On Friday as I walked up the pathway leading to the Hospital entrance to visit my friend, a Patient Transport Vehicle was leaving the driveway taking her, along with quite a few others, to a Rehabilitation Centre…..almost a month ago at death’s door and then slow and painful recovery ensured…..what a difference a day can make, a week, a month……..

I think about my friend as a person who “had a life full of interests, concerns, problems to be solved, the usual family dramas, what’s for tea tonight….missing her computer” and wonder how she’ll cope with long term rehabilitation….perhaps like death’s door, she’ll defy the odds and go back home after all – sooner rather than later….I know that is the intention today when I visit her in her new establishment.

With the Nurse’s Ban’s taking effect last week, my friend frequently missed afternoon tea and supper. Dishes left from one meal to another, food half eaten just sitting….I remembered the rigors of nursing standards in a bygone era and started to comprehend the true definition “in my day!” which my mother was apt to say on the odd occasion.

Our joint complaint previously spoken about, regarding the soured vomit (actually digested blood!) left on the “return” table for five days, for which “no one” was responsible for – not the cleaner, nurse or doctor – turned out to be the responsibility of the Ward Orderly! A person between the “cleaner” and the nurse, is responsible for the yucky personal clean up jobs of the patient such as was required in this case. Apparently they clean the bed down etc as well, but if you blinked, you miss the action!

I felt the standards had really hit rock bottom when the patient was requested to urinate into her “nappy” type pants rather than ring for a pan!…..My website is world wide, so Australia really can’t have a go at any other country’s standards, when an immobile person is required to wet her pants deliberately so as not to inconvenience the staff!

As part of her preparation for rehabilitation “Maybelene” was required to learn to walk again on her frame. Quite a difficult and painful task with dickey feet and hips to contend with after being bedridden for weeks. The Occupational Therapist arrived just as the patient required the pan for passing faeces (pooh!)…After wasting precious moments convincing the OT she couldn’t wait half an hour while the Therapist watched her “walk”, the pan was provided, the woman left the room leaving the bell out of the reach of the patient!. After a long time of thumping her stick to be heard, on the hand basin, a nurse came in and was asked where the OT was. A little time later the nurse returned saying the OT was not attending to her again at all that day….Opportunity lost to assist the recovery just that little bit quicker because she’d needed the pan urgently…..Great people skills that OT had!

It floored me to hear my friend explaining her dilemma to the Doctor to be brushed off briefly with the comment ” ah well, the occupational therapy will be better at the next place anyhow”…..

It could only get BETTER from my assessment of the whole organisation, from cleaning, to nursing, to OT, but most of all, the Doctoring!!! She, the Doctor, was as callous and disdainful of any human emotion I could imagine, and I could only be thankful I never copped her “administrations” as a patient. (However the Patient Manager appeared to be very efficient)

My friend, when asked by this doctor, as a daily routine “How Do You Feel?” said on the last occasion “Well, What Would You Like Me to Say? How would you like me to respond to that question?”………so each person in the room understood the answer was meaningless to the doctor (including the trainee beside her)….wasn’t interested in the answer and that it had showed! For the Doctor it was her career opportunity going through its process.

And the Right to Life people wonder why old, sick, frail and “fed up” patients would rather die than continue with the “healing process” if one had to spend their entire end of life with such attitudes so evidently showing how bored people are with caring for the elderly sick!. Fortunately, in this case there was a light at the end of the tunnel is the form of Discharge!

It was perhaps fortunate that my friend though very sick was quite capable of making her presence felt, but I wondered about all those others who lay in their faeces for hours, were left unfed, unwashed on a regular basis and generally neglected. Who didn’t have the presence of mind, or a vocal advocate to protect their interests!

I thought the general standard of nursing appalling, with the exception of two nurses, who appeared run off their feet while others appeared to chat among themselves at the station further down the ward…….Perhaps their patients didn’t require the same level of full on care, but surely they could assist each other for the patient’s sake.

