Advance Directive: Protecting Yourself and Your Family (Part 2)

Euthanasia, Assisted Suicide & Health Care Decisions:
Protecting Yourself & Your Family


by Rita L. Marker

PART 2

My neighbor said she had to sign a Living Will when she went into the hospital. Is this true?

My mother needs nursing home care. When she started to fill out the paperwork, she was told she had to have an advance healthcare directive. Is that true?

I don’t need an advance directive. If I can’t make my own healthcare decisions, doesn’t my husband have the authority to do that?

If I’m in the hospital and I say I want to have a certain type of medical treatment, the hospital can’t deny it to me. Isn’t that right?

My son is in college. If he’s in an accident and can’t make medical decisions for himself, don’t I have the right to make those decisions?

Aren’t advance directives only necessary for people who are elderly, or very sick? (1)

Having the answer to these types of questions is important. Sometimes they can make the difference between life and death.

WHO MAKES MEDICAL DECISIONS?

If you are an adult reading this report, you have the right to make your own medical decisions. However, a few hours from now, if you decide to drive to the store and are in a serious car accident that leaves you temporarily or permanently unable to make those decisions, who will make them for you?

The answer to that will depend upon whether you have an advance healthcare directive. An advance directive is a document by which individuals make provisions for healthcare decisions in the event that, in the future, they are unable to make those decisions for themselves.

ADVANCE DIRECTIVES

Decision-making for incapacitated individuals in the absence of an advance directive

Most people who have had personal experience dealing with health care for an incapacitated loved one have not had legal difficulties. That’s because, traditionally, healthcare providers have turned to the next of kin for decision-making. If there is agreement between the decision-maker and the doctor, and if there are no objections from other family members, everything generally goes smoothly. But, when there are disagreements, the results can be heart-wrenching.

Over and over, during the coverage of Terri Schiavo’s tragic death, television “experts” pronounced that, in cases like hers, when a person hasn’t left written directions about health care, all states have laws giving decision-making authority to the spouse. That sounds logical. But it’s not accurate.

Forty states and the District of Columbia do, indeed, have laws specifying who can make decisions for a patient who does not have an advance directive. In many – but not all – of those states, a spouse is designated as first in priority, followed by adult children, parents, and siblings. Other states have different procedures for deciding who will speak for a patient.

For example, in Tennessee, the supervising healthcare provider selects the decision-maker after giving consideration to the patient’s spouse, adult child, etc. (2) Similarly, in Indiana, any of those listed (spouse, parent, adult child, sibling, etc.) can decide for the incapacitated patient. (3) West Virginia gives the patient’s attending physician or an advanced nurse practitioner the right to select the decision-maker from the priority listing based on who the physician or nurse believes would be the best decision-maker. (4) Thus, if the doctor doesn’t agree with the patient’s spouse about what should or should not be done, that physician can designate someone else (a parent, sibling, or close friend of the patient) as the decision-maker. And then there’s Connecticut where decision-making is left to the physician in consultation with the next of kin. (5) Note that this means only that the next of kin must be consulted. It does not mean that there must be agreement. Essentially, the doctor calls the shots.

In California, a patient can orally designate someone to make decisions when treatment begins. That designation is in effect only during the course of treatment or illness, or during the stay in the healthcare institution where the designation is made, or for 60 days, whichever period is shorter. (6) That’s of little help, however, if the patient is not conscious when admitted for care.

Contrary to what was said so often during the Schiavo case, Florida law does not give first priority to a spouse, but to a court-appointed guardian. (7) A spouse is second to a guardian on Florida’s priority list. Although Michael Schiavo was Terri’s husband, his authority to remove her food and fluids came from his status as her court-appointed guardian.

Very soon after Terri’s brain injury, Michael petitioned the court to be named her guardian. If one of her parents or siblings had opposed Michael’s appointment at the time, or if any of them had sought to become her guardian, it is possible that one of them, rather than Michael, may have become Terri’s decision-maker. Whether a legal guardian is appointed and who that guardian is falls solely within the discretion of the court. Technically speaking, the court could even have appointed a guardian who was a complete stranger to make decisions for Terri.

