Monday, May 31, 2010

What makes a 'good death'?

By Ronan McGreevy, The Irish Times - Tuesday, March 2, 2010
Dying patients who are sedated too much can be deprived of the chance to make their farewells to loved ones
IN LEO TOLSTOY’S famous novella The Death of Ivan Ilyich , the title character is a noted magistrate in Russia who is suddenly struck down by a terminal illness.
In his dying days, he screams in agony and rails against his misfortune. He is notably blind to the fact that he has lived a selfish life, putting his career before his wife and children.
Though he is in great pain, in his last hours he finally gives in to his fate and becomes reconciled to his family.
The story is cited in a recent paper by the Lancet which addresses the controversial issue of pain control in terminally-ill patients.
The article in the Lancet says there is such a thing as a “good death” and the desire, especially among relatives to control pain whatever the cost, can have unintended consequences.
Chief among these is that many dying patients do not get a chance to make their farewells at the end of life because they are too sedated.
The issue of the “good death” has been addressed in a recent discussion document issued by the English Catholic bishops entitled A Practical Guide to the Spiritual Care of the Dying Person .
Terminally ill people can achieve the “good death” by “setting things right as much as they can, making peace, saying their goodbyes”, the document says.
It warns that overtreatment of pain can “render people unconscious or semi-conscious when this is not necessary for effective symptom treatment”, adding that “some people will prefer less comfort for more lucidity”.
Dr Stephen Higgins, a consultant in palliative medicine in Tallaght Hospital and at Our Lady’s Hospice in Harold’s Cross, says the document encapsulates many of the issues facing those involved in palliative care.
Higgins will be speaking at a conference on palliative care to be hosted in Our Lady’s Hospice tomorrow. It will seek to address the fact that although 90 per cent of patients who receive palliative care have cancer, the disease accounts for less than a third of all deaths.
Higgins says the Catholic Church’s discussion paper is a “very good document”, adding: “I’d struggle to find anything in it that I would disagree with.”
He is particularly impressed with the contention that sedation which leads to a lack of consciousness is unnecessary in most cases.
“There is a perception that there is a great struggle within palliative care between symptom control and sedation. It is an issue sometimes, but is very much in a minority of situations.”
Higgins says the sleepiness that people often associate with sedation is frequently the natural process of dying.
He believes it is critical that the wishes of the patient should be sought when they are well enough to issue instructions about how they want to be treated in their final days.
“We try to get a steer every time from the patients or from the family. The ‘good death’ varies. It is not the same for everyone,” he says.
“It is rare that we reach a stage where the painkillers are going to cause so much trouble that the person is going to be sedated.”
Geriatrician Prof Desmond O’Neill says the story of Ivan Ilyich is a perfect illustration of the importance of people being sentient in their final hours.
“There is an issue of undertreatment of pain out there, but things are getting better.
“The polar opposite to the threat of undertreatment is a monosomatic overtreatment and not looking at the wider spiritual picture of families and other people,” he says.
“It is helpful that somebody says there is a wider picture here and remembers that it is not just pain, and I think that is very sensible.”
He believes that the desire to control pain is often a well-intentioned one among the relatives of terminally-ill people, but it can often be contrary to the wishes of the dying person.
“A child might be concerned about their mother’s pain, but their mother might have other priorities. The danger is that the family will want to have their hand on the steering wheel and they are not listening to the older person,” he explains.
The Catholic Church in Ireland has made its own contribution to the end-of-life care issue with a submission to the Law Reform Commission, entitled Advanced Directives for Care , and also to the Irish Hospice Foundation’s Forum on End of Life in Ireland .
Fr Kevin Doran, the Irish Catholic Church’s spokesman on bioethics, says part of the spiritual dimension of dying is to allow the patient come to terms with their own death in their own way.
Fr Doran says he has come across dying people who were too sedated to participate in the last rites.
“We were going through the motions. We weren’t able to pray with them and help them in the process of dying,” he says.
Anything which unnecessarily reduces a person’s awareness diminishes the chances of them participating in one of the key moments in their journey of life, he believes.
“Part and parcel of palliative care is to allow people to deal with the reality of their death in a fully personal way so their death is not just something that happens to them,” he says.
“It is important that they are not torn from life so to speak, but rather that they take leave of their lives and their loved ones in a calm, less traumatic way.”

