by lyle e davis
As someone who has faced end of life issues on five separate occasions, I find a number of questions arising that need answers and action. Sadly, these are questions that have been around for more than awhile and the answers are no more clear today than they were a hundred years ago. To be sure, we have a hospice system that, nationwide, is ready to assist folks as they and their families deal with end of life issues.
But there is, it seems to me, a greater issue. Whether society should be allowed to decide how the life of a terminally ill person is ended. My answer is a strong NO.
It helps to understand the question on this sensitive issue, if you’ve been there. If you’ve been a witness to not one, but five individuals, facing end of life issues.
In perhaps the most dramatic of cases, my late dad and I watched my mom, his wife and lifelong companion, degenerate rapidly from Alzheimer’s and utlimately die - a mixed blessing. I was relieved to see that mom was no longer suffering, no longer going through the humiliation and embarrassment an individual with advanced Alzheimers endures. But dad, well, he had to watch mom die. Right in front of him.
“I’ve never seen a person die before,” he said, “and I don’t ever want to see another one die.”
Though we are an extremely strong supporter of hospice efforts nationwide, hospice screwed up in this instance. I had signed a DNR (Do Not Resuscitate) order regarding mom. Hospice failed to have a doctor sign off on the DNR order which they had in their files. (Mom was in Florida, I was in California). Without a DNR order that had been signed by a physician the attendants at hospice were legally required to attempt heroic measures to revive mom, including resuscitation. So instead of mom passing peacefully, they had to apply defibrillator paddles, causing her to jump around like a fish on the floor . . . and dad had to witness this.
That’s no way to die.
That’s no way to see a loved one die.
There has to be a better way.
After mom had passed I recall a conversation dad and I had. We had both witnessed her deterioration from Alzheimer’s. We had seen how this disease and the related impacts affecting an 88 year old body caused considerable episodes that would have been humiliating and embarrassing had mom the mental capacity to know what was going on.
“If I knew I was going to have Alzheimer’s, I would want to turn the lights out,” said dad. I agreed with him. Still do.
The problem here comes in that if you are logical and lucid enough to be aware, perhaps after having been advised by your physician, that you are in the initial stages of Alzheimer’s, you are still capable of enjoying life . . . breathing in the fresh, sweet air . . . enjoying the vibrant colors of trees, flowers, the sky - you’re not ready to ‘turn the lights out.’ But when you have deteriorated to the point where you would prefer to ‘check out,’ you are in no condition to take the necessary action. And, it’s not an action you can ask someone else to do, be it a loved one or friend. If they do, they could, and likely would, go to prison. And there’s the rub. No one, not even your physician can legally assist you to “turn out the lights.’
Anyone who is in the health industry, however, knows that it is a fairly common practice. Physicians, and sometimes nurses, assisting a terminally ill patient to die. Peacefully, quietly, with dignity.
I have talked with physicians, nurses, hospice workers, most of whom, once they get to know and trust you, will acknowledge that this happens. For obvious reasons, most of these conversations have to remain off the record.
No one assisted mom to die. It may have happened with dad, but, somehow, I doubt it. It is quite likely that it happened with a 26 year old nephew of mine who died from cancer. We have reason to believe, and we are not unhappy about it, that he was given an overdose of morphine suppositories by his attending nurse and then passed peacefully . . . with no more pain. The fact that his attending hospice nurse was a cousin add to our belief that this is probably what occurred. We’ll never know.
All of this is not new, however. It’s been going on for ages.
Let’s go back a bit in time. Back in January 1936, King George V lay weak and sick in his bed at his Sandringham estate. The 71-year-old monarch had long suffered from chronic bronchial problems, exacerbated by heavy smoking, and a few days earlier he had taken to bed with a cold. According to contemporary reports, he inquired after the state of his empire before lapsing into unconsciousness. The illness would be his last.
The doctor attending the king, Lord Dawson, had been told by his wife, Queen Mary, and his son, the Prince of Wales, that they did not want the king's life needlessly prolonged. The royal physician followed instructions — about 11pm on January 20, he administered lethal doses of morphine and cocaine. The king's death was announced in The Times the next day under the headline "A Peaceful Ending at Midnight".
King George V
The details of his last hours were not known at the time, but the decision to euthanize the head of an empire came to light 50 years later, when Lord Dawson's notes were made public. The king's biographer accused the doctor (then dead) of murder but others characterized it as a "mercy mission."
If we take a look around the world we find about as many disparate views as there are countries.
THE UNITED STATES
The Death with Dignity Act of 1994 legalized assisted suicide in the state of Oregon. In other jurisdictions, they are forced to continue living against their wish, until their body eventually collapses, or until a family member or friend commits a criminal act by helping them commit suicide.
A MATTER OF LAW
There is no law forbidding assisted suicide. Swiss authorities appear to view euthanasia of terminally ill patients as a "humane act."
Since 1937, the Swiss criminal code has said suicide is not a crime and it may be assisted for altruistic reasons, but not for financial gain or other self-inter motives. Anyone assisting a suicide with these motives could be jailed for up to five years.
