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. Continue reading
Enhanced punishment: can technology make life sentences longer?
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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? Continue reading
Global Positioning Systems and Dementia: An Ethical Analysis
Sussex police have announced a scheme to fit people suffering from dementia with GPS tracking systems. These small devices will allow police to locate the wearer, and also allow the wearer to reach a 24 hour helpline by pressing a small button on the device. It has been claimed that these devices will save police time and resources, as well as reducing both the potential risk to dementia patients who go missing, and the anxiety that relatives of the missing person will feel when their loved one goes missing.
However, some parties have decried the introduction of this scheme as barbaric and inhumane. For example, Neil Duncan-Jordan, the national officer of the National Pensioners’ Convention, claimed that the scheme serves to stigmatise sufferers of dementia by equating them with people who have committed a criminal act. Continue reading
The last sweet years or bad romance? Handling infidelity in the nursing home
Ulf suffers dementia and lives in a nursing home. He often interacts with Lena, who also has dementia. They seek each other out, invite each other to their rooms, hold hands and kiss. They can clearly express what they prefer (or not). The staff think they enjoy life and each other’s company. There is just one problem for the happy couple: Ulf is married, and his wife is not happy. She and their children strongly dislikes the relation between Ulf and Lena and asks the staff to keep them apart. They argue that if Ulf had been free of dementia he would not have desired contact with Lena; he might sometimes even be confused and think Lena is his wife.
The situation was posed as a question to the ethics committee of the National Board of Health and Welfare in Sweden, and it recently responded that the staff should not try to interfere in the relationship: the welfare and autonomy of Ulf is prior to the wishes of the family. An earlier question dealt with a somewhat similar case, where the cuckolded wife demanded that her husband be both separated from the other woman and medicated to “dampen” him. The committee found that it would be against the autonomy of the man to be medicated against his will, and the staff did not have a right (legally or morally) to prevent patients from seeing each other.
The interesting question is what to make of romances that come about due to dementia. Are they authentic? How do they relate to the interests expressed earlier in life?
A Puzzle about Dementia
Dementia is one of the biggest challenges facing the British NHS, with one in three people developing the disease after the age of 65. This partly explains why there has been such excitement in scientific circles over intravenous immunoglobulin (IVIg), which appears to slow the rate of mental decline in sufferers from Alzheimer’s.
Obviously, from the societal point of view, dementia is a bad thing, and so this news is good. But from the personal point of view, should I be concerned about dementia – at least in its more severe forms? Epicurus famously claimed that we shouldn’t fear death, since when it arrives we won’t be around any more. Many seem to think the same about severe dementia, despite the fact that many – often the same people – also fear such a state.
Here’s how that view might arise. Imagine some extremely unpleasant experience, such as a very painful operation for which anaesthetic is for some reason unavailable. If you’re told you’re about to have such an operation, you will be very afraid, because you think the person under the knife will be you – it is you who will be feeling all that pain. But severe dementia can also be extremely unpleasant, so why isn’t it just like the operation?
There is one big difference. When the surgeon approaches you with her knife, you will have many of the same memories, beliefs, desires, and so on that you have right now. There will be a great deal of what Derek Parfit calls psychological connectedness and continuity between your mental states now and those you’ll have just before the operation. But that isn’t the case with dementia. You will have lost nearly all your memories, and so on. All that will be left is the capacity for conscious experience. And though that conscious experience might be deeply unpleasant, the line of thought goes, that doesn’t matter especially to you, since ‘you’ won’t be around any more, and there will be no important psychological continuity and connectedness between that individual and you now.
My own response to the prospect of dementia, however, is different. I can’t see why it matters very much whether, during the unpleasant experience, I have the same memories, beliefs, and so on that I do now. Consider the painful operation again. It might be so painful that you can’t *think* of anything else while it’s going on – so your memories, beliefs, and so on are entirely inaccessible. Does that somehow make it less bad? What I care about is what will be experienced by the capacity for consciousness I now possess, and if that capacity is going to be exercised in the future in such a way that there is consciousness of seriously unpleasant experiences – whether through some operation, or dementia – that concerns me now whatever memories, beliefs, and so on I am going to have, or indeed lack, in the future.
The immorality of public consolation in the face of ageing
In case you didn’t know: The EU is currently celebrating the “European Year for Active Ageing and Solidarity between Generations”. The paramount aim of this initiative is to increase the well-being of the elderly by raising awareness that they can still contribute to society by ageing actively, that is, utilising their abilities for their own good and the good of society. In the best case, according to this initiative, not only older people will benefit from ageing actively but also younger ones who do not have the experience and wisdom of earlier generations. Although this is a noble aim, the answer to the question why there should be such a European Year is a gross and seriously immoral distortion of reality: “Because, too often, getting old is perceived as a threat instead of an achievement, both for individuals and for societies. […] Staying active as we grow older is key to tackling the challenge of ageing.” Continue reading
Ending life and end-of-life care
Eve Richardson, chief executive of the National Council for Palliative Care and the Dying Matters coalition, argues that the government needs radically to improve end-of-life care in the UK, and makes several excellent suggestions about how that might be done.
