Topic:

ADVANCE DIRECTIVES

In This Session:

Story about Margaret –
In 1998, Margaret Lazarz sat down with trusted relatives to orchestrate a critical juncture in her life — her final medical care.

Advance directives spell out wishes for health care should a patient become too ill to speak up. Doctors agree that directives can make things clear, even in a complicated and emotional time. Without them, family members are left guessing about critical medical decisions — and when they disagree, physicians typically continue life support, often extending suffering for all involved. 

About the Authors:

Robert A. Bendiksen, Ph.D., is professor of sociology and, since 1997, director of the Center of Death Education & Bioethics at the University of Wisconsin-La Crosse. Dr Bendiksen serves on the Gundersen Lutheran Medical Center’s Institutional Review Board and as Secretariat of the International Work Group on Death, Dying, and Bereavement. He has recently coedited several books including Death and Identity, Third Edition (with R. Fulton), Death, Dying & Bioethics (with G. Cox), and Complicated Grieving and Bereavement (with G. Cox and R. Stevenson). 

Bernard Hammes, Ph.D., is the Director of Medical Humanities for the Gundersen Lutheran Medical Foundation and the Gundersen Lutheran Medical Center in La Crosse, Wisconsin. His work as chair of the Institutional Review Board and Ethics Committee has resulted in two nationally recognized programs on advance care planning: If I Only Knew... and Respecting Choices. He has authored or co-authored numerous articles and book chapters that are focused on clinical ethics, advance care planning, and end-of-life issues.

Reading:

How to control your health care at the end of life? Write the ultimate directive


By Robert A. Bendiksen and Bernard J. Hammes

In 1998, Margaret Lazarz sat down with trusted relatives to orchestrate a critical stage in her life — her final medical care. With two surgeries and a pacemaker behind her and congestive heart failure a near certainty, the then-80-year-old knew there would come a time, not so far in the future, when she would need her loved ones to act on her behalf.
What Margaret Lazarz needed was an advance directive.
Advance directives spell out wishes for health care should a patient become too ill to speak. Doctors agree that directives can make things clear, even in a complicated and emotional time. Without them, family members are left guessing about critical medical decisions — and when they disagree, physicians typically continue life support, often extending suffering for all involved.
“We all fall into a trap of continuing treatment if we don’t know the patient’s views,” said Dr. Wayne Bottner, a hematologist at Gundersen Lutheran Hospital in La Crosse, Wis. “We end up providing more and more treatment even though it may not help or be of any value to the patient.”
Nearly 80 percent of Americans die in a hospital or nursing home and half are unable to make informed choices near the end of their lives. Fewer than 25 percent of Americans have written advance directives before they become ill.
Casual platitudes about future medical care — “Don’t keep me alive if I am a vegetable,” “Don’t keep me alive on machines,” or “No heroics” — are not enough. Legally, advance care planning has to be explicit to guide doctors and families.
Which is what Margaret Lazarz did.
She created a power of attorney for health care, designating her sister-in-law, Rosella Lazarz, and her niece, Janet Aide, as her representatives in making decisions. She didn’t want doctors to attempt cardio-pulmonary resuscitation (CPR) if her breathing and heart stopped unless she had a good chance of survival. Her wishes were put down in writing.
Margaret did two things right. First, she was specific in her instructions.
“Wishy-washy statements like, ‘Do everything if I am going to pull through (but do less if it does not look so good)’ are of little help,” said Dr. Jack Udell, an internist at Gundersen Lutheran.
Second, she picked close relatives whom she trusted to advocate for her and make difficult decisions under stressful situations.
“Picking a surrogate who is unable to make complex medical decisions” can complicate an already emotional time, Bottner said. They “often make decisions because of pressure from others rather than the patient’s values.”
This year, Margaret’s relatives were put to the test.
Margaret moved from a hospital to a nursing home in Madison, Wis., this spring after she was unable to breathe and her lungs filled with fluid. It was then that she changed her mind about her advance directive. When asked, “Do you want to be resuscitated?” she said, “Yes.”
But, her niece later said, “I think she was scared and sick when she made this decision.”
Back in the hospital, Margaret’s personal doctor was met with a list of questions from the family: How bad was her heart? What could she expect for the future? If her breathing and heart stopped, would CPR be successful? Would her treatment be top-quality if she did not choose CPR? Could a plan be made to assure that she was comfortable no matter what happened?
Gently, the doctor explained to Margaret that CPR would not help extend her life with any quality, if it worked at all. She then agreed to let her written directive stand.
In just a few weeks her breathing and heart began to fail again. To make her more comfortable, she was transferred to a hospice facility, where she died the next day. Her advance directive, well understood by her family, had been respected.
Despite the compassionate outcomes for many patients with directives, the challenge is to encourage Americans to tackle two subjects they’re uncomfortable talking about: illness and death.
A popular version of advance directives is Five Wishes, which has been used by 1 million Americans, according to Jim Towey, president of the senior advocacy group Aging with Dignity. He calls Five Wishes “a discussion tool.”
It asks five simple questions: Whom do you want to make health care decisions for you when you can’t make them? What kind of medical treatment do you want? How comfortable do you want to be? How do you want people to treat you? And what are your wishes for your loved ones?
“I helped my Mom as she filled out her Five Wishes,” said Towey. “She is 83. She laughed, she got tears in her eyes — it wasn’t easy for her, but she was relieved when she finished. And I was glad to know exactly what her wishes are — not only her medical care choices, but also about pain control, comfort, forgiveness and dignity.”
Nationally, Partnership for Caring Inc., has been at the forefront, distributing advance directives tailored to each state’s legal requirements. “Living wills and/or medical power of attorney forms are packaged with clear instructions for completing them and they can be downloaded free from our web site,” said Garey Eakes, chief operating officer for the organization.
In La Crosse, Wis., a community education effort has increased the number of people writing advance directives. Nearly 85 percent of patients who died over 11 months in 1995 and 1996 had them. Similar programs are underway in Massachusetts, New Hampshire, North Carolina and South Carolina.
And the AARP has put its considerable weight behind promoting the use of directives among its formidable membership.
“We at AARP encourage people to plan ahead and talk openly with their loved ones about eldercare, about becoming incapacitated and about preferences for end-of-life care,” said Bill Novelli, AARP’s executive director.
Advance directives first became popular in 1977, when the family of 22-year-old Karen Ann Quinlan sparked a controversy by asking the New Jersey Supreme Court to withdraw life-support from their comatose daughter. In a highly publicized, emotionally charged court battle, the court allowed for withdrawal of life-support by appointing the father legal guardian and permitting him to make the decision on his daughter’s behalf. This landmark decision paved the way for the legitimization of living wills in most states, California being the first in 1976.
Since 1991, federal law has required hospitals and nursing homes to ask all adult patients if they have written plans and to help them write them down if they don’t.
Unfortunately, moments of crisis are not the best time to be asked. Planning for living at the end of life is much more than simply signing a document. These discussions need to start long before a medical crisis.
The discussions may be the hardest part of the process. Advance directives can be completed alone or with assistance from a health professional or an attorney. Depending on the state, they involve one or both of two documents: a living will, which states wishes regarding medical care and a durable power of attorney for health care, which designates another person to make medical decisions on a patient’s behalf.
But the best time to tackle the discussions is before a crisis comes up, especially if you are over age 70 or have a serious, progressive illness.
“It (was) a big relief to have this plan,” said Rosella Lazarz, who feels comfortable that she abided by her relative’s last wishes. And at the age of 80, Rosella fully intends to make an advance directive for herself.
2001, Partnership for Caring, Inc.
Distributed by Knight Ridder/Tribune Information Services. 

Tips:

Before drawing up an advance directive, think through these questions and then discuss them with your loved ones:

  1. Who should make your health care decisions if you can’t make them yourself? Is this person someone who knows and would honor your values and views? Can he or she make complex decisions in stressful situations?
  2. If you had an irreversible brain injury, at what point would you reject CPR, a feeding tube and antibiotics.
  3. Do you have any religious, spiritual or philosophical beliefs central to your life that would influence what medical treatments you would or would not want?
  4. If organ or tissue donation is a possibility, would you want to donate?

Questions to consider if you have a specific illness:

  1. Early Alzheimer’s disease: What would you want to happen if you stopped eating because of your Alzheimer’s? If you developed an overwhelming infection, at what point would you want antibiotics stopped?
  2. Progressive lung disease: Would there be a time when you would not want the support of a breathing machine?
  3. Chronic kidney failure: Under what circumstances would you want dialysis stopped? 
  4. Congestive heart failure: When would it make sense not to attempt resuscitation?

