Facilitators Manual

Caring at the End of Life: Management and Communication Strategies
Table of Contents
Getting Started
Technical Information ............................................................................ 2 Program Features and Functions ............................................................. 3 Navigation ........................................................................................... 4 Curriculum Synopsis ............................................................................. 5
Module I:
Delivering Bad News

Introduction .......................................................................................... 6 Themes ................................................................................................ 7 Suggested Teaching Strategies .............................................................. 17
Module II: Advance Care Planning

Introduction ........................................................................................ 18 Themes .............................................................................................. 19 Suggested Teaching Strategies .............................................................. 26
Module III: Informed Consent in the Emergency Department

Module IV: Withdrawing Life-sustaining Treatment

Appendix
Common Themes ................................................................................ 47 Using Multimedia to Enhance Physician-patient Communication at the End of Life .................................................... 48 Credits ............................................................................................... 50 Facilitator Survey ................................................................................ 51
Disclaimer
The case presented in Caring at the End of Life illustrates several difficult issues in health care at the end of life. All persons portrayed in this program are fictional portraits and are not representative of any one individual. The caregivers in this case are role-played by real physicians and nurses, who for educational purposes have intentionally modeled both medically appropriate and inappropriate behavior.
Getting Started
Technical Information
System Requirements and Settings
Windows 95 / 98 K 120 MHz Pentium PC K 16 MB RAM (32 MB recommended) K 4 speed CD-ROM drive (8 speed recommended) K High (16bit) or True (24bit) color display; will run poorly in 256 colors K Speakers and Sound Card K Designed for 640 x 480 screen resolution Macintosh System 8 or higher K 120 MHz PowerPC K 16 MB RAM (32MB recommended) K 4 speed CD-ROM drive (8 speed recommended) K Thousands (16bit) or Million (24bit) color display; will run poorly in 256 colors Also:
K K
Disable any screen saver when viewing program Turn off any CPU sleep function, or set it to a minimum of 15 minutes Unless you have speaker volume controls, set the system volume prior to viewing; no volume adjustment exists within program.
Required Software / Plug-ins

Adobe Acrobat (for printing references) and Apple QuickTime for Windows (for viewing videos) are provided on the CD-ROMs. Installation instructions can be found in the ReadMe file on each CD-ROM.
CD-ROM Installation and Program Start-up

Insert the Caring at the End of Life CD into your CD-ROM drive. Double click on the CD icon or on your CD-ROM drive. Double click on the file named Run Me.exe (Windows) or Run Me (Macintosh) to start the program. If you have any problem viewing the video portion of the program, read the Installing Quicktime portion of the ReadMe file on the CD-ROM.
Getting Started
Program Features and Functions
This facilitators guide accompanies a curriculum consisting of four CD-ROM modules which illustrate and probe difficult topics facing health professionals in caring for patients at the end of life. Centered on the story of a woman with a life-threatening illness, each module introduces themes that raise strategy and management issues in end-of-life care. The program format is designed to engage you, to be clinically relevant, and to give new insight into the problems faced by providers and patients. Curriculum Modules The Caring at the End of Life curriculum contains four modules: Module I: Delivering Bad News Introduction Mrs. Nelsons Story Potential Pitfalls in Giving Bad News Patient-centered Decision Making References Module II: Advance Care Planning Introduction Mrs. Nelsons Story Themes References Module III: Informed Consent in the Emergency Department Introduction Mrs. Nelsons Story Themes References Module IV: Withdrawing Life-sustaining Treatment Introduction Mrs. Nelsons Story Themes References
Please complete the Facilitators Survey included on Page 51
Getting Started
Navigation
Main Menu Click on the MAIN MENU within each module to display the various sections available. You can turn the background music on or off by clicking on the MUSIC button, and you can also toggle between the MAIN MENU and the SITEMAP by clicking the SITEMAP button. To exit the program, click the QUIT button.
Sitemap Clicking the BULLET POINTS icon will take you directly to the summary screens for each of the themes within a module. The NARRATION icon will take you to a narrated introduction to each section or theme. The VIDEO icon brings you directly to the video portion of a section or theme. HOW TO USE provides general user information on select sections of the module. You can print out each theme by clicking on the individual PRINT icon or use the PRINT ALL button (only on the SITEMAP ) to get a printout of all module screens.
Navigating through the Module From the MAIN MENU, you can click on a section title to display that section. From the SITEMAP , you can view an entire section or theme by clicking on either its title or the NARRATION icon next to the title. To jump right to the video segment, click on the VIDEO icon next to the title. Click the theme BULLET POINTS icon to move directly to the summary screens for that theme. The QUIT button exits you from the program. Certain sections display a HOW TO USE icon that will provide you with general information on using that section.
Getting Started
Curriculum Synopsis
It is assumed that individuals using the Caring at the End of Life curriculum and the Facilitator Guide have previous knowledge of the content contained within the curriculum and have group facilitation experience. The Caring at the End of Life curriculum is designed to be used by both individuals and groups. This guide has been developed to assist those facilitating use with a group to become familiar with the content, format, and functionality of the program. An overview of the curriculum modules is provided below. Later chapters look at each module in detail, providing objectives, themes, discussion points, and suggested teaching strategies. Facilitators should familiarize themselves with the content prior to conducting a group session by reviewing the guide and previewing the modules. In addition, it is recommended that, before conducting a session, facilitators should observe or participate in a group discussion run by another facilitator. Module I: Delivering Bad News The first module introduces viewers to the story of Mrs. Edith Nelson, a 63-year-old patient who has just been diagnosed with Stage IV ovarian cancer discovered unexpectedly during an operation for a hiatal hernia. Her caregivers each face the tough situation of giving her the unfortunate news and raising treatment options. Each encounters potential pitfalls in delivering bad news, illustrating how dealing with the facts of an unexpected life-threatening illness are unavoidably linked with emotions and coping. Module II: Advance Care Planning During the second module, viewers join Mrs. Nelson and her primary care physician as they start to address advance care planning. They discuss living wills, identification of a health care proxy, and heroic measures. Module III: Informed Consent in the Emergency Department In Module III, severe abdominal pain sends Mrs. Nelson to the hospital emergency department where the discussions center around the potential benefits and risks of exploratory surgery. Mrs. Nelson is asked if she wants to suspend her Do Not Resuscitate (DNR) order for the purpose of surgery. The module concludes with Mrs. Nelson signing the informed consent form for the surgery. Module IV: Withdrawing Life-sustaining Treatment Following surgery, Mrs. Nelson is in the intensive care unit on a ventilator and diagnosed with recurrent cancer. This module includes the discussion of withdrawal of life-sustaining care and some conflict among the caregivers and family regarding the best course of action in this circumstance.
Module I: Delivering Bad News

Introduction
Every clinician at one time or another will need to inform a patient of an unfortunate diagnosis or prognosis. Some clinicians must do this quite frequently. This role requires more than common sense and technical skill and it is particularly difficult in a culture that values youth and vitality. Although the process of delivering bad news cant change a diagnosis or prognosis, it can have an effect on the treatment path both for patients and health professionals. You will begin by viewing the first episode of Mrs. Nelsons story. Then, in order to explore the numerous issues involved, the video scenario is broken into themes potential pitfallsfor closer examination. This is followed by a brief look at patient-centered medical decision making.
Learning Objectives
K K
Recognize that the manner in which the clinician delivers bad news influences how the patient frames the diagnosis and the prognosis. Recognize that personal communication skills can be enhanced and made more adequate.
Mrs. Nelsons Story

Mrs. Edith Nelson is a 63-year-old woman who has just been diagnosed with ovarian cancer. The setting is in her hospital room, five hours after her cancer was discovered unexpectedly during an operation for a hiatal hernia. Four professionals interact with Mrs. Nelson in the first 24 hours after her operation: her surgeon (Dr. Adams), a nurse (Ms. Humphrey), an oncologist (Dr. Bono), and her primary care physician (Dr. Sanders). Each caregiver enters at a different phase in Mrs. Nelsons reaction to the bad news.
Themes
Discovering a life-threatening illness and then delivering this information opens a new chapter in the clinician-patient relationship. This is evident whether the clinician is meeting the patient for the first time or beginning a more demanding relationship between acquainted individuals. Although learning about a serious diagnosis will be overwhelming for the patient regardless of the care that the physician uses in communicating the news, communication done well can reduce stress for both patients and Module I Themes clinicians. What the physician says, and the 1) Openings ..................................... 7 manner in which it is said, can have a lasting 2) Uncertainty .................................. 8 impact on patients. Delivering news about a patients status is as fundamental a part of medi- 3) Family ......................................... 9 cal care as the treatment prescribed for the illness. 4) Giving Advice ............................ 10 In many ways, clinicians can assist patients in 5) Personal Responsibility and Guilt . 11 coping and can shape the tone of future inter6) Nonverbal Communication .......... 12 actions, thereby potentially improving patient 7) Goals ......................................... 13 satisfaction and welfare. Mrs. Nelsons story is 8) Surprise ..................................... 14 broken into 10 themes, described below in terms 9) Taking Control ........................... 15 of the associated objectives and discussion points. 10) Leavings .................................... 16

Theme 1: Openings
Here, Mrs. Nelson first learns about the diagnosis of ovarian cancer, found unexpectedly during her hiatal hernia operation. Adopting an appropriate mood in which to deliver bad news may be difficult if one is pressed for time, stressed, or unprepared. A major challenge for clinicians is to respond with empathy to the devastating feelings, while at the same time beginning the process of coping and decision making by the patient. Learning Objective K Recognize that initial interactions with a patient can help promote the goals for patient care and help determine the level of trust between the patient and clinician. Video Segments 1. Dr. Adams is the first to break the bad news that Mrs. Nelson has an unexpected, life-threatening illness. He cares about her, but at the same time, feels a duty to tell the truth. 2. Ms. Humphrey enters for a routine post-op check. She is surprised and unprepared for Mrs. Nelsons anguish. 3. Dr. Bono enters anticipating Mrs. Nelsons distress. 4. Dr. Sanders enters much later. Mrs. Nelson is in a new phase of dealing with the information and there is a preexisting relationship between Mrs. Nelson and Dr. Sanders. Discussion Points 1. What are some better ways to begin this conversation? 2. Which clinician creates the greatest degree of trust? Why? 3. Which clinician makes Mrs. Nelson feel most comfortable? 4. To what extent does making Mrs. Nelson feel comfortable lead to a feeling of trust? 5. What can be done to help Mrs. Nelson gain some sense of control over the flow of information and enable her to begin coping? 6. How important is the timing between interactions so that Mrs. Nelson has some time to process the information while not letting her feel abandoned? 7. How would you characterize Mrs. Nelsons coping style and does it make a difference in how to think about helping her deal with the stressful news?

