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Topic: Advance Directives
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.

March 12, 2013 | Posted By Jane Jankowski, LMSW, MS

Thomas Gray first coined the phrase “ignorance is bliss,” in his Ode on a Distant Prospect of Eaton College, but is that truly the case when it comes to the millions of people who are diagnosed with some form of dementia related cognitive impairment? According the a recent article in the Wall Street Journal, early dementia testing may offer many benefits to patients and families who will face long term care needs as the disease progresses.  The article notes that early screening is only one step in a continuum of care and planning. Once a diagnosis is made, do the benefits of knowledge outweigh the burdens for the patient?

When it comes to care planning, the benefits of early detection of a progressive dementia likely do outweigh the burdens, for both patient and family. Depending on the patient’s awareness of the cognitive changes, the individual may be able to indicate wishes for treatment and complete advance directives. Family members can discuss residential options and consider how supervision and support will be provided before they face a crisis. Though many strains may be minimized with early planning, it may be difficult to interpret the patient’s genuine preferences at later stages, and just how much weight should later wishes be given? 

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 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.

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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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