09/29/12

None of Us Get Out of Here Alive

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Another wonderful review of The Amateur’s Guide To Death and Dying; Enhancing the End of Life has appeared. This time the review comes from my colleague, the very talented author, Mikaya Heart. Her review appears on the Blogging Authors website.


Click on the Blogging Authors’ banner above for the full review.

In our society, death is a taboo subject, and many people won’t talk about it at all. I’ve always been fascinated with the process of dying, and how someone’s energy remains after they die, often affecting us on a deep level. I recently read a great book on the subject by Richard Wagner. A gay man, an ex-Catholic priest, and a psychotherapist, Richard was first exposed to the process of dying during the AIDS epidemic in the early eighties when his friends were dying in droves. I won’t say any more about his own journey since it’s all in the book, but rest assured—he knows what he’s talking about. As he says, none of us will get out of here alive—so let’s talk about how to make that process of transition easier.

Richard started a group called Paradigm specifically designed to help sick, elder and dying people and their friends and families avoid the kind of nightmares that he had seen repeated again and again, based on society’s phobia about death. Perceiving that basic information is being withheld from dying people, he ran countless groups on death and dying in the San Francisco Bay Area, and has helped thousands of individuals over the years. He took groups of ten people for ten weeks, inviting various experts to come and give presentations on different aspects of what is involved in dying: legalities such as wills and executors; talking to one’s family and friends; assisted dying; what to expect of your body as it gives up; spiritual aspects of dying, and other topics.

The Amateur’s Guide To Death and Dying is an in-depth account of one of these courses, profiling the ten people who attended it, each chapter covering a different week. Those ten fictional characters are, Richard says, “composites” of some of the real people who took his course over the years that he ran it. The reader gets to know the individuals very well (sometimes painfully well) throughout the course of the book, as they reveal their deepest inner fears in the safety of the group. They all become more familiar with the concept of death and how to deal with it. Some of them, interestingly, move further away from it, while some go the other way. They all become more empowered. This book is written from a personal perspective, which is essential for any good writing on such a personal subject. Richard deserves congratulations for being brave enough to deal with such a difficult topic in a very open, accepting and compassionate manner.

My only complaint is that I wanted more. Since this book is quite long enough as is, I hope that Richard and others will consider writing more books. Because, as a society, we have failed miserably in talking about the realities of death and dying, there is a great deal still to be discussed. How can relatives and friends help a person who is dying? Do dying people benefit from getting permission to die from those they are close to? How can we change our desperate need to hold on to what we call the state of living even when it is clearly time to let go? How can we learn to relate to the positive aspects of death? How does the energy of an individual affect us when they are no longer present in a body? Richard’s book touches on some of these very profound questions, but they (and many others) need to be addressed in greater depth.

Mikaya Heart is an award-winning author who writes on subjects as varied as orgasm, shamanism, sports, lesbianism, politics and travel. Her memoir, My Sweet Wild Dance, which won a Golden Crown Literary Award, was described as “soul-refreshment of the highest order.” Mikaya uses shamanic methods to teach people how to operate from a place of trust instead of fear.

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09/27/12

End of life options worthy of attention

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By Joe Timmerman

Death is a very difficult topic to discuss. It’s not a subject that most people enjoy pondering. It is especially difficult to discuss with someone whose death may be imminent. Like many issues, it might be easier to just avoid the topic altogether. However, as is often the case, pretending the issue doesn’t exist won’t make it go away, and can often make the end result more difficult to deal with. Thus, the news the Madison medical community will start providing end-of-life planning as a standard patient service is welcome, indeed.

End-of-life planning involves sitting down and coming up with an “advanced directive.” An advanced directive is essentially a set of written instructions regarding a patient’s preferred medical care that are carried out in the event the patient is no longer able to make those decisions. For example, a patient might specify that, if they should enter into a vegetative state, they should be taken off the ventilator and allowed to die.

Preparations for death, such as end-of-life planning, are becoming increasingly accepted in the medical community. According to guidelines published by the American Society of Clinical Oncology, all terminally ill patients should sit down and discuss their end-of-life wishes with their family and health care team.

Advanced directives are beneficial for a variety of reasons. To begin with, people should have their health care administered according to their own preferences. If someone wishes to be kept alive on a ventilator, then he or she should be able to. If someone wishes instead not to be put on a ventilator, then they shouldn’t have to be put on one against their will. Just because someone can’t communicate his or her preference doesn’t mean it shouldn’t be honored. Either way, this is utility enhancing for the patient.

