Health & Fitness: A last gift to loved ones -- Portola Valley woman counsels people on how to leave final instructions on medical treatment Health & Fitness: A last gift to loved ones -- Portola Valley woman counsels people on how to leave final instructions on medical treatment (March 09, 2005)

By Monique Johnson

Special to the Almanac

Nancy Cruzan was in a terrible car accident in 1983 in Jasper County, Missouri, that left her in a "persistent vegetative state."

"Looking back on it, I would like to have let her go that night because Nancy died -- our Nancy died that night," her father told PBS' "Frontline" program in 1992.

Instead, after five years of hoping she would recover, her family initiated what would become a long and difficult legal battle, starting in a Missouri circuit court and ending in the U.S. Supreme Court, where they finally won the right to remove her life support in December of 1990.

Nancy died later that month.

Her family's agonizing journey helped pave the way for the establishment of patients' rights to outline individual health care preferences prior to a medical crisis -- the right to avoid a fate similar to hers.

What if ... you are in an accident similar to Nancy's? Or, what if a stroke, heart attack, terminal illness, or Alzheimer's disease incapacitates you? Would your loved ones be able to figure out what health-care choices you would make?

Following in the footsteps of a 1991 federal law (the Patients' Self-Determination Act), the California Health Care Decisions Law was enacted in 2000, spelling out the right of every Californian to specify their future health-care treatments through a document known as an Advance Health Care Directive.

In the directive, you may name a person to act on your behalf when your primary physician determines that you no longer have the capacity to make your own health-care decisions. Also, you can provide direction about your values and choices for care at the end of life.
Local missionary

Betsy Carpenter is on a mission to educate people about these rights.

A resident of The Sequoias in Portola Valley, she has learned first-hand through family tragedies about the difficulty of making health-care decisions for loved ones.

She now devotes many hours to conducting workshops, counseling people, and teaching Stanford Medical School students about health-care directives.

Ms. Carpenter thinks of the advance directive as "part of the basic notion of preventive medicine" and a "gift" to loved ones who may face critical choices about your medical treatments.

"Make these plans when you are healthy, before you have a crisis," Ms. Carpenter insists. "Avoid conflicts at your bedside and take the burden off your family's shoulders by outlining your preferences now."
Naming your agent

The first choice in an advance directive is to appoint a "Health Care Agent" -- a person to whom you give legal authority to make health- care decisions for you if you are unable to make these decisions for yourself.

This agent, who could be a member of your family, a friend, or someone else you trust, will be responsible for receiving information from your doctor and applying your values or directives in making treatment and care decisions.

"Consider someone who knows and will respect your values, can be expected to be available when needed, and is willing to accept the responsibility," advises Ms. Carpenter.

If you do not name an agent, your primary physician is required to look for someone who has a "close and caring relationship" with you to make any necessary decisions. Ms. Carpenter, and the California Medical Association, recommend you make this choice yourself.
Health-care instructions

The second part of the directive allows you to specify a set of personal health-care instructions when you can no longer make your own health-care decisions due to an irreversible or terminal condition, with little or no hope of improvement.

Ms. Carpenter has designed worksheets to help people clarify their values on when treatment should be used in an attempt to prolong life (using "life support" such as respirators, feeding tubes, CPR, dialysis, pacemakers, antibiotics, or transfusions), and when to be allowed to die naturally.

"Imagine if you cannot communicate in a meaningful way; are bedridden or cannot eat by mouth; are unable to live independently or take care of your own dressing, bathing, or toileting -- and your condition is unlikely to improve," Ms. Carpenter says. "How would this impact your health care choices?"

Ms. Carpenter suggests using "people speak" in your directive, such as, "If people who know me well think, 'she would hate this if she knew...' or 'I'm glad she won't remember this,' they are recognizing my values and must act accordingly."

Instructions may also address issues such as pain control, day-to-day care, placement options (hospital, hospice, nursing home, home), organ donation, and spiritual wishes and traditions to be followed.

"Make sure your planning is complete, clear, and will be supported by health-care providers," Ms. Carpenter counsels.
Put it in writing

After thinking about these issues, talking about them with family, friends, and your doctor, put your instructions in writing to be sure they are respected, Ms. Carpenter says.

You can follow a standard form such as that put out by the California Medical Association, or expand upon it to craft your own personal document.

In order for your directive to be legal, it must have your signature and the date, and be either notarized or witnessed by two qualified people (the form give specifics).

"It is extremely important to discuss this document with your chosen agent, your family and your primary care doctor," Ms. Carpenter says. "Give them each a copy, and be sure to keep your original directive in a safe place at home with your important papers."

Ms. Carpenter also suggests reviewing the document every few years when you do your taxes ("remember death and taxes," she says) to make certain it still represents your wishes.

"Do it yesterday," counsels Ms. Carpenter.

For more information

Betsy Carpenter, a local counselor on health-care directives, points out that forms are available from these sources:

** California Medical Association (Advance Health Care Directive Kit, entitled "My Health Care Wishes" in English and Spanish for $5). Order at 1-800-882-1262 or www.cmanet.org (click on the "CMA On-Line Store" and choose "Advanced Health Care Directory Kit" from the pull-down menu).

** Stanford University Hospital, The Health Library (no charge). Main Library, 2-B Stanford Shopping Center; call 725-8400. Stanford Hospital branch, 300 Pasteur Drive, 3rd floor; call 725-8100. Stanford Cancer Center branch, 875 Blake Wilbur Drive; call 736-1713.

** Palo Alto Medical Foundation, Community Health Resource Center (no charge), 795 El Camino, 2nd floor, Jamplis Bldg., Palo Alto, 614-3200. The foundation offers a free consultation; call 853-2960 to schedule. You can download the form from this Web site: pamf.org.

** El Camino Hospital Health Resource Center & Medical Library (no charge), 2500 Grant Road, 1st floor, Mountain View. Call 988-7622 to schedule a free consultation. Web site: www.elcaminohospital.org.
More resources:

** California Coalition for Compassionate Care is a statewide partnership of more than 50 regional and statewide organizations dedicated to the advancement of palliative medicine and end-of-life care in California. Its Web site has fact sheets, basic forms and instructions, a "Conversation Guide for Talking With Loved Ones" (via "Consumer Education" link), and more. Call 915-552-7573 or go to finalchoices.calhealth.org.

** Coda Alliance -- The Silicon Valley Community Coalition for End-of-Life Care -- provides forms and assistance on completing an advance directive, provides trained facilitators to lead local discussion groups on end-of-life care issues, and has speakers who can address a variety of audiences. Call 408-261-9444 or go to codaalliance.org.

** Sacramento Healthcare Decisions publishes "Finding Your Way: A Guide for End-of-Life Medical Decisions," a 13-page booklet to help people plan before serious illness occurs, and to face end-of-life decisions. Order by calling 916-851-2828. Preview it online at sachealthdecisions.org, and click on "Publications."

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