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Modules:

  • Introduction
  • 1. Advance Care Planning
  • 2. Communicating Bad News
  • 3. Whole Patient Assessment
  • 4. Pain Management
  • 5. Assisted Suicide Debate
  • 6. Anxiety, Delirium
  • 7. Goals of Care
  • 8. Sudden Illness
  • 9. Medical Futility
  • 10. Common Symptoms
  • 11. Withholding Treatment
  • 12. Last Hours of Living
  • 13. Cultural Issues
  • 14. Religion, Spirituality
  • 15. Legal Issues
  • 16. Social and Psychological
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    Back to Module 1: Advance Care Planning
    Resources

    Recommended Literature
    Validated Advisory Documents - References
    Advance Care Planning Law and Policy
    Advance Care Planning Discussion Script
    Advance Care Planning Exercise
    Worksheets and Forms
    Downloadable Documents

    Recommended Literature

    Advance Planning. In: Ferris FD, Flannery JS, McNeal HB, Morissette MR, Cameron R, Bally GA, eds. Module 4: Palliative care. In: A Comprehensive Guide for the Care of Persons with HIV Disease. Toronto, Ontario: Mount Sinai Hospital and Casey House Hospice Inc.; 1995:118-120.

    Council on Ethical and Judicial Affairs. Optimal use of orders-not-to-intervene and advance directives. In: Reports on End-of-Life Care. Chicago, IL: American Medical Association; 1998:52-58.

    Di Prima K. Advance Care Planning [videotape/study guide]. Chicago, IL: American Medical Association; 1997. The Ethical Question Video/Study Guide Series.

    Emanuel LL. Advance directives. In: Berger A, Levy MH, Portenoy RK, Weissman DE, eds. Principles and Practice of Supportive Oncology. Philadelphia, PA:Lippincott-Raven;1998:791-808 .

    Emanuel LL, et al. Advance care planning as a process: structuring the discussions in practice. J Am Ger Soc. 1995;43(4): 440-446.

    Teno JM, Lynn J. Putting advance-care planning into action. J Clin Ethics. 1996;7(3):205-214.

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    Validated Advisory Documents - References

    Emanuel LL. Advance directives: what have we learned so far? J Clin Ethics. 1993; 4(1):8-16.

    Pearlman R, Starks H, Cain K, Cole W, Rosengren D, Patrick D. Your Life Your Choices, Planning for Future Medical Decisions: How to Prepare a Personalized Living Will. Seattle, WA: Patient Decision Support; 1992.

    The University of Toronto Joint Centre for Bioethics. The Joint Centre for Bioethics Cancer Living Will Form. Available at: http://www.utoronto.ca/jcb/canchap5.htm Accessed October 22, 1998.

    The University of Toronto Joint Centre for Bioethics. The Joint Centre for Bioethics HIV Living Will Form. Available at: http://www.utoronto.ca/jcb/hivchap5.htm Accessed October 22, 1998.

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    Advance Care Planning: The Law and Policy

    Common law, federal and state legislation, and official policies of medical organizations support advance care planning. US Supreme Court, 1990: Upheld the patient’s right to self-determination, establishing that the right applies even to patients who are no longer able to direct their own health care, and that decisions for incompetent patients should be based on their previously stated wishes.

    Federal law, 1991: The Patient Self-determination Act requires that patients be informed of their rights to accept or refuse medical treatment and to specify in advance the care they would like to receive should they become incapacitated.

    State law: The patient’s right to specify wishes in advance has been codified into statute in all 50 states. Statutory documents recognized by law include the living will and the durable power-of-attorney for health care.

    Statutory documents are those that are specifically described and defined in state statute. These documents are to help protect physicians who honor a patient’s wishes. When such documents are used, rights, obligations, and protections are clearly defined. Nonstatutory documents or advisory documents are legal. They are based on common law rights. They are supposed to accurately reflect a patient’s wishes. In some states or settings, an advisory document is enough; in others, a statutory form should be used as well. Especially in states where a legal guardian may be necessary if there is no statutory power-of-attorney for health care, one is recommended.