Even if a person happens to live in a state in which the priority list gives authority to the person that they would prefer to have as a decision-maker, that priority list is only effective while in that state. Therefore, if a person is traveling in another state and is in a car accident there, leaving him temporarily or permanently unable to make medical decisions, the law in the state where the accident occurred will control.

Having an appropriate, carefully drafted advance directive (of the right type) is the only way to be certain that the person you want to make decisions for you will have the authority to protect you.

So how can people make certain that their values are respected, their lives protected, and their medical care is provided in a manner that they would choose?

Does it mean, as so many experts advise, that everyone should have a living will? If, and only if, the term, “living will,” is used generically to refer to an advance directive, the answer is “yes.” Frequently, lawyers and others who should know better call any type of advance directive a living will. But there are major differences between the types of advance directives. All living wills are advance directives, but not all advance directives are living wills.

The Living Will

The living will is the oldest type of advance directive. It is a signed, witnessed (or notarized) document, sometimes called a “declaration” or “directive.” Most living wills instruct an attending physician to withhold or withdraw medical interventions from its signer if he has a terminal condition or is in a permanent vegetative state. Since the document is so vague and the attending physician may be unfamiliar with the signer’s views and values, the document can be interpreted by the physician in a manner that was not intended by its signer. The Washington state case of Mary Jo Estep provides a stark example of this:

Mary Jo Estep, a very active retired schoolteacher, broke her hip. As part of her rehabilitation, she checked into a nursing home where, on admission, she signed a living will that stated she was not to receive extraordinary measures if she was dying. A few days before she was to go home, a tired nurse gave Ms. Estep the wrong medication – a mistake that could have been reversed easily at a local hospital emergency room. But that didn’t happen.

Instead, a doctor wrongly interpreted her living will to mean that Ms. Estep would not want treatment. By evening, Mary Jo Estep was in severe distress, with her blood pressure falling and pulse weakening. She died that night.

Legal experts in Washington later said that Ms. Estep’s case fell into the murky and untested realm of state law. Eventually, the case was resolved when the nursing home was fined $2,500 for a medication error. (8)

Mary Jo Estep’s case is unusual but not unique. Other cases of overly broad interpretations of living wills take place day after day. Yet, the problems with the living will should not deter people from having a different type of advance directive.

The Durable Power of Attorney for Health Care

The most protective and the most flexible type of advance directive is the durable power of attorney for health care. With this type of document you designate someone else to make healthcare decisions on your behalf if you are ever temporarily or permanently unable to make those decisions for yourself. The person you name is usually called an “agent,” although some states refer to this individual as an “attorney-in-fact,” a “healthcare proxy,” a “healthcare representative,” or a “healthcare surrogate.”

The person you name should be an adult who shares your views and values. This may, but need not be, a family member. It is also important that that person have the ability to be assertive when necessary. He or she should be a person who will be open to receiving necessary information and who will not be intimidated by a physician or ethics committee who may hold different views.

When you are able to make your own decisions, it is the responsibility of your healthcare providers to let you know your diagnosis, to give you information about possible treatments, as well as the risks and benefits associated with those treatments. Then, it is up to you to give or withhold consent based on that information. When you are not able to make your own decisions, the person you have named as your agent stands in your shoes. The doctor gives your agent the same information that would have been given to you and then, based on your prior discussions with your agent regarding your wishes and values, your agent gives or withholds consent for treatment on your behalf.

Because the durable power of attorney for health care is a legal document, it is important that you have one that is carefully drafted since every word takes on a legal meaning.

Some durable power of attorney for health care documents – even those that have been drafted by well-meaning organizations – contain blank lines where the signer is directed to “fill in your additional wishes.” This can present significant problems since the signer may write in words that have a legal meaning that differs from his or her intent. For example, a signer may write that she doesn’t want life-sustaining treatment “if death is imminent.” But what the signer meant by “imminent” might be death is going to occur in several days when, in fact, some states and some healthcare facilities interpret “imminent” as meaning up to one year! It is best to treat documents with fill-in-the- spaces or check boxes as well-meaning, but potentially problematic, documents.

