An Economic Exploration of the Role of Mandated

Advance Health Care Directives in Medicare's Financing Crisis

By

Beth Kljajic

Advisor: Prof. Victor Lima

A Thesis

Submitted to the University of Chicago in partial fulfillment of the requirements for the degree of

Master of Liberal Arts

Graham School of General Studies

(June, 2009)Abstract

The oldest of the 72 million American "Baby Boomers" - those Americans born

between 1946 and 1964 - will be eligible for Medicare in 2011. By the year 2030, the

beneficiaries enrolled in Medicare are projected to rise from 46 million to 78 million.

Without a change in our current system, Medicare + Medicaid could grow to over 1/3 of

GDP, an untenable level. The number of workers paying taxes to support beneficiaries is

projected to decline from 3.7 workers per beneficiary to just 2.4 workers per beneficiary.

As of September 30, 2007, the projected expenditures for Medicare benefits paid under

today’s standards exceed earmarked revenues (i.e., dedicated payroll taxes and

premiums) by $34 trillion.

Currently, 30 to 35 percent of Medicare expenditures are spent on just five

percent of the elderly in the last year of their lives. This breaks down to for every one

hundred dollars spent on one hundred Medicare recipients, thirty-five dollars will be

spent on just five people leaving the other ninety-five people together spending the

remaining sixty-five dollars. On average those five dying people will spend ten times

what the other ninety-five people spent. One strategy for reducing astronomical end-of-

life medical costs is to require all beneficiaries of Medicare / Medicaid to have End-of-

Life Directives. This paper will explore the political and economic implications of

advance health care directives and their potential as an effective, choice-based

intervention in the exploding cost of health care for the elderly, particularly those among

them that are in the last twelve months of their lives.

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1 The Impending Financial Crisis for the Medicare/Medicaid Programs

1.1 The Demographics, aging and changing health care needs of the American population

1.2 Financial projections for the not very distant future

1.3 Knowledge may be powerful; give Americans the information they need to make decisions for their own lives and to take personal accountability for those decisions

1.4 Description of Advance Health Care Directives

2 The purpose and history of the Medicare/Medicaid Program for the Elderly

2.1 A Legislative Plan for America’s Elderly

2.2 The changing field of medicine and what that means for Medicare/Medicaid services in the 21st Century

3 The Americans who are affected by this crisis

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3.1 Those current Medicare/Medicaid beneficiaries and those members of the Baby Boom generation who will begin to join in the next two years

3.2 The current members of the American workforce who are paying the taxes to support this system

3.3 Future generations of Americans who will be requiring to continue this system and its heavy debt load

4 The Current Method of Providing Medical Services to Medicare/Medicaid Beneficaries

4.1 Actual case studies about Medicare/Medicaid beneficiaries that happened in the last fifteen years

4.2 American Healthcare and our somewhat unique approach to old age

5 Other Options for Medical Services for the Elderly

5.1 How other nations treat this issue: Rationing and Death with Dignity Laws

5.2 Educating Americans on the life cycle of the species

6 Who Argues for and against What Options

6.1 Politics: usual and unusual

6.2 Religious institutions

6.3 The harm that may be caused by forcing Americans to explore, research, learn about and make informed decisions about their own death

6.4 Economic issues such as lack of incentives, fairness issue, efficiency of expenditures

7 Advance Health Care Directives as One Component of the Proactive Changes That Must be Made to Medicare/Medicaid service to save some portion of it

7.1 As members, both givers and takers, in a society there are rights and responsibilities within each system

7.2 Unless those members are willing to also assume the responsibilities for themselves they have the ability to bring down an entire society, the people and the structure

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1 The Impending Financial Crisis for the Medicare/Medicaid Programs

1.1 The Demographics, aging and changing health care needs of the American population

The oldest of the 72 million American "Baby Boomers" – those people born in the

post war years of 1946 to 1964 - will be eligible for government funded health insurance

programs in 2011. Without a change in our current system, Medicare + Medicaid – the

programs for those 65 years of age and older with additional funding for the low income

elderly, could grow to over 1/3 of GDP, an untenable level. This one third of the GDP

will not be able to be invested in productive alternatives such as the education of the

people in our nation or any other, national or local infrastructure development, research

and development of new sources of energy, better agricultural methods, environmental

safety for the whole planet, new technology in dozens of fields or a multitude of other

valuable purposes. Instead much of it will be spent on prolonging the life, without regard

to its quality, of terminally ill people entering the final phases of their lives. As the

system works now, one of every three cents produced in this country will be directed

towards this endeavor.

A very wise man, Peter Peterson summed it up by saying, “Global aging is like a

massive iceberg which very well could destroy even the most powerful economic vessels

in the world.”1

1 P. Peterson, Gray dawn: How the Coming Age Wave will Transform America and World, (New York: Random House, 2000).

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1.2 Financial projections for the not very distant future

The Financial Threat

Economics of this issue are the root of this problem. If our nation had limitless

resources, there would be no dilemma in terms of addressing the future health care costs

of our aging population and the burden thereby placed on current and future generations

of working Americans who will be paying for it. But we do not have unlimited funds, and

in good economic times or bad, we must make conscientious and carefully planned

choices about how to allocate the funds that we do have. The demands on those funds

will be substantial, but those demands must be tempered by the seriousness and

magnitude of the implications of the choices we make regarding the way we care for our

aging and elderly members of our population.

From 2010 to 2030, the number of people on Medicare is projected to rise from

46 million to 78 million, while the number of workers paying taxes to support

beneficiaries is projected to decline from 3.7 workers per beneficiary to 2.4 workers per

beneficiary.2

The frightening financial projections continue. As of September 30, 2007, the

projected expenditures for the benefits paid under today’s standards exceed earmarked

revenues (i.e., dedicated payroll taxes and premiums) by approximately $41 trillion over

the next 75 years in present value terms. Of that $41 trillion , $34 trillion is related to

Medicare programs.3 P. 7 And the ‘earmarked revenues’ are based on dedicated payroll

2 www.kaisernetwork.orgMedicare Spending and Financing Fact SheetInformation provided by the Medicare Policy ProjectPublication Number: 7305-03Publish Date: 2008-09-023 GAO-08-912T Statement of Social Insurance in the 2007 Financial Report of the

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taxes that are also projections which do not reflect the economic downturn starting in late

2008. Thirty-four trillion is a very large number of dollars to be short for a program

which is planning to cover the health care costs for more than one hundred million people

during the same seventy-five year period.

1.3 Knowledge may be powerful; give Americans the information they need to make decisions for their own lives and to take personal accountability for those decisions

There are many options available to America and its citizens for dealing with this

crisis. From an economic perspective, unlike the ethical, religious, moral perspectives,

there are no right or wrong answers. What won’t change is the fact that Americans are an

aging population. What’s important is that we face, discuss, research and incorporate one

or more of the components that will allow us to control this rapidly on-coming financial

threat and to benefit as a society from these changes.

In 2000, Bill Moyer produced and anchored an award winning Public Broadcasting

System television series titled, On Our Own Terms. It is the basis of a national outreach

effort to encourage discussion and community action on end-of-life issues. It is available

on-line and is a well-produced program discussing a wide range of contents. It omitted

one ‘minor’ detail: how to finance the Medicare system. Nor did it address how the dying

elderly in the final year of their life use such a large portion of available Medicare

dollars. This subject is neither politically correct, religiously correct and nor a fun one to

debate over a nice hike in the mountains of Arizona. But that does not change the fact

that we are short at least $34 trillion and that we must find a way to either finance or

change this program and must do it in the very near future.

United States GovernmentPage 7 0f 62

There are many options open to the American people on how to deal with this

oncoming financial crisis. None will appeal to all. Some will be favored by some of the

people. Some will be favored by other members of our population. Some people will not

like any changes at all. And our elected officials, religious leaders, powerful lobby

organizations, medical communities and insurance companies all will impart their ideas

and wisdom upon the issue. What I propose is not the answer to end of all answers.

Instead, there is a very simple legal process, available at no cost to the population in all

fifty states. Advance Health Care Directives are a device to help people prepare and take

responsibility for their own future, decades before most of them will ever need to use the

decisions they’ve made.

The strategy I’m proposing for beginning the process of reducing the astronomical

government funded health insurance programs end-of-life medical costs is to require all

beneficiaries of Medicare / Medicaid to have End-of-Life Directives starting before they

receive the first cent from the program. This paper will explore the political and

economic implications of Advance Health Care Directives and their potential as an

effective, choice-based intervention in the exploding cost of health care for the elderly,

particularly those among them that are in the last twelve months of their lives.

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1.4 Description of Advance Health Care Directives

An Advance Health Care Directive is a legal instrument, recognized and formulated

in each of the fifty states, that describes how a person wants his or her medical decisions

made ‘in the event of decisional or communicative incapacity’4 p xix. It is different than a

Living Will; you name an agent to make your medical decisions for you in the event you

are no longer able. That named agent is assigned the power of attorney to do so. Living

Wills may be limited to direct instructions about your end-of-life care which can and are

be problematic if what happens to you isn’t covered in the instruction set. These legal

instruments are written based completely on your personal preferences and may or may

not actually decrease Medicare spending on an individual basis.

4 Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook for Professionals. Chicago: American Bar Association.

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2 The Purpose and History of the Medicare/Medicaid Program for the Elderly

2.1 A Legislative Plan for America’s Elderly

Contrary to the heated public debate over the subject, the United States of America

does actually have a federal health care coverage and insurance program. The largely

unspoken issue with this program is that it is only for those Americans who are very

poor, children, the disabled or those aged sixty-five or older, mostly this latter group. It’s

the working poor and employed-but-uninsured people who choose not to purchase their

own health insurance policies, the very people paying Medicare payroll taxes, who are

not included in our federal health care coverage programs. Both the uninsured and

insured working Americans who pay their Medicare payroll taxes to support those elderly

currently participating in the government funded health insurance programs are a part of

the 3.7 workers per Medicare beneficiary that is working itself down to just 2.4 workers

per Medicare beneficiary in the not very distant future.

The Medicare program itself just celebrated its 44th birthday. Medicare and

Medicaid were signed in to law in 1965 under President Lyndon B. Johnson; they passed

in the House with a vote of 313-115 and in the Senate 68-21. Actuaries at the time

estimated that the monetary costs of the bill which passed was about $3 billion a year;

that is an equivalent number to about $19 billion in 2007 dollars.5 A variety of groups

opposed the original legislation for an equal variety of reasons. The American Medical

association (AMA) suggested the program would ‘endanger the relationship between

patients and doctors’ according to its then President, Donovan Ward. A B-movie actor,

originally from the State of Illinois, was emerging as a political force and starting in 1947

5 Aaron, H., Lambrew, J. (2008). Reforming Medicare: options, tradeoffs, opportunities. Washington, D.C.: Brookings Institution Press.