Once you’ve answered these questions, here’s how to tackle an advance directive:

Advance directives are written instructions regarding the provision of health care for use when you become incapacitated. They may be completed on your own or with assistance from a health professional or an attorney. Use forms valid for your state and have them signed, dated and witnessed properly. Generally, health providers do not charge for the form or for assistance in completing it. You may revoke an advance directive at any time by saying it is revoked, indicating so in writing or by destroying the document.
There are two types of advance directives. Not all states require both:

  • Living wills state your medical treatment preferences should you become incapable of making health care decisions.
  • A durable power of attorney for health care appoints a surrogate or proxy decision-maker for health care decisions should you become incapacitated. It could include any special instructions and preferences.

Other considerations:

Those over age 70 or who have a progressive disease are prime candidates for writing advance directives. But anyone over the age of 18 can start to think about it. Disconnecting life support from a critically injured young person is an emotional issue which often leads to years of conflict and ends up in court when family members can’t agree on what the injured person would have wanted and there is no advance directive. Advance directives first became popular when the family of Karen Ann Quinlan, a 22-year-old who sustained irreversible brain damage in 1975, successfully sought to disconnect her life support. 

  • The AARP estimates that 35 percent of advance directives can’t be found when they’re needed. Keep copies in a safe place, but not a safe deposit box. Some people keep copies in their glove compartment. You also should give copies to whoever who will act as your proxy in case you become incapacitated, as well as your doctor and hospital. 
  • To be on the safe side, if you live part of the year in a different state, draw up an identical advance directive using the official documents from that state.
  • Hospital emergency rooms may not be able to honor an advance directive since the staff may have little time to properly evaluate it.

Discussion Questions:

  1. What type of expressions do you and others use to indicate when you would not want medical treatment to be used to sustain essential life functions (for example “Don’t keep me alive if I am a vegetable”)? Discuss these expressions and see if they provide a clear understanding so others could make your decisions.
  2. What qualities does a person need to have to make important health care decisions for you when you cannot make them for yourself? Who else might help this person make decision? Are there persons you would not want involved in making health care decisions?
  3. How can you be sure that any advance directive you create will be available and respected if it were needed? How are these documents kept and retrieved by your hospital and doctor? Would your doctor understand what you wanted?
  4. If you do not want medical treatment like CPR in the event of an emergency like cardiac arrest, your written advance directive will not help by itself. How can you establish a plan that includes a physicians orders so your choices can be respected even in the event that emergencies services were called?

Points and Observations:

  1. In the story Rosella and Janet had to strongly advocate for Margaret. Margaret made a decision about CPR and then seemed to change her mind. Rosella and Janet had to consider how well Margaret was thinking when she appeared to change her mind and to consider if she had all the information she needed. Consider the role of being a person’s surrogate. What things might surrogates need to do? How might they prepare for this role? When a person becomes a surrogate, how much leeway does he or she have in following another’s instructions?
  2. Much planning for future medical decisions is based around broad, unclear concepts like “terminally ill.” Margaret had heart failure and planned for the most likely circumstance and treatment that would affect her in the future…cardiac arrest. Most people die of progressive diseases that are known well in advance. These include illnesses like congestive heart failure or Alzheimer’s. How can knowing a disease and its likely course help make clearer plans for future decisions? How do you work with your doctor to get the information you need to make such specific plans?

References:

