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ADVANCE HEALTH CARE DIRECTIVES

What is an Advance Health Care Directive?

State law says that you have the right to decide what health care treatment you want or don’t want. For example, if you don’t want blood transfusions or chemotherapy or radiation treatment, you have a right to refuse it even though your doctor may recommend it. So long as you are conscious and able to communicate with your care providers, they must first obtain your “informed consent” before proceeding with any treatment or procedure that is proposed.

But what if you are unconscious, comatose, or otherwise unable to understand what is being proposed or you cannot communicate your wishes? What if the doctors want to use treatments or procedures that you know you don’t want? How can you be sure your wishes will be respected?

The answer: Have a properly executed Advance Health Care Directive stating your wishes and appointing an agent to carry out your wishes. Only about 10% of the general population have advance directives, but every adult ought to have one.

Each state has its own law governing advance directives. In other states, such documents are variously referred to as medical directives, health care proxies, health care powers of attorney, health care declarations, or living wills. The document officially recognized by California state law since July 1, 2000, is the Advance Health Care Directive (AHCD), as set forth in Probate Code §4701.

Current California law also recognizes the old Durable Power of Attorney for Health Care Decisions (DPAHC) and the Natural Death Act Declaration (NDAD), which were the approved state forms prior to the AHCD.

[Note: Prior to 1992, all DPAHCs had a built-in 7-year expiration date. If you have an old DPAHC form from before 1992, it has expired and needs to be re-done.]

Both the AHCD and DPAHC allow you to designate an agent and alternate agents to make health care decisions for you in the event you cannot make those decisions yourself. Your agent must act according to the instructions you give in the AHCD or DPAHC. In either document, you can address all of the following issues:

• Specify whether and under what conditions you would want artificial life support.
• Specify treatments or procedures that you want or don’t want.
• Authorize your agent to access your medical records and talk to your doctor.
• Specify whether you want maximum pain relief in the event of a terminal illness, even if that could be addictive or could hasten the moment of your death.
• Specify what you want done if you are in an irreversible coma or a persistent vegetative state where there is no hope of recovery.
• State whether you want to authorize organ or tissue donations, and if so, for what purposes (transplant, research, education, etc.).
• State whether you want to permit or prohibit an autopsy.
• State your preference for burial or cremation, and any specific arrangements you may have with a mortuary or funeral home.
• Give instructions regarding your desire to be cared for in your own home as long as possible.

Where can I get the California Advance Health Care Directive form?

• Your Estate Planning Attorney
• California Medical Association:
  CMA Publications 1-800-822-1262
  221 Main Street www.cmanet.org/bookstore
  P.O. Box 7690
  San Francisco, CA 94120-7690
  [Note: the CMA form does not include a pre-printed section addressing maximum pain relief in the event of a terminal illness, so you have to add this if you want it included in their form.]
• Legal Services for Seniors, 915 Hilby Avenue, Ste. 2, Seaside, CA 93955.
  Phone: (831) 899-0492. Monday through Friday, 9AM to 5PM.
  LSS provides help to seniors age 60 and up who are Monterey County residents.
  Services are free, though tax-deductible contributions are welcome.
• Hospitals and Hospices
• Internet – www.hogefenton.com/PDF%20Files/advance.pdf www.caringinfo.org/files/public/California.pdf* [This site also has advance directives for other states & much more!]
  *This form does not have language regarding HIPAA, permitting agent access to medical records.

What about having a “Living Will”?

“Living Will” is a generic term that is sometimes used by the media to refer to any type of advance directive, but more accurately it is simply a formal statement that you don’t want artificial life support if there’s no hope of recovery. The “living will” is not a valid legal document in California, although it is a valid document in many other states. While a generic “living will” may be a valid indication of your wishes, it may not be enforceable and it does not appoint an agent to act for you.

What authority will my agent have?

The agent appointed in your AHCD will have legal authority to make health care decisions for you if you can no longer make those decisions yourself. The agent is the person the doctors and hospital staff will defer to for your health care decisions. Your agent will be able to authorize or withhold medical treatment, sign a DNR (“Do Not Resuscitate”) form, have access to your medical records, make decisions about pain relief medication, organ donations, authorize an autopsy, and arrange for the disposition of your remains after death.

What kinds of statements can I make in my advance directive?

The form itself gives a number of options, including those already mentioned, but it also allows you to draft your own statements in as much detail as you want.

Remember to address the issue of maximum pain relief in the event of a terminal illness if that is of concern to you. There may not be a pre-printed statement in the AHCD form, so you might have to add such a statement. For example:

Maximum Pain Relief: In the event I am terminally ill, I desire that I be given maximum pain relief medication and be made as comfortable as possible, even if this leads to addiction or hastens the moment of my death.

With regard to organ donations, your AHCD agent has the authority to authorize such donations unless you say otherwise in the document. Donations can include:

• Organs: heart, kidneys, pancreas, lungs, liver, and intestines
• Tissue: cornea, skin, heart valves, middle ears, bone tissue, and connective tissue
• Bone marrow

There are no set age limits for organ donors, although there are guidelines, depending on the organ (or tissue) to be donated. The deciding factor is the donor’s physical condition, not the donor’s age. Religious convictions should be considered in making organ/tissue donation decisions.
-- For more information, see www.organdonor.gov.

You can also donate your entire body to science, but you need to make proper arrangements ahead of time. Currently four campuses of the University of California have “willed body” or “donated body” programs:

• U.C. Davis: www.ucdmc.ucdavis.edu/cellbio/donatedbodyprogram/ (916)734-9560
• U.C. San Francisco: http://anatomy.ucsf.edu/WBP/index.html (415) 476-1981
• U.C. Irvine: www.ucihs.uci.edu/com/willedbody (949) 824-6061
• U.C. San Diego: http://meded.ucsd.edu/ugme/bdp/faqs/ (858) 534-4536.

