HEALTH DECISIONS
A Publication of the Vermont Ethics Network
( 64 Main St. , Room 25, Montpelier , VT 05602-2951
Telephone: 802 828-2909, Fax: 802 828-6558
Email: VEN@vtethicsnetwork.org , Website: http://www.vtethicsnetwork.org
Vol. 12 No. 2 February 2006
Assessing the Capacity of Patients to Make Medical Decisions
Model “long-form” AD being considered by VT Health Commissioner contains many options of ACT 55 including the “Ulysses Clause” as a separate Part 6.
Gonzales v. Oregon, No. 04-623 leaves States’ options open to consider DWD Bills
Helping the “Voiceless” Patient
VEN Notes
Editor’s Note: To print this newsletter go to the File menu of your browser and click “Print”.Assessing the Capacity of Patients to Make Medical Decisions
John Campbell, VEN, Executive Director
A patient’s right to make medical decisions about treatment – whether consent to treatment or a refusal of offered care – is basic in our society and culture. Even with a sudden or progressive loss of “capacity” to understand what is going on, a person can anticipate these situations and appoint a health care agent through an Advance Directive who will be able to step in and make decisions based upon the patient’s wishes and values. Yet, there are many circumstances in which the clarity of the patient’s thinking and capacity to make medical decisions is problematic. What happens then? If the issue is stabilization or emergency treatment, this may be different from the “next steps” or a fuller assessment of medical options that comes later. Even patients who lack capacity supposedly have the right to refuse treatment or to change their Advance Directive. How does this play out in the reality of a hospitalization where there may be confusion, ambiguity and conflicting opinions? … or, where time is of the essence and a decision has to made quickly to assure the best possible outcome?
These are among the issues that will be discussed at an upcoming conference in Montpelier on March 13. “Assessing Capacity of Patients to Make Medical Decisions” is a topic suggested by the steering committee planners of the Vermont Hospital Ethics Committee Group which has been meeting in conjunction with the Spring and Fall DHMC educational programs of the NH/VT Hospital Ethics Committee Network. It was felt a winter conference, open to other clinicians and caregivers as well, could begin to explore the facets of Patient Capacity and the choices and dilemmas that result. Please join us if you can.
To TopModel “long-form” AD being considered by VT Health Commissioner contains many options of ACT 55 including the “Ulysses Clause” as a separate Part 6.
As soon as the Draft Model Advance Directive for Health Care has gone through the rule making procedure of the legislature, it will be added as an option on the VEN website. In all likelihood this new longer comprehensive form will be among two or more choices VEN will publish with its next edition of “Taking Steps.” The current VEN form will be another option for those who prefer the shorter edited version.One interesting and innovative section in the Draft Model form is the so-called “Ulysses Clause” of Part 6. The name comes from the fateful return by ship from the Battle of Troy where Ulysses wanted to hear the Sirens singing near the shore. They had lured many a sailor to shipwreck on the rocks of the coast. Knowing this, Ulysses bade his sailors stop their ears. He directed them to tie him to the mast, without earplugs. Under no circumstances were they to untie him or to steer in the direction he motioned them (toward the Sirens). Translated into a modern medical scenario this might mean: even if I beg you to do this (treatment) or to not do it, I want you to ignore my requests because I will not be in my right mind at the time. Whatever the reason (fear, delirium, confusion) – you are to proceed to give me the treatment I will need or that will benefit me.. While one may think this “Ulysses Clause” option counter-intuitive or paternalistic, it acknowledges a situation that some people, usually based on past encounters and experiences, can foresee happening. Now, seeing things clearly, they waive their right to object in the future.
Phrased in the language of the ACT 55, this is not called a “Ulysses Clause” but rather the permission given to the health care agent to
“authorize or withhold health care over the principal’s objection.” § 9707 (h)(1) While this may be of importance in a fairly small number of cases, the specificity of the direction and the required signed acceptance of the responsibility by the agent are significant protections for some people. The person’s medical provider and a third explainer must also certify that the person filling out this Part 6 statement is aware of its ramifications and free from undue influence.
There are other very specific instructions in the Draft Model form. One other brief example is the optional instruction for life sustaining treatment if the principal is a woman who is pregnant at the time the treatment decisions need to be made. The effect of this statement might usually be to prolong life if it would allow for birth of the fetus.
As with the current VEN form, perhaps the single most important thing to consider is appointing as an “agent” someone who is close to you and very familiar with your values and wishes. Often, simply giving them the authority to make decisions on your behalf after assessing the circumstances will be all that is needed. The other instructions can be helpful to a certain extent, but they may also restrict your agent’s ability to assess the circumstances and your likely choice depending on the situation and treatments at hand.
To TopGonzales v. Oregon, No. 04-623 leaves States’ options open to consider DWD Bills
The decision of the US Supreme Court handed down in a 6-3 ruling on January 17, 2006 did not affirm the state of Oregon’s Death with Dignity law, but it did make clear that the US Attorney General could not declare what constituted “legitimate medical purposes” under the Contolled Substance Act. Previous Attorney Generl John Ashcroft had sought to bar physicians from prescribing controlled substances (drugs) for the purpose of assisting patients in hastening their deaths under the Oregon Death with Dignity law. The lower courts had both denied his authority and the Supreme Court upheld this result.
