US20090179381A1 - Kit for facilitating conversations - Google Patents

Kit for facilitating conversations Download PDF

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US20090179381A1
US20090179381A1 US12/013,336 US1333608A US2009179381A1 US 20090179381 A1 US20090179381 A1 US 20090179381A1 US 1333608 A US1333608 A US 1333608A US 2009179381 A1 US2009179381 A1 US 2009179381A1
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cards
person
kit
agent
planning
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Elizabeth S. Menkin
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CODA ALLIANCE
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    • AHUMAN NECESSITIES
    • A63SPORTS; GAMES; AMUSEMENTS
    • A63FCARD, BOARD, OR ROULETTE GAMES; INDOOR GAMES USING SMALL MOVING PLAYING BODIES; VIDEO GAMES; GAMES NOT OTHERWISE PROVIDED FOR
    • A63F1/00Card games
    • GPHYSICS
    • G09EDUCATION; CRYPTOGRAPHY; DISPLAY; ADVERTISING; SEALS
    • G09BEDUCATIONAL OR DEMONSTRATION APPLIANCES; APPLIANCES FOR TEACHING, OR COMMUNICATING WITH, THE BLIND, DEAF OR MUTE; MODELS; PLANETARIA; GLOBES; MAPS; DIAGRAMS
    • G09B19/00Teaching not covered by other main groups of this subclass
    • G09B19/22Games, e.g. card games
    • AHUMAN NECESSITIES
    • A63SPORTS; GAMES; AMUSEMENTS
    • A63FCARD, BOARD, OR ROULETTE GAMES; INDOOR GAMES USING SMALL MOVING PLAYING BODIES; VIDEO GAMES; GAMES NOT OTHERWISE PROVIDED FOR
    • A63F1/00Card games
    • A63F1/04Card games combined with other games
    • A63F2001/0441Card games combined with other games with a written message or sentence, e.g. chance or instruction cards

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  • This invention relates to kits for facilitating conversations.
  • it relates to such kits and methods for their use to facilitate conversations about personal planning subjects such as conversations about advance directives, about long range personal economic matters and in a preferred embodiment about end-of-life care.
  • advance directives is often used in medical and estate planning circles for instructions and information provided by an individual to family and to health care community members (“health care providers”) concerning that individual's end-of-life desires. Advance directives can be formal written documents but they can also be much more informal. In all cases, however, the gathering and communicating of information related to an individual's advance directives or to an individual's end-of-life wishes and long range plans in a more general sense is a particularly personal and, in many cases, difficult and sensitive task.
  • PSDA Patient Self-Determination Act
  • Coda Alliance 7 the Silicon Valley (Santa Clara County, California) coalition for end-of-life care. Coda Alliance's goal is to promote a culture shift in how the community thinks about end-of-life care and other aspects of long range personal planning. The ideal would be to have the public able to talk about palliative care and hospice as well as other aspects of senior planning like they talk about other financial planning matters or car insurance.
  • Coda Alliance promotes conversations before the crisis arises, helping people discuss, “What's important to me?” 6 http://www.pbs.org/wnet/onourownterms/2000, Educational Broadcasting Corporation/Public Affairs Television, Inc. Accessed Oct. 11, 2006 7
  • a Coda is a final passage in a piece of music, summing up preceding themes and bringing the piece to a harmonious conclusion.
  • Coda Alliance started with promoting Advance Health Care Directives, modeled on the La Crosse community outreach project, 8 training both health care professionals and volunteers in facilitating advance care planning conversations. These trainings, which included lectures, videos, small group exercises roles plays and feedback, were expensive both in time invested and training materials. In follow up, many of the trainees indicated that the training they had received and the then-available materials did not provide them the confidence to volunteer to speak to subsequent pairs or groups of individuals who wanted to learn more about advance directives. 8 Hammes B J and Rooney B L. Death and end-of-life planning in one Midwestern community. Archives of Internal Medicine. 1998;158:383-390.
  • Coda Alliance also trained physicians in the basics of end-of-life care using the EPEC curriculum. 9 Many physicians reported frequent encounters with health care proxies who, faced with the tragic and sudden critical illness of their loved one, were paralyzed as to how to make decisions other than “Don't let him/her die!” 9 EPEC Project, The Robert Wood Johnson Foundation, 1999. The Project to Educate Physicians in End-of-life Care comes from the Institute for Ethics at the American Medical Association. Curriculum available at http://www.va.gov/oaa/flp/epec/default.asp (Accessed Oct. 20, 2006)
  • Coda Alliance next embarked on a project to promote better understanding of end-of-life care and more advance care planning discussions between community members in assisted living facilities and their prospective health care proxies.
  • Assisted living facilities were chosen as the setting because they are “upstream” from the hospital in the continuum of care and an appropriate place to begin these discussions. It was recognized that assisted living facilities provided a population where cognition and language issues were often challenging.
  • a need for a simple, easy to use tool that would promote discovery and discussion of the patient's most important values and goals was recognized. The tool had to be inexpensive and require only minimal training to use. In response to these needs, the present invention was made and developed.
  • This tool is a kit including a plurality of cards and instructions. Each card bears a different outcome potentially desired by the person.
  • the instructions direct the person and/or another acting in that person's behalf to select from that plurality of cards those cards which most closely reflect the outcomes desired by the person and to thereafter communicate to others the identity of these most-closely-reflecting selected cards.
  • the cards additionally include one or more wild cards not bearing a different outcome and the instructions direct the person and/or to another acting in that person's behalf to ascribe to one or more of these wild cards an outcome identified by the person but not reflected in the different outcomes borne by the preprinted cards and direct the person that these wild cards can be included in the selected cards selected.
