Friday, December 9, 2005

Session 7: Public Comments

CHAIRMAN PELLEGRINO:  I think we'd like to move now to the final session, which is comments from the public, and I have one person who has requested the privilege and that is Mr. Del Farris of the Arkansas Children's Hospital, Little Rock, Arkansas.

MR. FARRIS:  Yes, my comments basically come from yesterday's session primarily with Dr. Nelson because his topic is where I live.  I'm the Director of Pastoral Care and the Director of the Palliative Care Program at Arkansas Children's Hospital.

And some of the things he said, there were two things in particular that were a little bit concerning for me that I wanted to give a voice for you to hear, and as you go further in your deliberations hopefully you can take some of this with you.

The first was when Dr. Nelson mentioned that he asked this question.  I can't remember the exact context, but he said do CAPTA and EMTALA make any form of palliative care illegal, and I don't know that he was throwing that out there as just a theoretical possibility or is there some legitimacy to what he's saying if you apply directly the language of those regulations?

If so, that's very concerning to those of us in the palliative care movement, and any kind of difficulties to prevent families from having access to and provision of palliative care would be very alarming.

So I would like to ask you as you have influence in this area going forward, if that does have any reality to it, any substance to it, that you take to heart the needs for access and provision of palliative care for patients and families.

Secondly, as a chaplain, he talked about right orthodoxy and faith.  I had to make a couple of comments on that, but in a way I'm not really sure this was his intent.  It may have been more of how I was hearing it, but I got the impression that he was talking about having the medical profession work with families to kind of subdue somewhat their belief system, their right orthodoxy and to go with their feelings.  Parental love I think was one of the phrases that was used there.

And, again, as a chaplain I would say that that's a very dangerous thing to do because families and patients in these critical situations probably at a core of who they are is their belief system, and so I just couldn't let that go by without addressing that and saying that we need to be careful in those arenas.  Hopefully we can engage chaplains and others who have some training and expertise in that to allow the belief systems, even though they may be contrary to what we think is right in the circumstances, allow the families to draw strength and support from them and to facilitate that and not use that as an opportunity to subdue those types of things, but even in those situations where the families are greatly relying upon God for healing, as we've worked with families like that, often medical communities believe that they're in denial when the reality is that that's not so.  It's just their faith system, and until they go through that process of exercising their faith the way that they've been taught and brought up, they're not able to accept the end result.

And so we have to support them and enable them and advocate for them with the medical team, and so I would just caution going forward in those regards.

There were just a couple of other things.  One, the quality of life discussion.  It has been my experience in working with families in the NICUs and the PICUs that it's not so much that they're trying to make the child's life go away, which I think was a phrase that was used around the table here.

My experience is it's because they have come to the place where they are agonizing over the continued infliction of pain and harm and discomfort and suffering that their child is undergoing.  So they're not thinking about we need to put an end to this life, but they are thinking about that we want to end this ongoing suffering.

And just the agony that those families go through in those circumstances, we theoretically can talk about quality of life, but that's not really where families are.  The parents are there in the trenches just deeply moved that their baby is suffering, and they can tolerate that for a certain extent if there is hope, but a lot of times the hope comes essentially to an end, and then they want to put an end to the ongoing aspects of suffering.

Yes, sir.

CHAIRMAN PELLEGRINO:  Thank you very much.

MR. FARRIS:  Okay.

CHAIRMAN PELLEGRINO:  Oh, I'm sorry.

MR. FARRIS:  Just had one more thing, which was on community.

CHAIRMAN PELLEGRINO:  Right.

MR. FARRIS:  That came up about talking, physicians talking.  I'm a preacher.  I'm sorry.  I may be taking more time than I need to here.

But that is the bottom line issue I see with families and ethical situations.  I've been a member of our Ethics Committee for ten years, and a lot of times what we've discovered is that if we go and have an opportunity for a couple of Ethics Committee members to get together with the family and then with the physicians, it's simply a matter of family and physicians talking past each other, and not being able to communicate.

Often we can avoid going through a full committee meeting if we just sit down and have some good communication.  So remember that also, Dr. McHugh's point there about communicating and taking the time.  I really believe that is an essential part of what we need to do in providing good care that's ethical and meets those needs.

Thank you for your time.

CHAIRMAN PELLEGRINO:  Thank you very much.

I have one more request, which we did not have at the beginning.  Richard Doerflinger of the Untied States Conference of Catholic Bishops.

MR. DOERFLINGER:  Well, thank you, Doctor.

I didn't sign up yesterday because I wasn't sure whether the snow would keep me from coming at all.

As someone who participated in the events of the 1980s on Baby Doe and resulting legislation, I wonder if I could comment on that because it has already been stated here yesterday that you need to understand the context in which that legislation was framed.