I won’t forget the twenty six days I experienced visiting my friend in this particular suburban hospital. The standard of nursing explains why disease spreads within the hospital system and one is actually healthier at home than exposed to blatant evidence of neglect ongoing. Lying in faeces in fundamental to bringing one’s self esteem to rock bottom and when one talks about loss of dignity it probably starts at the “bottom”.

It wasn’t the nurses’ ban responsible because the shoddy standard remained the same regardless. I am so very glad “Maybalene” has been moved and look forward to seeing her better nursed out of a State Hospital, than in one! We’ll see!

26 October 2007 from Reuters

http://blogs.reuters.com/faithworld/2007/10/24/does-italy-have-its-own-terry-schiavo-case/

Does Italy have its own “Terry Schiavo case”?

October 24th, 2007, filed by Tom Heneghan

Does Italy have its own “Terry Schiavo case“? Eluana Englaro has been in a persistent vegetative state (PVS) for the past 15 years and her father is trying to get legal permission to remove her feeding tube. Italy’s highest appeals court recently sent the case back to a lower court in Milan that had refused to let him do so. The local media have already dubbed Eluana “Italy’s Terry Schiavo” and the retrial (when it happens) looks set to spark off another major bioethics debate there.

Beppino Englaro has been caring for his daughter at home and says it’s time to free her from “the inhumane and degrading condition in which she is forced to exist”. The appeals court (Court of Cassation) said the lower court must determine whether her PVS is irreversible and whether she expressed the wish not to be kept alive if in a PVS. Her father said she had expressed that wish, but apparently has no living will or other tangible evidence to back that up.

Eluana’s case lacks the husband-vs-parents element that propelled the Schiavo case into the U.S. national headlines in 2005. But thorny cases of bioethics get into the national spotlight in Italy. A Roman judge is still investigating a doctor who last year removed the respirator of paralysed muscular dystrophy patient Piergiorgio Welby, 60, who had described his life as “torture” and asked for the right to die. Only Switzerland, the Netherlands, Belgium and the U.S. state of Oregon permit assisted suicide for the terminally ill.

One Italian angle to the story is the traditional influence of the Roman Catholic Church, which just last month repeated its stand that it is morally wrong to remove artificial nutrition and hydration tubes from PVS patients, even if they will never regain consciousness. The Vatican daily Osservatore Romano has already denounced the Court of Cassation’s decision in the Eluana case as unacceptable because it would “lead legislators fatally towards euthanasia”.

There’s not much written in English about this case yet, but — a sign of the times — Eluana already has a sub-entry (under “euthanasia”) in the Italian Wikipedia.

Postscript for Victorians, Australia. It is being muted in Parliamentary circles that the Dying with Dignity Victoria will have its Charter on Euthanasia debated in Parliament next year. A vote would be taken on conscience, if the Right to Light don’t win their way yet again at the expense of the majority who support voluntary euthanasia with strict guide lines implemented to protect all those worthy people who see suffering has some merit to it even when death is imminent!

Ah well, the joys of being in a public health system, being old, being immobile, being reliant on others to “look after you”….

Yesterday’s visit to that large suburban hospital, left me feeling quite pleased about my own memories of service within the private health care system.

Last Thursday night after my visit, my friend spat and vomited a quantity of digested blood….black glugee muck from deep down in the body, thick and enough to make other visitors gag and recoil prior to the operation which my friend undertook two weeks previously. Unfortunately she’d had another bout of spitting, gagging and vomited into the only thing on hand, a towel. As a consequence the dark ooze spilled over the edge of the towel and down onto the chromed legs of her “Return” (that table, food and necessities are placed on during one’s hospital stay).

The vomit was still evident yesterday, Monday afternoon, so of course, when the Doctor called on my friend I took the opportunity to ask why the vomit had not been efficiently cleaned down from the furniture….black staining was clearly visible on the chrome. The look the Doctor gave us both, was one of blank amazement!…Her look and language inferred – It was not her job to concern herself with such matters and please speak to a “nurse”…I responded by asking about the aspect of a basic hygiene issue in a room with rampant gastro, with Health Care workers knowing there was an Outbreak with at least five people on the Ward effected and with stale blood left uncleaned since Thursday. There was also the matter of large urine spots beneath the commode, together with the previous days food droppings still left unattended.