    Professional policy: The AMA’s Council on Ethical and Judicial Affairs identified advance care planning as an essential component of standard medical care in 1997. It called for physicians to conduct advance care planning discussions on a routine basis using advisory documents as an adjunct to statutory documents, such as the living will and the durable power-of-attorney for health care. The American College of Physicians’ Ethics Manual, 4th edition, 1998 also supports advance care planning.
     

    See Module 15 - Legal Issues in End of Life Care for further discussion and detail

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    Advance Care Planning Discussion Script

    The following script provides an example of how you might discuss a patient’s concerns and needs about advance care. You may want to use this script in a role-playing exercise, alone or with another person, in order to experiment with and individualize the wording and phrasing. You may notice that you are more comfortable in these discussions after practice with this and similar scripts.

    Mrs. Jones has come in for a routine examination:

    "Mrs. Jones, I’d like to talk with you about something I try to discuss with all of my patients. It’s called advance care planning. In fact, I feel that this is such an important topic that I have done this myself, with my own physician. Are you familiar with advance care planning?…"

    "Have you thought about the type of medical care you would like to have if you ever became too sick to speak for yourself? That is the purpose of advance care planning, to ensure that you are cared for the way you would want to be, even in times when communication may be impossible.…"

    "There is no change in your health that we have not already discussed. I am bringing this up now because it is prudent for everyone, no matter what their age or state of health, to plan for the future...."

    "Advance care planning will help both of us to understand your values and goals for health care if you were to become critically ill. Eventually we may put your choices into a written document that I would make part of your patient record. We call this document an advance directive, and it would only be used if you were to lose the capacity to make decisions on your own, either temporarily or permanently...."

    "Would you like to talk further about the kind of care you would want to have if you were no longer able to express your own wishes?"

    "I also like to ask my patients if they have someone that they would like to identify to act on their behalf in the event that they are unable to express their own wishes. This person could be a relative or a friend. Is there someone whom you would want to be part of our discussion and whom you might want to have act on your behalf?..."

    "Here is a copy of the form that I would like to use to structure our conversation. We will talk about it in more depth the next time we meet. Please think about it, talk with your family, and write down any questions you have. Also, next time please bring anyone with you whom you want to include in our discussion...."

    Next Visit:

    Ask questions about specific scenarios. Start by asking about a persistent vegetative state.

    "Mrs. Jones, I suggest we start by considering a few examples as a way of getting to know your thinking. I will use examples that I use for everyone. Let’s try to imagine several circumstances. We will go through 4 and then perhaps another 1 or 2. First, imagine you were in a coma with no awareness. Assume there was a slight chance that you might wake up and be yourself again, but it was not likely. Some people would want us to withdraw treatment and let them die, others would want us to attempt everything possible, and yet others would want us to try to restore health, but stop treatment and allow death if it were not working. What do you think you would want under these circumstances?"

    Then ask Mrs. Jones similar questions about 3 other scenarios: onset of coma from which there is a chance of recovery, but with significant disability

    onset of dementia when there is already an advanced life-threatening illness

    onset of dementia with no other life-threatening diagnosis

    If she is already experiencing a significant illness, ask Mrs. Jones questions specific to her current illness:

    "We should also consider the situations that your particular illness can cause; that way you can be confident we will do what you want. For sure, all people are different and you may never face these circumstances. Nevertheless, let’s imagine . . . "

    "People sometimes think about circumstances they have seen or heard about. Some may seem worse than death. Do you ever think about such circumstances?"

    Finally, ask Mrs. Jones about how she would like to handle a sudden critical illness that is life threatening.

    "Well, we’ve gone through several scenarios now. It seems to me that you feel particularly strongly about…. Indeed, you move from wanting intervention to wanting to be allowed to die in peace at the point when…. Do I speak for you correctly if I say that your personal threshold for deciding to let go is …?"