  1. Basta, L.L. (2000). A graceful exit: Life and death on your own terms. Xlibris Corporation. This readable book provides background  and rationale for "Project Grace, a 1998 Florida-based advance care plan: Guidelines for Resuscitation And Care at the End-of-life. Two chapters deal with "The Birth of the Living" Willand "Does the Living Will Deserve to Live?" Difficulties in the implementation of written documents are discussed and a broader proposal   is presented that includes medical futility, advance care planning, palliative   care, and education/implementation in this statewide project.
  2. Buchanan, A.E., & Brock, D.W. (1990). Deciding for others: The ethics of surrogate decision making. NY: Cambridge University  Press. An advanced ethical discussion that provides equal treatment to theory and practice when patients are not competent to make medical decisions on their own behalf. Special attention is given to minors, the frail elderly, and the mentally ill. The authors attempt to balance respect for persons, doing good,  and distributive justice concerns from a health care provider perspective.
  3. Cantor, N.L. (1993). Advance directives and the pursuit of death with dignity. Bloomington, IN: Indiana University Press.   An excellent overview of how to help patients and clients retain a modicum of dignity when dying in a high-tech environment. Cantor raises and answers questions about drafting, interpreting, administering, and enforcing advance directives  with an eye to both law and ethics. This valuable social science perspective is recommended for lawyers, clergy, social workers, and those in health care, as well as patients and family members looking for a broader perspective of  advanced directives.
  4. Hammes, B.J., et.al. (2000). Respecting choices: Advance care planning facilitators manual. La Crosse, WI: Gundersen Lutheran   Medical Foundation. This manual is a complete guide for professionals to assist   adults with all aspects of advance care planning that has been clinically tested.   The manual provides important legal, ethical and medical background. The most   important feature of the manual is its clear and practical advice about how   to assist different groups of patients with planning at different stages of   health or illness.
  5. Hill, P.T., & Shirley, D. (1992). A good death:   Taking more control at the end of your life. Reading, MA: Addison-Wesley Publishing Company, Inc. Hill and Shirley are associated with "Choice in Dying-the national council for the right to die"--that has been active for three decades in supporting individual freedom and compassionate care at the end-of-life.  This very readable book provides case examples that illustrate the importance of "making our wishes known." Their discussion includes how advance directives work in hospitals and nursing homes, easing pain and symptoms, the challenge of suicide, and the perspectives of the right to die in Protestant, Roman Catholic, Jewish, and Buddhist traditions.
  6. Hoefler, J.M. (1997). Managing death. Boulder, CO: Westview Press. This is a guide for patients, family members, and care providers on forgoing treatment at the end-of-life. Hoefler reviews the history of our collective search for a broader consensus on how to make decisions at the end-of-life, especially decisions about withholding or withdrawing treatments. His model   included decisions about medical futility, patient autonomy, and patient dignity   at the end-of-life. Health care providers should take responsibility to begin   this discussion with their patients.
  7. Moller, D.W. (2000). Life's end: Technocratic dying in an age of spiritual yearning. Amityville, NY: Baywood Publishing. This author takes a sociomedical view of what it means to die in a medical setting today. His interviews with dying patients, family members, and  health care providers provide a rich discussion of encountering mortality, contemplating death, the problem of meaning, fear and denial of death, technological medicine,   technocratic physicians, and human dying. The importance of fellowship in a   context of the impersonality of hospitals and the stigma of dying provides sound   sociological reasons for conversations and advance directives.
  8. Nuland, S.B. (1994). How we die: Reflections on life's final chapter. NY: Alfred A. Knopf. The reality of dying from a variety of diseases and traumas is described in a human context   by this author and surgeon. The importance of advance directives is highlighted in his chapters on Alzheimer's disease and cancer. Nuland (p. 255) shares the goal that, "when the end is near, our last moments will be guided not by the bioengineers but by those who know who we are."
  9. Prendergast, T. (2001). Advance care planning: Pitfalls, problems, and promise. Critical Care Medicine, 29 [Suppl.], N34-N39.   This article reviews the problems and promises for advance care planning over the last ten years. It provides a clear history of why advance care planning   has often failed to succeed and what approaches have had success.
  10. Preston, T.A. (2000). Final victory: Taking charge of the last stages of life, facing death on your own terms. Roseville, CA: Prima Publishing. The objective of this physician-author is to help patients take charge "from the start", "after the diagnosis," and "when the end is near." Practical guidelines are provided on the use of living wills and durable powers of attorney for health care, as well as those essential conversations with family, friends, and medical   care providers. Issues are discussed in the context of current legal limitations  on physicians and patients.

Links: You must be connected to the internet for these links to work.

Aging with Dignity
Provides the Five Wishes Living Will, legal in 33 states ($5 fee).
1-888-5-WISHES 
www.agingwithdignity.org


AARP
Information on obtaining and completing advance directives.
601 E St., NW 
Washington, DC 20049 
1-800-424-3410 
www.aarp.org/endoflife/

American Medical Association
Booklet on advance directives.
515 N. State Street
Chicago, IL 60610
(312) 464-5000
www.ama-assn.org/public/booklets/livgwill.htm 

Partnership for Caring: America’s Voices for the Dying
Provides free, state-specific living wills.
PFC Publications – Publications Office 
325 East Oliver Street
Baltimore, MD 21202
Hotline: 1-800-989-9455 (option 2)
www.partnershipforcaring.org

Gundersen Lutheran 
End-of-Life Care
Programs that help health care providers implement advance directives in hospitals. 
1836-1910 South Avenue
La Crosse, WI 54601-5494
(608) 782-7300 or 1-800-362-9567
www.gundluth.org/eolprograms