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Topic: End of Life Care
November 13, 2014 | Posted By Michael Brannigan, PhD

Reminders of our finitude always lurk close by, like Ezekiel Emanuel's article in last month's Atlantic, "Why I Hope to Die at 75." The head of the Clinical Bioethics Department at the National Institutes of Health gives reasons for not living beyond 75: inevitable decline, disability, incapacity, and diminishment of "creativity, originality, and productivity." According to Emanuel, we wish to be remembered for our good years, prior to decline.

There are grains of truth here. Many of us "die" well before we are officially declared dead. I've seen patients kept alive for far too long in permanent vegetative states, while family dynamics, emotions, finances and scarce medical resources are depleted. We pay a high price for medical "progress." I also know thriving, vibrant elderly, themselves significantly disabled and incapacitated.

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.

November 6, 2014 | Posted By Bruce D. White, DO, JD

The cover story of the October 27, 2014, issue of PEOPLE Magazine featured Brittany Maynard, a 29-year-old Oregon woman with terminal brain cancer. In the article, Ms. Maynard announced that she would end her life on November 1, 2014, on her own terms, availing herself of the physician-assisted suicide option under the 1997 OregonDeath With Dignity Act (DWDA). As planned, and according to her own schedule and timetable, she died peacefully at home – surrounded by family and friends – on Saturday, November 1. She had signaled earlier in the week that she might delay taking her own life, but in the end, it occurred as she originally planned.

In electing assisted suicide, Ms. Maynard said, “I’m choosing to put myself through less emotional and physical pain.” She continued, “I don’t want to die, but I’m dying. My cancer is going to kill me, and it’s a terrible, terrible way to die. … When I look at both options I have to die [dying from the cancer versus dying from an overdose], I feel this [a fatal dose] is far more humane.” But rethinking the possibilities after developing a rather extensive plan in orchestrating one’s death with a terminal illness is not that unusual either. Roughly 40% of those who obtain the lethal doses of medicine under Oregon’s DWDA in the end die not from suicide but disease. According to an article in The New Atlantis, written to report a 10-year experience under the DWDA, author Courtney Campbell wrote, “In ten years, 541 Oregon residents have received lethal prescriptions to end their lives; of this number, 341 patients actually ingested the drugs.”

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.

September 4, 2014 | Posted By Luke Gelinas, PhD

There has been a good bit of debate lately in bioethics circles over the concept and proper definition of death.   The disagreement is between those who think that the cessation of brain activity or ‘brain-death’ is sufficient for death, on the one hand, and those who think that brain-dead patients whose circulatory systems continue to function are still alive, on the other.  Consider, for example, the recent tragic case of Jahi McMath.  McMath suffered complications from a surgery to correct sleep apnea which resulted in cardiac arrest and her being placed on a ventilator.  Shortly after physicians at Oakland Children’s Hospital pronounced her brain-dead and so legally dead.  Her family, however, disagreed, and appealed to the courts for Jahi to be maintained via mechanical ventilation and PEG tube.

Although Jahi’s family disagrees with the claim that she is brain-dead (insisting that she is merely ‘brain-damaged’), suppose the Oakland physicians are correct in their diagnosis of brain death.  Nonetheless, even after the pronouncement of brain-death Jahi’s body continued to exhibit the sort of homeodynamic equilibrium—at least for the time being, and with assistance from mechanical ventilation and other life-sustaining interventions—characteristic of living organisms.  It was warm to the touch; her heart continued to pump blood through her veins; and so on.  Indeed the bodies of brain dead patients have in some cases remained functional for weeks and even months, performing such surprising feats as undergoing puberty and even gestating fetuses. This has led certain physicians and philosophers to question whether brain death is really sufficient for death.  Patients who are truly dead, after all, could not be warm to the touch or gestate fetuses.  Could they?  

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. 