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served seven years as the Screen Actors Guild (SAG) President. At this point in his career

he was a Democrat but would later switch parties and serve as both a Governor and U.S.

President. His name was Ronald Reagan and he spoke strongly about Medicare being a

program that would invite socialism which would then ‘invade every area of freedom in

this country.” I researched the Internet in an attempt to learn the total amount of Medicare

dollars spent in his final year when he was dying from complications of Alzheimer’s

disease. I was unable to ascertain a financial cost but perhaps he was correct to worry

about lost freedom; he certainly lost his, due to his Alzheimer’s. “Today, Medicare

beneficiaries with Alzheimer’s account for 34 percent of Medicare spending, even though

they constitute only 12.8 percent of the population over the age of 65. With the nation’s

77 million baby boomers approaching old age, the number of Americans with the disease

and associated costs are projected to soar.”6 President Reagan spoke to us about this very

issue when he stated, “I have recently been told that I am one of the millions of

Americans who will be afflicted with Alzheimer's Disease... At the moment I feel just

fine. I intend to live the remainder of the years God gives me on this earth doing the

things I have always done... I now begin the journey that will lead me into the sunset of

my life. I know that for America there will always be a bright dawn ahead. Thank you,

my friends. May God always bless you.”7 The questions he left open were how long that

sunset of his life was going to last according to God, how much money it would cost the

American taxpayer to fund it and whether he still valued those “sunset” years given that

he’d lost all his freedom due to Alzheimer’s are different issues.

6 http://seniorjournal.com/NEWS/Alzheimers/4-06-24Breakthroughs.htm7 "The Alzheimer's Letter". PBS. http://www.pbs.org/wgbh/amex/reagan/filmmore/reference/primary/alzheimers.html.

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2.2 The changing field of medicine and what that means for Medicare/Medicaid services in the 21st Century

Medical science in the past fifty years has afforded us with life saving

technologies unavailable to those who lived before our times. There are so many

enhanced treatments now and more emerging every day. From vaccines against polio to

chemotherapy for cancer patients to dialysis equipment to coronary angiography for

open-heart surgery. Add artificial heart valves, better antibiotics, ventilators and the list

keeps expanding. These new forms allow medical professionals to both treat and expand

the lives of millions of people who in earlier times would have succumbed to their

illnesses. But none of these advances, to date, has changed the fact that humans only live

a certain number of years and at some point will die of causes related to old age itself.

The elderly and frail and ill part of population may or may not benefit from all these new

forms of medical treatment. The very word ‘benefit’ itself has been one of the focal

points of disagreement between the people and organizations beginning to address this

issue. What is a benefit and how should it be defined? Quality of life versus quantity of

life begins to take a larger part of the decision making at this point. But by the time most

adults have reached ‘this point’ it’s to late to start the discussion.

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3 The Americans who are affected by this crisis

3.1 Those current Medicare/Medicaid beneficiaries and those members of the Baby Boom generation who will begin to join in the next two years

While Medicare is totally digitally-run the numbers are never quite as clear as they

should be. In 2007 approximately 36.9 million people of the age of sixty-five and another

7.2 million disabled people (of all ages) are covered by the Medicare insurance program.

Total benefits paid were $425 billion. Income was $462 billion and expenditures were

$432 billion. Assets held in special issue U.S. Treasury securities grew to $369 billion.8

There are multiple components to the program and more effective, usually better pieces

are being added. The first is Part A which is the Hospital Insurance (HI) covering

inpatient services, home health care, nursing homes, assisted living and hospice care. A

worker, and his/her spouse, must have paid Medicare payroll taxes for at least forty

quarters (ten years total) to be eligible for this portion of the program for free.9

8 2008 ANNUAL REPORT OF THE BOARDS OF TRUSTEES OF THE FEDERAL HOSPITAL INSURANCE AND FEDERAL SUPPLEMENTARY MEDICAL INSURANCE TRUST FUNDS 9 http://questions.medicare.gov/cgi-bin/medicare.cfg/php/enduser/std_adp.php?p_faqid=2100

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3.2 The current members of the American workforce who are paying the taxes to support this system

The 3.7 workers per Medicare beneficiary, who today fund the Medicare program,

do so by paying a 2.9% payroll tax that is levied on all their earned income. It does not

have a maximum earnings cap as, for instance, does the Social Security/FICA payroll tax.

There is a deductible amount of $1,068 per illness (2009), for each Medicare participant

when they enter the hospital. After that time, Medicare pays the rest of the hospital costs

for sixty days; there may be more ‘cost’ sharing by the Medicare beneficiary after the

sixty-day period.

Medicare Part B, known as the Supplemental Medical Insurance (SMI), covers

costs including for Medicare eligible physician services, outpatient hospital services,

certain home health services and durable medical equipment. Even though the names are

similar/same, it is not Medicare Supplemental Insurance which have government

mandated coverage requirements and may be purchased from private insurance providers.

Participants in Part B buy their coverage, usually withdrawn from Social Security checks.

The government so heavily subsidizes this program that it would be difficult to find a

private insurance provider who could effectively compete with the prices and coverage

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provided. There are income-based determinants for the premium amounts for Medicare

Part B coverage but the 99% of Americans qualify for the lowest amount of $95.4010. The

table below shows the premium for 2009:11

You Pay If Your Yearly Income isMonthly Premium Single Married Couple

$96.40 $85,000 or less $170,000 or less$134.90 $85,001-$107,000 $170,001-$214,000$192.70 $107,001-$160,000 $214,001-$320,000$250.50 $160,001-$213,000 $320,001-$426,000$308.30 Above $213,000 Above $426,000

According to the paper, "Senior Century: A Legislators' Guide to Seniors' Health

Care Issues," written by Merrill Matthews, Jr., Ph.D. and Jim Frogue for the Council of

Affordable Health Insurance the federal government pays for 75% of Part B costs out of

general revenues. The premiums and a $135.00 deductible (2009) paid by the

beneficiaries don’t come close to covering the costs of the program itself. The 1970

average per beneficiary cost of $356 is to $1,902.42 in 2007 dollars. But today, as of

2007, the average per beneficiary cost is $10,460; more than five times higher than the

adjusted amount paid out in 1970 for each Medicare beneficiary.

While the system is continually changing, there are not enough changes

happening quickly enough to address the impending crisis. Medicare+Choice program, or

Part C, was enacted by the Congress in 1997. This was the first time the Medicare

program allowed seniors to leave traditional Medicare and join a private sector health

10 http://www.cms.hhs.gov/apps/media/press/factsheet.asp?Counter=3272&intNumPerPage=10&checkDate=1&checkKey=&srchType=1&numDays=7&srchOpt=0&srchData=&keywordType=All&chkNewsType=6&intPage=&showAll=1&pYear=&year=0&desc=&cboOrder=date11 https://questions.medicare.gov/cgi-bin/medicare.cfg/php/enduser/std_adp.php?p_faqid=2099&p_sid=L_uk7Quj&p_lva=2100

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plan, usually in the form of an HMO. That initial change in the program has been updated

by Medicare Advantage which itself was enacted in November of 2003.

Most Americans reading this paper will be aware of the latest legislation passed

since it was so widely covered in all types of press and media. The Medicare prescription

drug benefit was scheduled to begin in 2006. And Medicaid covers many of the costs

associated with this new prescription drug program for any low-income elderly

beneficiaries. This portion of the benefits is still new, constantly changing and far from

being a complete answer to the prescription drug problem(s).

Why Advance Health Care Directives Would Be an Effective Component of the Solution

“Health care expenditures in the United States exceeded $2 trillion in 2006 and

are expected to rise rapidly during the next decade. A disproportionate share is spent at

the end of life (EOL). Thirty percent of Medicare expenditures are attributable to 5% of

beneficiaries who die each year; about one-third of the expenditures in the last year of life

is spent in the last month. Previous investigations have found that most of these costs

result from life-sustaining care (eg, mechanical ventilator use and resuscitation), with

acute care in the final 30 days of life accounting for 78% of costs incurred in the final

year of life.

A recent study using data from a longitudinal multi-institutional cohort study,

Coping With Cancer (CWC), showed that End Of Life conversations between patients

and physicians are associated with fewer life-sustaining procedures and lower rates of

intensive care unit (ICU) admission. These findings suggest that EOL discussions might

reduce health care expenditures by reducing the use of ICU care by patients with cancer.

Singer and Lowy have suggested that policies asking patients about their wishes

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regarding life-sustaining treatment and incorporating them into Advance Health Care

Directives might result in cost savings by reducing undesired care at the EOL. However,

other researchers have not found an association between Advance Health Care Directives

and cost reduction. To our knowledge, the association between patient-reported

discussions of EOL care preferences with their physicians and health care expenditures

has not been well studied.”12

12 Health Care Costs in the Last Week of LifeAssociations With End-of-Life ConversationsBaohui Zhang, MS; Alexi A. Wright, MD; Haiden A. Huskamp, PhD; Matthew E. Nilsson, BS; Matthew L. Maciejewski, PhD; Craig C. Earle, MD; Susan D. Block, MD; Paul K. Maciejewski, PhD; Holly G. Prigerson, PhDArch Intern Med. 2009;169(5):480-488.

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5 Other Options for Medical Services for the Elderly

1.4 How other nations treat this issue: Rationing and Death with Dignity Laws

America is not alone in facing this issue. Many countries including Japan, Italy,

Germany, among others have populations more aged than the United States and are

reproducing even fewer babies, who will at some point enter the workforce and pay their

taxes, to compensate for the increasing number of elderly. Thousands and thousands of

pages could be written about the different methodologies for addressing this societal

dilemma. Almost all countries with nationalized health care programs, such as the United

Kingdom, Canada and France, have chosen rationing as a significant component of their

methodology. They simply don’t treat specific illnesses in people older than a pre-

determined age. And they make if very difficult for medical professionals to offer pay-

for-services to patients who can afford to go outside of the national healthcare system.

Some states, including Oregon and Washington, as well as countries such as the

Netherlands, Belgium, Albania and Luxembourg, allow for either active euthanasia or

physician-assisted suicide. Other countries such as Switzerland, where it is not legal,

choose not to take any legal or punitive actions against doctors who perform euthanasia.

While it appears that these forms of euthanasia are gaining increasing support in many

countries, the number of people actually using the legal forms of self-determination is

still very small. Most of the people who do appear to be using this form of life ending

medicine are not elderly; they are terminally ill and suffering because of their illness and

its treatments.

Many nations do not now, nor will they in the future, have the economic resources

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to provide these life-sustaining services to the terminally ill elderly or even to their young

people. The real question is does any nation, rich or poor, have the financial wherewithal

to provide curative medical services to their aging populations in the final year or years

of their lives. The Greek and Roman ‘phases’ of life were multiples of seven and were

“understood to be a part of the natural order.”