Friday, May 14, 2010

A Lasting Testament to Life - The Diving Bell and the Butterfly


The Diving Bell and the Butterfly, by Jean-Dominique Bauby
Published by Alfred A. Knopf in 1997

A Book Review by Bobby Matherne ©1999
With "locked-in" syndrome due to some event in his brain stem, Bauby is completely paralyzed, able only to move his left eye and blink. Otherwise completely rational, this former editor of Elle, a prestigious Parisian magazine published in twenty plus countries, is completely bed-ridden, breathes through a respirator [diving bell], and is fed through a feeding tube. Using his eye blinks, he is able to communicate and write this book.

A wonderful story - one that works on many levels that an ordinary story doesn't work, because it's so real. Such as when he calls the cripples at his hospital "tourists" because they'll get to go home eventually, whereas he's apparently in for the duration. Or when he tells about his imaginary eating in the best restaurants in Paris and calls it "simmering memories."


[page 36] Once, I was a master of recycling leftovers. Now I cultivate the art of simmering memories. You can sit down to a meal at any hour, with no fuss or ceremony. If it's a restaurant, no need to call ahead. If I do the cooking, it is always a success.


Best part is "indigestion is never a problem." Poignant. Having René Auberjonois reading it with his sonorous french accent is a wonderful touch - one can easily imagine that one is hearing the author Bauby himself talking inside his head. I first listened to this book on audio tape due to an error in ordering, then later I read along with the audio tape and was able to notice minor changes between the text and the tape, such as substituting on the tape the word "cocoon" for "diving bell". Another interesting juxtaposition is the sentence, "The French team played like pigs." in the book and on the tape it came out, "The French team played like sick cows." Must be an idiom I'm not familiar with that allows the substitution of sick cows for pigs.

He recalls the story of going on holiday with his girl friend to Lourdes and getting in a half-mile long line full of cripples waiting for the Madonna to appear and cure them. He told her he wouldn't stand in the line, and she responded that it would do a sinner
like him a lot of good. His response was prophetic.

[page 64] "Not at all. It could even be dangerous. What if someone in perfect health happened to be here when the Madonna appeared? One miracle, and he'd end up paralyzed."


Years later he becomes the most crippled of any of the cripples when a brain lesion severed his brain functions at the brain stem and places him into his "locked-in" syndrome. He is only able to move his head a bit from side to side and blink his left eye. With that eye he "speaks" to visitors by having them go through the frequency order of the french alphabet ESARIN TULOMD [ETAOIN SHRDLU is the frequency order of the English alphabet] one letter at a time until he blinks and then they go on to the next letter. Using that tedious method, over the course of a summer, he is able to dictate this book.


There are a few choice quotes from Bauby's text that I'd like to share:

[page 16] Since the demarcation line [of his paralysis] runs across my mouth, I can only half-smile, which fairly faithfully reflects my ups and downs.
In the following section, Bauby relates his imaginary relationship with the Empress Eugénie, wife of Napoléon III , whose marble bust graces the corridor of the Naval Hospital, Berck-sur-Mer, whose patroness she is. One day as he stares in her stained glass image, he notices an unknown face in the reflection. With a twisted mouth, damaged nose, one eye sewn shut, the other wide open, the floating head seems "to have emerged from a vat of formaldehyde."

[page 25] For a moment I stared at that dilated pupil, before I realized it was only mine. Whereupon a strange euphoria came over me. Not only was I exiled, paralyzed, mute, half deaf, deprived of all pleasures, and reduced to the existence of a jellyfish, but I was also horrible to behold. There comes a time when the heaping up of calamities brings on uncontrollable nervous laughter - when, after a final blow from fate, we decide to treat it all as a joke. My jovial cackling at first disconcerted Eugénie, until she herself was infected by my mirth. We laughed until we cried. The municipal band then struck up a waltz, and I was so merry that I would willingly have risen and invited Eugénie to dance, had such a move been fitting. We would have whirled around miles of floor. Ever since then, whenever I go through the main hall, I detect a hint of amusement in the empress's smile.