May 22, 2014 | Posted By Jane Jankowski, DPS

The seventh annual National Healthcare Decisions Day (NHDD) was held on April 16th of this year, and events at national, state and local levels were held to educate people about the importance of advance care planning and encourage participants to complete advance directives. Providing resources and information that drives home the message about how important it is to let others know one’s preferences for healthcare and end of life care is intended to promote conversation and documentation of these wishes which are then implemented when the individual is no longer able to express preferences for themselves. But does it do enough to generate interest in those who prefer to avoid such unpleasantries?

Repeated studies show that advance directive completion rates are low in the US. People simply do not like to talk about end of life, and it is not clear that the NHDD, however well intended, is making the topic any more palatable. Designating a day to recognize the importance of advance directives is an important start, and the materials are often excellent. Five wishes, for example, gives a carefully crafted set of questions to help people thoughtfully consider what matters most to them when it comes to medical intervention, particularly in the end of life context. Still, this only works if people come to the table for the conversation.

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.

March 10, 2014 | Posted By Jane Jankowski, LMSW, MS

As a clinical ethicist, many of the requests for assistance that come my way have to do with advance directives, either the lack of any documented wishes, incomplete or unfamiliar forms, or otherwise confusing messages about what a patient truly wants when it comes to life sustaining medical treatment. Too often, my help is needed when the patient is no longer able to tell others what he or she wants and does not want. On one such call, a group of compassionate nurses and I sifted through a charts to see what we could learn about a particular patient’s known wishes. In the course of our conversation, a nurse asked me if I had heard about LaCrosse, Wisconsin where 98% of the town’s population has advance directives. After giving me a quick summary between her own patient charting, delivering meds, and coordinating a pending admission, she printed the article. For anyone who missed it (like me) the link is here: LaCrosse Wisconsin on NPR.

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.

August 20, 2013 | Posted By Wayne Shelton, PhD

In my work as a clinical ethics consultant, I have seen many situations where dying patients or their surrogates make decisions that cause considerable concern and moral stress to physicians, and particularly to nurses who are continually at the patient’s bedside. In an era where respect for patient autonomy is the paramount ethical value, we are obligated to be respectful of these preferences and decisions. But what about the cases where those preferences and decisions lead to procedures and treatments at the end of life which are entirely contrary to sound medical advice? Should physicians follow these directives even if this means that the patient will suffer needlessly and the physician will be performing painful, futile treatment?

Ethics consultations are frequently called on to address issues at the end of life.  One of the most pressing issues involves dying patients for whom CPR would be medically inappropriate. The patient or surrogate will not give consent for a DNR order, insists on remaining full code and that “everything be done” in spite of a prognosis of imminent death.  A case I read about a few years ago illustrates this concern.

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.

May 30, 2013 | Posted By Marleen Eijkholt, PhD

One week ago, the state of Vermont passed legislation allowing Physician Assisted Suicide (PAS) in its ‘Patient Choice at End of Life’ Bill. This Bill will protect physicians from criminal liability for prescribing a medication that will hasten a patient’s death, under certain conditions and given certain safeguards. The legislative regime is relatively clear, and its comprehensible provisions can be applauded. Still some ambiguity exists overall about the distinction between PAS and euthanasia, as evidenced by the following headline: ‘Vermont Assisted Suicide Bill: Vermont Gives Euthanasia the Green Light’. The legislation itself does not necessarily do a service to clarify these terms, in its reference to active euthanasia. In this blog post, I seek to clarify some of the legislative regime in Vermont and clarify some terminology around PAS and euthanasia. 

Vermont is the third State that has legally permitted PAS, and is the first one to do so by law directly. Oregon and Washington legalized PAS respectively in 1994 (confirmed in 2006) and 2008 after referenda. Montana allowed PAS by a court judgment in 2009, but no Bill has been enacted yet. Vermont’s Bill was crafted with the Oregon legislation in mind. Its current safeguards revolve around record keeping by the physician, its requirements that a patient needs to suffer a terminal illness and have less than six months to live, as well its requirements for a the written statement of a patient (next to two oral ones), and a concurring opinion from a second physician. These safeguards were a compromise to facilitate and speed up the process of the Bill. In 2016 these safeguards will be replaced, and PAS will be governed by professional practice standards, like in other areas of medicine (Provision 5292).    

