Bioethics Discussion Blog: Whose Right to What Life?

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Wednesday, May 04, 2005

Whose Right to What Life?

The National Right to Life organization has currently proposed a model legislation to be used by individual states in the U.S. which would deny any "guardian, surrogate, public or private agency, court, or any other person … the authority to make a decision on behalf of a person legally incapable of making health care decisions to withhold or withdraw hydration or nutrition from such a person…” This would be based on the presumption “ … that every person legally incapable of making health care decisions has directed his or her health care providers to provide him or her with nutrition and hydration to a degree that is sufficient to sustain life.” The exceptions, beyond the physiologic, would be “if the person executed a directive in accordance with [the state advance directive statute] specifically authorizing the withholding or withdrawal of nutrition and/or hydration, to the extent the authorization applied.” or “ if there is clear and convincing evidence that the person, when legally capable of making health care decisions, gave express and informed consent to withdrawing or withholding hydration or nutrition in the applicable circumstances.” As I read the proposal, substituted judgment, now legal and ethical in many states, would no longer apply to termination of food or fluid but would require “clear and convincing” evidence to do so. Is this legislation really in the best interest of the incapacitated patient or for promoting the further interest of organizations such as the National Right to Life? The entire model is reproduced below. ..Maurice.


MODEL STARVATION AND DEHYDRATION OF
PERSONS WITH DISABILITIES PREVENTION ACT

Section 1. Short Title
This act shall be known and may be cited as the [STATE NAME] “Starvation and Dehydration of Persons with Disabilities Prevention Act”.
Section 2. Definitions
A. “Attending physician” means the physician who has primary responsibility for the overall medical treatment and care of a person.
B. “Health care provider” means a person who is licensed, certified, or otherwise authorized by the law of this state to administer health care in the ordinary course of business or practice of a profession.
C. “Express and informed consent” means consent voluntarily given with sufficient knowledge of the subject matter involved, including a general understanding of the procedure, the medically acceptable alternative procedures or treatments, and the substantial risks and hazards inherent in the proposed treatment or procedures, to enable the person giving consent to make an understanding and enlightened decision without any element of force, fraud, deceit, duress, or other form of constraint or coercion.
D. “Nutrition” means sustenance administered by way of the gastrointestinal tract.
E. “Person legally incapable of making health care decisions” means any person who:
1. Has been declared legally incompetent to make decisions affecting medical treatment or care, or
2. In the reasonable judgment of the attending physician, is unable to make decisions affecting medical treatment or other health care services, or
3. Is a minor.
F. “Physician” means a physician licensed by [relevant state statute].
G. “Reasonable medical judgment” means a medical judgment that would be made by a reasonably prudent physician, knowledgeable about the case and the treatment possibilities with respect to the medical conditions involved.
Section 3. Presumption of Nutrition and Hydration Sufficient to Sustain Life
A. It shall be presumed that every person legally incapable of making health care decisions has directed his or her health care providers to provide him or her with nutrition and hydration to a degree that is sufficient to sustain life.
B. No guardian, surrogate, public or private agency, court, or any other person shall have the authority to make a decision on behalf of a person legally incapable of making health care decisions to withhold or withdraw hydration or nutrition from such a person except in the circumstances and under the conditions specifically provided for in Section 4 of this act.
Section 4. Presumption of Nutrition and Hydration, When Inapplicable
The presumption pursuant to Section 3 of this act shall not apply:
A. To the extent that, in reasonable medical judgment:
a) provision of nutrition and hydration is not medically possible,
b) provision of nutrition and hydration would hasten death, or,
c) because of the medical condition of the person legally incapable of making health care decisions, that person would be incapable of digesting or absorbing the nutrition and hydration so that its provision would not contribute to sustaining the person’s life.
B. If the person executed a directive in accordance with [state advance directive statute] specifically authorizing the withholding or withdrawal of nutrition and/or hydration, to the extent the authorization applies.
C. If there is clear and convincing evidence that the person, when legally capable of making health care decisions, gave express and informed consent to withdrawing or withholding hydration or nutrition in the applicable circumstances.
Section 5. Civil Remedies
A. A cause of action for injunctive relief may be maintained against any person who is reasonably believed to be about to violate or who is in the course of violating this act, or to secure a court determination, notwithstanding the position of a guardian or surrogate, whether there is clear and convincing evidence that the person legally incapable of making health care decisions, when legally capable of making such decisions, gave express and informed consent to withdrawing or withholding hydration or nutrition in the applicable circumstances.
B. The action may be brought by any person who is:
(a) The spouse, parent, child, or sibling of the person;
(b) A current or former health care provider of the person;
(c) A legally appointed guardian of the person;
(d) The state protection and advocacy agency, or
(e) A public official with appropriate jurisdiction to prosecute or enforce the laws of this state.
C. Pending the final determination of the court, it shall direct that nutrition and hydration be provided unless it determines that Section 4A is applicable.

