burden to others, loss of control over the circumstances of death, perceived loss of dignity and lack of meaning to life, seems to heavily contribute to patients’ “weariness of life.” (7,8) Race, culture, gender and age have been shown to affect attitudes toward end-of-life matters and EAS of both patients and physicians. (9) A 2002 study showed that individuals’ psychosocial traits and beliefs can be more predictive of cancer patients’ attitudes toward PAS than disease severity or symptomatic distress – an issue that deserves further investigation. (10)

Further research is needed to explore the interaction of physical health, functional status, social isolation, depressive symptoms and uncontrolled pain in terminally ill patients, in order to enable all physicians to recognize and address the unmet needs of those patients asking their doctor’s help to end their lives, before considering such requests. Communicating with patients and their families, understanding their existential issues at the end of life, and preserving and promoting the dignity of terminally ill patients are essential for responding to their requests for EAS. (7,8) Finally, as Dr. Eng correctly stresses, emotional support should be provided for those physicians who find themselves involved in their patients’ requests for PAS, regardless of their final choice to provide or deny assistance to their patients who wish to die.

“Whether or not one has been a believer, there is a spiritual challenge in dying.” (11) The challenge is equal, if not greater, in regard to helping another fellow human being end his or her life. PAS is not merely a matter of laws and regulations: it is first a spiritual challenge for the patient and the physician.

References

1. Schweitzer A. Reverence for life. New York: Harper and Row, 1966.

2. Pellegrino ED. Doctors must not kill. J Clin Ethics 1992; 3:95 -102

3. Quill TE . Doctor, I want to die. Will you help me? JAMA 1993; 270: 870-873.

4. Emanuel EJ, Fairclough DL, Emanuel LL. Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA 2000; 284:2460-8

5. Breitbart W, Rosenfeld BD, Passik SD. Interest in physician-assisted suicide among ambulatory HIV-infected patients. Am J Psychiatry. 1996;153:238-242.

6. Emanuel EJ. Depression, euthanasia, and improving end-of-life care. J Clin Oncol 2005; 23:6456-8.

7. Gallagher R. Can’t we get this over with? An approach to assessing the patient who requests hastened death. Can Fam Physician 2009: 55: 260-261.

8. Chochinov HM. Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care. BMJ 2007;335:184–17.

9. Mebane EW, Oman RF, Kroonen LT, Goldstein MK.The influence of physician race, age, and gender on physician attitudes toward advance care directives and preferences for end-of-life decision-making. J Am Geriatr Soc. 1999 ; 47:579-91.

10. Suarez-Almazor ME, Newman C, Hanson J, Bruera E. Attitudes of terminally ill cancer patients about euthanasia and assisted suicide: predominance of psychosocial determinants and beliefs over symptom distress and subsequent survival. J Clin Oncol 2002;20:2134–41.

11. Pellegrino ED. Ethical issues in palliative care. In “Handbook of psychiatry in palliative care.” Oxford University Press 2000

Physician-assisted Suicide – Is Now the Time?

April 24, 2010

Juliana Eng MD

Several months ago, the U.K. courts ordered Ken Starmer, Director of Public Prosecutions, to delineate the conditions under which his office would be likely or unlikely to prosecute people who helped friends or relatives kill themselves.  This list of conditions is intended to provide information so that those who wish to assist another commit suicide can make an informed decision.  Yet Section 2(1) of the Suicide Act of 1961 provides: “A person who aids, abets, counsels or procures the suicide of another, or an attempt by another to commit suicide, shall be liable on conviction on indictment to imprisonment for a term not exceeding fourteen years.”1   Mr. Starmer clearly stated that the taking of another person’s life remains a murder.  However, his goal in publishing this new guideline is to make it easier to escape liability for assisted suicide.  So why complicate matters with these new guidelines instead of just making assisted-suicide legal now? 

Many studies indicate that a small, but definite proportion of U.S. physicians have performed physician-assisted suicide (PAS), even though it is illegal.2  The only national survey conducted found that, among a representative sample of 1,902 U.S. physicians with a high likelihood of caring for dying patients, 18.3 percent reported having received a request from a patient for medication to use with the primary intention of ending the patient’s life.  Of those physicians, 16 percent (or 42 physicians) had actually written the prescription and 59 percent of those patients (or 25 patients) used the prescriptions to end their lives.3  At first glance, I believed that those patients were lucky to find a physician who was willing to help them determine the time, place, and method of their death.  As a resident, I have witnessed how we torture patients with lines, tubes, and isolation at the end of life.  I even found myself hoping that I would ultimately undergo a peaceful, painless death in my sleep. 

But were those patients really that lucky?  Those patients could have been suffering from untreated depression, poorly controlled symptoms, or lack of social support.  Oregon was the first state to legalize PAS by passing the Death with Dignity Act in 1997.  A subsequent study in 2000 in Oregon examined the characteristics and circumstances of patients who requested and ultimately decided to use PAS to end their lives.  The study found that 46% of patients who received one or more palliative interventions changed their minds about assisted suicide, as compared to 15% of patients who received no intervention.  Interventions included pain/symptom control, referral to hospice, treatment of depression, general reassurance, social work consult, palliative care consult, or an alternative means of hastening death.4  According to this study, an extra 30 percent of the patients continued living because of interventions that physicians assume are already in place before a physician assists a patient with suicide.  In fact, the Death with Dignity Act tried to protect such patients by including a provision that required a referral to a psychiatrist or psychologist for counseling if a psychiatric disorder was suspected in a patient requesting PAS.  However, from 1998 to 2006, only 12.6% of patients who received prescriptions for lethal medications were referred for psychiatric evaluations.  In 2007, none of the 85 patients who received prescriptions received such referrals.5  Even with legal safeguards, notwithstanding the difficulty of enforcing such laws, one wonders how many physicians are not abiding by those standards and thus erroneously or prematurely facilitating patient suicide.

PAS is also complicated by its effects on physicians.  A study found that, although a majority of oncologists who have participated in PAS illegally had a positive experience, 25 percent regretted performing euthanasia or PAS, and 15 percent suffered emotional distress unrelated to fear of prosecution.1  The specific etiology of that regret is not reported, but it is probable that it stems from physicians’ hindsight that they had mistakenly assisted a patient suicide without properly exhausting all other palliative interventions.  Another likely explanation is that physicians realized that they were misguided by their own self-imposed values.  These perceptions are haunting and could never be validated or invalidated.  Although twenty-five percent is a minority, these reports suggest that physicians need adequate training and emotional support in dealing with PAS to minimize possible errors or even perceptions of them.  Feelings of regret, failure, guilt, trauma, and incompetence are all familiar emotions to us, as physicians, but they usually result from a horrible disease or an unintentional medical error.  I’m not sure we’re ready to handle the emotions concomitant with committing an intentional one. 

