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Recently by François Pouliot M.D., Ph.D.

By Francois Pouliot, M.D., Ph.D., assistant professor, Department of Anesthesiology and Critical Care and Susan Gaeta, M.D., assistant professor, Department of Critical Care

Providing information and counseling to patients and families about care options at the end of life is often difficult for even well-trained professionals, yet such information is essential to patient care and empowerment. We will look at the initiatives launched recently in New York and California, before assessing the situation in Texas.

New York - The "Palliative Care Information Act"
Since Feb. 9, 2011, information and counseling concerning palliative care and end-of-life options must be offered in the State of New York to patients with an illness or condition expected to cause death within six months.

According to the law, palliative care is "health care treatment, including interdisciplinary end-of-life care, and consultation with patients and family members to prevent or relieve pain and suffering and to enhance the patient's quality of life, including hospice care."

Patients will be fully informed of the options available to them, so that they are empowered to make choices consistent with their goals for care, wishes and beliefs, and to optimize their quality of life. The law is not intended to limit the options available to terminally-ill patients. Nor is it intended to discourage conversations about palliative care with patients whose life expectancy exceeds six months.

The information provided will include

  • Prognosis;
  • Range of options appropriate to the patient; 
  • Risks and benefits of various options; 
  • Patients' "legal rights to comprehensive pain and symptom management at the end of life."

In its 2002 report ("The Ethics of Research Related to Healthcare in Developing Countries"), the Nuffield Council concluded that externally funded research in developing countries is crucial but must be subject to rigorous ethical safeguards to prevent the exploitation of those who take part. Rather than setting out guidelines, the report provided an ethical framework for those designing or conducting externally sponsored research in the developing world.

In 2005, a follow-up paper ("The Ethics of Research Related to Healthcare in Developing Countries: A Follow-up Discussion Paper") went further. Four very sensitive topics were identified:

  • Consent
  • Standards of care
  • What happens after the research is over
  • Ethical review
The follow-up paper agreed that the ethical review of research plays a crucial role in protecting research participants. But several other related themes emerged:

  • Adequate review of ethical and scientific aspects of research proposals
  • Efficiency
  • Collaboration between different institutional review boards (IRBs), particularly committees in host and sponsor countries
  • Capacity building
Capacity building is a key issue. According to the Joint United Nations Program on HIV/AIDS ("Creating Effective Partnerships for HIV Prevention Trials: Report of a UNAIDS Consultation," Geneva 21-21 June 2005), research can and should be used as a means of incrementally improving local standards of care and building infrastructure, research governance and human capacity.

Institutional Review Board (IRB) Is Here to Protect You
By Francois Pouliot, M.D,  PhD., assistant professor, Department of Anesthesiology and Critical Care, MD Anderson

lab1.jpgIf you are a patient at MD Anderson Cancer Center, you might have been invited to be part of a research project. By research we mean a systematic investigation designed to develop or contribute to generalizable knowledge.

As a participant you may be asked to take a new drug, be part of a cognitive intervention to change your behavior, or simply authorize the analysis of blood specimens and medical information.

The term bioethics was first used in the early 1970s to address the ethical implications of genetic and ecological interventions. But it was soon applied to all aspects of biomedical ethics, including health care delivery, research, and public policy. 


Its literature draws from disciplines as varied as clinical medicine and nursing, scientific research, theology and philosophy, law, and the social sciences -- each with its own distinctive vocabulary and expressions.

History of bioethics
In 1970, Van Rensselaer Potter II, an American biochemist and professor of oncology, created the term bioethics to describe a new philosophy integrating biology, ecology, medicine and human values (Bioethics: Bridge to the Future, Prentice-Hall, 1971). It covered, in his mind, what we now call environmental ethics and biomedical ethics. 

Because of the appropriation of the term bioethics in medicine, Potter chose to use the term global bioethics in his book, Global Bioethics: Building on the Leopold Legacy, published in 1988.

global_bioethics.jpg

Recommended readings in bioethics
For a broad overview of the history of medical ethics, one can benefit from A.R. Jonsen's book, A Short History of Medical Ethics (Oxford University Press, 2008). He tells the story of more than 2,000 years of moral discourse about medicine, covering traditions in both the East and West. 

The book highlights particular events and persons, showing that even though there are some cultural differences, common themes coalesce in a long tradition of the ethics of medicine.

If you like story telling or enjoy our Difficult Case Reviews, you will be interested in the book from P.J. Ford and D.M. Dudzinski (eds.) called Complex Ethics Consultations: Cases that Haunt Us (Cambridge University Press, 2008). Twenty-eight detailed cases explore the ethical reasoning, professional issues and emotional aspects of these impossibly difficult consultations. The cases are grouped by theme to aid teaching, discussion and professional growth.

Additional resource
bioethics.jpgIf you prefer encyclopedias, dictionaries and glossaries, then A Handbook of Bioethics Terms by JB Tubbs (Georgetown University Press, 2009) could be a good introduction to the field with over 400 entries on the significant terms, expressions, titles, and court cases that are most important to the field. It is surely more user friendly than the 3000 plus page Encyclopedia of Bioethics edited by SG Post (Macmillan Reference USA, 3rd edn., 2003)!

If you prefer "classics" in the field, try reading T. Beauchamp and J. Childress': Principles of Biomedical Ethics (6th edn., Oxford University Press, 2008). It teaches the widely-known "Four Principles Method": beneficence, nonmaleficence, autonomy and justice. No one can understand the field of bioethics in the United States apart from this volume. The latest edition integrates case studies throughout the text, rather than presenting them in an appendix as in previous editions.

