When letting go is the hardest thing to do

Nick says:

11:50am | 21/08/11

good on you. I think I’d rather die on my own terms, too. When i’m too old, to useless to do anything worth doing i’ll make my way out into nature with a few pills and find a nice place to watch the sun set and slip into oblivion.

acotrel says:

05:14pm | 20/08/11

@Rio
’  a huge chunk of our health care cost problems would be solved if people would do the compassionate thing and give up the fight ‘

We chuck people onto the workplace scrap heap at age 45 these days.  Perhaps we should just bump ‘em off?  By that time their kids should be able to look after themselves and start contributing to increasing the wealth of us better people..  We’d have fewer arguments with management because people would be dead before they had enough smarts to argue.
On a slightly different aspect.  As a kid I talked to a few old guys who’d been in the trenches in WW1.  I regret that I haven’t taken the interest to pursue that avenue more.  Their take on the world and it’s stupid politics was well worth listening to.  Oldies still have a lot to contribute to kids who think they know it all!
A few of the things they told me have dramatcally shaped my outlook, and clued me in, on the way we are manipulated by the self-serving amongst us.

Vicki PS says:

11:16pm | 20/08/11

ICUs are not and never were intended for this kind of scenario, but more and more they are being clogged up, not by the patients themselves, but by doctors who merely want to take the easy way out and pass the problem on.  ICU care does absolutely nothing to improve the prognosis of a person in the end stage of a terminal illness: it merely serves to make their last hours and days more painful and depersonalised.  To me, it is the worst kind of dishonesty to allow the family of a person in this situation to believe that being sent to ICU is “doing their best”.  Honest and thoughtful doctors, like Ranjana, would be aware, too, that most often it is left to a nurse to be honest with the patient and/or family who are being besieged by eager medicos, and tell them, “Look, you don’t have to have this treatment if you don’t want it.”

Daniel says:

12:53am | 21/08/11

@Rio - Cost doesn’t come into it and isn’t the issue. The issue is suffering for no good reason, I’m not sure if you have ever seen anyone close to death or not but I remember visiting my grandfather before he passed away. He didn’t recognise me and when my Mum told him who I was couldn’t even remember that he had a grandson called Daniel also at that point he was just skin and bones. This was a man of 82 who just a couple of months before was still able to play/walk 18 rounds of golf, sail a small boat by himself and had full use of his mind.
Our family was given the choice of issuing a DNR order and although it wasn’t an easy thing to do we agreed to do it, this was the last gift we could give to Grandpa.

jeffrey says:

11:24am | 23/08/11

hi all,

I worked for 3 years as a proffesional respite worker, in that time i worked with nurses, doctors and paltive care teams. This is my understanding in relation to this article, these are based on events and stories i have heard second hand as well as a small ammount of training.

@vicky unfortunately if a doctor doesn’t have written proff like a NFR then i belive they are obligated to do all within thier power to save the paitent, even if that goes against the patients will.  Otherwise they open themselves up to law suites. What really should happen is an appropiate palitive care plan should have been developed including a NFR paper, which sate all the clients wishes and is a legal document.

@Gregg and Nick, what you are talking about is currenly illegal in Australia and if you didn’t succeed you would be placed in the health care system and hvae someone else have your duty of care. Interestingly it is illegal to force feed anyone who doesn’t wish to eat even if they are under your duty of care.

@ acotrel, what i think Rio was trying to say (and correct me if i am wrong) is that we as inderviduals should be given a choice. I have met many great people who were ready to die, but due to the current healthcare system had to sit in pain for months before they passed away. where as if they were given the choice would have passed away in thier own terms.

acotrel says:

04:58pm | 20/08/11

@Mayday My mother lived near a nursing home which my sister worked in while she was alive.  My sister dobbed them in to the Dept. of Health, and the nursing agency forewarned the home,  what was happening, so the place was cleaned up in time for the vist.  My sister knew when she did that, she’d never be employed as a nurse again.  My mother’s neighbour across the road , knew what that nursing home was like.  She asked my mother ‘if you stopped eating, would you die? ’ My mother answered ‘yes, you would’.  And that’s exactly what the old lady did - just stopped eating to avoid going into that disgraceful nursing home situation.  So the question might be - ‘who is responsible’?
I suggest it’s pretty harsh to treat oldies who’ve usually contributed to the max, in the way that a lot of these privately owned and opportunistc establishments often do!  It’s probably what could be described as a national disgrace.  Even with quality management systems in place, supposedly audited, and even certified.  The appalling things still happen.  To my mind it is still all part of the one culture - THE SYSTEM RUNS ON BULLSHIT, AND IT IS CORRUPT! I know entrepreneurs are in business to make a dollar, but this .....? It’s just a bit too much!