The medical community is not ready for PAS to be legalized right now.  Physicians have only minimal training in how to technically and emotionally handle PAS situations.  Furthermore, even after 10 years of legalizing PAS in Oregon with specific provisions meant to protect patients, these safeguards alone are inadequate, and some patients may have still been victims of assisted suicide.  However, keeping PAS illegal is an impediment to providing adequate safeguards, research-based guidelines, and emotional support for both the patients and physicians that will continue to partake in PAS despite its illegality.  It is merely ignoring the needs of our patients and placing both patients and physicians at risk for quietly mishandling PAS situations.  Perhaps the U.K. is on to something—keep PAS illegal to minimize harm until there is adequate training/support for physicians and effective methods of enforcing the guidelines necessary to protect patients.  The legalization of PAS is forthcoming, the prior step is to work with the public and establish proper training and guidelines to ensure that PAS will have a safe place in our society.  With the new guidelines that Mr. Starmer just publicly announced, it seems that the UK is on the right track. 

 Dr. Eng is a 2nd year resident in internal medicine at NYU Medical Center.

References

1        http://www.cps.gov.uk/consultations/as_index.html

2        Emanuel E.  Euthanasia and physician-assisted suicide, a review of the empirical data from the United States.  Arch Intern Med.  2002;162:142-152.

3        Meier D.E., Emmons C., Wallenstein S., Quill T. et al.  A national survey of physician-assisted suicide and euthanasia in the United States.  N Engl J Med.  1998;338:1193-201.

4        Ganzini L., Nelson H.D., Schmidt T.A., Kraemer D.F., Delorit M.A., Lee M.A.  Physician’s experiences with the Oregon Death with Dignity Act.  N Engl J Med.  2000;342:557-563.

5        Steinbrook R.  Physician-assisted death – from Oregon to Washington stateN Engl J Med.  2008;359(24):2513-2515.

The Ethics of Electronic Health Records

January 15, 2010

emrJohn J. Mercuri

Faculty peer reviewed

Introduction
The 111th Congress allocated $19 billion of the American Recovery and Reinvestment Act of 2009 toward the creation of an electronic health record (EHR) for each person in the United States by 2014.(1) The recent debate over EHRs has focused largely on the economic, logistical, and political consequences of implementing such a system; however, the country should also contemplate the ethical ramifications of EHRs. Addressing these concerns requires the application of ethical principles such as autonomy, justice, beneficence/non-maleficence, and privacy and confidentiality.

Autonomy
Positively, autonomy means allowing “individuals to make their own choices and develop their own lives in the context of a particular society and in dialogue with that society;” negatively, “autonomy means that one human person, precisely as a human person, does not have authority and should not have power over another human person.”(2)(p29) Any type of EHR system must maintain respect for patient autonomy, and decisions must be made about the access, content, and ownership of the records.

People are shifting many daily activities to the Internet, and the growth of social networking websites has given people the ability to control and define their online presence.(3) Mandl, Szolovits, and Kohane note that autonomous patients will expect to access their EHRs with relative ease, and many patients might desire a level of control over their records’ content. Such a high level of patient autonomy conflicts directly with the medical and legal utility of a health record. For this reason, patients should be restricted from modifying or deleting any of the content entered by health care professionals; however, it should be acceptable for autonomous patients to view, annotate, or challenge the record with relative ease.4 This type of access might actually result in a higher quality document because patients will act as proofreaders of their own health histories.

The ownership of EHRs must also respect patient autonomy. Autonomous patients will argue that they are the rightful owners of the intimate information contained in their EHR. As with other types of electronic media, however, the companies that create EHR software or maintain the data storage servers might claim ownership of the data.(4) Similarly, individual health care providers and hospitals might argue for ownership of the information. These obvious conflicts between economic and personal value, professional and patient autonomy, and business interests must be rectified both ethically and legally before EHRs are implemented widely across the health care system.(5)

Justice
Justice is commonly defined as “fairness.”(6) With respect to health care, justice refers to society’s “duty to provide its members with access to an adequate level of health care that fulfills basic needs.”(2)(p245) EHR systems are most beneficial when they are user-friendly, fully integrated, easily searchable, and built with well-designed hardware and software.(7,8) Such EHRs have the potential to help the health care system provide higher quality care to a larger number of people, thus making the system more equitable through improved efficiency and effectiveness. On the other hand, EHRs also have the potential to create new injustices. A so-called digital divide already exists between different socioeconomic groups, with greater computer and Internet access and usage among people of higher socioeconomic status.(9) EHRs might exacerbate this preexisting technology gap, thereby hindering patients of lower socioeconomic status from gaining the full benefits of an accessible EHR system.

Beneficence/Non-maleficence
These two principles are literally defined as “do good” and “avoid evil,” respectively. Applied broadly, however, these definitions are so vague that they are practically useless.(2)(p57) Thus, this essay will discuss beneficence in relation to using the data stored in the EHR system and non-maleficence in relation to protecting the data.

A large, interconnected system of EHRs will contain a massive amount of raw data, and great potential will exist to conduct groundbreaking biomedical and public health research. Such research will do good not only to the health of individual patients, but also to the health of society as a whole. Therefore, as new EHR systems are designed, patients should be given the ability to release information from their EHRs to scientists and researchers.(4,10,11) Likewise, approved researchers should be given permission to easily access and analyze data that is made public. Developing a large, research-compatible system of EHRs will be costly and legally challenging; however, the long-term benefits will be more valuable than the initial costs.(12)

The integrated data storage of an EHR system also creates several potential harms, as described by Mandl, Szolovits, and Kohane. First, temporary outages of the EHR system will, at a minimum, hinder the work of health care professionals or, worse, cause significant patient morbidity or mortality. However, total system failures and the loss of patient data present an even greater danger than temporary outages. Since the loss of health data is unacceptable in any circumstance, all data must have multiple back-ups that can be quickly and easily recovered. Second, a foolproof security system for electronic data has never been developed. Medical records contain some of the most sensitive information about an individual. If EHR systems cannot maintain the highest level of data security, patients could suffer a variety of harms.(4)

Privacy and Confidentiality
“Confidentiality is concerned with keeping secrets… A professional secret is knowledge that, if revealed, will harm not only the professional’s client, but will do serious harm to the profession and to the society that depends on that profession for important services.”(2)(p117-119)

The confidentiality of a patient’s medical information is sacred in the health care profession. Mandl, Szolovits, and Kohane note that health records contain intimate information that, if revealed, could result in anything from minor embarrassment to the loss of insurance or employment. The maintenance of strict confidentiality creates an environment that facilitates the privileged and unrestricted sharing of sensitive information between a physician and a patient. Any breach of privacy will irreparably damage this unique doctor-patient relationship. In the absence of confidentiality, patients might not fully disclose important facts; even worse, patients might avoid medical care entirely. (4)

Unfortunately, as mentioned earlier, privacy might conflict with the beneficence of an integrated EHR system. EHRs will certainly be most secure if patient data were the patient’s private property; however, good public policy can both protect privacy and provide a level of openness that will benefit the public health most fully.(9,13,14) For example, in order to protect simultaneously both patient privacy and autonomy, Mandl, Szolovits, and Kohane propose not only enabling patients to make decisions about how much of their EHRs they wish to make public to scientists and researchers, but also enabling them to give certain health care providers different levels of access to their EHRs. Although allowing patients to set the access level of various health care providers will certainly respect their confidentiality, it might inadvertently harm their medical care by preventing providers from accessing the information they need.(4) Ultimately, patients will have to balance this risk with their desire for privacy.