Bauby had often read Alexander Dumas' The Count of Monte Cristo, the last time was shortly before his stroke, during which he had thought a lot about Grandpapa Noirtier, the first character in literature with "locked-in syndrome". He toyed with the idea of writing an updated story of the character. Suspecting now that his attempted affront to the great novel somehow led to his current condition, he says:

[page 48] To foil the decrees of fate, I am now planning a vast saga in which the key witness is not a paralytic but a runner. You never know. Perhaps it will work.
In another poignant reminder of how a severe handicap can drastically change one's life, here is Bauby's recollection of the Father's Day he spends with his children Théophile and Céleste:

[page 70] Today is Father's Day. Until my stroke, we had felt no need to fit this made-up holiday into our emotional calendar. But today we spend the whole of the symbolic day together, affirming that even a rough sketch, a shadow, a tiny fragment of a dad is still a dad.


In his room he receives mail and his nurses hold the letters spread out before him so he can read them. He takes notice of a curious phenomenon that others would do well to notice: if one is superficial in conversation about one's thoughts, others will not reveal the depths of their thoughts.


[page 83] Some of them are serious in tone, discussing the meaning of life, invoking the supremacy of the soul, the mystery of every existence. And by a curious reversal, the people who focus most closely on these fundamental questions tend to be people I had known only superficially.


Near the end of the book, Bauby is reduced to examining the contents of the half-opened purse of his stenographic assistant, Claude. Napkins, folded franc notes, metro tickets, keys, "keys" he thinks:


[page 131-132] Does the cosmos contain keys for opening up my diving bell? A subway line with no terminus? A currency strong enough to buy my freedom back? We must keep looking. I'll be off now.


Thus he ends the book. On the book jacket it says, "Jean-Dominque Bauby died two days after the French publication of his book. The Diving Bell and the Butterfly is a lasting testament to life."

Monday, May 10, 2010

Scientists communicate with man deemed to be in vegetative state

Irish Times Fri Feb 05, 2010 by DICK AHLSTROM, Science Editor
Fri, Feb 05, 2010

DOCTORS HAVE managed to “communicate” with a man diagnosed as being in a permanent vegetative state for the past five years.
The man was able to answer a series of personal Yes or No questions by thought alone, despite being in a vegetative state after a severe brain injury.

The researchers who conducted the experiments now believe that up to 40 per cent of patients with disorders of consciousness may be misdiagnosed, and that many may still be able to communicate with loved ones and doctors despite their condition.

“With further development, this technique could be used by some patients to express their thoughts, control their environment and increase their quality of life,” the researchers said.

A team involving staff from the universities of Cambridge in the UK and of Liege in Belgium joined to study a group of 54 patients with disorders of consciousness. All had experienced severe brain injury and were suffering from disorders of consciousness, a condition that leaves them apparently wakeful but without any conscious awareness.

This included 23 in a vegetative state and another 31 described as in a “minimally conscious” state.
The researchers used functional magnetic resonance imaging to study brain activity. It allows them to watch the brain working in real time, detecting the minute increase in bloodflow to areas where thought is causing activity in the brain. They used well-tested methods to deliver clear brain scan responses. The patients and matched healthy people who acted as controls in the experiment were all asked to imagine standing on a tennis court and hitting tennis balls. Alternatively, they were asked to imagine walking through familiar streets or through the rooms in their houses.

The researchers cued each subject with the word “tennis” or “navigate”. The person would imagine one or the other and then be allowed to rest with the cue “relax” before the next cue was given. Details of their work were published yesterday in the New England Journal of Medicine.

Amazingly, they found that five patients, almost one in 10, showed an active brain response, one controlled by the patients themselves. Four of these were considered to possess the lowest order of consciousness, diagnosed as being in a vegetative state with one in a minimally conscious state.

Importantly, the scans for the brain-injured patients closely matched the patterns seen in the control subjects, showing that patients were noting the cues and then responding appropriately.

The researchers then tried to advance this, again using healthy controls and a single brain-injured patient, one of those diagnosed as in a vegetative state.

Subjects were asked simple autobiographical Yes/No questions, such as “Do you have any brothers?” They were asked to think of playing tennis if the answer was Yes and think of navigating streets or through a house if answering No.

Not surprisingly, the healthy controls achieved a 100 per cent response. Yet the severely brain-injured patient, who had been in a permanently vegetative state for the past five years, was also able to answer his questions accurately.

He correctly answered five of six questions. The sixth was not incorrectly answered – he just did not answer Yes or No, leading the researchers to believe he might not have heard the question, fell asleep or had for some reason lost consciousness. The researchers stressed the importance of their scan technique to search for “undetected awareness” in patients suffering from brain-injury-induced disorders of consciousness.