You can state in your AHCD whether or not an autopsy may be permitted.

With regard to disposition of remains, you can specify burial or cremation, or leave it to your agent to decide. Note that the AHCD agent has the legal authority to direct the disposition of your remains, even if other family members have different ideas. If you want to leave instructions regarding a funeral or memorial service, you can include those instructions as part of your AHCD. Prepaid cremation or burial arrangements should be specified in the AHCD.

What about “Do Not Resuscitate” (DNR) forms?

A pre-hospital DNR form is a standard pre-printed form that notifies emergency medical personnel not to use any resuscitative or other heroic measures to restore breathing and/or heartbeat if these functions have ceased. The DNR form can be signed by either the patient or the patient’s surrogate, and the patient’s physician must also sign the form. A copy should be kept in plain sight at the patient’s home (on the refrigerator door is the best place). DNR forms are typically used only for very elderly or acutely ill persons.

If a patient has already been admitted to a hospital, a hospital DNR form can be signed either by the patient or by the patient’s agent and this will go in the patient’s file if the attending physician also signs it. THIS IS A SEPARATE FORM, and it is only good during the duration of the patient’s immediate stay at the hospital.

Whom should I name as my agent?

• Select someone you trust who understands your decisions and is willing to carry them out. The agent should be willing to talk with you now about sensitive issues and listen to your wishes.
• Do not name an agent whose emotions will get in the way of making and implementing a decision to carry out your wishes.
• Pick someone who can be a strong advocate for you if it is necessary for the agent to be assertive with an uncooperative doctor or health care institution.
• Make sure your agent agrees to serve and clearly understands what you want.
• Your agent can be a spouse, an adult child, a parent, a sibling, or a friend, but not your doctor, caregiver, or someone who works for the health care institution where you are receiving care (unless that person is a relative).
• Ideally, you should name at least one alternate agent as well, and be sure to include complete contact information (address, home phone, work phone, cell phone, etc.).

The American Bar Association has developed a wonderfully helpful “Consumer Tool Kit” for dealing with your Advance Health Care Directive, and “Tool #1” deals with how to select the most appropriate health care agent. You can find this on the internet at http://www.abanet.org/aging/toolkit/.

How can I best prepare my agent to act for me?

• Spend time with your agent discussing your wishes and answering their questions.
• Make sure your agent has a copy of your advance health care directive.
• Review and discuss the ABA “Guide for Health Care Proxies” with them [see Consumer Tool Kit, “Tool #9.” http://www.abanet.org/aging/toolkit/ ].
• Get the booklet, “Healthcare Agents: Appointing One and Being One,” from Caring Connections at www.caringinfo.org/files/public/QA_Health_Care_Agents_booklet.pdf or call (800) 658-8898.
• Also consider getting the Five Wishes video and view it with your agent, or get their “Next Steps” guide and discuss that with your agent.

What is the “Five Wishes” thing?

“Five Wishes” is a discussion tool/advance directive form that poses 5 questions to help structure your end-of-life decisions. It contains some very helpful and thought-provoking guidelines for making such decisions. Here are the 5 questions:

1. 1) Whom do you want to make health care decisions for you when you can’t make those decisions yourself?
2. 2) What kind of medical treatment do you want (or not want)?
3. 3) How comfortable do you want to be?
4. 4) How do you want people to treat you?
5. 5) What are your wishes for your loved ones?

The Five Wishes form can be purchased from Aging With Dignity for $5.00, and it meets California’s legal requirements for an advance health care directive. Call (888) 5-WISHES (594-7437), or go to www.agingwithdignity.org. They also have a guide called “Next Steps” on coping with serious illness and a 25-minute video (VHS or DVD format) available to explain the form and how to fill it out.

What to do if family members disagree with your end-of-life care wishes:

To ensure that your wishes are followed, be certain that the person you appoint to be your agent understands your wishes and will abide by them. Your agent has the legal right to make health care decisions for you, even if close family members disagree, if you cannot make those decisions yourself. However, if close family members express strong disagreement, your agent and your healthcare professional may find it extremely difficult and/or unpleasant to carry out the decisions you would want.

If you foresee that your agent may encounter serious resistance, the following steps can help forestall interference from others:

• Communicate with family members whom you anticipate may object to your decisions.
• Tell them in writing whom you have appointed to be your healthcare agent and explain why you have named that person.
• Let the potentially objecting family members know in writing that you do not wish them to be involved with decisions about your medical care and treatment and give a copy of these communications to your agent as well.
• Give your primary care physician, if you have one, copies of these written communications concerning your health care wishes, and make sure your doctor has a copy of your advance directive.
• Consider preparing a more detailed advance directive than might otherwise be necessary. Make it clear in that document that you want your agent to resolve any uncertainties that could arise when interpreting the statements you make in the advance directive. Example: “My agent is authorized to make any decisions about how to interpret or when to apply the directions in my advance directive.”

A Word about Psychiatric Advance Directives

If you are worried that someone might seek to have you involuntarily committed for psychiatric treatment at some future time, you can prepare a legal document in advance to express your choices about treatment. The document is called an advance directive for mental health decision-making, or a psychiatric advance directive (“PAD”). So far, California does not have an approved form for this.

For more information on the PAD, the internet has some excellent resources available:
http://www.nrc-pad.org/index.php
http://www1.nmha.org/position/advancedirectives/PADWorksheet.pdf
http://www.bazelon.org/issues/advancedirectives/index.htm
http://www.nami.org/Content/ContentGroups/Legal/Advance_Directives.htm
http://pad.duhs.duke.edu/Toolkit%20PAD%20(consumer).doc