In a seemingly unrelated case, Ayotte v.Planned Parenthood of Northern New England, No.04-114, the Court unanimously sent back a parental notification law because it did not include a provision to protect the lives of teen-agers whose life might be endangered. A similar Nebraska law prohibiting partial birth abortion was struck down by the Supreme Court by a 5-4 vote in 2000 because it contained no exemptions for medical emergencies. However Congress soon afterward passed the Partial Birth Abortion Ban Act which banned all such procedures and included a statement that the procedure is never necessary to protect a woman’s health. Conceivably, Congress could pass a similar law stating that prescribing barbiturates to hasten death, even when a state had allowed it previously, is never a legitimate medical use of “Controlled Substances.” Just such a case is before the Court now in Gonzales v. Carhart, No. 05-380 which will test the authority of Congress to enforce the Partial Birth Abortion Ban Act it passed in 2003 without the medical emergency exemption it had required in the Nebraska case.
Helping the “Voiceless” Patient
In an article in the Winter 2005 issue of the Journal of Clinical Ethics, Dr. Tia Powell, Executive Director of the N.Y. State Task Force on Life & the Law speaks to the need for empathy in dealing with patients whose lack of capacity is life-long. This would, in her view, go far to giving them a “voice” and avoid the formulaic pronouncements of courts or medical protocols that reduce such patients to “a sort of human widget, an ageless, featureless, nonspecific entity.” She relies heavily on the holding and the dissent in a famous N.Y. case, In re Storar (1981) 420 N.E. 2d; 52 N.Y. 2d 363. In that case, a 52 year old severely retarded man with end-stage bladder cancer that, with complications of severe bleeding, had to be treated with transfusions. As described by Powell, he had to be restrained and sedated to receive these treatments and became increasingly withdrawn and fearful as a result. His mother (who was also his guardian) had agreed to treatments for his cancer, including the transfusions when they became necessary. Despite a prognosis of only 2-6 months of remaining life with continued treatment, the hospital refused to allow the mother to later discontinue transfusions. The court upheld the position of the hospital. The presiding judge, Sol Wachtler, compared the patient, John Storar, to a 2 year child of Jehovah’s Witness parents, in ruling that transfusions must continue over the parent’s wishes. Dr Powell concludes her description of the case:
Wachtler’s decision reflects a failure of empathy; he does not attend to the voice of Storar. To say that Wachtler lacks empathy for Storar does not suggest that Wachtler is cruel or even indifferent to Storar. On the contrary, (he) tries to do what he believes is in Storar’s best interest. However, the information he uses to determine the best interest does not depend on empathic knowledge of Storar’s condition, but entirely excludes it. Wachtler therefore does not succeed in making a decision that corresponds to Storar’s actual circumstances. (T. Powell, Voice, Cognitive Impairment and Medical Decision Making, Journal of Clinical Ethics, Winter 2005, 16:4, p. 306.)
This case has guided New York state law on decision making for incapacited patients for a quarter of a century. It provides a window on the thorny issues of protecting disabled and dying adults while still trying to address their needs with empathy and compassion. That there was a dissenting Justice in this case is an indication that it could have gone the other way. John Storar was dead by the time the decision was rendered.
To TopCaring for Our Own: A Portrait of Community Health Care by George Bellerose (with a Foreword by David Moats), Painter House Press, Middlebury, VT, 2006. 212p.
This is a book that not only makes one feel good about caring and caregiving, but also celebrates the connections between people in a rural health and social services system where the “safety net” is truly a fabric of the community and not just a collection of governmental programs. With pictures of actual citizens of the Middlebury area of Addison County, from the youngest toddlers to elders in a variety of settings, some composed and some candid, but all lovingly recorded in black and white photos by master photographer, George Bellerose, this book weaves the story of health care in action. The context is broad, encompassing social services and caring families.
VEN has several copies for loan or you may get your own free copy by contacting the Addison County United Way, 2 Court Street, PO Box 555, Middlebury, VT 05753-0555. They may be contacted at www.unitedwayaddisoncounty.org or (802) 388-7189. Publication was supported by the Addison County United Way and the Fletcher Allen Community Health Foundation.
February 24 - Osher Life Long Learning (Rutland) has a month-long series on health care. Meetings are Fridays at the Godnick Adult Center on Deer Street in Rutland. The February 24 program at 1:30pm will be a talk on the topic of Advance Directives by VEN Executive Director John Campbell. For more information call Bob Perkins at 773-0184.
March 13 Conference – “Assessing Capacity of Patients to Make Medical Decisions”
(see flyer or email information attached) Call VEN at (802) 828-2909 for more details.)If you have a local event dealing with advance directives, ethical decision-making in end of life care, or other topics related to ethics and health care please let VEN know by emailing John Campbell at vtethicsnetwork@silicondairy.net, preferably several weeks or months in advance so that we can post it on our website and include it in newsletter updates.
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Health Decision and VEN InformationBOARD OF DIRECTORS: Cathy Frank, Chair; Debby Bergh; Richard G. Brandenburg, PhD; Anne Cramer, JD; Judy Cohen, RN PhD; Betsy Davis, RN MPH; Roger S. Foster, Jr., MD; Bea Grause, RD, JD; Marilyn J. Hart, MD; John A. Kern; Daria Mason; Rev. Patrick McCoy; Denise Niemira, MD; Louise Rauh; Kevin Veller
HONORARY BOARD MEMBERS: Arnold Golodetz, MD; Michelle Champoux; James L. Bernat, MD; Jean Mallary; Marge Trautz
STAFF: John Campbell, Executive Director; Jim Mullally, Staff Assistant
Health Decisions is a publication of the Vermont Ethics Network, Inc., a non-profit, tax-exempt organization dedicated to promoting public dialogue about ethical issues and choices in health care.
Vermont Ethics Network
64 Main St., Room 25
Montpelier, VT 05602-2951
Telephone: 802 828-2909, Fax: 802 828-6558
Email: VEN@vtethicsnetwork.org
Website: www.vtethicsnetwork.org
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