  • the instructions further direct the person and/or another acting in that person's behalf to select from that plurality of cards those cards which most closely reflect the outcomes desired by the person and to thereafter communicate to others likely to be involves in achieving the person's desired outcomes the identity of these most-closely-reflecting selected cards.
  • the instructions further direct the person and/or to another acting in that person's behalf to select from that plurality of cards those cards which least closely reflect the outcomes desired by the person and to thereafter communicate to others the identity of these least-closely-reflecting selected cards.
  • the instructions further include instructions to the person and/or to another acting in that person's behalf to identify and rank about ten cards which most closely reflect the outcomes desired by the person and to thereafter communicate to others the identity of the about ten cards.
  • kits which include two or more at least substantially identical decks of cards, each of which decks includes a plurality of cards, each card bearing a different outcome potentially desired by the person and instructions to that person and/or to another acting in that person's behalf to select from a first deck of cards those cards which most closely reflect the outcomes desired by that person and to thereafter communicate to the potential healthcare agent or other party involved in achieving the person's desires the identity of these most-closely-reflecting selected cards and instructions to the agent acting or to act in the person's behalf to select from the second deck of cards those cards which to the potential agent most closely reflect the outcomes desired by that person and to thereafter communicate to the person and/or to another acting in that person's behalf the identity of these cards selected as most-closely-reflecting by the potential agent.
  • the decks of cards can include wild cards, as well.
  • the instruction can also provide for the assembly and communication of least-closely-reflecting cards.
  • the instructions may also direct the conferring parties to come up with a consensus selection of cards based upon a merging of their individual selections.
  • depictions of the representative goals need to in a form that is commonly understood by all of the participants in the individual planning/communication process.
  • the message depicting the goals, if verbal, needs to be in the language that is appropriate for the participants. It may also be helpful to depict the representative goals graphically (with pictures). Combinations of words and pictures can be used as well. Examples of depictions of goals graphically are provided in FIG. 4A and FIG. 4B .
  • this invention provides any of the above described kits and their use for focusing and communicating to a potential heath care agent advance care planning by or for a person considering the last portion of that person's life.
  • FIG. 1 is a representation of obverse and reverse views of some of the cards used in the kit of the invention
  • FIGS. 2 and 3 are representations of typical sheets of instructions provided in the kits of this invention.
  • FIG. 4 which includes FIGS. 4A and 4B is a representation of additional representative cards being graphic depictions possible goals used in the kit of the invention.
  • the tool also should be easy to use with community members who have limited language skills. Many seniors such as assisted living residents may have impaired vision, hearing, and/or memory. Many of the facility aides and nursing assistants in such settings may speak English as a second language with limited fluency.
  • a deck of cards was assembled with a single value or goal written on each of 39 cards, plus an optional wild card to keep the options open-ended.
  • the exact number of cards in the deck is not critical but should be large enough to present a good variety of important goals but not so great as to unduly confuse or unduly complicate the goal-setting and communication process.
  • Decks having from about 25 to about 50 cards (of which up to five or ten could be the optional wild cards) are commonly used. Deck sizes of 30 to 45 cards with up to five wild cards are preferred.
  • the preprinted cards each include a different single end-of-life goal. Examples of these goals listed on the cards may include—
  • the wild cards can be written upon to reflect a particular goal or can be merely used as a reminder of such goals for later communication.
  • the second step in the exercise was to instruct the participants to choose the top ten in the “very important” pile. After they had successfully struggled with that step, they were asked to rank the top ten choices, and then record their choices on a grid sheet.
  • the recording grid was used only if a facilitator or family member was present to assist, or if the person doing the sort requested to keep a record of all their choices.
  • the residents and their family members seemed to get much more out of the exercise by talking about why the most important things were important and why the unimportant things had been chosen for the discard pile.
  • the instructions which are part of this kit cover several variations on the use of the cards. These include a “solitaire” version, as well as versions for pairs of individuals and groups. Representative examples of such instruction sheets are provided as FIGS. 2 and 3 .
  • FIG. 4A and 4B illustrates representative cards which graphically depict possible goals.
  • All of the participants in the planning process need to be “sending and receiving” the same message when a card is selected or deselected and this selection or deselection is communicated. This applies to goals depicted on the cards in words and to goals depicted using graphics.
  • One of the tasks involved in coming up with appropriate potential goals and appropriate depiction of these goals on the cards has been to confirm this. This can be done by presenting a potential card to representative participants and interviewing them one by one to learn exactly what goal they each think the card represents.
  • the palliative care physician was asked by the ICU attending physician whether she might begin some discussions of end-of-life issues with a 46-year-old man in the unit who had been on a ventilator for six weeks following multiple traumas in an automobile accident.
  • Mrs. K had lung cancer with profound complications. She was delirious. The series of attending hospitalists had convened multiple family meetings, trying to address the family's innumerable questions on details of her medical care, complications, explanations of her symptoms, medications, test results, etc. The three adult sons and husband all had different approaches to information and different emphases on issues.
  • the palliative care physician provided instructions to the husband and each son to pick out from his deck the cards that he thought would be the patient's top ten if she were doing the sorting herself.
  • the physician then went though each of the four groups of ten cards with the family as a group, laying out the cards and stacking the ones that got more than one ‘vote’. This exercise allowed the group both to acknowledge the range of their interpretations of her concerns and to direct the focus toward those goals and values that a majority of the family members agreed on as being most important to the patient.
