What voice do we have in how and when we want to die. Only two in five people have advance health care directives according to a Harris Interactive Study from 2007. I do not have one – yet. Although listening to Attorney Philip Batchelder who recently talked at an AHWGO salon about his experience with the complexity of end of life, I should make this an urgent priority.
Here is his message –
1. Rather than trying to dictate what should happen in every given circumstance (not possible), it is most important to 1) appoint an agent (and back-ups) in a legally effective way, and 2) talk to your agent(s) about your attitudes and beliefs regarding medical treatments, particularly end-of-life ones (“The Conversation”).
2. Here is a simple American Bar Association form for appointing an agent and granting the agent broad powers: http://www.americanbar.org/content/dam/aba/administrative/law_aging/2011/2011_aging_hcdec_univhcpaform_4_2012_v2.authcheckdam.pdf This form is very well-conceived and easy to understand. Because it can be used in many states, it is referred to as a “power of attorney” and not an “advance health care directive.” It will still work in California .
3. Directives for health care (including POLST, see #8, below) are not just for the do-not-resuscitate crowd! No matter your point of view, it is IMPERATIVE to name an agent. Also, many doctors & other medical professionals are reluctant to “do everything” when they believe that doing so would brutalize the patient. In short, if you want everything done, establish that preference in an appropriate document.
4. The Kaiser Permanente Advance Health Care packet is attached. If you have KP coverage, you may choose to use this form, but you don’t have to. There is useful information along with the form. I recommend that you attach the optional supplement, but beware the trap in section V (pp. 3-4). There are 3 mutually exclusive choices here!
5. Regardless of whatever standard form you use, you may always attach additional pages of instructions.
6. You may also use a “custom” form. You could just pick and choose language with which you agree, write it on a separate page, and attach it to a standard form (#5, above). This is a good option for those who think that anything other than a standard, easily-recognized-by-doctors-form may get hung up in the hospital’s legal department. I have never had that experience, though, and my directive is similar to the attached sample.
7. For more information about Advance Health Care Directives, including several types of forms, information in many different languages, and many good resources for initiating The Conversation, see the Coalition for Compassionate Care’s fantastic website: http://www.coalitionccc.org/advance-health-planning.php
8. POLST (Physician Orders for Life-Sustaining Treatment) is a great tool to complement an advance directive. it is generally intended for those who are closer to the end. One rule for its use: it is appropriate for someone if it would not be surprising for that person to pass away within 1-2 years. As a physician order, it has more teeth than an advance directive – provided it is executed properly (this has been a problem). For more information on POLST, including multi-lingual resources, see: http://www.capolst.org/
9. If you don’t want the paramedics to revive you: Have your doctor sign the attached EMSA – DNR form, and put it, with your POLST, advance directive, and copy of your photo ID, in an envelope marked “in case of emergency” on your refrigerator.
10. What to do with your documents. Hang on to the originals. You should 1) give your primary health care provider copies, 2) be sure copies are in your hospital chart (if applicable), 3) give your agent(s) copies, and 4) review the documents from time to time to be sure they are current. You may also 1) put copies, with your photo ID, in an envelope marked “in case of emergency” on your refrigerator, 2) register your advance directive with the State of California at http://www.sos.ca.gov/ahcdr/ , 3) make a wallet card (see attached template), and 4) put copies in the glove box of your car.
11. Here’s a link to a thoroughly cited study by very respected authors: www.agingresearch.org/files/611_file_Seven_Deadly_Myths.pdf . It shakes up widely held beliefs about the elderly and end-of-life care, and it is well worth a skim. For another excellent presentation from the American Bar Association, see http://www.americanbar.org/groups/health_law/resources/podcast0410_advance_dir.html
There is much more to say about all this, of course. The talk at AHWGO ranged further than this email. One last thing for now: Properly establishing your preference is a gift to yourself but also to your loved ones. Please do it, and please encourage others to do it as well, including anyone over 18.