Blackburn J.A., Dulmus C.N. (Editors). Handbook of gerontology: evidence-based approaches to theory, practice, and policy

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In re Saikewicz, 370 N.E. 2d 417, 430–432.

health care decision. Generally speaking, patients can be divided into four cat-

egories (at the time of the decision to refuse life-prolonging procedures): the

competent patient; the once-competent, currently incompetent patient; the

never-competent patient; and the minimally conscious patient.

The competent patient is conscious and capable of giving informed consent.

Therefore, for these patients, there is no need for a surrogate decision maker and

no need for court intervention. Absent some concern about the patient’s ability to

give informed consent or the legality of the patient’s direction, or, perhaps, the

health care provider’s concern about liability because of an unconventional wish

of the patient, the patient’s decision controls. If the patient chooses to exercise her

“right to die” by having life-prolonging procedures withheld or withdrawn, then

the patient’s choice should be honored.

The most common category of patient is the patient who was once-competent,

but at the time to make the health care decision is no longer competent. Most of

the patients in the right to die decisions fall in this category, including Karen

Ann Quinlan, Nancy Cruzan, and Estelle Browning. For this patient, there must

be some surrogate decision maker and the application of the appropriate surro-

gate decision-making standard (most states apply the substituted judgment doc-

trine). The problem so often with these patients is that so few have made their

wishes known or designated a surrogate. Most commonly, the patient may have

made some statements in the past, but not in conjunction with his or her specific

health condition. Therefore, the patient’s wishes must be discerned as best as

possible, and it may be necessary for a court to determine whether there is suffi-

cient evidence of the patient’s wishes before life-prolonging procedures can be

withdrawn.

The never-competent patient is the patient who, although legally an adult based

on age, in the eyes of the law has never had the ability to make legally binding de-

cisions or to give informed consent. These patients suffer from severe mental retar-

dation (note that some people can suffer from developmental disabilities or mild

mental retardation and still be able to make legally binding decisions and give in-

formed consent) and generally have the IQ of a very small child. For these patients,

it was never possible for them to make advance directives or to state their wishes

regarding life-prolonging procedures. For these patients, it is necessary to have

court involvement to some degree, whether to appoint a guardian for the patient

with the authority to make health care decisions, including end-of-life decisions, or

to order the removal of life-prolonging procedures. For these patients, the court

must look at factors such as health condition, treatment, ability to cooperate with

the treatment, and side effects. An example of the court’s analysis of factors to con-

sider in such cases is contained in the Saikewicz decision.

The whole area of jurisprudence in the right to die is driven by the advances in

medical technology. So too is the fourth category of patient, the patient who is

minimally conscious. These patients have some awareness and interaction with

their environment and may be able to engage in rudimentary communication,

such as answering yes or no questions with repeated prompting using assistive

communication devices, eye blinks, and so on (Giacino et al., 2002). The challenge

in these cases is the reliability of the communication. There is no real way to

Health Decisions and Directives about the End of Life 527

Conservatorship of Wendland, 26 Cal. 4th 519, 529–530 (2001).

Id. at 524–526.

See, for example, Florida Statutes, 744.3115.

know whether the patient understands the question and whether the answer is

truly a reflection of the patient’s conscious decision. One of the more graphic ex-

amples of the issues faced in cases of patients who are minimally conscious is the

case of Robert Wendland,

who was not comatose or terminally ill, nor was he in

a persistent vegetative state.

Think about how the category of patient affects the patient’s right to refuse

life-prolonging procedures. One tool that patients can use, but often don’t, is the

advance directive.

DVANCE

IRECTIVES

Decisions about various health care issues at the end of life should be ad-

dressed in advance to avoid ambiguity or legal challenges. We review next some

of the most common decision categories, generally referred to as “advance

directives.”