Pro-euthanasia campaigners see the absence of a ban as tacit permission, although their stance has never been tested in the Swiss courts.
In April 2002, the Netherlands became the first country to legalize euthanasia, and it has the most liberal laws in the world. Under Dutch law, doctors can administer a lethal dose of muscle relaxants and sedatives to terminally ill patients at a patient's request.
It was the second country to legalize euthanasia, in September 2002. Belgian law also lays out specific requirements for a doctor and patient, similar to the Dutch law.
The Rights of the Terminally Ill Act in the Northern Territory, passed in 1995, allowed "physician-assisted dying." The legislation was overturned by Federal Parliament in 1997.
Let’s take a closer look ‘Down Under.’ More than 70 years after the fact, Australians do not have the legal right to end their lives as their former monarch did, but the topic of euthanasia remains controversial. Euthanasia — defined as the "bringing about" of death in a person with an incurable disease — is illegal, yet Australians continue to do it, as shown in the case of Dr John Elliott, the terminally ill man who travelled to Zurich to end his own life legally and with dignity on Thursday, January 25th, 2007. Dr Elliott's voluntary death is simply one of the more recent episodes in the history of euthanasia but it is certainly was not the last. Far from it.
Most recently the issue has been in the headlines due to the efforts by Australia’s Attorney-General Philip Ruddock to ban the publication of a new book by prominent euthanasia campaigner, Dr Phillip Nitschke, on assisted suicide. The Peaceful Pill Handbook evaluates the "options" available to those who wish to end their own life — they include a drug called Nembutal, available from Mexico, carbon monoxide, various prescription drugs and even cyanide. The book also offers tips on how to conceal evidence of suicide.
But the book exposed an anomaly in Australian law and embarrassed the Federal Government, when copies of it were seized by customs as illegal imports, despite it having been cleared by the Office of Film and Literature Classification for restricted publication. It is this OFLC ruling that Mr Ruddock is appealing, the latest volley in the ideological opposition of the Government to euthanasia and its promotion. At present the book is banned in both Australia and New Zealand but can be readily obtained in America. Amazon.com, for example, stocks and sells it at a cost of $35. Barnes and Noble in Escondido neither stocks it nor are they able to order it online.
Still looking at Australia’s handling, or non-handling of the problem, euthanasia was legal, at least in the Northern Territory, for a brief period in 1995, before the territory's Rights of the Terminally Ill Act was overturned by the Federal Government. Helping someone to commit suicide is expressly outlawed in the (Australian) states, although patients do have the right to refuse treatment. In addition, doctors may treat symptoms in the terminally ill, even if that treatment causes the death of the person, says Dr Thomas Faunce, a senior lecturer in medical ethics at
the Australian National University. "It's called the 'double-effect doctrine'," he says. "It often provides a practical solution."
Studies of doctors worldwide have shown anything from 4 to 10 per cent have intentionally assisted a patient to die and very occasionally a prosecution will occur. There is anecdotal evidence to suggest euthanasia is sometimes practiced at home, by people caring for their loved ones, and periodically folks will travel to Mexico and attempt to smuggle back lethal doses of Nembutal — a killer drug one of the elderly women called her "insurance policy." (Note: The smuggling of any prescription drug out of Mexico is a very serious problem and is not to be dealt with lightly. Elderly and ill senior citizens have been arrested and thrown in prison for this violation. Being in prison in Mexico is not a good thing. The simplest solution here is to make certain you have a Mexican doctor write out a prescription).
Dr Phillip Nitschke
Dr Faunce believes these examples, along with the "double-effect doctrine," represent a sort of legal double-speak, and in its place there should be a proper legislative framework to allow people to end their own lives when suffering becomes too great.
"It's useful when you're developing social policy to get evidence rather than make an ideological decision," he says of the Federal Government's decision to overturn the legalization of euthanasia in the Northern Territory. "I think they should have allowed the Northern Territory position to continue and monitored it and collected evidence, then we could have had a rational debate."
Professor Peter Baume is a doctor and NSW Voluntary Euthanasia Society patron. He also thinks the current legal situation is ridiculous.
Dr Thomas Faunce
"What you're allowed to do is treat symptoms, and they pretend that if you treat symptoms and happen to kill someone, it's not euthanasia," he says. "There may be a legal and technical difference but there is no moral difference."
Professor Baume believes that formalized euthanasia laws would extend to the poor and powerless the right to a peaceful death. At present, he argues, the rich and well-educated can discuss dying options with their doctors, dictate their wishes in a living will in the event they become incapacitated, and pay for proper palliative care. Because the poor are more in awe of their doctors, he says, they are less willing to take control of their own palliative care and request death when it all gets too much. This creates inequality in health outcomes.
Studies in America show that those from lower socio-economic backgrounds, in particular African-Americans, are less trusting of their doctors and more likely to be opposed to euthanasia. This effect decreases the more education they have.
Late last year the AMA held a summit on the issue of the care of the terminally ill and dying, out of which came a discussion paper. The aim was to clarify the AMA's position on the issue, which affects not just doctors in palliative care, but those in oncology and in neonatal and intensive care units.