Theme 2: Uncertainty
Mrs. Nelson raises the question of survival with Dr. Bono. Her cancer is, probably, Stage IV ovarian cancer, which represents less than a five percent 5-year survival rate. The certainty of serious illness and the uncertainty of Mrs. Nelsons length and quality of life are emotionally painful aspects of her disease. Learning Objective K Reinforce that clinicians can discuss issues pertaining to serious illness and the uncertainty of length and quality of life while also offering hope and reassurance to the patient. Video Segments 1. Dr. Adams moves from certainty about the tumor to uncertainty about its exact origin, then quickly to telling Mrs. Nelson she doesnt have to worrya quick progression from diagnostic uncertainty to practical action. Note the prompt move to Were going to do something about it. 2. Dr. Bono brings up probability and odds, then shifts the conversation by moving to some realistic optimism: months of good times to look forward to. 3. Dr. Sanders uses phrases like all things point, and highly suggestive, and at the same time expresses comfort through body language, position, and touching. Note the difference between her communication style and that of Drs. Adams and Bono.
Discussion Points 1. What techniques (e.g., pacing, repetition, paraphrasing) clarify or emphasize the difficult facts being given to her? How does the physicians use of technical language help or hinder Mrs. Nelsons understanding of her situation? 2. Was there anything about the dynamic of Mrs. Nelsons conversation with Dr. Adams that discouraged her from asking him the same questions she asked Dr. Bono? 3. Both Drs. Adams and Bono try to alleviate Mrs. Nelsons distress by offering reassurance. How does Dr. Bonos honesty promote or interfere with reassurance and hope? How does that compare with Dr. Adams approach? 4. How well does each physician listen to Mrs. Nelson? 5. By beginning with and reinforcing the information that Mrs. Nelson conveys, does Dr. Bono increase her understanding of her ovarian cancer?

Theme 3: Family
After receiving bad news, patients with a life-threatening illness often rely heavily on the support and involvement of family and close friends. Caregivers often actively encourage and seek the involvement of the patients family from the beginning, including during the delivery of bad news. Learning Objective K Examine the role of the patients family and friends and how best to include the family when bad news is delivered to and received by the patient. Video Segments 1. Dr. Adams spoke with Mr. Nelson before telling Mrs. Nelson. This was based on a pre-operative agreement that he would talk to Mr. Nelson immediately after the operation, before Mrs. Nelson was fully awake. 2. Dr. Bono recognizes the importance of Mrs. Nelsons family. He sympathizes with her worry about Mr. Nelson. 3. Dr. Sanders encourages Mrs. Nelson to feel comfortable with her familys support. Mrs. Nelson seems more distressed about being a burden on her family than about her own personal situation. The thought of leaving them provokes real sadness. Discussion Points 1. Is it easier for Dr. Adams to deliver the bad news than it would have been for Mr. Nelson? 2. Consider how it might have affected Mrs. Nelsons reaction if Mr. Nelson had been present when the bad news was delivered. 3. How does Dr. Sanders approach compare with Dr. Adams? 4. In addition to the clinicians that you have already seen, who else should be involved in supporting Mrs. Nelsonrelatives, close friends, the hospital social service department, a cancer support group? How might this be decided? 5. What role should the physician play in helping to mobilize emotional and social support for Mrs. Nelson? 6. Compare and contrast the way the physicians approach family involvement.

Theme 4: Giving Advice
When given a distressing diagnosis, patients commonly ask their physicians what they would do in a similar situation. Drs. Bono and Sanders respond differently to Mrs. Nelsons question in this regard. Learning Objectives K Explore the different styles involved in giving advice to a patient. K Determine the relevant issues and values for the patient. Video Segments 1. Dr. Bono tells Mrs. Nelson up front what he would do if he were in her situation and why. 2. Dr. Sanders takes a different approach, implying she will tell Mrs. Nelson what she would do if she were facing this diagnosis, then changing the conversation to focus on Mrs. Nelson, her values, and what would be best for her. Discussion Points 1. Why does Mrs. Nelson raise the subject of her friends illness with Dr. Bono? 2. Do you think she would want to talk about this with Drs. Adams and Sanders as well? Why or why not? 3. What clues about her personal values does Mrs. Nelson share that would be useful in considering treatment options?
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4. From what you have seen so far, what treatment options do you think Mrs. Nelson will consider? 5. If she stays with Dr. Bono, what treatment is he likely to recommend? 6. Should Mrs. Nelson review other options as well? 7. Consider how the initial discussion of treatment was presented and framed by the physicians. 8. Presently, standard treatment involves debulking surgery and combination chemotherapy with paclitaxel and a platinum agent such as cisplatin or carboplatin. Is this the best option for Mrs. Nelson? Why or why not? 9. What would lead you to persuade Mrs. Nelson to consider a clinical trial or alternative therapy?

Theme 5: Personal Responsibility and Guilt
The news of an advanced stage of cancer is quite devastating to Mrs. Nelson. As she tries to make sense of her new reality, she needs support in order to cope. Learning Objective K Acknowledge and address the patients possible sense of personal responsibility for the illness, and any resultant guilt. Video Segments 1. Dr. Bono absolves Mrs. Nelson of responsibility and guilt for causing her predicament. 2. Dr. Sanders similarly reassures Mrs. Nelson that she is not responsible for this disease. She moves one step further to treatment. The issue of causation or personal responsibility comes into the conversation. Discussion Points 1. Does the knowledge that there was nothing she could have done to prevent the cancer help Mrs. Nelson cope? 2. How would this conversation have been different had there been an avoidable behavioral factor that caused the disease? 3. Although they cant meet every need, is there anything more that Drs. Bono and Sanders could do to give Mrs. Nelson the support that she needs? 4. Would it be worthwhile to explore the topic of responsibility and guilt further with Mrs. Nelson? 5. Are there important differences among the clinicians in their role of supporting Mrs. Nelson? 6. Cancer patients often find support groups helpful in coping with this kind of illness. How and when would you bring up this topic with Mrs. Nelson? 7. How might Dr. Sanders be feeling about this new diagnosis of advanced cancer? What would you think if she told Mrs. Nelson that she was sorry?
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Theme 6: Nonverbal Communication
As the clinicians interact with Mrs. Nelson, their nonverbal cues either hinder or help to convey a message of care and concern. Eye contact, tone of voice, body position, and the closeness or distance of the caregiver impact the patient. Learning Objective K Recognize that clinicians nonverbal cues communicate important information to the patient. Video Segments 1. Dr. Adams comes in with the chart, looks for the catheter, and ignores Mrs. Nelsons eye contact. At one point he looks away at a sensitive moment. Also note the tone of voice, the stance, and the pace of Dr. Adams conversation. 2. Dr. Sanders is positioned on an equal level with Mrs. Nelson. She pauses, her tone is modulated and soft, and she reaches out and touches Mrs. Nelson in a completely different way. Discussion Points 1. How does this affect the communication? 2. How comfortable does the patient appear? 3. How comfortable do the clinicians appear? 4. What does the handshake convey? 5. Does the frequency of eye contact suggest anything that was not explicitly said? 6. Does each clinicians voice tone and the speed of conversation either emphasize or contradict anything that was said? 7. Is the nonverbal communication appropriate in this situation? 8. How might a patient from a different background respond to some of the nonverbal cues?
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Theme 7: Goals
A discussion about treatment goals in this type of encounter can be quite complicated because they can range from just getting home or symptomatic relief to more longterm goals of enhancing quality of life and ultimately maximizing life expectancy. The often-overlapping costs and benefits of each further complicate discussing these goals. Learning Objectives K Understand the importance of discussing a treatment plan and its overall goals with the patient. K Recognize that the clinician must make an ongoing assessment of the patients capacity to fully understand and discuss the goals of the treatment plan. Video Segments 1. Dr. Adams moves quickly to announcing goals and treatments. 2. Dr. Bono approaches discussion of goals cautiously. He carefully states the avoidance of false hope. He wants and welcomes Mrs. Nelsons family in the discussion. There is little discussion at this point of what the actual goals of treatment might be. 3. Dr. Sanders, as the primary care physician, brings in a less technical approach to figuring out what should be done. Notice how this balances Drs. Bono and Adams. Discussion Points 1. At this early stage in Mrs. Nelsons treatment, does it help to make an explicit distinction between the treatment plan and her overall goals? 2. Is Mrs. Nelson ready to begin thinking about these issues? 3. What is Mrs. Nelsons capacity for understanding the implications of her new diagnosis? Compare how each physician begins to structure the conversation about treatment. 4. How does ensuring a concrete plan for follow-up help Mrs. Nelson cope with her diagnosis?
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Theme 8: Surprise
The unexpected discovery of Mrs. Nelsons advanced cancer makes dealing with bad news even more difficult for both her and the physicians. Dr. Adams faces a tough situation: even though he has met this patient before, he must tell Mrs. Nelson her diagnosis without knowing how she will handle the information or how she wants the information shared with her family. Learning Objective K Recognize that the element of surprise associated with an unexpected diagnosis has an impact on both the patient and the clinician. Video Segments 1. Dr. Adams brings up the topic of surprise after telling Mrs. Nelson that, regarding the hernia, everything was as expected. He moves quickly to diminishing the impact of the bad news surprise by taking the conversation to the therapeutic action. 2. Ms. Humphrey affirms that the surprise must have been a complete shock. She then moves quickly to complete her routine check of Mrs. Nelsons vital signs. 3. When Mrs. Nelson talks with Dr. Bono she has begun to process the surprise. She shows some adjustments in her goal-orientated thinking. Dr. Bono gives her some help, but not false reassurance. 4. Mrs. Nelson is angry about the cancer. She is moved to a new phase in understanding. Dr. Sanders retraces some of the previous encounters and how difficult it would have been to detect it earlier. Here the notion and feeling of surprise gets set in a broader context of unfortunate events. Discussion Points 1. Dr. Adams opts for giving Mrs. Nelson some good news first (the success of the hernia operation), and delays giving the bad news. Who does this approach make it easier for, Dr. Adams or Mrs. Nelson? 2. How could Dr. Adams have delivered the bad news differently? 3. How does the fact that Ms. Humphrey is unprepared for Mrs. Nelsons situation impact her encounter with the patient? 4. How does Dr. Bonos bringing up the treatment options soon after Mrs. Nelson learns of her diagnosis affect his encounter with her? 5. Does quickly moving to treatment options make Mrs. Nelson commit herself prematurely to chemotherapy?
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Theme 9: Taking Control
Mrs. Nelson has begun coping with her new diagnosis and starts thinking about her treatment options. While she clearly needs the support of her doctors, nurses, family, and friends, she also needs to decide what is best for her. The idea of shared decision making rests on the dual importance of professional knowledge and values as well as the patients knowledge and values. But Mrs. Nelsons story demonstrates how the abstract idea and requirements of shared decision making are difficult to implement. Learning Objective K Recognize the importance of the patients values and personal autonomy. Video Segments 1. During her conversation with Dr. Bono, Mrs. Nelson is beginning to think of implications and what she can do. Dr. Bono makes it clear that she has a choice. 2. Dr. Sanders emphasizes the you in this piece of conversation. Yet, at the same time, she assures Mrs. Nelson that shes going to be there to help. Notice the difference here between making Mrs. Nelson decide and helping her to decide. Discussion Points 1. Some patients are more passive and resist actively deciding while others automatically take control from the start. What is Mrs. Nelsons capacity? Can she take control without support? 2. If Mrs. Nelson relies on her husband or family to tell her what to do, does this pose a problem? 3. How could Mrs. Nelsons clinicians help her take control and decide what is truly best for her? 4. Physicians have a dual role: first, giving information about diagnosis and treatment and, at the same time, giving the hope and support needed to accept and get through treatment. Does this dual role impair Dr. Bonos objectivity? Does it threaten Mrs. Nelsons ability to decide for herself? 5. To what extent are the individual stories of ovarian cancer treatment, like that of Mrs. Nelsons friend, misleading or helpful? 6. Would it be useful for Mrs. Nelson to talk with other patients who are receiving or have completed treatment for ovarian cancer? 7. Second opinions can be beneficial in helping patients take control by giving other perspectives on an illness. Should Mrs. Nelson be encouraged to seek other opinions even if she doesnt mention this herself? 8. Patients are now using the Internet to learn more about their illness. Should Mrs. Nelson be encouraged or assisted in doing this?
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Theme 10: Leavings
Mrs. Nelson has already been given the unfortunate news, which drastically challenges her view of her future and raises many complex issues. In addition to the goals of caring and supporting Mrs. Nelson at this difficult time, the reality is that clinicians must also efficiently manage a busy schedule and negotiate boundaries with patients. Learning Objective K Understand that the method used to take leave of a patient can help determine the successful continuity of the patients care. Video Segments 1. Dr. Adams is in a hurry to get out. He mentions family and other specialists coming later on and departs abruptly. 2. Ms. Humphrey reassures Mrs. Nelson that her vital signs are normal and then quickly leaves. 3. Dr. Bono leaves on a pleasant note, grasping Mrs. Nelsons hand upon departure. 4. Dr. Sanders departure is supportive. She welcomes the involvement of Mrs. Nelsons family. Thus, while Dr. Sanders is leaving, others will be coming in to comfort Mrs. Nelson. Dr. Sanders specifically mentions the others who will be available to support Mrs. Nelson after she (Dr. Sanders) leaves.
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Discussion Points 1. How is the reality that clinicians must also efficiently manage a busy schedule and negotiate boundaries with patients illustrated in the leaving of each clinician? 2. What techniques do Drs. Bono and Sanders use to end the conversation in a timely fashion while not appearing abrupt or leaving Mrs. Nelson with a feeling of abandonment? 3. Was the information given tailored to meet Mrs. Nelsons immediate needs? 4. Sometimes patients have bottled-up concerns that for a variety of reasons are raised during the last minutes of a conversation. How do you think each clinician would have handled this with Mrs. Nelson? 5. What is the effect of Drs. Bono and Sanders making a point of saying when they will be back to talk with Mrs. Nelson again? Would it have been helpful if Dr. Adams had also done this? 6. How well does each clinician lay out a short-term plan so that Mrs. Nelson can know what to expect in the near future?