My friend had asked the “cleaner” I used the word advisedly, yesterday morning to please clean up both the Return and the base of the Commode Chair and floor underneath her chair, to be told “it was not her job”.   A lip balmer she’d dropped a week ago, I hauled out from under the wall radiator.

The doctor heard us out impassively then left without a word….but within minutes the nurse (the one who’d done all the running for the ward that I could observe) came in and asked about the “complaint”…We filled her in on the details and she promptly tried to contact the “cleaner” to have the five day old blood removed….without immediate success….

I left my friend with the official form another nurse brought to the room, mumbling about what to write, where to start….One thing she had right, was that she is fortunate enough to be totally competent to be seen and heard effectively….What concerns both of us is the total lack of apparent understanding by the Doctor’s expression, of preventive illness both to the current patient, visitors and staff who were entering and leaving this dirty unhygienic room.

In discussion with a relative last night, she shared the thought that this was today’s modern medicine at work and that we expected “too much” of staff based on levels which did not allow sufficient time for any one duty to be properly performed. I retaliated with the comment that perhaps too many items were now disposal after one use, adding millions of dollars to the budget….She went on to say that when she was having her two day maternity stay in another public hospital, her sheets were bloodied as a result. At the insistence of sheets being delivered, she made up her own bed with clean linen…..

Sounded like an African Hospital system to me, without the clean linen! Clean your own blood off the floor, own vomit off the furniture, lunch tray still there at 5 pm, sitting on the bed, don’t expect too much service and attention with a smile because it is hard to come by!….Perhaps more staff of a “menial” nature could be gainfully employed, to supplement duties of doctors and nurses for whom basic cleaning is “not their role to consider”….Two sweeps into the doorway of a hospital room should never been seen as “doing the job properly” and then declining the more “grotty cleaning jobs” selectively. Not enough “Indians”? with a Chief who supervises at least every second day whether cleaning is about preventative medicine in a possibly “couldn’t care less” society

Admittedly the nurse, once advised of the problem appeared to give it the same sense of urgency that we ourselves felt. The fact the cleaner had not returned her call by the time I’d left was not her problem.

I am asking what the hell, the State Opposition Member for Health is doing about bringing these shortcomings to the foremost of the General Public.

The Patient Manager rang me within 3 hours of receiving my email of complaint about an unnamed and unknown doctor telling my friend their hospital policy required them to resuscitate her.

We caught up with each other the next day during visiting hours and I was gratified I was able to talk freely about my complaints in front of the patient. I had read my email, I sent off to the Hospital Management to her after the event, based on our discussions over some three weeks. The actual nursing standards were not addressed but fortunately our fears were allayed with my sighting their documentation in my friend’s file.

I was able to establish for myself that my friend’s Respecting Patient Choices was duly filed and that on her Admission this action sheet had been duly noted. In “Refusing Medical Treatment” the hospital use their own paperwork which stands valid for 28 days after which time it is renewed based on your own instructions to them, given that a dramatic improvement may have eventuated. I made sure I sighted it for myself. Although the patient asked to be allowed to hold and read it, I believe the Patient Manager declined her request gently because of the severe, highly contagious gastroenteritis within the room, which was understandable.

I was further reassured by the large conspicious stamp “Alert” on the front of the file, which indicates there is a Respecting Patient Choices within the file. I questioned that the form itself was four or five pages down in her folder and could be overlooked, but again was reassured that at HandOver of Staff, these matters are highlighted.

Also Medical Staff (doctors) for some three years now, have as part of their training induction, a briefing on the requirements of the Medical Treatment Act of 1988, and again twice each year there is a refresher course on the subject. I felt the processes in place were very good in spite of one apparent slip up. I asked about a “Right to Life ” doctors views and was told it would not be allowed to be implemented over Respecting Patient Choice.

I asked why there was no obvious means of identifying the existence of the formalized process NFR around the bed where in a “panic” action might be implemented, incorrectly. The Patient Manager explained they had tried a variety of processes but with privacy it was difficult….people were asking what the green dot on the Patient’s Bed Head indicated and of course, not all patients wanted their friends and relatives knowing of their decision for the end of life process.