Conclusion
This essay has briefly surveyed how the ethical principles of autonomy, justice, beneficence/non-maleficence, and privacy and confidentiality apply to a large, integrated system of EHRs. Clearly, the ethical consequences of such a system should be part of the current public debate over health care reform.

John Mercuri is a 3rd year medical student at NYU Medical School.

Faculty peer reviewed and commentary below by Andrew Wallach MD, NYU Division of General Internal Medicine.

John Mercuri effectively argues the importance of applying ethical standards to the current debate on EHRs. Patient ownership of their data, in terms of both content and privacy, is key. As electronic patient records (albeit stripped of their protected health information) are sought by pharmaceutical and insurance companies, policy-makers, and researchers, there is great potential for both financial and personal harm to individuals if the data are not fully protected. Further, inherent conflicts of interest arise when the same companies that maintain electronic patient data also sell the much sought-after information from their data warehouses, a practice that happens today. Clearly, there are numerous benefits to EHRs; however, we are reminded by Mr. Mercuri of the importance of including these ethical considerations in the current debate.

References

1. American Recovery and Reinvestment Act of 2009. HR 1, 111th Congress, 1st Session, Title XIII. <www.rules.house.gov/111/LegText/111_hr1_text.pdf>. Enacted 2009. Accessed September 13, 2009.
2. Garrett TM, Baillie HW, Garrett RM. Health Care Ethics: Principles and Problems. 4th ed. New Jersey: Prentice Hall; 2001.
3. Google Trends. <www.google.com/trends>. Accessed September 13, 2009.
4. Mandl KD, Szolovits P, Kohane IS. Public standards and patients’ control: how to keep electronic medical records accessible but private. BMJ. 2001;322(7281):283-287.
5. Hall MA, Schulman KA. Ownership of medical information. JAMA. 2009;301(12):1282-1284.
6. Oxford English Dictionary. 2nd ed. s.v. “Justice.” <http://dictionary.oed.com/cgi/entry/50124865?query_type=word&queryword=justice&first=1&max_to_show=10&sort_type=alpha&result_place=1&search_id=7n0T-MBTDrE-12380&hilite=50124865>. Published 1989. Accessed September 13, 2009.
7. D’Avolio LW. Electronic medical records at a crossroads: impetus for change or missed opportunity? JAMA. 2009;302(10):1109-1111.
8. Sittig DF, Singh H. Eight rights of safe electronic health record use. JAMA. 2009;302(10):1111-1113.
9. Kontos EZ, Bennett GG, Viswanath K. Barriers and facilitators to home computer and internet use among urban novice computer users of low socioeconomic position. J Med Internet Res. 2007;9(4). <http://www.jmir.org/2007/4/e31/v9i4e31>. Accessed September 13, 2009.
10. Meier B. Panel Suggests Medical Priorities for U.S. New York Times. Published 30 June 2009. <http://www.nytimes.com/2009/07/01/health/policy/01compare.html?_r=1&hp>. Accessed September 13, 2009.
11. Lee LM, Gostin LO. Ethical collection, storage, and use of public health data: a proposal for a national privacy protection. JAMA. 2009;302(1):83-84.
12. Duncan JR, Evens RG. Using information to optimize medical outcomes. JAMA. 2009;301(22):2383-2385.
13. Rodwin MA. The case for public ownership of patient data. JAMA. 2009;301(22):86-88.
14. Gostin LO, Nass S. Reforming the HIPAA Privacy Rule: safeguarding privacy and promoting research. JAMA. 2009;301(13):1373-1375.

Ethics Commentary: Communication and Breaking Bad News

July 2, 2009

Commentary on Dr. Cox’s Tales of Survival by Antonella Surbone MD PhD FACP, Ethics Editor

Commenting on Dr. Cox’s honest heartfelt piece is not an easy task and even less so for me, as Ethics Editor. Why? Because before being a trained, published bioethicist, I’m a physician too. I’ve been through medical training and Fellowship in oncology in Italy and in the US: everywhere I have experienced the same doubts and felt the same anguish that Dr. Cox powerfully describes. During my internship, I still remember calculating over and over the dose of electrolytes needed by patients in renal failure for fear of making a mistake, drawing my first ABGs without ever having done it before or being taught how to do it, trying to halt with my hands a major epistaxis in an old man with metastatic prostate cancer and DIC while waiting for the blood bank to send up what I had requested. I felt almost overwhelmed by fear, yet even more powerful was the desire to ease the suffering of other fellow human beings. I shall never forget when, during my first night on-call at the NCI in Milano, three patients died. I was young; they were all younger than me. And I was the one who had to tell their families. In Italy we do not always request autopsies, but in one case it was important to understand whether an experimental drug had contributed to the patient’s death. His family understood the need for the autopsy, yet, as in the case of Dr. Cox, they refused it. It was simply “too much.”

I too asked myself if it would ever get easier, if I would ever stop feeling as though I was intruding on one of the most sacred moments in family life, when someone loved and treasured closes her eyes forever. In my over 25 years of oncology practice, it never got easier, nor did I get more used to my patients’ death or felt less intensity when telling their loved ones. Something did change, though: with increasing clinical experience, I have been able to establish deeper connections with my patients and their families, never, I hope, overstepping the boundaries of the patient-doctor relationship or losing sight of my objective clinical judgement. On the contrary, by learning how to be closer to my patients and their families, I also became a better physician. I acquired diagnostic and therapeutic skills that only empathy makes possible, since to be a good doctor one needs to listen to patients and to establish with them a strong reciprocal trust.

Empathy is part of the healing power of the therapeutic relationship between patients and doctors. (1) Empathy, however, can only be expressed fully when physicians have acquired a higher enough level of clinical expertise that allows them to get closer to their patients without being afraid that intimacy could cloud their clinical judgement. At a certain point, defined by our degree of maturity as physicians and as persons, we no longer require distance in order to function effectively. From that point on, then, it becomes “easier” to be close to our patients and also to tell relatives that their son, husband or mom died, and even to ask for an autopsy.

In a piece featured in the New York Times of March 12th 2009, Dr Pauline Chen discusses the feeling of abandonment that many patients and families experience at the end of life. (2) She cites the results of a study from Seattle that examined feelings of abandonment at the end of life that examined this experience from the perspective of patients, caregivers, nurses and physicians, recently published in Archives of Internal Medicine. (3) The study found disparities in perception between doctors and patients. Doctors were aware that dying patients might feel abandoned might feel abandoned, yet this awareness did not, apparently, translate into more effective and empathic approaches to their patients, as both patients and caregivers still felt abandoned by doctors at these times. The authors suggest that physicians should be more aware of the importance of non-abandonment and of patients’ and caregivers’ need for closure. They should be more open in acknowledging the approaching of death with the patient, and calling the family or sending a condolence note after death. Yet, as the leading author stated, physicians are often unaware of the “tremendous therapeutic value of their presence, even on the phone” or “are worried about how they will manage their emotions, so they keep things at arm’s length.” (2) Moreover, physicians still lack proper teaching and training in communication skills. Part of improving these skills involves learning about one’s own emotional responses to patients, about how comfortable or uncomfortable one is with the feeling of personal failure when losing a patient, and about how open one is to seeing that it is possible to help patients even when you can no longer cure or save them.

