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. 1 July 2006
Is What I Wanted Then What I Want Now?
Implementation of the Vermont Advance Directive Registry to Begin Soon
VIEW: The World of Dr. Paul Farmer – Something to Aspire to
VEN Notes
Editor’s Note: To print this newsletter go to the File menu of your browser and click “Print”.Is What I Wanted Then What I Want Now?
Gail S. Cashman, MSN, RN
Case Consultant, Dept. of Clinical Ethics
Fletcher Allen Health CareIn hospital labs, when an abnormally large number of a certain cell type appears on a slide, the technician reports this as “TNTC”: Too Numerous To Count.
Advance Directives! Powers of Attorney for Health Care! Name an agent to speak for you! Discuss your preferences with your agent and other significant people in your life! How often has each of us advocated for these things to family, friends, and in discussion groups? I’m guessing “TNTC.”
So…if someone does all the above things, AND recounts his/her preferences repeatedly and consistently, we’re home free, right? Well…maybe not.
This case is one that was referred to our Ethics Consult Team. It involves an elderly gentleman with a history of End Stage Renal Disease requiring dialysis three times a week; rapidly progressing dementia; and unsteadiness on his feet, resulting in numerous falls. His wife (and care-taker for the past decade) has rescued him from many such incidents, but was unable to do so after his latest fall. He could only be moved by the skilled hands of the local Rescue Squad, and was transported to our facility by them. He was then admitted to the hospital, following a diagnosis of multiple rib fractures and a small laceration of his spleen. He is now ready for discharge; where to send him is the dilemma.
In recent decades (particularly since the 1976 New Jersey case of Karen Quinlin), our American culture has slowly but surely adopted a strong policy of respect for patient autonomy in decisions regarding their health care. This means that anyone who has decision-making capacity (DMC)(1) is allowed to consent to or refuse any and all medical tests and treatments, even if such refusal might hasten their death. When the patient lacks DMC, the situation becomes much trickier.
Making health care decisions for a loved one is not as easy as it might seem. One pitfall is that we, as humans, tend to choose what WE would want for the patient, rather than trying to discern what he would want for himself. The other problem, which numerous studies have shown very clearly, is that even if we do our best to provide Substituted Judgment, employing our very best knowledge of the patient’s individual values and past life choices, surrogates are wrong more often than they are right. (2)
In his frequently stated preferences, this patient has declared that he NEVER wanted to go to a nursing home. Many times a day, he now asks to go home. His wife (whom he named as his health care power of attorney) would like to be able to take him there, but is exhausted by his increasing care needs. Home is no longer a safe option, even with maximum support from outside resources.
The patient is extremely stubborn, in total denial of his condition(s), and refuses to acknowledge any reason why he shouldn’t go home. He has a tendency to be “mean” to caretakers, and his wife feels this would probably become worse in a nursing home --- possibly requiring some type of restraint. Further confusing the issue, however, is that his now rapidly-progressing dementia often precludes his knowing what’s going on in his life. After his demand to go home, the most common issue he raises is, “Is it time to go to dialysis?” --- even when he’s just returned from that procedure.
One option is to send the patient to a nursing home, despite his numerous and vehement objections to such an arrangement. Many people tell stories of family and friends who have felt the same way as this patient, but when actually living there, don’t seem to hate it at all. Often, they even begin to enjoy the company of other patients. There is also the argument that, once patients reach a certain stage (one which our mentor, Dr. Orr, refers to as the “contented demented”), they are not totally aware of where they are, and happily focus on the activity of the moment.
Another option for this patient’s decision makers is to choose palliative care, even to consider stopping dialysis and requesting admission to Respite House (a home-away-from-home for terminally ill individuals). Although there remain misunderstandings about this path, our palliative care physician, Dr. Berry, who has two decades of experience in the field, assures us that a death from uremia is painless to the patient, and peaceful for family and friends to share.
Although option 2 is certainly a viable one, it may be troublesome in light of the patient’s frequent queries about dialysis. Because no one ever “returns” from this type of dementia, it is not possible to study the meaning of such unrelenting questions by the patient. Is it simply because dialysis is one of the very few constants in his life that he can recall? (Other people with this diagnosis might constantly ask how soon until the next meal, even when the trays have barely been cleared from the last one).
There is also the possibility, however, that the process of dialysis provides some benefit to the patient that cannot be identified by those of us outside the experience: the camaraderie, the intense attention from staff, the change of scenery, etc. Keeping this possibility in mind, how are we to judge that the burdens of a nursing home would outweigh the benefits this patient derives from his dialysis?
It is necessary to remember that the beauty of naming an agent to speak for us lies in its flexibility. When it is not possible to abide by all of a loved one’s preferences, the agent is empowered to elect which of the choices should have priority at any given moment. In selecting a nursing home in this case, it might simply mean saying, “We are out of other viable alternatives, and this arrangement is necessary right now.”
My colleagues and I agree that this case, up to now, mimics innumerable patient situations, not just in our state, but nationally. To outline the outcome, however, might make the case identifiable, and violate the patient’s privacy and our dedication to preserve confidentiality. So, as much as I’ve always enjoyed Paul Harvey’s “The Rest of the Story,” I would feel uncomfortable sharing that information in this article.
The outcome, however, though always interesting, is not really the point. The point, of course, is how we should proceed in such a case. As with many cases involving dilemmas of care goals for someone who cannot speak for himself, there is no absolute right or wrong. The point is the process: that we gather the facts of diagnosis and prognosis as extensively as possible; that we have the thoughtful discussion, that we approach the question with multidisciplinary input.
