Beyond Norman: The Application of Technology for
Cooperative Work at the End of Life
Kathy A. Johnson RN, MS
University of Wisconsin - Madison
Madison, Wisconsin, USA
kajohnson25@wisc.edu
ABSTRACT
The intersection of studies of human computer interaction
(HCI) and end of life care represents a rich and uncharted
territory for research and has great potential to improve
quality of care to the dying and their families. This paper
conceptualizes end of life care as a collaborative work
system. Technology applications designed to facilitate
communication and coordinate care at this time require the
recognition of multiple actors. A critical viewpoint that has
not yet been represented in this dialogue is the first-person
patient voice, the patient narrative. This paper suggests the
need for a technology application and the HCI community
to help present this voice, particularly at the end of life. A
brief review of end of life research and current technology
applications, and the value of patient narrative from the
perspective of a health care provider working in this
collaborative work system are presented.
Author Keywords
End of life, HCI, patient narrative, coordination theory,
cooperative work.
ACM Classification Keywords
H5.m. Information interfaces and presentation (e.g., HCI):
Miscellaneous.
INTRODUCTION
This paper conceptualizes the coordination of end of life
care as a cooperative work system, rather than as a model of
provided services. The personal health record (PHR) is
suggested as a vehicle for this system. Though often
thought of as a passive repository of data or events, the
PHR can also function as a working bulletin board of
information, both from patients to providers, as well as
between health care providers.
Coordination theory, a
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CHI 2009, April 4–9, 2009, Boston, Massachusetts, USA.
Copyright 2009 ACM 978-1-60558-246-7/09/04...$5.00.
Patricia Flatley Brennan RN, PhD, FACMI
University of Wisconsin - Madison
Madison, Wisconsin, USA
pbrennan@engr.wisc.edu
posited framework for computer-supported cooperative
work, is used here to help guide both health care
practitioner and HCI efforts in improving end of life care.
Defined as a body of principles about how activities can be
coordinated and work together harmoniously [1],
components and processes of coordination theory will be
applied to an envisioned technology application.
A critical viewpoint that has not yet been represented in this
system is the first-person patient voice as a contributing
part of this system. This paper suggests the need for a
technology application and the HCI community to help
present this voice, a valuable and untapped asset,
particularly at the end of life.
END OF LIFE RESEARCH
A National Institutes of Health 2004 State of the Science
Report on End of Life care highlighted communication as
critical to the improvement of end of life (EOL) care [2].
This remains an unresolved issue as ineffective
communication is still linked to discordance between
physicians and patients on the understood diagnosis, the
variety of care options discussed, preferences for pain
management and place of death [3]. Poor communication
has resulted in more aggressive care, difficult bereavement
[4] and greater health care costs in the last week of life [5].
Besides being an inherently difficult topic to both discuss
and research, there is a lack of a clear definition of an EOL
discussion and no prevailing theoretical framework guiding
EOL research or intervention efforts. Is an EOL discussion
the explanation of a prognosis, the turning point in an
illness, the creation of an advanced directive, or a
discussion about resuscitation status? Besides the patient
(who may or may not be competent for decision-making),
there are multiple viewpoints to consider: general practice
physician, a choir of health care specialists, family
members close and distant, significant others who are not
biological “family”. Though three recent theoretical
frameworks have been posited [6-8], no model has
incorporated all stakeholders and their dynamic states,
while recognizing the fluidity between the temporal stages
of illness.
Most efforts in this area of EOL communication have
focused on advanced care planning.
Unfortunately,
thoughts about and/or the completion of advance care
planning often aren’t communicated to the provider to
affect decisions, or have been described by clinicians as
unhelpful in truly guiding care [9-10]. Some researchers
contend that the concept of advance care planning itself is
flawed, because it presumes more control over the future
than is realistic [11] or that the decision is one that develops
over time and has distinct steps [12]. Other efforts to
improve EOL communication have focused on
interventions to educate the provider in communication
skills [13], or on interventions that encourage patient
participation during consultations [14-15].
CaringBridge [16] and Go Wish [17] are two consumer
applications developed in response to a recognized need for
communication in serious illness. While welcomed by
patients and family members, they are of limited use in
directing care, as the information they provide is not readily
available to health care providers for care coordination and
management. Like patient peer support websites, they are
applications operating outside of the care system.
THE PATIENT VOICE THROUGH NARRATIVE
In support of Massimi’s and Charise’s [18] call for
humanistic inquiry to inform HCI developers, the arts have
indeed been used for both description and interventional
research in this area. The personal benefit of telling one’s
own story of illness has been described as vital to wellbeing
[19-21]. Advanced cancer patients have used personal
narrative to relate difficult, painful, or complex experiences.
These individuals describe this opportunity as “a safety
zone in which they could articulate their interpretations of
costs and benefits in end of life care, as well as a place in
which they could express their need for control over their
health and health care” [22, p.50]. The use of narrative, the
expressive arts and ritual to create meaning and connection
are powerfully therapeutic and transformative for patients
and families alike [23]. Cancer patients whose written
narratives had high emotional disclosure had significantly
less pain and reported higher well-being scores than
patients whose narratives were less emotional [24].
Further humanistic work in this area is found in patient
expression of illness or the illness experience through
pictures or graphics [25,26]. Though these have not been
specifically used at end of life, it is not hard to imagine an
application in a PHR that would allow a patient created
graphic representation of self or the self in illness as a
contribution to a dialogue about symptom management,
quality of life, or a future direction of care.