This brings me to my final comment. I found it very troublesome that Dr. Cox writes that “despite all the med school small group sessions about ‘breaking bad news’ I had no idea what to say.” Clearly, the communication teaching was not effective or , at least, not sufficiently so. A recent article in the Journal of Clinical Oncology pointed to the importance of training the trainees. (4) Only if this is done successfully can we expect that medical students, and medical doctors who attend communication skill workshops or courses, will be actually will learn how to communicate with their patients, especially when breaking bad news and at the end of life.

Ancient Greek philosophers tended to believe that “virtue cannot be taught”, yet they dedicated their lives to find the most effective methods to teach virtue. Being good communicators is, in part, an innate quality that not all of us have: still, communication skills can and should be taught. We, as senior physicians and as teaching institutions, have the responsibility to do so, by acting as role models and by providing effective education and training in communication in the clinical setting.

1. Spiro HM. What is Empathy and Can it be Taught? in Empathy and the Practice of Medicine. New Haven and London: Yale University Press,1993.
2. Chen P. When patients feel abandoned by doctors. The New York Times, March 12th 2009.
3. Back Al, Young JP, McCown E et al. Abandonment at the end of life from patients, caregivers, nurses and physicians perspective. Loss of continuity and lack of closure. Arch Intern Med 2009; 169:474-479.
4. Back AL, Arnold RM, Baile WF et al. Faculty development to change the paradigm of communication skills teaching in oncology. J Clin Oncol 2009; 27: 1137-1141.

Commentary on Conscientious Objection in Medicine: A Moral Dilemma

June 5, 2009

aristotle_by_raphael

The following is a commentary  on last week’s post, Conscientious Objection in Medicine: A Moral Dilemma, written by Dr. Bradley.

 Commentary by Antonella Surbone, MD PhD FACP, Ethics Editor

The piece by Dr. Bradley raises a highly controversial issue in today’s medicine, physicians’ conscientious objection. Dr. Bradley reviews recent legislature, as well as medical literature, including the underlying ethical argumentation. Unfortunately, the key issue of ethical and moral justification for conscientious objection in medicine is unlikely to be resolved through abstract debate and argumentation, no matter how cogent. In fact, when we talk of “patients’ wishes within reason” or of “appropriate treatment” , we inevitably stumble upon the real core issue at stake: by whom and how is it decided what a reasonable or an appropriate wish is. Morally speaking, who can claim to have the “true final saying” in the cases presented as examples? The woman who decides for an abortion because she was raped (or because she’s already a single mother of two who can’t afford to provide for a third child) or the religious physician whose religious faith tells him that abortion is killing a human life and cannot be performed under any circumstances? In the case of assisted suicide, isn’t it the same? Once we have established the patient’s competence and excluded the presence of untreated depression or pain, or of any external influence on his or her decision, can we then move on to say that the patient’s wishes to die are within reason? They may be legally valid, but their moral justification can still be questioned by a physician who opposes any form of killing, rather than healing, as part of his or her professional duties. (1)

 Medically appropriate, legal, ethical and moral are not only different terms, but they do apply to different spheres of our life and reasoning. Yet, they are inextricably bound together in the daily reality of clinical medicine, and physicians have the obligation to reflect very seriously about their professional commitments, as well as the boundaries that they may or may not be allowed to impose once they have chosen medicine as a profession. (2) The Preamble to the AMA Declaration of Professional Responsibility states, on behalf of all physicians, that “humanity is our patient” and that we have the duty to treat the sick and injured with competence and compassion, and without prejudices, e racial, ethnic, and other forms of biases. (3) This involves respecting patient’s values and autonomy. In my medical oncology practices, have I seen, sometimes in the same day of clinics, young women diagnosed with breast cancer opting for an abortion and others determined to continue a risky pregnancy: I spoke at length with all of them, provided all available information and even expressed my own opinion, when I was directly asked for it. In the end, I respected their decisions, which they all had reached through a difficult process of pondering all pro and cons, in consideration of their individual circumstances and values.

In the end, today’s ethical debate centers around two opposed views: one assumes patient autonomy as central to today’s medical care, where patients and physicians are bound through a relationship of equal partnership and patients are often called “clients or consumers” of “physicians providing services”. The other considers the patient-doctor relationship as an asymmetric relation of help, based on the need that the patient has for the help of the physician, with knowledge and experience in a given field of medicine.

According to the first view, once a medical treatment is medically and legally approved, there is no place for conscientious opposition. By contrast, where more importance is given to the relational aspects of the patient-doctor relationship, there is more space for patients and doctors to debate the morality of patients’ choices or requests. As a consequence, the physician may express his or her different own moral or religious convictions and assume a position of conscientious objection, if another physician is available and willing to promptly assume the patient’s care and abide by the patient’s desires or requests.

This kind of referral must be done personally by the physician claiming a right to conscientious objection to a colleague, and always after having always provided the patient with full unbiased information. As Dr. Bradley reports, referral policies carry the potential risk to invalidate the informed consent process: an ethical mistake that no physician can commit any longer.

I wish to end my brief commentary by referring all interested readers to the extensive written and online debate that has followed the article by Dr. Savulescu in BMJ. (4) The many commentaries of some among the best known and most respected bioethicists will intensely stimulate reactions and thoughts: I highly recommend it to all physicians at any stage in their career, since we all have encountered situations where our beliefs of what was appropriate or reasonable for our patients’ were discordant with what they considered such, and younger doctors will find face similar situations too. Indeed, it is not solely the refusal of abortion or PAS that may raise moral issues of conscientious objection. On the contrary, pondering how we wish to reach a common meaning of “reasonable wish ” or “appropriate treatment” together with our patients, applies to many of our clinical decisions.

At the risk of falling into the easy solution of using casuistry instead of ethical argumentation and justification, however, I will conclude with my personal experience of a successful ethical patient’s referral. The patient was me, I had been hospitalized as an emergency at the end of my second month of pregnancy for a serious complication that could have threatened both my life and the developing one of my future child. I spent eight consecutive months at two major teaching hospitals in NYC, initially cared for by my OB-GYN, who came to make a diagnosis, but then concluded that the pregnancy was at too high risk for both me and the fetus. She spent a long time explaining all details to me, and I understood them fully. Yet, I had always dreamed of a child and I was 41 year old : I decided that I would not have an abortion, not even an amniocentesis, and I would accept God’s or nature’s decision. After a month, my OB-GYN came into my room one evening, accompanied by a trusted colleague of hers, and told me that she could no longer care for me, but he had accepted to do it. I was transferred to a different institution, cared for wonderfully by my new OB-GYN and visited occasionally by my prior one. All went well in the end, though it wasn’t an easy time of my life. Upon discharge from follow-up post-partum care, I resumed seeing my old OB-GYN for regular check-ups. I always considered what she had done, and how she had done it, highly moral.

Medicine involves abstract ethical and legal debate, but medicine is first a profession we undertake to help suffering human beings, with whom we connect. Being capable of doing so is the essence of being a doctor.

