STEP ONE: The cards describe in words and line drawings what it is like to live in Advanced Dementia and other terminal illnesses—for you and your loved ones.
EASY: Sorting these cards is EASY: You make just one decision at a time. The cards use almost no medical jargon. After you judge for each condition, what treatments you would, or would not prefer, you memorialize your choices in your Living Will.
Diligent and Respectful: How will treatment decisions be made in the future? By “shared decision-making.” Your physician evaluates your condition; your proxy/agent presents your judgments in your Living Will; others—family members, counselors, and/or an authority on your religion—can optionally provide additional input.
Effective: Vague Living Wills do NOT describe particular conditions or specific interventions. They leave the door open to conflicts that could be prolonged, especially if they escalate to a court of law. You may then suffer longer because To Delay is To Deny. Combining a clear and specific Living Will with a video of you explaining your Known Wishes can be clear and convincing enough to close the door to conflict.
Safe: Up to four out of five physicians unintentionally misinterpret Living Wills as DNR orders. Patients who are critically ill and who want CPR, may not get it—unless they add clear instructions in their Living Wills.
Why is it important to sort the cards a second time.
There are two reasons to repeat the process in about a month:
- Think again after reflection and discussion with others.
- Prove your decisions are mostly consistent over time.
Both may prevent future challenges that claim you might have not really known what you were deciding, or that you have since changed your mind.
Can you change your mind? Yes, as long as you possess mental capacity to make end-of-life treatment decisions.
What might change? Your diagnosis; getting older: further reflection on your goals of treatment; a change of relationships; and further direct experience, reading or discussions with others.
We highly recommend you review and update your decisions about one year later.
As a member of Caring Advocates, you can submit your choices for an “UPDATED FINAL” Natural Dying—Living Will any time.
Important: When you sort the cards, you will be asked to indicate how strictly you want your future proxy/agent and your treating physician to follow the wishes you expressed.
How to submit your personal sorting choices from a Natural Dying Living Will Cards / My Way Cards wallet card or My Decisions Table
Differences between Natural Dying Living Will Cards and My Way Cards
Would you like more information regarding the differences between My Way Cards and Natural Dying Living Will Cards?
Before describing the differences between Natural Dying Living Will Cards and My Way Cards, consider what these two versions of Caring Advocates’ Advance Care Planning tool have in common: Both offer 48 cards that describe the common symptoms, losses of function, unwanted behaviors, and conflicts with lifelong values often seen in Advanced Dementia and other terminal illnesses.
Realize that the 48 cards in both versions are identical.
Hence, your unique, personalized Natural Dying—Living Will that sorting the cards will generate can be the same—regardless of which version you select.
A general guide:
Natural Dying Living Will Cards are for those who want to be sure they are following the teaching of their religion. (Article: How the Natural Dying Living Will works for religious observers)
My Way Cards are for those who wish to prioritize their autonomous right to self-determination.
Those who might prefer My Way Cards are not likely to be offended by its Ten Moral Guidelines, which are copied below, but those who would prefer the Natural Dying Living Will Cards might read about some options that their religion clearly states are not acceptable.
There are two introductory, information-laden cards that are MOST different between the two versions. There are as well, a few other differences. For example, the Natural Dying Living Will Cards use the phrase, extraordinary and disproportionate when referring to judging treatment, while the My Way Cards only use the secular equivalent:“the likely risks and burdens of treatment would outweigh the expected benefits.”
Natural Dying Living Will Cards
include this card instead of the one on the following page:
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“My Way Cards” include this page instead of the one on the previous page:
Can “Natural Dying” Honor a Person’s Last Wishes?
Many people fear that advances in modern medicine and/or the actions of well-meaning loved ones may prolong their dying as they suffer more.
Some hope that law makers in their state will legalize Physician-Assisted Dying.
Some point out that dogs can die peacefully when injected with a lethal dose of sedatives.
But this difference is huge: people must take the lethal potion orally, that is, by mouth.
Sometimes the drug goes down the wrong tube (into the lungs); or the drug is not absorbed by the sick person’s stomach and gut; or the patient may throw up (vomit) the drug.
So dying can take much longer than expected.
A few people have even slept a few days and then awakened, only to continue suffering.
According to every law, to receive Physician-Assisted Dying, patients’ minds must be sound.
So Advanced Dementia patients cannot receive Assisted Dying.
But they CAN die if they totally fast from all food and fluid.
Where Physician-Assisted Dying (PAD) is legal, dying patients whose minds are alert can choose either way.
Dr. Ganzini’s research showed that Voluntary Refusal of Food & Fluid (“Natural Dying”) is slightly more peaceful than Physician-Assisted Dying and a “good” way to die (using a research scale).
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If two weeks sounds like a long time, consider these practicalities in states where it is legal:
It can take 17 days from initial request to final receipt of a lethal dose of medication.
In rural areas, it can be hard to find two physicians to agree to your plan, and one to write the prescription.
Some patients cannot take the medication without assistance, but assistance is likely to be considered ILLEGAL.
Other patients are so sick that they cannot swallow anything, including the lethal dose of medication.
Yet fasting can allow almost any patient to die.
Note that the cause of death is NOT starvation, but medical dehydration.
Aside from these practicalities, five important reasons lead many to prefer “Natural Dying” over Physician-Assisted Dying:
1) Alert patients can use this last opportunity to exchange meaningful, healing goodbyes with their loved ones.
2) Patients have several days to change their minds and then continue living--by merely starting to eat and drink, again.
3) The patient’s consistent refusal of food and fluid can assure loved ones that “this was the right time”--so they have less emotional stress.
4) The physicians’ moral toll is much less when his/her intent is only to reduce suffering rather than to directly and intentionally act to hasten dying by writing a prescription for a lethal dose of medication. Thus, it is much easier to find a physician who will cooperate with Natural Dying than with Physician-Assisted Dying.
5) Finally, no law needs to change since it is already legal for a patient to refuse all food and fluid. Still, there can be challenges. But these can be overcome by adding the recommended “ironclad strategies.”
Consensus for Substituted Judgment
Even for patients or loved ones who reach an advanced stage of dementia without a clear and specific Living Will, their surrogate decision-makers may be asked to make life–determining decisions. Using the cards for a Consensus for Substituted Judgment is an alternative that usually works.
Usually this is several people who really knew the patient well, before she became too ill to speak for herself, can sort the cards by imagining they are making decisions as the patient would have made when she was well and had capacity. Their consensus of opinion can then help guide future surrogate decision–makers.