It is not necessary, advisable, or even possible to write everything down about your wishes. There is no way any one of us can envision every possible condition, treatment, or situation we could face at any time. The most important thing is to maintain communication with your agent about your wishes as they change from time to time. Sometimes what we want now may be different than what we wanted five years ago.

Since requirements for a valid durable power of attorney for health care differ from state to state, your document must comply with the law in your state. Some states require that the documents be witnessed. Others require that they be notarized, while yet others may permit either. Some states require that specific warnings or notices be included in any preprinted forms. Others do not.

If your durable power of attorney for health care is valid when you sign it in your home state (the state where you are registered to vote or where your driver’s license is issued), it will be honored in other states when you are traveling.

Having a carefully drafted durable power of attorney for health care is the only way to be assured that someone who has your best interests in mind will be making your medical decisions if you are ever unable to make those decisions for yourself.

That’s why the ITF formulated the Protective Medical Decisions Document (PMDD).

The Protective Medical Decisions Document (PMDD)

The PMDD is a carefully drafted durable power of attorney for health care that has been designed to meet state requirements and to protect the signer.

It limits your agent’s authority in only one specific way, clearly stating that your agent does not have the authority to approve the direct and intentional ending of your life. For example, your agent may not authorize that you be given a lethal injection or an intentional drug overdose. Furthermore, your agent may not direct that you be denied food or fluids for the purpose of causing your death by starvation or dehydration.

That limitation not only protects you, but it also protects your agent from being pressured to authorize such actions.

The PMDD also has specific directions that are necessary in the current medical climate. For example, some healthcare providers have taken it upon themselves to put “do not resuscitate” (DNR) orders in place without the patient’s or agent’s authorization. Similarly, some healthcare providers, ethics committees and health facilities are making decisions about what is “appropriate,” “beneficial,” or “futile” based on institutional cost-containment or subjective quality-of-life decisions, not on the basis of what is best for or wanted by the patient.

The PMDD makes it clear that DNR orders and decisions about what is appropriate, beneficial or futile are to be made only by your agent and only if your are unable to make those decisions.

There is another aspect of the PMDD. As noted above, some states have very specific requirements for a durable power of attorney for health care. That is why the ITF distributes state-specific PMDDs for those states as well as a Multi-State PMDD for use in other jurisdictions. (9)

With the benefits of the durable power of attorney for health care in mind, questions remain: “Can a person be required to sign an advance directive?” “Who needs an advance directive?” “Must a healthcare provider honor all decisions made by a patient or a patient’s decision-maker?”

Can a person be required to sign an advance directive?

Federal regulations require every hospital or health program that receives any Medicare or Medicaid funds to inform patients, upon admission, of their rights regarding advance directives (10) and include documentation in the patient’s record whether or not the individual has an advance directive. (11)

As a result, some facilities, particularly nursing homes, erroneously tell patients that they must have an advance directive. And many facilities assume that they are required to offer patients an advance directive (usually a living will) to sign at the time of admission – when the patient is naturally under stress and is filling out a myriad of other paperwork. Sometimes patients who are anxious to complete admission procedures sign every paper placed before them. This could result in signing a living will without even realizing it until it’s too late. That’s why it is extremely important to carefully read documents before signing them.

Although it is certainly prudent to have an advance directive, both federal (12) and state laws (13) prohibit health facilities from requiring anyone to sign an advance directive.

If you or a loved one are told that an advance directive must be signed before care and treatment can be given, courteously but firmly explain that such a requirement is a violation of the law.

Recognizing that you cannot be compelled to have an advance directive is important. Knowing who needs an advance directive is equally important.

Who needs an advance directive?

Many people assume that only the sick and elderly need advance directives. But few people are aware that a carefully drafted durable power of attorney for health care is vital for every adult – young or old, healthy or sick, disabled or able-bodied.

