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Let’s Talk About Death: Millennials and Advance Directives

Let’s Talk About Death: Millennials and Advance Directives

Sarah Riad, College of Nursing and Health Sciences, University of Massachusetts Boston

Melissa Hickey, School of Nursing, Avila University 

Kyle Edwards, Uehiro Centre for Practical Ethics, University of Oxford

As advances in medical technology have greatly increased our ability to extend life, the conversation on end-of-life care ethics has become exceedingly complex. With greater options both to end life early and extend it artificially, advance directives have arisen in an effort to preserve patient autonomy in situations in which he or she becomes incapable of making a medical decision. However, most people—especially young adults—do not think to plan for such moments of incapacity and the potentiality of an untimely death. With a youthful sense of invincibility comes a lack of foresight that prevents us from confronting these issues. The reality is that unexpected events happen. When they do, it is often very difficult to imagine what a person would have wanted and make medical decisions accordingly on his or her behalf. In this post, we suggest both a transition from action-based to value-based advance directives and an interactive website that would make the contemplation of these issues and the construction of a value-based advance directive appealing to and accessible for Millennials, the 20-somethings of today. Read More »Let’s Talk About Death: Millennials and Advance Directives

Safety First? How the Current Drug Approval System Lets Some Patients Down

Andrew Culliford, whose story is featured in the Daily Mail, is one of the estimated 7 in 100,000 people living with Motor Neuron disease, a progressive degenerative disease which attacks muscles, leaving those affected eventually unable even to breathe unassisted. For Andrew, a young father who has a severe form of the disease, it means a two to five year life expectancy.

Like Les Halpin and Jenn McNary, the mother of twins afflicted with a similar rare disease, he has a simple request: earlier access to medicines that might help improve or extend his life.

The US introduced a mandatory pre-approval process for pharmaceutical drugs after over 100 people were killed by an untested drug formulation . Today, each drug must go through a series of strictly controlled trials, including Phase 1 tests on healthy volunteers, followed by Phases 2 and 3 which test the drug and dosages on smaller and then larger patient groups. The process is estimated to cost $500 million per drug and to take 8 – 12 years.

The process is designed to ensure the efficacy of drugs has been scientifically demonstrated to a very degree of confidence, and to ensure that patient safety is sufficiently protected. In many ways it has been a triumph of science and regulation.

But it has been a failure for one small group of patients: those with rare, imminently lethal diseases, for whom there are no existing good treatments. Those who will die in less than 8 years. It is these patients who are asking to have access to untested medicines, and to avoid placebo controlled trials, where half the participants are given no drug at all. Les has proposed innovative methods of patient recording data. I have discussed this proposal previously on this blog , and in a joint paper with Les Halpin and clinicians.

Read More »Safety First? How the Current Drug Approval System Lets Some Patients Down

Can Facts Be Racist?

Here is the sequence of events.  1. Richard Dawkins tweets that all the world’s Muslims have fewer Nobel Prizes than Trinity College Cambridge.  2. Cue a twitter onslaught – accusing Professor Dawkins of racism.  3. Richard Dawkins writes that a fact can’t be racist.Read More »Can Facts Be Racist?

Would you hand over a moral decision to a machine? Why not? Moral outsourcing and Artificial Intelligence.

Artificial Intelligence and Human Decision-making. Recent developments in artificial intelligence are allowing an increasing number of decisions to be passed from human to machine. Most of these to date are operational decisions – such as algorithms on the financial markets deciding what trades to make and how. However, the range of such decisions that can… Read More »Would you hand over a moral decision to a machine? Why not? Moral outsourcing and Artificial Intelligence.

Dangerous dogs and proportionate sentencing

The government is currently consulting on whether the maximum sentences for aggravated offences under the Dangerous Dogs Act 1991 should be increased. This offence category covers cases in which someone allows a dog to be dangerously out of control and the dog injures or kills a person or an assistance dog. Respondents to the survey can indicate whether they want tougher penalties for these sorts of cases. The suggested range of penalties for injury to a person – as well as death or injury of a guide dog – are three, five, seven or 10 years in prison. In relation to cases involving the death of a person, the respondent is asked: “Which of the following options most closely resembles the appropriate maximum penalty: seven years, 10 years, 14 years or life imprisonment?”