Mayday says:

08:56am | 21/08/11

Acotrel since mums passing I have heard many negative comments about this particular nursing home and others in my area.

Thank goodness people like your sister spoke up, the Nursing Home Industry will get bigger with our ageing population and all staff need to be skilled up and better trained.

The SYSTEM DOES RUN ON BULLSHIT and you are so right, people running these places see easy dollars for minimal input.
Many of mums friends visited her in the home and they are all wanting to euthanase and have control over whats remaining of their time and I for one have joined them in that quest.

The Nursing Home industry is just a money making machine with little thought for the people who need care.

marley says:

01:36pm | 20/08/11

@St. Michael - Well, I will say that the doctor shows considerably more human compassion and empathy than you do. 

In the absence of a DNR order, it is the next of kin, not the doctors, who ultimately decide whether further intervention should be attempted in a case like this.  The author gave the attending physician her advice in the first instance, but the children countered it.  And the attending did as he was instructed, and kept the old gentleman alive until they could get there. 

And then she and the attending did their best to counsel the children, as was their duty.  But in the end, the decision had to be the family’s,  not the doctors.  What would you have the doctors do? Ignore the next of kins’ instructions? 

And when it was all over, what good does it do to tell a family grieving its loss that their decision was the wrong one?  How is it following the Hippocratic oath to add guilt to their burden of grief?

I’ve been through this situation with my own father.  Unless you’ve gone through it, you have no idea of the mess that emotions,  memories and regret make of your decision-making processes.  My sister and I made a different decision in our father’s case, but I know what a difficult decision that was for us both. 

And that’s what the article is about - how difficult these decisions are, and how easy it is to make the wrong one when the decision affects someone else’s life.  And it’s a warning to all of us to have our wishes laid out in black and white, because otherwise the decision will not be in the hands of the medical experts, but in those of people caught up in emotional vortex and not thinking clearly.  And there won’t be a damn thing the doctors can do about it.

Mayday says:

01:46pm | 20/08/11

Back off “St Micheal” @ 11.43
Did you miss this part of the article… “We tell the son and daughter that they need not bear the burden of withdrawing care, but permit us to do what is in their father’s best interest. We tell them that intensive care will merely prolong their father’s inevitable demise.”

They really couldn’t say much more and to follow your suggestion of
responding with “No, actually I think you prolonged his life and his suffering against what he probably wanted and in the face of clear medical data that he wasn’t going to survive.  You shouldn’t have done that to another human being.”  This is wrong and to suggest this is truly sick, these people were grieving and its not the doctors position to take on a morally superior tone as you have!!!!

I think Ranjana wrote the article to explain how the system works and to warn the rest of us of what happens if your wishes are not formally stated in writing.

As for it being “a low attempt at a public rationalisation” methinks you have completely missed the point.

stephen says:

08:03pm | 20/08/11

Imposter, St. Michael ?
Doesn’t tally with you other stuff.

Gregg says:

09:16am | 21/08/11

@ the Fake Saint
” Why exactly did you write this article? Clearly you don’t feel bound by patient confidentiality anymore given you’ve now broadcast details of the case to the entire country; why did you not tell the children exactly what you thought of their decision at the time?

They weren’t your patients.  If you felt that strongly about thi issue there was nothing to stop you responding to their question “No, actually I think you prolonged his life and his suffering against what he probably wanted and in the face of clear medical data that he wasn’t going to survive.  You shouldn’t have done that to another human being.”

You clearly did not read what Ranjana’s views were and how she was not in the position to see them followed through with.
Very weird indeed!

Leah says:

12:26pm | 21/08/11

St Michael, don’t be a bastard. I would hope most doctors are as compassionate as this one.

Allowing suffering is not “doing” harm. Doctors “allow” suffering every day because they know it will actually make the patient better. A doctor allows a patient to suffer when they go through chemotherapy. So allowing a patient to suffer is not breaking the hippocratic oath of “do no harm”. She did not do anything ‘wrong’. In fact if she had gone against the next of kin’s wishes she would have been in all sorts of legal trouble. Doctors are there to do their jobs and unfortunately part of their job entails doing as the next of kin requests. They are not there to save the world according to their own morals (as much as that might make things easier).