The Baby Doe case in Indiana was one of the more egregious cases, but it was by no means an isolated case.  There was a survey showing 77 percent of pediatricians at the time would have done the same thing, refuse routine surgery for a child simply because the child also had Down's Syndrome.

There were cases at Yale-New Haven, at Johns Hopkins, University of Oklahoma, which is depriving handicapped children for surgery for spina bifida based on the formula Q equals NE times H plus S, quality of life equals natural endowment times contribution from home and society.

Children were denied treatment not only because they were expected to be mentally retarded, but simply because they were poor and black.  And that led to a court case that was settled out of court.

The response to that initially was by Surgeon General C. Everett Koop, who of course himself was one of the great pediatric surgeons of our time, and that was exactly the principle that has been discussed here yesterday:  equal treatment for equal cases based on the equal dignity of every human life, and so you had a nondiscrimination standard for giving children with other disabilities the same medically indicated surgery you would give to others.

Now, that was fiercely opposed by the American Academy of Pediatrics.  Dr. Fost, who was here yesterday, wrote against it, said it would be a much better standard to say that you can withdraw treatment when the disabilities are such as to render the child incapable of experiencing any benefit of the treatment.  Severe disabilities beyond Down's Syndrome should be, he argued a case for removing otherwise routine life saving treatment.

Frankly, to disability rights groups this was a bit like saying there will be no racism against the more light skinned racial minorities, and the outrage about these cases continued.

It has been said also that Peter Singer has a chair in ethics at Princeton University.  Perhaps more relevant to this discussion is that Peter Singer wrote the guest editorial in the official journal of the American Academy of Pediatrics on this issue opposing the Koop rule in which he famously said that a pig or a dog is smarter than a handicapped newborn and perhaps has more rights.

The American Academy of Pediatrics sued successfully against the Koop rule and decided it would prefer an actual standard of care to be specifically written into policy and engaged in a negotiation with right to life and disability rights groups, which they all signed, including the AAP, and that is the language you have before you now.

I think my organization was the only one engaged in the negotiation not to sign the final language because we did have a concern that burdensomeness of treatment and inhumaneness of treatment can be a factor even in cases where it is not going to be virtually futile in sustaining life, but understandably, the disability rights groups did not want that burden standard because (a) it's inherently subjective and (b) they feared, I think, with reason that the medical profession would translate that through its prism in which an unhappy or unproductive life can itself be a burden.

And so that is what produced the language you have before you now, and I'm delighted to see pediatricians now discovering the nuances of Catholic teaching on burdensome treatment.  Even death bed conversions are welcome, but in this case it may be 20 years late.

Thank you.

CHAIRMAN PELLEGRINO:  Thank you very much.

Dr. George.

PROF. GEORGE:  Yes.  If I could ask Richard Doerflinger a question, one of our presenters yesterday said that she thought even if the rules were loosened, as she suggested they be loosened, we would not today have circumstances like the Baby Doe case.  We wouldn't have the outcome we got in the original Baby Doe case, and she gave some reasons, including, she said, our understanding of Down's Syndrome children, our appreciation of their abilities and their worth has improved so that no one today, no responsible person today would think it would be okay to deprive the child of an operation just because he was handicapped.

Now, that did, I must say, I didn't have an opportunity to get in on the discussion at that point, but it did strike me as dubious, especially in view of the widespread practice of eugenic abortion of Down's Syndrome children, something that Dr. Kass called attention to in a profound talk that he gave at the Holocaust Museum a few months ago.

But I wonder what your perspective is on the question of whether the loosening of the rules might, in fact, result in more cases like the actual Baby Doe case or do you think she's right that we're past that now?

MR. DOERFLINGER:  I'm not sure the situation has changed that much.  Frankly, at the time, in 1983 and so on, the groups opposing Dr. Koop's regulation were perfectly willing to say using Down's Syndrome was not the right way to go, and there were, you know, recognitions that Down's Syndrome children can lead happy and productive lives, but there are other disabilities that are more serious in which a happy and productive life is not the case, and the disability rights groups I think rightly said, "It's not your job as a doctor to make me happy.  It's your job to heal my suffering body when it's in need and not to make your judgments about what kinds of people ultimately are going to be happy and productive and, therefore, have worthwhile lives."

So I don't think Down's Syndrome, though it was the most egregious case that prompted the whole debate, it was the part of the debate that people were sort of willing even then to agree on, at least in principle, and they opposed the regulation because it would also apply to other cases that in their view are more egregious.

I think the problem is with the standard itself.  What is the role of medicine in this case?  Is it to make us happy or else?  And I think that issue remains.

CHAIRMAN PELLEGRINO:  Thank you very much.

I'd like to thank the members of the Council, the speakers, the staff, everyone who participated in this 22nd meeting of the Council.

We now stand adjourned.  Thank you all very much.

(Whereupon, at 11:27 a.m., the meeting in the above-entitled matter was concluded.)