At the Mall of America in Minneapolis, there’s a woman’s store that carries only clothing in black and white. How nice if we could have an “Ethical Store” that provides such clarity, one that would tell us the absolute right and wrong answers. Unfortunately, such precision is in direct opposition to the concept of a dilemma. Our Ethics Consults rarely contain the term, “mandatory,” and only occasionally say, “impermissible.” They are filled with recommendations of gathering further information, of instituting (or continuing) time-limited trials of treatment, of waiting for patients or families to adjust to what has recently shaken their world. There appears to be no call in the Mall of America for a store of items in various shades of grey --- that very tricky area in which we find ourselves when trying to tease out whether What I Wanted Then is What I Want Now.
(1)Decision-making capacity is decision specific. For example, one does not need to be able to decide how to execute his financial planning, or even be able to pay his bills, in order to know what he wants to accept and refuse in terms of health care. It is a very personal choice, based on the benefits to be gained versus the burdens to be endured, and is usually made on an intuitive, rather than an intellectual evaluation. It is important to remember that any decision will certainly vary as age and circumstances change, and may even vary from day to day as new insights and sometimes new fears arise.
(2)Sulmasy, et al. More talk, less paper: Predicting the accuracy of substituted judgments. Am J Med 1994; 96: 432-8
Seckler, et al. Substituted judgment: How accurate are proxy predictions? Ann Intern Med 1991; 115: 92-8
Gerety, et al. Medical treatment preferences of nursing home residents: Relationship to function and concordance with surrogate decision-makers. JAGS 1993; 41: 953-60
Somenblick, et al. Dissociation between the wishes of terminally ill parents and decisions by their offspring. JAGS 1993; 41: 599-604
Comments on this article may be sent to VEN.
Implementation of the Vermont Advance Directive Registry to Begin Soon
The Vermont Department of Health and representatives of the US Living Will Registry (USLWR), provided a demonstration in mid-July of the Vermont Advance Directive Registry. This system provides Vermonters the opportunity to submit their Advance Directives for 24-hour web access and retrieval by health care providers and partners when they are needed.
The event included a presentation on the processes hospitals and other partner organizations will utilize to access Advance Directives from the secure registry, as well as procedures for Vermonters to submit Advance Directives. The Registry’s security processes require health care providers and partners to sign agreements to ensure information is used appropriately. Some process details are still being developed and will be explained to partner organizations in meetings to occur by the end of September. Thereafter, Vermonters will be encouraged to begin the process of sending their documents to the Vermont Advance Directive Registry. VEN will be assisting the VT Dept of Health, local hospitals and other local community partners in a series of workshops and “fairs” to introduce this new opportunity beginning this Fall. These will be well publicized locally and statewide.
Promotion of the Vermont Advance Directive Registry will invite all Vermonters to review and update their current Advance Directive or to complete one if none exists. All types of forms, including the new VEN form, will be accepted by the Registry.
REVIEW: The World of Dr. Paul Farmer – Something to Aspire to
In the book Mountains Beyond Mountains by Tracy Kidder we are led on a journey of one man’s passion doctoring the poor, mainly in Haiti, but in other corners of the world as well. Trained at Harvard and affiliated with Brigham and Women’s Hospital in Boston, Dr. Paul Farmer early in his training was introduced to the desperate conditions of the Haitians, particularly in the rural countryside. He single-handedly created a clinic with handouts and donations in the 1980’s in a village called Cange. This has become his base and passion ever since.
With his colleagues in a thrown-together public charity called “Partners in Health”, Dr. Farmer has brought health care to this remote Haitian village and broadened the awareness of the needs of the poor. He has shown how effective treatments can be delivered for the twin scourges of AIDs and Tuberculosis in such regions. The author describes Farmer’s struggles against huge odds to bring about effective treatment of Multi-drug resistant (MDR) TB in the slums and barrios of Lima, Peru. With the help of mentors such as Harvard’s Dr. Howard Hiatt, he was able to convince the medical establishment to help develop and deliver second-line therapies that are now successful in more than 60 % of the MDR cases. Overcoming governmental skepticism in Peru, convincing giant pharmaceutical companies to reduce costs of treatments, and raising foundation support were among the challenges he encountered.
The book Mountains Beyond Mountains is a well-turned and gripping field account in the literature of Medical Anthropology. It is a hopeful model of what a small group of medical activists can accomplish against great odds when led by a committed and charismatic physician who approaches his field with the sense that limits are irrelevant. Mountains Beyond Mountains by Tracy Kidder is available in paperback from Random House Publishers (1994), $14.95, ISBN 0-8129-7301-1.
VENnotes
September 28 - Middlebury Advance Directive Workshop, 6:30 – 8:30 PM Co-sponsored by the Hospice Volunteer Service of Addison County. The program will be at American Legion Hall on Boardman St. and will feature a presentation by journalist Stephen Kiernan, and hands-on AD workshops with health professionals afterwards. For More Information contact Patty Dunn or Priscilla Baker at (802) 388-4111.
Ethical Issues of forced tube-feeding at Guantanamo - There is an excellent lead article in the August 2006 issue of Harpers Magazine called “God Mode” by senior editor Luke Mitchell for those who may be interested in this topic. JC.
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; Judy Cohen, RN PhD; Betsy Davis, RN MPH; 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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