1. Pellegrino ED. Doctors must not kill. J Clin Ethics 1992; 3:95-102.

2. American Medical Association. AMA Code of Medical Ethics: current opinions with annotations 2008-2009.

3. American Medical Association. Declaration of Professional Responsibility. Available at www.AMA.org

4. British Medical Journal, online comments to Savulescu J. “Conscientious Objection in Medicine.” BMJ 2006;332:294-297.

Conscientious Objection in Medicine: A Moral Dilemma

May 28, 2009

aristotle_by_raphaelIshmeal Bradley MD

Faculty Peer Reviewed

Please also see the commentary by Antonella Surbone, MD PhD FACP, Ethics Editor

Consider this: what would you do if a patient with terminal pancreatic cancer told you, his primary care doctor of twenty years, that he wanted your help to end his life? Or, what if a woman in her first trimester who contracted an infection that threatened the health of her fetus asked you, her obstetrician, to perform an abortion? Ethical questions like these are encountered not infrequently today. However, they can pose a moral dilemma for the physician. Where are the boundaries between professional obligations and personal morality? Can personal morality override professional duty when it comes to patient care?

Conscientious objection in medicine is the notion that a health care provider can abstain from offering certain types of medical care with which he/she does not personally agree. This includes care that would otherwise be considered medically appropriate. An example would be a pro-life obstetrician who refuses to perform abortions or sterilizations. On the one hand, there is the argument that physicians have a duty to uphold the wishes of their patients, as long as those wishes are reasonable. On the other is the thought that physicians themselves are moral beings and that their morality should not be infringed upon by dictates from the legislatures, medical community or patient interests.

Several states in the last few years have passed laws that protect health care providers from retribution if those providers, who invoke their conscience, refuse to provide medical care. One example is the Michigan Conscientious Objector Policy Act of 2004 which allows providers to decline offering care if that care compromises the provider’s beliefs, except in the event of an emergency.[1] Furthermore, a state law in Georgia extends conscientious objection to pharmacists by allowing them to refuse to fill a prescription for emergency contraception, even to a victim of sexual assault.[2]

This issue was reignited in December 2008 by the passage of the Medical Conscience Rule by the Department of Health and Human Services in the closing weeks of the Bush administration. Then-Secretary Michael Leavitt sought to expand the scope of several laws passed by Congress in the 1970s, 1990s, and 2000s.[3] Those previous laws were designed to protect health care entities-individual providers; insurance companies; hospitals; charitable organizations providing medical care-who received any form of federal funding from reprisal if they chose not to provide certain medical services that violated their conscience, most notably abortion services.

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Is prescribing placebos an ethical practice?

February 18, 2009

placebo.jpgCommentary by Antonella Surbone, MD PhD FACP, NYU Department of Medicine, Clinical Correlations Ethics Section Editor

In October 2008, BMJ published a research article entitled “Prescribing placebo treatments: results of a national survey of US internists and rheumatologists.” Of 679 physicians who responded to a cross sectional mailed survey, over 50% reported having prescribed placebos on a regular basis. Placebos included varied from saline (3%), sugar pills (2%), OTC analgesics (41%), vitamins (38%), antibiotics (13%) and sedatives (13%). According to the authors’ definition, the placebo effect refers to positive clinical outcomes caused by a treatment that is not attributable to its known physical properties or mechanism of action, but rather to positive expectations or hopes in patients, derived from the clinical encounter. Placebo treatments, however, are quite different from each other, as saline injections or sugar pills are considered inert substances, while prescribing antibiotics or sedatives may carry adverse consequences for individual patients as well as for public health.

In the survey, physicians prescribing placebo treatments to their patients rarely used the word “placebo” (5%), in most cases describing them, instead, as treatment potentially useful, though not typically used for the patient’s illness. The authors conclude that “physicians may not be fully transparent with their patients about the use of placebos and might have mixed motivations for recommending such treatments.” Among these mixed, often conflicting motivations, the authors found the belief that a benign and safe treatment may carry some chance of a pharmacologic benefit, or might promote positive expectations in patients and reinforce their feeling of being taken care of. Some physicians treating chronic incurable illnesses may perceive the need to do something for their patients, even in the absence of any proven efficacy.

In acknowledging potential limitations of their results, the authors mention that the question items were part of a larger survey on complementary and alternative medicine and that responding physicians may have been “more favorably disposed to prescribe placebo treatments than most physicians.” Indeed, as western patients and physicians are becoming more accustomed to integrating traditional with complementary medicine, many tend to confuse placebo effects with the therapeutic ones derived from non western treatments. In oncology, for example, physicians who do not believe in alternative measures at times condescend to patients’ preferences using them in the name of a supposed placebo effect of complementary medicine The mistake inherent in such an attitude generates further confusion about the ethical justification of placebo treatments.

The study results, however, are in agreement with recent published data on the use of placebo treatments in the US and other countries, including Denmark, Sweden, Britain, Israel, New Zealand and several European countries. In my opinion, the most interesting study finding, however, is that 62% of physicians who participated in the survey believed prescribing placebos to be an ethical practice. The authors recommend further ethical and policy debate on the appropriateness of the use of placebos, yet in the article they do not explicitly argue against it on ethical grounds.

I studied medicine and initially trained in medical oncology in northern Italy, at a time when cancer patients were treated with chemotherapy without being told the truth about their diagnosis or the nature of their treatments. I recall cancer patients being at times injected with inert solutions when their pain had not responded to state-of-art analgesia at the time. The approach was deemed to be ethically justified, as the placebo effect was enough to promote a feeling of reassurance in several patients that may have taken the edge off their intense pain, by alleviating the psychological distress of feeling abandoned because their condition was helpless. Though I have witnessed many patients falling asleep after a placebo injection, and I could not feel anything but happy to see their suffering alleviated for a few hours, I always felt very uncomfortable with this practice. In my view as a young oncology fellow, giving a placebo without correctly representing it was yet another form of deception toward cancer patients, already kept in the dark with regard to their diagnosis, treatment and prognosis.

When I came to the US and started my training at the NCI, I saw that telling the truth to cancer patients didn’t hurt them psychologically. On the contrary, it gave them more inner strength to fight their illness with full awareness and supported their capacity to express their own priorities and desires and share in making important decisions. I was relieved that deception was no longer part of my practice, as I am now that international reports indicate that disclosure to cancer patients is increasingly common worldwide.

How do we reconcile truth telling with respect to patient autonomy and dignity with the prescription of placebos to patients? The AMA discourages the use of placebos by doctors who represent them as helpful, as it can undermine the trust upon which the patient-doctor relationship is based, and thus harm the patient. This seems to me a simple, clear and honest position. If we need deception in any form with our patients, it is because our therapeutic alliance with them is not solid enough.

The issue of placebos, however, is rendered more complex by the fact that placebos have been given in randomized trials with patient consent, but even this practice is still under debate. For example, the American Society of Clinical Oncology has recently issued a position statement regarding the ethical requirements for randomized study using placebos in oncology. In addition, patient advocates have stressed the importance of involving patients at the early stage of study designs involving placebos and obtaining full non-coerced patient informed consent.

The results of some studies of hypertension and depression have shown improvements in the placebo arms. Prescribing placebos in some clinical circumstances could be the right thing to do. Why, then, would we need to be less than transparent? If we believe in a placebo effect, why not our patients, in offering the placebo, that a “non-active substance” has been shown to help some patients, that we don’t yet understand whether the benefits are psychological or whether patients whose illness may sometimes remit spontaneously ascribe the improvement to the placebo.