For example, pregnant women assume that, if a medical emergency or a traffic accident leaves them temporarily unable to make their own medical decisions, their spouse or next of kin automatically has the authority to do so. As explained above, in the section titled “Decision-making for incapacitated individuals in the absence of an advance directive,” such assumptions are, at best, naive.

A pregnant woman who signs a durable power of attorney for health care like the PMDD is protected because she has given legal authority to someone she trusts, someone who knows and agrees with her views and values. The person she has designated can protect her life and that of her unborn baby during any time she is not capable of making medical decisions. The document would remain in effect even after the birth of her child, unless she revokes it.

Planning in advance for a new baby includes not only buying a crib, diapers and all of the other necessities, but also a protective durable power of attorney for health care for the expectant mother.

Similarly, parents of college students take it for granted that, if they are paying for their child’s medical care, they always have the right to make medical decisions for a son or daughter who is temporarily or permanently unable to do so.

But it is possible that, in the absence of an advance directive, parents of an ill or injured college student may not even be able to obtain basic information about their child’s condition. Ever since the federal Health Insurance Portability and Accountability Act (HIPAA) went into effect, some health facilities have refused to provide information to anyone – even family members – about a hospitalized adult (anyone over 18 years of age) unless the patient has given written consent.

However, the person who is designated in a durable power of attorney for health care does have the right to such information.

Young adults can designate a parent to make medical decisions so that, in the event of a sports injury, illness or accident, someone who knows and loves them will have the authority to protect their lives and well being. That’s why a protective durable power of attorney for health care like the PMDD should be one of the necessities of dorm life.

People have fire insurance even though their houses may never burn down. Likewise, competent adults should have a protective advance directive even though they may never be unable to make healthcare decisions for themselves.

Must healthcare providers honor all decisions made by a patient or a patient’s agent?

No. A healthcare provider or organization may decline to carry out healthcare decisions made by a patient or a patient’s designated agent if the provider conscientiously objects to such care or treatment. However, federal law requires that the patient or the patient’s decision-maker be provided with written policies at the time of admission of any limitations on carrying out such decisions, including the range of medical conditions or procedures affected by the conscience objection. Additionally, the notification must cite state law that relates to permitting those limitations. (14)

On occasion, healthcare providers implement what have become known as “futile care” policies. Under such policies, the provider may determine that a particular treatment is not appropriate for a patient.

There would not be a problem if such policies addressed treatments that were physiologically futile. (e.g., If a patient decides that her left arm should be amputated to improve her eyesight, the decision would be physiologically futile.) But, with increasing frequency, futile care policies are being applied to patient’s whose very lives are considered futile. (15)

Additionally, there have been cases where healthcare staff has made mistakes, necessitating treatment that the facility subsequently declares to be futile treatment.

For example, in a current Texas case, a young woman who had undergone a Caesarean section developed complications. According to court papers filed on her behalf, a tracheal tube was inserted to allow her to breath. The breathing tube became dislodged, interrupting her oxygen intake, but nurses failed to notice this until she was unresponsive and had sustained brain damage.

Two weeks later, the hospital futility review committee decided that life-sustaining treatment was futile and informed the family that it would be removed in ten days.

The family’s attorney told the Houston Chronicle, “This care raises questions of whether the law might be used to bury mistakes.” (16) At the time this report is being written, the facility had agreed to drop its plans to stop treatment and to help the woman’s family seek a long-term care facility where the woman would be transferred.

Texas law is the most draconian regarding “futile care.” It permits a hospital committee to decide that a patient’s care is futile. Following that finding, the patient or decision-maker has ten days, during which the “futile care” must be provided, to find another facility that will take the patient. If another facility cannot be found within that time, the facility may withdraw the “futile care.” (17)

Because of cases like this, Texas lawmakers are expected to consider changing the law in the upcoming legislative session.

Most other states, as well as Texas, do permit healthcare providers to refuse to honor a patient’s decision or that of the patient’s designated decision-maker. But, as noted above, under federal law, the healthcare provider in every state must inform the patient or decision-maker of such policies at the time of admission.

