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

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82 N.Y. 2d 10 (1993).

77 Ohio St. 3d 82 (1996).

provider who unilaterally decides to not honor the patient’s wishes violates the

patient’s rights as well as the doctrine of informed consent. Problematically,

however, it may be hard to know when an advance directive is being ignored, be-

cause most patients in this situation are not conscious and competent. And

assuming discovery, what is the appropriate remedy? Removal of the life-

prolonging procedures as expeditiously as possible? Absolutely. But what about

the medical bills that have been incurred by the continuation of the life-prolong-

ing procedures against the patient’s wishes? Is it fraud if the patient’s insurance

is billed for this unwanted treatment? Can the patient’s representative recover

money damages for the disregard of the patient’s wishes? These are difficult

questions that are offshoots of the bigger issue of honoring the patient’s wishes.

In addition to the problem of discovering cases where the patient’s wishes are

not being honored is determining with necessary certainty that the patient truly

wished the procedures withdrawn, the provider or caregiver knew it and inten-

tionally decided to ignore it, and putting a dollar value on extra days of life. The

advance directive statutes may contain penalties for those who willfully ignore

a patient’s directive, but discovery and proof continue to be a problem. For

examples of these types of issues, see Grace Plaza v. Elbaum

and Anderson v.

St. George Hospital.

The American Bar Association is an especially helpful source of information

about state-by-state legal options and requirements regarding health care surro-

gates, living wills, and other advance directive issues. Their website (http://www

.americanbarassociation.org/rppt/public/living-wills.html#whyhavehd’s) is an

excellent portal to background and technical information.

Organ and Body Part Donations Medical technology has successfully evolved to

the point where there is a high demand for the recycling of body parts. Kidneys,

hearts, lungs, corneas, body tissues, and bones are all now potentially reusable

through transplantation. Throughout the United States organ procurement or-

ganizations (OPOs) have blossomed by acting as the intermediary by which per-

sons in need of a new heart, lung, or kidney, can find and receive one from

somebody who has died. The OPOs nationally coordinate their efforts through a

series of organ data bank systems and local and regional priority lists for the re-

ceipt of specific organs.

This topic is of relevance here because the decision to donate body parts is an

advance directive, or can become a family decision made while a patient is about

to die. Decisions to donate can be made well in advance of death, but to make use

of an organ it needs to be removed very soon after death. So timing is a very im-

portant issue for those seeking organs.

A decision to donate body parts can be made in several ways. Most states now

have provisions that allow persons to designate their intention to be an organ

donor through the driver license system of the state. The prospective donor’s li-

cense is stamped with a code that provides notice to health care workers and others

that the person has agreed to be an organ donor. Most states have computerized

Health Decisions and Directives about the End of Life 537

systems that can be accessed by OPOs and health care institutions to verify the

donor’s intentions. This means that in the event of an accident, injury, or serious

illness, if a person is brought to a hospital there is advance notice to the hospital

that the person may become an organ donor.

Other opportunities for advance statements of intent regarding organ donation

include reference within the living will and even the general last will and testa-

ment. For specialized cases, such as cornea donations, the Lions’ Eye Banks can

be contacted in advance and permission given to extract that body part.

But the OPOs and persons seeking organs for transplantation do not rely solely

on advance directives and driver license programs. Representatives from OPOs

often have offices at major hospitals and may be alerted to cases of patients who are

terminal and about to die. This is the delicate part: The OPO representative may

then approaches the patient (if conscious and competent) or the family and seeks to

get permission to obtain organ donations as soon as possible after death occurs.

Nationally, the organ acquisition process is managed by the United Network for

Organ Sharing (UNOS). This organization was created in 1984 by Congress and is

charged with administering the Organ Procurement and Transplantation Network.

The UNOS describes its activities as including collecting and managing data about

each transplant (harvesting and use) that occurs in the United States; facilitation of

organ matching and placement; and linking medical professionals, recipients, and

donor families for the purpose of maintaining an organ transplantation policy.

More information is available at www.unos.org. The UNOS coordinates and moni-

tors the activities of the individual organ procurement organizations throughout

the nation.

Burial Cremation Options Even if organs are being donated or if a person is con-

tributing her body to a medical school, a decision usually has to be made about

how the body will be finally treated. This usually means one of two options

(other than permanent plasticized display): burial or cremation.

