Should the Government or the Patient Decide What is Medically Necessary

[phil19034]

The Alfie discussion boils down to who should make the decision to terminate medical care to a patient. Should it be the Government or should it be the Patient and/or their family? Which is more ethical? Who do you want making your decisions when you or someone you love is on the deathbed?

Plain and simple… it should be the family.

 

[_Ruby]

Irrelevant. We are not talking about depressed patients who want to skip on a plane to Dignitas.

This was a 22 month old child. One who could not live without extraordinary measures.

The judge actively disagreed Alfie’s life didn’t have dignity… He said his visit to Alfie on the ward showed how loved and well cared for he was:

''In her evidence the Guardian expressed her clear support for the Trust’s application. Her view had been foreshadowed in her report. The evidence, she told me, had served ultimately to confirm her recommendation. She stated that in her view Alfie’s life now lacks dignity and his best interests can only be met by withdrawing
ventilation. This evidence from an experienced children’s guardian requires to be considered very carefully. I have done so. With great respect to her I disagree with her view on Alfie’s dignity. As I had promised the family I attended the PICU at Alder Hey to meet Alfie. I was greeted not merely with courtesy by the parents and a number of aunts and uncles but with a sincere and genuine warmth. I was and remain grateful to them. Alfie’s pod in the unit is large, comfortable and he is surrounded by some of the world’s most up-to-date technology. F was, in my presence, assiduous to Alfie’s care. He is entirely besotted with his son. M, both
parents agree, is far less involved in Alfie’s practical care and less confident. Hercontribution, in my assessment, is of an entirely different complexion. She has, if I may say so, a zany and delightful sense of humour entirely free from self-regard or pomposity. Her love for her partner and her son was obvious. The atmosphere around Alfie was peaceful, dignified and though some might find it surprising for
me to say so, very happy. The primary engine for all this is Alfie’s mum.

Alfie’s bed is festooned with toys. His walls are plastered with photographs and his many supporters have delivered a variety of football shirts to him. One, in particular, was signed by the entire Everton squad specifically for him.

Supporting all this is the diligent professionalism of some truly remarkable doctors and the warm and compassionate energy of the nurses whose concern and compassion is almost tangible. All this creates an environment which inherently conveys dignity to Alfie himself. In my judgment his life has true dignity. The far
more challenging question is whether and if so how that can be maintained.’’

 

[phil19034]

I hear the arguments on both sides. Personally I do not believe extensive medical training Is needed to make many of these decisions. A degree in treatment of diasease doesn’t preclude the rights of the person being treated, or family on their behalf, from making decisions if they are capable. However in some extreme cases I think it can be warranted for providers to intervene, but I tend think those would be extreme and relatively rare. Patients aren’t perfect, neither are physicians. I tend to think Rights>Titles

Right. Plus, in complicated situations there are Bio-Ethics consultants (and Catholic ones at that) who can be consulted by the family.

 

[phil19034]

JanetF:

Because he would have received the exact same care at the other hospital that would have taken him, but transporting him to that hospital would have been risky.

Still should have been parents right to take that risk.

Agreed, esp when the hospital he was at was ready to let him die. If the hospital didn’t want him transferred because they were planning to do everything to keep him alive, then it would not have been worth the risk.

But since the hospital was ready to let him die, then the parents should have been allowed to take that chance.

 

[Shakuhachi]

But since the hospital was ready to let him die, then the parents should have been allowed to take that chance.

But is was precisely because they believed letting him die naturally was best for him and the ethically appropriate course to take since there was no possibility of cure.

 

[phil19034]

because being starved to death is not dying with dignity.

Unless I’ve missed something, there was no indication that his body could not process the food and water he was receiving via the feeding tube. If that’s the case, the feeding tube should never be removed unless the body can no longer process the food & water.

 

[phil19034]

phil19034:

But since the hospital was ready to let him die, then the parents should have been allowed to take that chance.

But is was precisely because they believed letting him die naturally was best for him and the ethically appropriate course to take since there was no possibility of cure.