Given that the current maximum sentence for cases involving death is two years in prison, changing the law to match any of these options would represent a significant increase in the severity of the sanction. Whilst the current two-year maximum has understandably struck many as too low, it is important that those responding to the consultation — and those revising the law it is intended to inform — think carefully about the principles that would justify an increase.Read More »Dangerous dogs and proportionate sentencing

Not all philosophers are equal

Not all ethical issues are equally important. Many ethicists spend their professional lives performing in sideshows.

However entertaining the sideshow, sideshow performers do not deserve the same recognition or remuneration as those performing on our philosophical Broadways.

What really matters now is not the nuance of our approach to mitochondrial manipulation for glycogen storage diseases, or yet another set of footnotes to footnotes to footnotes in the debate about the naturalistic fallacy. It is: (a) Whether or not we should be allowed to destroy our planet (and if not, how to stop it happening); and (b) Whether or not it is fine to allow 20,000 children in the developing world to die daily of hunger and entirely avoidable disease  (and if not, how to stop it happening). My concern in this post is mainly with (a). A habitable planet is a prerequisite for all the rest of our ethical cogitation. If we can’t live here at all, it’s pointless trying to draft the small print of living.Read More »Not all philosophers are equal

I’m Too Unsexy For My Shirt

Follow David on Twitter @David Edmonds100

Thinking only of your career prospects now, is it better to be sexy or unsexy?  This person was said to be too sexy and lost her job.   But at Abercrombie & Fitch the allegation is that you can’t get a job unless you’re good looking.  The A&F image of glamour has helped the company make enormous profits:  I once bought a T-Shirt for a godless child at an A&F store, to pay for which I had to sell my wardrobe. Read More »I’m Too Unsexy For My Shirt

Enhanced punishment: can technology make life sentences longer?

by Rebecca Roache

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Edit 26th March 2014: It’s been pointed out to me by various people that this blog post does not make adequately clear that I don’t advocate the punishment methods described here. For a clarification of my views on the subject, please go here. For a Q&A, see here.

Today, the mother and stepfather of Daniel Pelka each received a life sentence for his murder. Daniel was four when he died in March last year. In the last few months of his short life, he was beaten, starved, held under water until he lost consciousness so that his mother could enjoy some ‘quiet time’, denied medical treatment, locked in a tiny room containing only a mattress on which he was expected both to sleep and defecate, humiliated and denied affection, and subjected to grotesquely creative abuse such as being force-fed salt when he asked for a drink of water. His young sibling, who secretly tried to feed and comfort Daniel, was forced to witness much of this; and neighbours reported hearing Daniel’s screams at night.

Daniel’s mother, Magdelena Luczak, and stepfather, Mariusz Krezolek, will each serve a minimum of thirty years in prison. This is the most severe punishment available in the current UK legal system. Even so, in a case like this, it seems almost laughably inadequate. The conditions in which Luczak and Krezolek will spend the next thirty years must, by law, meet certain standards. They will, for example, be fed and watered, housed in clean cells, allowed access to a toilet and washing facilities, allowed out of their cells for exercise and recreation, allowed access to medical treatment, and allowed access to a complaints procedure through which they can seek justice if those responsible for their care treat them cruelly or sadistically or fail to meet the basic needs to which they are entitled. All of these things were denied to Daniel. Further, after thirty years—when Luczak is 57 and Krezolek 64—they will have their freedom returned to them. Compared to the brutality they inflicted on vulnerable and defenceless Daniel, this all seems like a walk in the park. What can be done about this? How can we ensure that those who commit crimes of this magnitude are sufficiently punished?Read More »Enhanced punishment: can technology make life sentences longer?

Lying in the least untruthful manner: surveillance and trust

When I last blogged about the surveillance scandal in June, I argued that the core problem was the reasonable doubts we have about whether the oversight is functioning properly, and that the secrecy makes these doubts worse.  Since then a long list of new revelations have arrived. To me, what matters is not so much whether foreign agencies get secretly paid to spy, doubts about internal procedures or how deeply software can peer into human lives, but how these revelations put a lie to many earlier denials. In an essay well worth reading Bruce Schneier points out that this pattern of deception severely undermines our trust in the authorities, and this is an important social risk: democracies and market economies require us to trust politicians and companies to an appropriate extent.

Read More »Lying in the least untruthful manner: surveillance and trust