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. 13 No. 2 October 2006
Pan Flu Vent Triage Presents Ethical Issues and Dilemmas
Forms, Fears and Formalities
VT Advance Directive Registry – Not Yet
Books of Note
Upcoming Workshops and ConferencesEditor’s Note: To print this newsletter go to the File menu of your browser and click “Print”.
Pan Flu Vent Triage Presents Ethical Issues and Dilemmas
John Campbell, VEN, Executive Director
At a meeting of the Vermont Hospital Ethics Committee Group on September 25 Dr. Robert Macauley, Director of Clinical Ethics at Fletcher Allen, led a discussion of the possible impacts and challenges of a pandemic flu outbreak with respect to the availability of ventilators. There are just over 200 ventilators throughout the State of Vermont. A moderate flu outbreak statewide would require the use of 50-70 more; a pandemic with severe respiratory complications could require the use of over 2000. Most small hospitals only have 4-5 ventilators available, including those used for emergency post-operative procedures. Speaking to 30-35 representatives of hospital ethics committees, Dr. Macauley recommended that any policies that are developed be applicable statewide to prevent “hospital shopping.” Triage would have to be practiced in a severe pandemic outbreak. He referred to work that had been done in Toronto, Canada following a SARS outbreak and a journal article describing a system of tiered triage developed in Minnesota to plan for such a horrendous contingency. The principles used for denying access to vents or withdrawing vents already in use would start with terminal cases but could quickly evolve into second stage triage or rationing. Which non-terminal but desperately ill patients would, because of their functioning and prognosis, not be continued or started? Issues of training in vent use and regional apportionment were also raised. This follows flu drill exercises and a New England regional summit on this topic attended by Public Health officials. New York and Massachusetts are expected to have flu policies available soon. Dr. Macauley invited the group to consider potential involvement on two task groups: one involving clinical standards and (perhaps following that) a second, a standards review committee with slightly broader representation. For those who may be interested, you can email him at Robert.Macauley@vtmednet.org. Ethics Committees at SVMC and CVMC have already discussed the September presentation at their subsequent local meetings.
To TopForms, Fears and Formalities
The VEN Advance Directive form is one of several “optional” forms available to people in Vermont. It was changed in major ways following the passage of Act 55 in 2005 but it is not as comprehensive as the law is in the variety of options. (The current VEN form is available at our website www.vtethicsnetwork.org.) Another form was developed by a working group convened a year ago to help the VT Dept. of Health consider a model form that included all the options in the new law. The so-called “long-form” is 24 pages in length, including instructions. Other forms include a form developed years ago by a group called Aging with Dignity, based in Florida, that is called “Five Wishes” (website: www.agingwithdignity.org). The Catholic Diocese endorses a form called a Protective Medical Decisions Document (PMDD) because it emphasizes the directive to continue aggressive treatment, and life sustaining treatment such as artificial feeding tubes. Their website is www.vermontcatholic.org.
Vermont Protection and Advocacy (www.vtpa.org) has adapted the VEN form by adding special sections addressing the patient or principal’s right to have his wishes overridden under certain clearly defined circumstances (what is known as a Ulysses Clause) and specific directions about shock treatment and medication, primarily for psychiatric conditions.
The Office of Guardianship Services has been exploring developing a simple form that could be used for people with developmental disabilities and others of low literacy or cognitive skills who nonetheless can make an informed choice of an agent to speak for them in medical emergencies.
The take home message to lawyers, trust officers, and other helpers is that there are many forms to choose from and, if your client has specific needs and wishes these can be included in a custom-made form. The key is to have it appropriately signed and witnessed.
While some have criticized the emphasis on end-of-life care that is the heart of Part Two, Treatment Wishes, on the VEN form, it would be well to consider that by far the most common use of these documents is to give authority to limit treatment that, absent clear direction to the contrary, is apt to be the standard default position of our can-do technology and medical orientation in emergency and critical acute care situations. Justice Sandra Day O’Connor even stated in a concurring opinion in the Cruzan case of 1990 that, had Nancy Cruzan had a completed “living will” stating her wishes not to be on a feeding tube, there would be a presumption of a “constitutional right” to have her written directive followed. Trouble was, she didn’t.
Fast forward a decade and a half to Terri Shiavo and you have very similar circumstances. A written document with clear direction both as to limitation of treatment and, even more importantly, who among her family was to be “in charge” of decisions about her care and it would not have taken an Act of Congress, literally, to keep her alive. The venerable case of Karen Ann Quinlan, decided by the New Jersey Supreme Court in the mid-1970’s (involving the removal of her respirator) was yet another classic case that attempted to decide based upon her own supposed wishes if she could have imagined herself in her permanently unconscious state. There was no conflict within the family; even the priest agreed. Still, it took a protracted court battle in all three cases. Would we want that for ourselves or our own families? I think not. So much better to have an advance directive.