Suggested Teaching Strategies
K K
Distribute Module I to all group participants in advance of the session. Ask participants to view the introduction and the four video segments within the section Mrs. Nelsons Story. While viewing Mrs. Nelsons Story, ask participants to consider the following: l From Mrs. Nelsons perspective, how well did the caregivers function? l What went well? What went poorly? l Considering the overall strategy of delivering bad news, could the professionals have helped Mrs. Nelson by giving the news differently? When the group convenes, the facilitator can ask several open-ended questions aimed at initiating a whole-group discussion of the issues raised within Module I. Opening questions should strive to stimulate discussion and encourage continued exploration. Cast question nets out to see what they bring in. This type of exploration typically uncovers the specific considerations, issues, and concerns of importance to the group. These can become the major themes for closer, more detailed discussion. Examples of opening questions might include those listed above, and the following: l What happened in the story? l What do you make of what you viewed? l Can you identify any issues? Why is that issue of importance? l What would you have done differently? How? The group session is likely to center on the key themes presented in Module I. Whether the groups discussion naturally gravitates towards these, or whether the topic(s) are of particular relevance to them or the setting, the module themes can offer an effective approach to focusing discussion. Refer to the discussion points listed for each theme.
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Introduction
Advance care planning is an essential and valuable process in caring for any patient, but is especially helpful for those nearing the end of life. Patients have the legal and ethical right to guide the course of their own treatment. While we might assume that everyone prefers to get the best health care possible, what is best from the viewpoint of any one patient may be difficult to ascertain once theyve become unable to communicate and decide for themselves. Two people facing the same clinical circumstances, including probabilities of survival, recovery, and discomfort, may make very different, yet reasonable, decisions based on their personal goals and values. Advances in medical technology have increased the possibilities for controlling life and death, but they have also created complexities. These are often emotionally charged decisions which health professionals and families must confront and negotiate during a time of stress. Through use of advance care planning, health professionals have an opportunity to help prepare patients and families and build trust in the clinician-patient relationship, thus potentially reducing future conflict and delays in end-of-life care decisions.
Learning Objectives
K K
Emphasize the importance of advance care planning in caring for a patient. Examine the reasons why patients should be autonomous decision makers for their care.
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Mrs. Nelsons Story

It has been four months since Mrs. Nelson completed a full course of combination chemotherapy to treat her advanced ovarian cancer. Presently, she is feeling relatively well and her symptoms have been tolerable. At this point, Dr. Sanders, who has been her primary care physician for several years, has asked both Mrs. Nelson and her husband to meet in her office to discuss advance care planning.
Themes
Advance care planning is complex, especially in the context of a life-threatening illness. In order to examine and understand the advantages and potential problems of this process, Module II is divided into the following seven themes, described below in terms of the associated objectives and discussion points.
Module II Themes
1) Structuring the Discussion .......... 19 2) Health Care Proxy and Advance Directives .................. 20 3) Framing with Hope .................... 21 4) Goals and Values ....................... 22 5) Supporting the Proxy .................. 23 6) Trust ........................................ 24 7) Listening and Responding ........... 25

Theme 1: Structuring the Discussion
Meaningful discussion of advance care planning requires structuring discussions in a way that provides the necessary information, elicits the patients values, avoids undue anxiety, and conveys that the goal is to follow the patients wishes. Dr. Sanders begins the conversation with Mrs. Nelson and her husband during a routine office visit by emphasizing that they can use multiple visits to complete the discussion. She tries to reduce the Nelsons anxiety by telling them this is something she tries to do with all of her patients. In this conversation, Dr. Sanders focuses on the use of a health care proxy with little or no mention of possible circumstances, specific treatment options, or probabilities of recovery. Structuring the discussion in this way allows Mrs. Nelson to broadly consider planning for her future, including the roles of her relationships with her husband and physicians. However, this focus fails to elicit her specific wishes in a variety of circumstances where Mrs. Nelson is incapacitated. Learning Objectives K Recognize the benefits of structuring discussions of advance care planning. K Understand the two levels of discussion of advance care planning: general plans and specific situations. Video Segments 1. Dr. Sanders presents the idea of a proxy or directive in a very general way, attempting to assure Mrs. Nelson that she is not reacting to a specific item of concern. 2. The discussion is oriented around planning for the future, and around helping Mrs. Nelson express herself and get involved in the discussion. 3. Dr. Sanders brings in the reality of a serious illness and also indicates the desirability of extending the discussion beyond the office: Mrs. Nelson should talk about this with her children and loved ones. 4. The discussion ends on a positive note and with agreement to think about it further, to review information packets, and to continue the discussion at another time. Discussion Points 1. To what extent are these two parts of advance care planningmaking general plans vs. anticipating specific situationsnecessary for helping Mrs. Nelson express her preferences for the future? 2. Does it make a difference which part is discussed first? 3. Mrs. Nelson describes her friends suffering from ovarian cancer. Should Dr. Sanders have explored this further, possibly by asking Mrs. Nelson more specifically what she found distressing about her friends ordeal? 4. Is it helpful for physicians to ask patients to talk about their experiences with death, dying, and aggressive treatment? 5. Overall, notice what the Nelsons and Dr. Sanders accomplish during this relatively short meeting. What would you anticipate they would discuss in their next conversation?
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Theme 2: Health Care Proxy and Advance Directives
Advance care planning is a process of discussion, reflection, and communication of preferences for end-of-life care that precedes and sometimes results in the creation of an advance directive. This process helps ensure that a patients wishes will be understood and actually respected. A form to designate a health care proxy, also known as a durable power of attorney, is legally recognized in all states. This official record can be especially instrumental in cases where family conflict is anticipated, or if a person wishes to select someone other than his or her closest relative to be the proxy. A proxy can provide good substitute judgment for the patient if the proxys decisions are based on knowledge of the patients wishes. A written advance directive, or living will, refers to specific instructions, sometimes in the form of a checklist, for a patients physician when the patient is incapacitated. This advance directive has the advantage of providing some written direction, straight from the patient. Because Mrs. Nelson cannot foresee all of the possible medical situations that she might face and her wishes will still need to be interpreted in a specific circumstance, a trusted health care proxy like Mr. Nelson can be important. Learning Objectives K Understand the distinction between advance care planning, advance directive, and health care proxy. K Identify the advantages of designating a health care proxy versus a written advance directive. Video Segments 1. Dr. Sanders makes a distinction between a health care proxy and an advance directive. 2. Dr. Sanders expands on Mrs. Nelsons analogy to wills by comparing a health care proxy to future planning at a time of incapacity. 3. Dr. Sanders indicates how helpful advance care planning will be for Mr. Nelson. Discussion Points 1. How well does Dr. Sanders engage Mrs. and Mr. Nelson in advance care planning? 2. What does Dr. Sanders do to facilitate the creation of a health care proxy? 3. How hard should Dr. Sanders work with Mrs. Nelson to put her wishes in writing?
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Theme 3: Framing with Hope
Framing involves the psychological factors influencing how Mrs. Nelson perceives advance care planning and her future circumstances. This is a potentially difficult issue for the Nelsons, considering that she was recently diagnosed with advanced cancer. Indeed, Mrs. Nelson immediately sees a negative side to discussing advance directives and compares this to her uncomfortable experience writing a will. Some patients may even suspect that the motive is to reduce the amount of medical care they will receive. Consider not only Dr. Sanders explanation of the purpose of the discussion, but the way she shows interest in Mrs. Nelsons welfare and her communication style. Throughout the conversation Dr. Sanders expresses hope in a variety of ways without stating that there is hope for a cure or for a very long life. Notice how Dr. Sanders approach to framing is likely to strengthen the physician-patient relationship. Learning Objective K Recognize methods of preserving hope while conducting advance care planning with a patient. Video Segments 1. Dr. Sanders indicates that advance care planning is a good, positive thing for everyone to do, and that shes trying to conduct these discussions with all of her patients. 2. Dr. Sanders indicates how this process of advance care planning can support Mr. Nelson. Thus, Mrs. Nelson, by going through this, will be able to relieve some of the burden from her husband. Discussion Points 1. How does Dr. Sanders frame advance care planning in a positive way? 2. Does she put enough emphasis on her commitment to protect Mrs. Nelson from both over- and under- treatment? 3. How does this conversation seem to effect both Mrs. and Mr. Nelson? 4. In what ways does Dr. Sanders give the Nelsons hope? 5. How does Dr. Sanders approach affect the likelihood of completing an advance care plan as well as the content or wishes expressed in the plan? 6. In this conversation Dr. Sanders does not discuss future treatments. Would it have been helpful for Mrs. Nelson to hear about some of the more positive options for treatment and comfort care?
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Theme 4: Goals and Values
One approach to advance care planning focuses on understanding the patients goals and values. This involves asking about priorities, what matters most in a patients life, and talking about the relative importance of the length and quality of life. An advantage of this approach is that it can be a comfortable way to engage patients in advance care planning because it helps them realize that the physician is interested in what matters to them and that this will become the basis for evaluating the desirability of specific treatment options. The problem with the goals and values approach to advance care planning is that it lacks the specificity of knowing the patients treatment preferences in various settings. Learning Objective K Recognize that uncovering a patients goals and values during discussion of advance care planning will help to form treatment options and preferences. Video Segments 1. Two things happen here. Dr. Sanders links this discussion to future plans and then Mrs. Nelson remarks about her values in comparison with those of a friend who died from ovarian cancer. 2. The notion of transferring the decision from the patient to her proxy is amplified, and the idea that Mr. Nelson will be able to act in a way that preserves Mrs. Nelsons goals and values is enhanced.
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3. Mrs. Nelson spontaneously indicates her love for and desire to see her grandchild. Dr. Sanders embraces this value and indicates how the medical team can help preserve it. Discussion Points 1. Mrs. Nelson tells Dr. Sanders about some of the things that are important to her. How would you clarify these values further? 2. How would you connect these values with treatment preferences in the future? 3. Would it be helpful for Dr. Sanders to use Mrs. Nelsons example of her friend with ovarian cancer to find out more specifically what she would want or want to avoid? 4. Could Mrs. Nelsons desire to see her grandson grow up be used to find out how Mrs. Nelson would balance aggressive treatment versus comfort care? 5. What is the relative importance of these patient-oriented examples, versus asking about items like antibiotics, feeding tubes, or ventilators? 6. Some patients refuse to talk about the circumstances of dying or advance care planning in any direct way. This can be for cultural reasons or a fear of being manipulated to forgo expensive treatment options. To what extent can knowledge of such a patients personal goals or values play a role in treatment decisions if he or she becomes incapacitated?