Often, healthcare providers do not follow federal requirements. Instead, they attempt, by intimidation, to force a patient or decision-maker to accept the provider’s decision. That’s why it is necessary to know your rights, to insist that the law be followed and, if necessary, engage legal counsel. Frequently, a discussion with a friendly local news reporter can serve as a catalyst that leads the healthcare provider to “remember” to follow the law.

IF IT’S LEGAL, IS IT ETHICAL?

Not necessarily. Consider this:

On the night of March 13, 1964, 28-year-old Kitty Genovese was murdered as she was returning home from work. Hers was certainly not the first, nor was it the last, murder in a quiet middle class New York neighborhood. But, within weeks, her name became known across the country. The circumstances of her brutal killing gave rise to what is called the “Genovese Syndrome,” and articles are still written about her death.

As Kitty Genovese was struggling to escape her attacker, she screamed, “Oh, my God, help me. Please help me.” She ran. She stumbled. She tried to fight off her attacker. As all of that was going on, lights went on and windows opened in the buildings along the street.

Later, it was determined that more than 38 of her neighbors looked on as she was stabbed over and over. Not one of them picked up a telephone to call the police. It was even reported that one couple pulled chairs up to their window to watch. (18)

Kitty Genovese’s neighbors became the targets of public outrage and symbols of public apathy. But they were not prosecuted.

Even though a simple phone call from any one of them could have saved her life, the neighbors did nothing illegal. But what they did was certainly unethical.

There is a very big difference between what is legal and what is ethical.

Today, when discussing medical treatment and care, there is also a distinction between what is legal and what is ethical. Nowhere is this more evident than in the debate over the provision of food and fluids.

THE FOOD & FLUIDS DEBATE

Background

In 1983, reflecting on the possible outcome of the “food and fluids debate” that was just getting underway, Daniel Callahan, who was then the director of the Hastings Center, wrote that “…a denial of nutrition, may, in the long run, become the only effective way to make certain that a large number of biologically tenacious patients actually die.” He further predicted, “Given the increasingly large pool of superannuated, chronically ill, physically marginal elderly, it could well become the nontreatment of choice.” He noted, however, that there was still a “deep-seated revulsion” to withholding or withdrawing food from patients. (19)

It took only months for that deep-seated revulsion to begin to dissolve.

Is tube feeding new, expensive and risky?

Since the 1980s, much has been said and written about the provision of food and fluids by means of a tube. In virtually every discussion of tube feeding, some commentator or “expert” declares tube feeding to be an extraordinary means of keeping people alive with new, expensive, and risky medical technology.

Writing in the March 1984 Seminars in Neurology, Dr. Ronald Cranford claimed, “Two or three decades ago it simply was not possible to deliver fluids and nutrition by the artificial route to patients with severe brain damage, since these techniques had not yet been developed.” (20)

Cranford was wrong.

Tube feeding, sometimes called “artificial feeding,” has been in common use for more than 100 years. Two articles, published in the 1896 Transactions of the Kentucky Medical Society, described the ease with which feeding by gastrostomy tube (g-tube) was being accomplished at that time.(21)

The food, placed in a feeding tube, is not expensive. A full day’s supply generally averages under $10. Nor is it exotic. One type of liquid nutrition used in feeding tubes is sold in virtually every supermarket. Called Ensure, it comes in a variety of flavors from vanilla to butter-pecan, and can be consumed as a meal replacement for people on the go or put in a feeding tube.

If it is a quick meal for anyone, how can it be an “extraordinary medical treatment” when it is placed in a feeding tube? If food placed in a feeding tube becomes medical treatment, does that mean that penicillin or aspirin become food when taken by mouth?

Some claim that insertion of a g-tube is a very risky surgical procedure. However, they are mistaken. A Massachusetts case indicates that depiction of risk may depend very much on the social status of the person involved:

Ninety-two-year-old Mary Hier had lived in mental hospitals for more than half of her life. She signed her name “Mary Hier, Queen of England.” She wasn’t terminally ill, but because of a throat problem, she had received food by means of a g-tube for years.