Due to the lack of studies related to Advance Health Care Directives, their ability

to positively impact the end-of-life medical care costs for the elderly has not been proved

or disproved. I suggest, based on the simple fact that nearly 35% of Medicare+Medicaid

dollars are now currently spent on the final months of life for terminally ill patients, that

the evidence for profound cost savings were Advance Health Care Directives to become

mandated will manifest itself quickly. And given the above referenced limited number of

studies that were performed regarding advanced health care directives for use as a tool

reducing the Medicare costs for the elderly recipients in the last year of their life, they

have the ability to make significant differences in the types of care we choose to receive

for ourselves in the future.

Advance Health Care Directives place the decision-making for the end of each

person's life in his or her own hands – not in the hands of the State, not in the hands of

their adult children and grandchildren, not in the hands of their religious leaders, not in

the hands of the legal system or even their own doctors – at a time when they are willing

and able to make such decisions. They may be influenced by others, but during a time in

their life cycle when they are healthy and can inform themselves about options and make

educated plans, not at a time when they are already terminally ill. This concept is about

personal responsibility, accountability and self-determinization. If we are given the facts

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including the monetary costs, the effects of curative treatments and the statistical odds of

success, when we are healthy adults we may choose to make decisions that will have

dramatic cost containment results on our medical care in the final days of our lives.

Based on the statistics cited in this section, many or even most Americans could

and may select end of life health care options that will reduce the costs of their medical

care in the last months of their lives and even provide them with significant palliative

care that will make them more comfortable and to allow them to die with dignity instead

of hooked up to endless and futile machines and treatments. Dignity is not engraved in

stone; different people, different religions, different cultures, different socio-economic

stratus all have views of what dignity is. Yet by allowing, even mandating, American

adults to make these type of decisions prior to their terminal illness they can then

demonstrate their personal understanding of dignity. Through an advance directive, they

will be able to ensure that they are treated in a way, or in what they currently believe is a

way, which will afford them the highest level of dignity in the final throes of death. There

are no right or wrong answers and each person may choose for his or herself their own

answer.

Up until the 1950’s most American’s died in their own homes lacking the types of

medical services, machinery and medications that are available in the 21st century. Data

from the National Vital Statistics System (NVSS), which collects death certificate records

from all fifty states, shows that more than seventy percent of our population currently

dies in hospitals, nursing homes and assisted living centers. Due to this huge proportion

of the dying elderly spending their final days in medical care facilities, 30 to 35 percent

of Medicare expenditures are now spent on just five percent of the elderly in the last year

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of their lives. This breaks down to for every one hundred dollars spent on one hundred

Medicare recipients, thirty-five dollars will be spent on just five people. The other ninety-

five people together spend the remaining sixty-five dollars. On average those five dying

people will spend ten times what the other ninety-five people spent. To discuss these

Medicare+Medicaid tax dollars as a national resource and to imply that there are better

allocations for our tax spending is an unpopular position to broach. Politicians and

government bureaucrats who must take these kinds of stands and make these types of

decisions are faced with some unpleasant realities. Perhaps we, the people, can help them

begin to address these difficult types of issues by taking care of our own spending and

ourselves.

If those five dying elderly Medicare recipients were aware, long before they

reached the time of age and terminal illness in their lives, of what the financial costs

would be to extend their life another thirty or sixty days, they might not choose to do so.

Each person entering the Medicare program should be told in a brief and concise way that

their own health care treatment costs will be paid for by 2.4 American workers being

taxed 2.9% of their income. Given that information, some of these Medicare+Medicaid

beneficiaries-to-be might have serious thoughts about how they will use those dollars. I

argue that given these facts, many Americans would, through the use of advance

directives, make different choices for themselves than are currently being made by family

members, medical professionals and courts. And, through this method of mandated

Advance Health Care Directives, Americans would begin to decide on and sign their own

at much earlier ages and during better periods of health.

Medicare+Medicaid may have been designed correctly for the medical science

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available at the time it began, 1965, and is still able to provide beneficial coverage to

healthy people who have a disease that may be treated and cured. It may never have been

intended to take care of those dying, terminally ill elderly passing away in hospitals and

nursing homes. In the Denial of Aging book, Dr. Gillick cites another of her publications

and describes Medicare as “favoring institutional care over home care, it supports

technology-intensive treatment rather than labor-intensive care, and it fails to provide

adequately for chronic diseases.13

She identifies countless ways to recreate Medicare for our aging population.

Rationing, Death-with-Dignity laws like those in the states of Oregon and Washington,

higher co-pays and gaps in coverage are all discussed. This paper is not about those

concepts but about a simple way of encouraging and requiring adults to make their own

end-of-life health care decisions well in advance of that time.

What Should the End-Result Goal be In Providing Medical Care to the Elderly

First, I should define what the term elderly means in this paper. As defined by

http://www.merriam-webster.com/dictionary/elderly it means basically nothing.

1 a: rather old; especially : being past middle age b: old-fashioned

2: of, relating to, or characteristic of later life or elderly persons.

As the Baby Boomer generation is so fond of saying, “Fifty is the new thirty.” We

consider ourselves to be just starting middle age at fifty. This generation continues to be

strong, healthy, independent members of our society. But at some point in our life spans,

we will begin to reach the end of the cycle itself. It may be at sixty-five years of age, the

current number for entry in to the Medicare system. It may be at eighty-nine years of age,

13 Gillick, M., Mitchell, S. (2004), A Framework for Meaningful Medicare Reform, Journal of Aging and Social Policy, 16:1-12.

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the time when we are no longer able to walk eighteen holes of golf. It may be at the grand

age of one hundred, when we still walk to work, enjoy our wine with dinner and tell

stories of Asian travel in the 1920’s, while we can’t remember what happened yesterday.

So it’s not an age carved in stone anywhere but it is a definite phase of life that we, as all

living creatures do, will experience. This does not have to be a bad process. If we are

provided with care to help us be more comfortable, experience less pain and fear, we may

be able to pass through the dying stages with dignity and grace.

Dr. Muriel Gillick sums it up so clearly when she states, “The goal of screening

tests and physical examinations in old age is not to stave off death, a hopeless and

counterproductive aim. “14 p. 36 One of the components of this difficult subject matter is

the issue of what kind of care should actually be provided to the elderly and terminally ill

aged-patient. There is curative care, that we provide and finance for our elderly today,

whose goal is to cure the disease or illness from which the patient is suffering. A seventy-

eight year old woman, with a past history of heart disease and surgeries for both her heart

and her lung cancer, is not going to be ‘cured’ of her current valve blockage and cancer in

her remaining lung. She is going to die; the question is at what financial cost to the

Medicare system, suffering how many types of side effects from her treatments and with

a quality of life that she may not have selected if given the option, either currently or at

an earlier point of time in her life.

14 Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University PressPage 23 0f 62

4 The Current Method of Providing Medical Services to Medicare/Medicaid Beneficaries

4.1 Actual case studies about Medicare/Medicaid beneficiaries that happened in the last fifteen years

Dr. Gillick describes four factors as affecting the decision making process in the

care of an elderly person. First the low effectiveness ratio of possible treatments, next the

high burden related to medical care imposed on the patient, financial costs and imminent,

impending death. She describes the actual experiences of one of her patients in great

detail and speaks to the issue of burden of her treatments that, while unable to increase

her life for much longer, did cause her to “feel pain – her moans, her grimaces, and her

expressive eye movements in response to painful stimuli…”15 p. 74. The woman whose

case was written about had two daughters managing her health care and treatments.

Given that this woman was at the time of her death ninety years old, her daughters must

both have been at least sixty years old each. They even admitted that their mother had

never spoken about wanting her life prolonged in this type of torturous way and that she

did not practice a religion that forced it upon her. The daughters themselves felt bound to

subject her to these treatments as a result of their own religious convictions. The type of

religion itself wasn’t mentioned but at most other times of a persons life, if they were

being treated in such a painful way it would usually be considered abusive and not

allowed even under the separation of church and state laws. And, of course, it wasn’t the

daughter’s money that was being spent on subjecting their dying mother to these types of

invasive and unsuccessful, in terms of saving her life, treatments. It was the American

taxpayers money.

15 Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press

Page 24 0f 62

The following law case serves as an example of the serious nature of these

types of decisions especially when left undecided until a patient is dying or family

members, suffering from their own anguish, have to make them. Dr. Ronald E.

Cranford, working in his role at Hennepin County Medical Center asked the Fourth

Judicial District Court, Hennepin County, Minnesota to help decide who makes the

final decision regarding the ongoing treatments for an 88-year-old woman, Helga

Wanglie, who was a patient at the hospital and was currently being kept alive by a

Ventilator system, although she was in a coma. Her hospital treatments began on

December 14, 1989 when Mrs. Wanglie slipped on a rug in her Minneapolis home

and broke her hip. The hip fracture itself was successfully treated and she was

discharged to a nursing home. She was re-admitted to HCMC on January 1, 1990,

seventeen days after the first accident happened, when she developed respiratory

failure and was placed on a respirator. Due to continuing respiratory problems, the

hospital was unable to wean Mrs. Wanglie from the respirator, and on May 7, 1990

she was transferred to another facility that specializes in the care of respirator-

dependent patients. She experienced a cardiopulmonary arrest on May 23. She was

resuscitated and then transferred to another acute care hospital in St. Paul. All the

medical professionals involved in her care now felt that she had extremely severe

and irreversible brain damage. Because of this prognosis, and the seemingly futile

chances of her improving, a hospital ethics committee reviewed her case and the

doctors discussed with her family limiting or stopping further life-sustaining

treatment. Her family refused to accept this limitation of services and requested that

Mrs. Wanglie be transferred back to HCMC, where they felt she had received

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excellent care. Keep in mind that what they described as excellent care did nothing

at all to improve the quality of Mrs. Wanglie’s life; it just kept her alive longer.

Since May 31, 1990 and the patient was readmitted to HCMC, she has been

vigorously treated with continued respirator support, antibiotics for recurrent

pneumonia, artificial feeding, and treatment for electrolyte and fluid imbalance. In

complete agreement with the medical professionals at St. Paul’s acute care hospital,

the initial diagnosis upon readmission to HCMC was persistent vegetative state

secondary to severe hypoxic-ischemic encephalopathy. Repeated evaluations by the

neurology and pulmonary medicine services confirmed the diagnosis of permanent

unconsciousness (persistent vegetative state), and permanent respirator dependency

because of chronic lung disease.

All the same issues referred to in this paper previously were part of Mrs.

Wanglie’s experience. Her advanced age, previous lengthy hospital stays at

HCMC in early 1990, multiple medical complications, unsuccessful weaning from

the respirator, and neurologic condition, the medical staff caring for Mrs. Wanglie

on a daily basis viewed her prognosis as extraordinarily poor. They did not believe

that the respirator could benefit her. But this leads back to the question of what is a

benefit and who is receiving it? Her immediate family--her husband, daughter, and

son--insisted that all forms of treatment be continued. Her family members did

agree to a Do Not Resuscitate (“DNR”) order if she sustained another heart attack

given that recovery, in her persistent vegetative state, from any cardiac arrest would

be extraordinarily unlikely.

