Hospice Blog has a good post on the”Will to Live” document which is being promoted by the “National Right to Life Committee” as an alternative to living wills. The document is essentially an advance directive that demands the most aggressive treatment possible in all cases. It has apparently been getting big play in conservative Catholic circles, although its tenets go beyond official Catholic teachings; it is also causing some concern among hospice providers. Close examination demonstrates it is not merely “pro-life” but bizarrely extremist, misleading, and deliberately manipulative.

There are state-specific versions of the document available, with instructions and formats conforming to requirements in each state. The substantive content of the forms is largely the same except where state laws specify certain wordings. As living wills go, it is usable, although the pre-written text includes many demands for treatment and other directions that a more neutral living will would leave up to the patient’s disrcretion. The standard text reads, among other things:

GENERAL PRESUMPTION FOR LIFE

I direct my health care provider(s) and health care agent to make health care decisions consistent with my general desire for the use of medical treatment that would preserve my life, as well as for the use of medical treatment that can cure, improve, or reduce or prevent deterioration in, any physical or mental condition.

Food and water are not medical treatment, but basic necessities. I direct my health care provider(s) and health care agent to provide me with food and fluids orally, intravenously, by tube, or by other means to the full extent necessary both to preserve my life and to assure me the optimal health possible.

I direct that medication to alleviate my pain be provided, as long as the medication is not used in order to cause my death.

I direct that the following be provided:
- the administration of medication;
- cardiopulmonary resuscitation (CPR); and
- the performance of all other medical procedures, techniques, and technologies, including surgery,
— all to the full extent necessary to correct, reverse, or alleviate life-threatening or health-impairing conditions, or complications arising from those conditions.

I also direct that I be provided basic nursing care and procedures to provide comfort care.

I reject, however, any treatments that use an unborn or newborn child, or any tissue or organ of an unborn or newborn child, who has been subject to an induced abortion. This rejection does not apply to the use of tissues or organs obtained in the course of the removal of an ectopic pregnancy.

I also reject any treatments that use an organ or tissue of another person obtained in a manner that causes, contributes to, or hastens that person’s death.

The instructions in this document are intended to be followed even if suicide is alleged to be attempted at some point after it is signed.

I request and direct that medical treatment and care be provided to me to preserve my life without discrimination based on my age or physical or mental disability or the “quality” of my life. I reject any action or omission that is intended to cause or hasten my death.

Further down are spaces where the patient can offer specific directions of their own. These are left as blank lines under headings such as “When I Am Terminally Ill” and “When My Death Is Imminent”, except for a separate section entitled “When I Am Pregnant”, which contains only a boilerplate paragraph invalidating the previous directions and demanding any possible treatment to save the fetus, no matter how extreme. This section stipulates that the patient may only be treated to preserve her own life, if it would cause a risk to the fetus, if a separate signature is entered in a special box for that purpose – a requirement that does not exist under state laws. (Some states invalidate living wills entirely for pregnant women, but that’s another issue.) So, patients who only execute the legally validating signature at the bottom of the form, but overlook the pregnancy clause or think they don’t need it, will be trapped into inescapable treatments they may not want if the form is activated while they are pregnant – not because they made such a choice or the law imposes it, but because of the whim of the people who wrote this form. And the form offers no option whatsoever for the woman to choose to prioritize her own life over that of the fetus.

IF I AM PREGNANT

Special Instructions for Pregnancy. If I am pregnant, I direct my health care provider(s) and health care agent to use all lifesaving procedures for myself with none of the above special conditions applying if there is a chance that prolonging my life might allow my child to be born alive. I also direct that lifesaving procedures be used even if I am legally determined to be brain dead if there is a chance that doing so might allow my child to be born alive. Except as I specify by writing my signature in the box below, no one is authorized to consent to any procedure for me that would result in the death of my unborn child.

[Note: the below is set in a separate, bordered signature box:]

If I am pregnant, and I am not in the final stage of a terminal condition as defined above, medical procedures required to prevent my death are authorized even if they may result in the death of my unborn child provided every possible effort is made to preserve both my life and the life of my unborn child.

___________________________________
Signature

In addition to the “presumption for life” that pervades the form, there is a distinctly paranoid tone to its text, and – as with the pregnancy clause – a clearly manipulative structure intended not only to make the “presumption for life” the default choice in every case, but to block individual patients’ dissenting choices on specific issues.

Regading the overall tone, the introductory text to the document reads, among other things:

The important thing for you to remember if you choose to fill out any part of the “SPECIAL CONDITIONS” sections of the Will to Live is that you must be very specific in listing what treatments you do not want. Some examples of how to be specific will be given shortly, or you may ask your physician what types of treatment might be expected in your specific case.

Why is it important to be specific? Because, given the pro-euthanasia views widespread in society and particularly among many (not all) health care providers, there is great danger that a vague description of what you do not want will be misunderstood or distorted so as to deny you treatment that you do want.

Many in the medical profession as well as in the courts are now so committed to the quality of life ethic that they take as a given that patients with severe disabilities are better off dead and would prefer not to receive either life-saving measures or nutrition and hydration. So pervasive is this “consensus” that it is accurate to say that in practice it is no longer true that the “presumption is for life” but rather for death. In other words, instead of assuming that a now incompetent patient would want to receive treatment and care in the absence of clear evidence to the contrary, the assumption has virtually become that since any “reasonable” person would want to exercise a “right to die,” treatment and care should be withheld or withdrawn unless there is evidence to the contrary. The Will to Live is intended to maximize the chance of providing that evidence.

