Thank you for this opportunity to address HB 2849 regarding end of life decisions under the Guardianship Act. It is important to start by stressing that this legislation applies only to situations where a court appointed guardian is already in place; in other words to cases where a court is already involved in the life of the ward whose medical condition is in question. Under current law guardians are empowered to make a large number of decisions for wards with very little outside interference. However, there are nine categories of decisions over which guardians have limited or no authority to make decisions for their wards (see Section 3 (e)). These include the fact that under current law a guardian can not prohibit the wards marriage, consent to the termination of the wards parental rights, consent to adoption of the ward without court approval, consent to any organ donation by the ward without court approval, consent to sterilization of the ward without court approval, exercise authority of the wards estate without court approval and a few other items as well. The point is that the authority of guardians over wards has never been viewed as absolute and is always subject court oversight.

One further area in which we do not allow guardians’ unfettered authority is in the area of end of life decisions. Indeed, current law begins with the presumption that guardians do not have the authority to consent on behalf of wards, to the withdrawal of life-saving or life sustaining medical care. There are two basic exceptions to this rule, the first is where the ward has executed an advance directive setting forth his or her wishes in this regard. The second is the situation that is addressed by HB 2849.

In particular, current law says that life sustaining medical care can be withdrawn where the wards doctor, plus one other doctor, confirm that the ward is either in a persistent vegetative state or “is suffering from an illness or other medical condition for which further treatment, other than for relief of pain, would not likely prolong the life of the ward other than by artificial means, nor would be likely to restore to the ward any significant degree of capabilities beyond those the ward currently possesses.” I want to stop and consider this language because it one of what I believe to be several problems with the existing statute. The current definition is overly broad in that it could apply to able and highly functioning people who need some artificial means (like a portable respirator) to sustain life. Many within the disability rights community have expressed real concern that this language opens the door to mischief. Secondly, the use of the term vegetative is offensive to some.

My proposal would involve deleting the language quoted above, replacing it with a requirement that before medical treatment could be removed the ward must be “comatose and suffering from a severe illness such that life sustaining medical care is objectively futile and would only prolong the dying process.” The term comatose means a state of profound unconsciousness from which one can not be roused. The remainder of the proposed language is designed to ensure that in the denial of medical care we are giving due attention to the distinction between allowing nature to take its course and actively assisting death.

Under current law once a decision is made by the doctors that the ward meets the statutory definition for withdrawal of medical care the guardian provides their written certification to the court. The law states that “Such written certification shall be approved by an order issued by the court.” Two points are crucial to consider in this regard, first the existing statute requires judicial involvement in the end of life decision of a guardian for a ward. But second, the current language directing that involvement is confusing. The use of the term shall in the current law appears to suggest that the Judge has no choice but to sign the withdrawal order. During the off session the Judicial Council heard testimony on this issue and it was my impression from that testimony that Judges themselves take a range of opinions on the meaning of the current statute. Wherever one stands on this issue I think we can all agree that the nature and extent of the review to be conducted by the court should not depend upon which judicial district you live in. We need to clarify this portion of the statue and guarantee that wards receive a meaningful due process hearing prior to withdrawal of life sustaining medical care.

My proposal would require that the court conduct a two part inquiry. First the court would consider evidence as to whether or not the ward is actually in the medical condition specified by the statute. Second, and this is a significant change, the court would consider whether the ward ever expressed consent to the withdrawal of medical care. My proposal would create a presumption in favor of continued medical care in the absence of evidence of contrary intent by the ward; current law given no consideration to the wards intent under these circumstances.

Finally, my proposal would establish a separate standard for the withdrawal of nutrition and hydration. In particular, food and hydration would be viewed as a natural means of preserving life rather than as a medical act. As such they could be withdrawn only if it were not medically possible to provide them without harming the ward, or where the ward has signed a proper advance directive on this issue. As used in my proposal hydration would be given its common medical definition “the taking in of water.” Nutrition is specifically defined in the bill. Where an advance directive is in place no prior court action would be required for withdrawal, but legal standing would be given to interested parties to initiate such action if their was a concern of possible abuse of this process.

This distinction between nutrition and hydration and medical care is based upon the belief that nutrition and hydration are, in principle, ordinary and proportionate, and as such morally obligatory.

Nutrition and hydration are different from medial care such as respirators for the simple reason that death by starvation or dehydration is, in fact, the only possible outcome as a result of their withdrawal. In this sense it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission to deny a person food and water. In other words the withdrawal of nutrition and hydration are actions by the very nature of which bring about death.

Furthermore, we must not underestimate the fact that provision of food and water are powerful symbols of care and comfort that acknowledge the inherent value we see in all human begins. To deny food and water to a fellow human being is to place in question their status of a member of the community for whom we have a duty to act in accordance with the basic demands of human dignity.

To deny nutrition and hydration as a result of arbitrary considerations regarding an individuals "quality of life", is to risk allowing psychological, social and economic pressures, to take precedence over our obligations to fellow human begins; even fellow human beings who are weak.

No cost benefit analysis can outweigh the fundamental value of human life. To determine that decisions regarding human life can be based upon an external analysis of its quality, introduces a discriminatory and eugenic principle into our social relations.

HB 2849 is ultimately about human dignity and our societal obligations to the weakest among us. Those who are wards are, even under the best of circumstances, persons who lack the capacity to meet their own needs in some respect. Wards in end of life circumstances are particularly vulnerable and deserving of special care. Such persons should be protected by laws that ensure adequate due process and that acknowledge their essential human dignity.

I appreciate the opportunity to address this important issue and look forward to answering any questions you may have.

The University of Kansas

To Rep Lance Kinzer,

Lance, I am unable to testify at the House Fed and State Affairs Committee re: HB 2849. I have obligations at The University of Kansas that I am unable to postpone, in large part because they involve several of my colleagues and a student who have arranged their schedules to coincide with each other (and mine).

You may read the following statement to the House Committee if you wish:

I believe the bill is a vast improvement over present Kansas law in at least these respects:

1. It creates a presumption in favor of nutrition and hydration
2. It strictly limits the power of a guardian or other person, including a court, to consent to or order the withholding or withdrawal of either or both (substantive standards)
3. It provides for a full due process hearing on the petition to withhold or withdraw (procedural due process)
4. It puts the burden of proof on the petitioner and requires a quantum of proof at clear and convincing
5. It limits the guardian’s power where a ward has given valid advance directions
6. It limits the standing to secure a hearing to truly interested parties (no “stranger in the courtroom”)
7. It defines consent according to the three traditional elements of that legal construct
8. It defines medical judgment according to an objective standard
9. It requires evidence that is objectively true and thus eliminates the present subjective discretion that a physician is able to bring to bear
10. It implicitly recognizes the possibility of discrimination based on disability

In many respects this bill adheres to the consensus statement of principles of treatment of people at the end of their life developed after the Schiavo proceedings and based in large part on my testimony to the U.S. Senate HELP committee and subscribed to by many individuals and organizations that advocate for the rights of people with disabilities.

In my individual capacity and not in any way as a representative of The University of Kansas or any of its units, I believe the Kansas Legislature will greatly improve present law and take a large step toward protecting wards from discriminatory action if it enacts HB 2849.

Rud Turnbull
Co-founder, co-director
Beach Center on Disability
The University of Kansas
3111 Haworth Hall, 1200 Sunnyside Drive
Lawrence, Kansas, 66045-7534
tel: 785-864-7610, -7611, -7600
fax: 785-864-5825
www.beachcenter.org