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Topic: End of Life Care
August 14, 2012 | Posted By Jane Jankowski, LMSW, MS

Tis the season for family vacations, and like others, our clan tries to incorporate visits with extended family into our routes or final destination. This year, I was able to spend some time with an almost 95 year old grandparent who had some strong views on what she wanted for end of life care. Now, keep in mind, this lady puts most of us to shame with her daily swims, daily reading of the Wall Street Journal, efficient home economics, and speed at calculating Cribbage points. I was struck by the progressive stances held by this wise woman, and was forced to recognize the real risk that her preferences could easily be overlooked in an emergent medical situation.

Sitting in the yoga studio at the assisted living center where she resides, I notice a rather substantial silver bracelet dangling from her left wrist. Unusual for a jewelry minimalist, I asked about it. It is a DNR bracelet. My bioethicist ears perk. Upon closer examination, I see the engraved words, “DO NOT RESCUSITATE” marking the surface.  “Many of us have them,” I am told. Explaining the pervasive concerns shared by her peer group that EMTs will perform CPR no matter what, the message is clear that in this cohort of older adults there is a fear that no matter how well documented and verbalized their preferences may be, these wishes may be overlooked. And this fear is not without merit. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

July 9, 2012 | Posted By Jane Jankowski, LMSW, MS

Historically, palliative care has not been associated with pediatrics. In western societies children are expected to outlive their parents, and we prefer to avoid the sad reality that kids do sometimes die. This social dismay could, in part, explain why the development of palliative care programs for children has lagged behind the adult programs. Not to be confused with Hospice, palliative care is a medical specialty which focuses on symptom management for patients with serious, often life threatening, illnesses. Admission to most Hospice programs requires a six month maximum life expectancy, whereas palliative care may be offered alongside curative treatments to alleviate burdensome side effects and symptoms. In the US, the passage of The Patient Protection and Affordable Care Act of 2010 has improved access to end of life care for children because the legislation permits concurrent coverage of medical treatment and Hospice services. Though a significant step forward, gaps in service may remain because children can live longer with serious illnesses and not meet the six month life expectancy criteria required for admission to a Hospice program. A better prognosis ironically leaves them without access to Hospice’s aggressive symptom management and compassionate, holistic care model. Pediatric palliative care services are emerging to meet the needs of children who have life limiting conditions, but are not expected to die in six months or less. Perhaps the most important feature is that palliative service can be provided alongside treatments for serious illnesses with very good prognoses. 

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 19, 2012 | Posted By Michael Brannigan, PhD

Does the case for terminal sedation actually weaken the case against physician-assisted suicide?

Terminal sedation, more clinically referred to as "palliative sedation," is a legally sanctioned alternative to physician-assisted suicide, a last resort in palliative treatment. It involves inducing and maintaining unconsciousness in a terminally ill patient until the patient dies, and is often accompanied by withholding or withdrawing medical feeding and hydration.

For example, if, in my advanced cancer, I experience intolerable pain, delirium, dyspnea or distress, to alleviate these unmanageable symptoms I let my physician sedate me into unconsciousness until I die. Sort of like undergoing anesthesia before surgery, without waking up.

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, 2012 | Posted By Michael Brannigan, PhD

The year is 2029. After discussing schedules, I've picked early afternoon April 28 as my day. That works for most of us. My wife will have returned from her conference. My sisters can fly in after their dance recital. My brother rescheduled his interviews.

Cousins can drive in from the coast. Some nieces and nephews can't make it, but that's all right. They're busy. Dr. Landis assured us it would be brief. I'll just take the pill the good doc gives me and fall quickly asleep, peacefully, forever. No pain. I'm doing what's right. It is better for all of us.

As we face dying's three dreads — pain, abandonment, helplessness — what is the practical allure of physician-assisted suicide?

July 27, 2011 | Posted By Ricki Lewis, PhD

Like Alvy Singer, Woody Allen’s character in Annie Hall, I’m obsessed with books about the end of humanity, which sometimes involves the end of the world, and sometimes just that of Homo sapiens. Midsummer is a good time to contemplate how bioethics would come into play in such unlikely scenarios, which raise issues of utilitarianism, justice, paternalism, death and dying, and misuse of technology. 

I prefer the human-wrought disasters to the more celestial imagined ends, such as the film “Asteroid”, which was so bad that my husband dubbed it “Hemorrhoid”. My favorite, after many years of wallowing in these depressing depictions, is "Swan Song," by Robert McCammon, in which survivors of a nuclear holocaust stagger about, drinking wolf’s blood to avert starvation. I can still picture, practically smell, when 6-year-old Swan picks the first apple to grow after a nuclear winter. Another favorite is “The Road,” in which Cormac McCarthy recounts the journey of a father and son as they traverse post-apocalyptic terrain, searching for others. What led to the destruction of society? How does it rebuild? Is a messiah, like Swan, essential?

I also savor novels that alter the human life cycle, tweaking age cohorts. “The Children of Men,” an excellent book by P.D. James and a terrible film, envisions a world with no more children. Time ticks down to the inevitable end of our species, with the drama centering around a pregnant woman. That’s a scenario that would welcome reproductive cloning!

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.

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?

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.