When that tube became dislodged, the health facility asked the court’s permission to reinsert the tube. The judge denied permission saying that implanting the tube would be a “highly intrusive and highly risky procedure.” (22)

Just after Mary Hier’s case was decided, a Boston newspaper ran an article about the health status of a 94-year-old woman. That woman was described as doing well following a minor medical procedure “to correct a nutritional problem.” (23)

The woman’s name was Rose Kennedy. The minor medical procedure was insertion of a g-tube.

For Mary Hier – elderly, demented, poor, and without family – the same surgery was described as “highly invasive and highly risky.” For Rose Kennedy – mother of a president and U.S. senators – it was considered a “minor procedure.”

Fortunately for Mary Hier, last minute intervention resulted in her g-tube being reinserted. She lived comfortably for several years after that – happily signing her name “Mary Hier, Queen of England.”

Tube feeding has been commonly used for more than one hundred years and is used by hundreds of thousands of people. (24) It is not expensive. But it is legally considered a “medical treatment” and it is routinely withheld or withdrawn.

Some who receive nourishment by tube do so because they can’t swallow, but this doesn’t affect their ability to hold down jobs or, for that matter, to take unaccompanied vacations to faraway places.

In most cases, however, those who are tube fed are dependent on others for much or all of their care. In long-term care facilities, people who can chew and swallow if spoon-fed are sometimes placed on tube feeding because it is less time-consuming for caregivers. After months of tube feeding, the ability to swallow can become atrophied. Ironically, this then presents the opportunity or excuse to remove food and water, because it is “medical treatment.”

Is spoon feeding optional?

“Artificial feeding” is not a medical term. It is a catch phrase that is generally thought to mean tube feeding. However, in court cases, expert witnesses have testified that “artificial feeding” can include spoon feeding and that the food brought on a tray to a patient in a convalescent care home can be considered “medical treatment” because the patient’s diet must be approved by a physician. (25)

In a 2006 letter to a Vermont newspaper, Dr. Ethan A. H. Sims suggested that individuals could “avoid inappropriate prolongation of life by spoon feeding” by filling out a Vermont Living Will, indicating [in the space for desires, special provisions and limitations] that they not be fed by spoon if they develop “severe dementia or an incurable illness.” (26)

A novel way in which cessation of food and fluids by mouth may be interpreted was described by Connie Holden, the former nurse-administrator of a Colorado hospice. Speaking at a Michigan conference, Holden explained her involvement with the dehydration deaths of three nonterminally-ill patients:

One such patient was an elderly woman who was so physically healthy that she hadn’t seen a doctor for ages. She had what Holden referred to as “the dwindles” (a term she used for the aging process). The woman had researched ways to end her life and had decided to stop eating and drinking so she would die.

The woman – not dying, not even ill – was admitted to the hospice so she could receive any pain control that might be necessary as she starved and dehydrated to death.

Asked how this woman or other similar patients could be considered “terminally ill” as required for hospice care, Holden stated, “The definition of terminally ill, of course, is six months or less and we knew that all three of these patients would die in six months or less if they stopped eating.” Thus, the patients were deemed to be terminally ill. (27)

Using Holden’s interpretation, a law that permits assisted suicide or euthanasia for persons who are terminally ill could apply to virtually anyone if that person is no longer receiving food or fluids.

Food & Fluids: Treatment or Care?

As discussed above, food and fluids, especially if provided by tube, are considered “medical treatment” from a legal standpoint. Whether one agrees or disagrees with this, it is entrenched in the law.

But, again, not everything that is legal is ethical. So, from an ethical standpoint (as well as from a common sense consideration), is the provision of food and fluids “treatment”? Or is it basic care to which everyone has a right?

“Treatment” is defined as “the application of remedies to relieve or cure a disease or disorder.” (28)

There are four major necessities of life that every person needs. They are warmth, hygiene, food and fluids, and repositioning or movement. Let’s consider each of these:

Warmth

In the middle of a Minnesota winter, when the temperature is 30 degrees below zero,any person who does not have adequate warmth will die.