  • Mrs. M was a 69-year-old first generation Hispanic married woman with treatment-resistant leukemia. Her experience with her illness so far was that each time she had been ill and hospitalized she had recovered and returned home. A devoutly religious Catholic, she stated, “God will heal me.” The admitting physician had indicated “full code” on her admission orders.
  • the palliative care team suggested convening a family meeting with the couple and their sons, but the sons declined the meeting.
  • the sons explained that the dynamics of the family were such that their father's role was a gender-based traditional cultural role. Their father was reluctant to bring up end-of-life issues for fear of their mother losing hope.
  • the sons felt that their mother had been keeping a strong front as a means of protecting her family. She had a reputation with both friends and family of being a strong, capable woman. At work and in her community, others frequently turned to her for support and advice.
  • the palliative care social worker introduced the cards to the patient and spouse with the suggestion that they choose some that were most important to Mrs. M, and to think about whether other important things were missing from the deck.
  • the pack of cards was left in room for the family to use when the patient was feeling like talking. The sons later commented that they were ashamed and appreciative that the cards were available to review and discuss as the patient's condition declined.
  • the simple but direct statements on the cards made it possible for them to talk with their mother about her hopes and wishes.
  • the patient was a 60 year old female physician suffering from breast cancer with metastases to the lungs who had two children, a son age 29 and a daughter 27.
  • the hospice chaplain had convened a family meeting to discuss the patient's wishes since both of the children had been away from home and had now moved back to care for their mother.
  • the chaplain suggested they use the GO WISH cards as a segue into the discussion.
  • Coda's intention in developing the tool was to promote conversations in advance care planning well in advance of serious illness.
  • the cards can be useful in situations that require care planning for the needs of those with current life-threatening severe illness and families in crisis.

Abstract

A card game kit for use as a planning tool to help people have conversations about difficult decisions is disclosed. The kit includes a deck of cards and instructions for their use. The cards identify potential outcomes and the instructions teach how to prioritize these outcomes such that the person considering issues can engage in focused communication about what is important to that person. In preferred embodiments the planning is advance care planning, the person is a person considering the last portion of that person's life and the outcomes are final outcomes.

Description

    FIELD OF INVENTION
  • This invention relates to kits for facilitating conversations. In a more particular aspect it relates to such kits and methods for their use to facilitate conversations about personal planning subjects such as conversations about advance directives, about long range personal economic matters and in a preferred embodiment about end-of-life care.
  • BACKGROUND OF THE INVENTION
  • The term “advance directives” is often used in medical and estate planning circles for instructions and information provided by an individual to family and to health care community members (“health care providers”) concerning that individual's end-of-life desires. Advance directives can be formal written documents but they can also be much more informal. In all cases, however, the gathering and communicating of information related to an individual's advance directives or to an individual's end-of-life wishes and long range plans in a more general sense is a particularly personal and, in many cases, difficult and sensitive task.
  • The 1990 Patient Self-Determination Act (PSDA)1 was passed to bring about improvements in this area and many institutions have mostly focused on compliance by providing some assistance with advance directives. Although the legal and regulatory aspects of advance directives have evolved little, the field of advance care planning has evolved, driven in part by the failure of a document-focused model to yield substantive changes in the quality of care at the end of life.2 Proponents of advance care planning are shifting focus from a legal, document-driven effort to one that seeks to engage patients, families, and surrogates in conversations about hopes, wishes, values, and goals of care and other aspects of long range planning.3, 4, 5 1 PUBL010-508, 1990.2 Lorenz K, Lynn J, Morton S C, Dy S, Mularski R, Shugarman L, Sun V, Wilkinson A, Maglione M, Shekelle P G. End-of-Life Care and Outcomes. Evidence Report/Technology Assessment No. 110. (Prepared by the Southern California Evidence-based Practice Center, under Contract No. 290-02-0003.) AHRQ Publication No. 05-E004-2. Rockville, Md.: Agency for Healthcare Research and Quality. December 2004.3 Romer A L, Hammes B J. Communication, trust, and making choices: Advance care planning four years on. Innovations in End-of-Life Care. 2003;5(2): www.edc.org/lastacts4 von Gunten C F, Ferris F, and Weissman D E. Fast Fact and Concept #38: Discussing Hospice; 2nd Edition. July 2005. End-of-Life Palliative Education Resource Center www.eperc.mcw.edu.5 Back, A., Arnold, R., Baile, W., Tulsky, J., Fryer-Edwards, K. Managing Transitions to Palliative Care When Chemotherapy is Failing. Oncotalk: Improving oncologists” communication skills. Learning Module 3. 2002. http://depts.washington.edu/oncotalk/Modules03.pdf
  • The Bill Moyers television series “On Our Own Terms”6 gave impetus to some grass-roots efforts in communities to promote conversations and the interchange of information about advance care planning. One such community organization is Coda Alliance,7 the Silicon Valley (Santa Clara County, California) coalition for end-of-life care. Coda Alliance's goal is to promote a culture shift in how the community thinks about end-of-life care and other aspects of long range personal planning. The ideal would be to have the public able to talk about palliative care and hospice as well as other aspects of senior planning like they talk about other financial planning matters or car insurance. Coda Alliance promotes conversations before the crisis arises, helping people discuss, “What's important to me?”6 http://www.pbs.org/wnet/onourownterms/2000, Educational Broadcasting Corporation/Public Affairs Television, Inc. Accessed Oct. 11, 20067 A Coda is a final passage in a piece of music, summing up preceding themes and bringing the piece to a harmonious conclusion.
