Topic: Advance Directives
January 7, 2016 | Posted By Wayne Shelton, PhD

Alzheimer’s is a progressive disease that over time robs the person of their selfhood. Eventually the advanced Alzheimer’s patient lives in a world of discrete, fleeting moments. The former self is obliterated and all of the personal connections to former loved ones are forever lost. The current self or the “now-self” is self-contained in each passing moment so there are as many selves as there are moments. From the onset of diagnosis a patient may live for as few as 3 years to as many as 10 or more. Much depends on the age of the patient and the comorbid conditions. But it is important to make clear: Alzheimer’s is a terminal disease for which there is no effective treatment to abate the progressive symptoms or to prevent or slow the mental and physical dying process. Though death does not occur until the whole human organism ceases to function, death must also, at least partly, be understood as the gradual dying of that unique personal self. This includes the higher brain functions that allow humans to be their uniquely personal selves, with personalities, habits, loves, careers, causes, values, characters, and so on. When these aspects of the patient begin to wane, there begins the gradual loss of “critical interests”—those personal aspects of one’s life one controls as an autonomous, social human being and moral agent.

Yet, the loss of critical interests or what we might call rational selfhood, do not necessarily entail the simultaneous loss of “experiential interests” that are connected to purely biological functions.  The Alzheimer’s patient may continue to have a robust interest in food, drink, music, social interaction (even without recognizing the person with whom she is interacting), sex, and so on. Patients with robust experiential interests but no critical interests may eat hearty meals and be social in very new ways, sometimes with intimacy, with people they never knew before. But at some point in the course of the disease, even those experiential interests begin to wane and eventually disappear. At that point, patients with Alzheimer’s no longer are able to feed themselves or care for themselves in any way. In fact they may be totally puzzled having food in their mouths, not knowing how to chew and swallow, or having to go the bathroom. They live in a world where they cannot comprehend what is happening to bodies. For many, the possibility of losing all of one’s critical interests as a human being and being left with only experiential interests is terrifying. So how does one plan one’s own medical care during this time?

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.

December 8, 2015 | Posted By Bruce White, DO, JD

On Friday, October 31, 2015, the chief medical officer of the Centers for Medicare and Medicaid Services announced a final rule which details how Medicare will pay practitioners to have conversations with patients about how they would like to be cared for at the end of life. Under the regulation, the patient is not obliged to have these conversations after a terminal diagnosis is made, or shortly before death is anticipated; the conversations may take place at any time, even before the patient becomes ill. The conversation may include discussions about life-sustaining treatments before they may be necessary, and about advance directives and the identification and appointment of a legally authorized representative to participate in the shared decision making progress if the patient were to lose decision making capacity. The rule, which will take effect in January 2016, creates new codes for reimbursement under the Medicare physician fee schedule.

It may seem remarkable that there should be any question about reimbursement for these often-time-sensitive, patient-directed conversations or discussions at all. But because Medicare payments have traditionally been tied to physicians completing and documenting finite “tasks” or “procedures,” these conversations have been “bundled” with other inclusive duties or responsibilities (such as taking a history or performing a physical or developing a treatment plan). The idea that Medicare should pay specifically for the service comes from the belief that if physicians received fairer compensation for providing the conversation and discussion, they would be better incentivized to comply. (Of course, this may or may not be the case, since many physicians clearly have been doing this all along as evidenced by the increased referrals to palliative care and hospice providers and services over the years.) But from 2013 Medicare data about terminally ill cancer patients, only about 47% of these patients receive hospice care, and the average length of stay in hospice is about 17 days. The statistics vary greatly from state to state with the better hospice and end of life care being provided in the Pacific Northwest and the worst in Alaska, Florida, North Dakota, and New York.

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.

October 9, 2015 | Posted By Valerye Milleson, PhD

“People need to be made more aware of the need to work at learning how to live because life is so quick and sometimes it goes away too quickly.” – Andy Warhol

This past weekend was the last one for The Late Drawings of Andy Warhol: 1973-1987 exhibit at The Hyde Collection Museum in Glen Falls, and I almost didn’t go to it. I told myself there were far too many other things to do: the stack of recent journal articles I’ve been meaning to get to; student assignments that are in need of grading; the upcoming presentations for which I haven’t even begun putting together powerpoints; the apartment that, despite ongoing efforts, never seems to be completely clean; the piles of unwashed or unfolded laundry; and so on. In terms of triaging my limited time, a two-hour round trip trek to see a handful of sketches hardly seemed sufficiently important.

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 28, 2015 | Posted By Claire Horner, JD, MA

As Jane Jankowski, DPS, LMSW discussed in her last AMBI blog posted on June 16, 2015, the proposed rule to reimburse providers for conversations with patients about advance care planning takes a positive step toward educating patients on end-of-life medical considerations by incentivizing doctors to take the time to address these issues in the clinical setting.  Assuming that such reimbursements depend only on raising the topic of advance care planning with patients and not on the content of a patient’s choices (such as whether or not a patient chooses to forego treatment), encouraging health care providers to discuss health care decision making in advance with patients can go a long way to support patient autonomy and provide helpful guidance to surrogate decision-makers when a patient lacks capacity.  Doctors often cite lack of time as a reason why they do not address advance directives in the clinical setting, but this rule would compensate doctors for their time, allowing them more flexibility in allocating time to address these issues.  However, the proposed rule does nothing to ensure that the providers having these conversations are equipped with the proper tools and training to do so.