It can be argued that the placebo effect may be invalidated by such transparency, and some physicians prescribing placebo may be afraid of undoing the placebo effect if they discuss it as such with their patients. For example, in certain psychosomatic conditions accompanied by high levels of physical discomfort for which no therapy yet exists, the lack of any treatment can generate frustration in patients who may feel judged and labeled by their physicians. Some physicians may prescribe mild or inert substances, although they may not be convinced about any therapeutic effect. Can this be effective? Probably yes, in some cases. However, is a pill the right answer to existential or psychological suffering? Are medications the right substitute for life style changes in those patients for whom these would be the most appropriate form of intervention? Are we not contributing to a culture of medicalization when spending more quality time with out patients and helping them face the roots of their problems might well be more helpful to them?

We have been brave enough to break the barriers of “protective silence” with our seriously ill patients. We should continue on a path of truth and truth telling in the patient-doctor relationship. This is the foundation for reciprocal trust and a therapeutic relationship. There is a therapeutic effect inherent in the patient-doctor relationship. It is not a placebo effect, but the therapeutic power of human connectedness, compassion and caring.

References

Daugherty CK, Ratain MJ, Emanuel EJ. Ethical, Scientific, and Regulatory Perspectives Regarding the Use of Placebos in Cancer Clinical Trials. J Clin Oncol 2008; 26: 1371-1378.

Harris G. Half of doctors routinely prescribe placebos. The New York Times, October 24th, 2008.

Surbone A. Truth telling to the patient. JAMA 1992; 268:1661-1662

Surbone A. Telling truth to the cancer patient. What is the truth? Lancet Oncology, 2006; 7: 944-950.

Tilburt JC, Emanuel EJ, Kaptchuk TJ, Curlin FA, Miller FG. Prescribing placebo treatments: results of a national survey of US internists and rheumatologists. BMJ, online publication October 23, 2008.

Wagstaff A. When is it OK to randomize cancer patients to placebo? Cancer World 2008; 27: 20-224.

X-Ray Visions: What is your radiation risk?

January 29, 2009

xraylogo.jpgCommentary by Michael Hanley MD PGY-3 and James D. Koonce MD PGY-3, Department of Radiology, Medical University of South Carolina

www.X-rayRisk.com – A Free Online Calculator that Estimates an Individual’s Additional Risk of Cancer as a Result of Medical Imaging

An estimated 62 million CT scans are obtained in the United States each year.(1) While debated, a recent study suggests that radiation exposure from medical imaging may be responsible for 1-3% of cancers worldwide.(2) With recent media coverage focusing on the risk of cancer from medical imaging, patients and physicians have become more concerned about the increased use of CT scans and x-rays. Patients are asking their primary care providers and emergency room physicians for information about their personal risk. In 2004, Lee et al concluded that “patients are not given information about the risks, benefits and radiation dose for a CT scan”. Additionally, this study found that both patients and physicians were “unable to provide accurate estimates of CT doses”.(3)

While the need for education in this area has clearly been established, there are no widely available resources that provide information to both patients and health care providers about the increased risk of cancer from medical imaging. X-rayRisk.com is a free educational website that caclulates this risk. The site is specifically designed for both patients and health care providers. One of the site’s main features is a web-based calculator that allows users to track their imaging history and estimate their personal risk. The site also provides basic information about radiation in the form of ‘Frequently Asked Questions’.

There are no published studies that prove the direct causality between medical imaging and cancer, however there is enough data to warrant precaution. Current data on radiation exposure and cancer risk is based on data from survivors of atomic bombs, nuclear accidents and the early use of x-rays. The assumed risk of cancer from medical imaging (primarily CT scans) is based on individuals exposed to atomic bombs and nuclear accidents. The theory that the increased risk of cancer holds true at these lower doses is called the linear no threshold model and is generally accepted in the scientific community.

From the Home Page of X-rayRisk.com, the user can select the ‘Calculate Your Risk’ icon. Next, the user enters his or her gender and age. There is an extensive list of different plain films (x-rays), CT scans, nuclear medicine studies, as well as fluoroscopic and interventional procedures. The user’s radiation dose, age and sex are used to calculate the additional risk of cancer based on that study. After a user builds their complete imaging history, they have the option to print, e-mail or save their report. The user can also log-in (optional) and save their report to revisit and update with subsequent studies.

Exposure data for the website was compiled from the National Academy of Sciences report on the Health Risks From Exposure to Low Levels of Ionizing Radiation in 2006, specifically the Biological Effects of Ionizing Radiation (BEIR) VII Phase 2 Report.(4) Average doses from common imaging studies were used, which were adapted from Mettler et al.(5) If exact dose is known, the user can convert their Dose Length Product (mGy • cm) to Effective Dose (mSv), then calculate additional cancer risk using conversion factors adapted from Huda, et al.(6) The website is also designed to assist in radiation exposure research and clinical record keeping.

Great effort has been made throughout the medical community to ensure patient safety while providing quality diagnostic images. It is important to realize that in a properly performed individual exam, the potential health benefits almost always outweigh the potential risks of radiation exposure. However, patients are expecting their physicians to address these risks. X-rayRisk.com provides accurate information for patients and health care providers to facilitate well-informed discussions about the increased risk of cancer from medical imaging.

References
1. Brenner DJ, Hall EJ. Computed Tomography – An Increasing Source of Radiation Exposure. NEJM 357: 2277-84, 2007. 2. Berrington de Gonzalez A, Darby S. Risk of cancer from diagnostic x-rays: estimates for the UK and 14 other countries. Lancet 363:345-51, 2004.
3. Lee CI, Haims AH, Monico EP, et al. Diagnostic CT Scans: Assessment of Patient, Physician, and Radiologist Awareness of Radiation Dose and Possible Risks. Radiology 231 (2): 393-398, 2004.
4. National Research Council. Health risks from exposure to low levels of ionizing radiation. BEIR VII Phase 2. Washington, DC: National Academies Press, 2006.
5. Mettler FA, Huda W, Yoshizumi TT, Mahesh M: Effective Doses in Radiology and Diagnostic Nuclear Medicine: A Catalog. Radiology 248: 254-263, 2008.
6. Huda W, Ogden KM, Khorasani MR: Converting Dose-Length Product to Effective Dose at CT. Radiology 248:995-1003, 2008.

The Genetic Information Nondiscrimination Act (GINA)

October 25, 2008

images4.jpgCommentary by Bani Chander MD, PGY-3.  Reviewed by Antonella Surbone MD PhD FACP, Ethics Section Editor.

On May 21, 2008, president George W. Bush signed the Genetic Information Nondiscrimination Act (GINA) into effect. After 13 years of debate in Congress, the bill finally passed through both the senate and the house nearly unanimously. So what is GINA? This piece of legislation prohibits insurance companies from taking into account genetic conditions or family history when determining risk assessment. In addition, GINA makes it illegal for employers to make employment and promotional decisions based on genetic information, with fines up to $300,000 per violation. In effect, this means that people with increased risk for genetic diseases will no longer lose their jobs, pay higher insurance premiums, or be denied coverage all based on the premise that these individuals have no control over their genes. Ultimately, the increased cost to cover people with genetic diseases is spread over a larger insurance pool and the cost for “bad genes” is shared by those with low or unknown genetic risk. The health care regulations will go into effect 12 months after the bill’s passage and the employment regulations will begin at 18 months.

