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. 3 April 2006
Advance Directives : Wishes or Commands?
Dartmouth Citizen Forum on End of Life Care Highlights Challenges
VEN leads discussion of VT Hospital Ethics Group – Plans for a Summer meeting
VEN Notes
Editor’s Note: To print this newsletter go to the File menu of your browser and click “Print”.Advance Directives : Wishes or Commands?
John Campbell, VEN, Executive Director
As the 10th edition of the VEN’s Taking Steps booklet goes to press, most of the changes from the previous booklet and Advance Directive form printed in February of 2005 are fairly technical and minor. Among the new items are references to the Advance Directive Registry and the proposed “long-form” Advance Directive being developed for approval by the Vermont Health Commissioner as one optional model. Neither is available to the public yet because of the Rule-Making review procedures. The deadlines of Act 55 have officially been extended until September of 2006. To be safe, the references in the new edition of Taking Steps suggest to readers that these options will likely be available by “late 2006,” but this too may be subject to change depending upon circumstances.
The VEN “Vermont Advance Directive Form” that continues to be the center insert is very similar to the one in the previous edition. One section, Part Three: Organ and Tissue Donation, however, has some fairly significant wording updates to reflect current law and practices involved in organ procurement and informed consent. The need for these changes was called to our attention by reviewers from the New England Organ Bank. Past editions of the booklet have noted that families often intercede to block or contravene stated wishes of the potential donor. Until recently (within the past two years) it was the practice that family disapproval or withholding of approval would effectively block moving forward with donation, even in the face of expressed wishes on one’s license, Uniform Donor Card or Advance Directive. That is no longer the case. If such wishes have been put in writing by the potential donor, that statement is now considered “primary consent.” As such it can be acted upon without additional consent from family. In practice, of course, there still is available the sensitive counseling and support for distressed families, to ease them through the trauma of the circumstances and their loss.
Another key provision of Part Three has to do with uncertainty by the person completing the Advance Directive concerning the donation decision. People may genuinely have no opinion (as with other sections of the AD document). In the Organ Donation section there is a clarifying statement that some may want to consider that prevents the automatic or default assumption that no statement means “No”. Not everyone addresses the issue of organ donation or makes an explicit statement in a signed document. The family may still want to “honor” them by making their organs and tissues available following an accident or sudden death. Such a situation was brought home to me when a best friend from college dropped dead from a brain aneurysm this winter. His widow noted that he had no documents but she nevertheless gave consent for donation to proceed with organs and tissues, including corneas. Eight people ultimately benefited. If the default assumption had been in play that might not have happened; in hindsight, her decision not only provided closure but also seemed to be what her husband “would have wanted.”
These changes in the Organ Donation section highlight an ongoing discussion and persistent questions about Advance Directives: “Will my advance directive be followed? - Will doctors (and family) honor my wishes?” People still refer to the 1995 SUPPORT study in expressing their fears that just the opposite will be the case. In that study, wishes were not followed in as many as half the cases even though the doctors were aware that the patients had Advance Directives. There are several responses one can give. First, that study was conducted in large urban hospital settings. Second, the Advance Directives may not have been as clear as they could be. Third, circumstances are fluid and not every decision is “black and white.” Perhaps the most important thing to remember is this: with an Advance Directive and an agent on the scene there is significantly less likelihood that your wishes and choices will not be honored.
There still remains the distinction some people want to draw between “wishes” and “commands”. Even in the VEN form, there are sections that are clearly “wishes” and not commands. Take for example the statement at the end of Part Two: ___ I prefer to die at home if this is possible. Clearly that is a “wish” that circumstances and support, which may or may not be available at the time, will determine. Yet, if someone who is hospitalized in the throes of a final illness has checked or initialed this statement, that may provide the impetus for family and caregivers to do everything possible to accomplish and honor that wish.
A final thought about ambiguity. Can someone vacillate between statements in their Advance Directive and directions they have also given to their agent and physician, without the formality of including a “Ulysses Clause” or much longer, complicated instructions? One would hope this would be so! In a small community hospital setting where everyone is known to everyone else – patient, agent, physician, nurses, therapists – the unique and personal support of this type of response can be more apt to occur. To an outsider it may look like the written wishes (for example, not to be placed on a ventilator) were not being followed; to everyone else it may be clear that there was room for interpretation and successful short-term treatment that was well within the purview of honoring the patient’s wishes and desires. Medicine continues to be an Art as much as a Science and no document can or should change that.