Oliver Wanglie claimed to understand that due to her current status his wife

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is unaware of herself, her surroundings and his visits. When asked, repeatedly and

by multiple professionals, if he understood the medical diagnosis itself and that his

wife would not recover consciousness or improve in any significant way, he

replied, "That may be true, but we hope for the best." A major component of the

current legal dilemma is the definition of ‘the best’ and who decides what that is.

Yet neither this law case nor this paper is attempting to address that definition. We,

as healthy adults, may attempt to define this by our own Advance Health Care

Directive; then it will not be in the hands of a court to decide for us.

The family's continued refusal to discontinue treatment is based on their

religious and personal belief system. Mr. Wanglie has stated that only God can take

life and that doctors should not play God. Prior to December he told hospital staff

that his wife had not discussed these issues, and that her views were a "black box."

What Mr. Wanglie did not address was why he believed that life sustaining medical

treatments in the form of high levels of technology, machinery, prescription

medications, endless hospitals and expensive labor costs were part of God’s plan,

not that of man. Let’s for a moment agree to support his belief system and agree

that only God could take life; the good Lord seemed to be doing his/her best to take

his wife from this world. Man/woman, in the form of medical professionals, were

being asked by him, Mr. Wanglie, to prevent this from happening.

To return to the 1991 Minnesota case, Oliver Wanglie wrote, "My wife

always stated to me that if anything happened to her so that she could not take care

of herself, she did not want anything done to shorten or prematurely take her life."

Unfortunately, Mrs. Wanglie never wrote anything like this when she was capable

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and still healthy. And, to date, since the inception of her fall and hip surgery, Mrs.

Wanglie’s care had now cost Medicare and Physicians' Health Plan, a private

supplementary insurance plan that the Wanglie’s purchased, $800,000; in 1991

dollars. The amount in 1991 dollars has the same buying power as $1,246,361.23 in

2009. And that doesn’t take in to account the larger sized increases in medical

inflation; it’s an ‘average’ number.16

The hospital asked the court to appointment a conservator, not her family

member(s), to represent the patient to decide whether continued treatment is appropriate.

It did not directly request the court to discontinue treatment immediately over the

objections of the family. They asked for the court’s assistance in this issue so that her

family cannot make the demand that physicians continue to give treatment that is not in

the patient's best personal medical interest. $800,000 is a lot of money to spend on a

person in a vegetative state, who is in the natural process of dying and who will never

even know it was spent. This is not in anyone’s medical interest, expensive or not, and

should never be undertaken in this country for any of the seventy seven million baby

boomers whose lives are just beginning to enter their own final stages. The court ruled in

Mr. Wanglie’s favor and appointed him guardian of his wife in the final days of her life.

She died three days after the court ruling.

4.2 American Healthcare and our somewhat unique approach to old age

There may be several ways to provide care to the elderly, particularly the

terminally ill elderly. The first is to seek to extend their lives without regard to what the

type of life we may be able to extend for them will be like. Confined to a bed, hooked up

16 http://www.bls.gov/data/inflation_calculator.htmPage 28 0f 62

to one or more life-sustaining machines, medicated to a level to prevent pain, suffering

and human discourse, completely dependent on others, some known and maybe related to

and some not known, for their care. This care may be provided in their own home, in a

hospital setting, a nursing home or in a center for assisted living. This curative approach

may in fact work for some number of the elderly population. Their lives may be extended

by years and they may be healthy and productive. This form of “maximally aggressive”17

p. 42 may be due to fact that in America patients appear to be offered only two forms of

treatment: the curative form and comfort care such as hospice. The SUPPORT study, that

is the main source of information used regarding American preferences for the care of

seriously ill hospitalized adults, only offered those two options to the people responding.

The one they left out is defined as intermediate care; care that may not extend their lives

the same number of days but will give them options as to the side effects, quality and

methods for living out their last days. And the costs they, as the future recipients of

Medicare benefits, feel should be expended by the American people on those last ninety,

one hundred and eighty or three hundred days.

Today, the second most often provided care, after curative, is called palliative

(comfort) care or hospice care. It’s became a part of the Medicare system in 1983 and

provides care for patients with less than six months to live. “Palliative treatment: To

palliate a disease is to treat it partially and insofar as possible, but not cure it completely.

Palliation cloaks a disease. Also sometimes called symptomatic treatment.” 18 The root of

the English word palliative is derived from the Latin "pallium"; a type of cloak in ancient

Greece and Rome. The use of the word pallium later emerged as a white woolen band

17 Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press.18 http://www.medterms.com/script/main/art.asp?articlekey=10703

Page 29 0f 62

with pendants in front and back worn by leaders of the Roman Catholic church including

the pope or an archbishop as a symbol of full Episcopal, or universal, authority. As that

old Latin word continued it’s forward motion to contemporary meaning it began to be

either an adjective such as "cloaked" or "concealed" or a verb meaning "to cloak," "to

cloth," or "to shelter."

The reason for bringing up this palliative or symptomatic form of medical

treatment is that the purpose of these treatments is not curative or to cure the disease

itself. These types of treatments are intended to clock or conceal the symptoms of the

disease and by doing so perhaps shelter the person from its negative effects. Treating the

symptoms is a markedly different approach than treating the disease itself.

The American culture is not one that easily accepts losing; the medical

professional in our country are far from alone in their belief. So many of our beliefs are

based on the premise that if you give it one hundred percent effort, put your best faith

efforts forward, you will eventually find success. Unfortunately, for the dying and frail

elderly person, this is not so. No amount of effort, no amount of financial expense, no

amount of medical treatment will bring success in terms of a prolonged life filled with

quality and comfort. John D. Rockefeller summed the American thought process up so

well when he said, “I do not think there is any other quality so essential to success of any

kind as the quality of perseverance. It overcomes almost everything, even nature. ”19 But

that belief, which has contributed so much to making Americans themselves so

successful, simply is not self-evident when it comes to efforts to stave off death as a

result of old age. Nature and the cycle of life win one hundred percent of the time.

19 http://www.finestquotes.com/author_quotes-author-John%20D.%20Rockefeller-page-0.htm

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Woody Allen adds his perspective to the basic problem that we 21st Century Americans

are facing when he stated, “I don't want to achieve immortality through my work... I want

to achieve it through not dying.”20

The concept of hospice care itself is not new. But the business model of hospice

care in the United States wasn’t included in the Medicare program until 1983. In 1967 a

woman named Cicely Saunders founded St. Christopher’s Hospice in London. The goal

of this hospice was to provide dying patients with treatments that would make them more

comfortable as they passed through the end of their lives. These patients, today

numbering in the millions, may not be receiving curative treatments for their diseases or

illnesses but are still faced with so many issues including but far from limited to pain,

hunger, fear, anxiety, depression, confusion, lack of memory, embarrassment, shame,

inability to verbally communicate, loneliness, despair, unable even to control their own

body parts. Hospice serves not to prevent the oncoming death but to make it feel less

horrible to the patient. Perhaps even to allow the dying person to feel comfort, love and a

gentle form of support. By the time a person or their family members choose hospice

care, they have forsaken further attempts at curative care. It’s that intermediate range of

care between the two that may enable our aging population to face their life cycle in a

new and better way.

Dame Cicely Saunders was a highly educated woman; a nurse, social worker,

physician and pharmacology researcher. The program she originally established to

support the terminally ill has been duplicated and even enhanced in America today by

countless others. While the issues of staffing, funding, educating the caregivers and so

many more are far from answered in nursing home, assisted living and rehabilitation

20 http://www.quotationspage.com/quotes/Woody_AllenPage 31 0f 62

centers, hospice is one of the answers to this impending medical crisis. One of the goals

of using advance directives is to provide information to family members and medical

staff about the care each of us would like to receive in our final days/months on Earth. If

hospice care is the choice that a person would like to make when the time presents itself,

it is critical that that information is available to those who will need it to make the

arrangements for that care.

Another way of addressing terminal illnesses in the elderly is often referred to as

intermediate care but this type of service is rarely offered or studied. “The medical

profession tends not to consider intermediate care because physicians assume that

patients are interested either in life-prolongation or in comfort care,”21 p. 43 according to

Dr. Gillick, Associate Director of the Geriatrics Fellowship Program at Harvard Medical

School and in clinical practice at the Hebrew Rehabilitation Center for Aged in Boston.

There are actually other choices, which an advance directive may provide for a patient

decades after drafting it. There are statistical odds associated with medical treatments; at

one level it is a gambling game. Intermediate care is best described as a treatment

methodology somewhere in between aggressive and statistically doomed-to-fail care for

the terminally ill elderly and the comfort/hospice type care for those in the final throes of

dying. This type of treatment protocol considers the multitude of side effects including

but far from limited to the development of new diseases, treatment and hospital related

infections, acute pain, mental disorientation, lengthy recuperation periods, lower levels of

ability to function physically, the withdrawal from many types of post-operative drugs

and abject fear and provides information to the patient and family members about the

21 Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press.

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alternatives available.

Medicare, in its current modus operandi, does not support intermediate

care very well. Medicare supports, through the various ways it pays for services provided,

the use of high-tech rather than low-tech care, institutional care versus home care, and

treating illnesses as if they were all acute rather than simply chronic and not ever going to

be ‘cured.’

One reason for this lack of offering of immediate care options has been attributed

to the training American physicians receive beginning in medical school. Death is the

enemy and is to be fought off at all costs. The costs in capital, i.e. Medicare spending,

and human suffering terms are not really considered. “But the potential to cause needless

pain and suffering while simultaneously breaking the bank is at its greatest as we get

closer to the very end of life. The temptation to keep on the fight, to summon the heavy

artillery, is enormous when death is the alternative. The truth is that at the very end of

life, death is no longer an ‘alternative’ --- a locution that suggests there is another

possibility. Death is the only possible outcome. What we can control is not whether or

not we die, but the style in which we do it.”22 P 63 And that ‘bank’ that Dr. Gillick refers

to is not the patients piggy bank. It is the Medicare tax dollars being collected from the

working Americans at the time the patient is using his/her medical benefits.

SUPPORT, a widely publicized research study funded by the Robert Wood

Johnson Foundation (RWJF) between 1989 and 1994, found that in excess of 80% of

hospitalized dying patients in America experienced the three following conditions:

* Still died in uncontrolled pain

* Were hooked up to machines until just a few hours before they died

22 Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press.Page 33 0f 62

* Did not, for the most part, have Advance Health Care Directives such as a

living will; even if a patient had an advance directive, it was often not followed23.