Authors Angela Fagerlin and Carl Schneider raise many questions about the wisdom of continued promotion of written advance directives in “Enough: The Failure of the Living Will”1. This article makes many good points about the virtually impossible task of crystal ball gazing into the future and leaving clear, unambiguous directions. The aversion of many people to even consider doing an advance directive is another indication that promoting these forms is a difficult task. We may never get beyond a threshold penetration of 18-25% of all adults who have done a “living will”, somewhat higher among elders and people with pre-existing conditions. Assuming that as many as half of the agents in documents that appoint a proxy decision-maker will incorrectly apply the wishes of the principal to a presenting medical problem anyway, why bother? In a word? Fear. Because many of us have a fear about our final days and the burdens we will place on those we love who will have to make decisions about our care. We are still a death averse culture. Yet we see all around ourselves, in the news about Terri Schiavo in particular, but others as well who are perhaps closer to us but less notorious, the specter of scenarios we would not want to picture ourselves or our loved ones in.
We enter “Medical Land” like a maze in a foreign land, where we lose our personality with our clothes, and our identities become the diseases and films and laboratory tests that describe us to others who don’t know who we are. Most of us do not want to die in a hospital but most of us will. The three things that characterize those last moments for many in whatever stage of consciousness they have are: fear, mistrust and (sadly) pain. Advance directives can’t overcome this in any total way. But fear, mistrust and pain can be mitigated by knowing that somewhere, out there, our voice is being spoken and is being heard. To the extent that Advance Directives can help, why not bother?
1. Angela Fagerlin and Carl E. Schneider, “Enough: The Failure of the Living Will,” Hastings Center Report 34, no. 2 (2004): 30-42.
To TopVT Advance Directive Registry – Not Yet
Due to repeated postponing of the final Rules presentation to the Legislative Committee on Administrative Rules, the package of Proposed Rules being put forth by the Vermont Department of Health to implement the provisions of Act 55 that contain the “Vermont Advance Directive Registry” and other provisions relative to Advance Directives and related forms will not be presented before mid-December of this year. That means that the long-awaited VADR implementation will be delayed until 2007.
Books of Note
Relevant to the discussion of pan flu epidemics, there is an excellent book that describes the issues of surveillance, quarantine, treatment and impact on health workers of the 1918 Flu Pandemic. It is The Great Influenza by John M. Barrie, Penguin Books, New York (paperback), 2004. For those interested in the genesis of viral diseases such as the flu, another good book of several years back, now in paperback, is Robin Marantz Henig’s A Dancing Matrix: Voyages Along the Viral Frontier (1993). A third book you might want to pick up, unrelated to these topics, is William Colby’s new book, Unplugged (2006), which compares the Nancy Cruzan case to the Terri Schiavo case and offers other perspectives on discontinuation of treatment and advance directives. (Mr. Colby was the Cruzan family attorney who gave a presentation last Fall in Burlington, sponsored by the Madison Deane Initiative.)
VEN welcomes new board members and officers for 2007
The Vermont Ethics Network held its Annual Meeting on September 26 and elected new members and officers for the coming year. New board members are: M. Teena Flood, Robert M. Johnson, Christine Graham, Stephen Larose, and Robert Opel. The officers who were elected at that meeting are: Rev. Patrick McCoy, Chair; Judith Cohen, RN, Vice Chair; Kevin Veller, Secretary and Louise Rauh, Treasurer. Retiring board members Richard Brandenburg and Debby Bergh were honored for their nine years of service and leadership on the VEN board.
To TopUpcoming Workshops and Conferences
November 3 – VT Law School 2006 Symposium – “Good for What Ails You: A Legal, Ethical and Policy Review of State-Based Health Care Reforms in New England”. The Program is designed especially for attorneys and includes panels on Advance Directives, Apologies for Medical Malpractice and State-based Healthcare Reforms in Vermont, Massachusetts and Maine. For more information contact Dickson Corbett at VLS. His email address is henry.Corbett@vermontlaw.edu
November 13 - Hospital Ethics Member Training Day at DHMC This is the biennial training program designed especially for new ethics committee members at hospitals throughout the VT/NH region, led by Dr. James Bernat and other clinicians and experts in the field of ethics. The program runs from 8:30-4:00pm and the cost is $50 per person. Deadline to register is November 8. For more information or to sign up contact: Laura Stancs, Administration at DHMC – (603) 650-8830.
November 16 - Advance Directive Workshop in East Calais at the Maple Corners Community Center. 7-8:30pm. Limited to 20 people; $5 fee per person. Contact Julie Tessler at Julie@vtcouncil.org or call her at (802) 223-1907. Discussion of the new VEN form and other alternatives led by John Campbell.
Check out website for up to date calendar listings. www.vtethicsnetwork.org
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Health Decision and VEN InformationBOARD OF DIRECTORS: Patrick McCoy, chair; M.Teena Flood; Cathy Frank, Judy Cohen, RN PhD; Betsy Davis, RN MPH; Christine Graham, Marilyn J. Hart, MD; Robert Johnson; Steve LaRose; Daria Mason; Rev. Denise Niemira, MD; Robert Opel; 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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