Dartmouth Citizen Forum on End of Life Care Highlights Challenges
Approximately 90 individuals from Vermont and New Hampshire – physicians, nurses, hospice volunteers, educators and interested community citizens – convened at Alumni Hall on March 31 for a unique interactive planning forum on “Improving Care for Life’s Last Chapter” led by Dr. Ira Byock, Director of Palliative Care Medicine at Dartmouth Hitchcock Medical Center. Attendees had an opportunity to vote on ways to improve care at the end of life and were able to add their unique suggestions and recommendations in a process of keypad voting and instantaneous editing that Dr. Byock and his assistants led the participants through. A report will be forthcoming. What made the Dartmouth session unique was that it was focused upon improving end-of-life care as a component of overall Health Care Reform. The lessons we all took away were that much still remains to be done and that sharing ideas for action in such a forum can be highly beneficial in shaping policy for our region and the country as a whole.
A couple of interesting features were the distance between participant wishes and the reality that currently is or that looms in the future. For example, about 98% said they wished to be cared for by family and friends at the end of life. The reality for the very old and for the baby boom generation (which wasn’t very procreative itself!) is that family will probably not be available for all of us. Another statement was that 0% wanted to die in a nursing home. Not surprising (I voted that way, myself!) Still, 30-40% will die there eventually. Finally, 15% wanted to die in hospice facilities or residences. There was only one such facility licensed in all of Vermont last year, in Williston, VT – and it has a small number of beds in keeping with the residential and homelike character it was designed to achieve.
VEN leads discussion of VT Hospital Ethics Group
Plans for a Summer meeting begin to take shapeAt a meeting at Dartmouth Hitchcock prior to the 23rd Session of the afternoon educational meeting of the NH/VT Hospital Ethics Committee Network with 20 people from eight different Vermont hospital ethics committees, John Campbell of VEN led the group through some of the responses from the March 13 conference on Capacity of Patients to Make Medical Decisions. After sharing the thoughts and ideas from the table discussions that were capstone of that day’s event, he shared the suggestions for future programs that many people included in their evaluations. A number of people suggested more use of case studies and more sharing of assessment tools and strategies as well as more outreach and education about Advance Directives. As the group discussed topics for future meetings, one emerged that is particularly topical for many hospitals near neighbor state borders (NH, NY, MA, even Canada). It was decided to move the meetings from one part of the state to another rather than always meeting centrally, and so it was decided to have the summer meeting in St. Johnsbury at NVRH with the theme being “Border Issues.” An example would be the issue of withholding or withdrawing artificial feeding and hydration without an express direction in one’s Advance Directive. Lee Stookey of Brattleboro mentioned that “border” issues also related to inter-departmental communications within hospitals – ER and acute care and outside providers such as hospice and home health. The discussion in July will be wide-ranging!
VENnotes
April 20 – Maximizing Patient Choice and Life Control at End of Life – presented by Diana Barnard, MD at St. Stephen Episcopal Church in Middlebury, 7-8:30 pm. Contact information (see above).
April 22 – Premier event: The Vermont Council of the Blind is unveiling an exciting new technology at the Capitol Theatre in Montpelier at 10 AM – a free screening of an audio described movie providing access to the movie experience for the blind and visually impaired. This involves narrated descriptions of both the dialogue and the non-verbal action of the movie through receivers and earphones that will be given to those who attend. For more information contact Mike Richman at (802) 862-8558 or email him at Michael.richman@att.net.
April 27 - Advance Directives - presentation by John Campbell (VEN) and Peg Young, RN (RRMC) at the Iron Lantern Restaurant in Bomoseen, sponsored by RRMC HealthWise Program and the Castleton Community Center Senior Lunch Program. Luncheon fee is $3.50 for seniors and $4.00 for non-seniors. Lunch 11:30; presentation at 12:15. To make reservation call (802) 468-3093.
May 12 - Advance Directives – panel discussion/presentation co-sponsored by St Peter’s Episcopal Church, Home Health and Hospice - Bennington, St. Peter’s Church on Pleasant St. 10 AM-Noon. For more information contact Judy Krum at (802) 442-5269.
June 8 – 9 Annual Hospice Caregiver and Volunteer Conference at Lake Morey Inn and Resort in Fairlee, VT followed, on Friday by the Annual Meeting and planning session of Project ExCEL. Contact Virginia Fry of the Hospice and Palliative Care Council at (802) 223-1878 or 229-0579 for the Conference or Patty Launer at VPQHC (802)-229-2152 for the ExCEL program Thursday evening and Friday morning.
July 12 – VT Hospital Ethics Committee Group Summer Meeting at Northeastern Vermont Regional Hospital in St. Johnsbury, 10 AM – 2 PM to discuss “Border Issues” in ethics concerning neighboring states’ interpretations of advance directives and other related issues. (It is anticipated that a future meeting will be held in the Southern part of the State, but it is hoped that the warm weather and sense of adventure will lure people from all parts of the State! … more details later!) Contact VEN at (802) 828-2909.
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.
Check out website for up to date calendar listings. www.vtethicsnetwork.org
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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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