1. Complete a clear and specific Living Will to speak effectively for you—if you cannot speak for yourself

My Choice Card A states another person should always try hard to provide hand-feeding and drinking. Why do people select “A”? Here are some examples:  Some want to live as long as possible—regardless of how much they may be suffering themselves or have become a burden to others. They may feel life is always precious or they may be afraid of dying. Many others want to faithfully follow their religion’s teachings that their advisors interpret as making Choice “A” morally obligatory.

Making sure others will honor Choice “A” can be challenging. That is because physicians sometimes deny treatment that they judge to be non-beneficial. So the National Right to Life organization and Robert Powell Center for Medical Ethics recommend Living Wills that avoid vague language that could be misinterpreted. Instead, they suggest you be specific as you “describe the treatment you do, and do not want to guide your health care agent and physicians.” They advise this can “relieve the agony of decision making for them by making your wishes clear” and “protect your family and health care agent from pressure from health care providers and others by allowing them to prove what you really did want.”

Caring Advocates agrees entirely with the “specific approach.” We recommend you complete a Living Will that states your wishes in a clear and specific way and that defines your proxy/agent’s role as only to make sure others honor your Known Wishes, rather than to make decisions for you. Caring Advocates goes one significant step further than National Right to Life and Robert Powell Center: We help you set up a strategy designed to compel others to honor your wishes. While the majority of people who use the Natural Dying Cards want to make sure their dying is not prolonged, it may turn out that using Natural Dying Cards plus selecting My Choice Card A and other strategies is the most effective way to make sure patients are never denied food and fluid—if that is what they want.

My Choice Card B lets your proxy/agent make all final treatment decisions for you. This selection can be appropriate for patients who are members of certain cultures or religions where for example, the tradition is that designated elders make end-of-life decisions on behalf of patients. Selecting “B” is also appropriate for those who prefer not to think about dying and not to think about make life-determining decisions. Some may prefer to select proxies/agents based on their greater experience and knowledge… and hope they will make better decisions than they could themselves. Still others feel they cannot predict the future, and would rather trust others to make these irreversible decisions contemporaneously. In such cases, the preferences that patients previously indicated by sorting Natural Dying Cards can still serve to guide their proxies/agents.

Selecting My Choice Card B is appropriate for individuals only if they do not feel even one of the 48 conditions would definitely be “Treat & Feed” or would be “Natural Dying.” They must be willing to trust the final decision about every condition to their proxies/agents. Also, they must make sure they can trust more than one person—just in case their first choice proxy/agent is not willing, not available, or not capable of making these decisions when the time comes. Otherwise at worst, a court may appoint a guardian or conservator who doesn’t know the patient well. Regarding their proxies/agents: the responsibility placed on them could create an extra emotional burden compared to patients who make decisions themselves for the majority of these 48 conditions.

My Choice Cards C and D share an unusual characteristic among Living Wills: Both choices provide for two kinds of leeway. To define and to explain the concept of “Leeway”:

This is an instruction in some—actually, in a minority—of Living Wills, which states how strictly the person wants others to follow the instructions in that Living Will. Example: Grant my proxy/agent complete general leeway so that she can decide to continue life-sustaining treatments if I can expect another grandchild soon (or a similar event), or if a new experimental treatment just became available—even if I meet my own criteria to forgo all life-sustaining treatment.

Both My Choice Cards C and D divide treatment decisions into three categories; two categories have zero leeway and one has 100%: “Treat & Feed” and “Natural Dying” have zero leeway, which makes your decisions irrevocable for those conditions. The other category is “Consider Natural Dying,” which makes leeway 100%.

The difference between C and D focuses on one significant situation about which bioethicists have long argued. Suppose the time came for Natural Dying based on your judgments about the conditions that currently affect you. Then, after Natural Dying begins, your “future demented self” indicates in some way that you still want help with hand-feeding and drinking. Cards C and D resolve this conflict in different ways. In C, the contemporaneous request of your incompetent (lacking capacity) “future demented self” rules. In D, the statements you previously made in your Living Will while competent rules. For D to work legally, it is important that you sign a witnessed waiver that empowers your proxy/agent to override your contemporaneous expression of your desires. Otherwise, your local law or a judge may rule in favor of the decision by your “future demented self.”

How do you choose between C and D? My Choice Card “C” seems appropriate to those who love food and/or feel that feeding is one way to express love. But they should also consider that putting food and fluid in a dying patient’s mouth—even if they swallow—could increase and prolong their end-of-life suffering. Many patients lose complete interest in food and fluid as they are dying and some experience direct harm from being fed. Most Advanced Dementia patients cannot communicate their preferences or their experience of discomfort. For some, this conclusion is a myth: “If she can swallow, she must want to swallow.” The alternative is clearly that she does not know how to say or even to indicate, “No.”

“D” seems appropriate to people who realize that near the end of their lives, Advanced Dementia patients will lack capacity so they will no longer really have a mind that can change; that is, they will no longer understand or appreciate the consequences of asking for food and fluid to be put into their mouths, which may increase and prolong pain and suffering and continue being a burden to others, while they receive little, if any benefit. Unfortunately, pain and suffering are likely to increase more as dying is prolonged if physicians fail (and they often do) to recognize their pain and suffering. Some people realize that Advanced Dementia patients’ requests for food and fluid may only be an act of habit or curiosity. Their minds cannot weigh the mild degree of pleasure from tasting puree food versus the possible harm and burdens. Finally, selecting My Choice Card D makes the “Ironclad Strategy” more powerful because this logic can apply: If patients were so certain they wanted the goal of a timely and peaceful transition that they disqualified their “future demented self” from being able to sabotage their plan for Natural Dying, then they would clearly not permit anyone else—no matter how well meaning or closely related they are—to have the power to sabotage their plan.  

A few final notes:

This is not an easy decision. Consider discussing it with people whose opinions you trust and respect. If you have not done so already, view the 14-minute video, Living with Advanced Dementia—What it is really like for patients, loved ones, caregivers?  youtu.be/WXZAKtlE69s?list=UUSYPBA9b_-26RCVY0Ps3Vog

Also, regardless of what you decide, know that you can always change your mind—as long as you have capacity.