Theme 5: Supporting the Proxy
The way Dr. Sanders begins Mrs. Nelsons advance care planning emphasizes the importance of including the proxy. In some cases it would be better to start the conversation with the patient alone and then bring the proxy in at a later date. In either case, involving the proxy is crucial. Dr. Sanders tries to make both Mr. and Mrs. Nelson comfortable with this kind of discussion and urges them to continue the conversation later. Talking about the circumstances in which Mr. Nelson becomes Mrs. Nelsons proxy is naturally unpleasant and hence something to avoid. By supporting Mr. Nelson, Dr. Sanders may make it more comfortable and easier for the conversation to continue. Dr. Sanders draws attention to the fact that Mr. Nelson will not be alone when he acts as a proxy. Others will be there to support him. Another option for advance care planning is to develop a written document, or living will, specifying Mrs. Nelsons wishes. Learning Objective K Recognize that uncovering a patients goals and values during discussion of advance care planning will help to form treatment options and preferences. Video Segments 1. Mrs. Nelson indicates her feeling for her husband as well as her desire to have him be engaged as a decision maker. 2. Dr. Sanders indicates how she and the others will help support Mr. Nelson if decisions need to be made. 3. In case Dr. Sanders is away, the hospital health care information systems can make sure that caregivers will have a record of the advance directives existence. Discussion Points 1. What does Dr. Sanders do, both directly and indirectly, to make it easier for the Nelsons to continue the conversation and make Mr. Nelson an effective proxy? 2. Is this conversation likely to continue and include other family members? 3. To what extent would a living will help Mr. Nelson feel more comfortable with the current discussion and make him more comfortable later on with his role as a proxy? 4. If he has reservations about Mrs. Nelsons wishes, would disagreement make his role as a proxy easier or more difficult? 5. Does this diffusion of responsibility threaten his capacity to be the decision maker or does it make it less frightening and more acceptable? 6. How would you arrange a system of care that is likely to be able to follow through on Dr. Sanders commitment to support Mr. Nelson?
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Theme 6: Trust
Advance care planning makes patients and families confront the inevitable circumstances of death and loss in the future. In Mrs. Nelsons case, this occurs at a time when she is already coping with a life-threatening illness. Individuals as well as a system of care that can be trusted may aid facing these awful difficulties. While the circumstances of putting advance care planning into effect is uncommon for any single individual, it is extremely important as a defining event in a persons life. Similar to life insurance, it is not something a person necessarily wants or plans to use, but something one needs to rely on to be there when the time comes. Learning Objective K Explore specific factors that may contribute to building trust between patient and provider. Video Segments 1. Mrs. Nelson uses the word trust to indicate both hopefulness as well as reliance. Dr. Sanders responds in the affirmative. One can imagine that the discussion helps embody the idea of trust on both the personal and institutional level. 2. Dr. Sanders promises the Nelsons that not only will the advance directive document be there, but that she will be there as well. Dr. Sanders responds to Mrs. Nelsons what if query by ensuring that there are ways of transferring this confidence and trust.
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3. Dr. Sanders reaffirms her commitment to assisting Mr. Nelson and to helping Mrs. Nelson realize her values and goals. Discussion Points 1. What does this discussion do to foster Mrs. Nelsons trust? 2. To what extent does Mrs. Nelsons trust depend on Dr. Sanders? 3. To what extent does Mrs. Nelsons trust depend on a hospital or a system of care in which Dr. Sanders practices? 4. What can be done to ensure that Mrs. Nelsons advance care planning will be put into effect when necessary? 5. How does advance care planning impact resource allocation of physician time as well as health care resources? 6. How might the following contribute to Mrs. Nelsons trust?
G
G G G
The honest acknowledgment by Dr. Sanders of the possibility of her not being there at the time. The importance of Dr. Sanders as a specific person, not just a doctor. The importance of other health care professionals being present. The existence of an information system that contains and transports Mrs. Nelsons proxy directives.

Theme 7: Listening and Responding
Communication is crucial in advance care planning. Dr. Sanders needs to deliver information and understand Mrs. Nelson. Equally as important, she needs to help Mr. Nelson understand how to put Mrs. Nelsons wishes or values into decisions in the future. This can be described as counseling. Learning Objective K Recognize that active listening and counseling skills are critical to effective communication in advance care planning discussions. Video Segments 1. Dr. Sanders begins by addressing a recent event, the Nelsons vacation, and then begins with a brief discussion and a question. 2. A crucial part of this discussion has to do with Dr. Sanders response to Mrs. Nelsons analogy, Its like wills. There is a subtle but important pause that lets Mrs. Nelson control some of the conversation. 3. Here Dr. Sanders responds to the transfer of decision making to Mr. Nelson. Thus, listening to Mrs. Nelson connects directly to the capacity to listen and respond to Mr. Nelson. Discussion Points 1. Does the fact that Dr. Sanders does most of the talking and less listening seem appropriate or does this interfere with understanding Mrs. Nelson and the goals of counseling? 2. Is it a reasonable strategy to have an initial information delivery session followed by a later listening, understanding, and counseling session? 3. What could Dr. Sanders do to make the follow-up session more meaningful? 4. How does Dr. Sanders actively listen to the Nelsons? 5. Are there other ways to be an active listener? 6. Could it help Mrs. Nelson to talk about her values if Dr. Sanders shared stories about other patients? Or might this make Mrs. Nelson feel less central to Dr. Sanders concerns?
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K K
Distribute Module II to all group participants in advance of the session. Ask participants to view the introduction and the video within the section Mrs. Nelsons Story. While viewing Mrs. Nelsons Story, ask participants to consider the following: l From Mrs. Nelsons perspective, how well did Dr. Sanders function? l What went well? What went poorly? l Considering the overall strategy of advance care planning, are there aspects that you would handle differently?
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K
When the group convenes, the facilitator can ask several open-ended questions aimed at initiating a whole-group discussion of the issues raised within Module II. Opening questions should strive to stimulate discussion and encourage continued exploration. Cast question nets out to see what they bring in. This type of exploration typically uncovers the specific considerations, issues, and concerns of importance to the group. These can become the major themes for closer, more detailed discussion. Examples of opening questions might include those listed above, and the following: l What happened in the story? l What is your impression of what you viewed? l Can you identify any issues? Why is that issue of importance? l As a professional, what would you have done differently? Why? The group session is likely to center on the key themes presented in Module II. Whether the groups discussion naturally gravitates towards these, or whether the topic(s) are of particular relevance to them or the setting, the module themes can offer an effective approach to focusing discussion. Refer to the discussion points listed for each theme.

Introduction
Informed consent, like giving bad news, is a frequent and essential process in caring for patients in end-of-life circumstances. Informed consent, as documented by the signing of a consent form before invasive therapeutic and diagnostic procedures, is an ethical requirement, not an option. Medical professionals are legally and morally responsible for disclosing information and allowing patients to voluntarily and explicitly consent to or forgo treatment.
Learning Objective
K
Emphasize that informed consent is a process that includes involving strategies for the support of the patient during decision making.
Mrs. Nelsons Story

According to Mrs. Nelson, this phase of her story started when I began a life of medicine 14 months earlier, after her surgeon unexpectedly found Stage IV ovarian cancer during an operation for a hiatal hernia. After experiencing sudden and severe abdominal cramping with nausea and vomiting, she presented to the emergency department late Friday night. It is now Saturday morning. Her X-rays show a pattern typical of a high grade, small bowel obstruction. Her vital signs and other lab data are normal. Her surgeon, Dr. Adams, arrives four hours after Mrs. Nelson appeared in the emergency department. Dr. Adams has examined Mrs. Nelson, reviewed the X-rays with the radiologist, and is convinced that she has a mechanical obstruction, for which surgery is the standard treatment. At this point, an informed consent conversation occurs between Mrs. Nelson and Dr. Adams.
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Themes
In order to understand informed consent and strategies for supporting Mrs. Nelson during decision making, the story is divided into the following eight themes, described below in terms of the objective and discussion points associated with each. Note that the first two of the four video segments illustrating Theme 5 (nonverbal communication) are intentionally presented without sound.
Module III Themes

1) 2) 3) 4) 5) 6) 7) 8) Process vs. Event ....................... 28 Pain and Suffering ..................... 29 Uncertainty and Hope................. 30 Framing Risks ........................... 31 Nonverbal Communication ......... 32 Suspending DNR ....................... 33 Trust ........................................ 34 Supported Decision Making ........ 35

Theme 1: Process vs. Event
Informed consent is best viewed as a process requiring a dialog between physician and patient in decision making that leads to understanding and clarification of expectations. A decision occurs as a result of this process. Emergencies are notoriously difficult for this kind of process to occur. Here, Dr. Adams presents Mrs. Nelson with two decisions: the exploratory laparotomy and the suspension of her DNR order (Do Not Resuscitate). Notice there is little discussion of alternatives. The pressure of the emergency and the potential adverse impact on Mrs. Nelson place limits on the thoroughness of the discussion. Learning Objective K Recognize that the specific circumstances of a medical event may determine how to structure the informed consent process. Video Segments 1. Dr. Adams begins in the mode of getting consent to a decision already made based on medical judgment or the best standard of care. 2. Dr. Adams listens to Mrs. Nelsons desires and connects with the previous conversation, an ongoing relationship. 3. Agreement is reached. Trust, at least tentatively, is established. Note the handshake.
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Discussion Points 1. Consider how each decision was made. Has there been an effective process in this situation? 2. What are Mrs. Nelsons reactions and indications of her level of understanding? Does she understand, know what to expect, and consent to the operation? 3. Does Mrs. Nelson really have a choice? 4. What harm might have occurred if Dr. Adams detailed other options? 5. Might the presentation of other options confuse or frighten Mrs. Nelson, resulting in delay? Would the consent process have been improved if other options had been discussed?