  • Coda Alliance started with promoting Advance Health Care Directives, modeled on the La Crosse community outreach project,8 training both health care professionals and volunteers in facilitating advance care planning conversations. These trainings, which included lectures, videos, small group exercises roles plays and feedback, were expensive both in time invested and training materials. In follow up, many of the trainees indicated that the training they had received and the then-available materials did not provide them the confidence to volunteer to speak to subsequent pairs or groups of individuals who wanted to learn more about advance directives. 8 Hammes B J and Rooney B L. Death and end-of-life planning in one Midwestern community. Archives of Internal Medicine. 1998;158:383-390.
  • Coda Alliance also trained physicians in the basics of end-of-life care using the EPEC curriculum.9 Many physicians reported frequent encounters with health care proxies who, faced with the tragic and sudden critical illness of their loved one, were paralyzed as to how to make decisions other than “Don't let him/her die!”9 EPEC Project, The Robert Wood Johnson Foundation, 1999. The Project to Educate Physicians in End-of-life Care comes from the Institute for Ethics at the American Medical Association. Curriculum available at http://www.va.gov/oaa/flp/epec/default.asp (Accessed Oct. 20, 2006)
  • Coda Alliance next embarked on a project to promote better understanding of end-of-life care and more advance care planning discussions between community members in assisted living facilities and their prospective health care proxies. Assisted living facilities were chosen as the setting because they are “upstream” from the hospital in the continuum of care and an appropriate place to begin these discussions. It was recognized that assisted living facilities provided a population where cognition and language issues were often challenging. A need for a simple, easy to use tool that would promote discovery and discussion of the patient's most important values and goals was recognized. The tool had to be inexpensive and require only minimal training to use. In response to these needs, the present invention was made and developed.
  • The tool provided by this invention and its use are described in an article published by the present inventor in the Journal of Palliative Medicine. 10 10 Menkin, E, Go Wish: A tool for “the conversation”. Journal of Palliative Medicine April 2007.
  • While one focus of this tool is its use in agreeing upon suitable medical advance directives, it will be appreciated that it can find similarly valuable application in facilitating other difficult conversations such as involve family long range financial and personal planning.
  • STATEMENT OF THE INVENTION
  • A tool for focusing advance care planning and other difficult-to-discuss planning issues by a person has now been discovered. This tool is a kit including a plurality of cards and instructions. Each card bears a different outcome potentially desired by the person. The instructions direct the person and/or another acting in that person's behalf to select from that plurality of cards those cards which most closely reflect the outcomes desired by the person and to thereafter communicate to others the identity of these most-closely-reflecting selected cards.
  • In one embodiment of this invention the cards additionally include one or more wild cards not bearing a different outcome and the instructions direct the person and/or to another acting in that person's behalf to ascribe to one or more of these wild cards an outcome identified by the person but not reflected in the different outcomes borne by the preprinted cards and direct the person that these wild cards can be included in the selected cards selected.
  • In another embodiment, the instructions further direct the person and/or another acting in that person's behalf to select from that plurality of cards those cards which most closely reflect the outcomes desired by the person and to thereafter communicate to others likely to be involves in achieving the person's desired outcomes the identity of these most-closely-reflecting selected cards.
  • In yet another embodiment, the instructions further direct the person and/or to another acting in that person's behalf to select from that plurality of cards those cards which least closely reflect the outcomes desired by the person and to thereafter communicate to others the identity of these least-closely-reflecting selected cards.
  • In additional embodiments the instructions further include instructions to the person and/or to another acting in that person's behalf to identify and rank about ten cards which most closely reflect the outcomes desired by the person and to thereafter communicate to others the identity of the about ten cards.
  • In other additional embodiments this invention provides kits which include two or more at least substantially identical decks of cards, each of which decks includes a plurality of cards, each card bearing a different outcome potentially desired by the person and instructions to that person and/or to another acting in that person's behalf to select from a first deck of cards those cards which most closely reflect the outcomes desired by that person and to thereafter communicate to the potential healthcare agent or other party involved in achieving the person's desires the identity of these most-closely-reflecting selected cards and instructions to the agent acting or to act in the person's behalf to select from the second deck of cards those cards which to the potential agent most closely reflect the outcomes desired by that person and to thereafter communicate to the person and/or to another acting in that person's behalf the identity of these cards selected as most-closely-reflecting by the potential agent. In this embodiment the decks of cards can include wild cards, as well. The instruction can also provide for the assembly and communication of least-closely-reflecting cards.
  • In this embodiment where selections are made from multiple decks of cards by two or more persons it is generally considered helpful to the overall outcome if the persons making selections are instructed to confer with one another and discuss the similarities and differences between their respective selections.
  • In this embodiment the instructions may also direct the conferring parties to come up with a consensus selection of cards based upon a merging of their individual selections.
  • In each of these embodiments it is important that the result of the use of the cards be communicated, whenever possible, to the person about whom the planning is being carried out and in all cases to all other persons who are likely to be involved in these decisions and their consequences. These other persons can be selected from family members, family planners, health care providers, or other agents or surrogates for the person who might be acting in the future as the person's proxy in making planning decisions, either as a result of being named in a power of attorney document or by being otherwise chosen to act as surrogate by the person or by being chosen to act as surrogate by consensus among the caregivers and loved ones of the person.
  • It will also be appreciated that the depictions of the representative goals need to in a form that is commonly understood by all of the participants in the individual planning/communication process. The message depicting the goals, if verbal, needs to be in the language that is appropriate for the participants. It may also be helpful to depict the representative goals graphically (with pictures). Combinations of words and pictures can be used as well. Examples of depictions of goals graphically are provided in FIG. 4A and FIG. 4B.