Advance directives are expressions by individuals, made while they are legally

competent, about how they want certain health and medical procedures to be

done for or about them in the event of disability or incompetence. Disability and

incompetence can come in two forms: physical and mental. For example, follow-

ing an accident, injury, or illness, a person may not be able to independently pro-

vide for many of his own daily living needs, such as preparing meals, driving,

bathing, or caring for his own health care needs. Or patients may lose the capac-

ity to speak and easily convey their wishes. In the event somebody becomes phys-

ically disabled or incapacitated, on a temporary or permanent basis, what

guidelines should be used to provide care and services for him? What scope of

care and services would that individual want?

The matter is more challenging when there is a mental disability or incapacity.

Persons born with these incapacities have provisions made for them in the law,

wherein guardians are appointed to make decisions on their behalf.

But what

happens if, as a consequence of an illness or injury, a person loses substantial

mental capacities and is no longer able to make decisions or convey information

about his intentions?

Once a person has become incompetent, he is no longer legally capable of mak-

ing certain decisions, and his intentions may not be carried out unless he has

stated them in advance, according to the guidelines of specific state laws. As we

noted earlier, living wills and health care surrogates took root during the 1970s.

Generally, these advance statements are written documents, which may have

to be witnessed and notarized, and in some states, a particular form may have to

be used or followed if the document is to conform to the law. But this is not uni-

versal. Some states accept as evidence verbal expressions of intention—but prov-

ing these up can be difficult and certainly costly if there is a challenge.

For example, assume that a wife claims that she had been told by her husband

that he did not want any form of life-prolonging care in the form of a respirator,

nutrition/hydration tube, heroic measures to resuscitate, or even antibiotic

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Bouvia v. Superior Court, 195 Cal. App. 3d 1075 (1987).

Satz v. Perlmutter, 379 So.2d 359 (Fla. 1980).

Wendland, op. cit.; Guardianship of Schiavo, 916 So.2d 814 (Fla. 2d D.C.A. 2005).

42 U.S.C. SS 1395cc, 395mm, 1396a.

therapy. But their child disagrees with his mother’s statement of intent and be-

lieves instead that his father should be allowed to receive heroic, life-sustaining in-

terventions at all costs. Families face disagreements every day around these

issues. Most of these are worked out through the auspices of a social worker, hos-

pice counselor, or therapist. But guilt, bad family relations, honest differences of

opinion, and other factors can and do get in the way of a seamless end-of-life pro-

cess. The consequences can be devastating, not only for family members who may

literally feud, but for the incapacitated person who may be subject to prolonged

periods during which his or her wishes are not being fulfilled. And we are not re-

ferring here to the physician-assisted suicide cases involving Dr. Kevorkian but to

cases like Elizabeth Bouvia

or Satz v. Perlmutter,

where competent patients had

to get court orders to have their wishes honored; and cases like Quinlan and

Cruzan, the once-competent, currently incompetent patients, where the decision to

remove life-prolonging procedures was contested; and more recently, the cases of

Wendland and Schiavo, where the dispute was among the family members. (Mr.

Wendland was clearly minimally conscious. There was a dispute between the par-

ties about Mrs. Schiavo’s condition. Her husband/guardian took the position that

she was once-competent, currently incompetent, but her parents argued that she

was minimally conscious, or more accurately, severely disabled.)

By executing an advance directive, ambiguity can be reduced and conflicts be-

tween family members mitigated, although having an advance directive doesn’t

guarantee that there will be no dispute. Furthermore, physicians and hospitals

greatly prefer to have advance directives in place because it reduces for them the

challenges of having to negotiate with patients or family members about what the

expectations and intentions are. Because the law requires that hospitals offer pa-

tients information about advance directives at the time of admission, patients

cannot claim a lack of knowledge.

Advance directives also may specify a person’s wishes about participating in

experimental research regimens for his or her disease, or they may provide for

the donation of all or part of the person’s body for use by others, for scientific re-

search or for public display. For example, since 2000, a new technique called plas-

tization has made it possible for people to have their body preserved using a

polymer injection process and to be displayed for public or research uses.