As with other decisions about the end of life, it is prudent to express inten-

tions in advance about how the body will be finally treated. Within the two major

categories of burial and cremation, there are myriad options. Some can be elabo-

rate and expensive, such as custom burial crypts and specially designed coffins.

But we are concerned here with the advance planning and options that should be

considered.

When it comes to burial and cremation decisions, there is a nexus of state laws

and religious customs that come into play. Some religions require burial of the

body within 24 hours; some prohibit embalming. Some states require internment

within a certain number of days of death (unless the body is maintained in a re-

frigerated facility). Many people die in a geographic location far from where they

wish to be buried or cremated, and arrangements must be made to ship the body

or the cremains.

There are burial and cremation societies nationally and locally, and most fu-

neral homes will write advance contracts for the management of the deceased

(body pickup, funeral, grave site or column burial location preidentified). Most

churches, synagogues, mosques, and temples also have arrangements for taking

care of the business aspects of burial or cremation in advance. Advance planning

for the cremation or burial is important to avoid confusion, miscommunication,

and even feuds among family and friends.

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Cruzan, op. cit.; Schiavo, op. cit.; Roe v. Wade, op. cit.

THE QUANTITY VERSUS QUALITY DEBATE

How long and under what circumstances should somebody be kept alive? Ad-

vances in medical technology and pharmaceuticals have made it possible to sus-

tain life and life functions. At one level, this would seem to be exactly what

medical science should strive to accomplish. But there are competing issues re-

lated to the maintenance of life and life functions: quality of life versus quantity

of life as against cost of maintenance, and the rights of persons to make decisions

or be involved in the making of decisions about end-of-life options.

In a nutshell, these competing issues are grounded in value systems and per-

sonal and religious beliefs regarding the value of the individual, the extent to

which autonomy and personal decisions should play a role in life and death mat-

ters, and how much society is willing to pay for health and social services.

The cases of Nancy Cruzan and Terri Schiavo, as well as Roe v. Wade,

brought

these value-based matters directly into the courtroom as well as the living rooms of

America. The case of Theresa Schiavo captured many of the social, economic, philo-

sophical, and clinical issues that define the challenges in death and dying decisions.

It was as much about the tragedy of a single family, where the parents battled with

their son-in-law for control over the fate of a severely brain-damaged woman, as it

was about our national value compass as it emerges in the twenty-first century.

The Schiavo case catapulted a single, unconscious person into international

limelight in a health care system that many analysts believe is fundamentally bro-

ken. The system itself has insufficient resources to provide adequate care and ser-

vices to those in need, and it is not geared toward prevention. The more than

$100,000 each year that was spent to maintain Ms. Schiavo in her hospice, it has

been argued, could have been deployed to provide food, medications, and access

to care for younger, healthy people or for seniors in need of additional social and

medical care.

There are growing numbers of communities across the United States without

neurosurgeons or obstetricians, and the cost of medical malpractice insurance

has pushed many physicians out of practice. Medicare and Medicaid, federal pro-

grams that pay for the aged and the poor, are facing very real shortfalls in rev-

enues and have devised means by which care can be more aggressively rationed

through managed care and benefit reduction policies.

As people live longer and are certain to require more care as they age, how will

decisions be made in our communities to provide one person or group with life-

maintenance services costing $100,000 per year, versus the myriad other needs

that present themselves?

This is the heart of the value question relative to life and death decisions. As

resources become increasingly scarce, how will decisions be made to provide peo-

ple with specific care and services? And what are the trade-offs that communities

will face? An individual’s choice to be kept alive at all costs or to be allowed to

pass without any intervention has social and economic consequences—especially

if society is helping to pay for the care.

Yet do we not, each of us, have an absolute right to enjoy our life completely

and fully as long as we are capable of being kept alive? How do we balance our

personal intentions against broader social value and good?

Health Decisions and Directives about the End of Life 539

www.assistedsuicide.org/suicide_laws.html.

126 S.Ct. 904 (2006).

Oregon Department of Human Services, Eighth Annual Report on Oregon’s Death with Dignity Act,

March 9, 2006, p. 5, http://www.Oregon.gov/DHS/ph/pas/docs/year8.pdf.

As medical science and technology provide means by which to maintain or ex-

tend life, many ethicists and clinicians ask how far it is reasonable to extend life,

especially in cases where active, conscious interaction may be limited or nonexis-

tent. But there is a substantive difference between choosing not to extend a life

and assisting in its termination.