As for the health care provider and the patient’s family, they aren’t forced to make life-or-death for someone else. Making these decisions are, as one might expect, extremely taxing, and everyone is better off if the patient makes his or her own decision ahead of time rather than leaving it to a third party. In a powerful Time Magazine article, Joe Klein recounts his difficult experience making these decisions for his own parents. As he writes, “I spent the next five months as a death panel for both my mother and my father.” He later writes he was “extremely fortunate” to transfer his ailing parents to a health care provider that was much more willing to candidly discuss death.

Coming up with an advanced directive also helps to keep health care costs down. CBS News reports Medicare spent $50 billion in 2009 on doctors and hospitals over the last two months of patients’ lives. The kicker? “20 to 30 percent of these medical expenditures may have had no meaningful impact.”

Over the course of one year, Medicare alone spent as much as $15 billion of treatment had no positive effect on patients’ quality of life. This is a prime example of wasteful spending that, in today’s age of fashionable austerity, needs to be eliminated. A significant portion of this spending could be eliminated if people were only kept alive as long as they wished to be.

It might seem that doing anything less than everything to extend a person’s life would be unethical. However, if the person doesn’t want to be kept alive though extraordinary measures only to suffer for longer, their wish should be honored. This can only be accomplished through people having candid discussions with their families and doctors. The fact that local health care providers are starting to encourage these discussions is good news for all Madisonians.

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09/26/12

Hump Day Humor

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09/24/12

Death is part of our human experience

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There are times when it is better to “let nature take its course”.

By SALLY FOSTER-FULTON

The debate around assisted dying is undoubtedly a difficult and sensitive one. However, Nelson Jones’s recent blog, conflating as it did two very different issues, served only to muddy the waters.

In the piece, Jones sought to argue that because, in certain situations, a clinical decision is made by medical personnel not to attempt resuscitation of the patient, this is essentially equivalent to the medical profession making the decision to end the life of a vulnerable person. It would be more honest, Jones argued, to allow the choice of when their life should end to be made by the patient.

There can be little doubt that medical technology is now such that we can artificially prolong the lives of people through interventions which are at times inappropriate. However, in our death-denying culture, there are times when we need to remember that death is a part of our human experience, and that not every death is the result of a medical failure. There are times when the better decision is to let go, to step back and “let nature take its course”. This is the purpose of the “do not attempt resuscitation” (DNAR) decision: that further medical intervention would be futile and of no benefit to the patient.

However, the withholding or withdrawing of medical treatment differs fundamentally from the deliberate ending of life. The Church of Scotland is active in many projects offering care, comfort and support to the vulnerable in many practical ways. We therefore find the prospect of legislation allowing assisted dying to be deeply concerning, as it has the potential to undermine focus on the care and comfort of all as they move through the last stages of life- especially those who are placed in a vulnerable position as a result of age, incapacity or other circumstance.

While personal autonomy is indeed an important issue, it is a dangerous fallacy to believe that a person can act independently of all others, with their actions having no consequences for anybody else. Interpersonal relationships are vital: life is lived and death experienced as part of community. Assisted suicide cannot be a personal choice because it will inevitably effect everyone, and how tragic if those most vulnerable in our communities begin to feel that their lives are somehow less worth our resources. What a tragically bleak view of human life- and how far removed from the call of the church to show love and concern, compassion and support for all around us.

Death, as a natural process, cannot be avoided: despite the inevitable sadness involved in saying farewell to a loved one, emphasis should be placed on ensuring that all participants in the process experience as fulfilled and comfortable a final journey as possible.

We would emphasise the need for all aspects of care to be improved; there is concern, however, that assisted dying legalisation will undermine, rather than enhance, other aspects of end of life care and the manner in which society values every human being. Clearly it would be a step too far if vulnerable patients felt pressured to opt for assisted dying because of a lack of resources to give them an acceptable quality of life in their last months.

In common with many people of faith, the Church of Scotland would affirm that the worth and dignity of every human life needs to be emphasised and celebrated. Indeed, the Gospel of Jesus Christ which the Church of Scotland seeks to live out emphasises the value and worth of all human life, no matter the circumstances. Any legislation to bring about the deliberate ending of a human life would be a sea-change in how we perceive one another. Society places a prohibition on the killing of others (because we understand the profound commonality of life): this is a line which we must not cross.

Complete Article HERE!

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09/24/12

Permitted assisted dying could increase protection for vulnerable people

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The only person who can decide if a life is worth living is the one living it.

By: NELSON JONES

Tony Nicklinson may not have achieved his wish for doctors to be allowed to terminate his life at a place and time of his choosing, but he did manage to push the subject of assisted dying higher up the public agenda than it has been for a long time. And while he didn’t convince the judges at the High Court, public opinion would seem to be firmly on his side. A YouGov poll conducted on behalf of the British Humanist Association last week found that a massive 81 per cent of adults (and two thirds of Roman Catholics) would support the right of “mentally competent individuals with incurable or terminal diseases” to access medical support to end their lives. Only 6 per cent were “strongly opposed”.

