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Topic: End of Life Care
July 11, 2011 | Posted By Ricki Lewis, PhD

”Dignity therapy" is a “novel psychotherapeutic approach” that gives patients with a 6-month life expectancy “an opportunity to reflect on things that matter most to them or that they would most want remembered.” In these days of medical experts such as Sarah Palin equating reimbursed end-of-life discussions to death panels killing granny, an outcomes evaluation of any such intervention is essential. Harvey Max Chochinov, of the University of Manitoba and colleagues in the U.S. and Australia did just that. Their impetus: “… although much progress has been made in our ability to achieve physical comfort for patients who are dying, few novel interventions have been designed to address the psychosocial, existential, and spiritual dimensions of end-of-life care.”

In an admittedly difficult-to-design study, the investigators randomized 326 patients (most of whom had cancer) to one of three interventions: dignity psychotherapy, palliative care, and client-centered care (which focuses on the “here and now” as opposed to the past and future perusal of dignity therapy). Their article in Lancet Oncology provides 9 questions that a trained dignity therapist might pose to a patient. Responses are recorded and typed up, then presented to the patient as a “generativity document.” Various before-and-after rating scales as well as patient comments revealed improvement in quality of life and family relationships with dignity therapy, although general distress was not significantly alleviated with any intervention. 

Oddly, for Dr. Chochinov is an award-winning palliative care expert, the report mentions “hospice” only as a possible physical setting! In fact, hospice volunteers have been providing dignity therapy for decades. 

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

June 3, 2011 | Posted By Danielle Holley, JD, MS

In 2010, the New York State legislature passed, after 17 years, the Family Health Care Decisions Act (FHCDA), codified in NY Public Health Law Art. 29-CC (2010).  This law provides a much-needed mechanism to make decisions for incapacitated individuals who have not appointed an agent under the health care proxy.  The law creates provisions to appoint a surrogate or allow physicians to make decisions for incapacitated individuals who have no one.  This is extremely important as most people have not appointed an agent to make decisions for them if they lose capacity.  The law also acknowledges emancipated minors and provides provisions for an emancipated minor to withdraw or withhold life-sustaining treatment.  The FHCDA also made an important step in allowing for decisions, including decisions regarding withdrawal or withholding of life-sustaining treatment, to be made based on the patient’s known wishes but if those are unknown, in the best interest of the patient, therefore not relying anymore on the higher standard of clear and convincing evidence.  

The FHCDA also recognizes an important mechanism, that of the Ethics Committee.  The law requires that each hospital and nursing home have an ethics committee, whether it is institutional or community-based, to assist in making decisions under certain circumstances.  The ethics review committee can be used to mediate disputes.  The law also gives binding authority for the Ethics Review Committee’s decision in two circumstances, including (1) when an attending physician objects to the surrogate’s decision to withdraw or withhold artificial hydration or nutrition, and (2) when an emancipated minor seeks to withhold or withdraw life-sustaining treatment.  Conferring binding authority thus allows the committee to be the arbitrator instead of resorting to a court proceeding, 

The law makes some important changes; however, it is very long and has a lot of provisions and checks.  To assist practitioners in the hospital in applying the law, we developed a set of algorithms.  The algorithms are a set of eight charts that lay out the provisions of the law.  These algorithms are intended to guide practitioners but do not cover all possible scenarios that may arise.  So far, it has been a great resource and guide for practitioners in facilitating the decision-making process for those who lack capacity.  

Click here to see the full publication.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

May 16, 2011 | Posted By Posted By David Lemberg, M.S., D.C.

A bioethicist, obviously, is a person who practices bioethics. But what does this entail? On one hand, bioethics could be narrowly construed as focusing on medical ethics. A broader perspective exists, based on an expansion of bioethics to "biological ethics". Both frameworks, the narrow and the broad, are eminently valid and neither needs to exclude the other.

The need for bioethics and bioethicists is greater now than ever. Bioethicists are able to offer substantial value to communities at all levels, ranging from the level of the individual (a community of one) to the level of the planet (a global community), conceived as an intricately interwoven biosphere.

Let's get specific. What are the kinds of things that bioethicists do?

A bioethicist could be a member of a hospital staff and function as a clinical consultant. Bioethics consultations facilitate patient care in

  • Determining capacity/competency related to making an informed choice
  • End-of-life planning and decision making
  • Determinations of medical futility
  • Assisting families in making decisions regarding withdrawal of life support

A bioethicist may also function as an ombudsman for the patient and family, helping to establish ongoing clear and effective communication among all concerned parties. Depending on the context and the need, she would consult with the patient, the patient's family, medical staff, and administrative personnel.