Having an Advance Health Care Directive and ensuring that it was followed

might have prevented the first two conditions. Advance Health Care Directives or living

wills are not meant replace new and helpful components and methods of delivery of

health care for the elderly. Medicare is now funding chronic care improvement programs

and teaching about disease management so that patients and their caregivers can make

changes that may to lead longer and healthier lives lived by the aging population. But

these good programs do not change the fact that at some point in time, we are dying and

that has become the most expensive time in our lives.

2 Who Argues for and against What Options

2.1 Politics: usual and unusual

The following quote, often cited not in it’s correct version, was in a speech made

by Richard D. Lamm, former Colorado governor and now director of the Center for

Public Policy and Contemporary Issues at the University of Denver, "We've got a duty to

die and get out of the way with all of our machines and artificial hearts and everything

else like that and let the other society, our kids, build a reasonable life." This speaks

directly to the issue that our lives are not permanent here on Earth and that the expense of

prolonging and attempting to extend them beyond a time that allows us to actually live

them is not in the best interest of our society and it’s members.

2.2 Religious institutions

As a part of the opposition against the proposed 2000 Death with Dignity

23 http://www.rwjf.org/pr/topic.jsp?topicid=1194&p=osPage 34 0f 62

legislation in the State of Maine, the Christian Civic League added to the fight, in total

disagreement with Governor Lamm that, “passage of this legislation might make Maine a

state in which our elderly may feel an obligation to die” (Health 2000). And when it

comes right down to it, the obligation may not be to die but not to charge the America

people a very large amount of money and resources to try to live longer for a short period

of time.

Not all Americans, of any age, are going to agree with this position regardless of

the costs associated with it. A 90 year old woman ‘suffering’ from advanced Alzheimer’s

disease was being kept alive because her daughters had religious convictions that

supported their belief that suffering was of little consequence compared to the

immeasurable value of life itself. So she was treated for pneumonia by oxygen, Tylenol

and a morphine drip. From there she was transferred to an acute care hospital where she

was hooked up to a respirator. She then had a heart attack and stress ulcer. Add to this the

intravenous catheters inserted in her veins, the extensive blood transfusions and the

details that all the while the elderly patient herself was attempting, and sometimes able, to

remove them. At this point, she hadn’t been able to eat for over a year so just providing

nutrition to her was a challenge. If I wanted to punish my parent(s) or spouse, I can’t

think of a better system for succeeding in my aims.

The National Conference of Catholic Bishops issued a directive on health

care by asserting that ‘a person has a moral obligation to use ordinary or

proportionate means of preserving life. But even these conservation stalwarts of

religious morality explain that “proportionate means are those that in the judgment

of the patient offer a reasonable hope of benefit and do not entail an excessive

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burden or impose excessive expense on the family or the community.” 24 The

woman, whose Alzheimer’s and other illnesses were described above, wasn’t

making any such judgments at this point in her life and her daughters, in their

expressed love, did not incorporate either ‘reasonable hope’ or ‘excessive burden’

in to their decision making process. I do not care to receive any of the ‘benefits’

that she was being subjected to in my future phases of life.

These issues are not new and they are not in anyway unique to the

American experience of the 21st century. As the esteemed philosopher Sir Thomas

More wrote about in 1515 in his book Utopia, “Let’s face it, you’ll never be able to

live a normal ife. You’re a nuisance to other people and a burden to yourself – in

fact you’re really leading a sort of posthumous existence. So why go on feeding

germs? Since your life’s a misery to you, why hesitate to die? You’re imprisoned in

a torture-chamber – why don’t you break out and escape to a better world? Or say

the word, and we’ll arrange for your release. It’s only common sense to cut your

losses. It’s also an act of piety to take the advice of a priest, because he speaks for

God.”

It wasn’t about cash then but actual resources in the community. Sir

Thomas More even had the audacity to incorporate the Catholic Church’s alleged

approval of the decision that a person could/should make to end their life in its final

stages. Almost five hundred years ago and the same discussions were going on for

the same reasons. Medical treatments have improved in a geometric progression but

there still is an end to human life and we are still going to die when we have

24 Ethical and Religious Directives for Catholic Health Care Services, Fourth Edition NCCB/USCC, June 15, 2001, United States Conference of Catholic Bishops, Inc.

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reached that time.

In the Helga Wanglie law case, the court decided the case strictly as a

guardianship matter and did not address the appropriateness of treatment issue. Nor

was it asked to do so by either party. No new or more cost effective rulings were a

result of this women’s long drawn out end-of-life story. Yet, “Perhaps there will be

fewer Helga Wanglie if facilities ensure that patients upon admission learn about

"advance directives" - as well as about the mess that can occur when they fail to

make their wishes clear.”25

2.3 The harm that may be caused by forcing Americans to explore, research, learn about and make informed decisions about their own death

Daniel Hillyard summed it up so well when he stated, “we chronicle the

growing awareness of the shortcomings of medicalized dying the concomitant

perception that there exists a “right way” – meaning a desirable way – to die.”26

Dying is not a task that is high on my list of things I want to do anytime in the near

future. Nor do I want my close family members or friends to be a part of this

process. But neither of those emotional feelings change the fact that one day, in the

far future I hope, the time will come. When I am eighty-three years old, spending

$800,000 or more on keeping me alive a few more months does not make a lot of

financial sense to me. Name the hospital room for me, send a kid to medical school,

pay for research on some non-fossil fuel energy source, do a lot of things that my

life stood for but don’t charge the working Americans and their children to

25 Capron, Alexander Morgan. Publication: The Hastings Center Report. September 1 199126 http://www.articlearchives.com/law-legal-system/trial-procedure-judges/989493-1.html

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accomplish this goal of extending my life beyond the time I was meant to die.

“Might ever there come a point when hundreds of thousands of dollars spent on life

support for one person in an irreversible coma should be redirected to, say,

immunizations or prenatal care for scores of others?”27 p. 50 As a part of this thesis

process, I, proud owner for many years of an outdated living will, have also

completed the attached advance healthcare directives. I didn’t know about them,

their purpose or why it was important to our great nation that we fill them out

before I researched this Medicare crisis.

7 Advance Health Care Directives as One Component of the Proactive Changes That Must be Made to Medicare/Medicaid service to save some portion of it

2.4 As members, both givers and takers, in a society there are rights and responsibilities within each system

Perhaps what this topic is really about is rights and responsibilities. No one wants

to loudly proclaim, “take all those dying old people out of the hospital beds and send

them home and let them die!” It wouldn’t be popular with the voters, the politicians

would have to speak out for the elderly, the church ladies would be forced to spend extra

prayer time on all the ill old folks, and the senior citizens themselves would feel fear and

not loved. None of this changes the fact that terminally ill and dying elderly Americans

were once not terminally ill and dying. We have the responsibility to act in the best

interest of our nation and our children when we accept our right to take the vast amount

of Medicare dollars from those Americans working to pay our health care bills.

27 Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook for Professionals. Chicago: American Bar Association.

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2.5 Unless those members are willing to also assume the responsibilities for themselves they have the ability to bring down an entire society, the people and the structure

Most terminally ill and dying elderly people created their own future footprint on

planet Earth when they reproduced offspring. They must be willing, when they are still

able, to plan for their own future and the future of their offspring. There are monetary

efficiencies inherent in this framework for the future and they must be considered by each

adult when making their own advance directive decisions. Is it the intent of a working

mother named Shellie, aged thirty-nine, that her seven-year old son spend almost three

cents of every dollar that he and his wife earn starting in about twenty-six years on her

health care and if so, is Shellie willing to put that in writing. Or if Shellie is faced with

immanent death as a result of a terminal illness, would she prefer that her son and

daughter-in-law save their hard-earned income for the college expenses for their own

children or spend it on extending her life. These are not easy questions to face yet face

them we must. The costs continue to rise, the percentage of Americans working to pay

them continues to decline and we’re all getting older.

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Conclusion

2.6 Economic issues such as lack of incentives, fairness issue, efficiency of expenditures

The use of advance planning and living wills has the ability to greatly alter the

way we in America deal with death and dying in our elderly population. Reducing the

costs associated with this final stage of our life is just one of the benefits, and one that

may allow our existing system to operate without huge infusions of new cash. Without

this and other changes, we simply won't have the financial resources in place to support

our existing Medicare + Medicaid systems as they incorporate the large numbers of Baby

Boomers.

While I may choose to limit the number and types of aggressive medical treatments

that I receive during my end-of-life care, my spouse may feel differently and request the

most aggressive types of care regardless of whether they’ll have a positive impact on the

quantity or quality of his life. In my case, there will probably be a positive result on the

cost of my end-of-life care to the American workers. In my husband’s case, it could still

result in the million dollar, in 2009 dollars, expenditures described in Helga Wanglie’s

treatments.

In the Pew research survey, fewer than 44% of Americans say they would ask to

end care if they had an illness that made them totally dependent on another person for all

of their care. Another 38% responded that they would want the most ‘aggressive’ care

provided and everything done to save them. The numbers are a close: 42%, please halt

treatment. 43%, don’t halt treatment. There’s actually been a small increase reported,

since 1991, in the percentage who say they want everything done medically under these

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scenarios which doesn’t bode at all well for the oncoming Medicare challenges.28 p. 6

The U.S. federal Patient Self Determination Act (PSDA) includes in part (A)(i)

“an individual’s rights under State law (whether statutory or as recognized by the courts

of the State) to make decisions concerning such medical care, including the right to

accept or refuse medical or surgical treatment and right to formulate advance directives

(as defined in paragraph (3)), and (ii) the written policies of the provider or organization

respecting the implementation of such rights.” The existing problem with this very good

statute is that it is presented to adults when admitted to a hospital, skilled nursing facility

or hospice program or when under the care of a home health agency. Once again; too

little, too late. By this time in an adult’s life-cycle-ending point they may not be able,

willing or even conscious to make such types of decisions. The second major problem is

that it is completely voluntary so no one is currently required to have made such

provisions for themselves should they become faced with the need. My thesis advocates

requiring all American’s who accept Medicare benefits to have a legal Advance Health

Care Directive in place. The transaction itself must occur by the time they turn sixty-five

years of age and become eligible for the program and not when they are elderly, ill, frail,

incapacitated in a multitude of ways and reliant on others to make their decisions for

them.