GINA has been welcomed as a legislation act that will greatly improve Americans’ access to the personal and research benefits of genetic testing. In the past, many people have foregone genetic testing that could potentially be life saving, out of concern that insurance companies may discover the results of these tests. These individuals then miss out on the chance to seek preventative care measures, monitoring, or have interventions that could cure or at least prolong life. GINA now makes it possible for these individuals to have genetic testing done without concern about negative repercussions. In turn, this may lead to decreased long term health care costs, if prevention or early interventions will prove to be cost-effective, and GINA may also encourage research to understand and develop new treatment modalities for genetic diseases.

While GINA does protect people with a higher risk of certain genetic diseases, it does not protect everyone. GINA does not provide protection to a person who already has a disease. An individual who has Barrett’s esophagus discovered on EGD or several adenomatous polyps on screening colonoscopy, for example, is not only not protected, but may suffer from higher rates of insurance than they would have pre-GINA, given the spreading of costs among persons with and without genetic risks.

It is certainly true that the Genetic Information Nondiscrimination Act protects people from having to pay more for simply having bad genes. Certain questions remain. If we are willing to prohibit insurance companies from taking into account genetic predisposition, should we also go one step further and protect those who already have an established disease? Ultimately, it remains to be seen whether GINA is a step in the right direction towards a more just health care system or will, unexpectedly, make health care unaffordable not only for the very sick, but also for the well.

Please see next page for references

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Ethical Responsbilities After GINA

October 25, 2008

Commentary by Antonella Surbone, MD PhD FACP, Ethics Section Editor

The Genetic Information Nondiscrimination Act (GINA), passed by the US Congress on May 1st 2008, protects individuals against discrimination by health insurers and employers on the basis of genetic information.(1-4) Genetic information refers to genetic tests of a person’s or a family member up to fourth-degree relatives. Genetic test is any analysis to detect genotypes, genetic mutations or chromosomal changes, not including analysis of proteins or metabolites directly related to a manifested disease. Genetic information also refers to any manifestation of disease or disorder in a family member, and/or to the participation of a person or family member in research that involves genetic testing, counseling or education. GINA does not regulate insurance under-writing based on a person’s current health status, does not mandate coverage for any particular test or treatment, and does not cover life, disability or long-term care insurance. (2,5) Finally, GINA does not interfere with health professionals’ recommendations for genetic testing to their patients. (2, 4)

Among common genetic tests protected by GINA are tests for BRCA 1 and BRCA 2 mutations and HNPCC mutations that predispose to an increased risk of breast, ovarian, colon and other cancers, as well as tests that help classify the genetic profile of an existing cancer. The bill is thus especially relevant to the field of oncology, as until recently many patients have refrained from undergoing genetic testing for fear of discrimination. This, in turn, has limited individuals’ access to information that may have benefited them in terms of cancer prevention or early diagnosis and treatment, and it has also hampered the conduct of research studies on the biology and treatment of cancers associated with specific genetic mutations. (2) For example, as the availability of BRCA testing increased and knowledge about prevention and management in mutation carriers improved, many at risk refrained from being tested, due to fear of discrimination by health insurance or by actual or potential employers. [6] Similar concerns were also reported among genetic experts and oncologists. [7]

Notorious cases of genetic discrimination have occurred in the past in the US with regard to life and health insurance, the employment market, and in access to higher education and adoption. Measuring the real magnitude of genetic discrimination is an arduous task, yet recent cases have been documented. [8,9] Mutations carriers can also be subject to more subtle forms of discrimination in their microenvironment. [10] A BRCA positive patient told me she was equally worried about passing onto her daughters the risk of cancer, and of their being exposed to discrimination because of her diagnosis. “With good laws, she said, my daughters may find great jobs, but they may still not be seen as ideal spouses or mothers.”
While some authors have pointed out that society’s concern for genetic discrimination may have been excessive , the awareness of such risk led to the active engagement of medical and patient organizations, which contributed to the development of anti-discrimination legislation in the US and other countries. [2,11] GINA is, in large part, the result of the anticipatory work of researchers and clinicians involved in the development of the Human Genome Project who started voicing their concerns about the risk of genetic discrimination at the outset of the project. [8, 12-14] With GINA, patients’ fear of genetic discrimination will be substantially lowered.

As the piece by Dr. Chander stresses, several aspects of GINA remain to be evaluated in future years, when we will be able to verify its effectiveness not only in protecting mutation carriers, but also in making health care more just for all. For example, the European experience with antidiscrimination legislation seems to have been less effective than expected against the use of genetic information in insurance practice. It has been suggested that, due to lack of clear definitions of terms and boundaries between genetic and non genetic tests and data, some legislation may have “provided only the illusion of protection.” [15] Also, the European legislation may have afforded legal protection of genetic risks while leaving non genetic risks under-protected, with a special disadvantage for lifestyle risks. [15]

From an ethical point of view, GINA is a most important result of many years of antidiscrimination work supported by scientists, clinicians, patient advocates and policy makers. Yet, the ultimate response to discrimination involves deep cultural changes, beyond legal and regulatory issues, to foster a non discriminatory approach to illness and disability based on understanding and acceptance of all form of diversity. [16-18] With the recent introduction of direct-to-consumer genetic testing, which includes proven and still unproven genetic markers for common multifactorial diseases, comes a new wave of concerns regarding the untoward medical, psychosocial and ethical consequences of for-profit genomic profiling. [19-22] As we approach the era of personalized medicine based on genomic profiles, we must continue to assure the safety, reliability and clinical value of all genetic tests offered, and to debate ethical issues, such as genetic privacy and genetic responsibility, through a balanced, non determinist, view of genetic information. Genetic knowledge, in fact, can be perceived either as a means to enhance control of persons’ lives or as a sign of predestination written in a mysterious “future diary.” [5, 18, 23] In the end, as Dr. Billings wrote in August 2008, “antidiscrimination laws are only effective as guideposts to better understanding and tolerance.” [17]

REFERENCES

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Ethics Q&A

September 16, 2008

Q: What is the appropriate response for an internist to the phone call from a friend….”I hate to ask you but,….I have this minor problem and could you help me over the phone or in your/my house?” Some of these friends are officially your patient, some are not. I have dealt with this twice already this week.

–Deborah Shapiro MD

A: Commentary by Antonella Surbone MD PhD FACP, NYU Department of Medicine, Ethics Section Editor

The issue of dealing with taking care of family and friends is one that we all may face often, if not daily, and it may helpful to delineate the ethical implications of refusing to help or helping too much. Medical care, even when limited to providing advice, carries consequences and responsibilities. Family and friends tend to ask, but then not to necessarily to follow, our recommendations, as they occur outside a structured therapeutic relationship.