Besides, what would the doctor achieve by telling the children they made the wrong choice? That’s not going to erase those 6 days.

St. Michael says:

12:49pm | 21/08/11

@ marley:

“I’ve been through this situation with my own father.  Unless you’ve gone through it, you have no idea of the mess that emotions,  memories and regret make of your decision-making processes.”

Well, gosh, marley, thanks for resorting to the “you haven’t been there, you don’t know what it’s like” defence.

Unfortunately for your argument, I have been there.  And I do know what it’s like.  And I would have given anything to keep my significant relative from remaining in a vegetative state for seven straight years because no doctor had the moral courage to say “Look, he’s not going to make it.  You really need to consider pulling the plug and stop leaving him here.  You can’t imagine the suffering he’s going through right now.”

Like I said: the Hippocratic oath demands do no harm to your patients.  The children are not the oncologist’s patients.  The oncologist is also not their psychiatric counseller.  You seem to think that “sensitivity” excuses leaving a man suffering for six straight days when any humane person would put down an animal in a similar state.  I suggest you rethink the consequences of what your moral cowardice amounts to.

The decision is always going to be heart-wrenching, whichever way you go.  So make the morally right one, the one that doesn’t torture another human being that you loved for the last days of his life.  In this instance, for this doctor, that was a simple moral decision, and she chose not to make it.  Thus the public expiation.

marley says:

02:39pm | 21/08/11

@St. Michael - Your entire argument about the doctors’ lack of moral courage is based on the assumption that it was her, or her and her colleague’s, role to decide whether the gentleman should get further treatment.  I strenuously dispute that assumption. 

Had the gentleman had an NFR, she would have been ethically bound to carry out her patient’s instructions.  In the absence of an NFR, and with her patient unable to provide instructions, she was ethically and no doubt legally bound to carry out the family’s instructions. 

The doctors had a responsibility to lay out the situation clearly, which, if you reread the article, they did.  But it could never be their responsibility to take the decision out of the hands of the family.  The author and the attending physician told the relatives what the situation was.  The relatives had a clear choice - and in my view, made the wrong decision in insisting on keeping the old gentleman alive.  But it was their choice, not the doctors’, to make. 

And, once the family had made that decision, the doctor’s only moral, not to mention legal, choice was to accede to the wishes of the family. 

There was no moral cowardice on the part of the doctor here. Perhaps there was on the part of the family - perhaps they were unwilling to make such a decision - but it is simply wrong to lay the failings of the family at the feet of the doctor.  She did what she could, but I can’t see how she had any legal or ethical choice but to obey their wishes. 

And I know how hard it was for the family to make that decision, because unlike yourself, I had to make it.  When my father fell ill, my sister and I asked what the prognosis was, and were told he was unlikely to recover.  But it was our decision, and no one else’s, to “pull the plug.”  As it should have been. It is simply not the doctor’s role or responsibility to make decisions the family cannot or will not make. 

And that is the whole point of this article.  That, in a situation of this kind, the doctor may know what the right decision is, but cannot make it.  That’s up to the patient and to his family.

St. Michael says:

06:28pm | 21/08/11

“And, once the family had made that decision, the doctor’s only moral, not to mention legal, choice was to accede to the wishes of the family.”

Who was the patient, marley?
And would you like to cite the legislation you’re referring to when you say it was the doctor’s only “legal” choice?

As for the folks who reckon the doctor was “compassionate”—well, I hope none of you get a doctor who’s so compassionate they have sweet little pangs of guilt when they do their rounds and see you suffering and unable to say so.  I hope you don’t get a doctor so compassionate and so weak-willed they won’t say “Boo” to the family when they make a decision to continue your needless suffering.

“We try some more.”  What the hell does that mean? Did anybody ever stand up robustly and say “Look, you are really prolonging your father’s suffering.  Medically there is nothing we can do for him and nothing short of Jesus Christ showing up down here is going to bring him back.  And even if He did, your father would be a vegetable.  Could you please look very carefully at your motives in making this decision?”

I don’t see that here.  I don’t see a doctor in substantive defence of their patient.  I see a doctor going through the legal motions because she lacks sufficient moral courage to give her forthright view to the children.  I see a doctor whose courage to say the obvious thing drained away after her patient wasn’t conscious enough to call her on it.