It is precisely the assistance in life termination that has become a major in-

ternational policy issue. European nations have begun to sanction physician-

assisted suicide,

and in the United States, the State of Oregon passed the

Oregon Death with Dignity Act, permitting physicians to prescribe lethal

doses of drugs to persons who have been diagnosed as terminally ill with no

reasonable hope of recovery and who are in the last months of their life. This

law was challenged in federal court by the attorney general of the United

States (Gonzales v. Oregon), and Oregon won.

The federal government sought

to regulate the use of controlled substances by physicians for purposes of as-

sisting in death. The characteristics of persons taking advantage of the law ap-

pear to reflect the intentions of the people of Oregon in creating the law by

referendum. Since the law was enacted in 1997 and physicians were permitted

to prescribe lethal doses of medications, the State of Oregon has carefully

tracked the data on persons electing to participate in physician-assisted sui-

cide. Data published in 2006 are generally reflective of the state’s experience:

Compared to all Oregon decedents in 2005, PAS [physician-assisted suicide] partic-

ipants were more likely to have malignant neoplasms (84% versus 24%), to be

younger (median age 70 versus 78 years), and to have more formal education (37%

versus 15% had at least a baccalaureate degree). During the past 8 years, the 246 pa-

tients who took lethal medications differed in several ways from the 74,967 Orego-

nians dying from the same underlying diseases. Rates of participation in PAS

decreased with age, although over 65% of PAS users were age 65 or older. Rates of

participation were higher among those who were divorced or never married, those

with more years of formal education, and those with amyotrophic lateral sclerosis,

HIV/AIDS, or malignant neoplasms. . . .

Physicians indicated that patient requests for lethal medications stemmed from

multiple concerns, with eight in 10 patients having at least three concerns. The

most frequently mentioned end-of-life concerns during 2005 were: a decreasing

ability to participate in activities that made life enjoyable, loss of dignity, and loss

of autonomy.

THE FUTURE

ESSONS

EARNED FROM

CHIAVO

If history serves as a guide, the lessons associated with the Schiavo case should

provide a beacon of information to direct end-of-life decisions. Ms. Schiavo was a

27-year-old woman who had been married for 6 years before collapsing in her St.

Petersburg, Florida, apartment in spring 1990. Following heroic efforts to bring

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Wolfson, J. In Re, The Matter of Theresa Marie Schiavo, A Report to Governor Jeb Bush and the 6th

Florida Judicial Circuit, Pursuant to the requirements of H.B. 35-E (Chapter 2003-418, Laws of

Florida) and the Order of the Hon. David Demers, Chief Judge, Florida 6th Judicial Circuit regard-

ing the appointment and duties of a Guardian Ad Litem in the matter of Theresa Marie Schiavo, In-

capacitated, December 2003.

Id.

http://english.people.com.cn/200401/10/eng20040110_132296.shtml.

her back and keep her alive, her parents and her husband spent years battling in

court over who should have the authority to make decisions about her health care

services, and in particular, the decision to discontinue artificial life support in

order to allow her to die.

Ms. Schiavo, like most Americans, did not have a written health care surrogate

or living will document. Florida and federal law were tested to the extreme as

every branch of state and federal government became very actively involved in

what became the most litigated end-of-life case in U.S. legal history. In the end,

Ms. Schiavo’s husband, Michael, was permitted to withdraw her feeding tube,

and she died. But not before the governor of Florida, the Florida legislature, the

president and Congress of the United States, the Supreme Courts of Florida and

the United States, and Pope John Paul II had weighed in on the case.

In the pro-

cess, hundreds of thousands of dollars were spent on legal fees, and America and

the world discussed death with dignity, freedom of choice, and the role of govern-

ment in personal decisions.

Theresa Schiavo’s end of life raised the importance of health care surrogates

and living wills to a new high. Ms. Schiavo did not have any advance directives—

something most young people would not generally think of creating. But her case

caused hundreds of thousands of people of all ages to realize that advance direc-

tives are essential parts of any adult’s legal portfolio. Estate planning attorneys

advise families to discuss advance directives with all of their adult members and

to encourage all to express their intentions in writing. As we noted earlier, these

can always be modified. But if they do not exist, any family can find itself in the

kind of expensive, heart-wrenching dilemma faced by the Schiavo and Schindler

families.

