Tool Kit

Tool Kit

Tool Kit

For

Health Care Advance Planning

Introduction

If you are looking at this Tool Kit, you are either thinking of making a health care advance directive (such as a Living Will or Durable Power of Attorney for Health Care), or you may have already signed one. In either case, you should be aware that just having a written advance directive by itself does not ensure that your wishes will be understood and respected. Studies have shown that standard advance directive forms do little to influence end-of-life decisions without: 1) informed, thoughtful reflection about your wishes and values, and 2) personal communication between you and your likely decision-makers before a crisis occurs.

Why a Tool Kit?

Good advance planning for health care decisions is a continuing conversation - about values, priorities, the meaning of one's life, and quality of life. To help you in this process, this Tool Kit contains a variety of self-help worksheets, suggestions, and resources. There are 10 Tools in all, each clearly labeled and user-friendly.

Commission on Legal Problems of the Elderly

American Bar Association

740 Fifteenth Street, N.W., Washington, D.C. 20005

Ph: 202-662-8690 Internet: www.abanet.org/elderly

Tool #1

How to Select

Your Health Care Agent or Proxy

Name & Date_______________________________________

When you decide to pick someone to speak for you in a medical crisis, in case you are not able to speak for yourself, there are several things to think about. This tool will help you decide who the best person is. Usually it is best to name one person or agent to serve at a time, with at least one successor, or back-up person, in case the first person is not available when needed.

Compare up to 3 people with this tool. The persons best suited to be your Health Care Agents or Proxies rate well on these qualifications...

The person you choose to make health care decisions for you is known by different names in different states. This person is sometimes called a health care agent, proxy, representative, attorney-in-fact, surrogate, or even patient advocate.

State rules for who may be a health care proxy vary, but the most common groups disqualified are these:

Anyone under age 18.

Your health care provider, including the owner or operator of a health or residential or community care facility serving you -- unless this person is your spouse or close relative.

An employee of your health care provider -- unless this person is your spouse or close relative.

Talk to your proxy about the qualifications on the first page of this worksheet.

Ask permission to name him or her as your proxy.

Discuss your health care wishes and values and fears.

Make sure your proxy gets an original copy of your advance directive.

Tell family members and close friends who you picked.

___________________________

This worksheet adapted by the American Bar Association's Commission on Legal Problems of the Elderly from

R. Pearlman, et. al., Your Life Your Choices - Planning for Future Medical Decisions:

How to Prepare a Personalized Living Will , Veterans Administration Medical Center, Seattle, Washington.

Tool #2

Are Some Conditions

Worse than Death?

Name & Date________________________________

This worksheet helps you to think about situations in which you would not want medical treatments intended to keep you alive. These days, many treatments can keep people alive even if there is no chance that the treatment will reverse or improve their condition. Ask yourself what you would want in the situations described below if the treatment would not reverse or improve your condition.

Directions: Circle the number from 1 to 5 that best indicates the strength and direction of your desire. If you wish, you can add additional thoughts on the Comment lines.

-- Definitely want treatments that might keep you alive.

-- Probably would want treatments that might keep you alive.

-- Unsure of what you want.

-- Probably would NOT want treatments that might keep you alive.

-- Definitely do NOT want treatments that might keep you alive.

This worksheet adapted by the American Bar Association's Commission on Legal Problems of the Elderly from

R. Pearlman, et. al., Your Life Your Choices - Planning for Future Medical Decisions:

How to Prepare a Personalized Living Will, Veterans Administration Medical Center, Seattle, Washington.

Tool #3

How Do You Weigh

Odds of Survival?

Name & Date________________________________

People evaluate the pros and cons of medical treatments in very personal ways. This explains why some people choose a treatment and others reject it. A big question is, how much would you be willing to endure if the chance of regaining your current health was high? What if the chance was low? Answer the questions below to assess your willingness to take such risks.

Imagine that you are seriously ill. The doctors are recommending treatment for your illness, but the treatments have very

severe side effects, such as severe pain, nausea, vomiting, or weakness that could last for months.

Question: Would you be willing to endure such severe side effects if the chance that you would regain my current health was:

(Circle one answer for each)

High (over 80%) Yes Not sure No

Moderate (50%) Yes Not sure No

Low (20%) Yes Not sure No

Very low (less than 2%) Yes Not sure No

___________________________

This worksheet adapted by the American Bar Association's Commission on Legal Problems of the Elderly from

R. Pearlman, et. al., Your Life Your Choices - Planning for Future Medical Decisions:

How to Prepare a Personalized Living Will, Veterans Administration Medical Center, Seattle, Washington.