But that’s NOT their role. A doctor’s role is to do everything possible to keep someone alive. It is the role of the religious leaders and family (next-of-kin) to determine when it’s time to let someone die.

Of course, Doctors can & should give their advice. But it’s not their role to promote death.

 

[godisgood77]

But is was precisely because they believed letting him die naturally was best for him and the ethically appropriate course to take since there was no possibility of cure.

I think the Dr and hospital have the right to stop administering treatment if they deem that appropriate from a medical standpoint… I’m not sure there was any life saving or life improvement treatment happening … only sustaining, so that is what makes this case so difficult.

Ultimately, if the Dr decided to stop, the parents should have been able to go elsewhere, no questions asked.

Hope Alfie is enjoying his eternal reward

 

[Shakuhachi]

A doctor’s role is to do everything possible to keep someone alive.

Not so. Not always. Professional judgement comes in to play for appropriate medical interventions.

 

[phil19034]

phil19034:

A doctor’s role is to do everything possible to keep someone alive.

Not so. Not always. Professional judgement comes in to play for appropriate medical interventions.

No. Taking someone off life support should be the discussion of the family. When a doctor or hospital says they can do no more for a patient and it’s time to let them die, the family should not be stopped from trying to move them to another location.

I’m not saying a doctor needs to be forced to actively continue working on someone when they can’t do anymore.

And I’m not saying that a person must be kept on extraordinary life support. But there is zero reason to ever remove a feeding tube unless the person can no longer digest the food and water.

It is my understanding that in this case, the feeding tube was removed. No where, have I read that he could no longer digest the food and water.

A feeding tube is palliative care.

 

[Pup7]

This was not a government decision. (sigh)

Am I the only non-American who knows this? Feels like it.

 

[Pup7]

A feeding tube is palliative care.

It’s actually not always palliative care.

No where, have I read that he could no longer digest the food and water.

That would be in his medical record, which the NHS has no reason to completely release to the public. So in reality no one has any idea of what that status was.

 

[Pup7]

Ultimately, if the Dr decided to stop, the parents should have been able to go elsewhere, no questions asked.

Even if it killed the patient?

Does no one get that the releasing facility is ethically, legally, and medically responsible for that patient until he arrives at the gaining facility? This is true whether you’re in the UK or the US.

 

[Shakuhachi]

It does puzzle me how the Hospital took custody from the parents.

 

[phil19034]

It’s actually not always palliative care.

It is palliative care if the person can digest the food & water.

 

[Pup7]

Not always. No it’s not. It depends on a multitude of factors. And as I said, you don’t know his entire status any more than I do.

 

[phil19034]

godisgood77:

Ultimately, if the Dr decided to stop, the parents should have been able to go elsewhere, no questions asked.

Even if it killed the patient?

Does no one get that the releasing facility is ethically, legally, and medically responsible for that patient until he arrives at the gaining facility? This is true whether you’re in the UK or the US.

If the hospital / or doctor has stated that they can do nothing more except let the patient die. Then, there is no reason next-of-kin cannot take a chance to move the patient, even if it could kill the patient. Esp if the patient is going to die where he/she is currently located.

 

[Pup7]

How would you pay for that, exactly?

That’s going out AMA - against medical advice - both here and there. The NHS would not pay, and no insurer here will pay for AMA either.

And again, even if the child suffocated to death on a flight, you’d be ethically okay with that? As a medical professional, I would not.

 

[ConfusedLucy]

I imagine a well meaning relative who moved the patient could lead to the patient having a much nastier death than if the patient was managed in hospital by an appropriate team.

 

[phil19034]

I imagine a well meaning relative who moved the patient could lead to the patient having a much nastier death than if the patient was managed in hospital by an appropriate team.

Yes. This is very possible. However, taking the choice away is worse. When people have the choice, they usually take the time to make the best decision (not always, but usually). When people don’t have a choice, they spend time fighting instead.

Also, when there is lack of choice, it allows more corruption. Personally, I would always rather have the people who love me make decisions for me, even if they make a mistake, because I know they are doing everything out of love for me & my wishes.