U.S. patent application number 12/013336 was filed with the patent office on 2009-07-16 for kit for facilitating conversations.
Invention is credited to Elizabeth S. Menkin.
Application Number | 20090179381 12/013336 |
Document ID | / |
Family ID | 40849954 |
Filed Date | 2009-07-16 |
United States Patent
Application |
20090179381 |
Kind Code |
A1 |
Menkin; Elizabeth S. |
July 16, 2009 |
KIT FOR FACILITATING CONVERSATIONS
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.
Inventors: |
Menkin; Elizabeth S.; (San
Jose, CA) |
Correspondence
Address: |
JULIE GROVES
147 VISTA DEL MONTE
LOS GATOS
CA
95030-6335
US
|
Family ID: |
40849954 |
Appl. No.: |
12/013336 |
Filed: |
January 11, 2008 |
Current U.S.
Class: |
273/299 ;
273/308 |
Current CPC
Class: |
G09B 19/22 20130101;
A63F 2001/0441 20130101; A63F 1/00 20130101 |
Class at
Publication: |
273/299 ;
273/308 |
International
Class: |
A63F 1/00 20060101
A63F001/00 |
Claims
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.
Description
FIELD OF INVENTION
[0001] 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
[0002] 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.
[0003] The 1990 Patient Self-Determination Act (PSDA).sup.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..sup.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..sup.3, 4, 5
.sup.1 PUBL010-508, 1990..sup.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..sup.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/lastacts.sup.4 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..sup.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/Modules.sub.--03.pdf
[0004] The Bill Moyers television series "On Our Own Terms".sup.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,.sup.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?".sup.6
http://www.pbs.org/wnet/onourownterms/2000, Educational
Broadcasting Corporation/Public Affairs Television, Inc. Accessed
Oct. 11, 2006.sup.7 A Coda is a final passage in a piece of music,
summing up preceding themes and bringing the piece to a harmonious
conclusion.
[0005] Coda Alliance started with promoting Advance Health Care
Directives, modeled on the La Crosse community outreach
project,.sup.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. .sup.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.
[0006] Coda Alliance also trained physicians in the basics of
end-of-life care using the EPEC curriculum..sup.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!".sup.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)
[0007] 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.
[0008] 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..sup.10 .sup.10 Menkin, E, Go Wish:
A tool for "the conversation". Journal of Palliative Medicine April
2007.
[0009] 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
[0010] 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.
[0011] 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.
[0012] 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.
[0013] 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.
[0014] 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.
[0015] 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.
[0016] 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.
[0017] 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.
[0018] 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.
[0019] 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.
[0020] 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
[0021] This invention will be further described with reference
being made to the accompanying drawings in which:
[0022] FIG. 1 is a representation of obverse and reverse views of
some of the cards used in the kit of the invention;
[0023] FIGS. 2 and 3 are representations of typical sheets of
instructions provided in the kits of this invention; and
[0024] 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
[0025] 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..sup.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. .sup.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.
[0026] 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.
[0027] 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.
[0028] The preprinted cards each include a different single
end-of-life goal. Examples of these goals listed on the cards may
include-- [0029] "To have my financial affairs in order" [0030] "To
be free from anxiety" [0031] "To be free from pain" [0032] "To
pray" [0033] "Not being short of breath" [0034] "Not dying alone"
[0035] "To be able to help others" [0036] "To feel that my life is
complete" [0037] "To have an advocate who knows my priorities'" "To
maintain my dignity" [0038] "To have close friends near" [0039] "To
prevent arguments by making sure that my family knows what I want"
[0040] "To be treated the way I want" [0041] "To keep my sense of
humor" [0042] "To have my family prepared for my death" [0043] "To
be able to talk about what scares me" [0044] "To die at home"
[0045] "To be at peace with God"
[0046] 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.
[0047] 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.
[0048] 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.
[0049] 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.
[0050] 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.
[0051] 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.
[0052] 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.
[0053] 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.
[0054] 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.
[0055] 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
31/2 to 4 inches long by about 21/2 to about 27/8 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`.
[0056] 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.
[0057] 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.
[0058] 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.
[0059] 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?".sup.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. .sup.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
[0060] The ICU Patient
[0061] 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.
[0062] 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.
[0063] 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.
[0064] 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.
[0065] 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.
[0066] Sorting the Family's Issues
[0067] 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.
[0068] 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.
[0069] 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.
[0070] 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.
[0071] 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.
[0072] 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.
[0073] A Different Side of Mom
[0074] 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.
[0075] 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.
[0076] Comparing in Pairs
[0077] 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.
[0078] "Aha" Comes Later
[0079] 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."
[0080] The Unbefriended--Introducing Hospice
[0081] 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.
[0082] In answer to the 'tell me what you understand about your
illness' question,.sup.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.".sup.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.
[0083] 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.
[0084] 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.
[0085] 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.
[0086] 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
[0087] The Assisted Living Education in Palliative and Hospice Care
(ALEPH Care) project was made possible by a grant from the
Archstone Foundation.
[0088] A community services grant from Kaiser Foundation partly
funded the production costs of the cards.
* * * * *
References