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. 11 No. 4 June 2005
Advance Directive Bill Passes
Advance Directives, Terri Schiavo and You and Me
VENnotes
Editor's Note: To print this newsletter go to the File menu of your browser and click “Print”.
Advance Directive Bill Passes
As the June issue of Health Decisions goes out, the Advance Directive bill (H.115) that passed in the last week of the legislative session is awaiting signature by the Governor. This is groundbreaking legislation. It is the first major overhaul of Vermont 's health care decision statutes in nearly two decades. I would encourage all who are interested to go to the Legislative website www.leg.state.vt.us to view the entire bill as passed by the House and Senate. A brief summary is included below:
Advance Directive Law Summary (passed by the both House and Senate 06/02/05)
H. 115 has as part of its stated purpose enabling adults to retain control over their own health care through the use of advance directives. The law takes effect Sept. 1, 2005.
An “advance directive” is a written document executed under the terms of this law … but it also includes documents designated under prior law as a “Durable Power of Attorney for Health Care” or a “Terminal Care Document.” Chapter 231, section 9701 (1)
There are a number of things that can be done in an advance directive (some of which are and some of which are not included in the current VEN Advance Directive for Health Care form). These are specified in Section 9702 – a sampling of which follows:
- appoint one or more agents or alternate agents .. (Note: VEN discourages the appointment of co-agents, but it is expressly possible to do.)
- specify conditions (other than incapacity) that would trigger an agent's authority
- specify that the AD agent authority can be effective immediately upon execution
- can include instructions about transfer (to hospital or nursing home) as well as treatment wishes
- can include specific instructions if the principal is pregnant
- can designate other individuals (in addition to the agent) to receive health information under the HIPAA (privacy rules) provisions
- can nominate a guardian if one is needed at a later time (This option is not included in the current VEN form)
- can make anatomical gifts and designate agents and wishes for disposition of remains (included in the VEN form as Part Three and Part Four)
- can authorize the agent to disregard principal's future objections or wishes if special protective measures and clinical support determines the principal understands this waiver of rights at the time the AD is done (This is the so-called “Ulysses Clause” which may be useful in some, largely predictable, circumstances.)
Other differences from prior law and practice
Witness procedures – As before, the Vermont law requires only two witnesses, but the restriction against health providers and residential care providers has been removed . The agent, spouse, reciprocal beneficiaries and other named relatives cannot be witnesses. The provision of having a “third witness” as an “explainer” and certifier that the principal understands the document is standardized, for patients in nursing homes and hospitals, to include ombudsmen, recognized members of the clergy, attorneys licensed to practice in VT and designees of the Probate Court, but the practice of having the hospital social worker continue in that role appears to be somewhat limited, in special circumstances. The hospitals are expressly directed to have sufficient numbers of designated explainers available to assist those patients who wish to complete AD's.
Other Important Features – DNR orders; AD Registry implementation
DNR Orders are expressly included in the Chapter (231) (section 9708)
- sets out protocols for MD signing and communicating with the patient, agent or guardian about the establishment of a DNR order
- allows the issuance of a DNR identification (bracelet or other format) that links the order to the specific patient
- does not restrict the issuance of DNR orders to specific classes of patients (e.g. those who are terminally ill)
- requires that protocols be followed in health care facilities and that consistent standards and protocols be developed statewide for EMS protocols for following both DNR orders and Advance Directives (see Section 9719 (a).
Advance Directive Registry to be established within 180 days
The Commissioner of the Vermont Department of Health is required to assure that an Advance Directive Registry is operational (See Section 9719 Obligations of State Agencies, at the end of the bill) within 180 days of the effective date of this Act.
Within the same 180 day time frame, a sticker must be available to people to put on their licenses through the DMV.