Does warmth cure a disease or disorder?

No.

It prevents problems – hypothermia and freezing to death.

Without warmth, any person would die.

Warmth is basic care, not treatment.

Hygiene

If any person’s body is not cleaned, if any person is surrounded by bodily wastes, disease and infection will result, leading to death.

Does hygiene cure a disease or disorder?

No.

Hygiene prevents problems – infection and disease.

Without it, any person would die.

Hygiene is basic care, not treatment.

Food & fluids

If any person does not have food or fluids, starvation and dehydration will result.

Do food and fluids cure a disease or disorder?

No.

They prevent a problem – starvation or dehydration.

Without them, any person would die.

Food and fluids are basic care, not treatment.

Repositioning or movement

If any person remains immobile for a great length of time, pressure sores (bed sores) will occur, resulting in infection and death.

Do repositioning or movement cure a disease or disorder?

No.

They prevent a problem – death from pressure sore infections.

Without repositioning or movement, any person would die.

Repositioning or movement is basic care, not treatment.

Whether a healthy Olympic athlete or a frail patient, completely dependent on others for care, each and every person needs warmth, hygiene, food and fluids, and repositioning or movement to prevent – not to cure – disease or illness.

Since food and fluids are ethically basic care, does this mean that they must always be provided to every patient in all circumstances?

No. There are situations where giving food and water, whether by mouth or by tube feeding, would be futile or excessively burdensome. For example, patients who are very close to death may be in such a condition that fluids would cause a great deal of discomfort or may not be assimilated. Food may not be digested as the body begins “shutting down” during the dying process.

There comes a time, when a person is truly imminently dying – within hours or a few days, not within weeks or months – that simply wiping the brow and moistening the lips with ice chips may be all that need be done. No one is saying that food and fluids should be forced on such a person. This would be burdensome and futile.

Additionally, in extremely rare cases, where the very means of providing food and fluids would be excessively burdensome and/or painful for the patient, a decision to withhold feeding in such a situation would be ethical.

However, practically speaking, decisions to deny food and fluids do not center around “burdensome means.” The decisions, instead, focus on people who are considered “burdens.”

The real questions are: “Do we continue to feed people who are disabled, demented, abandoned, or unwanted? Or do we end their lives by the universally effective, deadly measure of stopping food and fluids?”

Removing food and water because the person is considered burdensome or “better off dead” is legally permitted. Ethically, it is a way of killing the person – directly, intentionally, and cruelly.

Not many years ago, discussions about denying food and fluids were shocking. The reverse is now the norm. Healthcare providers are more likely than not to suggest and, in some cases, pressure patients or their decision-makers to authorize withholding or withdrawal of the “medical treatment” of food and fluids.

That is another reason why it is so important that a person be assertive regarding his or her own rights and name an agent in a durable power of attorney for health care (like the PMDD) who can be assertive on the person’s behalf.

CONCLUSION

In the current legal and ethical climate, a certain irony prevails. At the same time that assisted-suicide advocates are promoting their agenda in the name of “personal choice,” many “ethicists” and “experts” are attempting to limit medical treatment or care – even if the patient or patient’s decision-maker requests it.

That is why it is so important to:

Be informed about legal and political developments.

Actively oppose assisted suicide and euthanasia.

Actively support patients’ rights.

Protect yourself by signing a protective durable power of attorney for health care like the ITF’s Protective Medical Decisions Document.

Let others know about the need to sign such a document.

Do not be intimidated by healthcare providers and ethics committees who may pressure you to accept their decisions.

Know your rights if there is a dispute over your medical care or that of a person for whom you are the designated decision-maker.

This is the only way to make certain that a patient’s right to receive treatment and care are not replaced by a doctor’s power to deny care, prescribe a deadly overdose or administer a lethal injection.