Besides the overall chronic illness experience, narratives
have been used to describe the moment of diagnosis [27-28]
and key transition points [29]. “MiLivingStory”, currently
under evaluation, uses a dedicated social networking site to
create a personal legacy. This narrative and web-based
social networking intervention is designed to reduce
psychological distress and promote existential well-being
among patients with life-threatening cancer. A dignity-
enhancing life story is elicited during an expert-guided
telephone interview and an edited life manuscript is posted
to the patient’s private personalized website [30]. This life
review work is important for patient and family member
alike as together they mentally prepare for dying and death.
COORDINATION THEORY
PATIENT NARRATIVE
AND
DESIGNING
FOR
The framework of Malone and Crowston is based on four
levels of coordination processes: perception of common
objects, communication, group decision-making, and finally
coordination [1]. Each of these levels is described as having
different generic processes and components functioning
within them. Higher levels are dependent upon the
functioning of lower ones, e.g., coordination is dependent
on the generic group decision-making processes, and that
the group decision-making processes are in turn dependent
upon communication, etc. It is similar to the “Knowledge
Hierarchy” that represents a functional relationship between
data, information knowledge and wisdom in that patient
narrative symbolizes a piece of usable data upon which
information (communication), knowledge (decisionmaking) and wisdom (coordination) can be built. Beginning
at the “bottom” of the list with the most basic components,
the collaborative system needs of each level will be
highlighted.
Perception of Common Objects
The generic processes that Malone and Crowston refer to in
this level include seeing the same physical objects, and
accessing shared databases. Patient narrative represents a
common object that can be used by others, yet allows
therapeutic benefit in its own creation.
Patient narrative needs to be created through a technology
application that allows expression through different
mediums: typed text, stylus entered text or graphics
(through a tablet-type surface), voice recording or MP3
snippets, or video images—applications that are consistent
with the mental models through which these artistic
endeavors are performed without technology. A system
that includes a patient narrative, however it is expressed,
provides valuable information for guiding care by bringing
forth and displaying this data.
Communication
The establishment of a common language, and the routing
and delivering of messages are examples of the generic
processes of this level.
A collaborative system including patient narrative will
require a way for the patient to experience the therapeutic
benefits of the creation of narrative, and be able to control
the use of that data via permissions and privacy settings.
The patient may find it useful to deliver a message to the
system about a wish to stop radiation treatments, or at least
bring that up for discussion, knowing that the spouse may
not be ready to hear or participate in discussions about that
yet.
Because dying is such a sensitive and difficult subject,
euphemisms, fuzzy descriptions and medical-ese are
commonplace, complicating meaningful communication. A
collaborative system could foster communication that could
be referred to outside of the medical consultation—a less
rushed and stressful time. The provider could monitor the
patient narrative (as permitted), assessing understanding,
readiness, and coping.
Group Decision-making – Decisions Using Patient
Narrative
This level involves goals, actors, alternatives, evaluations,
and choices—all tasks.
The critical link between
communication and its effect on decision-making at EOL
was discussed earlier. Patient narrative as part of this
system will help serve as an indicator of understanding and
to clarify wishes in regards to advance care planning—a
better representation of wishes than the one time signing of
a document. It needs to be flexible, as uncertainty and the
unexpected are part of the illness experience for patient,
family member and clinician(s) alike. The ability to change
your mind is possible with technology applications.
Coordination
systems? In Proc. CSCW 1990, ACM Press (1990), 357370.
2. NIH State-Of-The-Science Conference Statement on
Improving End-Of-Life Care. NIH Consens State Sci
Statements, 21,3, (2004), 1-26.
3. DesHarnais, S., Carter, R. E., Hennessy, W., Kurent, J.
E., & Carter, C. Lack of concordance between physician
and patient: Reports on end-of-life care discussions. J
Palliat Med, 10,3 (2007), 728-40.
4. Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice,
E., Balboni, T., et al. Associations between end-of-life
discussions, patient mental health, medical care near
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5. Zhang, B., Wright, A. A., Huskamp, H. A., Nilsson, M.
E., Maciejewski, M. L., Earle, C. C., et al. Health care
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This highest level includes identifying goals, ordering
activities, assigning activities, allocating resources,
synchronizing activities – all tasks recognized as
coordinating. The ultimate goal of this cooperative work is
quality dying and death as determined by the patient. The
developmental work of dying, including life review for the
patient and family, and bereavement preparation are
increasingly recognized as elements of a “good death”. The
patient narrative in this system needs to be able to support
other resources to accomplish these multiple tasks.
7. Radwany, S., Albanese, T., Clough, L., Sims, L.,
Mason, H., & Jahangiri, S. End-Of-Life decision
making and emotional burden: Placing family meetings
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CONCLUSION
9. Bakitas, M., Ahles, T. A., Skalla, K., Brokaw, F. C.,
Byock, I., Hanscom, B., et al. Proxy perspectives
regarding end-of-life care for persons with cancer.
Cancer, 112,8 (2008), 1854-61.
The conceptualization of end of life care as a collaborative
work system capitalizes on the inherent value of the
creation and use of patient narrative. By listening to the
first-person voice of the patient the provider can invite
dialogue, hear opinion, assess understanding, highlight
problems with coping or personal relationships, or identify
teachable moments. The patient can experience the
therapeutic benefits of the creation of their narratives. The
wish list of this envisioned application requires the HCI
community to facilitate the use by patient, family member
and clinician. Patient narrative within a personal health
record can foster a collaborative and cooperative system
that improves end of life care.
ACKNOWLEDGMENTS
We thank the UW Madison HealthSystems Research Lab
for their helpful comments in the preparation of this
document.
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