After the Advance Directive Registry is operational, health facilities have 120 days to develop protocols and procedures to guarantee that the Registry is checked for any person without capacity (to direct their own care and treatment) coming to that facility (Sect. 9709 (a) (3) )
The Commissioner is required to report to the legislature by Jan. 15, 2006 and each year thereafter about the progress and educational/outreach efforts associated with promotion of the Registry. (Section 10 (a) (1) of the bill, at the end)
Advance Directives, Terri Schiavo and You and Me
The legacy of the young woman named Terri Schiavo who died in March of 2005 after her feeding tube was removed was a lesson, heard by nearly everyone, but heeded by relatively few, that we should all do (or redo, update and “dust off”) advance directives for health care.
The Vermont Ethics Network, a non-profit educational organization which promotes the use of advance directives in Vermont witnessed a record of 1895 visits on its website www.vtethicsnetwork.org on March 22. Previous “visits” by people to that web address had averaged 35-40 per day. In three weeks in late March and early April of 2005, VEN website visitors downloaded over 8000 copies of the new Advance Directive for Health Care form. Now, in the early summer months of the same year, the interest appears to be flagging. Americans are characteristically getting back to working in their gardens, attending weddings and graduations, and planning summer vacations. Talking about potential health crises or end of life decisions has receded. The forms downloaded from the internet or the booklet Taking Steps produced by the Ethics Network have been set aside with old magazines and paid bills which one may have trouble parting with but really does not want to deal with just now.
Yet it would behoove us all to remember the painful lessons of the ordeal and death of Terri Shiavo. Her family was torn apart with conflict. Her own wishes, though supposedly verbalized to her husband shortly before her health crisis in 1990, were never set down on paper. Powerful forces on opposites ends of the moral and religious spectrum took up her plight as a crusade. Courts and legislative bodies, including the US Congress and even the President, sought to determine the outcome of her life-sustaining treatment, in this case artificial feeding and hydration through a feeding tube.
You and I will probably not make the news as we approach death and the end-of-life decisions others are called upon to make on our behalf, but our end could be – albeit on a much more intimate scale – a time of conflict, confusion, fear, mistrust and pain, just as it was for those whose lives were connected to Terri Schiavo. That is why it is vitally important for all of us to talk with our families and others close to us about our wishes and hopes and fears so that they will know what our wishes are. We might not be able to predict how our lives will end, or when, but a basic knowledge of our own health history and an awareness of how others have died can give us an inkling of what we hope will or will not happen to us. We can then let those close to us know. Better still, we can state who we wish to be making decisions for us when we can no longer do so and what our specific hopes and concerns are in a document called the Advance Directive for Health Care.
In the closing days of the 2005 Legislative Session, the Vermont Legislature passed and the Governor signed a bill that expanded the scope of Vermont's law in this area. Act (tbd)___, Relating to Advance Directives for Health Care, consolidated and improved Vermont's laws that have to do with advance directive forms (previously referred to as the Terminal Care Document or “living will” and the Durable Power of Attorney for Health Care). Elements of the two older forms plus new options and choices have been combined in a new Advance Directive form designed by the Vermont Ethics Network. Among the new features are sections that allow for the sharing of wishes about organ donation and funeral arrangements. As with the older documents, one can appoint a health care agent and specify the situations under which life-sustaining treatment is no longer desired. The new legislation also will create an electronic registry, sponsored by the Vermont Department of Health, which will be a repository of Advance Directives so that they can be immediately found and applied in critical and emergency health care situations. This is expected to be operational by early 2006.
We might not have the same condition that Terri Schiavo had. There might not be the same level of controversy and disagreement among our family about treatment at our own life's end. Still, having made preparations will lift the burdens and wondering that people might face about what our wishes would be in the critical last days of our lives.
Start by discussing our values and goals. It is difficult to begin a discussion with family or close friends about what one wants in critical care or end of life situations. The place to start is not with technical or medical treatment information but with personal goals and values. What is most important to us in our lives? What does “quality of life” mean to us at this stage in our lives? Perspectives change as we age or acquire chronic or intermittent conditions that might restrict our enjoyment of life in some ways. We might be fine now but we might be worried about something that might happen to us, particularly if there is a family history of a particular illness or condition.