Theme 2: Pain and Suffering
Attending to pain and suffering is important, especially for someone with a life-threatening illness. Trust is one factor that helps provide comfort and relieve suffering. Distinguishing between pain and suffering in this situation is not always simple. Learning Objective K Explore the issues surrounding pain and suffering that influence decision making within the informed consent process. Video Segments 1. Mrs. Nelsons pain can now be thoroughly treated. 2. Mrs. Nelsons physical pain has been relieved pharmacologically, but her emotional distress persists. Note her facial expressions toward the end of this vignette. 3. Note Mrs. Nelsons mention of humility, vomiting feces, and her anguish over anticipating a prolonged, miserable death. 4. Mrs. Nelson finds some calmness, comfort, peace, and relief with the trust she can place in Dr. Adams. Discussion Points 1. Does the analgesic relieve both Mrs. Nelsons pain and her suffering? What helps relieve Mrs. Nelsons suffering? 2. What level of trust exists between Dr. Adams and Mrs. Nelson? What fosters trust in this situation? Should anyone else be involved? 3. Informed consent requires Mrs. Nelsons competency. Is her cognitive capacity diminished more by pain or by an analgesic? 4. Is the usual practice of holding analgesics until after signing a consent form best for decision making in a situation like this? 5. This is a hard discussion for both Dr. Adams and Mrs. Nelson. The challenge for Dr. Adams is both to respond to Mrs. Nelsons current anguish and to anticipate her suffering later on. Does anything that Dr. Adams says help prevent future suffering? If so, what is the effect on Mrs. Nelson now?
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Theme 3: Uncertainty and Hope
Although Dr. Adams cannot predict with certainty the outcomes of surgery or the course of Mrs. Nelsons cancer, he can help her cope with the uncertainty. Understanding possible outcomes often helps patients cope. In talking about outcomes, Dr. Adams tries to be both hopeful and honest. Some of the risks Dr. Adams chooses to present are unlikely to happen, but if they do, then Mrs. Nelson will feel less betrayed. Discussing these risks with her makes the unlikely outcomes more concrete, less undefined. At the same time, it prepares Mrs. Nelson for her future care and needs. Learning Objective K Review methods for assisting patients to cope with uncertainty. Video Segments 1. Uncertainty connects with fear of possible cancer, but also allows room for hope for something simple. Note how Mrs. Nelson focuses on the hope. 2. Dr. Adams goes into great detail around an unlikely, but horrible possibility. Note Mrs. Nelsons facial expression and distress. 3. Mrs. Nelsons sense of hope improves dramatically when Dr. Adams can reconnect her with past enjoyments. Continuity, a previous relationship, helps promote comfort and a positive attitude.
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Discussion Points 1. Does Dr. Adams way of describing possible adverse outcomes help Mrs. Nelson? 2. Would Mrs. Nelson have been helped or distressed by a longer list or more detail about possible adverse outcomes? 3. How does the balance between hope and honesty influence both Mrs. Nelsons expectations and her coping? 4. How are Mrs. Nelsons previous expectations likely to affect her ability to cope with the current situation?

Theme 4: Framing Risks
Framing concerns the psychological factors influencing a decision that are separate from the actual quantitative and objective content of the decision. Setting up a decision in a certain way can determine the choice. In this case, for Dr. Adams, the decision to go ahead with surgery is clear-cut, based on standard medical practice and Mrs. Nelsons clinical picture, and he frames the risks of surgery in a way that persuades Mrs. Nelson to consent. Because framing is unavoidable, it creates problems for informed consent. The choice of descriptive terms, positive or negative spin, and placing emphasis on some risks but not others can influence the outcome of the decision-making process. Learning Objective K Examine the various ways in which risks are presented to the patient, and how this can influence the patients decision making. Video Segments 1. Dr. Adams begins with what to expect, and then spends a lot of time presenting three highly undesirable, but unlikely possibilities. 2. Dr. Adams expresses an opinion on the probabilities. Discussion Points 1. How does the amount of time spent discussing these details affect Mrs. Nelson? 2. Dr. Adams frames the risks of surgery in a way that persuades Mrs. Nelson to consent. Are there ways to avoid undue bias and to respect Mrs. Nelsons autonomy? 3. Does Dr. Adams do anything to mitigate the effects of framing? 4. What impact would fairness in framing have on the long-term relationship between Dr. Adams and Mrs. Nelson?
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Theme 5: Nonverbal Communication
In this illustration of nonverbal communication, you are presented with four video segments. The first two segments are intentionally presented without sound. Pay close attention to both Dr. Adams and Mrs. Nelson. A common source of patient dissatisfaction is when patients feel that they have not been heard and understood. As you explore the third and fourth video segments, consider how listening involves more than silence. When assessing this, notice not only what each person says but also how he or she says it. Compare their use of voice inflection and consider the meaning of this interaction. Learning Objective K Recognize the ways in which patients and providers communicate nonverbally. Video Segments 1. Dr. Adams moves from a standing position to sit down at the patients bedside. 2. Mrs. Nelson communicates with head motion, facial expression, and hand positioning. Dr. Adams intermittently makes eye contact, communicates with his hand, and leans forward slightly toward Mrs. Nelson. 3. Mrs. Nelson communicates in part by her tone of voice, and as much through head and hand motion as by her words. Dr. Adams signifies agreement and sympathy with words like right and yeah.
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4. Mrs. Nelson expresses her anxiety and fear by rubbing her stomach and turning her head when Dr. Adams presents some of the awful possibilities. Discussion Points 1. What are some of the intentional and non-intentional ways that both Dr. Adams and Mrs. Nelson convey how they are thinking and feeling? 2. What is revealed in their use of eye contact, body position, hand gestures, facial expressions, and touching? 3. Would you expect the meaning or methods of nonverbal communication to change if there were other differences in race, culture, economic class, or gender? 4. Is Dr. Adams listening to Mrs. Nelson? How can you tell? 5. How well does Dr. Adams acknowledge and respond to Mrs. Nelsons concerns? What impact does this have on Mrs. Nelson?

Theme 6: Suspending DNR
In addition to consenting to surgery, Dr. Adams asks Mrs. Nelson to suspend her DNR (Do Not Resuscitate) order. Mrs. Nelsons health advance directive was created with her primary care physician, Dr. Sanders. Her DNR order was given without specifying circumstances and without addressing the possibility of surgery. Learning Objective K Demonstrate the clinicians reasoning for the suspension of the DNR order during surgery. Video Segments 1. Because of the previous DNR order, Dr. Adams discusses aspects of resuscitation in some detail. This is a complicated, common, distressing conversation. Note Mrs. Nelsons distress and possible confusion. Note how the question of trust comes up. Mrs. Nelson wants to talk to her husband/family and to her doctor. 2. Mrs. Nelson moves through the distress to a sense of comfort, perhaps due to having had a chance to express her wishes. Trust depends as much on Dr. Adams knowing Mrs. Nelsons wishes as it does on Mrs. Nelson knowing that Dr. Adams will do what is medically best. Discussion Points 1. Dr. Adams asks Mrs. Nelson to suspend her DNR order. Why is this important? 2. Does Mrs. Nelson change her mind about resuscitation, or does she just make her wishes more specific for the current circumstances? 3. What does this mean for reverting back to the status of no resuscitation? 4. How does Dr. Adams prior communication with Mrs. Nelsons other caregivers improve this discussion and the likelihood of her wishes being respected?
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Theme 7: Trust
Dr. Adams encourages Mrs. Nelsons trust by promising to do things that would help her if she were found to have terminal cancer. Even though he does not agree to the extreme of active killing, he reassures her that he understands and will follow her wishes as far as possible. Some people believe that a contract best describes the agreement between Mrs. Nelson and Dr. Adams, and that this is different from a fiduciary, trusting relationship. Promoting Mrs. Nelsons trust depends not only on trusting Dr. Adams, but also on trusting a system and team of providers to act on the basis of her wishes. Emergency physicians typically have no prior relationship with their patients, and patients often arrive in crisis. Thus, the patients trust is based on institutional and professional assurances rather than on a personal acquaintance. Learning Objective K Examine the various levels of trustfrom the individual provider to the health care institutionessential to the informed consent process. Video Segments 1. Mrs. Nelson articulates the need for trust in this circumstance. Dr. Adams tries to articulate the boundaries of acceptable medical practice. Mrs. Nelson then wants more reassurance from others: her husband and her doctor. Note the need for a network or multiple input for trust.
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2. Mrs. Nelson is greatly distressed by the possibility of a poor prognosis. She wants some assurance that she will be able to maintain her sense of dignity and self-respect. The clip ends with a handshake. Discussion Points 1. What is the difference between a relationship built on a contract versus one built on trust? Are they mutually exclusive? 2. To what extent does Mrs. Nelsons trust depend on her relationship with her primary care physician, Dr. Sanders, and others participating in her care? 3. What can an emergency physician do to promote Mrs. Nelsons trust? 4. Given that in an emergency there is less time to deliberate and a presumption for prompt action, is there anything that Dr. Adams or the primary care physician could have done to prepare Mrs. Nelson? 5. How does the handshake compare with signing a form or documenting wishes in a record?