Tool #4

Personal Priorities & Spiritual Values

Important to Your Medical Decisions

Name & Date__________________________________

People have personal priorities and spiritual beliefs that effect their medical decisions. This is especially true at the end of life with regard to the use of life-sustaining treatments. To make your values and beliefs more clear, consider answering the questions below. Use more paper if you need more space.

6. Are there people to whom you want to write a letter or for whom you want to prepare a taped message,

perhaps marked for opening at a future time?

7. How do you want to be remembered? (If you wrote your own epitaph or obituary, what would it say?)

8. What are your wishes for a memorial service - for example, the songs or readings you want, or

the people you hope will participate?

This Worksheet adapted by the American Bar Association's Commission on Legal Problems of the Elderly from Caring Conversations, a workbook published by the Midwest Bioethics Center, 1021-1025 Jefferson Street, Kansas City, MO 64105

Tool #5

After Death Decisions

To Think About Now

Name & Date________________________________

After the death of a loved one, family and friends are often left with some tough decisions. You can help ease the pain and anxiety by making your wishes -- about burial, autopsy and organ donations -- clear in advance.

Do you want to donate viable ORGANS for transplant? (Circle one)

Yes If Yes, check one:

Not sure ____ I will donate any organs.

No ____ Just the following:

_________________________________________

Do you want to donate viable TISSUES for transplant? (Circle one)

Yes If Yes, check one:

Not sure ____ I will donate any tissue.

No ____ Just the following:

_____________________________________________

Attention! If you circled Yes for either of the above, be sure to write this into your health care Advance Directive. You may also fill out an organ donor card or register as an organ donor when you renew your driver's license. But be sure to tell your proxy and loved ones. Make sure they will support your wishes. Even with an organ donor card, hospitals will ask your proxy or family to sign a consent form.

If you do not donate organs or tissue, you may choose to donate your WHOLE BODY for medical research or education. Would you like to do this?

Yes Not sure No

If you circle Yes, you must contact a medical institution to which you are interested in making this donation. Medical schools, research facilities and other agencies need to study bodies to gain greater understanding of disease mechanisms in humans. But, this kind of donation must be accepted by the medical institution. Note that total body donation is not an option if you also choose to be an organ or tissue donor.

Would you agree to an autopsy? (Autopsies, done after death, are used for diagnostic and research purposes. The body can still be shown and buried.)

Yes Not sure No

I would prefer to be: (circle one)

Buried Cremated No Preference

I would like my remains to be placed:

What are your thoughts about your memorial service - such as songs or

readings you want, or the people you hope will participate?

Other preferences:

American Bar Association, Commission on Legal Problems of the Elderly

Washington, DC

Tool #6

Conversation Scripts:

Getting Past the Resistance

Communication is the single most important step in health care planning. Talk about your wishes with the people who may be called upon to speak or decide for you. Why?

No matter what your advance directive says, others will not fully understand your wishes. The more thoroughly you communicate, the easier it will be for everyone to respect your wishes.

It will help you think about what you want. Others will ask you questions or tell you things that will make you think about your wishes in another way.

It will help your loved ones make difficult decisions with less pain, doubt, and anxiety.

It may save money. Sometimes families continue medical treatments long past the point where they are helpful, simply because they are unsure what their loved one would have wanted. This is emotionally and financially costly… and unnecessary.

It may even bring your family closer together.

There's no “right” way to start. Nor is there a “right” time. Nor does the discussion necessarily have to be somber and mournful. Here are some suggestions for getting started:

Start with a story of someone else's experience:

“Do you remember what happened to so-and-so and what his family went through? I don't want you to have to go through that with me. That's why I want to talk about this now, while we can.”

“Neither Richard Nixon nor Jackie Kennedy was placed on life support. I wonder if they had Living Wills and made what they wanted clear in advance.”

Blame it on your attorney:

“Mr. Darrow, my lawyer, says that before I complete some legal documents, I need to talk over with you some plans about end-of-life medical care.”

Use the worksheets provided in this packet to guide the discussion. A variety of other workbooks are also available. (See Tool #10 - Resources: Advance Planning.)

Use a letter, tape, or video recording as a starting point. At first, it may be easier for people to hear what you have to say if you are not there. Afterwards they may be more ready to sit down and talk with you.

“Mom, I don't see what good it does to talk about such things. It's all in God's hands anyway.”

“Dad, I already know you don't want any heroic measures if things are really bad. There's nothing more we need to discuss about it. We'll do the right thing if the situation arises.”