Interestingly my friend noticed a difference in staff attitudes to her almost immediately before I’d had a chance to read my letter of complaint to her. If for nothing else, I was grateful for that. Immediately she too became animated, and didn’t once mention again the fact “they didn’t care, because she was old and ugly”….The fact she has started “improvement” is an added bonus for me.

Realistically I think she knows it is unlikely she will be able to return home but in the same way, I had her “dead and buried” three weeks ago, I will make no more such assumptions! As I explained to the Patient Manager, my friend will live until she dies, full of excitement about fixing the affairs of the Nation!

Disappointed that she can’t actively contribute to the Philip Nitschke Campaign for the Federal Seat of Menzies, other friends will step in and close the breach. Interesting times ahead……My friend had arranged to have Philip’s Board in her Front Garden, but her son “wants a $50 deposit” to make sure it will be removed after the upcoming election. I would love to see Dr Nitschke giving Kevin Andrews the fright of his life, given how insensitive the Minister is to anyone who is “different”….With regards “boards” I know what the son means! Quick to instal but a bugger to get rid of!

Today, I intend to relax and enjoy a great family reunion!

A copy of the email I sent off to my friend’s hospital administration yesterday morning, and to which they had responded with a phone call yesterday afternoon even as I was on the road visiting my friend. As I was editing personal details out with words like “my friend” instead of her name, I have tears streaming down my face with just the visualisation of the position “my friend” has found herself in. Perhaps sicker now than when she left home in the ambulance. I will have to wait before I return their call and regain some equilibrium.

This is a Complaint about a number of issues and I would appreciate its contents being given serious consideration for the wellbeing of not just one patient, but Hospital patients in general.

I suggested yesterday that we write something down together and I would give it to the doctor in charge, but she is too ill to cope with such demands on her mental ability just right now. I have taken it upon myself therefore to write this email overnight. I need reassurance also about the standards of health care in a Public Hospital for my own peace of mind as well as my friend.

As a visitor and close friend of (name deleted), currently placed in (position deleted ), aged 74, I wish to complain about her expressed wishes being ignored by at least one staff member. It is distressing her.

As an individual, she is both a Member of Dying with Dignity Victoria and Exit International. Accordingly she has filled out the required forms relating to Living Will/Advance Directives/Respecting Patient Choices. The written formalities have been regularly updated in her file over years. At one stage they were “lost” under the mountain of paperwork but I understand they are currently placed in her medical records and visible.

My friend has expressly said that she does not want to be resuscitated should she suffer a heart attack, but to both our amazement the Doctor she had spoken to about this during her current stay in Box Hill Hospital said staff would do so regardless. As you would know, the documents are not legally binding on Staff, but it has always been our advice that in a situation such as my friend finds herself in, her end of life choices would be respected.

My friend was required to agree to be brought to the hospital before the Paramedics would administer pain relief to her prior to being admitted. Given she was severely distressed with pain, she felt vulnerable and agreed. Again she agreed to surgery because she thought she’d be “better off” from her medical complaints, but it seems, just to have shifted her pain and distress to other points in her body. Now she feels so weak and unable to help herself recover. She is not depressed, but rather more angry and upset that the Staff fails to understand the needs of the frail elderly with any degree of sympathy for her circumstances. I noticed yesterday when asked by a staff member “how she felt today?” and her answer was “Terrible, thank you”, it was just like the supermarket checkout chick who really isn’t listening to the response. It was as if she hadn’t answered at all!

She feels as if she is dying very slowly. Staff when asked, will not tell her if her current serious case of gastroenteritis will eventually lead to her death. Previous days to yesterday, she had spent long periods of time lying in her own excrement. She needed the pan urgently during my visit yesterday three times for the least morsel she ate and it was only my insistent voice that avoided her soiling her bed yet again. It is very distressing for her as she tries desperately to locate the buzzer which falls constantly out of her immobile reach, as she forces herself to try and keep her legs together with a major incision down her chest.