Theme 8: Supported Decision Making
Life-threatening emergencies typically create varying levels of psychological distress, which are greater than those found in an office or inpatient setting. Mrs. Nelsons current situation presents as an acute illness, with the need for urgent or emergency attention or intervention. Because of the unexpectedness of the situation, the need for a prompt decision, and Mrs. Nelsons increased vulnerability, full-scale deliberation is impossible. Yet patients like Mrs. Nelson can still decide what will be done for them. One way to overcome these obstacles and still respect patient-centered choice is to engage Mrs. Nelson in the decision-making process but also relieve some of the burden of completely autonomous choice. This approach can be described as supported decision making. A crucial part of decision making for patients in these circumstances involves providing sufficient support, thus enabling them to have their wishes carried out. This support will vary. In some cases strong reassurance or paternalism might be needed. In other cases there can be more exploration of alternatives. The core idea here is still to make the patients values or voice be the determining factor. Learning Objectives K Identify the components of supported, patient-centered decision making. K Differentiate between paternalistic versus supported decision making. Video Segments 1. Dr. Adams informs Mrs. Nelson about the X-ray findings, then moves directly to discussion of what to do about it. 2. Dr. Adams discusses details of the possibility of more extensive cancer and what might go wrong. 3. Dr. Adams helps Mrs. Nelson recall the positive, pleasurable side of her previous treatment and instills some optimism and support for the current situation. 4. Dr. Adams reinforces that Mrs. Nelsons wishes will be followed to the extent possible. Mrs. Nelson looks for additional support from her husband and family. 5. Dr. Adams describes how Mrs. Nelsons wishes will be taken into account, and Mrs. Nelson feels confident enough that putting her wishes in his orders will mean that they will be followed. Discussion Points 1. To what extent does supported decision making happen with Mrs. Nelson? 2. Has Mrs. Nelson been coerced into accepting the operation? 3. Has she been forced to make a decision when bowel obstruction, the need for surgery, and the likelihood of recurrence of her ovarian cancer overwhelm her?
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K K
Distribute Module III to all group participants in advance of the session. Ask participants to view the introduction and the video within the section Mrs. Nelsons Story. While viewing Mrs. Nelsons Story, ask participants to consider the following: l l l l From Mrs. Nelsons perspective, how well did Dr. Adams function? What went well? What went poorly? Notice how the conversation begins and ends. Reflect on how Mrs. Nelson and Dr. Adams make you feel.
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K
When the group convenes, the facilitator can ask several open-ended questions aimed at initiating a whole-group discussion of the issues raised within Module III. Opening questions should strive to stimulate discussion and encourage continued exploration. Cast question nets out to see what they bring in. This type of exploration typically uncovers the specific considerations, issues, and concerns of importance to the group. These can become the major themes for closer, more detailed discussion. Examples of opening questions might include those listed above, and the following: l What happened in the story? l What do you make of what you viewed? l Can you identify any issues? Why is that issue of importance? l As a professional, what would you have done differently? Why? How? The group session is likely to center on the key themes presented in Module III. Whether the groups discussion naturally gravitates towards these, or whether the topic(s) are of particular relevance to them or the setting, the module themes can offer an effective approach to focusing discussion. Refer to the discussion points listed for each theme.

Introduction
Withdrawing treatment is a momentous event in the course of end-of-life care, but it is also becoming more common. The final actions are often preceded by difficult decisions that arise when caregivers, patients, and their families are confronted with limited and unpleasant options.
Learning Objective
Investigate the difficult decisions and situations surrounding the withdrawal of life-sustaining care.
Mrs. Nelsons Story

Mrs. Nelson is now unconscious in the intensive care unit and completely unable to communicate. The intensivist, Dr. White, begins by meeting with Dr. Adams and the anesthesiologist, Dr. Concepcion, to discuss the unfortunate surgical findings, the adverse event, the prognosis, Mrs. Nelsons wishes, and treatment decisions. Over the course of six days, Mrs. Nelsons physicians, nurse, and family face unexpected decisions and conflict. There are two family meetings with Mrs. Nelsons husband and their daughter to decide whether and how Mrs. Nelson would be allowed to die by withdrawing life-sustaining treatment. Different approaches are used, including an ethics consultation to help deliberate and manage this difficult situation.
Themes
To compare and contrast segments of Mrs. Nelsons story, Module IVs eight themes are described below in terms of the objectives and discussion points associated with each.
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Module IV Themes
1) 2) 3) 4) 5) 6) 7) Understanding the Prognosis ....... 38 Deliberative Decision Making ..... 39 Respecting Wishes ..................... 40 Managing Conflict ..................... 41 Mistake or Complication? ........... 42 Defining Comfort ...................... 43 Discussing Withdrawal of Life-support......................... 44 8) Assisting Dying in the ICU ......... 45

Theme 1: Understanding the Prognosis
Helping Mrs. Nelsons family understand her situation involves both determining the prognosis of her ovarian cancer, her pneumonia, and respiratory failure as well as interpreting or relating the probabilities specific to Mrs. Nelson. The caregivers in this situation use an intuitive approach in estimating Mrs. Nelsons prognosis, based on their experience and a time trial on a ventilator. Going from a prognosis to its significance or implication for decision making often takes time and involves viewing the estimates from different perspectives. Dr. Concepcion and Mrs. Nelsons family have some doubt and want to be sure recovery is impossible. Dr. White and Ms. Grady feel certain that Mrs. Nelson will not survive. Dr. Forrow translates the prognosis into phrases like unlikely to recover or could not conceive, have never seen anyone like this recover. Another aspect of interpreting a prognosis involves connecting separate conditions like age, recurrence of the ovarian cancer, and respiratory failure, which occur simultaneously in the same patient. Learning Objective K Recognize that understanding a patients prognosis involves both determining the prognosis and interpreting it for the specific situation. Video Segments 1. The intensivist adds a note of objectivity and reality. The anesthesiologist, feeling more responsible for the adverse event, presents her view. 2. Dr. White outlines a plan, setting up some boundaries for a trial. 3. Dr. White presents the facts, followed by the family desperately looking for hope. Dr. White immediately counters their optimism with a negative, realistic portrayal. 4. Dr. White demonstrates relativising the prognosis, using language like impossible as relative to the circumstance or situation. He suggests that he would be more optimistic in another circumstance, such as with a 20-year-old patient. Discussion Points 1. Would a numerical likelihood of surviving six months, derived from a system (like APACHE III) have more objectivity and meaning for Mrs. Nelsons caregivers? 2. Would it have more meaning than a professional estimate for Mrs. Nelsons family? 3. How else could one approach determining as well as interpreting the prognosis? 4. Is Dr. Whites and Ms. Gradys certainty likely to be influenced by factors like the need to convince Mrs. Nelsons family about the prognosis? 5. To what extent is Dr. Forrows translation from numerical to common phrases helpful for discussion or for Mrs. Nelsons family? 6. How important is it for caregivers to have space to disagree and express differences of opinion? 7. Should Dr. White have been more comforting? 8. How successful is Dr. White at putting Mrs. Nelsons case in context?
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Theme 2: Deliberative Decision Making
Mrs. Nelsons caregivers and family face the difficult task of deciding what to do for her in the face of limited and unpleasant options compounded by conflicting values. Mrs. Nelsons family knows best the factual details of her life, what she regarded as important, and can best speak for her in terms of how she would prioritize the limited options. The caregivers know best the illness and range of medical treatments that are available as well as what other patients and families have found valuable or helpful in this kind of circumstance. The deliberative process involves the caregivers coming to understand Mrs. Nelsons values as stated by her family. An important requirement for an adequate deliberative process is establishing the basis for equality of the parties involved. Deliberating with an ethics team gives Dr. White and Ms. Grady an opportunity to review their reasoning and ensure that theyve reached a reasonable, balanced view. By challenging Dr. White, Ms. Mitchell makes him think critically about the plans for Mrs. Nelson. Learning Objective K Understand that the deliberative process involves the coming together of the various clinical and patient/family perspectives. Video Segments 1. Mrs. Nelsons surgeon, Dr. Adams, is more acutely aware of the severity of her malignancy. His remarks influence Dr. Whites thinking. 2. This ethics consult makes Dr. White reflect on what hes told the family. Note the pause before he responds to the query from the nurse/ethicist. 3. Both Ms. Grady and Dr. White help the Nelsons understand the seriousness of Mrs. Nelsons situation. 4. Notice the marked difference in Dr. Sanders approach when compared with Dr. White. Shes much more sympathetic and comforting, much less confrontational. Consider how this adds to or subtracts from the discussion Dr. White had with the family. Discussion Points 1. How does the shared decision-making process help or hinder this situation? 2. Do the clinicians involved in the deliberative process come to understand Mrs. Nelsons values as stated by her family? 3. What challenges is Dr. White facing? 4. Does the nurses perspective add something, making it easier for the Nelson family to ask questions and engage in the decision making? 5. Is it possible for the caregivers to be overly sympathetic and hence less helpful? 6. Is a basis for equality of the involved parties reached in either of the family meetings? 7. How could the meetings have been set up to accomplish a better setting for deliberation? 8. Is convincing the Nelsons to not transfer Mrs. Nelson out of the hospital a case of persuasion or coercion? 9. How does Dr. White justify the plans for withdrawing care?
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Theme 3: Respecting Wishes
Respecting Mrs. Nelsons preferences for treatment near the end of her life involves identifying and interpreting her wishes in this specific medical context. The limited time frame may create a problem for the Nelsons. As Andrea Nelson indicates, they may want to be sure they are not going to regret a decision in this kind of circumstance because it is so momentous. Knowing what Mrs. Nelson would want based on previous discussions seems to help the Nelsons both in defending her wish to die at home as well as realizing that it would be best to withdraw the ventilator. Accurately inferring preferences or wishes in a situation depends on consistency over a variety of choices. If Mrs. Nelson had consistently chosen to not want resuscitation, to not have surgery, and to not have dialysis in this kind of circumstance, then one can infer with a high degree of accuracy that she would prefer not being kept on the ventilator. Learning Objective K Understand that respecting a patients preferences for treatment involves both identifying and interpreting the patients wishes in the specific medical context. Video Segments 1. Dr. Adams had a conversation with Mrs. Nelson just before the tragic event. He is therefore in a position to iterate her wishes prior to the surgery and ICU situation. 2. The anesthesiologist reinforces Dr. Adams discussion. She describes a similar expression by Mrs. Nelson of her desire to not exist in a continued state of ongoing pain. Consider the impact of the separate opinion from the anesthesiologist, and how this reinforces and helps the subsequent caregivers to pursue Mrs. Nelsons wishes. 3. The family establishes Mrs. Nelsons wishes, especially concerning ventilators and other technical interventions. In terms of implementing her wishes, consider the importance of Mrs. Nelsons prior discussion with her family on this topic. 4. Dr. Sanders can comfort the Nelson family because she knows they are acting on behalf of Mrs. Nelson. Consider how crucial Dr. Sanders input is in insuring that the Nelson family does not have to feel an inordinate amount of guilt. Discussion Points 1. How important are previous conversations Drs. Adams and Sanders each had with Mrs. Nelson regarding her wishes for life-prolonging therapy in this circumstance? Without this input, would it have been more difficult or less likely that Mrs. Nelsons prior wishes would have been understood and followed? 2. Dr. Concepcion, the anesthesiologist, also spoke with Mrs. Nelson just before surgery and has some knowledge of what Mrs. Nelson would want. How helpful is her input in ascertaining Mrs. Nelsons wishes? 3. How much of a burden is on the Nelson family as they try to speak for Mrs. Nelson? 4. Accurately inferring wishes depends to a major extent on consistency over a variety of choices. Does this also apply to consistency of statements made to different people?
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Theme 4: Managing Conflict
Conflict, whether hidden or open, is common in these circumstances. Disagreement about what are the relevant facts, priorities, and differing background assumptionsin addition to the emotionally-laden nature of end-of-life careall contribute to a situation in which one can expect conflict and hence should think about its management. In group decision making, addressing conflict and increasing satisfaction with the decision by each member of the group depends on the degree of influence that each member feels he or she has in the group process. If a person feels marginalized, he or she is less likely to feel committed to the decision. Learning Objectives K Recognize that conflicts regarding issues at the end of life are inevitable. K Understand the importance of preparation for and management of conflict. Video Segments 1. Dr. White provokes some conflict by diminishing the Nelsons wants. 2. The Nelson family learns more about the limits of technology. The caregivers make some sharp distinctions between what is possible and impossible. 3. Andrea Nelson searches for some additional time and space in which to think more carefully. She wants to postpone the decision. 4. Dr. Sanders finds a middle ground, a place to achieve consensus. Note how her unique position as an ongoing caregiver, not intimately involved in the ICU decisions, provide her a position in which to promote a consensus choice. She has both the trust and the relationship with Mrs. Nelson and her family, as well as knowledge and a relationship to the caregivers and the institution. Discus sion Points 1. What is the nature of the disagreement between the Nelsons and Dr. White and Ms. Grady? How might this have been avoided? 2. Are there other ways to draw the limits of technology for the Nelsons? 3. Should there be some limit placed on the amount of time Andrea Nelson has to consider her decision? 4. Why is Andrea Nelson so concerned that a mistake will be made? 5. Is there anything that Dr. White or Ms. Grady could have done to involve Andrea and Mr. Nelson more in the group process? 6. How does each provider promote or hinder a climate of trust? 7. Does Dr. Sanders pre-existing relationship play a role in promoting trust with the Nelsons? What might have been helpful if Dr. Sanders had been unavailable?
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Theme 5: Mistake or Complication?
Mrs. Nelsons aspiration and subsequent pneumonia were the result of an adverse event that could have been a mistake or a complication. This is a difficult and complex situation with a serious acute complication on top of the unexpected discovery of recurrent advanced cancer. Learning Objective K Understand how to explain and discuss an adverse event with a patient and/or patients family. Video Segments 1. The anesthesiologist and surgeon communicate directly with the intensivist on the circumstances around this complication. Consider how this personal, direct communication helps the intensivist understand exactly what happened and aids in subsequent explanations to the family. 2. Dr. White listens to Dr. Concepcion, but believes the overall condition is so serious that it is unlikely to be reversible. Dr. White recognizes Dr. Concepcions personal feeling of responsibility. 3. Dr. White is very direct in approaching the complication. He also says he is sorry. Discussion Points 1. What is the difference between a mistake and a complication? To what extent was this avoidable and what difference does that make?
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2. To what extent is Dr. Concepcions view influenced by her sense of responsibility? How much should her view or feelings matter in deciding what to do or tell the Nelsons? 3. Does Dr. White give the Nelsons enough detail so they can understand what happened? Would more detail have created even more confusion and distrust in the Nelsons? 4. Does the fact that Dr. Concepcion explained the risk of aspiration to Mrs. Nelson before the surgery make any difference in terms of liability? 5. Dr. White learns directly from Drs. Adams and Concepcion about the adverse event, the findings at surgery, and Mrs. Nelsons previous wishes. Are there any advantages to a direct conversation as opposed to reading notes in a hospital chart or an e-mail message? 6. Dr. White tells the Nelsons that the pneumonia was a complication and tells them that he is sorry. Is this a good strategy for addressing an unexpected adverse event? Is the use of the word sorry an apology or an expression of sympathy? What makes it one or the other in this situation?

