“Note A” is only for those who also want to refuse cardio-pulmonary resuscitation.
“Note B” is for ALL who want effective Advance Care Planning.
A) If you have reached the point where you are ready to ask your physician for a “Do Not Resuscitate” order (DNR) (also called a “Do Not Attempt Resuscitation” order" or DNAR), your account will be in MyLastWishes.org. There are two “MUSTs”: You MUST use your state's standard Out-of-Hospital or Pre-Hospital DNR form. If a POLST form is available in your state, you may also choose this form. The form MUST have two signatures. If you have decisional capacity, you must sign. If you lack decisional capacity, a surrogate whom your state recognizes must sign the form. The second signature must be that of a physician licensed to practice medicine in your state. Some states also allow nurse practitioners and physician assistants to sign.
B) If you are NOT ready for a DNR/DNAR order but you want to engage in effective Advance Care Planning, send your information to a “MyPlanMyWishes.org” account—to identify yourself and to express your current and future medical needs. For example, your goal may be to increase your chances of survival in medical emergencies. Another goal is to provide enough information so that if you became lost, others can return you to home. It is never too early to express clearly, your FUTURE goal for others to honor your request for “Natural Dying” if you meet your own criteria for devastating brain damage or Advanced Dementia, and for “Palliative Sedation to Unconsciousness” if no other way can provide you relief from pain. You can express these wishes years before you decide to add a DNR order—as a kind of insurance since anyone can lose consciousness at any time, for example, in a car accident.
In some areas of the country, it might be easy to find a physician who is willing sign your DNR or POLST, but NOT find a physician who will make a video (or audio) recording to verify that you had the mental capacity to give your INFORMED CONSENT for “Natural Dying” and for “Palliative Sedation to Unconsciousness” in the FUTURE. In that case, you can ask the professional team at Caring Advocates to try to locate a physician in your state.
You may also consider asking members of Caring Advocates' professional team, including Dr. Terman, to form and to express an EXPERT OPINION about whether you did or did not possess DECISIONAL CAPACITY around the time you gave your INFORMED CONSENT. This expert opinion would be based on this expert having knowledge, experience and training in the specific area of “evaluating decisional capacity to create Advance Directives” and his/her direct interview of you. (This interview should be preserved by an audio recording, or better, a video recording.)
Why would you want such an “expert opinion” IN ADVANCE? Because someday, someone could challenge your expressed wishes based on the claim that you did NOT previously possess decisional capacity. (These two examples are based on actual cases: 1. “She had already received the diagnosis of mild cognitive impairment (or early dementia) and therefore could not understand the consequences of choosing Natural Dying”—even though patients who have such diagnoses CAN possess decisional capacity. 2. You recently became religious.) If such a challenge were to occur, the interview you had with this expert, which led to the expert forming his/her opinion, could then be reviewed by clinicians who are licensed in the state in which you reside at that time. Your currently treating physicians—or if necessary to resolve a conflict, the prevailing ethics committee or court of law—could then review this interview along with other available evidence.
If the expert forms the opinion that you DO possess decisional capacity, is this opinion likely to prevail? Most likely, for these three reasons: 1) One principle of medical ethics is to assume that a person has capacity unless proven otherwise; 2) The quality of proof provided by a contemporaneous interview is likely to be considered more compelling than other kinds testimony, such as what other people remember about the way your mind worked in the past, or what you did or did not say in the past about your preferences for medical treatment. 3) Importantly, future decision-makers would not only have the recorded opinion of the expert expressing his/her opinion; they would also have your recorded you responses during the interview that are likely to be considered the most compelling kind of testimony. (Recall the old expression, “Straight from the horse's mouth”?) In that sense, the most important factor revealed by your interview could result from the expert guiding you to answer questions that may confirm that your mind was sound and that show how motivated you were that others should honor your specific preferences for treatment in the future. When future decision-makers can see and hear WHAT treatment you DO or do NOT want, and your explanation WHY—such testimony will not only meet the highest standard of proof in civil courts (clear and convincing); they will also likely deter any would-be challenger so your wishes will be honored QUICKLY. This can prevent “To Delay is To Deny,” which is important since prolonged litigation can sabotage your goal for a timely transition.
Does the expert need to be licensed in your home state? If possible, this is the ideal. However, since you may change your state of residence between the time you create your Advance Directives and when this expert opinion may be needed in the future, it may not be necessary for the professional who renders this expert opinion to be licensed to practice medicine or psychology in your present state of residence. Also, no license is required to help a person create his/her Advance Directives. Finally, the recorded interview will likely speak for itself. While no court has yet ruled that an out-of-state expert can provide a clinical opinion, to my knowledge, it would seem to be an unreasonable burden to require clinicians to have licenses in every possible state. Consider the relevant facts and a hypothetical about the well-known but tragic patient, Terri Schiavo. She was born in Pennsylvania in 1963. Suppose she had obtained an expert opinion from a Pennsylvania physician or psychologist prior to moving to Florida in 1986, which was also before she collapsed to a coma in 1990. This expert's opinion might have saved her family many years of litigation (from 1998 to 2005), preserved her privacy, and allowed her to have a timely and peaceful transition. The relevant federal law is the Patient Self-Determination Act; it requires every state to have laws that conform to the goal of honoring of patients' Advance Directives (which includes the right to refuse treatment in advance). In the spirit of that law, it makes sense to obtain an expert decision IN ADVANCE—especially if the specific treatment you wish to refuse is controversial and/or if you have received a diagnosis that is often associated with the loss of decisional capacity.