Any advance directive can be easily modified or destroyed if a person changes

her mind. In fact, many attorneys recommend revisiting advance directive docu-

ments and preferences every couple of years, just as one might revisit one’s will or

trust documents. It is also recommended that these documents be shared openly

with family members, physicians, and one’s attorney so that everybody knows

where they are and what they say.

Advance directive are generally classified into the following categories of ac-

tion or documents:

• Health care surrogates or durable powers of attorney for health care

•Living wills

Health Decisions and Directives about the End of Life 529

• “Do not resuscitate” (DNR) orders

• Organ and tissue donations

The advance directive process can include express reference to how a person

wishes to have her body treated once she dies. This relates to intentions regarding

burial, cremation, and donation.

Health Care Surrogate or Durable Power of Attorney for Health Care Although living

wills may be the most familiar term associated with advance directives, they are

not necessarily the most important or even the most useful. Rather, the designa-

tion of another person who is legally authorized to make medical and health care

decisions can be far more valuable. These documents are called health care surro-

gates or durable powers of attorney for health care.

Each state has provisions that allow individuals to expressly name another

person to make decisions about their health care. The scope of the designation can

be very limited or very broad. It can refer to limited periods of incapacity, for ex-

ample, during surgery or anesthesia, when a person is not able to make decisions

for herself; or it can refer to periods following an accident or serious illness that

might occur in the future, during which a person is similarly incapacitated. It can

be a broad-based granting of authority in the event of general incapacity, either

physical or mental (i.e., dementia). It can refer to specific types of medical deci-

sions (such as surgery, administration of certain medications, experimental pro-

cedures), or it can reference authority to make decisions to withhold heroic

measures or technological means of maintaining life.

It is prudent for a person to make a primary and a secondary designation for

surrogacy. The primary designee will have the responsibility for making the spec-

ified decisions, but in the event that the primary is unable or unwilling to serve,

the secondary surrogate assumes the responsibility. Selecting the persons to

serve in these capacities is an important and serious decision. Some people feel

that they are obliged to name their eldest child or their spouse, even though they

will confide that they are not convinced that person would always make decisions

in their best interests.

Some people also wish to select more than one primary surrogate, forming a

team of decision makers. This has certain advantages when there may be a need

for caring loved ones to discuss the realistic options and come to a consensus for

the benefit of all. Multiple surrogates can also be valuable if more than one per-

son is named and either individual is empowered to make decisions. This has par-

ticular value when surrogates do not live near the patient, or when one is not

easily accessible during a time when a decision must be made.

But naming multiple surrogates can be an invitation to confusion and complex-

ity, especially if it is done for the purpose of avoiding bad feelings among family

members.

It is recommended that multiple, original, signed surrogacy documents be cre-

ated and that copies be provided to the patient’s primary care physician, attor-

ney, and those who will be named as surrogates. Often, documents are executed

and then placed in a safe deposit box or in an obscure drawer where nobody even

knows they exist. Once a person is incapacitated according to the terms of

the surrogacy and the state law, the document should be shared with physicians,

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hospital personnel, and others so that there are no mistakes about the intentions

of the person. Many hospitals now encourage patients to formally file their surro-

gacy documents upon admission, even for simple procedures.

The surrogacy is considered by many to be the most important of the advance

directives because it formally, legally, and expressly places a person’s health de-

cisions under the responsibility of a specific person. It helps up front to elimi-

nate ambiguity and questions about who should make what kinds of decisions

in the event of an incapacitating event. Figure 19.1 is an example of a surrogacy

document.

Living Wills Living Wills are probably the best-known form of advance direc-

tive, but they are not always the most useful or effective. Living wills are general

statements about how an individual wants to be treated in the event that a life-

threatening or terminal condition afflicts him. Living wills should generally be

used after a surrogacy document, and in the event that there arises a question

about what the person’s wishes really were about certain end-of-life issues.

Most states provide that individuals may choose to withhold or remove certain

medical care in the event of a terminal condition. “Terminal” refers to conditions

for which no reasonable medical recovery is likely, and include persistent vegeta-

tive state, dementia, and other conditions. Each state law should be consulted for

the specific conditions that apply. Often patients do not realize that their living will is

not effective unless those conditions are met.