“I just can't talk about this. It's too painful, and talking about it just makes it more likely that it will happen.”

Be firm and straightforward.

“I know this makes you feel uncomfortable, but I need you to listen, to hear what I have to say. It's very important to me.”

“Yes, death is in God's hands, but how we live until that moment is in our hands, and that's what I need to talk to you about.”

“If it is too overwhelming for you right now, I understand. But let's make an appointment for a specific time to sit down together to discuss this. All right?”

Point out the possible consequences of not talking now.

“If we don't talk about this now, we could both end up in a situation that is even more uncomfortable. I'd really like to avoid that if I could.”

Ask someone to be your spokesperson.

If you are able to connect well with one family member or friend, ask this person to initiate and lead the discussion with other family members or your doctor. This may make your job of explaining, clarifying, and answering questions easier.

This worksheet adapted by the American Bar Association's Commission on Legal Problems of the Elderly from

R. Pearlman, et. al., Your Life Your Choices - Planning for Future Medical Decisions: How to Prepare a Personalized Living Will , Veterans Administration Medical Center, Seattle, Washington.

Tool #7

“Proxy IQ Test”

For Family or Physician

How well does your family, proxy, or doctor know your health care wishes? This short test can give you some sense of how well you have communicated your wishes to them. Consider this a tool to promote better conversation and understanding.

The tests are on the following pages …

American Bar Association, Commission on Legal Problems of the Elderly

Washington, DC Proxy IQ Test

Step 1: Personal Medical Preferences

Complete this questionnaire by yourself.

Proxy IQ Test

Step 2: Proxy Understanding of Your Personal Medical Preferences

To be completed by your named health care proxy, family member, close friend or physician.

Instructions: Answer the following questions in the way you think “N” (name: ______________________) would answer.

- END -

Tool #8

What To Do After Signing

Your Health Care Advance Directive

Advance planning for health care is always a work in progress. That's because circumstances change, and lives change. One's values and priorities even change. As a sage remarked, “The world looks different when you're horizontal rather than vertical.”

Before each annual physical exam.

At the start of each decade of your life.

After any major life change - such as a birth in the family, marriage, divorce, re-marriage, and especially after the death of a loved one.

After any major medical change - such as being diagnosed with a serious disease or terminal illness. Or if such conditions worsen.

After losing your ability to live independently.

IF YOUR WISHES CHANGE…

Make a new advance directive if your old one no longer reflects your wishes. Ask about the proper way to cancel or amend your existing directive in your state. If you change your advance directive, it is important to notify everyone who has copies of your old medical directive forms.

Keep the original copy of your health care advance directive and these work sheets or other notes some place they can be easily found.

Give your chosen proxy a copy of the directive plus any worksheets or notes. Make sure your proxy knows where to find the original.

Give your doctor a copy of your directive. Make certain it is put in your medical record. Make sure your doctor will support your wishes. If your doctor has objections, you need to work them out or find another doctor.

Carry an advance directive wallet card with you.

If entering a hospital or nursing home, take a copy of your directive with you and ask that it be placed in your medical record.

Some organizations offer to register advance directives electronically and enable health care institutions to access them electronically. Some churches and synagogues keep advance directive on file for members. You may wish to consider such a service.

After completing your Advance Directive, you may have to take one more step if you want to avoid CPR (cardio-pulmonary resuscitation) or other life support when an ambulance (911) is called.

Some people with serious and irreversible conditions do not want an emergency medical team to give them CPR if their heart stops. If this is your wish, ask how to get a DNR Order (Do-Not-Resuscitate Order) that will be respected outside of hospitals. These are also called Out-of-Hospital DNR Orders, Comfort-Care-Only Orders, or by other similar names. They usually require your physician's signature and your consent. You will get a special identifying bracelet or document that must be visible if you have a medical crisis. If the emergency medical team sees the proper bracelet or document upon arrival, you can expect to receive all necessary comfort care -- but not life support

American Bar Association, Commission on Legal Problems of the Elderly

Washington, DC

Tool #9

Guide for Health Care Proxies

If you are in a position to make medical decisions for someone else, this guide is for you. If you have been named in someone's medical power of attorney or other advance directive, then you may be referred to as the person's proxy, agent, attorney-in-fact, surrogate, or representative. These are all essentially the same job. Even if you have not been named, you may be called upon to participate in medical decisions for close family or friends who are in a medical crisis and cannot speak for themselves.

Your duties depend on what the person's advance directive says and upon state law. You have to read the advance directive and ask about state law. You duties begin when the individual loses the ability to make health care decisions on his or her own.