Choosing an agent to make decisions for us is the most important thing we can do. We must have the necessary conversations with the person we want to be our health care agent to be sure he or she understands our wishes, appreciates those situations we are ambivalent about, knows how our thoughts have changed over the years and can reassure us about being able to make the health decisions we want them to make for us.
In choosing an agent, we do not have to pick a member of the family, we can pick a neighbor or a close friend. We must realize, however, that our family should know what our choices are both about the person who will be there to speak for us and our specific wishes and instructions. While the agent will have the authority to make the decisions as we have directed, it will be important to consider other people's feelings as well in the event we have a health care crisis. There is a space for noting who should or should not be consulted, in addition to the agent, at these stressful times.
Another suggestion is to think about what different medical options have meant for others we know. Frequently we hear people say soon after a difficult surgery or witnessing the death of someone else, “Whatever happens, I do not want to go through what she went through!” Some risks and complications can be predicted and people have different approaches to assessing risks and benefits when it comes to their own personal chances. Companion worksheets with Vermont's Advance Directive form in the booklet Taking Steps, published by the Vermont Ethics Network (and available at hospitals, home health agencies and many doctors' offices), help people sort out some of these questions and are helpful to use as we discuss our feelings with anyone who may be appointed as our health care agent or with our family.
If you want to view and download the new Advance Directive for Health Care form, you can find it at the VEN website: www.vtethicsnetwork.org Or, you can call the Ethics Network at (802) 828-2909.
John Campbell, VEN Executive Director
VENnotes
Upcoming programs and presentations:
CAT-TV Bennington (Channel 15) “Thirty Minutes on Health” for Monday, June 20 is the program “Advance Directives –Making Your Wishes Known” – a panel including Barbara Raskin, MD, Virginia Cuddihy, MSW and John Campbell with SVMC Host Kevin McDonald. This program will be re-aired next month on Channel 15, GNAT-TV in Manchester and Duncan Cable, Wilmington. Check local listings.
Adelphia Cable (channel 74) program – “The Law and You” with host Bob Paolini of the VT Bar Association and guest John Campbell (VEN) talking about Advance Directives (originally aired in April) will be rebroadcast at the following times: Wed., June 29 at 7pm; Thurs., June 30 at 10pm; Sat., July 2 at 5:30pm and Tues., July 5 at 10am.
Rutland County Caregivers Coalition - free public presentation on Advance Directives at the Brandon Public Library on Tuesday, July 19, 2005 from 6:00pm til 7:30pm. Booklets, forms and refreshments will be provided. For more information call Eva Zivitz, RN at RRMC at 772-2471.
Check the VEN website www.vtethicsnetwork.org for other announcements of programs and presentations. For example, later this summer Wendy Morgan of the Attorney General's Office and a Vermont physician will be discussing the implications of the new Advance Directive law with Bob Paolini on “The Law and You.”
Volunteers needed by the LTC Ombudsman program -
Would you like to help people in Nursing Homes, Residential Care Homes and Assisted Living Residences? The Vermont Long Term Care Ombudsman Project is looking for volunteers to advocate for older persons living in these settings. Call Alice Nicholson at 1-800-769-6728 for more information.
(Editor's Note: Among the many services Ombudsman staff and volunteers can assist with are explaining to residents about Advance Directives and making sure that, if they are being completed there, the residents understand what they are doing.)
Receive HEALTH DECISIONS via email: Sign up today to receive our Newsletter by email. Simply go to www.vtethicsnetwork.org and fill out the form or email us at VEN@vtethicsnetwork.org
Health Decision and VEN Information
BOARD OF DIRECTORS: Cathy Frank, Chair; Debby Bergh ; Richard G. Brandenburg, PhD; Anne Cramer, JD; Betsy Davie, RN MPH; Roger S. Foster, Jr., MD; Bea Grause, RD, JD; Marilyn J. Hart, MD; John A. Kern; Daria Mason; Rev. Patrick McCoy; Denise Miemira, MD; Betty Rambur, RN DNSC; 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