Living wills allow individuals to state that they want to be kept alive at

all costs, regardless of their medical condition and regardless of the reasonable

likelihood of recovery. More commonly, however, the living will reflects a deci-

sion by an individual not to be kept alive in the event of certain conditions or

circumstances.

Figure 19.2 on page 533 is a sample living will document that provides a set of

options for the person executing the document. It is important to appreciate that

the living will should, to the extent possible, mirror the expected decisions that

the health care surrogate will be making on behalf of the incapacitated person.

Appointing a surrogate who will not uphold the intentions expressed in the liv-

ing will is an invitation for disaster and legal expense. The surrogate should be

fully familiar with the expectations in the living will and should be comfortable

carrying them out. If not, the wrong surrogate may have been chosen.

Physicians, nurses, and health care organizations are in the business of keep-

ing people alive and healthy as long as possible. Although physicians have not

tended to view themselves as agents participating in decisions to end life, tacit

understandings often existed between family members and physicians regarding

end-of-life decisions. They were just not announced or memorialized in writing.

When patients were very sick and in a terminal state, physicians would often let

them, if not help them, transition into a peaceful death.

Again, specificity is important to avoid ambiguity and controversy. The partic-

ular form of the living will document is also important. In most jurisdictions, it

must be signed, witnessed, and notarized. In some jurisdictions, it must follow a

particular format and reference state law. Not all jurisdictions will honor the liv-

ing will of another state. Persons who travel frequently or who have residences in

more than one state should determine how each state requires living will docu-

ments to be created.

531

STATE OF

FLORIDA

COUNTY OF HILLSBOROUGH

DESIGNATION OF HEALTH CARE SURROGATE

FOR

(Printed Name)

In the event that I have been determined to be incapacitated to provide informed

consent for medical treatment and diagnostic procedures, I wish to designate as my

surrogate for health care decisions, the following person, to act on my behalf:

Name:

Address:

In the event the above person,

, is unable or unwilling to serve as my

health care surrogate, I wish to designate the following person to act on my behalf:

Name:

Address:

I fully understand that this designation will permit my designee to make health care

decisions and to provide, withhold, or withdraw consent on my behalf; to apply for public

benefits to defray the cost of health care; and to authorize my admission to or transfer

from a health care facility.

I further affirm that this designation is not being made as a condition of treatment or

admission to a health care facility. I will notify and send a copy of this document to the

following persons other than my surrogate, so they may know who my surrogate is.

Name

Signed Date

Witnesses: Name

Signature

Address

Name

Signature

Address

(continued)

Figure 19.1 Health Care Surrogate Template. Adapted from Florida Bar Templates,

http://www.floridabar.org/tfb/flabarwe.nsf/840090c16eedaf0085256b61000928dc

/b954f12053a410ec85256e28005bd4a0?OpenDocument.

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STATE OF FLORIDA

COUNTY OF HILLSBOROUGH

The foregoing instrument was acknowledged before me this

day

200 , by who is personally known to me or

who has produced Florida State or

State Driver’s License,

Number

as identification and who did take an oath, and that the

affiant’s signature was witnessed by

who is personally known to me or

who has produced a Florida State or

State Driver’s License, Number

as identification and who did take an oath and by who

is personally known to me or who has produced a Florida State or

State

Driver’s License, Number as identification and who did take an oath.

Executed this

day of 200_.

Seal

My commission expires:

Figure 19.1

(Continued)

See for example, The Living Will Registry line at http://www.uslivingwillregistry.com.

www.agingwithdignity.org.

No legal document regarding a person’s life or health should be signed without

carefully considering the implications of that document and without consulting

family and loved ones. Executing a health care surrogate or a living will without

telling anybody about them is likely to create controversy and chaos. There are a

variety of commercial and not-for-profit options that are available for people to

use as repositories for their surrogate and living will documents. While a per-

sonal attorney, trust banker or friend/relative can serve as the holder of the docu-

ment, some may prefer another third party.