My friend is very intelligent and therefore the pain of her loss of dignity the more telling because of it.

With her lack of mobility she is developing pressure spots which compound her misery and although I was able to move her from a technique I learnt forty years ago, I find it difficult to believe heavy elderly people can’t be better provided for. She told me the folds of her skin are red but that the staff is too busy to administer lanoline or equivalent.

And on another manner, I have been made aware that previous to her change of rooms because of the gastro, when trays of food are placed down on the return, not necessarily in front of the patient, the staff does not bother to establish that the patient can reach the food (heavy containers for sick people to cope with). I found myself attending to all three ladies in my friend’s Ward, opening their soup tureens, lifting lids, opening milk, placing it within their reach, and in my friend’s case, cutting up her food and placing it under her chin.

You know, real intimate nursing duties of an era long gone, but still as relevant today as ever!

All three were experiencing the same problems and I was told from the other bed, that it wasn’t just that day!….perhaps this is an issue that can be addressed by the Nurse Management of the Department because I’m told that this Hospital has always treated the patients with a lack of consideration for non medical issues.

Yesterday, although a strike day by nurses, the lady running after June with the bed pan made it every time, but had I not been physically able to locate and provide a sense of urgency, I am sure my friend would have remained in her mess as she had done the day before, after I’d left.

My friend is a very strong minded woman, who does not have a religious conviction. I had suggested that she ask to speak with a Counselor within the Hospital to have her circumstances clarified as I thought perhaps she initially may have spoken to a Right to Life Doctor, when what she needs is her own Pro Choice Wishes Respected.

Thank you for your time.

Mary Walsh

October 18, 2007

Postscript to readers of this article living in the Australian State of Victoria:

What is formally required to be completed for hospital records, is a

Refusal of Treatment Certificate: Competent Person

(Medical Treatment Act 1988 No 41/1988 Schedule 1 Section 3.5 (2)

I am yet to ensure this appropriate form for refusal of resuscitation arising out of a Cardiac Arrest with palliative care requested, being for Maximum Relief of Pain and Suffering
being duly filled in on the correct spaces with a doctor’s signature required but not necessarily one from within the Hospital!!!

It does pay not to assume one’s rights in a hospital or even before you get there.

Here’s what I’m told has happened in part and what I have witnessed.

My friend in dire straits suffering excruciating pain, had an ambulance called to the home in the wee small hours of the morning. Before the Paramedics would administer any pain relief an agreement to go to hospital had to be made.

Imagine it, you’re old, tired, in pain, and desperate. You don’t really want to go to hospital because that means you’re losing your independence, but the pain is severe and you desperately need relief from it and now! Right now!. But the pain relief comes at a cost! You must agree to be taken to a hospital before they’ll provide that pain relief. Is that a form of blackmail? To force extremely ill people to comply with the bureaucrats. The same bureaucrats who’d cancelled three previous appointments, over a period of months, due to insufficient staff being available to service the outpatients in the field of the necessary medicine…One because, due to illness, was unable to drag oneself off the bed to attend to it.

Hospital staff who informed the patient that heart problems left them unable to operate and relieve the pain from deformed hip replacements in a previous hospital stay, going so far as to prepare pre op before cancelling the surgery. Cruel choices!

All of a sudden they can operate on the current emergency with key hole surgery for an ailment complained of over a number of years until it became intolerable. Why it was left to become excruciating, before anything was done is a puzzle. Now the long long road to physical recovery must be endured. Cajoled by the bright young physiotherapist to try and walk on the sticks with the hips still left unrepaired, the patient was moved to asked “have you started shaving yet?” Telling the struggling aged patient to get on it “they’re only trying to help”, the young really have no concept of what “being old and frail” entails. To the average employee in a hospital, the patient is a unit of work. I was aware of how three doctors standing in front of the patient never once called the patient by name, as they discussed the technical aspects of the medical condition.