EDICAL

CIENCE AND

ELATED

PTIONS

With or without organ donation, individuals have the option of determining that

they want their body to be made available for scientific use. This can take several

forms. Medical schools always need cadavers for their anatomy labs; this is one

important way that young medical students learn about the body. Most public

and private medical schools have formal donation programs.

Since 2000, a new process has made it possible for bodies to be literally plasti-

cized

for the purpose of medical education and for museum display. Yes, mu-

seum display. What has become a popular, though highly controversial technique

allows bodies to undergo an expensive treatment that includes complex, artistic

autopsy. The bodies can then be used in medical training or they can be placed in

public museum display programs.

Health Decisions and Directives about the End of Life 541

CONCLUSION

A combination of medical technology, economics, political, and social forces af-

fect individual and family health-related decisions and directives about the end

of life. In the United States at the beginning of the twenty-first century, there are

profound differences of opinion about how, when, and by whose hand decisions

to terminate life should be made. This applies to cases of infants born with dis-

abling conditions; persons with terminal illnesses, regardless of their age; and

aged persons at the “end” of their “natural” life period. While dying is a part of

the life cycle, many people feel uncomfortable speaking about it, let alone plan-

ning for it. Failure to plan often results in expense, frustration and emotional

pain for those left behind. End-of-life decisions can, and should, be integrated

into the panoply of life management decisions, such as asset management and es-

tate planning. Resource allocation imperatives in health care alone will likely

drive public policy around end-of-life interventions, especially where public

monies are involved. The costs of providing care and maintaining terminally ill

people will be balanced against the costs of preventive and other services for the

general population. Individual prerogatives about how one will be treated and

cared for when ill or disabled and how and where they would prefer to die can

only be honored if these intentions are expressly gleaned and made clear, unam-

biguous, and in conformance with the law.

REFERENCES

American Bar Association. (n.d.). Will doctors and hospitals recognize my advanced directive?

Available from http://www.abanet.org/publiced/practical/directive_recognition.html.

Black’s Law Dictionary (8th ed.). (2004). Rochester, NY: Thomson West.

Fins, J. J. (2005). A palliative ethic of care. Boston: Jones and Bartlett.

The Florida Bar. (n.d.). Available from http://www.floridabar.org/tfb/flabarwe

.nsf/840090c16eedaf0085256b61000928dc/b954f12053a410ec85256e28005bd4a0

?OpenDocument.

Giacino, J. T., Ashwal, S., Childs, N., Cranford, R., Jennett, B., Katz, D. I., et al. (2002). The

minimally conscious state: Definition and diagnostic criteria. Neurology, 58, 349–353.

PART V

CONCLUSION

CHAPTER 20

Global Challenges for an

Aging Population

JEANETTE C. TAKAMURA

HE SIGNIFICANCE OF

population aging as an emerging global phenomenon

captured the attention of many policy makers, demographers, economists,

and other social scientists during the second half of the twentieth century.

Organizations such as the United Nations Economic Commission for Europe were

among the first to examine the long-term effects of the rapidity of aging within its

member nations. Interest increased as the multisectoral implications of a “graying

world” became more evident. In particular, the Organization for Economic Coop-

eration and Development (OECD) and others took note of the demographic revolu-

tion’s impact on national security, national budgets, economic rates of growth and

competitiveness, and systems of social provision, health, and long-term care. For

example, economists from the defense community were concerned—long before

9/11 and the Iraq War—about competition for scarce resources by aged popula-

tions on one hand and aged defense infrastructures on the other (Gouré, 2000;

Peterson, 1999).

Today, most of the global community of 271 developing and developed nations

remain significantly more knowledgeable about (and interested in) issues associ-

ated with children than they are about population aging as an unfolding and com-

plex twenty-first century reality (United Nations, 2002a). Some of this is likely

due to the persistent ageism that gerontologists have been battling for decades. It

is probably also due to the constraints that nations anticipate because of projec-

tions about the enduring nature of the longevity revolution. Compared, for exam-

ple, to threats to infant mortality that persist in various parts of the world,

aging-related issues are relatively new phenomena. Thus, although the Internet

and other modes of communication have disseminated information to far-flung

people and communities, we have not yet reached a universal tipping point con-

cerning global aging.

A much longer work than this chapter would be required to do justice to the

differential rates of aging and country-to-country variations, including social,

545