The Living Will Registry is a private company that seeks to provide national

virtual storage and access services for persons who wish to file their living will

documents in a central repository. But somebody still needs to know that you

have located your document with their service.

Some jurisdictions will accept video statements of intent regarding health care

surrogates and living wills. Some jurisdictions will accept verbal, unwritten evi-

dence of a person’s intent, usually subject to a hearing and the presentation of ev-

idence. But to avoid confusion and ambiguity, written, signed, witnessed, and

notarized documents are the only reasonable assurance that a person’s intentions

will be carried out.

The Robert Wood Johnson Foundation has funded the development and distri-

bution of a the Five Wishes program, which is administered by Aging with Dig-

nity, a Florida organization. Five Wishes is a document that offers a stepwise

approach to helping people and their families ask and answer questions about

end-of-life decisions.

The categories of issues addressed in the Five Wishes doc-

ument include who will make decisions, the kind of care and treatment to be pro-

vided, the level of comfort or relative pain a person agrees to experience, and

533

LIVING WILL DECLARATION

(Printed Name)

voluntarily make this declaration on 200_ . I recognize that death

is natural and is but a phase of the cycle of life. I do not fear death as much as I fear the

indignity and futility of deterioration, dependence and hopeless pain. If there is no

reasonable medical expectation of my recovery from a physical or mental disability, I do

not wish to be kept alive by artificial means or heroic measures.

Therefore, if my attending or treating physician and another consulting physician

determine that there is no reasonable medical probability of my recovery from any of the

following conditions, I direct that life-prolonging procedures be withheld or withdrawn

when the application of those procedures would serve only to prolong artificially the

process of dying, and that I be permitted to die naturally with only the administration of

medication or the performance of any medical procedure deemed necessary to provide

me with comfort care or to alleviate pain, even if it hastens my death:

• I have a terminal condition caused by injury, disease or illness from which there is

no reasonable medical probability of recovery and which can be expected to cause

my death if not treated;

• I am in an irreversible end-stage condition that is caused by injury, disease or

illness that has resulted in severe and permanent deterioration, indicated by my

incapacity and complete physical dependency, for which treatment would be

medically ineffective to a reasonable degree of medical certainty;

• I am in a persistent or permanent vegetative state characterized by permanent and

irreversible unconsciousness and/or brain injury in which there is an absence of

voluntary action or cognitive behavior of any kind by me, with an inability to

communicate or interact purposefully with others in the environment around me.

In any of the situations described above, I direct that the following medical interventions

that I have initialed be considered life prolonging procedures which I hereby direct not

be administered to me:

Placement on ventilator or other mechanical devices

Surgical procedures and blood transfusions, except as needed to prevent or

alleviate suffering

Placement in an intensive care unit except as an absolute necessity to

relieve suffering

Chemotherapy or radiation therapy, unless there is a substantial medical

probability my condition will materially improve

Resuscitation efforts in the event of arrest of my heart or breathing

Active treatment of a new reversible condition, such as a newly discovered

cancer, heart condition or pneumonia

Artificial nutrition and hydration (providing food and water through tubes)

I intend that this declaration be honored by my family and my physicians and health care

institutions as the final expression of my legal right to refuse medical or surgical

treatment or care and to accept the consequences for such refusal. I understand that my

wishes may place a heavy burden upon others, and so I make this declaration to

assume sole responsibility for my decision and to mitigate any feelings of guilt that my

wishes may cause.

(continued)

Figure 19.2 Living Will Template.

I am emotionally and mentally competent to make this declaration, and I understand its

importance.

200

This declaration is witnessed by us in the presence of the declarant:

Witness Witness

Address Address

Telephone Telephone

State of Florida /

County of Hillsborough /

The foregoing instrument was acknowledged before me this

day

200 by , who is personally known to me, and was witnessed

, who is personally known to me or produced a valid Florida Driver’s

License, and by

, who is personally known to me or produced a valid

Florida Driver’s License, after all of them did take an oath.

