Friday, May 20, 2011

End-of-life decision rests with family, not doctors

Rosie DiManno, a regular columnist with the Toronto Star, wrote an excellent column that was published on May 19 concerning her experience with the death of her father.

The importance of DiManno's column is how it shows that the medical dimension is important when considering end-of-life medical decisions, but it is not the only factor. Families have should have the right to consider the options and make decisions based on their values and personal experiences.

DiManno's column has much to offer to the debate over the Rasouli case and thus I am reprinting it here.

Dimanno: End-of-life decision rests with family, not doctors

When my father was in an irreversible coma, a neurologist broke the news bluntly and briskly. There’s no brain activity, she said. There’s no hope, she said. End it now.

What she meant was, remove the life support.

But I did not believe her. When I touched my father’s gangrenous foot, he flinched.

"That doesn’t matter," she said, arguing that the movement was a muscle reflex. I was convinced my father felt pain, which indicated some level of brain function, however minimal. And I would not hurry my dad to death, nor sentence my mother to a lifetime of guilt by allowing her to sign the consent form that would permit ICU personnel to shut off the machines.

The doctor was displeased with what she clearly viewed as recalcitrance on my part. She mumbled something about physicians having the right to make these life-or-death decisions.

I went to the chief of the ICU and begged: Please don’t do this, not yet.

He looked over the brain scan imagery. "There's some activity here still," he concluded. "We won't remove the life support until the family agrees it's time."

The chief assured me — from his many decades of critical care experience — that I would sense when that time came; that my father’s failing body would let it be known.

I took that on faith, and he was right.

Two weeks later, after other complications had developed, my mother and I concurred that time had come — though the burden of execution, as I felt it, will never be lifted from my conscience.

Most people who find themselves in this horrible position — making end-of-life decisions for a loved one — do know when it's time. For those incapable or unwilling to let go, perhaps because they disagree with the assessment of expert physicians — there must be some procedure for appeal that respects all parties, some higher court of consideration and review that can weigh the evidence in as nonconfrontational a way as is possible under such distressing circumstances.

It can't be a unilateral decision by the attending physicians. They don’t have the right, morally. They shouldn’t have the right, legally.

That unconscious person is more than a patient. He or she is a human being for as long as a single breath can be taken, even when a machine is doing the breathing.

No doctor is God, though far too many seem to think otherwise. And yes, the ethical dilemmas are profound in a modern world where medical advances have blurred the definition of life, where debate rages over the difference between brain-dead and heart-dead — a distinction poorly understood by many who might some day have to confront the question of organ donation. It is not as simple, or obvious, as we have been led to believe.

The huge ethical quandary surrounding end-of-life decisions is now in the hands of a three-member Ontario Court of Appeal panel. Judges heard arguments Wednesday on whether the law requires doctors to obtain consent before withdrawing life-support from an unconscious patient or if they are entitled to make unilateral decisions to “pull the plug’’ — a grotesque expression — when families are vehemently opposed.

The matter arises from a specific case — a 59-year-old unconscious patient at Sunnybrook Health Sciences Centre. The man’s wife (herself a doctor) and two children are insistent the man can hear and understand their voices, to the extent he would somehow make them understand if heroic measures at sustaining life were not desired.

His doctors claim the man is in a permanent vegetative — another grotesque term — state, nothing more can be done, and their medical judgment compels them to remove the ventilation keeping the patient alive.

Ontario, unlike some other jurisdictions, has a venue for weighing such delicate conundrums. The Consent and Capacity Board is a provincial body that mediates end-of-life disputes so that doctors can’t proceed in the face of opposition until all parties are heard. But the two Sunnybrook doctors are seeking the right to go ahead and withdraw life support without first seeking permission from the board. A lower court decision has already ruled the doctors can’t unilaterally stop treatment.

For the life of me, I can’t understand the doctors’ recalcitrance. I’m deeply disturbed that any physician would presume superiority for deciding what’s in a patient’s best interest and attempt to deny the family even a vote. An unconscious patient needs advocates, not a summary death sentence.