Endnotes:

1. All of the answers are “no” or “not always” as this report explains.

2. Tenn. Code Ann. § 68-11-1806 (2005).

3. Burns Ind. Code Ann. § 16-36-1-5 (2006).

4. W. VA Code § 16-30-8 (2006).

5. Conn. Gen. Stat. § 19a-571 (2006).

6. Cal. Prob. Code § 4711 (2006).

7. Fla. Stat. § 765.401 (2006)

8. David Wasson, “Report details events prior to woman’s death at nursing home,”Yakima Herald-Republic, March 4, 1993 and David Wasson, “‘No code’ nightmare,”Yakima Herald-Republic, March 14, 1993.

9. A PMDD packet can be obtained by contacting ITF at 740-282-3810 or 800-958-5678. Although a donation is appreciated for the packet, it is not required.

10. Advance Directives, 42 CFR 489.102 (a) (1) (i) (2006).

11. Advance Directives, 42 CFR 489.102 (a) (2) (2006).

12. Advance Directives, 42 CFR 489.102 (a) (3) (2006).

13. Individual state laws contain wording similar to that of federal regulations.

14. Advance Directives, 42 CFR 489.102 (a) (1) (ii) and (b) (2006). State laws vary on the conditions under which a healthcare provider may refuse to honor a patient’s or a decision-maker’s decision. In all cases, however, the notices mandated by federal law must be provided.

15. For an excellent discussion of “futile care theory,” see: Wesley J. Smith, Forced Exit, (Encounter Books, 2006 edition).

16. Todd Ackerman, “Texas’ patient care law at hub of Houston dispute,” Houston Chronicle, July 8, 2006.

17. Tex. Health & Safety Code § 166.046 (2005).

18. “The night that 38 stood by as a life was lost,” New York Times, March 12, 1984. This was one of many articles written on the 20th anniversary of Kitty Genovese’s death.

19. Daniel Callahan, “On Feeding the Dying,” Hastings Center Report, Oct. 1983, p. 22. (Emphasis added.)

20. Ronald A. Cranford, “Termination of Treatment in the Persistent Vegetative State,”Seminars in Neurology, vol. 4, no. 1, March 1984, p. 41. Cranford served as an expert witness, advocating the withdrawal of food and fluids, in virtually every high profile food and fluids case from the 1980′s until his death on May 31, 2006. Among the cases were those of Nancy Cruzan, Nancy Ellen Jobes, Christine Busalacchi, Michael Martin, Robert Wendland and Terri Schiavo. (Emphasis added.)

21. McMurtry, “Modern Gastrostomy for Stricture of the Esophagus, with Report of a Case,” and Coomes, “Gastrostomy, with Report of a Case,” Transactions of the Kentucky Medical Society (1896).

22. In re Hier, 18 Mass. App. 200, 464 N.E. 2d 959, 964 (1984).

23. “Rose Kennedy ‘doing well’ after surgery,” Boston Globe, July 29, 1984, p. 35.

24. A 1987 government report found that at least 848,100 people per year receive food by means of a tube in hospitals, nursing homes or their own homes. Office of Technology Assessment, U.S. Congress, Life Sustaining Technologies and the Elderly, (1987), p. 294.

25. Cruzan v. Harmon, 760 S.W. 2d 408 (Mo. 1988) (No. CV 384-9P), transcript, pp. 163 and 228; McConnell v. Beverly Enterprises, 209 Conn. 692, 553 A. 2d 596 (1988) (No. 0293888), transcript, p. 56; Testimony of Eric Cassell, M.D. before the Committee on Finance, United States Senate, May 5, 1994, p. 4.

26. Ethan A. H. Sims, M.D., “Letter to the Editor: Another option at end of life,”Burlington Free Press, May 31, 2006.

27. Connie Holden, RN, at the 10th National Hemlock Conference, June 7, 1998, transcripts of Tapes SU1 and SU2. (On file with author.) At the time of the conference, Holden was executive director of Boulder County Hospice and served on the executive committee of the Colorado Hospice Organization.

28. The American Heritage Dictionary, Second College Edition.

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Rita L. Marker is an attorney and executive director of the Patients Rights Council. Updated: 12/06