I brought to their attention my friend’s inability to sleep after I’d been told that a doctor the previous night told the patient “to be quiet and go to sleep” without offering a speedy method of medication to ensure this happened. The patient was in pain! Probably understaffed as I nabbed one poor nurse for three different needs of the three patients left fending for themselves in an otherwise unattended nurse’s station. In one instance there was “air in the tube” of my friend’s drip which emitted a beep which remained unattended until I went and found someone who fixed the problem, but who left the Nurse Alert button active until another nurse arrived three of four minutes later. All this is scary news for the uninitiated public in the way they’ll be treated in turn should they require the services of this particular busy suburban public hospital.

While I visited, twice the tray of food was dumped on the patient’s table without any effort to establish whether they could, actually reach the tray itself, open the soup tureen, cut their food, dunk the tea bag or open those pesky little sugar pouches. The patient in the next bed had Parkinson’s and couldn’t manage, as the other corner patient, had both hands bound in bandages. I was appalled at the lack of consideration for the ill people in assuming they could manage for themselves what we take for granted as reasonably fit healthy folk!

I was asked to sit and hold a hand in comfortable friendship without any chairs being provided for the visitors and it became an issue for my own legs, in that I develop massive pins and needles from the long unsupported sit on the bedside.

I learnt that my friend’s efforts to fill out Respecting Patient Choices, Living Will or Advance Directives had no power of persuasion with the medical staff. For years the battle to retain these important documents in a high profile manner within the Hospital Records has been an ongoing battle of wits between the diversity of staff and the patient. They’ve told the patient these papers have no validity in law for them and that they’ll decide whether they’ll resuscitate should it become an issue for them in the future.

I did explain that the question of resuscitation comes back to the doctor’s version of your quality of life. If they feel life is worth living although paralysed, incapable of speech, incapable of a degree of mobility, without a sense of dignity from their perspective as distinct from yours, having your tears dried, your bum wiped, your food fed off a spoon – all this ongoing without any chance of a recovery….Then yes, they’ll resuscitate! Because they’re not living the life they had destined for you! However they may not be Right to Life Doctors and may in fact be Right to Choice for the individual. It depends on the Russian Roulette one plays in the doctor you have standing before your frail sick body when the choices are made by them – and sometimes if you’re lucky, by you!

The experience of my friend witnessed first hand, encourages me to ensure I never allow myself to get to that place where I lose control over my dignity and my life. The future is a matter of choice.

In the same way we don’t gamble with our money, or if we do so, it is with care and consideration of the consequences, why don’t we have the same regard for our lives.

Recently I was listening to a doctor providing a patient with their options for treatment:

1 Do nothing, and allow us to palliate you (medicate to relieve symptoms, but not cure)

2 Do something and have an operation which will elevate the pain. However it will mean a very long recovery process due to lung damage. Incapacitation and long term care.

3 Do something and have an operation from which there was no guarantee of survival however everything that could be done would be done.

These were the options provided, but this is how the patient remembers it, after the event:

1 Family expected me to do something! “Doing Nothing” was not an option for the family’s consideration

2 No idea what the future holds! Still in the same degree of pain, but the focus of it has changed. After Care long term.

3 Why didn’t the nursing staff understand my intentions and allow me not to recover from the operation.

My response to concerns as expressed:

1 The family are not living your life. You alone, were given choices and you made yours accordingly. If you’d felt more strongly in your convictions you would have withstood your family’s pressure to yield to what they wanted for themselves, rather than what you wanted for you! (they want to keep you “living” regardless and you wanted (really) to “stay” regardless)

2 Having made your decision to stay you now need to focus on “getting your physical strength back” and perhaps a “after care hostel” would have the benefit of being waited on….with mobility tools like the use of a wheelchair, a realistic option in new surroundings.

3 Why didn’t “they” understand? Unkind to the nursing staff, who once you committed yourself to their care by agreeing to surgery would have done everything in their power to help you survive that trauma. The operating table should not be seen a convenience to die quickly when alternatives were offered. No one wants a death on their shift!

Bottom Line!

None of us know how we will react until the time comes for each of us to make decisions for our own end of life choices.

My friend was given choices and made them. Now to accept the consequences of those choices, gracefully.