  • In a presently preferred embodiment this invention provides any of the above described kits and their use for focusing and communicating to a potential heath care agent advance care planning by or for a person considering the last portion of that person's life.
  • DETAILED DESCRIPTION OF THE INVENTION Brief Description of the Drawings
  • This invention will be further described with reference being made to the accompanying drawings in which:
  • FIG. 1 is a representation of obverse and reverse views of some of the cards used in the kit of the invention;
  • FIGS. 2 and 3 are representations of typical sheets of instructions provided in the kits of this invention; and
  • FIG. 4, which includes FIGS. 4A and 4B is a representation of additional representative cards being graphic depictions possible goals used in the kit of the invention.
  • Tool Deveolpment
  • Population-based research reveals a number of commonly-cited statements about what's important when life is short, and provides a list of potential topics that can be used in a values history.11 However, asking the prospective patient to rank values on a Likert scale tends to show all of them as important. Even forced-choice priority ranking fails to promote discussion of what the patient is thinking about when he or she chooses a statement as being important. 11 Steinhauser, K., Christakis, N A., PhD, Clipp, E C., McNeilly, M., McIntyre, L., Tulsky, J A. Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers. JAMA 2000; 284(19):2476-2482.
  • The tool also should be easy to use with community members who have limited language skills. Many seniors such as assisted living residents may have impaired vision, hearing, and/or memory. Many of the facility aides and nursing assistants in such settings may speak English as a second language with limited fluency.
  • With these factors in mind, development of the present invention was undertaken. A deck of cards was assembled with a single value or goal written on each of 39 cards, plus an optional wild card to keep the options open-ended. The exact number of cards in the deck is not critical but should be large enough to present a good variety of important goals but not so great as to unduly confuse or unduly complicate the goal-setting and communication process. Decks having from about 25 to about 50 cards (of which up to five or ten could be the optional wild cards) are commonly used. Deck sizes of 30 to 45 cards with up to five wild cards are preferred.
  • The preprinted cards each include a different single end-of-life goal. Examples of these goals listed on the cards may include—
      • “To have my financial affairs in order”
      • “To be free from anxiety”
      • “To be free from pain”
      • “To pray”
      • “Not being short of breath”
      • “Not dying alone”
      • “To be able to help others”
      • “To feel that my life is complete”
      • “To have an advocate who knows my priorities'” “To maintain my dignity”
      • “To have close friends near”
      • “To prevent arguments by making sure that my family knows what I want”
      • “To be treated the way I want”
      • “To keep my sense of humor”
      • “To have my family prepared for my death”
      • “To be able to talk about what scares me”
      • “To die at home”
      • “To be at peace with God”
  • It will be appreciated that these goals are merely representative of end-of-life care goals and could be reworded or even replaced by other similar goals if desired, particularly if the planning is not entirely focused on end-of-life issues. Such as long term care decisions, and long term personal financial planning issues.
  • The wild cards can be written upon to reflect a particular goal or can be merely used as a reminder of such goals for later communication.
  • At educational sessions for the assisted living facility residents, family members and staff, in addition to using lectures, discussions, and handouts, the above-described cards were used in a structured exercise. The cards were introduced as some examples of what people might say would be important to them if they were seriously ill or nearing the end of their life.
  • Residents were given instructions to sort the cards into three piles: one pile of what they felt would be “very important” to them, a second pile for what was “important”, and a third pile of those items that were “not important to me”. There was initially no requirement about the number of cards in any of the piles. Family members and staff were instructed to carry out the same exercise with regard to their perceptions of individual resident's priorities.
  • The second step in the exercise was to instruct the participants to choose the top ten in the “very important” pile. After they had successfully struggled with that step, they were asked to rank the top ten choices, and then record their choices on a grid sheet.
  • In initial trials, it was found that the task of recording their choices on the form was confusing and burdensome to many residents. Another drawback of the recording task was that it became the focus of the exercise, detracting from opportunities for discussions. Some of the cognitively impaired patients were so stressed out by the task of finding each of the top ten items on the list that they refused to play card games at the assisted living facility for weeks afterward.
  • Subsequently, the recording grid was used only if a facilitator or family member was present to assist, or if the person doing the sort requested to keep a record of all their choices. The residents and their family members seemed to get much more out of the exercise by talking about why the most important things were important and why the unimportant things had been chosen for the discard pile.
  • For the participants who had difficulty reading the cards, the exercise could be completed much more successfully and with less stress to the resident if there was a family member or volunteer who could read each card to the participant and ask their opinion about the simple statement they had just heard. Even participants with poor short-term memory seemed eager to hear the options and express their opinions, and their facilitator was able to keep track of the sorting.
  • In initial trials of the cards, some options were consistently chosen as being of little importance, and others were deemed to be process steps rather than goals, so these items were discarded or revised. The prototype cards, printed on business card stock, were difficult for arthritic hands to manipulate. When several people played the game together at a table, cards frequently fell on the floor or got mixed up from one pack to another.
  • The redesign of the cards incorporated lessons learned during the assisted living facility trials, as well as from other tryouts of the cards with community groups and in training conferences with health care professionals. With the advice of a communication consultant, the wording on the cards was revised to be consistent in tone, predominantly stated in a positive voice, and simplified in reading level. The text was put onto large, easy-to-read layout. Playing card-sized cards, that is cards about 3½ to 4 inches long by about 2½ to about 2⅞ inches wide gave good results. A graphic designer created an attractive colorful back for the cards. To make it easy to sort the cards back into their original packs, sets were made available in four different colors. The packaging box for the cards and associated instructions was designed to further the image of this tool as a ‘card game’.
