If you've read my new Mother Jones article on the health care rationing controversy, "Meet the Real Death Panels," you know that I have strong feelings about end-of-life choice. In the article, I write:
I am a big fan of what's sometimes called the "right to die" or "death with dignity" movement. I support everything from advance directives to assisted suicide. You could say I believe in one form of health care rationing: the kind you choose for yourself. I can't stand the idea of anyone—whether it's the government or some hospital administrator or doctor or Nurse Jackie—telling me that I must have some treatment I don't want, any more than I want them telling me that I can't have a treatment I do want. My final wish is to be my own one-member death panel.
Anyone concerned with having some power over the circumstances of their own death will find a helpful article along with source materials in the May/June issue of the Women's Health Activist Newsletter, put out by the Women's Health Network.
To begin with, physicians and other medical professionals don't get to call the shots. They can be good educators, advisers, even facilitators, but they do not make decisions. More to the point, you don't want to get in any situation where they subtly get to make the decision because of the way they pose alternatives or put the questions. The Network advises patients to go over these different documents, starting with Advance Directives, discuss them with close friends and family as well as medical professionals. They can be changed any time so you are not locked into any specific path.
The Women's Health Network sets out three basic documents, and tells a little about each, and then provides contact information.
Advance Directives: This legal document allows you to indicate whether, and under what circumstances, you want certain medical interventions, such as cardiopulmonary resuscitation (CPR), intubation (using a machine to breathe for you), feeding tubes, etc. You can also designate a "health care agent," who can make decisions if you can't. This person must follow your directives even if their own choice would be different and/or if others disagree. The health care agent can be a relative or a friend–not necessarily your physician. You can download a free copy of your state's most current Advance Directive at www.caringinfo.org
Five Wishes: Sometimes called the "living will with a heart", was developed by an associate of Mother Teresa,who wanted to give patients and families information–"a way to express directives about medical interventions, and the care they want (or don't want) as they are dying," such things as what to do with the body after death and whether to have or not have a memorial service . Five Wishes is available in 25 languages from www.agingwithdignity.org or 1-888-594-7437.
Physician Orders for Life Sustaining Treatment (POLST) is described in detail at http://www.ohsu.edu/polst. Here is a summary from the Women's Health Network:
This relatively new document is designed to give people more control over their end-of-life care and, importantly, to create a legal directive that travels with the person through moves between residential and medical settings. POLST is primarily for those whose health is frail and have a fairly high risk of dying sometime over the next year. Once the patient completes the POLST and it is signed by both physician and the patient, it becomes part of the person's medical record. It has been designed to avoid the need to sort out medical directives in an emergency situation with little or no information. (For example, someone may become critically ill at home or in a nursing home, and is unable to give their directives. 911 is called and the patient is ambulanced to a hospital where, in absence of an Advance Directive, Five Wishes or a similar document, all interventions and tests are done immediately. It's really sad when, hours or days later, directives are located that may mandate the opposite of the care that was given.) Once POLST is completed and signed by both patient and physician, other physicians and health care providers must legally follow its instructions. The goal is to prevent unwanted or ineffective treatments, decrease patient and family suffering, and ensure the patient's directives are honored.
This post first appeared on the Unsilent Generation blog.