————

The 2004 “The Sea Inside” the Spanish real life story of a 29 year fight through legal means, for the right to die, SBS Oct 6th, beautifully portrayed by Javier Bardem, showed me again why I believe in choice for the individual. That absolute dependency onothers for the most basic of services without any prospect of change ever, would be my strongest motive for accepting No 1 option back in my own home!

I received the following copy of an email, which clearly emphasizes that if you don’t know where you’re going, you’ll wind up somewhere else. Somewhere in a position that many of us would rather not be!

I know of a couple of people who feel really bad about their lack of comprehension about their parents end of life circumstances.  At stages they may find themselves at now in their own later years.    The reality was though that for many, insufficient parents lived a really long time after terminal and chronic illness set in to make it noticeable in society that they “suffered”.

In these days of technological wizardry all that has changed.

“”Thanks (name deleted) for your email by way of reply Re ‘birthday wishes”. I am forwarding the attached (article relating to England’s Advance Directives being legalised in England just to hand for your interest When my dad was dying from his stroke and subject to dehydration and starvation, I had an audience with the head nurse of the nursing home to voice my objection.
She went on to explain that dehydration and starvation was medically sanctioned and widely regarded as a painless and acceptable standard practice in the nursing homes and this was coming from a religious organisation run by the catholic church.

Predictably enough, I expressed disgust at this cruel approach and stated how I would not want to be subjected this bizarre undignified end of life demise and express that neither she or anybody else that I knew would either. When you see another human being, contrary to their prior expressed wishes, being subjected to this unnecessary and unwanted drawn out death bed type cruel treatment, out of sight, out of mind, behind closed doors and to be told that its standard practice in nursing homes, which are mainly owned and run by religious organisations, then there has to be something fundamentally wrong with the psyche of these misguided
religious institutions who in fact should be proactive in support of quick painless deaths considering how they are dealing with it on an almost daily basis.

Something to think about.””

Choice Comments: I agree with the writer

An article written by Ms Jill Singer in the Herald Sun Monday August 20, 2007 headed Living in a Sick World (pg 20) caught the eye of a relative who asked me to publish it on my website. I heard Pamela Bone speak the year before last and she is an excellent narrator because she herself is a trained journalist. I am asking for her book to be placed on my christmas wish list by my family….They won’t mind that one I’m sure!

It reads as follows:

DO you, or a friend or a relative have cancer, diabetes, alcoholism, drug-addiction, car­diac-problems, depression, psychosis, weight problems, infertility, haemorrhoids, hearing loss, arthritis or cataracts?

Are you getting old and frail, or caring for someone who is?

Are you pregnant or do you have a sick or premature baby?

Have you suffered injury in a traffic accident, playing sport or from a violent attack?

Are you grieving over the loss or impending loss of a loved one, or of your own looming and premature death?

It is one of life’s unavoidable challenges that if none of the above currently applies to you, one day it will.

And when it does you will enter a parallel universe and one where you discover what it is that you are made of.

I am currently reading Bad Hair Days, journalist Pamela Bone’s marvellous account of her experiences and reflections on life, politics, morality and disease. Pamela has multiple myeloma, a form of cancer that is treatable, but incurable.

Despite the physical and emotional upheavals it is causing her and her family, she has managed to write a riveting account of a life lived vi­brantly, responsibly, thought­fully and compassionately.

She quotes another wonderful writer, the late Susan Sontag: “The world of illness is a different world. (It is) the nightside of life, a more onerous citizenship. Sooner or later each one of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

As Pamela Bone notes, she has become a citizen of that other world. It is a world with no real happy endings, just the flnalisation of suffering and indignity.

The family of 91-year-old Rachael Williams, who was assaulted in her home last week, say they don’t under­stand her reluctance to go into aged care. I do.

Her home is her world and she is not yet ready to enter “that other place” as Sontag put it. Rather than deny this lucid woman her independence, they would be doing her a greater favour by improving her home security.

Another world I was recently forced to enter was that of neo­natal intensive care. How to describe the experience to those who are alien to it?

You spend your days with your heart in your throat, watching a tiny baby as it struggles to breathe and grow. There are tubes and beeping monitors everywhere.