  • The instructions which are part of this kit cover several variations on the use of the cards. These include a “solitaire” version, as well as versions for pairs of individuals and groups. Representative examples of such instruction sheets are provided as FIGS. 2 and 3.
  • As previously noted, the depictions of goals on cards can be done verbally or with the help of graphics. FIG. 4A and 4B illustrates representative cards which graphically depict possible goals.
  • All of the participants in the planning process need to be “sending and receiving” the same message when a card is selected or deselected and this selection or deselection is communicated. This applies to goals depicted on the cards in words and to goals depicted using graphics. One of the tasks involved in coming up with appropriate potential goals and appropriate depiction of these goals on the cards has been to confirm this. This can be done by presenting a potential card to representative participants and interviewing them one by one to learn exactly what goal they each think the card represents.
  • The following are examples of cases where the card game kit has been useful, sometimes as expected, sometimes in unexpected ways. Rather than the often blank response to the question, “What is most important to you?”12 the cards and instructions provide important vocabulary to give voice to patients' needs and concerns, and give opportunity to explain and personalize those ideas in communication between the person facing these decisions and that person's family and/or other care givers.. In the acute care setting, the cards exercise can impact care planning, expose quality of life issues, and identify activities that are amenable to intervention. 12 Quill, T, Norton, S, Shah, M, Lam, Y, Fridd, C, Buckley, M. What is Most Important for You to Achieve?: An Analysis of Patient Responses When Receiving Palliative Care Consultation. Journal of Palliative Medicine April 2006;9(2):382-388
  • EXAMPLES
  • The ICU Patient
  • The palliative care physician was asked by the ICU attending physician whether she might begin some discussions of end-of-life issues with a 46-year-old man in the unit who had been on a ventilator for six weeks following multiple traumas in an automobile accident. The ICU attending doubted that the patient could ever survive off the ventilator, and doubted that he would leave the hospital alive. Nonetheless the patient was usually alert enough to communicate by nods or mouthing words, although he could not write.
  • The palliative care physician met with the patient and his wife, explaining that in the last couple of months there had been a lot of attention paid to his physical injuries but that she was hoping to help them take inventory on “the rest of what makes him who he is”. She showed them the pack of GO WISH cards and went over the instructions for their use. She asked the wife to show him each card and help him do the 3-category sort.
  • The palliative care physician came back the next day and found that in the “not important” pile were all the cards that had any mention of death. But there were plenty of cards in the very important pile, and the couple was asked to sort through the “very important” cards again for him to pick out the top ten. Later that day they worked on ranking the top ten.
  • Both the patient and his wife commented that the exercise had brought forth conversations that they had needed to have, but not gotten around to before that. His “wild-card” was to help his teen-age son to cope; the patient noted that his son had been left out of a lot of the prior discussions about what had been going on.
  • The results of his card-sort were used to identify issues that were amenable to physician/other health care provider intervention and other issues that were important to quality of life more generally. Within the top five were “to be free of pain”, “not being short of breath”, and “to be free from anxiety.” The patient's priority for improved symptom control was communicated back to the ICU attending. The social worker was asked to arrange a family meeting that would include the son. Since preparing for death was clearly not the patient's chosen agenda, that topic was dropped, and in fact he was later successfully weaned from the ventilator and sent to a rehabilitation inpatient program.
  • Sorting the Family's Issues
  • Mrs. K had lung cancer with profound complications. She was delirious. The series of attending hospitalists had convened multiple family meetings, trying to address the family's innumerable questions on details of her medical care, complications, explanations of her symptoms, medications, test results, etc. The three adult sons and husband all had different approaches to information and different emphases on issues.
  • Using four packs of cards, the palliative care physician provided instructions to the husband and each son to pick out from his deck the cards that he thought would be the patient's top ten if she were doing the sorting herself. The physician then went though each of the four groups of ten cards with the family as a group, laying out the cards and stacking the ones that got more than one ‘vote’. This exercise allowed the group both to acknowledge the range of their interpretations of her concerns and to direct the focus toward those goals and values that a majority of the family members agreed on as being most important to the patient.
  • Mrs. M was a 69-year-old first generation Hispanic married woman with treatment-resistant leukemia. Her experience with her illness so far was that each time she had been ill and hospitalized she had recovered and returned home. A devoutly religious Catholic, she stated, “God will heal me.” The admitting physician had indicated “full code” on her admission orders.
  • At the request of the attending physician, the palliative care team suggested convening a family meeting with the couple and their sons, but the sons declined the meeting. The sons explained that the dynamics of the family were such that their father's role was a gender-based traditional cultural role. Their father was reluctant to bring up end-of-life issues for fear of their mother losing hope. The sons felt that their mother had been keeping a strong front as a means of protecting her family. She had a reputation with both friends and family of being a strong, capable woman. At work and in her community, others frequently turned to her for support and advice.
  • The palliative care social worker introduced the cards to the patient and spouse with the suggestion that they choose some that were most important to Mrs. M, and to think about whether other important things were missing from the deck. The pack of cards was left in room for the family to use when the patient was feeling like talking. The sons later commented that they were grateful and appreciative that the cards were available to review and discuss as the patient's condition declined. The simple but direct statements on the cards made it possible for them to talk with their mother about her hopes and wishes.
  • She still felt strongly about wanting to have family around and wanting to help others, so they arranged for many extended-family members and friends to visit. Mrs. M gave each visitor blessings and asked them to look after her husband and sons. As the family saw her condition worsening, they felt there was no “unfinished business” and requested that no resuscitation attempts be made at the time of her death.
