Tag: proxy

Bioethics Blogs

“She Can’t Help The Choices She Makes”

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By Madeleine Cardona

I will never forget the day my mother got diagnosed. I could swear that just yesterday I was thirteen years old waiting anxiously to be called in from the waiting room of some fancy New York State doctor’s office. I was young, but I had some idea of what was going on. I knew my parents and I were there because they were going through a divorce and fighting for custody of me. What I did not know was that we were about to endure a court-ordered psychiatric evaluation and that the results were going to change my life forever.

“Madeleine, your mom is very sick,” the psychiatrist attempted to explain to me. I did not understand. I did not know a sick person could look perfectly healthy. “It’s not a physical sickness, it’s in her head. She has a mental disorder called Paranoid Schizophrenia.” She went on using big words to explain how my mother’s brain “wasn’t like other people’s brains.” I sat there listening closely, hanging on every word the woman was saying to me. “She can’t help the choices that she makes, it’s not her fault that she is the way that she is. She needs help.” Every day since that day in the doctor’s office, that remark replays in my head over and over. “She can’t help the choices she makes.”

That is what gave me the most trouble. I sat around for years and years watching the choices that my mother was making, unable to intervene.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

What can neuroethicists learn from public attitudes about moral bioenhancement?

By Peter Reiner

Dr. Reiner is Professor and co-founder of the National Core for Neuroethics at the University of British Columbia where he is a member of the Department of Psychiatry and the Centre for Brain Health. Dr. Reiner began his research career studying the cellular and molecular physiology of the brain, with particular interests in the neurobiology of behavioural states and the molecular underpinnings of neurodegenerative disease. In 1998, Dr. Reiner became President and CEO of Active Pass Pharmaceuticals, a drug discovery company that he founded to tackle the scourge of Alzheimer’s disease. Upon returning to academic life in 2004, Dr. Reiner refocused his scholarly work in the area of neuroethics, co-founding the National Core for Neuroethics with Dr. Judy Illes in 2007. Dr. Reiner has championed quantitative analysis of public attitudes towards diverse issues in neuroethics including the propriety of cognitive and moral enhancement, the contours of autonomy in the real world, and the neuroethical implications of Technologies of the Extended Mind.

Moral behavior is fundamental to human society. Wherever one goes on the planet, one finds a set of norms that guide behavior, and following these norms is a basic tenet of peaceful coexistence with one’s fellow humans. Despite abundant evidence that the arc of human history trends towards decreased violence (Pinker, 2011), a proxy for moral behavior, scholars have suggested that society might be better off were we to enhance our moral capacities, and that using biological methods to do so is warranted (Douglas, 2008; Persson and Savulescu, 2008). This has engendered a vigorous debate that goes beyond the usual divide between bioconservatives and technoprogressives (Reiner, 2013a); in this arena, even ardent proponents of enhancement technologies have registered dissent (Harris, 2010).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Few Americans Plan For End-of-Life Decisions, Even If They Are Sick

Michael S. Dauber, MA, GBI Visiting Scholar

Many moral dilemmas faced by clinicians, patients, and their families arise when individuals have not made plans for the end of their lives or discussed their wishes with their loved ones. To prevent and mitigate these issues, ethicists have suggested for decades that individuals should complete documents such as advanced directives like living wills (legal documents that indicate one’s wishes for interventions like intubation and cardiopulmonary resuscitation (CPR)), and to name a healthcare proxy (an individual to make decisions on one’s behalf in the event one becomes unable). Such measures tend to make it easier for individuals to address moral dilemmas in practice and to determine the ethically appropriate surrogate decision maker for a patient.

According to a recent study published in Health Affairs, few Americans have taken either of these measures. Researchers compiled results from over 150 studies of end-of-life planning measures and determined that only 36.7 percent of those surveyed had completed some sort of advanced directive, with 29.3 percent of those individuals completing living wills and 33 percent empowering a healthcare proxy. The study also found that 42 percent of individuals aged 65 or older had completed some sort of advanced directive, as opposed to 32 percent of individuals younger than 65.

There are several reasons why individuals may be hesitant to complete healthcare proxies. Many young people may feel they can put off decisions about care at the end of their lives because such matters are comparatively unlikely to occur in the short term.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Advance Care Planning and End of Life (ACPEL) Conference

The program for the 2017 Advance Care Planning and End of Life (ACPEL) Conference in Banff is now available.