In such a practice, the bioethicist is applying daily the principles of autonomy, beneficence, nonmaleficence, and justice. He is engaged in rewarding, exciting, ever-changing work with real people grappling with real, life-impacting challenges. Every day presents new opportunities to help make a meaningful difference at an individual, family, and community level.

And, much more is possible. Bioethics need not be restricted to the medical arena. Looking beyond the world of hospital practice, there are an abundance of opportunities for the bioethicist to paint with a broader brush.

For example, what are the responsibilities and accountabilities of global pharmaceutical companies? Almost 3 billion people worldwide live on less than $2 per day. These persons do not have the wherewithal to afford life-saving medications. The pharmaceutical giants are very glad to conduct clinical trials in developing nations where the costs of doing business are substantially lower than in their home countries. But these companies do not reciprocate and provide drugs at cost to indigent communities and societies. Bioethicists can help create policies focusing on distributive justice to be implemented by multinational pharmaceutical corporations.

The fields of wildlife conservation, sustainability, and renewable resources could all be enhanced by bioethics-informed policy. Human health and welfare depend not only on our interactions with each other. If bioethics intends to support the thriving of humans, it necessarily intends to support the thriving of redwood forests, coral reefs, butterflies and bumblebees, songbirds, and tuna and salmon. Natural capital and ecological services are valued at many trillions of dollars annually. Each of the four iconic bioethical principles is intimately related to maintenance and support of our natural world.

Bioethicists may work in universities, hospitals, all levels of government, policy institutes, and NGOs. Importantly, bioethicists could also work in corporations. What sort of corporation—national or multinational—would hire a bioethicist? If the corporation’s sole interest is its bottom line, i.e., profit and shareholder dividends, bioethics would most likely not fit into its strategy.

But a corporation’s board could have a different vision. Such a board could understand that the organization's long-range welfare is closely tied to the global economy, which is closely tied to the welfare and productivity of all populations, which is closely tied to ensuring the ongoing viability of environmental resources and ecological services. Such a corporation’s goals would be greatly furthered and assisted by having bioethicists on staff.

Too often, an observer of the field gets the impression that bioethics is primarily concerned with parsing ever finer notions of patient autonomy. On this view, it is IRBs rather than angels which are dancing on the head of a pin. Switching metaphors, such navel-gazing helps no one, except to provide meager support for struggling academic careers.

Bioethics is not this. Bioethics is the broad end of the funnel. Almost 50 years ago in his famous book Love and Will, the American psychologist Rollo May described the transitional nature of then-modern 1960s society. Those transitional qualities have persisted rather than resolved. The global economy is in crisis. Global climate change is apparent. Environmental resources and species diversity are at great risk. Health care, as such, is unrecognizable compared to 50 years ago, and not in a good way.

Bioethics and bioethicists can provide unique perspectives and original solutions in helping resolve the diverse challenges facing not only the United States but our global society. Bioethics and bioethicists can participate fully and become critical assets in humanity's search for meaning, self-realization, and discovery of arete.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

May 2, 2011 | Posted By Posted By David Lemberg, M.S., D.C.

Bioethics Today — A Manifesto

The field of bioethics is in the right place at the right time. The right place is at the intersection of medical practice, health care delivery, health care policy, and development of clinical guidelines and standards of care. The right place includes bioengineering, nanotechnology, pharmaceutical R&D, and environmental conservation and sustainability. Bioethics concerns range far afield, encompassing reproductive medicine, regenerative medicine, stem cell research, and man–machine interfaces.

Bioethics investigates and explores the underpinnings, ramifications, and implications of democracy, human rights, freedom of the individual, the existence of free will, and the origins and implementations of moral and ethical systems.

The right time for bioethics is right now. The present moment. The great philosopher Arthur Schopenhauer wrote, "Future and past are only in the concept. . . . The present alone is the form of all life, but it is also life's sure possession which can never be torn from it."1

In short and in effect, bioethics focuses on being-in-the-world. That is a pretty big mandate. The practical result is that there is unlimited opportunity for innovation and development of outside-the-box solutions to real-world problems. For example, the health care system is desperate for impactful and visionary leaders. In the United States we have several dozen, possibly more. Yet the actual need is for hundreds, even thousands, of such leaders, operating in government, industry, higher education, health care delivery complexes, and non-profit policy centers.