5 Comments:

At Thursday, May 05, 2005 10:23:00 AM, Anonymous Dan Sengenberger said...

As you said, most (all?) states accept that, should someone not have the capacity to make medical decisions, then a surrogate decision maker is appointed to (presumably) make decisions in that patient's best interests.
However, many surrogate decision makers have inherent conflicts of interest (eg, inability to let a loved one die, financial constraints, desire of the surrogate to move on with his/her life) which lead them to make decisions based on their own biases, and (as an MS4) I've seen these voiced in ERs and ICUs where I've worked.
I'm not suggesting that subsituted judgement is unethical, nor do I think that this bill will clarify this dilemma. But I do worry when we accept substituted judgement at face value without recognizing that the surrogate has their own interests which may be in conflict with the patient's (ie, the bill has a point).
By the way, in other bills I've seen, they include an estimated cost of enacting the bill. I'd like to see someone's estimate as to how much more this bill would cost our health care system.

 
At Thursday, May 05, 2005 2:50:00 PM, Blogger Maurice Bernstein, M.D. said...

Dan, a surrogate who is appointed by the Durable Power of Attorney for Healthcare {DPAH) virtually "speaks" for the patient when the patient cannot speak for him/herself.
Other less legally formal surrogates provide information leading to "best interest" decisions. But it is hopefully understood by all attending physicians that the information provided by all surrogates including the DPAH legal ones should be received but with attention to the possibility of conflict of interest on the part of the surrogate. If this is highly suspected or better still documented by the healthcare provider, the request by the surrogate should be carefully considered or reconsidered in this light. Remember, not all requests by a surrogate or even by a competent patient must be followed if they are not in keeping with current standards of medical practice or, in some cases, are morally unacceptable to the provider. In these cases, the physician must aid the patient or surrogate to find another physician who would comply.

As far as the monitary cost to society if the legislation went into effect, this is of importance but only secondary to the ethical aspect of the legislation. That is, whether the legislation meets accepted ethical principles and standards, including being just. ..Maurice.

 
At Friday, May 20, 2005 7:07:00 AM, Anonymous Lois Shepherd, J.D., Florida State University said...

The text in this model statute appears to be the same as that in a Florida bill proposed, but not adopted, in spring 2004 in response to the Schiavo case.

The key issue as I see it is not the requirement of "clear and convincing evidence" to withdraw nutrition and hydration. That is already the standard in many (most?) states, including Florida, at least with respect to surrogates designated by statute rather than appointed by the patient when competent.

The issue is more the kind of evidence that will satisfy the standard. The new language is that regarding "express and informed consent" which is going to require evidence of much more specific conversations or documentation about the patient's wishes. In Florida, courts will consider evidence of the patient's values and personality, along with informal conversations, to satisfy in some cases the clear and convincing standard. Legislation such as that proposed would severely limit the value of such evidence. It appears to have the intention and purpose of requiring more people to document their wishes in writing. This is a huge problem, because many people do not, for one reason or another, do so. There may also be good reasons for them not to do so, as a written document is static, the forms provided are often vague, and they take discretion away from family members even when the patient would have wanted family members to have that discretion.

 
At Friday, May 20, 2005 8:32:00 AM, Blogger Maurice Bernstein, M.D. said...

Lois, I don't see how any legislation would be found reasonable by the courts that would insist that the patient, in advance, when having the capacity to make medical decisions, could possibly know or write words detailing the exact clinical conditions under which the words will take effect. Isn't the patient understanding the current clinical condition, the burdens and benefits of treatments or procedures (or terminating these treatments or procedures)or alternatives is what "informed consent" is all about? The inability of the patient to anticipate all that years in advance is the basis for the establishment of a surrogate. ..Maurice.

 
At Monday, May 23, 2005 7:28:00 AM, Anonymous Lois Shepherd said...

Maurice, I agree entirely. I think the model act proposed by the National Right to Life would not only be unreasonable, but would be unconstitutional.

 

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