  • A Different Side of Mom
  • The patient was a 60 year old female physician suffering from breast cancer with metastases to the lungs who had two children, a son age 29 and a daughter 27. The hospice chaplain had convened a family meeting to discuss the patient's wishes since both of the children had been away from home and had now moved back to care for their mother. The chaplain suggested they use the GO WISH cards as a segue into the discussion.
  • When the patient identified the things that were most important to her, her children were amazed. Since she was a doctor and also a scientist, the children said that they thought she would be more clinical about her selections and would pick the cards having to do with the nurse and/or doctor, being mentally aware or not being in pain. They were surprised that she chose cards having to do with emotions like human touch, helping others, keeping a sense of humor, having family near and not being a burden. They said this gave them a look at the emotional side to their mother, and they then felt more comfortable being able to express their own emotions about her dying. They had been afraid to hold her hand or tell her funny stories until the meeting with the cards. It opened up a whole new discussion for them about death and dying and life in general, and at the end of the discussion they all hugged.
  • Comparing in Pairs
  • One of the physicians who had piloted use of the cards discovered at a Thanksgiving family reunion that he had been named as alternate agent for his step-mother-in-law in her durable power-of-attorney for healthcare document, with her own daughter being named as the primary agent. He gave a pack of cards each to the mother and daughter. He asked the mother to pick out what would be her top ten concerns if she were near the end of life, and asked the daughter to pick from her pack the ten concerns she thought her mother might be choosing as the most important. When both of them were finished picking the top ten, they compared cards. The daughter had picked eight out of ten of her mother's top ten. As he watched the mother and daughter in an animated discussion about the mismatching two cards, he felt confident that the daughter was going to be a knowledgeable surrogate for her mother.
  • “Aha” Comes Later
  • One son who attended an assisted living facility workshop told the facility director, months after the training, “I went to that class under duress thinking ‘why do I have to come?’” He went for his mother's sake and immediately afterwards he wouldn't have said he had any ‘aha’ experiences. Over the subsequent months his mother had become much more ill. He told the facility director, “I didn't ‘get it’ till months later. As we were sitting talking to Mom's doctor in his office, I remembered those cards and talking about those things with Mom. I was much better equipped . . . It never dawned on me why this was so important. I knew more what I have to do for Mom and have a whole different attitude [about the training] because of what happened in the doctor's office. That was really worthwhile, although I wouldn't have said it at the time.”
  • The Unbefriended—Introducing Hospice
  • A 75 year old man was admitted to custodial care in a skilled nursing facility with a history of malnutrition and failure of self-care, weight loss and anemia. Fifteen months prior he had cancer which had now recurred. He had a history of medical noncompliance with multiple failed outpatient appointments, failure to take medications on an outpatient basis, involvement of adult protective services, and a diagnosis of mild dementia. Despite his history, psychiatric evaluation had deemed him to have intact decision-making capacity.
  • In answer to the 'tell me what you understand about your illness' question,13 the patient was able to acknowledge that his life expectancy was in months rather than years. So the nursing facility attending physician introduced the card-sorting exercise, saying, “These are things that other people whose time might be short have said are important to them. I was wondering if any of them are really important to you, or if there are other things not on these cards that are very important to you.”13 Chittenden, E H, Clark, S T, Pantilat, S Z. Discussing resuscitation preferences with patients: Challenges and rewards. Journal of Hospital Medicine 2006;1:231-240.
  • The patient had difficulty reading the cards for himself, but listened to each one being read aloud and indicated whether he thought it was important, so-so, or not important. For one who had distinguished himself as a loner, it came as a bit of a surprise that it was very important to him to have medical care givers who know him as a person and whom he could trust. He wanted to have an advocate who would know his wishes and who would help him sort out some financial issues.
  • Review of the preferences he had expressed in the exercise revealed opportunities where hospice could help meet several of his expressed needs: He could develop a relationship with a hospice nurse that he could trust, the hospice social worker could help him with getting his financial affairs in order and also help with his funeral planning, and hospice staff would pay attention to his physical comfort. Hospice was introduced as a program that could help him meet these goals, he agreed to the referral, and his goals were incorporated into the hospice plan of care.
  • These examples illustrate clinical experiences in which the cards and kit have been beneficial for promoting conversations between patients, their loved ones, and their medical care providers. The use of cards and kit can be proctored by both professional and quasi-professional staff or even by a caregiver after minimal instruction. This kit is a useful, very inexpensive, and intuitive tool for furthering goals and value-oriented conversations about illness and preferences for care, for facilitating patient-proxy-provider understanding, and for identifying hopes. The conversations seem to come easily when the task is framed as, “These are some things that people have said would be important if their remaining time was short. Which of these might be important to you?” The cards provide a wide selection of examples of concerns with which the patient can agree, disagree, or amend and interpret.
  • Coda's intention in developing the tool was to promote conversations in advance care planning well in advance of serious illness. However, the cards can be useful in situations that require care planning for the needs of those with current life-threatening severe illness and families in crisis.
  • Funding
  • The Assisted Living Education in Palliative and Hospice Care (ALEPH Care) project was made possible by a grant from the Archstone Foundation.
  • A community services grant from Kaiser Foundation partly funded the production costs of the cards.

Claims (22)

1. A kit for focusing planning by or for a person, the kit including a plurality of cards, each card bearing a depiction of a different outcome potentially desired by the person and instructions to the person and/or another acting in that person's behalf to select from that plurality of cards those cards which most closely reflect the outcomes desired by the person and to thereafter communicate to others the identity of these most-closely-reflecting selected cards.