"We support palliative care and allowing the patient to relieve pain and suffering … it's about doctors supporting patients at times when death may be imminent," says Dr Rosanna Capolingua, Director, General Practice Liaison at St John of God Hospital, Subiaco, Western Australia. "But we have not brought ourselves to support euthanasia or assisted suicide. Doctors are not involved in the termination of life. That's not what we're about."
Professor Peter Baume
Patients invariably feel better about their impending deaths if they are given control over their care and are surrounded by loved ones, Dr Tonti-Filippini, a medical ethicist and ethics consultant to federal Health Minister Tony Abbott, says. In this way, death is similar to childbirth. This should be our focus when dealing with the terminally sick, he believes.
But euthanasia advocates such as Dr Faunce argue that it is impossible for patients to feel in control if the biggest decision of all — the timing and manner of their own death — is out of their hands.
Dr Faunce says recent court cases show that the legal system is inherently incapable of comparing existence to non-existence. But for many terminally ill patients, non-existence has many more benefits than downsides and that's because, for them, the issue is not a legal one.
"It's an abstract argument for judges but it's not for the people who are suffering," he says. "It should be the choice of the individual. Society's got no right to dictate how people should end their lives."
ASSISTED SUICIDE v EUTHANASIA
Assisted suicide involves a person who is terminally ill intentionally killing themself with the help of another individual. Another person may provide the necessary medication but does not administer it.
Euthanasia can be Active, such as a doctor giving a lethal injection, or Passive Euthanasia, hastening the death of a person by altering some form of support and letting nature take its course. For example: Removing life support equipment (e.g. turning off a respirator) or
Stopping medical procedures, medications etc., or
Stopping food and water and allowing the person to dehydrate or starve to death. Not delivering CPR (cardio-pulmonary resuscitation) and allowing a person, whose heart has stopped, to die.
Perhaps the most common form of passive euthanasia is to give a patient large doses of morphine to control pain, in spite of the likelihood that the pain-killer will suppress respiration and cause death earlier than it would otherwise have happened. Such doses of pain killers have a dual effect of relieving pain and hastening death. Administering such medication is regarded as ethical in most political jurisdictions and by most medical societies.
These procedures are performed on terminally ill, suffering persons so that natural death will occur sooner. It is also done on persons in a Persistent Vegetative State - individuals with massive brain damage who are in a coma from which they cannot possibly regain consciousness.
I must admit that serious thought to the question of end of life issues came to me after I had to put down two dogs, one of a close friend who could not bear to handle it herself, and the second, my own beloved dog of 18 years, Trixie.
In both cases I was with them as they were euthanised. In both cases they went quietly, peacefully, painlessly. I remember thinking to myself at the time . . . we who love our animals can give them a peaceful end to their lives. Take away their suffering. Yet society requires us, as human beings, to endure the pain, the humiliation, the embarrassment, the burden of dying slowly, sometimes painfully. Even when morphine and other drugs numb the pain, that is no life to lead . . . lying in bed, unclear of mind and body.
In researching this article I came across the following piece that was written for the owners of pets. As I read it . . . it made as much sense to me to consider this as an end of life solution for our human loved ones as much as for our animals. As you read the following, mentally substitute one of your loved ones in place of the pet:
Euthanasia is performed to prevent your pet from suffering from an incurable or painful disease or illness. It is defined as "an easy or painless death". Some people see it as the final act of love made by an owner for their suffering pet. Euthanasia is performed by veterinarians administering a barbiturate (a form of anaesthetic) into a vein (usually the front leg). They will usually go to sleep within 10-30 seconds and then the heart stops beating soon after. If your pet is older or very ill, their veins can become fragile so a catheter may be placed into the vein first to make the process easier for your pet. Once the injection is given euthanasia is very peaceful and quick so please let the vet or nurses know if you need some time to say goodbye first. You can then tell the vet when you are ready.
The decision to euthanize is probably one of the hardest decisions you may ever have to make. Talk to your vet about your pets illness and they can advise you on euthanasia, but ultimately the right time is when you feel ready. The right time is when you can look back and think that you did the kindest thing possible for your loved one. After the years of selfless love they have given you, this is the most important gift of love you can return.
When the decision to euthanize has been reached, you need to call your vet and arrange a time that is suitable to all. Most vets will try to fit you in at a quiet time or come to your home, as they understand that this is a very difficult time for you. Staying with your pet is usually recommended as it can help seeing how peaceful and painless the procedure is.
For many, not witnessing the death can make it difficult for them to accept that their pet is really gone. On the other hand it can be traumatic for some owners, and you should ask yourself if you are able to handle this. Uncontrolled emotions preceding the euthanasia can sometimes upset your pet so it is sometimes best for these owners not to stay during the procedure.
Often talking calmly to your pet and saying goodbye keeps them calm, and seeing your face right until the end can be comforting for you both. As we all handle grief differently, you need to make this decision yourself, and when you are ready.
Sydney Morning Herald
Jacqueline Maley, writer.