Patients have rights, even those barely clinging to their mortal coil. Families have rights, and that includes resisting the bullying of doctors who always profess to know what’s best, as if they were infallible. They’re not ethicists, they’re not priests and the existence of life, however feeble, can’t be measured solely by scientific apparatus and brain graphs.

There is such a thing, as that ICU chief impressed on me, as communing with the near-dead. Or maybe it’s just a matter of being allowed the space to resign oneself, to accept the rarity of miracles, to release a loved one and be released from doubt in turn.

The ICU chief who allowed my family time for reflection was a wise man and compassionate.

Justice Michael Moldaver, a member of the appeal court that heard this case — its judgment pending — I also know to be a man of immense wisdom and integrity.

He posed a question to the doctors' lawyer: "Are we that impoverished a society that we'll say, 'We'll just let him go?' Why wouldn't we look at it the other way and say, 'Let this person keep going?'"

Dying should never be the expedient option.

It is important that the DiManno column emphasizes the need for a nonconfrontational way to make medical decisions that cannot be reversed and that effect the family throughout their lives.

It is also important to note how she expresses the importance of the rights of the families and the fact that, as important as physicians are, they should not be the arbiters of who will live and who will die.


Anonymous said...

In there you said that a patient is a human being even if a machine is breathing for him. Well I agree but a machine is not a human being. So if you turn of the machine the patient is still a human being but a human being going where God intended him/her to go. I am not saying to turn of a machine of a person that stands a chance of recovering when a machine is doing it for him now but he will on his own in the future. I am saying let 99 year old great great Grandpa go...He has lived his life and I am sure he is tired and ready to go....It is crazy for someone to want to keep someone like that alive by machines just because they can't bear to say good bye....Grandpa said good bye long ago !!! Use your heads...If a person stands a chance of surviving and living life again give them all you can give but if they are being kept alive in every way and they don't stand a chance to live let them go !!! I say this because I am a patient that sufferes from Ehlers Danlos Syndrome and one day that very well may be me. I have already suffered enough. Please don't make me suffer anymore because you think I can still feel pain....My God I have felt enough pain ! Do not make me suffer any more than needed !!! For those who believe... Heaven is much nicer than Earth !!! As for Baby Joseph I was 100% behind letting his parents take him home ! That was stupid ! The machine was not keeping him alive because there was no other way for him to live. It was keeping him alive until the other procedure was done. To have removed his breathing machine would have been murder !!! With that said you can see the difference between life and death.

nana said...

Unfortunately I believe many doctors now take active steps to assure that the point WILL come where there is NO choice...if they think the person has no value anymore...In my dad's case they administered an anti arrhythmic drug that destroyed his lungs leaving him with little choice...they euthanized him while he was still fully aware of what was happening after making it impossible for him to recover.
At the start of this year my 20 year old son's wound doctor let him go septic without telling us he had an infection--when we found out about the infection from the home health nurses [they finally wrestled the diagnosis out of him], the doc then insisted it wasn't his job to prescribe antibiotics...whos was it...thankfully we managed to save my son...for now...even tho his temp shot to nearly 104 and his heart rate reached 180...he isn't elderly, just severely disabled...but the mentality is the same...

Alex Schadenberg said...

Dear Anonymous:

When you read my comments concerning end-of-life decision making, you will notice that I am not opposed to pulling the plug or withdrawing a ventilator and I recognize that these decisions do not constitute euthanasia.

That doesn't mean that it is ethical to simply "pull the plug" but it means that these decisions are sometimes an acceptance of the limits of physical life.

The point that I continue to make is: Who has the right to decide?

The Rasouli case will determine whether or not the physician has the right to unilaterally withdraw treatment without consent.

The Euthanasia Prevention Coalition supports the decision by Justice Himel who stated that consent must be obtained before life-sustaining treatment can be withdrawn.