If you are looking for practical guides to help you at the bedside, two short books can be recommended. The first is Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine by AR Jonsen, M Siegler and WJ Winslade (7th edn., McGraw-Hill, 2010). Clinical Ethics presents the, "Four-Topics Method" to help you make the right choice when facing complex ethical questions and dilemmas encountered during everyday patient care. It goes beyond theory to offer a solid decision-making strategy applicable to real-world practice. The second, Doing Right: A Practical Guide to Ethics for Medical Trainees and Physicians (Oxford University Press, 2008) written by PC Hebert, offers a variety of clinical vignettes and concise teaching.

Finally, on-going discussions in bioethics and useful information can be found in The American Journal of Bioethics (AJOB).




MD Anderson Cancer Center offers an internship in clinical ethics. Interns in the program learn more about clinical, research and/or organizational ethics and truly contribute to activities and projects of the Section of Integrated Ethics here. 

One of the interns, Lilian Alvarez, tells us more about her experience in clinical ethics.

Lilian, tell us more about yourself.

I have a background and degree in philosophy and more than five years of community health education experience. 

I have worked for several other health organizations, including the UT Medical Branch in Galveston and various breast cancer non-profit organizations, managing and developing health education programs. I have also worked extensively with local communities, providing health education and organizing local health coalitions.

My main interest is to help strengthen individuals and communities to become sufficiently empowered so as to make well-informed health decisions. My interest in clinical ethics stems from a desire to see that every patient's rights and autonomy is well respected in the health setting given their medical situation.

Why did you apply for a clinical internship?

My goal was to obtain first-hand knowledge of clinical ethics in practice and observe situations with major ethical dilemmas. Also, to learn the method for analyzing ethical dilemmas in the hospital setting and how to participate in the decision-making process.

What have you done so far during your internship?

I've attended weekly clinical rounds with physicians, social workers, patient advocates and clinical ethicists to discuss patient cases. I've also attended several monthly events where physicians visit the community to provide palliative and hospice care to patients.

The "easiest" part of this internship was having the opportunity to attend all activities and rounds related to clinical ethics. The most challenging part of the internship has been to maintain focus without becoming too involved with the varying cases and not "take home" the patient issues and dilemmas of the day.
    
What are the most important things you've learned during this experience?

I have truly learned what it means to be a clinical ethicist and about the current status of the field. It was refreshing to know that many others within the field have the same passion to protect patient rights. Also, I've gotten very good advice from my mentor on the best academic route to becoming a clinical ethicist.

What comes next?

I want to utilize my law degree in combination with my experience as a clinical ethics intern to better protect the rights of the patient in and out of the hospital setting.

 

By: François Pouliot, Ph.D., M.D., assistant professor and clinical ethicist, Department of Critical Care

Five interns had the chance to discover clinical, research and/or organizational ethics during the summer and to contribute to activities and projects of the Section of Integrated Ethics at MD Anderson Cancer CenterOne of them, Thomas Hoang, tells us more about his experience in Clinical Ethics.

ethicsintern.jpg

Tell us more about yourself

I attend The University of Texas at Austin. I am pursuing a degree in biology and a minor in Spanish. After receiving my undergraduate degree, I plan to embark on a career in medicine, and plan on applying to medical schools shortly after I graduate. Health care has always been an interest of mine since I was young, and it continues to be because I admire the profession of a physician. Helping others and living a life of selflessness are two virtues that I've come to believe will satisfy me in this lifetime, and both are intertwined within the career of a doctor.

 

Why did you apply to a clinical internship?

Before I was appointed to this intern position, I had a background in the hard sciences more than I did the philosophical and ethical. We all know that health care is heavily science-based, but there is that other dimension of ethics that is also very important to patient care. My previous experiences in a clinical setting were administrative and more focused on hospitality toward the families of the patient. I applied to this internship to gain more exposure  to patients, to see other aspects of the clinical setting and to understand that health care is not just science, but that there are many other spectrums of patient care that are just as important as the surgeries, lab techniques, DNA assessments and epi tubes.

 

What is an average day like in this internship?

I have done a wide array of things in the duration of this summer internship. My daily schedule for this past summer consisted of researching and reading in an effort to gain a better understanding of ethics, I attended rounds in the ICU, attended various lectures that address many different aspects of health care, took a survey course in clinical ethics, and researched for the design of a protocol to create an efficient screening tool. The experience I've gained from doing these things has been extremely beneficial to me.

One event I remember very clearly was the bus rounds hosted by Dr. Eduardo Bruera and his colleagues. This was quite intriguing to me because it gave me exposure to terminal patients, which was quite difficult to deal with at first. Overall, the kind of exposures to patients I had this summer further developed my interests in seeking a profession in health care.

 

What are the most important things you learned during this experience?

Aside from the clinical experiences and research experiences, this internship let me dive into the daily work life of the health profession. It allowed me to work with a diverse group of professionals and colleagues that I have learned so much from. Learning about the organizational structure of a large medical institution like the well-renowned MD Anderson Cancer Center was a great experience.  It defined for me all of the types of people involved in health care. I also had great exposure to research creation and protocol review. The most interesting was being able to attend an Institutional Review Board (IRB) session and to see how they review protocols, as well as being involved in creating one to potentially be submitted through the IRB.

 

What comes next?

I will continue to pursue acceptance into a medical school. This experience has been a privilege and will be very beneficial to me as I continue with my education. I have a year left of undergraduate study and, hopefully, this experience will make me a more competent medical school candidate. I have learned during my tenure here at MD Anderson that many health professionals are not aware of clinical ethics and its importance especially to the patient. If my goals are achieved, I will practice medicine with the utmost respect for patient autonomy, beneficence, non-maleficence and justice.


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