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.

April 23, 2013 | Posted By Marleen Eijkholt, PhD

Medical situations can instantly change. This can be for the better or for the worse:  A patient who consistently refused to eat, now suddenly decides to eat. A patient who is delirious or manic threatens a staff member at 11:50, but subsequently seems rational and reasonable when we arrive in his room 15 minutes later. A stroke patient who does not communicate or respond, and who is likely to develop into a permanent vegetative state (PVS), perks up, talks and leaves. A patient, who is on the mend, develops a fever, requires a rapid response and dies. 

The ethical issues, similarly, change instantly in these situations. It requires me, as a new clinical ethics, to constantly redefine my perspectives. Where we plan to discuss placement of a feeding tube, the patient’s mood alteration resolves issues around placement and resolves the ethical questions. Where we address concerns around a safe discharge, we find out that the patient’s mood changes at 12 o' clock, and awareness of this time frame allows for a safe discharge. Where have family meetings to discuss quality of life in a PVS, this discussion is no longer necessary as the patient can be discharged.

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.

April 8, 2013 | Posted By Jane Jankowski, LMSW, MS

Gamete retrieval after death or irreversible coma ought not to be counted among the many acceptable practices of assisted reproductive technology (ART) because the donor patient’s consent cannot be reasonably verified and there is no possibility to participate in childrearing activities. Although it is possible a case could arise where the patient leaves clear and convincing evidence of the wish to have gametes harvested following a devastating loss of brain function, I will argue that advance directives are still inadequate and decisions will necessarily default to family members who may have complicated feelings and agendas. In terms of intent, the absence of any ability to participate in childrearing should be taken into consideration when evaluating decisions about harvesting gametes from comatose or deceased patients, again placing the decision with the family members who must accept and accommodate these preferences.  Allowing such a practice affirms the irrelevance of participating in rearing one’s offspring, and this may be lead to a slippery slope of diminishing the importance of responsibility in childrearing activities. 

Advance directives provide some insight into what a patient may have wanted in terms of life sustaining treatment and perhaps allocation of organs and/or gametes. To harvest gametes from an individual who will not be able to affirm their intent to serve as donors for a partner may be morally uncomfortable for physicians. Performing a procedure to extend the reproductive liberty of a patient who will never have a role in any resulting child’s life may understandably challenge a provider’s beliefs about how far medicine ought to go in honoring patient or family requests. The role of surrogate decision makers for a patient who lacks capacity is to honor the spirit of advance directives, if not the exact specifications.  Honoring the autonomy of a patient, however; need not extend to the realm of unfulfilled life goals. A patient who stated they wished to donate organs would still have such a request reviewed and consent is sought from the family members in nearly all cases.  Beyond the consideration due the patient, we may also have an obligation to If  we trust the patient’s intent and permission to retrieve gametes after loss of consciousness, can we fully trust the recipients motives are not influenced by grief or secondary gain, such as disability benefit or estate distribution?

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.

March 25, 2013 | Posted By Marleen Eijkhjolt, PhD

This blog post solicits for your opinion, so please stick with me. 

There are two prominent sad realities in my clinical ethics fellowship. The first is that many cases deal with end-of-life issues. The second is that there are many ‘lonely’ patients, who often die in the hospital ‘alone’. The two issues combined tend to raise some unfortunate but fascinating clinical PELSI (Policy, Ethics, Legal and Social Issues). One such issue is: Who should make medical decisions at a patient’s end-of-life when this patient lacks capacity and there is no surrogate? 

In the State of New York, we have the Family Health Care Decisions Act (FHCDA) that governs many of these issues, including end-of-life decisions in absence of a surrogate. (I will explain the legislative scheme below) However, this legislation does not solve all problems, as the written word leaves leeway for different interpretations and practices. One of these problems is related to decisions to withhold or withdraw life-sustaining treatment, and can be phrased as: Who should be the second, independent concurring physician in such decisions, in cases where the patient lacks capacity and there is no surrogate?

Let me explain. 

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.

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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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