In general, you will have authority to make any and all decisions a patient would make for him or herself, if able. This includes:

1. Receiving the same medical information the individual would receive.

2. Conferring with the medical team.

3. Reviewing the medical chart.

4. Asking questions and getting explanations.

5. Discussing treatment options.

6. Requesting consultations and second opinions.

7. Consenting to or refusing medical tests or treatments, including life-sustaining treatment.

8. Authorizing a transfer to another physician or institution, including another type of facility (such as a hospital or skilled nursing home).

The toughest decision may concern beginning or stopping life-sustaining treatments. In each life there may come a time when the patient's condition has deteriorated and it is clear that he or she will not get better. Family members or doctors may then question the value of life-sustaining treatments that seem to prolong the process of dying. Rather than thinking of this as depriving your loved one of necessary treatment, you may be protecting him or her from unnecessary pain and suffering. Many people say they do not want to die slowly, hooked up to machines or fed artificially through tubes. What does your loved one think? Use the steps on the next page to help you decide.

Steps for a Proxy to follow

Deciding for a loved one (whom we will call Mary)

1. Find out the medical facts. This requires talking to the doctors and getting a complete picture of the situation. Questions you can use:

What is the name of Mary's condition?

If you don't know exactly what's wrong, what are the possibilities?

Are tests needed to know more? Will the outcome of more testing make any difference in how you treat her, or in how she wants to be treated? (If not, why do the test?)

What is the purpose of each test? Do these tests have risks associated with them?

Is the information you need worth the risk of the test?

What is her condition doing to her now?

How do you explain her symptoms?

What usually happens with this disease?

What do you think now will be the likely course of this disease or condition?

How severe or advanced is her case?

2. Find out the options. Make sure the physician describes the risks and benefits of each option. You may want to ask:

How will this option make Mary improve or feel better?

What is the success rate statistically? What is success?

Can this procedure be done on a trial basis and then reevaluated? What is an appropriate amount of time for a trial? Are you willing to stop it after an agreed-upon trial?

What defines “success” for this option? (It may not be what Mary would consider a success.)

What will it mean to her quality of life?

If she is to die, how might it affect the circumstances of her death? (For example, will it likely require hospitalization instead of home care?)

What are the possible side effects?

What option do you recommend, and why?

3. Figure out how Mary would decide if she knew all the facts and options. You have three possible approaches to making the decision:

One - If you know preferences, follow them.

Two - If you do not know Mary's wishes for the specific decision at hand, but you have evidence of what she might want, you can try to figure out how she would decide. This is called substituted judgment, and it requires you imagining yourself in the patient's position. Consider her values, religious beliefs, past decisions, and past statements she has made. The aim is to choose as Mary would probably choose, even if it is not what you would choose for yourself.

Three - If you have very little or no knowledge of what Mary would want, then you and the doctors will have to make a decision based on what a reasonable person in the same situation would decide. This is called making decisions in the patient's best interest. Evaluate the benefits and burdens of the proposed treatment. For example, will the treatment cause Mary pain or suffering? Is it likely to make Mary better?

DO prepare in advance with the individual. Learn what is important to your loved one in making health care decisions. Do this before he or she loses the ability to decide. Talk about beliefs and values regarding living, and dying. Talk about spiritual beliefs.

DO make yourself and your role known to the medical staff. Make sure the advance directive is in the medical chart. Keep a copy yourself, handy, to show to people involved in the individual's medical care. Keep in touch with these people.

DO stay informed about the person's condition as it changes. Medical conditions change. Staff at the hospital change. Identify the person who can best keep you informed of the individual's condition. Stay involved and be flexible.

DO keep the family informed, if appropriate. You may have the legal authority to make medical decisions even if family members disagree. However most proxies are more comfortable if there is agreement among loved ones. Good communication can foster consensus. But you may also need help in resolving family disagreements. Ask for the facility's patient representative or ombudsman, social worker, clergy or spiritual advisor. Or ask for the ethics committee or ethics consultant.

DO advocate on the patient's behalf and assert yourself with the medical team, if necessary. Some medical people may not be as comfortable as others with your involvement. You may disagree with the doctor's recommendations. It is hard to disagree with medical professionals and institutional authorities. Be tactful and assertive. If their resistance becomes a problem, or if you feel you are not being heard, ask for help. Ask for help from the facility's patient representative or ombudsman, social worker, clergy or spiritual advisor, ethics committee or ethics consultant.