The patient-doctor is an asymmetrical relation of help, born from the patient’s need of the knowledge and expertise of the physician and based on reciprocal responsibilities and obligations in view of a shared therapeutic goal. The patient-doctor relationship requires proper boundaries and honesty regarding each party’s roles and expectations, in order to assure that reciprocity goes along with the necessary distance and authority. Physicians earn this through their professional competence and adherence to high ethical standards.

Most medical codes of ethics discourage taking care of relatives and close friends, because of potentially excessive emotional involvement of the physician that may cloud his or her clinical judgment. In many countries, physicians are also warned against possible legal repercussions.

We all, however, find ourselves in situations similar to the ones described by Dr. Deborah Shapiro, or even in worst scenarios, when the relative or close friend ask for opinions or advices about serious illness, such as cancer. Dr. Shapiro describes friends (at times also her patients) who request medical advice for what they consider a relatively minor problem, and ask to be seen at home. In my personal experience as a medical oncologist working on both sides of the ocean, requests of family and friends for my opinion about the quality of individual oncologists or cancer institutions are very frequent, as are requests for informal second opinions about cancer treatment.

These requests can be burdensome, as friends or relatives almost always pose their questions in terms of urgency and expect our immediate availability. This often generates frustration, especially since, in most cases, friends or family members do not end following our advice and often fail follow-up with us on their condition and treatment. At times, a friend calls after months or even years expecting us to remember all details of an opinion that we gave by phone or over a cup of coffee.

Yet, what should we do? The key to being a good physician is caring for the well being of other persons, and we cannot exclude friends and family from those we care about. The effectiveness of help that we can give our patients, and also our friends and relatives, however, is greatest when the obligations and limitations of the patient-doctor relationship are explicated and respected.

Cross-cultural variables may also influence our decision to provide advice or care to family and friends. Physicians who know most of their neighbours are more available to provide advice or make informal house calls, as they know more about the lives of their friends and neighbours than is the case for most physicians in industrialized countries or urban areas.

The ethical issues involved are complex and go beyond the space limitations of my answer to Dr. Shapiro. Responding to the requests for medical advice and occasionally care of our friends or relatives is an act of altruism that can be highly rewarding. Yet, it is ethically wrong to becoming excessively involved when the friend is not our patient and is under the care of another physician, or to provide too detailed advice without knowing all the facts and history, or to answer medical questions that go beyond our field of expertise.

The patient-doctor relationship is an asymmetrical professional relation with clear boundaries and responsibilities. The ethics of this relation requires that we discern when the demands of friends and relatives are reasonable or inappropriate and act based on our own comfort level with respect to the physician in us. Without being afraid to ruin a friendship or a family bond, on occasions we can tactfully say “I’m not comfortable discussing this subject with you and I’d prefer to let your doctor give you advice, since he or she knows your case and is treating you.” In many other occasions, we can provide simple and clear answers, offer our help as navigators, or assist our friends and relatives at times of difficult decision-making.

Surbone A, Lowenstein J. Asymmetry in the patient-doctor relationship. J Clin Ethics 2003:14: 183-188.

Old age and frailty: Biology and Socio-cultural Constructs

August 21, 2008

41_01_52-elderly-people_web.jpgCommentary by Antonella Surbone MD PhD FACP, Department of Medicine, New York University Medical School, Clinical Correlations Ethics Section Editor

According to the Institute of Medicine (IOM) report of April 14th, 2008, the elderly comprise 12% of the U.S. population, and their number is projected to almost double between 2005 and 2030, from 37 million to 70 million. The elderly currently account for more than one third of all hospital stays and of prescriptions, and more than a fourth of all office visits to physicians in the U.S. The average 75 year old American has three or more comorbidities and takes at least four medications. [1] Thus, delivering optimal geriatric care has become a medical and ethical priority in our aging society.
In western countries, old age tends to be represented mostly in terms of decreased productivity, functional impairment, co-morbidity, cognitive limitations and the burden of care placed on the family and the health care system. Healthcare providers thus tend to view the older population through a skewed “ageist” prism, acting on assumptions of uniform frailty and cognitive impairment. This distorted appraisal continues to limit the appropriateness of care and the adequacy of research and education in geriatrics. The older adult population, however, is physiologically, psychologically, socially and culturally heterogeneous. [2]

Aging involves a progressive decline in the functional reserve of multiple organs and systems that modulate the person’s adaptation to stress. [3] The word “frailty” has been often used improperly to refer to elderly patients’ increased vulnerability, when compared to younger adults. As reported by Dr. Sutin, research has lead to a precise conceptualization of frailty as the result of the interplay of physical, psychological, cognitive, functional, social and environmental factors [4,5]. Comorbidity, disability and frailty may occur in elderly patients as separate or concomitant entities, and their multidimensional assessment should guide clinical decision making in geriatrics.

In geriatric oncology, for example, the patient’s frailty often limits the safety of administration of standard and experimental treatments. Frailty, however, may result from the patient’s underlying cancer, and it can be improved or even reversed by active oncologic treatment. [6,7] Studies show that the frequent under-treatment of elderly cancer patients and their under-representation in clinical trials frequently stems from misconceptions about an inevitable correlation between aging, vulnerability and frailty. By contrast, available data suggest that age itself, in the absence of severe concomitant illnesses or psychological, cognitive or functional impairment, is not an independent risk factor for either increased toxicity or lack of cancer treatment efficacy. [8]

The distorted cultural perception of age that dominates most western societies, known as ageism, has a major influence on our attitudes toward, and practices of, providing health care to elderly patients, who often suffer from social isolation due to the loss of their past former productive roles. Poverty is especially common in the elderly, and socioeconomic, combined with cultural, factors in ethnic minorities in western countries limit their access to medical care and research. [2] Frailty is worsened by lack of social support and elderly patients are at risk for diminished quality of life and increased psychological stress.

In conclusion, when offering specific treatments to elderly patients, we must take into consideration different medical, psychological, functional and social factors. Understanding the determinants of frailty and learning how to recognize and measure it in the clinic is essential to achieve the objective of basing our clinical judgments on sound evidence, rather than on cultural myths, biases, or prejudices that rather endanger quality and effectiveness of geriatric care.

1. Institute of Medicine. Retooling for an aging America: Building the health care workforce. Committee on the Healthcare Workforce for older Americans- Washington, D.C.: The National Academies Press, 2008.

2. Lipsitz LA. Physiological complexity, aging, and the path to frailty. Sci Aging Knowl Envir 2004; p. pe16.

3. Fried LP, Ferrucci L, Darer J, Williamson JD, Anderson G. Untangling the concepts of disability, frailty, and comorbidity: implications for improved targeting and care. J Gerontol 2004; 59: 255-263.

4. Balducci L. Aging, frailty and chemotherapy. Cancer Control 2007; 14: 7-14.

5. Monfardini S, Basso U. Oncological causes of frailty in older cancer patients. Eur J Cancer 2007; 43:1230-1231.

6. Surbone A, Kagawa-Singer M, Terret C, Baider L. The illness trajectory of elderly cancer patients age across cultures: SIOG position paper. Ann Oncol 2006; 18:633-638.

7. Surbone A. Ethical considerations in conducting clinical trials for elderly cancer patients. Aging Health 2008; 4: 253-260.

Image courtesy of FreeFoto.com