I agree wholeheartedly, and would like to add a suggestion of my own: that end-of-life or terminal care should be a medical specialization not restricted to hospice care. Hospice care involves merely the palliation of patients’ symptoms (where such palliation is possible – sometimes, as in cases of advanced cancer, for example, pain cannot be controlled, and patients are left to die in agony). Such care should include voluntary euthanasia as a possible intervention. What might we call such a specialization? I suggest telostrics (telos being the ancient Greek word for end).
Of course, I am assuming that such euthanasia would be legal. But as it certainly should be, and quite probably soon will be, my suggestion here is not out of place.
It might be thought preferable that a loved one – a friend or relative – administer the fatal dose. That might indeed be best, but there may well be cases in which there is no suitable person available, or in which the patient would be concerned about the potentially traumatic effect it might have on that loved one.
What about an ‘ordinary’ medical practitioner? Why do we need a specialism that includes euthanasia? Again, this may work in some cases. But there is still a danger of trauma, and choosing what’s best for any particular patient may itself be difficult. Further, the issues surrounding end-of-life decisions, both for patients and their relatives, are complicated, and experience in them will often be beneficial for all concerned.
But aren’t doctors trained to sustain life? And won’t they be naturally traumatized by their killing others, just as most of us would be? Not all doctors think this way. Some of them see their role as making the lives of their patients as good as possible, and this may involve bringing that life to a less agonizing conclusion. Such doctors might, if my proposal were adopted, choose to become telostricians.
Should one have a tummy tuck?
“Beauty is a greater recommendation than any letter of introduction.” – Arthur Schopenhauer, Aphorisms on the Wisdom of Life
As our wealth increases, more and more of us undergo cosmetic surgery: From tummy tucks, breast enlargements and nose jobs to hair transplants and face-lifts: You name it—and pay—they fix it.
Even though cosmetic surgery has grown to become a multi billion-dollar industry, it is looked at with some suspicion. Many feel that there is something superficial and, perhaps, slightly desperate about undergoing surgery for aesthetic reasons. In academia, at least, although a hair transplant and a teeth bleaching might pass, chances are that a breast enlargement would raise eyebrows.
It is not be unlikely, however, that the eyebrows in question would be both plucked and colored—for we already do quite a bit to enhance our looks. We work out, try to dress well, shave, and go to the hairdresser. We make sure we get tanned during summer. Some of us are on a diet, wear make up, or dye our hair.
Choosing To Die
Matthew Rallison is a sixth-form student who is visiting the Oxford Uehiro Centre for Practical Ethics for his work experience placement.
Sir Terry Pratchett’s documentary, “Choosing to die” and the recent deaths of Ann McPherson and Jack Kevorkian (inventor of the Mercitron) have recently raised the debate of the legalisation of euthanasia, alongside criticism of the BBC’s bias favour towards the subject.
The latter of these issues is, to an extent, accurate as the programme echoes Pratchett’s support of euthanasia. Yet the conclusion of the programme, for me, offered personal reflection, rather than an affirmation that euthanasia (or assisted suicide) is morally correct. Watching, on screen, the death of Peter Smedley was not a compelling argument but humbling. Peter was unassuming as he fell out of consciousness. “A good death,” as Pratchett describes it. The scene offered a powerful impression of human dignity and spirit, rather than promoting death, or suicide. It supported virtue in life (or in leaving it). I reject the ex-Bishop of Rochester, Michael Nazir Ali’s claim that it the programme depicted “glorified suicide.” It did not.
Predictors of Alzheimer’s vs. the Hammer of Witches
Matthew L Baum
Round 1: Baltimore
I first heard of the Malleus Maleficarum, or The Hammer of Witches, last year when I visited Johns Hopkins Medical School in Baltimore, MD, USA. A doctor for whom I have great respect introduced me to the dark leather-bound tome, which he pulled off of his bookshelf. Apparently, this aptly named book was used back in the day (published mid-1400s) by witch-hunters as a diagnostic manual of sorts to identify witches. Because all the witch-hunters used the same criteria as outlined in The Hammer to tell who was a witch, they all –more or less- identified the same people as witches. Consequently the cities, towns, and villages all enjoyed a time of highly precise witch wrangling. This was fine and good until people realized that there was a staggering problem with the validity of these diagnoses. Textbook examples (or Hammer-book examples) these unfortunates may have been, but veritable wielders of the dark arts they were not. The markers of witchcraft these hunters agreed upon, though precise and reliable, simply were not valid.
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