    "I think you have given a good picture of particular decisions you would want. Can you also say something about the values or beliefs that you hold? Understanding your more general views can be an important part of getting specific decisions right."

    Next Visit:

    "Mrs. Jones, have you and …[your proxy/family member] had a chance to continue the discussion we started 2 weeks ago? I see you have a completed statement now. Let’s review your preferences."

    "I am glad we went through this planning process together. I have a much better idea of what matters to you than I did before, and that will help me to be a good physician for you — in general, as well as in case of serious illness."

    "If you feel ready to, we can write down your preferences, and all 3 of us can sign this document and make it official. Then we will put it into your medical record and give you copies to take home."

    Two Years Later:

    "Mrs. Jones, 2 years have gone by since we completed your advance care plans, and in that time a lot has happened. People sometimes change their wishes, so let’s review the wishes you wrote down a year ago."

    "Your choices have changed on a couple of your earlier decisions when we reviewed your statement, even though we have discussed the issues quite a lot. You have already said that you want …[proxy/family member] to be your proxy. Would you prefer to give these few decisions over to him/her to decide according to what he/she thinks would be in your best interests?"

    "For the remaining decisions, about which you are clear and firm, would you like …[proxy/family member] to stick closely to them, or would you prefer to give him/her room to make changes if he/she thinks your best interests would be better served by a different decision?"

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    Advance Care Planning Exercise

    It is helpful to be able to say to patients and families that you have done your own advance care planning as a matter of routine care. It is also helpful to have experienced the process of trying to imagine being in states of serious illness and mental incapacity.

    You may be interested in using the following exercise in a group educational setting. This exercise provides a way for health care professionals to consider their feelings and responses to their own advance care planning.

    First Scenario

    We will start by considering a scenario in which you have an advanced illness with a very poor prognosis (less than 3 months if the disease follows its usual course). You are in the hospital in a coma with a poor likelihood of recovery when you develop a small bowel obstruction.

    First, consider what you would want to be the goals of your care in this circumstance. Would you want: (a) all possible intervention to prolong life, (b) full intervention, but with early reassessment, (c) interventions that may help but that are not too invasive, or (d) noninvasive comfort care only? [Pause briefly.]

    Now, consider what treatments you would want. Would you want major surgery? [Pause briefly]. How about an intermediate option with a nasogastric tube, and no intake by mouth? [Pause briefly.] How about only intravenous antibiotics? [Pause briefly.] What about only comfort measures with analgesics and sedatives?

    Let’s look at what goals you selected. How many of you selected all possible interventions to prolong life? [You may want to list this on the left-hand side of a flip chart or overhead projector. Count hands and record the number.] How many selected full interventions, but with early reassessment? [Count hands and record the number.] How many chose interventions that might help but are not too invasive? [Count hands and record the number.]How many chose noninvasive comfort care only? [Count hands and record the number.]

    Let’s look at what treatment options you selected. How many wanted major surgery? [Count hands and record the number on the right-hand side of the flip chart or overhead projector opposite the corresponding goal.] How many wanted intermediate interventions with an NG tube? [Count hands and record the number.] How many wanted antibiotics? [Count hands and record the number.] How many chose noninvasive comfort care only? [Count hands and record the number.]

    Notice how many of you declined all interventions and wanted only comfort measures. Some of you wanted some noninvasive or minimally invasive measures. Also, notice the inconsistencies. When faced with specific choices, some of you changed to a different "level" as related to overall goals. If we were to move to a scenario of rosier prognosis, we would still be likely to find a range of choices within the group. Many of you would change your choices.

    This process leads to an opportunity to think about your own internal inconsistencies, how you might value various options, and how you would set limits. Further, it helps you to be specific about your relationship to death and dying.

    Many of the questions in your mind are questions that patients will have. Many are those that only people with advanced education ask. In fact, lawyers and physicians tend to be either the fastest or the slowest to complete these types of exercises. Most people, regardless of educational experience, find these exercises helpful and doable.