Support, too, has come from some leading politicians, such as the newly-appointed health minister Anna Soubry, who called the present state of the law “ridiculous and appalling”.

Even so, opposition to any change remains entrenched and seemingly unmovable. Many MPs, almost all religious leaders and the official policy of the BMA are implacably opposed to legalising voluntary euthanasia, which the current BMA president has described as “a journey I just don’t want us to even start out on”.

For some, the question is forever out of bounds because life is sacred and can properly be terminated only by God. But there are more pragmatic arguments, too, that convince many that assisted dying is inherently dangerous. It’s said that if the law were changed, vulnerable people would feel under pressure to end their lives in order to spare their families (or the taxpayer) the “burden” of their continued existence. That a system of planned death, timetabled according to personal or medical convenience, would cheapen life itself, would enshrine in law the idea that some lives were not worth living, and could potentially lead to a eugenic society in which the chronically sick, the elderly and the disabled were seen as disposable, by themselves or by others.

Such an argument may sound plausible. But can we be sure that we don’t live in such a society already? Today we learned of the case of an unnamed man, aged 51, with Down’s Syndrome and other disabilities, who spent some time in hospital last year. After “AWA” was discharged it emerged that without the knowledge of his family or carers doctors had placed a “do not resuscitate” (DNR) order on his file. The sole reason given for the notice – which would have resulted in his inevitable death had he suffered a cardiac arrest or encountered serious breathing difficulties – was apparently his disability. He does not seem to have been terminally ill.

We must, of course, be careful. It is only one case. The NHS trust concerned has declined to comment on the ongoing legal action and there may be significant facts that haven’t been reported. AWA’s solicitor, Merry Varney however, described it as “one of the most extreme cases we have seen” and declared that “to use Down’s Syndrome and learning difficulties as a reason to withhold lifesaving treatment is nothing short of blatant prejudice.”

“Extreme” this case may be, but problems relating to DNR notices are far from unheard of. In another case currently before the courts, David Tracey is suing Addenbrooke’s hospital in Cambridge over a DNR issued in respect of his wife who died there last year, and which was apparently discussed neither with her nor with him. He was also being represented by Merry Varney, who argued that “a competent patient must surely know when a decision to withhold potentially life sustaining treatment has been made.”

A survey of 100 hospitals carried out last year by the Care Quality Commission found that at least five were in breach of medical guidance regarding consultation with families before issuing a DNR notice. On one ward, as many as a third of such orders were issued without consultation. The charity Action on Elder Abuse described such practices as “euthanasia by the backdoor”.

Even if such cases are not the norm, they might be seen as evidence of a callously utilitarian approach to questions of life and death even without legalised euthanasia. AWA’s case in particular suggests that vulnerable patients might be especially, well, vulnerable to such an attitude. Yet others tell a different story, of elderly and vulnerable or terminally-ill people, sometimes in pain, past all hope of full recovery and who in an earlier age would have died peacefully, being artificially kept alive by well-meaning doctors and by the death-cheating power of modern medicine.

In today’s legal and medical regime, it would appear, some people are allowed to die who would rather live, while others are unwillingly kept alive when they want to die.

These two undesirable situations in fact represent different sides of the same coin: the paternalist attitude that sees medical professionals, rather than individual patients, as the people best placed to make the decision about whether he lives or dies. Tony Nicklinson, intellectually fully competent and certain in his own mind, is not allowed to determine the manner of his death. Nor is the more obviously vulnerable AWA. A system supposedly concerned with protecting the vulnerable only succeeds in reinforcing the godlike power of doctors.

For that reason, I suspect legislation that permitted assisted dying would actually increase the protection currently afforded to vulnerable people, and increase respect for the value of life. There’s no contradiction between saying that all lives are valuable and that some have become intolerably burdensome. Rather, knowledge that they would not be condemned, in extremis, to a lingering agony at the hands of modern medicine would free some patients to live. And those who chose for reasons of faith or optimism to cling to every last painful moment of life could do so without causing others to feel guilt for their plight, which is the real “burden” which people with severe disabilities or who are in the last stages of terminal illness impose on their loved-ones.

The only person capable of deciding whether a life is or is not worth living, ultimately, is the one who is living it.

Complete Article HERE!

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09/22/12

Cemetery Art

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I’ve been watching a fascinating BBC series on the history of Scotland. This got me to thinking.  Memorializing the dead in medieval europe.

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