Adapted by the American Bar Association's Commission on Legal Problems of the Elderly from:

Making Health Care Decisions for Others: A Guide To Being A Health Care Proxy or Surrogate, by The Division of Bioethics, Montefiore Medical Center, Albert Einstein College of Medicine

Bronx, New York

Tool #10

Resources:

Advance Planning for Health Care

Here are some in-depth resources about end-of-life issues and advance medical directive forms.

Caring Conversations Workbook, published by the Midwest Bioethics Center, 1021-1025 Jefferson Street, Kansas City, MO 64105-1329 (Tel. 816-221-1100). This is both a workbook and advance directive. It can be downloaded for free from their web site: www.midbio.org. A comprehensive do-it-yourself workbook on planning for end-of-life care. (Parts of this Tool Kit were adapted from this publication.)

A Good Death: Challenges Choices and Care Options, by Charles Meyer (1998). Down-to-earth, lay-language explanation of the implications of end-of-life care decisions from a religious and spiritual perspective. A 64-page paperback available in many bookstores.

Handbook for Mortals: Guidance for People Facing Serious Illness, by Joanne Lynn, MD, and Joan Harrold, MD (NY: Oxford University Press, 1999), available through the web site of Americans for Better Care of the Dying www.abcd-caring.org. A most comprehensive and readable 242-page guide to dealing with serious, eventually fatal illness.

Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Measures Only and the Elderly Patient, by Hank Dunn . A&A Publishers, Inc. P.O. Box 1098, Herndon, VA 20172-1098 (Tel. 703-707-0169). Web site: www.hardchoices.com. A concise and helpful 48-page booklet on end-of-life decisions concerning resuscitation, food and fluids, hospitalization, and cure versus comfort care.

Making Health Care Decisions for Others: A Guide To Being A Health Care Proxy or Surrogate, by the Division of Bioethics, Dept. of Epidemiology and Social Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY. Available on their web site: www.montefiore.org/prof/clinical/desm/progserv/bioethics/index.html. A guide every proxy or agent needs to read. (Parts of this Tool Kit were adapted from this publication.)

Your Life Your Choices - Planning for Future Medical Decisions: How to Prepare a Personalized Living Will, by Robert Pearlman, et al. and the Veterans Administration Medical Center, Seattle, WA. A comprehensive do-it-yourself workbook on planning for end-of-life care. (Parts of this Tool Kit were adapted from this publication.) Order through the National Technical Information Service web site: www.ntis.gov.

Last Acts - a national communications campaign to improve care and caring at the end of life. The campaign supports initiatives to improve professional skills and institutional environments for care, and to increase public involvement. Last Acts can be reached through Partnerships for Caring (see below) or through their web page:

www.lastacts.org .

Partnership for Caring, Inc., 1035 30th Street, NW, Washington, D.C.20007-3823. (Tel.1-800-989-9455). Provides a wealth of educational material on end-of-life care, advance directives, and health care decisionmaking, including statespecific forms and instructions for completing them. Many of their materials can be downloaded from their web site www.partnershipforcaring.org .

Midwest Bioethics Center, 1021-1025 Jefferson St., Kansas City, MO 64105. (Tel. 816-221-1100). A non-profit ethics resource center dedicated to a health care delivery system anchored in respect for patients and their families and guided by ethical discourse. They publish the Caring Conversations Workbook, described above. Web page: www.midbio.org.

Americans for Better Care of the Dying, 2175 K Street, NW, Suite 820, Washington, DC 20037-1803 (Tel. 202-530-9864). ABCD is a non-profit public charity dedicated to social, professional, and policy reform aimed to improve the care system for patients with serious illness, and their families. Web page: www.abcd-caring.org .

Five Wishes Advance Directive. Published by Aging with Dignity. This nationally used and very popular advance directive focuses on ways of talking about health care wishes and needs. Can be purchased and downloaded from their web site: www.agingwithdignity.org. Also available by mail order from P.O. Box 11180, Tallahassee, FL 32302-3180.

Caring Conversations Workbook, published by the Midwest Bioethics Center. This is both a workbook and advance directive. See Guides and Handbooks above.

Shape Your Health Care Future with Health Care Advance Directives. Published jointly by the American Bar Association, the American Medical Association, and the American Association of Retired Persons. Available for free on the ABA web site at: www.abanet.org/elderly .

The Medical Directive, by Linda L. Emanuel, M.D., and Ezekiel J. Emanuel, M.D. This more medically-oriented advance directive includes six illness scenarios. For each, you consider possible medical interventions and goals of medical care. It also includes a proxy designation form. Can be purchased and downloaded from their web site: http://medicaldirective.org.

American Bar Association, Commission on Legal Problems of the Elderly

Washington, DC