Advance directives, although they address the provision of medical treatments, are legal documents that can be complex and far-reaching, and therefore are not necessarily self-explanatory to patients or providers.  Many states offer a statutory form advance directive as an example, but all too often these forms may be merely printed by a provider and given to patients to sign without sufficient explanation.  These forms vary in their scope, but some sample living wills, such as forms from West Virginia and South Carolina, are little more than a declaration that no life-sustaining treatments should be provided.  Other states, such asMichigan and Massachusetts, have no law giving legal recognition to living wills at all.  It is possible that patients may be given forms such as these and not understand that they have the option to declare that they wish to receive particular life-sustaining treatments if they are terminally ill.  It is also possible that patients who do not want to limit treatment will decline to sign any advance directive at all, believing that such documents serve only to support a decision to forego treatment at the end of life, and not a decision to receive some or all interventions.  In such situations, merely starting the conversation may not be enough to help patients effectively articulate their wishes, whatever those wishes may be.

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 16, 2015 | Posted By Jane Jankowski, DPS, LMSW

Last week the Centers for Medicaid and Medicare announced a proposal that would provide Medicare reimbursement for providers to spend time with patients discussing advance care planning. Though some have argued that this process will carry an inherent bias toward non-treatment, the purpose of such conversations is to seek direction from patients about preferences, values, and expectations should they lose the ability to express these things for themselves. While many persons who articulate their treatment preferences indicate the desire to forego aggressive intervention, this is hardly unanimous. There are plenty of folks who want all possible treatment offered to sustain life. The point of having discussions with healthcare providers is to determine what any given individual prefers.

Acute care providers have long been left with challenging dilemmas when patients are unable to communicate their healthcare goals, and the default is to treat and often treat aggressively. When a patient arrives to an acute care setting with documentation of preferences for treatment, interventions and goals can be set based on the individual’s prior wishes – whether this is to sustain life using any possible technology, or to allow a natural, uninterrupted dying process. The default of treating when there is any doubt will not change, but the opportunities for patients to discuss and document their own preferences will be enhanced with this legislative support. Providing muscle in the form of funding for these important conversations will only encourage more of a good thing. 

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 13, 2015 | Posted By Wayne Shelton, PhD

There has been a lot of talk recently about end of life care and how people die in America as well as important recommendations made on how effective end of life care should be provided. But there is still much work to be done. Because the nature of this work cannot be resolved by more laboratory experimentation or investment in and mastery of technology, the kind of challenge presented to our healthcare system is actually more daunting, since it relates to how physicians’ communicate with their patients. The precise question I am raising with respect to the kind of end of life care patients receive at the end of their lives is this: Do physicians follow the golden rule? Do they give their patients the chance to have the same kind death they would want for themselves and for their families? Sadly, the answer is too often, no, they often do not follow the golden rule.

A recent study from Stanford University “found most physicians surveyed would choose a do-not-resuscitate or “no code” status for themselves if they were terminally ill even though they tend to pursue aggressive, life-prolonging treatment for patients facing the same prognosis.” At the same time, at 2013 JAMA study found that most seniors want to die at home or in the home of someone they know and avoid burdensome end of life treatments, yet only about 1 in 3, or less, actually do. In fact, about 1 in 3 people over 65 die still die in hospitals or ICU’s after having receiving aggressive, often burdensome, medical interventions. Of those that are moved to hospice care, 1 in 3 are there for less than three days before dying. So it’s safe to say that, though end of life care has improved for the past three decades, there are still many elderly people receiving overly aggressive, sometimes unwanted treatments, at the end of life. What are the barriers to elderly patients receiving the kind of end of life care they say they want? Let me go over two obvious ones.

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.

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 14, 2013 | Posted By Wayne Shelton, PhD

A story last week from Bakersfield, California received an enormous amount of attention and seemed to capture the public’s imagination. The story was in both the print and electronic media as though a great injustice has been unearthed.  People were outraged that no action was taken to provide cardiopulmonary resuscitation (CPR) on an 87 year-old woman who had arrested in an independent living facility where she was a resident. The story was the rage on Facebook and other social media—people weighing in with their concerns, which again was mostly outrage and disbelief that something like this could have happened. Now that we are a week or so out from when this event happened, I thought it might be worth thinking about what happened in this story and see what lessons we can learn.

The story begins when Lorraine Bayless, the 87 year-old resident of Glendale Gardens, a Bakersfield independent living facility, collapsed and someone, presumably an employee, called 911. Apparently the employee called to report this emergency and was expecting the paramedics to respond quickly. The dispatch operator, realizing the importance of a quick response, admonished the caller to begin CPR herself, before the paramedics arrived. The caller, who identified herself as a nurse, told the dispatcher that she was not permitted by the facility to provide CPR for patients. Glendale Gardens is an independent living facility that says by law they are "not licensed to provide medical care to any of its residents." So in the cool light of calm reflection, did something wrong take place?

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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