Notary Public

State of Florida

Figure 19.2 (

Continued)

what and when people should be told about them when they are going to die.

The 11-page document can be acquired through www.agingwithdignity.org.

THICS

ONSULTS

Both the Quinlan and Browning courts developed frameworks for deciding end-of-

life cases outside of court intervention. Many times, a hospital ethics committee

is involved in the review of the case and the proposed course of action. A hospital

ethics committee is usually an interdisciplinary committee that looks at the case

from a number of different perspectives, including, as the name implies, an ethi-

cal perspective.

This consultative body can provide guidance, make sure all the

right questions have been asked, and affirm the appropriateness of a particular

course of action. Ethics committees are generally composed of physicians, nurses,

nonclinical persons, and often a clergy member, and at least one member of the

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Id.

See an example of an ethics committee handbook, the University of Kansas Medical Center, at

http://www.kumc.edu/hospital/ethics/ethics.htm.

See, for example, Florida Administrative Code 64E-2.031 and Florida Statutes, 401.45(3)(a).

See, for example, Will Doctors and Hospitals Recognize My Advanced Directive? http://www.abanet

.org/publiced/practical/directive_recognition.html.

Health Decisions and Directives about the End of Life 535

committee is trained in medical ethical decision-making issues and processes.

The purpose of the ethics committee is to place a variety of complicated clinical

decisions about care, treatment, death, and dying within a well-balanced, orderly

process. The entire palliative care movement to assure a comfortable, humane,

and desirable (by the patient) end of life has been one of the vital forces behind

the creation and operation of hospital ethics committees (Fins, 2005).

Do Not Resuscitate Orders Do not resuscitate (DNR) orders are formal medical or-

ders issued by a physician that carry instructions about resuscitating the patient.

There are two types of DNR orders: the in-hospital DNR order, which is entered

in the patient’s chart, and the out-of-hospital DNR order. Generally, the latter re-

lates to resuscitation in the event of an accident or a heart attack, stroke, or other

sudden threat to life that occurs outside of the hospital. Physicians will issue a

DNR order upon the request of a patient and after counseling if the patient suf-

fers from chronic, terminal, and life-threatening conditions and the patient does

not wish to prolong her life in a possible coma or vegetative state or in profound

disability. Such orders are agreed to between the physician and the patient and

signed by the physician.

The order is formally recorded in the patient’s medical

record. It should also be posted in an obvious place in the patient’s home, such as

on the refrigerator, and it can also be worn on a medical alert bracelet or necklace

to alert emergency medical personnel.

The DNR order is a serious and important document that, unlike other advance

directives, requires a physician’s formal prescription. Enforcing the DNR order can

sometimes be tricky, because the nature and severity of a potential life-threatening

event can be a subjective matter. During an emergency, for example, well-meaning

and well trained clinicians or others may automatically seek to provide CPR or

some other life-saving function because they are not aware of the DNR order, be-

cause they don’t believe that the event is sufficiently serious to cause potential

long-term adverse effects, or sometimes because they do not support the idea of a

DNR order. Some states have statutes or regulations that specifically address the

out-of-hospital DNR order. Some require that the order be on a specific color of

paper and have specific language and other requirements. In those states, a DNR

direction contained in a patient’s advance directive is not effective.

When an advance directive or the patient’s wishes are not honored because a

caregiver or health care provider refuses to honor the directive or disagrees

with the patient’s wishes, this can create a set of clinical, legal, and ethical

dilemmas. Directives may not be honored for a number of reasons: there may be

no knowledge of the directive’s existence; a traveling patient may have left the

directive at home; or the health care provider disagrees with the patient’s direc-

tions.

Advance directive statutes generally contain conscientious objector

clauses, which allow the health care provider to transfer the patient to another

health care provider if the original provider disagrees with the patient’s deci-

sion to refuse life-prolonging procedures on conscientious grounds (such as

religious or moral beliefs). Beyond those clauses, a caregiver or health care