End-of-Life Choice, Palliative Care and Counseling

Posts TaggedAdvanced Directive

Healthcare Decisions At The End of Life

When Wishes are Fishes

How do we get doctors to honor our wishes at the end of life? Most recommend preparing an Advance Directive, and I’m no exception. These documents are not infallible, but they are the best thing we’ve got going for us when we can’t speak for ourselves.

However one popular Advance Directive could actually subvert your wishes with its stealth anti-choice language. It’s called “Five Wishes.”

There are two general kinds of Advance Directive. One is called a “health care proxy” or “power of attorney for health care” and it delegates a person to make decisions on your behalf. The other is a the “living will” , which specifies your wishes. Anti-choice activists keep tightening the rules of evidence that govern end-of-life decisions so you need both documents. One names the decision-maker. The other guides the decisions.

Most people use their state-approved Advance Directive form, and these are the most trouble-free and reliable. But the widespread form called “Five Wishes” should come with a warning label. Why? Because the religious dogma imbedded in it could actually subvert your wishes when the time comes.

In 1997 James Towey started a Florida organization called “Aging with Dignity” and wrote “Five Wishes.” With the help of the Robert Wood Johnson Foundation and others, Five Wishes spread across the country. Aging with Dignity claims more than 15,000 organizations distribute Five Wishes, and most of them probably do not know about the religious slant. Many people now have these on file, instead of their own state forms. Five Wishes is a wonderful form in many ways, but fair warning is in order.

Five Wishes incorporates the religious creed that while it is permissible to take action you know will cause death, it is never permissible to intend death. It’s a subtle concept, but central to certain theology related to the end of life. It carries the name “doctrine of double effect.”

Those of us trained in the law usually assume responsibility covers what we know will result from our action, in addition to what we intend. “I didn’t intend to break the window” is no defense if I knew the window was closed and chose to throw a baseball to my friend outside anyway.

The double effect dogma can trip you up if you don’t see it coming. Wish Number 2, “My Wish For the Kind of Medical Treatment I Want Or Don’t Want,” includes the general instruction “I do not want anything done or omitted by my doctors or nurses with the intention of taking my life” (italics original).

Then the form goes on to list medical interventions that keep a person alive and allows you to check the box, “I do not want life-support treatment.” Thus it creates internal conflict within the document.

Even if you check the “do not want life-support” box, a hospital or doctor could object that stopping life support would “intend” death and the form you signed expressly prohibits that. What a confusing mess that could create!

Five Wishes forms are simple and easy to use. It avoids the legalese that makes forms written by legislatures so tedious and opaque. It also includes things you might never think to include in your “wishes,” like the wish to be rubbed with warm oils as you die, or be soothed with a cool cloth. Also, Five Wishes wisely includes brain damage (that would include dementia) along with terminal illness and coma, as a condition that triggers your instructions about life-support treatment.

But Towey makes no secret of his desire to spread the tenets of his Catholic faith and encourage others to live by them. When he left Florida to lead faith-based initiatives at the White House he described his goal unabashedly as to “get into heaven.”

My advice — use your own state form. You can download them free, along with instructions and useful additions to the form, at the Compassion & Choices website.

If you have already filled out Five Wishes and want to keep it instead of changing to a state form, consider crossing out the part that does not allow an intention to end life. The Five Wishes form itself instructs you to cross out portions you don’t agree with. (That instruction somehow went missing from the stealth anti-choice part.)

You can cross it out anyway. Initial and date the cross-out. Congratulations. You have just transformed a fish back into your own, personal end-of-life wish.

Living Will Does Not Prevent Unwanted Resuscitation Attempts

Fortunately, an experience I had while caring for my mother turned out to be educational instead of tragic. In the interest of helping others avoid a potential disaster in end of life plans I’m sharing it with you.

 I moved my mother who was suffering from Alzheimer’s disease to Montana from her home in Washington. She brought with her a living will and an advanced directive that clearly spelled out her wish to not have “heroic” measures taken for her. I dutifully attached a copy to the refrigerator door, put a copy in her purse, informed her caretakers of her wishes, and discussed the documents with her new doctor and gave him copies. Everything taken care of, right? If my mother’s heart stopped, there would be no attempt at resuscitation, right?  Not in Montana. And don’t depend on that being adequate in other states either.

 Imagine my dismay when her caretaker called me while I was out of town and said that mom had collapsed, that she (the caretaker) had called 911 but luckily mom had recovered by the time they arrived and so there was no need for resuscitation. After further investigation I found that, in Montana, emergency responders are obligated to begin resuscitation attempts despite what a living will, a caretaker, a relative or an advanced directive may say to the contrary.

 The only way emergency responders can legally refrain from a resuscitation attempt is if the person has “Comfort One” documents on their body (bracelet or necklace), in their wallet or attached to their refrigerator door.

According to the Association of Montana Health Care Providers

 “Based upon only your living will, you do not qualify for Comfort One status. However, if you have been diagnosed with a terminal condition, you qualify. Another option for qualification is to talk with your doctor about your medical treatment preferences and decide with him your options regarding DNR status. If your physician, based on medical and ethical guidelines, can order do-not-resuscitate status for you, then you will qualify for the program. Your living will is valid only in the hospital setting. If it is presented to EMS personnel, it will be disregarded.

 Montana Administrative Rule allows only physicians, hospitals, home health agencies, hospice agencies and long term care facilities to issue forms and bracelets to patients. The ultimate source of enrollment is with your physician as Comfort One requires a physician’s signature on the form.”

 Due to Mom’s age, her mental and physical condition and her living will I was able to easily obtain Comfort One status from her physician. But who knew? Obviously her physician had not thought to inform us about this critical regulation. I cannot imagine how angry I would have been had her collapse been followed by a near certain unsuccessful attempt at resuscitation (more on the subject of resuscitation success rates next time) with all its attendant pain and suffering.

 If you know someone who does not want a resuscitation attempt, let them know that, in order for their wishes to be met, they must contact their physician and enroll in the program. If you are such a person, call your physician now! If you live outside Montana investigate your state’s regulations regarding emergency responders’ obligations to attempt resuscitation. A phone call now may prevent a nasty surprise later.