This post is based on the work of Dr. Ferdinando Mirarchi with the Institute on Health Care Directives. He gave a presentation on 5/11/16 at the Jefferson Education Society in Erie, PA.
There is value in the idea that there should exist a statement of a person’s medical treatment wishes in case the person is unable to provide instruction. This is currently done via 2 documents, the living will and the POLST. The living will is something you keep at home, and the POLST is a document that doctors or hospitals may keep as part of your medical record.
In both cases, the documents were made by lawyers and/or legislators. This means that both medical workers and those who are filling out the documents frequently do not understand or agree on the meanings of the words used, or when these documents should be applied. This results in people being treated, or not, in ways that they did not want.
The biggest source of confusion is that there is not just one scenario. Do you want to be kept alive using all available methods? Under what circumstances? If you are otherwise healthy and have an unexpected heart attack, do you want the first responders to use a defibrillator to restart your heart? What about if you have a terminal illness and you are in hospice? Living wills do not make any distinction here, although they are intended to apply to a person incapacitated by a long term or chronic illness. If an EMT finds you unresponsive, and they find a living will that says you do not want extraordinary measures, it is 50/50 whether or not they will shock your heart or try any other life saving measures.
A complicating factor is that insurers are trying to get people to fill out these forms as a cost savings tool.
Dr. Mirarchi has made a checklist for medical personnel that can be used in emergency situations:
The Resuscitation Pause
ABCDE’s of the Living Will, DNR, or POLST
A: Ask the patient or surrogate to be clear about their intentions in their advance directive (Living Will, DNR order, or POLST form).
B: Be clear about whether this is a terminal condition despite sound medical treatment, PVS (persistent vegetative state) vs. treatable critical illness.
C: Communicate clearly whether you believe the condition is reversible and treatable, and whether with a good or a poor prognostic outcome.
D: Design a plan and discuss next steps. For example, “Your mom is critically ill. We can give her a trial of instituting life-sustaining care for 48 to 72 hours, and if there is no benefit, we can withdraw the life-sustaining treatment and provide comfort.”
E: Explain that it is okay to withhold or withdraw life-sustaining treatment and provide comfort so long as it is in keeping with the perceived wishes of the patient. Also, take a moment to explain the benefits of palliative care and hospice.
The Institute for Health Care Directives has also come out with an ID card that EMTs can use with instructions that are in medical terms they will understand, and that are much clearer to medical personnel than anything in a living will.
Additionally, medical workers need training on this topic. Even a little training goes a long way!
If this were added to required training for doctors and nurses, and something like the ID card were broadly adopted, for instance by insurers, it would go a long way toward improving treatment of people without unnecessary errors. Right now the way it’s headed is that insurers want more people to fill out the confusing forms. This will help them, because if half the time treatment is withheld in an emergency situation based on a living will, it saves them money. They are also the ones writing the laws about this stuff. There really are no advocates for the patients with money to influence the lawmakers.
The website above has a resources and media page with a lot more information.