Using Advance Health Care Directives can prevent a person’s final health care

decisions from being made by a court appointed guardian. Instead, they will be based on

your values, spiritual beliefs, wishes for a lasting contribution to the future of your

28 Pew Research Center for The People & The Press. (2006). More Americans Discussing – and Planning – End-of-Life Treatment STRONG PUBLIC SUPPORT FOR RIGHT TO DIE. http://www.pewtrusts.org/news_room_detail.aspx?id=23572

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society and country. They are not permanent and can be removed completely or changed

with just the words being spoken from your mouth. “If near death and struggling to

breath, the patient suddenly was to gasp, “Save me! Save me! Don’t let me go!” the

directive would have to be disregarded and heroic life-sustaining measure (e.g., a

ventilator) started.” P. 629 Due to the lack of a federal Advance Health Care Directive,

and relying totally on the fifty state-issued or attorney drafted versions, we are not using

the Advance Health Care Directives to full advantage. Yet if we are able to reduce the

proportion of the people currently using the thirty to thirty five percent of all Medicare

expenditures in that last year of their life by half to just 2.5%, then they will only be

spending five times the amount the other 97.5% of the Medicare population claims. The

ethics of advance health directives are a whole other paper but a small component that

bears referencing here is the question of whether a level of care either so remarkably

extraordinary or so patently future as to compromise scarce societal resources, thereby

diminishing the just level of care that might be afforded to others.” Scarcity versus

abundance, unlimited amounts of capital versus finite amounts of money continue to be

the basis of the oncoming crisis.

Each of the fifty states has some form of the Advance Health Care Directive. I

have included the Illinois version of both the directive and a living will, signed and sealed

by me, in this paper. They are legal and binding across state lines but not in other

countries. And the directives, if not enforced, don’t provide much remedy to the dying

patient. There is some irony in the fact that, to date, Advance Health Care Directives are

not viewed as a constitutional issue at the federal level in spite of the small detail that it is

29 Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook for Professionals. Chicago: American Bar Association.

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a federal program, Medicare, that pays for all the health care services provided to the

dying people.

The Pew Research Center conducted a survey in 2005 among 1,500 adults, and

found that while overall attitudes among Americans are largely stable, people are more

actively thinking about and planning for their own medical treatment in the event of a

terminal illness or incapacitating medical condition. The aging of the population could be

the cause of this increased planning process. Public awareness of living wills, already

widespread in 1990, is now virtually universal. The good news is the number saying they

have a living will has more than doubled – from just 12% in 1990 to 29% today.30 p. 1

The bad news is that means approximately 71% of Americans do not have living wills

today.

The process of drafting an Advance Health Care Directive, a living will or any

other legal instrument is not intended to be fun. It probably will not be anticipated with

glee by many Americans faced with doing it, for mandatory or elective reasons. Some

people may experience the pain that reliving past experiences with deceased relatives

may bring up for them. Others may fear illness and death and this process forces them to

face this fear head on and still finish their legal document. Still others hold the process of

death itself to be a part of their religious faith and do not believe it either their

responsibility or option to address. There are those of us who sometimes believe that if

we ignore something, it will not come to pass, but death is yet another one of those things

that ignoring doesn’t seem to have any affect on. Whether we want to do this or not, it

30 Pew Research Center for The People & The Press. (2006). More Americans Discussing – and Planning – End-of-Life Treatment STRONG PUBLIC SUPPORT FOR RIGHT TO DIE. http://www.pewtrusts.org/news_room_detail.aspx?id=23572

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doesn’t change the economic crisis rapidly approaching us.

Another important, non-economic result of this change may be to teach Americans

that dying is a natural part of our life cycle and that it may not always be bad. Death with

comfort, palliative care and dignity may be the way some of us choose to end our lives,

not as recipients of lengthy, painful, frightening and non-curative medical care at

unsustainable expense to our national healthcare system for the elderly.

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Bibliography

Aaron, H., Lambrew, J. (2008). Reforming Medicare: options, tradeoffs, opportunities. Washington, D.C.: Brookings Institution Press. Aaron, H., Schwartz, W., Cox, M. (2005). Can We Say No? The Challenge of Rationing Health Care. Washington, D.C.: Brookings Institution Press.

Battin, M., Francis, L., Landesman, B., (2007). Death, Dying and the Ending of Life, Volume II. Hampshire, England: Ashgate Publishing Company.

Barnes, J. (2008). Nothing To Be Frightened Of. New York: Alfred A. Knopf.

Sandra Beckwith. Journal of Palliative Medicine. Winter 1999, 2(4): 377-381. doi:10.1089/jpm.1999.2.377.

Blank, R., Merrick, J. (2005), End-of-life decision making: a cross-national study. Massachusets: MIT Press.

Drane, J., (2003), More Humane Medicine: A Liberal Catholic Bioethics. Pennsylvania: Edinboro University Press.

Gillick, M. (2006). The Denial of Aging. Cambridge: Harvard University Press.

Gillick, M. (1994). Choosing Medical Care in Old Age: What Kind, How Much, When to Stop. Cambridge: Harvard University Press.

Hillyard, D. (2001). Dying right: the death with dignity movement. New York: Routledge

Krohm, M.D., C., Summers, S. (2002) Advance Health Care Directives: A Handbook for Professionals. Chicago: American Bar Association.

2008 ANNUAL REPORT OF THE BOARDS OF TRUSTEES OF THE FEDERAL HOSPITAL INSURANCE AND FEDERAL SUPPLEMENTARY MEDICAL INSURANCE TRUST FUNDS www.cms.hhs.gov/reportstrustfunds/downloads/tr2008.pdf

STATEMENT OF ILLINOIS LAW ON ADVANCE HEALTH CARE DIRECTIVES AND DNR ORDERS http://www.idph.state.il.us/public/books/advin.htm

Compassion & Choices Launches Nation's Only Patient-Centered Care Web SiteMain Category: Palliative Care / Hospice Care

The Medicare Modernization Act of 2003 Centers for Medicare and Medicaid Services funding demonstration programs for chronically ill patients. Disease management

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programs for Medicare beneficiaries with congestive heart failure, diabetes and chronic obstructive pulmonary disease.

LONG-TERM FISCAL OUTLOOK Long-Term Federal Fiscal Challenge Driven Primarily by Health Care Statement of Gene L. Dodaro, Acting Comptroller General of the United States,Testimony Before the Committee on Finance, U.S. SenateUnited States Government Accountability Office, June 17, 2008

The Patient Self Determination Act 42 USCA Section 1395cc

Pew Research Center for The People & The Press. (2006). More Americans Discussing – and Planning – End-of-Life Treatment STRONG PUBLIC SUPPORT FOR RIGHT TO DIE. http://www.pewtrusts.org/news_room_detail.aspx?id=23572

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STATEMENT OF ILLINOIS LAWON ADVANCE HEALTH CARE DIRECTIVES AND DNR ORDERS

You have the right to make decisions about the health care you get now and in the future. An advance directive is a written statement you prepare about how you want your medical decisions to be made in the future, if you are no longer able to make them for yourself. A do not resuscitate order (DNR order) is a medical treatment order that says cardiopulmonary resuscitation (CPR) will not be used if your heart and/or breathing stops.

Federal law requires that you be told of your right to make an advance directive when you are admitted to a health-care facility. Illinois law allows for the following three types of advance directives: (1) health care power of attorney; (2) living will; and (3) mental health treatment preference declaration. In addition, you can ask your physician to work with you to prepare a DNR order. You may choose to discuss with your health-care professional and/or attorney these different types of Advance Health Care Directives as well as a DNR order. After reviewing information regarding Advance Health Care Directives and a DNR order, you may decide to make more than one. For example, you could make a health care power of attorney and a living will.

If you have one or more Advance Health Care Directives and/or a DNR order, tell your health-care professional and provide them with a copy. You may also want to provide a copy to family members, and you should provide a copy to those you appoint to make these decisions for you.

State law provides copies of sample Advance Health Care Directives forms. In addition, this webpage provides a copy of these forms and a copy of the Illinois Department of Public Health (IDPH) Uniform Do Not Resuscitate (DNR) Advance Directive.

Health Care Power of Attorney

The health care power of attorney lets you choose someone to make health-care decisions for you in the future, if you are no longer able to make these decisions for yourself. You are called the "principal" in the power of attorney form and the person you choose to make decisions is called your "agent." Your agent would make health-care decisions for you if you were no longer able to makes these decisions for yourself. So long as you are able to make these decisions, you will have the power to do so. You may use a standard health care power of attorney form or write your own. You may give your agent specific directions about the health care you do or do not want.

The agent you choose cannot be your health-care professional or other health-care provider. You should have someone who is not your agent witness your signing of the power of attorney.

The power of your agent to make health-care decisions on your behalf is broad. Your

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agent would be required to follow any specific instructions you give regarding care you want provided or withheld. For example, you can say whether you want all life-sustaining treatments provided in all events; whether and when you want life-sustaining treatment ended; instructions regarding refusal of certain types of treatments on religious or other personal grounds; and instructions regarding anatomical gifts and disposal of remains. Unless you include time limits, the health care power of attorney will continue in effect from the time it is signed until your death. You can cancel your power of attorney at any time, either by telling someone or by canceling it in writing. You can name a backup agent to act if the first one cannot or will not take action. If you want to change your power of attorney, you must do so in writing.

Living Will

A living will tells your health-care professional whether you want death-delaying procedures used if you have a terminal condition and are unable to state your wishes. A living will, unlike a health care power of attorney, only applies if you have a terminal condition. A terminal condition means an incurable and irreversible condition such that death is imminent and the application of any death delaying procedures serves only to prolong the dying process.

Even if you sign a living will, food and water cannot be withdrawn if it would be the only cause of death. Also, if you are pregnant and your health-care professional thinks you could have a live birth, your living will cannot go into effect.

You can use a standard living will form or write your own. You may write specific directions about the death-delaying procedures you do or do not want.

Two people must witness your signing of the living will. Your health-care professional cannot be a witness. It is your responsibility to tell your health-care professional if you have a living will if you are able to do so. You can cancel your living will at any time, either by telling someone or by canceling it in writing.

If you have both a health care power of attorney and a living will, the agent you name in your power of attorney will make your health-care decisions unless he or she is unavailable.

Mental Health Treatment Preference Declaration

A mental health treatment preference declaration lets you say if you want to receive electroconvulsive treatment (ECT) or psychotropic medicine when you have a mental illness and are unable to make these decisions for yourself. It also allows you to say whether you wish to be admitted to a mental health facility for up to 17 days of treatment.

You can write your wishes and/or choose someone to make your mental health decisions

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for you. In the declaration, you are called the "principal" and the person you choose is called an "attorney-in-fact." Neither your health-care professional nor any employee of a health-care facility in which you reside may be your attorney-in-fact. Your attorney-in-fact must accept the appointment in writing before he or she can start making decisions regarding your mental health treatment. The attorney-in-fact must make decisions consistent with any desires you express in your declaration unless a court orders differently or an emergency threatens your life or health.

Your mental health treatment preference declaration expires three years from the date you sign it. Two people must witness you signing the declaration. The following people may not witness your signing of the declaration: your health-care professional; an employee of a health-care facility in which you reside; or a family member related by blood, marriage or adoption. You may cancel your declaration in writing prior to its expiration as long as you are not receiving mental health treatment at the time of cancellation. If you are receiving mental health treatment, your declaration will not expire and you may not cancel it until the treatment is successfully completed.