For those who are healthy, vibrant and worry-free, the world of illness might seem like a place they will never visit.

If they do, it is usually because a stricken celebrity might reluctantly take them there, such as Kylie Minogue, Olivia Newton-John, Delta Goodrem or the late Belinda Emmett.

I had to laugh when I read Pamela Bone’s musings on the nature of illness and pub­lic empathy.

Breast cancer, she notes, has become quite socially acceptable, whereas there is still unreasonable shame attached to cancer of the rectum, bowel and other embarrassing spots.

This happens to be National Pre-Eclampsia Awareness Week

Pre-eclampsia is not what you would call a sexy illness, but it did make the news briefly when the ignora­muses at Big Brother set up poor Kate Gladman with a fake baby to “mother”.

Ms Gladman lost her own baby at 31 weeks’ gestation because of pre-eclampsia. It causes the deaths of 200 babies a year in Australia, the premature birth of many, many more and Mils 50,000 women a year globally.
What is most alarming is that the precise cause remains unknown.

If you’d like to know more, the website for Australian Ac­tion on Pre-Eclampsia is www.aapec.org.au.

And for those many, many parents out there struggling with the highs and lows of having a premature baby, I’d recommend L’il Aussie Prems set up by Julia Toivonen at www.lilaussieprems.com.au.

When you become a citizen of that other world, it always helps to meet fellow travellers. contact: jsinger@bigblue.net.au

I thought how clever Mr Brumby was as the newly elected Premier in heading off a Private Member’s Bill by Candy Broad, regarding the legalization of abortion into the Victorian Statute Books.

Very deftly he promised her the Government would hold an “inquiry” to look into all aspects of the issues surrounding abortion. I thought then, Mr Brumby has done Mr Bracks proud in his retaining the strong conservative style government which has become the order of the day, both Federally and State wide.

With the footwork still in tune to the music of the Christian Conservatives, I hold no hope of any resolution coming to the fore with regards voluntary euthanasia legislation…..

A distraction is to avoid the consciousness of the passage of time according to one Gertrude Steiner and Mr Brumby certainly managed to distract Ms Candy with a promise blah, blah, blah!!

The only sense that is common in the long run is the sense of change and we all instinctively avoid it…..unfortunately the sick, frail and chronically ill don’t have the distraction time for avoidance as their luxury item. They live in the here and now!….They are sick and suffering today, this month, this week, this hour…….palliative care does not already bring them either relief or peace of mind….for some, only death can do that for them…..

I wonder how the Dying with Dignity Victoria plans will go for next year’s Private Member’s Bill in which three opposing Representatives of the Party Systems, joined together and promised they’d promote the dignity of choice for end of life decisions.

I honestly have problems with understanding the morality of politicians who on one hand deliberately create disharmony between “old” Australians, and our newest Australians because they’re from war torn countries and may have a violent disposition. That many are black and Muslim would have nothing whatsoever to do with the Government’s current statements making headline news around the world!!.

And yet these same sanctimonious hypocritical, mainly Christians law makers would deny a sick person a quick and painlessly legally obtained death. It defies logic that a frail sick elderly person’s life is seen as so much more precious than that of a black Muslim, of African or Middle Eastern persuasion.

I was heartened yesterday to learn that both Liberal and Labor Members are appalled at the lack of Christian charity with our newest migrants. Had the war of words been against the Jewish community instead of the Muslims, Discrimination would be screamed from the rafters, but then the majority Muslim are usually a more gentle peace loving community than many Australians would care to admit to.

I just know with every fibre of my being why I cannot believe in the existence of a “God of Love, Mercy and Infinite Beauty when I am surrounded by the ugliness of greed and hypocracy.

A very sick friend said to me just the other day…”.I want to die!” She doesn’t want to live in her moment! Nothing she could see around her inspired her to want to stay!

Another friend loves it all and can’t bear the thought of leaving it.

Governments need to legislate to cater for the differences, both in cultures and philosophies in life. Governments need to regulate their societies less and with more depth of thought for those laws they do introduce.