You guys can slice it any way you like, but the doctor was morally wrong here.  As were the children—but the doctor had a chance to do the right thing, and chose not to.

marley says:

08:15pm | 21/08/11

@St Michael - well,  you and I see it differently. l see a doctor doing her best to get the message across to the family and the family refusing to hear the message.  How is that her fault?  You have to know, as well as I do, that people do not hear what they don’t want to hear.  And in the end, the choice was theirs, not hers. 

And, looking at the NSW pamphlet on “Guidelines for end-of-life-care and decision-making”  it states very explicitly that when the patient cannot state his wishes and the family and medical personnel disagree, medical care should continue until the issue can be resolved with the family. 

Bottom line:  the decision can’t be up to the doctors alone, and if you don’t want this sort of thing to happen to you, don’t leave it up to your family either.  Make your arrangements.

Michael says:

01:13pm | 20/08/11

St Michael- part of our job is to care for the relatives who will remain, as well as the patient who will pass away. There is no need for the cruel response you suggested. Yes, it would be nice if they had let him pass earlier, and yes it would have been nice if our doctor had been more forceful. But explaining to them, in their time of grief, that they caused insufferable pain to their father in his dying days seems a little heartless don’t you think? As you said, ‘first, do no hamr’.

St. Michael says:

12:43pm | 21/08/11

“But explaining to them, in their time of grief, that they caused insufferable pain to their father in his dying days seems a little heartless don’t you think?”

Sometimes the truth is heartless.  It doesn’t make it not true.  And doesn’t remove the need to say it so their own children don’t wind up doing it to them.  Like I said, he’s not your patient, and you are not their psychologist or their priest.  And if you let them walk away without knowing that, they will wind up telling other people it’s the right thing to do because they did it to their own father.

St. Michael says:

12:55pm | 21/08/11

....aaaaand did you do anything to stop it or suggest to people that maybe treatment was futile and prolonging the suffering needlessly?

marley says:

07:04pm | 20/08/11

No, wait a minute here - the doctor might suggest an DNR/NFR, but it is not the doctor’s business to ensure that one is in place. What are your suggesting - that she shouldn’t treat elderly patients that don’t want one?

She made no mistake - if the gentleman chose not to do a DNR or NFR or whatever, that was his choice, not his doctor’s. To say otherwise is to require of the doctor a responsibility she shouldn’t have.  And if the family then chose a different path than his doctors recommended, well, that is not in any way her issue.

The whole point of this article is to have people think a bit more deeply about their parents’ situation, and their own.  That you should focus on the doctor’s role, and not that of the real decision-makers - the patient and his family - is a bit of a worry.

Likes Joining Dots says:

02:38pm | 21/08/11

Well said marley.

James and St Michael appear to be transferring the legal, moral and ethical responsibilities onto the doctor rather than the real decision makers - the patient and his children.

St. Michael says:

06:18pm | 21/08/11

@ Likes Joining Dots: how about you cut the straw-manning for a second there, hoss?

I said the doctor was a moral coward because she didn’t go on to tell the children what she thought of their decision to continue the suffering of the the father.  She didn’t tell the truth as she saw it, which was that an old man was left for six straight days to suffer needlessly.  We wouldn’t do such a thing if it were an animal that were suffering.

I *did not* say the doctor was a moral coward because they didn’t pull the plug themselves.  That’s you straw manning.

I focus on the doctor’s role because the doctor was in a position to know what her patient was going through and what she could have advised the family to do.  That is clear from the fact the doctor “felt a pang of guilt every time I entered the ICU”—her words, not mine.

I’m contemptuous of such pangs of guilt when nothing is done to deal with it other than wringing one’s hands in public over it, as the doctor has done here.  If you do something you thought was wrong, deal with your own issues of conscience, don’t come crying to the public for sympathy or forgiveness.  We do enough of that crap in society today that we don’t need doctors doing it as well.

This was a failure to robustly advocate on behalf of the patient in accordance with the Oath’s requirement to do no harm, and in keeping with the doctor’s own duty to look after her patient.  You tell, AtM.  Put yourself in that old man’s position, where he thinks the best of his children and thinks they’ll know what he wants.  Then try and imagine spending SIX STRAIGHT DAYS SUFFERING BEFORE YOU DIE.  And all the while looking, pleading, silently at the doctor who does the equivalent of sitting with hands folded and mouth wired shut and hides behind the justification that the family has to choose.  Even if the family had control, the old man was still her patient.