Pre-Conference Sessions (Part 1)
Session 1: CRIO 
1. How do people with disabilities perceive advance care planning – Robin Gray, University of Calgary


2. Differences in survey methodology of two Advance Care Planning survey polls conducted in Alberta, Canada – Sunita Ghosh, Alberta Health Services-CancerControl


3. Efficacy of Advance Care Planning and Goals of Care Designations Discussions: A Randomized Controlled Trial and Video Intervention – Maureen Douglas, University of Alberta
  
4. Identification of indicators to monitor successful implementation of Advance Care Planning policies: a modified Delphi study – Patricia Biondo, University of Calgary

5. The economics of advance care planning, Konrad Fassbender, University of Alberta; Covenant Health

Session 2: Health Care Consent, Advance Care Planning, and Goals of Care: The Challenge to Get It Right in Ontario

Health Care Consent, Advance Care Planning, and Goals of Care: The Challenge to Get It Right in Ontario – Tara Walton, Ontario Palliative Care Network Secretariat

Session 3: How to Invite Clinicians to Initiate ACP

1. How to Invite Clinicians to Initiate ACP to Residents, Patients, and Family Carers? – Luc Deliens  
  
2. Development of a complex intervention to support the initiation of advance care planning by general practitioners in patients at risk of deteriorating or dying: a phase 0-1 study – Aline De Vleminck, Free University of Brussels & Ghent University

Pre-Conference Sessions (Part 2)

Session 1: Faith Based Workshop

Inviting the voice of Spirituality within the conversation of Advanced Care Planning – Thomas Butler, Bon Secours Health System Inc.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

He’s NOT a Ward of the State: Legal Significance of Words in Clinical Setting

As a lawyer by training and working as a non-lawyer in a clinical setting, I hear legal words of art tossed around without knowledge of their meaning.  In many cases, wrong terminology is the least of the healthcare team’s concerns and it is not an issue.  However, there are times when correct understanding of the legal significance of a phrase resolves an ethical dilemma all on its own.  

The phrase I have been hearing lately in the clinical setting is “ward of the state.”  This phrase has significance for the health care team because it determines who has authority to make decisions for a patient who lacks capacity, such as patients with development disabilities (“DD”). The legal meaning of “ward of the state” means that the patient has a public legal guardian (as opposed to a family member or friend as guardian). For those who do not understand its meaning, those using the term are usually referring to someone who is receiving health care services from a state agency or living in a group home.  The key misunderstanding is that receiving state services does not automatically deem one a “ward of the state” in the eyes of the law. A patient could be receiving services from Office for People with Developmental Disabilities without having a legal guardian. According to the New York Health Care Decisions Act, a 17-A guardian is the one who makes decisions for anyone with an intellectual or developmental disability, including health care decisions.  This is a legal process. It is common for a facility with patients with disabilities to begin a guardianship process for their residents who lack capacity as part of their admission process, but this is not always the case.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

He’s NOT a Ward of the State: Legal Significance of Words in Clinical Setting

As a lawyer by training and working as a non-lawyer in a clinical setting, I hear legal words of art tossed around without knowledge of their meaning.  In many cases, wrong terminology is the least of the healthcare team’s concerns and it is not an issue.  However, there are times when correct understanding of the legal significance of a phrase resolves an ethical dilemma all on its own.  

The phrase I have been hearing lately in the clinical setting is “ward of the state.”  This phrase has significance for the health care team because it determines who has authority to make decisions for a patient who lacks capacity, such as patients with development disabilities (“DD”). The legal meaning of “ward of the state” means that the patient has a public legal guardian (as opposed to a family member or friend as guardian). For those who do not understand its meaning, those using the term are usually referring to someone who is receiving health care services from a state agency or living in a group home.  The key misunderstanding is that receiving state services does not automatically deem one a “ward of the state” in the eyes of the law. A patient could be receiving services from Office for People with Developmental Disabilities without having a legal guardian. According to the New York Health Care Decisions Act, a 17-A guardian is the one who makes decisions for anyone with an intellectual or developmental disability, including health care decisions.  This is a legal process. It is common for a facility with patients with disabilities to begin a guardianship process for their residents who lack capacity as part of their admission process, but this is not always the case.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Cross Post: Our political beliefs predict how we feel about climate change

Written by Prof Neil Levy

Originally published on The Conversation

The man who called global warming a fabrication invented by the Chinese to make US manufacturing less competitive is now president-elect of the US. His followers expect him to withdraw the US from the Paris climate change agreement and eliminate the environmental regulations introduced by his predecessor.