Do-Not-Resuscitate Order

You may also ask your health-care professional about a do-not-resuscitate order (DNR order). A DNR order is a medical treatment order stating that cardiopulmonary resuscitation (CPR) will not be attempted if your heart and/or breathing stops. The law authorizing the development of the form specifies that an individual (or his or her authorized legal representative) may execute the IDPH Uniform DNR Advance Directive directing that resuscitation efforts shall not be attempted. Therefore, a DNR order completed on the IDPH Uniform DNR Advance Directive contains an advance directive made by an individual (or legal representative), and also contains a physician’s order that requires a physician’s signature.

Before a DNR order may be entered into your medical record, either you or another person (your legal guardian, health care power of attorney or surrogate decision maker) must consent to the DNR order. This consent must be witnessed by two people who are 18 years or older. If a DNR order is entered into your medical record, appropriate medical treatment other than CPR will be given to you. This webpage provides a copy of the Illinois Department of Public Health (IDPH) Uniform Do Not Resuscitate (DNR) Advance Directive that may be used by you and your physician. This webpage also provides a link to guidance for individuals, health-care professionals and health-care providers concerning the IDPH Uniform DNR Advance Directive.

What happens if you don't have an advance directive?

Under Illinois law, a health care "surrogate" may be chosen for you if you cannot make health-care decisions for yourself and do not have an advance directive. A health care surrogate will be one of the following persons (in order of priority): guardian of the

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person, spouse, any adult child(ren), either parent, any adult brother or sister, any adult grandchild(ren), a close friend, or guardian of the estate.

The surrogate can make all health-care decisions for you, with certain exceptions. A health care surrogate cannot tell your health-care professional to withdraw or withhold life-sustaining treatment unless you have a "qualifying condition," which is a terminal condition, permanent unconsciousness, or an incurable or irreversible condition. A "terminal condition" is an incurable or irreversible injury for which there is no reasonable prospect of cure or recovery, death is imminent and life-sustaining treatment will only prolong the dying process. "Permanent unconsciousness" means a condition that, to a high degree of medical certainty, will last permanently, without improvement; there is no thought, purposeful social interaction or sensory awareness present; and providing life-sustaining treatment will only have minimal medical benefit. An "incurable or irreversible condition" means an illness or injury for which there is no reasonable prospect for cure or recovery, that ultimately will cause the patient's death, that imposes severe pain or an inhumane burden on the patient, and for which life-sustaining treatment will have minimal medical benefit.

Two doctors must certify that you cannot make decisions and have a qualifying condition in order to withdraw or withhold life-sustaining treatment. If your health care surrogate decision maker decides to withdraw or withhold life-sustaining treatment, this decision must be witnessed by a person who is 18 years or older. A health care surrogate may consent to a DNR order, however, this consent must be witnessed by two individuals 18 years or older.

A health care surrogate, other than a court-appointed guardian, cannot consent to certain mental health treatments, including treatment by electroconvulsive therapy (ECT), psychotropic medication or admission to a mental health facility. A health care surrogate can petition a court to allow these mental health services.

Final Notes

You should talk with your family, your health-care professional, your attorney, and any agent or attorney-in-fact that you appoint about your decision to make one or more Advance Health Care Directives or a DNR order. If they know what health care you want, they will find it easier to follow your wishes. If you cancel or change an advance directive or a DNR order in the future, remember to tell these same people about the change or cancellation.No health-care facility, health-care professional or insurer can make you execute an advance directive or DNR Order as a condition of providing treatment or insurance. It is entirely your decision. If a health-care facility, health-care professional or insurer objects to following your advance directive or DNR order then they must tell you or the individual responsible for making your health-care decisions. They must continue to provide care until you or your decision maker can transfer you to another health-care provider who will follow your advance directive or DNR order.

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Last updated June 27, 2006

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Living Will�DECLARATION

This declaration is made this __________ day of_____________________________(month, year).

I, ___________________________________________________, being of sound mind, willfully and voluntarily make known my desires that my moment of death shall not be artificially postponed.

If at any time I should have an incurable and irreversible injury, disease, or illness judged to be a terminal condition by my attending physician who has personally examined me and has determined that my death is imminent except for death delaying procedures, I direct that such procedures which would only prolong the dying process be withheld or withdrawn, and that I be permitted to die naturally with only the administration of medication, sustenance, or the performance of any medical procedure deemed necessary by my attending physician to provide me with comfort care.

In the absence of my ability to give directions regarding the use of such death delaying procedures, it is my intention that this declaration shall be honored by my family and physician as the final expression of my legal right to refuse medical or surgical treatment and accept the consequences from such refusal.

Signed________________________________________________________________________

City, County and State of Residence ___________________________________________________________________

The declarant is personally known to me and I believe him or her to be of sound mind. I saw the declarant sign the declaration in my presence (or the declarant acknowledged in my presence that he or she had signed the declaration) and I signed the declaration as a witness in the presence of the declarant. I did not sign the declarant’s signature above for or at the direction of the declarant. At the date of this instrument, I am not entitled to any portion of the estate of the declarant according to the laws of intestate succession or, to the best of my knowledge and belief, under any will of declarant or other instrument taking effect at declarant’s death, or directly financially responsible for declarant’s medical care.

Witness________________________________________________________________________

Witness________________________________________________________________________

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Power of Attorney for Health Care�

Illinois Statutory Short Form(NOTICE: the purpose of this power of attorney is to give the person you designate (your “agent”) broad powers to make health care decisions for you, including power to require, consent to or withdraw any type of personal care or medical treatment for any physical or mental condition and to admit you to or discharge you from any hospital, home or other institution. This form does not impose a duty on your agent to exercise granted powers; but when powers are exercised, your agent will have to use due care to act for your benefit and in accordance with this form and keep a record of receipts, disbursements and significant actions taken as agent. A court can take away powers of your agent if it finds the agent is not acting properly. You may name successor agents under this form but not co-agents, and no health care provider may be named. Unless you expressly limit the uration of this power in the manner provided below, until you revoke this power or a court acting on your behalf terminates it, your agent may exercise the powers given here throughout your lifetime, even after you become disabled. The powers you give your agent, your right to revoke those powers and the penalties for violating the law are explained more fully in sections 4-5, 4-6, 4-9 and 4-10(b) of the Illinois “Powers of Attorney for Health Care Law” of which this form is a part. That law expressly permits the use of any different form of power of attorney you may desire. If there is anything about this form that you do not understand, you should ask a lawyer to explain it to you.)

POWER OF ATTORNEY made this __________ day of___________________________(month, year).

1. I,__________________________________________________________________________ (insert name and address of principal)

hereby appoint:_________________________________________________________________ (insert name and address of agent)

as my attorney-in-fact (my “agent”) to act for me and in my name (in any way I could act in person) to make any and all decisions for me concerning my personal care, medical treatment, hospitalization and health care and to require, withhold or withdraw any type of medical treatment or procedure, even though my death may ensue. My agent shall have the same access to my medical records that I have, including the right to disclose the contents to others. My agent shall also have full power to authorize an autopsy and direct the disposition of my remains. Effective upon my death, my agent has the full power to make an anatomical gift of the following (initial one):

Any organ: Specific organs:

(The above grant of power is intended to be as broad as possible so that your agent will have authority to make any decision you could make to obtain or terminate any type of health care,

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including withdrawal of food and water and other life-sustaining measures, if your agent believes such action would be consistent with your intent and desires. If you wish to limit the scope of your agent’s powers or prescribe special rules or limit the power to make an anatomical gift, authorize autopsy or dispose of remains, you may do so in the following paragraphs.)

2. The powers granted above shall not include the following powers or shall be subject to the following rules or limitations (here you may include any specific limitations you deem appropriate, such as: your own definition of when life-sustaining measures should be withheld; a direction to continue food and fluids or life-sustaining treatment in all events; or instructions to

refuse any Illinois Statutory Short Form Power of Attorney for Health Care Page 2

specific types of treatment that are inconsistent with your religious beliefs or unacceptable to you for any other reason, such as blood transfusion, electro-convulsive therapy, amputation, psychosurgery, voluntary admission to a mental institution, etc.):

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

(The subject of life-sustaining treatment is of particular importance. For your convenience in dealing with that subject, some general statements concerning the withholding or removal of life-sustaining treatment are set forth below. If you agree with one of these statements, you may initial that statement; but do not initial more than one):

_____ I do not want my life to be prolonged nor do I want life-sustaining treatment to be provided or continued if my agent believes the burdens of the treatment outweigh the expected benefits. I want my agent to consider the relief of suffering, the expense involved and the quality as well as the possible extension of my life in making decisions concerning life-sustaining treatment.

_____ I want my life to be prolonged and I want life-sustaining treatment to be provided or continued unless I am in a coma which my attending physician believes to be irreversible, in accordance with reasonable medical standards at the time of reference. If and when I have suffered irreversible coma,

_____ I want life-sustaining treatment to be withheld or discontinued. I want my life to be prolonged to the greatest extent possible without regard to my condition, the chances I have for recovery or the cost of the procedures.

(This power of attorney may be amended or revoked by you in the manner provided in section 4-6 of the Illinois “powers of attorney for health care law” (see the back of this form). Absent amendment or revocation, the authority granted in this power of attorney will become effective at the time this power is signed and will continue until your death, and beyond if anatomical gift, autopsy or disposition of remains is authorized, unless a limitation on the beginning date or duration is made by initialing and completing either or both of the following:)

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Initialed

Initialed

Initialed

3.( ) This power of attorney shall become effective on____________________________________ (insert a future date or event during your lifetime, such as court determination of your disability, when you want this power to first take effect)

4.( ) This power of attorney shall terminate on__________________________________________ ______________________________________________________________________________ (insert a future date or event, such as court determination of your disability, when you want this power to terminate prior to your death)

(If you wish to name successor agents, insert the names and addresses of such successors in the following paragraph.) 5. If any agent named by me shall die, become incompetent, resign, refuse to accept the office of agent or be unavailable, I name the following (each to act alone and successively, in the order named) as successors to such agent: ______________________________________________________________________________ ______________________________________________________________________________ (continued) Illinois Statutory Short Form Power of Attorney for Health Care Page 3

For purposes of this paragraph 5, a person shall be considered to be incompetent if and while the person is a minor or an adjudicated incompetent or disabled person or the person is unable to give prompt and intelligent consideration to health care matters, as certified by a licensed physician.

(If you wish to name your agent as guardian of your person, in the event a court decides that one should be appointed, you may, but are not required to, do so by retaining the following paragraph. The court will appoint your agent if the court finds that such appointment will serve your best interests and welfare. Strike out paragraph 6 if you do not want your agent to act as guardian.)

6. If a guardian of my person is to be appointed, I nominate the agent acting under this power of attorney as such guardian, to serve without bond or security.

7. I am fully informed as to all the contents of this form and understand the full import of this grant of powers to my agent.

Signed________________________________________________________________________ (principal)

The principal has had an opportunity to read the above form and has signed the form or acknowledged his or her signature or mark on the form in my presence.