Bioethical conundrums abound, including

  • The six-figure-plus annual costs of many cancer medicines
  • The ongoing lack of access to and availability of HIV medication in Africa and Southeast Asia.
  • Access and availability of health care services, worldwide
  • The moral status of the embryo and the ethics of embryonic stem cell research
  • End-of-life decision making
  • Prenatal genetic testing and counseling. Reproductive freedom, including IVF, same-sex parenting, and surrogacy

The world of bioethics is as big and broad, as deep and rich, as extensive and wide-ranging as the world we live in. The problems and challenges of humans (as the presumptive stewards of the planet) are the problems and challenges of bioethics. The historical four principles of bioethics—autonomy, beneficence, nonmaleficence, and justice—provide a firm foundation for this next generation of work to be done. These principles represent a launching pad for a new phase of endeavor. A phase in which bioethics can provide insight, guidance, and action steps to facilitate the thriving of all species, inclusive of our entire ecosphere.

1Schopenhauer A: The World as Will and Representation, Vol. 1, p 278. New York, Dover Publications, 1969

The Alden March Bioethics Institute offers graduate online masters in bioethics programs.  For more information on the AMBI master of bioethics online program, please visit the AMBI site.

April 13, 2011 | Posted By Sheila Otto, MA, BSN

A New York Times article, found here, regarding the current state of dialysis in this country was worth reading. However what was even more interesting (to me) was the range of comments that were subsequently submitted. The article recalled that dialysis as a treatment for end stage renal disease was first instituted in the 1960s as a life saving treatment which was intended to get patients back on their feet and return to the workplace. Today, it is used primarily in the elderly population and often in conjunction with other major co-morbidities, at times to stave off the grim reaper for a short time. The author questions whether this expensive intervention is in the best interest of the patient, or the best allocation of scarce resource dollars. 

Many of the comments agreed with the suggestion for a second look, given the limited benefits and the enormous costs of the expanded base. Others wrote that limiting life sustaining treatment was an immoral act; that targeting the elderly was patently unfair; that if we started limiting this service, it would be the first step down the slippery slope; and of course the ever present voice that we could have unlimited care if only we cut defense spending or foreign investment. 

What continually astounds me is the view that limits are unacceptable, yet we cannot expect taxes to rise and we should be prepared for decreases in government health care budgets. So who is supposed to pay? Somehow the rights of individuals always trump that of the society. No one can put a price tag on a life. If my demented 90-year-old mother can live another month with dialysis, she should be entitled, so the argument goes. As medical care has continued to expand with ever more expensive drugs and equipment, costs have risen dramatically. There are still, as we know , millions without any coverage as well as the insured who are being asked to pay larger premiums, as one would expect, to keep up with the rising costs.  Small businesses and state governments are struggling with these increases to the point of crisis. It would seem that distributive justice would dictate first, access to all and then fair distribution of services that we can afford. Any way we cut it, there are limits. Why should any group be exempt?

March 4, 2011 | Posted By Bruce D. White, DO, JD

At first glance, one might wonder if the article in today’s New York Times by Deborah Sontag—“Immigrant’s Health Crisis Leaves Her Family on Sideline”—is signaling a paradigm shift in health care delivery that may be just as dramatic and earth-shattering as the Karen Ann Quinlan, Nancy Beth Cruzan, Terri Schiavo, or Sun Hudson cases. Click the picture below to be taken to the article.


(photo from www.nytimes.com)

The patient—a 58-year-old legal immigrant from Rwanda in a persistent vegetative state after a devastating stroke eight months ago—lies in Georgetown University Medical Center maintained by a surgically placed feeding tube. Because of her immigration status she is not eligible for Medicaid.

On February 19, her court-appointed guardian agreed to the removal of the artificial feedings and the institution of a palliative care plan over the objections of her six adult children (two of whom are United States citizens).

February 24, 2011 | Posted By Liva Jacoby, PhD, MPH


The American Society of Clinical Oncology (ASCO) recently released a policy statement advocating that oncologists engage in candid conversations about prognosis and treatment options with patients suffering from advanced cancer. Published in the January issue of the Journal of Clinical Oncology, the article argues for individualized care entailing realistic conversations not only about prognosis and the risks and benefits of treatments, but also about the patient’s preferences, and his or her perspectives on quality of life. In fact, the authors state that “care intended to enhance patients’ quality of life should be a priority throughout the disease trajectory of advance cancer.” Importantly, the statement makes clear that the option of palliative care should be presented. As the basis for these new recommendations, the authors point to emerging evidence that such conversations take place late in the course of illness or not at all.  