Theme 6: Defining Comfort
The goal of Mrs. Nelsons treatment, at this point, is to provide comfort. Here, we see a transition in the definition of comfort. Mrs. Nelsons family changes from feeling that she would be better off dying at home to believing that she could be comfortable while dying in the hospital. Dr. Sanders, Dr. Forrow, and Ms. Grady discuss several related factors including privacy, time at the bedside, confidence in the hospitals expertise, bringing home to the hospital, and making the hospital less of a cold and uncaring environment. Learning Objective K Differentiate between comfort care from the patients perspective and from the familys perspective. Video Segments 1. Dr. Sanders finds a way of reaching a middle ground with the Nelson family. On one hand, she agrees that dying at home has positive aspects to it that defines comfort the way Mrs. Nelson would regard it. On the other hand, Dr. Sanders sees other aspects of comfort which would not be so well addressed in the home environment. 2. The ethics consult provides an opportunity for the nurse to articulate how they can change the circumstances to make the Nelson family more comfortable. The consult team confirms this idea of modifying the hospital environment in a way that hopefully will help the family see how comfort is being achieved in terms that Mrs. Nelson would find acceptable. 3. The nurse/ethicist asks about the notion of comfort, and whether or not being in a certain place is worth the difficulty. 4. Dr. White addresses the fact that Mrs. Nelson is completely unaware of her surroundings. Discussion Points 1. What is involved in providing comfort for Mrs. Nelsons family and in helping them to adjust? 2. Does it help if the caregivers frame the discussion either in terms of what the family wants or what Mrs. Nelson wants? If so, whom is it most helpful for: Mrs. Nelson, her family, or the caregivers? 3. What altered the Nelsons perspective? 4. How could the factors discussed by Dr. Sander, Dr. Forrow, and Ms. Grady, contribute to a transition in the definition of comfort for the Nelsons? 5. Dr. White expresses a slightly different view of comfort. He focuses more on the Nelson family than on Mrs. Nelson. Should one have priority over the other?
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Module III: Withdrawing Life-sustaining Treatment

Theme 7: Discussing Withdrawal of Life-support
Clinicians discussing the withdrawal of life-support need to express sympathy, to provide explanations and reassurance, and to provide a commitment to preventing pain and suffering. Even though they agree with the general course of comfort care and withdrawal of life support for Mrs. Nelson, the Nelsons are still likely to have some questions and common fears that will need to be addressed, as indicated by Dr. Forrow and Ms. Mitchell. Some ethicists claim that the actions about to take place represent a kind of killing since the shortening of life is deliberate. From their view, the major question about this kind of action is not whether this is a killing or an allowing to die, but whether the actions taken are justified. Learning Objective K Understand the issues that surround withdrawal of life-support that need to be discussed with the patients family. Video Segments 1. The nurse/ethicist summarizes the current state of affairs and recognizes the existence of a consensus. She goes on to consider how things will occur. 2. The question of double-effect comes up, both from the theoretical aspect and from the personal/feeling aspect. Notice how the question is framed from the familys angle.
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3. Dr. White describes exactly what will happen, addressing the familys worry that something drastic or brutal might happen. 4. Dr. White explains the process and why it takes place that way. Notice that the nurse is present. Consider the impact of her presence as a witness as well as a participant and caregiver. Discussion Points 1. In this situation, are Dr. Whites answers to Andrea Nelsons questions sufficient? 2. Would additional explanation have been helpful in addressing her concerns about her mothers experience during the withdrawal of the ventilator? 3. What makes the action of withdrawing life-support justified in this case? 4. If Dr. White had explained to Andrea Nelson that withdrawing the ventilator would have been a matter of justified killing, rather than allowing Mrs. Nelson to die, would she have found this helpful or harmful? 5. Is the distinction between killing and allowing to die a matter of semantics or accuracy? 6. By emphasizing the kindness and compassion of the medical action is Dr. White euphemizing the situation and making himself and others more comfortable with what happens? 7. To what extent should the caregivers be concerned about making the family feel comfortable with the events that are to take place? 8. To what extent is the concern for the family separable from the concern for the patient?