Kate says:

07:34pm | 21/08/11

@James, the problem there is if relatives then protest that “the doctor must have made him do it” and “he would never sign a DNR of his own accord”. Heaps of opponents of euthanasia use this excuse all the time, as if doctors are wandering around hospitals looking for people to coerce into signing DNRs.
Personally, I would prefer to hear the blunt truth from a doctor in this situation, but obviously it falls on deaf ears for some.

egg says:

01:03pm | 22/08/11

@st. michael, get over yourself.

for one thing, people have already pointed out why your “do no harm” angle is completely ambiguous & often ignored to the benefit of the patient. so leave that alone, we heard you the first time and it’s STILL a poor argument.

second, you’ve been through it yourself. fantastic! glad you gave shit to the person who brought it up, then played your own tiny violin for a few minutes just so we all knew your story. shame you can’t take your own advice about keeping your sob stories to yourself…

third, you cannot expect a doctor - who is a human being themselves, and often has their own problems to deal with - to take on the responsibility of teaching others right from wrong. that doctor went through an experience, and tried to make it as comfortable and pain-free for not only the patient (within the confines of the law), but also for the GREIVING FAMILY of the patient. they tried their best to explain what would be the best option, the family refused, the doctor felt bad. i’d like to know what you think could’ve been gained by harassing the family of someone who just died, all because in a time of extreme stress & emotional pain, they didn’t make the decision you would’ve.

i agree with legalising euthanasia, but seriously, your attitude is just sick. understand that not everyone has to do things your way to be right.

St. Michael says:

06:21pm | 23/08/11

“second, you’ve been through it yourself. fantastic! glad you gave shit to the person who brought it up, then played your own tiny violin for a few minutes just so we all knew your story. shame you can’t take your own advice about keeping your sob stories to yourself…”

I didn’t play the “You haven’t been there, you don’t know what it’s like” card first, egg.  Marley did.

What a pity you can’t handle brutal truth.

St. Michael says:

06:24pm | 23/08/11

Also: “like to know what you think could’ve been gained by harassing the family of someone who just died, all because in a time of extreme stress & emotional pain, they didn’t make the decision you would’ve.”

Short answer: so they don’t keep someone suffering for 6 straight days.

And then get called on what they did so they can teach other people that it’s the wrong decision.

Only idiots prefer saving someone’s feelings to telling the truth.

Likes Joining Dots says:

02:57pm | 21/08/11

Demoman, good move. It’s an ace up your sleeve to know that if a decision has to be made you are going with, rather than against his wishes. It really is a win-win situation, you don’t have to second guess and your old man gets his say - even though it can be a difficult topic to raise.

Fiona says:

08:03pm | 20/08/11

Acotrel, seeing the emotions that surround dying family members is always difficult. I really feel for doctors who have the unenviable job of telling people bad diagnoses and discussing where to go from there. This article highlighted how important an advanced health directive (or NFR where appropriate) is to avoid this type of scenario,which is all too common unfortunately.I am not there with my parents at this stage, but it has been discussed (for all of us).
You shouldn’t have guilt about what she wanted, it was her life after all.

acotrel says:

07:14am | 21/08/11

Fiona, when my mother spoke to me I listened.  It was her decision, and she was of sound mind when she made it.  She knew very well when she had had enough.  She didn’t want to be pulled around, prodded and poked, and go through the pain and uncertainty of rehabilitation.  She also knew very well that she probably wouldn’t survive an operation. And the doctors had made that clea r to me I got on the train from Benalla to Melbourne on her birthday which was the old Empire Day, to visit her in palliative care at the Alfred.  I made sure that her pain treatment was adequate.  I talked to her,  told her I love her, then left and had the worst train trip home of my life.  She died two days later at 6.30 in the morning.  Unusually I woke with a start at that time, and I knew what had happened.  I got the phone call ten minutes later.

Fiona says:

09:29am | 21/08/11

Acotrel, I remember when my grandmother (dads mum), was very I’ll from cardiovascular disease, her and dad had one last conversation where he told her that she didn’t have to hang around anymore if she didn’t want to. She died the next day, in her sleep, for which we were all relieved. My mums mum similarly went in her sleep (stroke), for which we were also grateful, as she had Alzheimer’s and was an unhappy, frightened old woman. I only hope I face black and white decisions with my own parents.

stephen says:

12:05am | 21/08/11

You’ve prepared for an entirely seperated emotional response.
Fine.
And do you have any memories ?