    Second Scenario

    Now, consider a scenario in which you have a mild chronic condition. It affects your day-to-day living to a modest degree. You now contract a life-threatening but potentially reversible condition such as Staphylococcus aureus pneumonia. You are barely conscious and cannot make decisions for yourself. Let’s go through the same exercise. First, let’s discuss goals. Would you want: (a) all possible intervention to prolong life, (b) intervention, but with early reassessment, (c) interventions that may help but that are not too invasive, or (d) noninvasive comfort care only? [Pause briefly.]

    Now, consider what treatments you would want. Would you want care in an intensive care unit, including pressors and intubation? [Pause briefly.]Would you want a more intermediate intervention, such as multiple intravenous antibiotics and low-dose pressors but no transfer to an intensive care unit and no intubation? [Pause briefly.]

    Now consider a barely invasive intervention — would you want IV antibiotics but a limit on the degree of laboratory testing? [Pause briefly.] Would you want only comfort care with analgesics and sedatives? [Pause briefly.]

    Let’s look at what you selected now. How many of you selected all possible interventions to prolong life? [You may want to list this on a flip chart or overhead projector on the left hand side, as before. Count hands and record the number.] How many selected intervention, but with early reassessment? [Count hands and record the number.] How many chose interventions that might help but not too invasive? [Count hands and record the number.] How many chose non-invasive comfort care only? [Count hands and record the number.]

    Let’s look at what treatment options you selected. How many chose all measures to prolong life? [Count hands and record the number on the right-hand side of the flip chart or overhead projector opposite the corresponding goal.] How many wanted intermediate interventions with IV antibiotics, but no ICU care? [Count hands and record the number.] How many wanted only IV antibiotics? [Count hands and record the number.] How many chose noninvasive comfort care only? [Count hands and record the number.]

    Notice the changes. Most of you wanted interventions that were much more "aggressive". Contrast your answers to this scenario with the first. Do you have a sense of where your threshold for intervention lies relative to prognosis and disability? Some of you could now move to other scenarios and treatments that would more clearly define your personal threshold for intervention. For many people, it is enough to define where the threshold is, without resolved detailed decisions at the threshold. Often this is where physician recommendation plays a stronger role and proxy discretion comes in. Many patients are content with this.

    Notice how most of you selected intervention choices that were consistent with your general goal. This is usually the case. However, some of you chose treatments that didn’t quite correspond with the overall goal. Research shows that trying to predict intervention choices from stated general goals (such as those in a living will) is weaker than extrapolating from specific preferences. While identifying goals provides a reality check and organizes our thinking, this is not a substitute for considering specific examples.

    Most people, after weighing other scenarios and having fully completed an advance care planning worksheet, will feel that their views are well articulated. Some proportion of patients, however, will feel that there is something more that needs to be said. Invite them to give you a statement in their own words, such as in a letter. Ask them to consider other matters, such as whether the patient wants to die at home, or whether autopsy and/or organ donation is desired. Invite the formal proxy to be designated. If more than one proxy is desired, invite the patient to give some sense of order of authority in cases of disagreement.

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    Worksheets and Forms

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    Downloadable Documents

    • Abobe Acrobat Reader    To Download Adobe Reader
    • terminology.pdf    Advance Care Planning Terminology
    • steps.pdf    Five Steps for Successful Advance Care Planning
    • application.pdf    Advance Care Planning Complementary Application
    • scripts.pdf    Advance Care Planning Discussion Scripts
    • exercise.pdf    Advance Care Planning Exercise
    • reimbursement.pdf    Reimbursement Mechanisms and Procedure/Diagnosis Coding for Physician Services in Palliative Care
    • module1.pdf    Module 1: Advance Care Planning
    • module1.ppt    Module 1: Advance Care Planning (Microsoft PowerPoint Slide Presentation)

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