Consider the two Goals of Advance Care Planning:
(1) To make sure others learn your end-of-life wishes; and then,
(2) To make sure others honor your end-of-life wishes.
Background: The Institute of Medicine’s 2014 report, Dying in America, recommended staying clear of “check-box-style advance directives”1.
What did the IOM report recommend instead? “Shared decision-making.”
This is a process whereby caregivers, family members, and health care agents can collaborate in making decisions with physicians who know about your disease and the current state of practice.
Many states allow people to express their Living Wills orally. You can do so in advance by recording a video of yourself on which you state what specific treatments you do, or do not want, for possible future medical and mental conditions—and then explain why.
Recording now gives you a voice later; that is, your recording will take a seat at that future “table.”
Advantages of InterviewByInternet.com:
- Your former competent self can strive to persuade others to provide your future self what treatments you really want.
- You can express important details such as how severe or how often must you experience pain and suffering, or how many symptoms of Advanced Dementia you must suffer from—before you would want to forgo treatment that only prolongs and increases the harm and burdens of your disease as it provides you little, or no benefit.
- Convenient, since there is no need to travel. (Caring Advocates’ staff can help you with technical details of InterviewByInternet.com.)
Advantages of Shared Decision-Making:
- When several proxies/agents (instead of just one) chime in, the chance is greater that the decisions made for you will be the same as what you would have made yourself.
- When several people collaborate on striving to fulfill your values and treatment goals, they may experience less stress, themselves.
- When the individuals you trust consult with your physician (and perhaps others you designated, such as a secular or religious counselor), the chance is greater that the decisions made will be consistent with others’ points of view. This can reduce conflict so you can attain the goal of a:
Prompt, Peaceful, and Private Passing
For some to consider an oral Living Will legal, a physician or health care provider must write a “progress note” about it, in your medical chart. (Caring Advocates thus highly recommends both a written and an oral Living Will.) The professional who conducted the interview may be willing to state on video, an opinion about your “capacity” (competence) to make advance decisions for your future self.
Your oral and written Living Wills can drive the set of physicians orders known as POLST Paradigm forms that most states have approved.
How to create your Living Will by making “One Decision at a Time”:
A) First, sort the illustrated My Way Cards or Natural Dying Living Will Cards in a preliminary way by placing the cards/conditions into two stacks:
Stack One is “Treat & Feed;” and Stack Two is “Possibly Natural Dying.”
This process will teach you the range of symptoms, losses of function, unwanted behaviors, and conflicts with lifelong values that may confront you in Advanced Dementia and other terminal illnesses.
Recommended video: Living with Advanced Dementia—What it is really like for patients, loved ones, caregivers? A 14–minute glimpse of why many consider Advanced Dementia the most cruel, most burdensome, and most prolonged of any terminal illness—for patients, loved ones, and caregivers. (12/16/14) youtu.be/WXZAKtlE69s.
B) Sort the cards again into three stacks; this time according to “Treat & Feed”, “Natural Dying,” and “Consider Natural Dying.” For each condition:
- If you are sure you want others to try to keep you alive as long as possible, choose “Treat & Feed.”
- If you are sure you want others to allow you to die peacefully of your underlying disease, choose “Natural Dying.”
- If you are not sure now, select “Consider Natural Dying” so your surrogate decision-makers and others can evaluate you in the future and base their decision on the severity of the condition and how many similarly designated conditions you have.
C) This is a good time to discuss your treatment decisions with your physician, proxies/agents, loved ones and others. If you are reasonably sure about your decisions, then you are ready to record yourself on video. Remember, you can always change your mind as long as you have capacity. When you are ready, Contact Caring Advocates to arrange for an InterviewByInternet.com with a health care provider who may also provide a professional opinion about your capacity (competence).
Just before your interview, review this detailed recommended way to make “One Decision at a Time”Continue Reading
The interviewing professional will also remind you of these guidelines and prompt you as needed.
Respond in four ways to each card/decision: “Read & Describe; then Decide & Explain” (RDDE):
- Read the words on each card for each condition.
- Describe what is going on in the illustration.
- Decide about treatment by expressing your judgment for one of these options, “Treat & Feed,” “Natural Dying—Enough,” and “Consider Natural Dying”—unless the condition does not apply to you, in which case you can skip it.
- Explain why your decision/judgment is right for your life values, and your treatment goals and preferences. Add any relevant details you want your surrogate decision-makers to consider about this condition, such as how often or how severe this condition should influence their decision.
How to make this recording: You can arrange an in-person, office visit with a health care professional since Medicare will pay for physicians, social workers, nurse practitioners, and perhaps psychologists (but not chaplains, yet). You can also pay out of pocket to avoid the cost and inconvenience of traveling. Consider this: the cost of effective planning can be a very small fraction of the total cost of the harms and burdens of many terminal diseases—after treatment can only prolong the process of dying without providing you much, if any, benefit.
What else should you record? A concise statement regarding whether or not you want emergency medical personnel and physicians to attempt cardio-pulmonary resuscitation (CPR). Research is ongoing to determine if such recordings lead to more accurate interpretations by emergency medical personnel and physicians, which is extremely important since these treatment decisions may be life-determining. You may also want to consider other choices in addition to “FULL” CPR or “NO” DNR, such as Natural Dying.
1. The report eschewed merely checking boxes or initialing choices on paper Living Will forms. [See the full report at: Dying in America, Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press, and is available for free at www.nap.edu/catalog.php?record_id=18748, especially page 155 (3-38).]