Theme 8: Assisting Dying in the ICU
This event, bringing about a patients death with as much dignity and meaning as possible, requires carefully managing a series of steps:
K
The role of religion is important, as Reverend McWalters reciting a prayer demonstrates. Patients often find comfort in having final religious services or rituals performed. The cardiac monitor demonstrates the transition in the loss of cardiac activity. Some practitioners prefer to turn the monitor off so that it doesnt interfere with the familys experience. Mrs. Nelsons nurse administers sedative medication immediately after the endotracheal tube is removed. Another approach involves allowing death by reducing the ventilation and inspired oxygen but leaving the endotracheal tube until after death occurs. For some survivors, physical contact between the family and the loved ones body after death may be very important. Others may find it too traumatic.
Learning Objective K Explore ways to manage the steps involved in assisting dying with dignity. Video Segments 1. Dr. White indicates that medication will be given to Mrs. Nelson. He makes a distinction between medication given preventatively to make sure there is no discomfort, versus medication that would have the direct purpose of shortening life to reduce discomfort. 2. The spiritual aspect of dying is dealt with here with direct involvement of the chaplain. 3. The EKG is normal. The patient is apneic. The nurse administers two doses of morphine to insure comfort. Mrs. Nelsons comfort is insured by the extra medication. 4. The EKG shows the physiological change from fibrillation to asystole. Andrea Nelson expresses her feelings and recognizes the absence of Mrs. Nelson as a person. Dr. White confirms the accuracy of the cardiogram by auscultating the chest. Discussion Points 1. How does this discussion about the purpose for the medication help? 2. How can administering sedative medication be distinguished from assisting suicide? 3. How important is the religious service likely to be for the Nelsons and/or the caregivers? 4. Why should the gesture of turning off the monitor matter? 5. What is the relation between the spiritual aspect of patient care and the technical or physical aspect of patient care? Does an emphasis on one necessarily impair the other? 6. What is the role or importance of physical contact between the Nelsons and Mrs. Nelsons body after her death? 7. Would it have been more meaningful for the Nelsons to be alone with Mrs. Nelson when she died? 8. Should the hospital or managed care organization caring for Mrs. Nelson have any responsibility for initiating grief counseling for the Nelsons?
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K K
Distribute Module IV to all group participants in advance of the session. Ask participants to view the introduction and the five video segments within the section Mrs. Nelsons Story. While viewing Mrs. Nelsons Story, ask participants to consider the following: l From Mrs. Nelsons perspective, how well did the caregivers function? l From the perspective of Mrs. Nelsons family, how well did the caregivers function? l What went well? What went poorly? l Considering the overall strategy of withdrawing life-sustaining treatment, could the professionals have helped Mrs. Nelson and her family by doing anything differently? When the group convenes, the facilitator can ask several open-ended questions aimed at initiating a whole-group discussion of the issues raised within Module IV. Opening questions should strive to stimulate discussion and encourage continued exploration. Cast question nets out to see what they bring in. This type of exploration typically uncovers the specific considerations, issues, and concerns of importance to the group. These can become the major themes for closer, more detailed discussion. Examples of opening questions might include those listed above, and the following: l What happened in the story? l What do you make of what you viewed? How did it make you feel? l Can you identify any issues? Why is that issue of importance? l As a professional, what would you have done differently? Why? How? The group session is likely to center on the key themes presented in Module IV. Whether the groups discussion naturally gravitates towards these, or whether the topic(s) are of particular relevance to them or the setting, the module themes can offer an effective approach to focusing discussion. Refer to the discussion points listed for each theme.
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Appendix
Common Themes
Common themes are represented throughout the four modules. The table below lists the themes within each module (vertically) and how they relate to themes within the other modules (horizontally). A cross-module teaching strategy can be useful with groups seeking to drill-down on specific thematic aspects within the curriculum.
Module I
Delivering Bad News
Module II
Advance Care Planning
Module III
Module IV
Informed Consent in the Withdrawing LifeEmergency Department sustaining Treatmen t Uncertainty & Hope Framing Risks Understanding the Prognosis
Uncertainty
Framing with Hope
Family Giving Advice Nonverbal Communication
Supporting the Proxy
Supported Decision Making
Deliberative Decision Making
Listening & Responding
Nonverbal Communication Trust Pain & Suffering Managing Conflict Defining Comfort
Trust Goals Openings Taking Control Surprise Personal Responsibility and Guilt Leavings Goals & Values
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Structuring the Discussion Process vs. Event Proxy & Advance Directives Suspending DNR Respecting Wishes Mistake or Complication? Discussing Withdrawal of Life-support Assisting Dying in the ICU
Appendix
Using Multimedia To Enhance Physician-patient Communication at the End of Life
On medical rounds, Dr. Winter attends her patient, Adam Colman, who is terminally ill with pancreatic cancer. Mr. Colmans daughter approaches Dr. Winter and declares, I want you to do everything possible to treat my father. We have got to try everything. How does a clinician respond to a request for futile life-sustaining care? Communication between health care providers, patients, and their families is difficult at times of critical, life-threatening illness. Efforts to help professionals become competent, compassionate communicators in situations surrounding the end of life must cover more than just individual interactions between practitioners and patients. The process involves orchestrating a whole series of appropriate conversations, meetings, and discussions among all involved parties.
by Luke Sato, M.D., and Denise Bisaillon, Ed.D. Adapted from the September 1998 issue of Forum, published by Risk Management Foundation of the Harvard Medical Institutions.
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A Risk Management Challenge Inadequate communication among health care providers, and poor rapport between family and clinicians, can trigger malpractice claims. CRICO1 claims data reveal that, since 1986, 20 percent of CRICOs claims involved communication failure as a key risk management issue. Among the most formidable conversations are those that may involve end-oflife issues such as giving bad news, deciding when care is futile, and discussing the withdrawal of sustaining care. While only a few claims and suits directly involve end-of-life issues, they are some of the most costly CRICO cases. The 21 resuscitation-related cases since 1986 account for almost three percent of CRICOs total incurred costs during that period. The risk management challenges faced when dealing with clinician-patient communication are predominantly educational. How does one approach the vast area of communication as curriculum content? What is teachable? Can clinicians be taught to change the complex process of how they interact with others? For one answer to these questions, RMF looks to multimedia technology that offers a unique medium for exploring and presenting communication skills. A Powerful Educational Tool The term multimedia here refers to computer technology that incorporates sound, animation, and graphical and video data. Currently, the majority of multimedia software is delivered via CD-ROM, but its future is most likely on-line. Five key educational advantages of multimedia training for medical professionals are: 1) Multisensory Experience Multimedia conveys information or content in a more vivid (hence more memorable) manner than a traditional single-medium presentation. Since experience builds knowledge, the more varied the experience, the richer the knowledge imparted. Software applications that incorporate multimedia, although far from virtual reality and the real world, can convey a sense of presence and bring users closer to gaining personal knowledge through directed experience. The video medium can bring alive the context of an issue. Video can effectively convey non-textual/verbal information and movement that changes over time, such as the body language of a patient, or a physical finding such as a seizure disorder. Animation, while similar to video, allows the representation of imagery and motion that might otherwise be difficult to capture and present, such as illustrating surgical procedures. The use of sound elements to exemplify audio findings Continued
Appendix
Using Multimedia To Enhance Physician-patient Communication at the End of Life
(such as tone of voice or heart sounds) adds another realistic dimension to the information conveyed. Voiceover (sound narration) augmenting textual information provides a way of maintaining and amplifying learner focus and attention. In general, each of the multimedia elements has a relevant and appropriate use. The content to be taught helps inform and determine which elements to incorporate into the software application to best enhance the overall experience. 2) Interactivity As with any delivery method, pedagogy should be more important than the technology. Teaching that focuses on the interaction between the learner and his or her experience is more successful than passive learning. The multimedia approach encourages active participation in the learning experience by allowing the learner to physically interact with the content. 3) Exploration Multimedia provides an opportunity to manipulate the content and make new connections. The learner can explore from multiple perspectives, which is particularly suitable for the case method approach familiar to clinicians. For instance, through a multimedia program, the user can observe how each of several providers discusses treatment options with his or her patients. Multimedia can also make the abstract more concrete. It permits the learner to explore content that is difficult to teach by conventional methods, such as the notion of empathy. 4) Consistency Multimedia programs can ensure that the teaching points are consistent. Instructionally sound multimedia applications are designed around measurable objectives. Depending on the intent of the program, learners can be presented with feedback, self-check exercises, and mastery testing. The content and teaching points are presented in a consistent manner over time and remain available to the learner as a tool for future reference. 5) Flexible Delivery The format of a multimedia application can be tailored as a stand-alone, self-paced program where the learner simply navigates independently. It can also be designed to support group learning where facilitators lead discussions. Alternatively, a single well-designed program can be used in either setting. Management and Communication Strategies. With this application, learners can follow one or more clinicians talking about similar themes, including how to open the interaction (greeting the patient), how to leave, how to give advice, and how to talk about future plans. Appropriate video clips, designed to portray different styles of patient-clinician interactions, were identified and digitized into computer format. The program allows close analysis of these interactions by placing them side-by-side for comparison. Collaborative Harvard Medical Project In 1997, RMF expanded the program to assist clinicians in the Harvard medical community with their communication with patients and families involved in medical decision making. Caring at the End of Life: Management and Communication Strategies has been designed for physicians, nurses, medical students, and house staff. In addition, ethics committees, hospital administrators, risk managers, and in-house counsel may find it similarly helpful. I
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Appendix
Credits
Sponsor Risk Management Foundation of the Harvard Medical Institutions (RMF) Executive Producer Luke Sato, MD, RMF Director Lynn Peterson, MD, Brigham and Womens Hospital (BWH)
Harvard Medical School (HMS)
Executive Consultants Lynn Peterson, MD, BWH, HMS and Joshua Hauser, MD, BWH, HMS Performers
( in order of appearance) Mrs. Nelson (patient) Dr. Adams (surgeon) Ms. Humphrey (nurse) Dr. Bono (oncologist) Dr. Sanders (primary care) Mr. Nelson (patients husband) Dr. Concepcion (anesthesiologist) Ms. Grady (ICU nurse) Dr. White (intensivist) Andrea Nelson (patients daughter) Dr. Forrow (medical ethicist) Ms. Mitchell (medical ethicist) Rev. McWalter (chaplain) Gloria Kennedy Lynn Peterson, MD, BWH Diane Gilworth, RN, Harvard Vanguard James Ferrara, MD, Childrens Hospital Paula Johnson, MD, BWH Jack Kennedy Mercedes Concepcion, MD, BWH Bonnie Grady, RN, BWH Robert Truog, MD, Childrens Hospital Helena Pisetsky, MPH Lachlan Forrow, MD, Beth Israel Deaconess Medical Center (BIDMC) Christine Mitchell, RN, Childrens Hospital Janet McWalter, DMin, Mount Auburn Hospital
Consultants Ross Berkowitz, MD, BWH

J. Andrew Billings, MD, Massachusetts General Hospital (MGH) Stephen Cannistra, MD, Dana-Farber Cancer Institute (DFCI) David Eisenberg, MD, BIDMC
Research Assistants Sarah Levine, Harvard School of Public Health (HSPH)

Helena Pisetsky, MPH, HSPH
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Program Engineers/ Adam Bialek, Decision Systems Group, BWH, HMS Designers Tom Dicesare, Decision Systems Group, BWH, HMS
Kathleen Keefe, Decision Systems Group, BWH, HMS Michael Murie, Decision Systems Group, BWH, HMS Jeremy F. Price, Decision Systems Group, BWH, HMS
Videography Phred Churchill, Churchill Productions

Ed Boner, HMS
Multimedia Consultant / Trisha Vaccari, EdM Facilitators Guide Music Luke Sato, MD, RMF Executive Priscilla Dasse, RMF Editorial Advisor Project Manager Denise Bisaillon, EdD, RMF Communications Advisor Jock Hoffman, RMF Education Advisor Annette Bender, MPH, RMF Quality Assurance Jill Hubbard, RMF Graphics/Design Alison Anderson, RMF Artwork Clasped Hands Images 1999 PhotoDisc, Inc. RMF Advisory Board on Communication and Educational Strategies for the End of Life
Troyen Brennan, MD, JD, MPH, BWH Edwin Cassem, MD, MGH Ezekiel Emanuel, MD (co-chair), DFCI Lachlan Forrow, MD, BIDMC Gail Gazelle, MD, Harvard Pilgrim Health Care Christine Mitchell, RN, Childrens Hospital Lynn Peterson, MD (co-chair), BWH Russ Phillips, MD, BIDMC
Appendix
Facilitator Survey
This survey has been designed to gather feedback from facilitators across the Harvard system using the Caring at the End of Life CD-ROM and the accompanying Facilitators Guide. In order to improve and enhance future editions of these materials, please complete the tear-out survey below and return it to the address provided. Thank you in advance for your valuable feedback.
Name _________________________ Institution _________________________________ E-mail address _____________________________________________________________ Location of program ________________________________________________________ Number of participants ______________________________________________________ Participants specialties ______________________________________________________ Which module(s) did you use for the program? I II III IV
Describe briefly what you like about using the CD-ROM program, Caring at the End of Life: Management and Communication Strategies. __________________________________________________________________________ __________________________________________________________________________ Describe what you didnt like about using the program.
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_________________________________________________________
________________________________________________________________
What changes or additions would you suggest? __________________________________
_________________________________________________________
Please describe any other issues (e.g., technical problems, participants responses) related to presenting this program. ____________________________________________ __________________________________________________________________________ Please detach and return this survey to: Annette Bender, MPH by mail Risk Management Foundation 13th Floor 101 Main Street Cambridge, MA 02142
by fax 617-495-9711 via the Internet www.RMF.Harvard.edu
Thank You

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Caring at the End of Life: Management and Communication Strategies

Delivering Bad News

Module II: Advance Care Planning

Module III: Informed Consent in the Emergency Department

Module IV: Withdrawing Life-sustaining Treatment

Caring at the End of Life: Management and Communication Strategies

Required Software / Plug-ins

CD-ROM Installation and Program Start-up

Caring at the End of Life: Management and Communication Strategies

Please complete the Facilitators Survey included on Page 51

Caring at the End of Life: Management and Communication Strategies

Caring at the End of Life: Management and Communication Strategies

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Mrs. Nelsons Story

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Caring at the End of Life: Management and Communication Strategies

Module I: Delivering Bad News

Caring at the End of Life: Management and Communication Strategies

Module II: Advance Care Planning

Mrs. Nelsons Story

Caring at the End of Life: Management and Communication Strategies

Module II: Advance Care Planning

Caring at the End of Life: Management and Communication Strategies

Module II: Advance Care Planning

Caring at the End of Life: Management and Communication Strategies

Module II: Advance Care Planning

Caring at the End of Life: Management and Communication Strategies

Module II: Advance Care Planning

Caring at the End of Life: Management and Communication Strategies

Module II: Advance Care Planning

Caring at the End of Life: Management and Communication Strategies

Module II: Advance Care Planning

Caring at the End of Life: Management and Communication Strategies

Module II: Advance Care Planning

Caring at the End of Life: Management and Communication Strategies

Module II: Advance Care Planning

Caring at the End of Life: Management and Communication Strategies

Module III: Informed Consent in the Emergency Department

Mrs. Nelsons Story

Module III Themes

Caring at the End of Life: Management and Communication Strategies

Module III: Informed Consent in the Emergency Department

Caring at the End of Life: Management and Communication Strategies