It could greatly improve diagnosis when combined with existing clinical assessment, they said. More importantly, it could open up an unexpected channel of communication for these patients.

Monday, May 3, 2010

Time to teach everyone the facts of death

BREDA O'BRIEN - The Irish Times - Saturday September 19 2009
Debate on advance care directives needs to be part of a wider review of end-of-life issues
JAMES HALL was a rich and arrogant Jungian analyst. In 1991, he suffered a devastating stroke which triggered locked-in syndrome, the condition which Cork woman Catherine O’Leary also has. It leaves an active mind trapped in a completely unresponsive body. Most of his colleagues believed he should be allowed to die.
Luckily for James Hall, two of his colleagues laboured to help him communicate. Hall was able to point out letters on a board using eye movements, although at a desperately slow pace.
His friends told him to spell out, “I want to live”, to convince sceptical colleagues who refused to believe he had any cognitive capacity. Yet when they began, the second letter he indicated was D, not W. Taking nearly an hour to do so, he spelt out: “I demand to live, asshole.”
The interesting thing is that Hall had an advance directive declaring that if he suffered devastating loss of physical capacity, he would not wish to live.
All changed utterly, however, when he was in the situation himself. He now lives at home with his wife, communicates using a computer, and has published three books.
So are advance care directives a bad idea? Not at all. They can be a valuable aid in determining a patient’s wishes, but as the Law Reform Commission’s (LRC) report, Bioethics: Advance Care Directives, pointed out this week, they cannot be taken as an absolute.
The LRC was also careful to point out that advance care directives are not euthanasia by the back door. Instead, they are an attempt to create a framework where people can have a meaningful input into their own care, even in situations where they no longer have the capacity to communicate on their own behalf.
It is generally recognised that a person has a right to refuse medical treatment, most especially when treatment would be burdensome, painful or uncertain of success.
However, the LRC report is not entirely without controversy.
When dealing with artificial nutrition and hydration, it suggests a distinction between the use of it when there is hope of recovery, and when there is not.
In short, it suggests it would be ethical to remove artificial nutrition if a situation were permanent.
In the Terri Schiavo case, her husband succeeded in having her feeding tube removed, claiming she would have wished it given her level of handicap after a heart attack. Her family disagreed vehemently.
Disability advocacy groups, such as Not Dead Yet, protested that Terri Schiavo was dehydrated until dead because of disability discrimination, that is, the refusal to believe that a severely handicapped person could have a meaningful life. Family and nurses who had cared for her for years were devastated by the means of her death. So issues around the removal of artificial nutrition and hydration are by no means as unambiguous as the report suggests.
Perhaps the greatest contribution that the LRC report makes is to suggest that discussion of advance care directives should take place within a far wider debate about end-of-life issues and communication with those who are ill and dying.
The ongoing End of Life Forum, set up by the Irish Hospice Foundation, is doing very valuable work in an area most of us don’t even wish to think about. Dr Maurice Manning, speaking at the inaugural meeting, said that we accept the need to teach young people about the facts of life, but what about the facts of death? It is a good question.
Does anyone sit with a dying person, waiting with empathy to read the cues that the person is ready to discuss impending death, explaining gently what is likely to happen, reassuring about pain levels, and liaising with family?
Or do people die in crowded wards with a television blaring, and other patients’ visitors chatting just beyond the curtain?
Or what about when someone is taken to AE in an ambulance? Will the people following in a car have a place to park? Will the porter know they are coming? Will there be a private place to talk to a doctor? If the person dies, who accompanies the family to the mortuary? Will the mortuary be suitable for people of different cultures?
Our doctors receive minimal training in how to deal with those who are dying, and their families. Communication is a process, not an event, and requires time and sensitivity.
It may be part of a medical culture where death is seen as failure. On the other hand, not everyone can cope with full and frank discussions of possible options, or even the reality that he or she is dying.
While most of us would like to die at home, three-quarters of us will die away from home. Again, the Irish Hospice Foundation is to the forefront of efforts to bring a hospice ethos to hospitals, that is, a holistic and integrated approach that aims to maximise the physical, emotional, social and spiritual wellbeing of the patient, and also reaches out to the bereaved and to carers.
As public meetings and workshops are ongoing, there is still a chance to contribute to the debate, in the hope that eventually everyone will have at least the possibility of a “good death”.