It is important to remember that you are writing a legal document, not holding a conversation, and not writing a moral textbook. The language you or a religious or moral leader might use in discussing what is and is not moral to refuse is, from a legal standpoint, often much too vague. Therefore, it is subject to misunderstanding or deliberate abuse.

This is just barely-rational ranting, and it is quite jarring to find it in a document intended to help severely ill patients make their most personal, most significant, and most morally and emotionally fraught decisions. It is unimaginable that a responsible caregiver, talking through these issues with a patient, would say that “given the pro-euthanasia views . . . [of] health care providers, there is great danger that . . . what you do not want will be misunderstood or distorted”, that “[m]any in the medical profession . . . take as a given that patients with severe disabilities are better off dead”, or that your living will is likely to be “subject to . . . deliberate abuse.” This is not merely a bizarre distortion of ethical disputes within the professions, but flatly false – and deliberately intended to frighten patients. It is the most irresponsibly intrusive and abusive assault on the patient decisionmaking process I have ever seen in the context of something seriously intended as a part of that process.

In addition to frightening the patients, the form is also designed to prevent patients from making decisions the form’s authors do not approve of. Although the introductory text notes that “Some people may wish to continue certain types of medical treatment when they are terminally ill and in the final stages of life. Others may not”, the form itself makes dozens of specific demands and prohibitions with none of the usual checkboxes for patients to indicate whether they personally approve of them. The form simply stipulates what patients will get, and then allows a small amount of blank space near the end for the patients to write in other instructions.

The directions for using that blank space include the sensationalistic advice, in boldface, that: “After writing down your special conditions, if any, you should mark out the rest of the blank lines left on the form . . . to prevent any danger that somebody other than you could write in something else.” It is interesting to note that the form gives advice on avoiding the danger that some unknown person will write forged instructions in the blank spaces at the end, but simultaneously contains whole pages of instructions not written by the patient that the patient is expected to accept. Nowhere do the directions explain that patients have the right to cross out or edit the pre-written sections they do not agree with, or to come up with their own preferences. And, as noted previously, the section on pregnancy even creates a wholly unprecedented, legally unnecessaary, second signature requirement for the patient to save her own life if she chooses to do so. Note, finally, that the document specifies it supersedes any desire to die you may develop even after it is signed or after you actually attempt suicide – when, presumably, you are no longer “pro-life” in your own case, at least.

In short, the form is deliberately provocative and sensationalistic, false in parts and misleading in many places, and structured in such a way as to create impediments to patient’s ability to make choices the authors of the form do not approve of. It dictates choices that should be left to the patient, it obfuscates the patient’s authority to make their own choices, and in the case of pregnancy it explicitly prioritizes the life of the fetus over that of the patient and creates a completely unheard-of opt-in procedure for the patient to get access to treatment to save her own life. Like most “pro-life” activism, it is not intended to foster independent decision-making by autonomous individuals (as responsibly-designed advance directives do), but rather to limit options and impose choices made by the pro-lifers, for the patients without their consultation – and in the case of pregnant women, to put the fetus’s interests ahead of the womans and erect as many roadblocks as possible to the woman choosing otherwise. It is not the work of responsible and professional healthcare providers (but we knew that), but rather of activist hacks with a manipulative agenda. As written, it is possible for patients to use this form to get what they want out of end-of-life treatment (most obviously if what they want happens to closely match what the form’s authors have dictated to them), but it requires excessive diligence and extra effort to achieve the personal specificity that better-designed advance directive instruments inherently provide. No patient should have to repudiate material in an advance directive to make sure they are not trapped into irrevocable choices they did not make.

And Yet . . . There’s More . . .

Aside from all these problems, however, its marketing and potential impact are even more worrisome. There is discussion among hospice providers that the demand for active treatment in all circumstances, especially treatment “to the full extent necessary to correct, reverse, or alleviate life-threatening or health-impairing conditions”, would preclude admission to most hospice programs, which do not provide curative treatment. Certainly, patients whose conditions clearly are not compatible with aggressive treatment might be admissible to hospice under this document, on grounds that no curative treatment is possible for them, so none is required. But other patients will encounter a conflict if they have executed this document, decide to pursue supportive care in hospice, and then become non-competent while in hospice and their treatment instructions default to aggressive treatment because nobody has thought to edit the advance directive. (This may depend on state law regarding oral instructions from patients. It is not a coincidence that the same kinds of people who promote this form of advance directive are also lobbying to invalidate non-written advance directives.) As Hospice Blog puts it:

My gut says that the clauses the e-mail noted do not make it impossible for people to go on hospice, but they do make it harder. The majority of hospice patients go on hospice because there is no aggressive treatment available. This document seems to be saying that if there is something that can be done to cure me, then I want that done. To be honest, it’s rare to find a person who doesn’t feel that way. . . . This document keeps someone who has [aggressive treatment] options from receiving hospice, but doesn’t address . . . what to do when there are not other “aggressive” options.

In addition, the document has reportedly been promoted by Catholic groups and “pro-life” groups. The “Hospice Patients Alliance” – a “pro-life” hospice advocacy group whose Web site insists that euthanasia is rampant in hospices – links to it as one of several “protective” advance directives. A correspondent at Hospice Blog reports an article in a Catholic newsletter that explicitly stated that Catholics would be “out of communion” if they signed an ordinary living will or entered hospice care – claims which are flatly false under official Catholic doctrine.

Thus, the document is not merely manipulative and intrusive, and it does not merely contain false and distorted descriptions of healthcare and advance directives, but it has also become a chosen tool for the most extreme and idiosyncratic branches of the pro-life movement – the paranoids, the religious fanatics, and the delusionals.

Just what we need.

Hat tip: HealthProf Law Blog