____________________________Residing at_________________________________________ (witness)

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(You may, but are not required to, request your agent and successor agents to provide specimen signatures below. If you include specimen signatures in this power of attorney, you must complete the certification opposite the signatures of the agents.)

Specimen signatures of agent (and successors) I certify that the signatures of my agent (and successors) are correct.

________________________________ ________________________________________ (agent) (principal)

________________________________ ________________________________________ (successor agent) (principal)

________________________________ ________________________________________ (successor agent) (principal)

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Online Publications

ILLINOIS DEPARTMENT OF PUBLIC HEALTH (IDPH)UNIFORM DO-NOT-RESUSCITATE (DNR) ADVANCE DIRECTIVEGuidance for Individuals

The Illinois Department of Public Health (IDPH) Uniform Do-Not-Resuscitate (DNR) Advance Directive can be used to create a physician order that reflects an individual’s wishes about receiving cardiopulmonary resuscitation (CPR). The form allows you, in consultation with your health-care professional, to make advance decisions about whether CPR should be administered if your breathing and/or heartbeat stop. CPR, when successful, restores heartbeat and breathing. The completed form is intended to be honored across various settings, including hospitals, nursing homes, and by emergency medical services personnel in your residence or en route to a health-care facility. You should use the IDPH Uniform DNR Advance Directive to replace the previous orange-colored Emergency Medical Services DNR form.

You should complete the IDPH Uniform DNR Advance Directive only after extensive discussion about treatment preferences with your immediate family members and your health-care professional. Items for discussion with your health-care professional should include your preferences regarding administration of CPR if your heartbeat and/or breathing stop, in view of the following:

* Your personal views * Your medical condition and related medical considerations * Your views regarding use of CPR in the event of an unforeseen accident (such as a car crash

or choking on food) * Quality of life issues before and after CPR * Your views regarding use of CPR during surgery or other medical procedure * Your wishes regarding organ donation * Your views regarding use of a mechanical ventilator

You are not required to consent to a DNR order as a condition of treatment or care. If you become unable to make decisions for yourself, a decision regarding whether you should have a DNR order can be made by your legal representative and your physician.

I. General Considerations

What is a Do-Not-Resuscitate (DNR) order?A Do-Not-Resuscitate (DNR) order is a medical treatment order that says cardiopulmonary resuscitation (CPR) will not be attempted if your heart and/or breathing stops.

What is cardiopulmonary resuscitation (CPR)?CPR refers to various medical procedures, such as chest compressions, electrical shocks and insertion of a breathing tube, used in an attempt to restart your heart and/or breathing.

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Why are DNR orders issued?

Health-care professionals ordinarily will begin CPR when your heart and/or breathing stop. You may make a choice, however, not to receive CPR under these circumstances. A DNR order states you prefer to be cared for without CPR in the event your heart and/or breathing stops.

Who may have a DNR order?An adult or an emancipated minor who does not wish to have CPR attempted when his or her heart and/or breathing stops may have a DNR order. The parent or legal guardian of a minor also may request a DNR order for the minor.

Is there a form my physician can use to enter a DNR order?

The Illinois Department of Public Health (IDPH) has developed the “IDPH Uniform Do-Not-Resuscitate (DNR) Advance Directive” that your physician can use. A DNR order completed on this form should be honored by health-care professionals and providers in health-care facilities, as well as by EMTs and paramedics in your home or en route to a health-care facility. To obtain a copy of the IDPH Uniform DNR Advance Directive, you may request one from your health-care professional or facility. Copies also are available on the Illinois Department of Public Health’s Web site located at www.idph.state.il.us/public/books/advin.htm. Health-care facilities also may have their own form, but this guidance addresses only the IDPH Uniform DNR Advance Directive.

Where may a DNR order be used?A DNR order may be used by all health-care professionals and providers. If you choose to use the IDPH Uniform DNR Advance Directive, it is required by law to be honored in licensed hospitals, in certain licensed long-term care facilities such as nursing homes, and by licensed emergency medical services personnel.

II. Completing and Reviewing the IDPH Uniform DNR Advance Directive

On the IDPH Uniform DNR Advance Directive, what is meant by “full cardiopulmonary arrest”? Full cardiopulmonary arrest means both your heart and breathing have stopped.

On the IDPH Uniform DNR Advance Directive, what is meant by “pre-arrest emergency”?Pre-arrest emergency means your breathing is labored or stopped, but your heart is still beating. If CPR is not initiated, full cardiopulmonary arrest may follow a pre-arrest emergency.

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The IDPH Uniform DNR Advance Directive identifies two options you may select in the event of a “pre-arrest emergency.” What is the difference between the two options?

The first option is “ Do Attempt Resuscitation,” which means CPR will be attempted if your breathing is labored or stopped.

The second option is “ Do Not Attempt Resuscitation.” This option says you do not want CPR attempted if your breathing has become labored or stopped, but your heart is still beating. The care provided in this category is intended to keep you comfortable and promote your dignity during the emergency, rather than to prolong your life.

If I want all resuscitation efforts under all circumstances, do I still have to complete the IDPH Uniform DNR Advance Directive?No. If you do not have a completed DNR order, CPR should be attempted if your heartbeat and/or breathing stop.

If I do not have a completed DNR order, what will happen if I suffer some type of cardiopulmonary arrest?Again, CPR should be attempted in the event your heart and/or breathing stop.

Who may provide the consent required on the IDPH Uniform DNR Advance Directive?

Generally, consent may be obtained from you or another person legally authorized to act on your behalf. If you are unable to make your own health-care decisions, a legal guardian, a health-care agent under a health-care power of attorney or a health-care surrogate may consent on your behalf to the DNR order. A parent or legal guardian typically may grant the required consent for a minor, and emancipated minors also may consent to a DNR order.

Does the IDPH Uniform DNR Advance Directive require the signature of the person who is consenting to the DNR order?

Yes. You or your legal representative, health-care agent or health-care surrogate must sign the section of the form concerning consent.

Are witnesses required for the IDPH Uniform DNR Advance Directive?

Yes. Two individuals, 18 years of age or older, must witness your signature or your legal representative’s signature granting consent on the IDPH Uniform DNR Advance Directive. Witnesses may include family members, friends and health-care workers.

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III. Implementing a Completed IDPH Uniform DNR Advance Directive

Once I have a completed DNR order on an IDPH Uniform DNR Advance Directive, what medical care will be given to me?

When the DNR order is entered into your medical record, you will continue to receive appropriate medical care. However, if your heartbeat and/or breathing stops, appropriate medical treatment will only be given to you according to your wishes as expressed in the IDPH Uniform DNR Advance Directive.

Does the cause of the cardiopulmonary arrest matter when invoking my DNR order?Generally, no. The order generally applies when your heartbeat and/or breathing stop, regardless of what caused the cardiopulmonary arrest. For example, if you go into cardiopulmonary arrest from an accident, and you have a DNR order, your wishes as stated in the order likely will be followed to the extent the order is readily available to the health-care provider.

A DNR order may not be appropriate for you, should you want CPR administered if your heartbeat and/or breathing stop as a result of an accident or during a medical procedure such as surgery. Therefore, it is very important to discuss your wishes with your health-care professional prior to consenting to a DNR order. You and your health care professional might want to consider placing your wishes regarding application of the order in the event of an accident or medical procedure in the portion of the form designated for other instructions.

What if I change my mind about having a DNR order?

You (or your legal representative on your behalf) can change your mind at any time about having a DNR order. The DNR order can be revoked in a variety of ways, such as by writing “VOID” in large letters across the front of the form. If you revoke a DNR order, you also should tell your family members, as well as each health-care professional and provider that has received a copy of the order. You may then choose not to have a DNR order, or you may choose to complete a new DNR order reflecting any changes you wish.

Does my completed DNR order have an expiration date?No. The order is valid until you revoke it. If you are unable to revoke it, your legal representative may do so.

Must all health-care providers honor my DNR order?Licensed hospitals, certain licensed long-term care facilities such as nursing homes, and licensed emergency medical services personnel are required by law to honor a DNR order completed on the IDPH Uniform DNR Advance Directive.

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If an ambulance is called to take me to the hospital, should my DNR order be honored by licensed emergency medical services personnel?Yes, as long as someone provides emergency medical services personnel with a copy of your DNR order, and the order appears to be complete and valid. If a form other than the IDPH Uniform DNR Advance Directive is used, however, there may be barriers to honoring your DNR order.

If I am transferred from one facility to another, should my DNR order be sent with me?Your DNR order,or a copy of it, should accompany you to the next setting, whether it is a hospital, rehabilitation facility, nursing home or your own home.

Are photocopies of the IDPH Uniform DNR Advance Directive valid?Generally, yes. Photocopies of a completed IDPH Uniform DNR Advance Directive are valid. Each health-care facility, however, may have different policies on whether copies of DNR orders completed on a form other than an IDPH Uniform DNR Advance Directive are accepted as valid. It is advisable to check with a health-care facility regarding its DNR policy.

Who keeps the completed DNR order?You should keep the original DNR order with you where you reside, whether at home or on file in your medical record at a long-term care facility and your physician should keep a copy in your medical record. A copy also should be with you if you are transported to a hospital or other health-care facility. If you have a legal guardian, have named an agent under a power of attorney for health-care or have a surrogate (substitute) decision maker, he or she also should have a copy of the order readily accessible.

Are DNR orders ever suspended during surgery or other medical procedures?

Certain health-care providers in Illinois have written policies indicating that a DNR order may be suspended during a surgical procedure after discussion with you or your legal representative.

Further, your wishes regarding applicability of a DNR order during surgery, or in the event of an unforeseen accident (e.g. a car crash or choking on food), may be placed on the form in the space designated for “other instructions”.

What other documents might I consider signing to direct my care when I am no longer able to make health-care decisions for myself?

You may choose to make your wishes known by appointing an agent through a power of attorney for health-care or by executing a living will. Read the “Statement of Illinois Law on Advance Directives” for further information regarding the various Advance Health Care Directives available in Illinois. The statement is located on the Illinois Department of Public Health’s Web site at www.idph.state.il.us/public/books/advin.htm. You also can obtain at this Web site the following forms: IDPH Uniform DNR Advance Directive, Health Care Power of Attorney, Living Will and Mental Health Treatment Preference Declaration.

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IV. Other Resource Links directly to the governing provisions of law in the:

Nursing Home Care ActEmergency Medical Services ( EMS) Systems ActHospital Licensing ActIllinois Living Will ActHealth Care Surrogate ActMental Health Treatment Preference Declaration ActIllinois Power of Attorney Act

Last updated June 27, 2006idph online homenursing homes in illinois

Illinois Department of Public Health535 West Jefferson StreetSpringfield, Illinois 62761Phone 217-782-4977Fax 217-782-3987TTY 800-547-0466Questions or Comments

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