But recently, Donald Trump has shown a few signs that he might be open to being convinced that climate change is a real problem requiring action. In discussion with journalists at the New York Times, he expressed the view that there is “some connectivity” between human activity and climate change, adding that he’s keeping an open mind about it.

Will his commitments on climate change go the way of his vow to prosecute Hillary Clinton? I doubt it. I suspect that in the end, the words of his close advisers will be more persuasive than those of climate scientists. He will retain only a figleaf of regulation, at best.

Trump often boasts of his intelligence. Many people might take his scepticism about climate change as evidence against his inflated sense of his own abilities. I don’t think it is. I have no high opinion of Trump’s intelligence, but scepticism about climate change is not the result of a lack of mental capacity or of rationality. The minds of sceptics are not working any less well than those who accept the consensus. They are more victims of bad luck than of bad thinking.

Left-right divide

In fact, there is little relationship between intelligence and knowledge and beliefs on climate change (or other hot button issues, such as evolution).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Means to an End

According to a recent survey of nearly 8,000 Americans, over two-thirds do not have an Advance Directive, Living Will, Health Care Proxy or similar document. They don’t because they don’t know about them or because they assume their families already know their end-of-life wishes. Unfortunately, the few studies that have looked at the accuracy of family decision-making have also found that most health care proxies might as well just guess what their loved one wants. Surrogate accuracy is only slightly above chance, with rates of accuracy running about 50-65%. This is largely because too many people avoid conversations about end-of-life planning. Talking about death is difficult even under the best of circumstances, let alone our own end-of-life wishes. We all expect to live for decades more. But life is unpredictable, and the only thing that is certain is that none of us get out of it alive. While it might be difficult to contemplate our own mortality, we owe it to those that we love to make sure that they know what we want when the inevitable comes.

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

“Notes on a Balinese Cockfight” and Donald Trump by Veronica Davidov

Shortly after the election, I taught “Notes on a Balinese Cockfight” to my Anthropological Theory class, as I always do, at that point in the semester. By then we had covered “old ideas” – anthropologists who saw societies as bodies that successfully regulated themselves into homeostasis, cultures as cauldrons that take all that is natural and transform it into all that is social. Then, in the timeline of the history of anthropological thought, we consider the idea of culture as a manuscript, a palimpsest of layered stories, endlessly rich in meaning – stories that work both like horcruxes, where the soul of the culture is encoded, and as mirrors, reflecting how life is lived back to the ones that live it.

“The Balinese Cockfight” is, as every anthropologist knows, a classic article written in 1972 by Clifford Geertz, who observed cockfighting during his fieldwork in Indonesia. The cockfights are illegal but widespread, with cocks – roosters – serving as proxies for powerful men and their status competition. Geertz wrote that “the cockfight is the story the Balinese tell themselves about themselves.” When I teach this article, I always start the class by saying out loud what I’ve learned students are wondering and giggling about – I tell them, “yes, the whole article is basically one protracted dirty joke. Yes, he writes about cocks exactly for the reason you think. He even notes that the wordplay where a cock is both a rooster and a penis exists in Balinese just as it does in English.”

Intellectuals have an interesting critical relationship with archetypes, especially when they appear as instances of synecdoche – they are such concentrated semiotic clusters that when they are intentionally deployed in fiction, we are taught to read them as allegory.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Means to an End December 16, 2016 According to a recent survey of nearly 8,000 Americans, ov…

December 16, 2016

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

Means to an End

My mother passed away last Wednesday. She was found unresponsive on the floor of her kitchen early Tuesday, in severe septic shock from untreated peritonitis and a perforated intestine. Although she was admitted to the intensive care unit and given aggressive medical treatment, she never regained consciousness. Because of her age and her poor health – exacerbated by the fact that she had ignored the signs and symptoms of sepsis for nearly a month – her body was simply not strong enough to fight the infection. Less than thirty-six hours after she was admitted to the hospital, we let her peacefully and painlessly slip away.

I’m telling you this story not to garner sympathy, but rather to share with you a lesson that I learned. Because my mother was unmarried and because she was unable to consent for treatment, according to the laws of the state in which she lived I was the de facto decision maker about her medical care. This is quite common. Unless otherwise indicated, family members – usually the spouse, adult children, adult siblings and parents, in that order – are assumed to be the surrogate decision makers for a patient who cannot provide consent.

The decisions that I had to make, most of which were made at 2:30 in the morning after chatting briefly with the clinical care team, included the decision to make my mother DNR (‘do not resuscitate’) after her heart stopped for the third time.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.