In their discussions, the authors refer to studies showing the benefits of palliative care both for patients and their family caregivers. Yet, a preliminary analysis of over 5000 patient records from ASCO’s Quality Oncology Practice Initiative found that only 45% of patients had been enrolled in hospice care before they passed away and of these, one-third became enrolled within a week of their deaths.

The source for and the tenor of the recommendations are refreshing, not least in light of the recent politicization of end of life care conversations as part of the health care reform debates. The hope is now that oncologists will become trained to have such conversations and that they will persevere in the face of objections. At the end of the day the purpose of the recommendations is to reduce suffering among patients and their loved ones.

Please click the journal cover below to be taken to the full article.

February 15, 2011 | Posted By Sheila Otto, MA, BSN


I have a family member who is 88 yrs of age with acute on chronic problems ranging from diabetes to heart failure to debilitating shingles that have kept her bedbound over the last several weeks. She has gone from a spirited, independent survivor of loss (husband and two children), to someone who reluctantly moved into her daughter’s home and who is now in an ICU to manage her unstable blood sugars, new sepsis, and a blood clot. Her daughter is upset at her worsening condition and holds out hope that she will just “fight” a bit harder, try to do more for herself, and undergo rehab so she can return to her baseline.  When I suggested that maybe her mother was simply exhausted and nearing the end of her life, and that comfort care might be in her best interest, the daughter looked at me as if I had four heads. She responded that she didn’t have anyone else, that her mother was the last of the family.

As a critical care nurse, I saw many families respond this way. I must admit feeling sorry for her, a bit annoyed at what I perceive as her selfishness, and finally a bit cautious that my message was not well received. “This is not about you, but about her,” I wanted to say. Where is it written that each of us has the moral obligation to live out every last second, regardless of cost, pain, or suffering, so that our families can delay the inevitable? Modern medicine has provided multiple solutions to complex problems, yet in the end, we will all die. Why is talk of comfort care, without ICU admission and without pulling out all of the bells and whistles, still regarded as somehow shortchanging the patient (or is it the family)?  In a nation undergoing drastic health care changes which are controversially expensive, will we ever have the backbone to recognize that some resources are just not worth the enormous cost? There, I’ve said it. Note that I did not say my family member was not worth the money, but I did say that providing expensive high tech care for marginal to no benefit was not worth it.  As an ethicist, I know that “benefit” is defined by the patient/family, but as a realist, I also know that limits are needed for the public good. The same political voices that don’t want to expand coverage to all citizens because of the expense are also the first to discount my argument as discriminatory, anti-religious, or anti-individual. Guilty as charged.  At some point, we need to face the reality that care without limits costs all of us.

January 11, 2011 | Posted By Sheila Otto, MA, BSN


The recent decision of the Obama strategists to reverse their inclusion of reimbursement for  the end of life discussions was alarming. I have never understood the “death panel” label  when referencing discussions between physicians and patients, about their values and choices as their lives progress toward that final chapter. What seems to have escaped the public  debate, is that the patient can indeed direct that aggressive care be delivered. Questions about what interventions to use in case of breathing or heart problems for example, have multiple choice answers. The typical living will is set up to allow patients to opt for comfort care in dire circumstances because they were developed to allay the fears of patients who had seen family members and friends undergo painful and prolonged dying, and they didn’t want to have that happen to them.  The Obama team is aware of the political capital it would cost to fight this fight and have chosen to spend it elsewhere…so be it. Our efforts to educate the public should  then be reinvigorated so that patients can once again take the lead and direct their own health care choices.

December 10, 2010 | Posted By Bruce White, DO, JD


Student Jacob M. Appel, M.D. (http://www.jacobmappel.com/) called the Winter Term Bioethics and Law class’ attention to this recent ABC News feature found here [accessed December 6, 2010].

Dan Crews is 27 years old. He has been a quadriplegic since age 3, as the result of a car accident. He cannot breathe without the aid of a ventilator, but he can speak and eat with assistance. He asked to be removed from the life-sustaining breathing machine, but the Wisconsin hospital refused because the psychiatrist service is of the opinion that he is depressed and thus incapable of making the decision to remove the ventilator.

From the story it appears that he has been asking to be removed from the ventilator since May 2009! The patient is reported to have said that “[h]e doubts the hospital will reverse its decision – ever.”From the story it appears that he has been asking to be removed from the ventilator since May 2009! The patient is reported to have said that “[h]e doubts the hospital will reverse its decision – ever.”

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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