2. The kit of claim 1 wherein the planning is advance care planning, the person is a person considering the last portion of that person's life and the outcome is a final outcome.
3. The kit of claim 1 wherein the plurality of cards is from about 20 cards to about 50 cards and preferably is from about 25 cards to about 45 cards.
4. The kit or claim 1 wherein the depiction is selected from a verbal depiction, a graphic depiction or a combination verbal/graphic depiction.
5. A kit for focusing planning by or for a person including a plurality of cards the majority of these cards each bearing a depiction of a different outcome potentially desired by the person and the remainder of the cards being wild cards not bearing a depiction of a different final outcome but to which the person and/or another acting in that person's behalf can ascribe a final outcome identified by the person but not reflected in the different outcomes borne by the majority cards and instructions to the person and/or another acting in that person's behalf to select from that plurality of cards those cards which most closely reflect the outcomes desired by the person and to thereafter communicate to others the identity of these most-closely-reflecting selected cards.
6. The kit of claim 5 wherein the planning is advance care planning, the person is a person considering the last portion of that person's life and the outcome is a final outcome.
7. The kit of claim 6 wherein the plurality of cards is from about 20 cards to about 50 cards and wherein the remainder of the cards is from one to about ten cards.
8. The kit of claim 1 or claim 5 wherein the instructions further include instructions to the person and/or another acting in that person's behalf to select from that plurality of cards those cards which least closely reflect the outcomes desired by the person and to thereafter communicate to others the identity of these least-closely-reflecting selected cards.
9. The kit of claim 8 wherein the instructions further include instructions to the person and/or another acting in that person's behalf to select or select and rank the about ten cards as to which most closely reflect the outcomes desired by the person and to thereafter communicate to others the selection and/or rankings of the about ten cards.
10. The kit of claim 1 or claim 5 wherein the others to whom the identify of cards is communicated includes one or more persons selected from family members and potential agents.
11. The kit of claim 11 wherein the agent is a health care agent and wherein the planning is medical care advance directive planning and the outcome is a final outcome.
12. A kit for focusing and communicating to a potential agent planning by or for a person, the kit including two or more at least substantially identical decks of cards, each of which decks includes a plurality of cards, each card bearing a depiction of a different outcome potentially desired by the person and instructions to that person and/or to another acting in that person's behalf to select from a first deck of cards those cards which most closely reflect the outcomes desired by that person and to thereafter communicate to the potential agent the identity of these most-closely-reflecting selected cards and instructions to the potential agent to select from the second deck of cards those cards which to the potential agent most closely reflect the outcomes desired by that person and to thereafter communicate to the person and/or to another acting in that person's behalf the identity of these cards selected as most-closely-reflecting by the potential agent.
13. The kit of claim 12 wherein the agent in a healthcare agent, the planning is advance care planning, the person is a person considering the last portion of that person's life and the outcome is a final outcome.
14. A kit for use in focusing and communicating to an agent planning by or for a person the kit including two or more at least substantially identical decks of cards, each of which decks includes a plurality of cards, the majority of these cards each bearing a depiction of a different outcome potentially desired by the person and the remainder of the cards being wild cards not bearing a different outcome but to which the person and/or another acting in the person's behalf or the agent can ascribe an outcome not reflected in the different outcomes borne by the majority cards and instructions to the person and/or to another acting in that person's behalf to select from that plurality of cards those cards which most closely reflect the outcomes desired by the person and to thereafter communicate to the potential agent the identity of these most-closely-reflecting selected cards and instructions to the agent to select from the second deck of cards those cards which to the agent most closely reflect the outcomes desired by that person and to thereafter communicate to the person and/or to another acting in that person's behalf the identity of these cards selected as most-closely-reflecting by the agent.
15. The kit of claim 14 wherein the planning is advance care planning, the person is a person considering the last portion of that person's life, the outcome and outcomes are is a final outcome or finial outcomes and the agent is a potential health care agent.
16. The kit of claim 15 wherein the instructions to the person and/or another acting in that person's behalf and to the potential health care agent additionally call for the person and/or another on the one hand and the potential health care agent on the other hand to compare the cards selected by both parties and to discuss how the cards selected by the person and/or another acting in that person's behalf agree with or differ from those selected by the potential health care agent.
17. The kit of claim 16 wherein the instructions further call for the parties to attempt to arrive at a consensus of cards based on their respective selections.
18. The kit of claim 16 wherein the plurality of cards is from about 20 cards to about 50 cards and the remainder of the cards is from one to about ten cards.
19. The kit of claim 16 wherein the instructions further include instructions to the person and/or to another acting in that person's behalf to select from that person's plurality of cards those cards which least closely reflect the final outcomes desired by the person and to thereafter communicate to the potential health care agent the identity of these least-closely-reflecting selected cards.
20. The kit of claim 19 wherein the instructions further include instructions to the potential health care agent to select from the potential health care agent's plurality of cards those cards which least closely reflect the final outcomes desired by the person and to thereafter communicate to the person the identity of these least-closely-reflecting selected cards.
21. The kit of claim 20 wherein the instructions further include instructions to the person and/or person acting in that person's behalf and/or to the potential health care agent to identify about ten cards which are considered to most closely reflect the final outcomes desired by the person and to thereafter communicate to the other the identity of the about ten cards.
22. The kit of claim 21 wherein the instructions further include instructions to the person and/or another acting in that person's behalf and/or to the potential health care agent to rank the about ten cards as to which most closely reflect the final outcomes desired by the person and to thereafter communicate to the others the rankings of the about ten cards to the other.
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