Beyond Norman: The Application of Technology for Cooperative Work at the End of Life Kathy A. Johnson RN, MS Patricia Flatley Brennan RN, PhD, FACMI University of Wisconsin - Madison University of Wisconsin - Madison Madison, Wisconsin, USA Madison, Wisconsin, USA [email protected] [email protected]

ABSTRACT posited framework for computer-supported cooperative The intersection of studies of human computer interaction work, is used here to help guide both health care (HCI) and end of life care represents a rich and uncharted practitioner and HCI efforts in improving end of life care. territory for research and has great potential to improve Defined as a body of principles about how activities can be quality of care to the dying and their families. This paper coordinated and work together harmoniously [1], conceptualizes end of life care as a collaborative work components and processes of coordination theory will be system. Technology applications designed to facilitate applied to an envisioned technology application. communication and coordinate care at this time require the recognition of multiple actors. A critical viewpoint that has A critical viewpoint that has not yet been represented in this not yet been represented in this dialogue is the first-person system is the first-person patient voice as a contributing patient voice, the patient narrative. This paper suggests the part of this system. This paper suggests the need for a need for a technology application and the HCI community technology application and the HCI community to help to help present this voice, particularly at the end of life. A present this voice, a valuable and untapped asset, brief review of end of life research and current technology particularly at the end of life. applications, and the value of patient narrative from the perspective of a health care provider working in this END OF LIFE RESEARCH A National Institutes of Health 2004 State of the Science collaborative work system are presented. Report on End of Life care highlighted communication as Author Keywords critical to the improvement of end of life (EOL) care [2]. End of life, HCI, patient narrative, coordination theory, This remains an unresolved issue as ineffective cooperative work. communication is still linked to discordance between physicians and patients on the understood diagnosis, the ACM Classification Keywords variety of care options discussed, preferences for pain H5.m. Information interfaces and presentation (e.g., HCI): management and place of death [3]. Poor communication Miscellaneous. has resulted in more aggressive care, difficult bereavement [4] and greater health care costs in the last week of life [5]. INTRODUCTION Besides being an inherently difficult topic to both discuss This paper conceptualizes the coordination of end of life and research, there is a lack of a clear definition of an EOL care as a cooperative work system, rather than as a model of discussion and no prevailing theoretical framework guiding provided services. The personal health record (PHR) is EOL research or intervention efforts. Is an EOL discussion suggested as a vehicle for this system. Though often the explanation of a prognosis, the turning point in an thought of as a passive repository of data or events, the illness, the creation of an advanced directive, or a PHR can also function as a working bulletin board of discussion about resuscitation status? Besides the patient information, both from patients to providers, as well as (who may or may not be competent for decision-making), between health care providers. Coordination theory, a there are multiple viewpoints to consider: general practice physician, a choir of health care specialists, family Permission to make digital or hard copies of all or part of this work for members close and distant, significant others who are not personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies biological “family”. Though three recent theoretical bear this notice and the full citation on the first page. To copy otherwise, frameworks have been posited [6-8], no model has or republish, to post on servers or to redistribute to lists, requires prior incorporated all stakeholders and their dynamic states, specific permission and/or a fee. while recognizing the fluidity between the temporal stages CHI 2009, April 4–9, 2009, Boston, Massachusetts, USA. Copyright 2009 ACM 978-1-60558-246-7/09/04...$5.00. 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 psychological distress and promote existential well-being planning often aren’t communicated to the provider to among patients with life-threatening cancer. A dignity- affect decisions, or have been described by clinicians as enhancing life story is elicited during an expert-guided unhelpful in truly guiding care [9-10]. Some researchers telephone interview and an edited life manuscript is posted contend that the concept of advance care planning itself is to the patient’s private personalized website [30]. This life flawed, because it presumes more control over the future review work is important for patient and family member than is realistic [11] or that the decision is one that develops alike as together they mentally prepare for dying and death. over time and has distinct steps [12]. Other efforts to improve EOL communication have focused on COORDINATION THEORY AND DESIGNING FOR interventions to educate the provider in communication PATIENT NARRATIVE skills [13], or on interventions that encourage patient The framework of Malone and Crowston is based on four participation during consultations [14-15]. levels of coordination processes: perception of common objects, communication, group decision-making, and finally CaringBridge [16] and Go Wish [17] are two consumer coordination [1]. Each of these levels is described as having applications developed in response to a recognized need for different generic processes and components functioning communication in serious illness. While welcomed by within them. Higher levels are dependent upon the patients and family members, they are of limited use in functioning of lower ones, e.g., coordination is dependent directing care, as the information they provide is not readily on the generic group decision-making processes, and that available to health care providers for care coordination and the group decision-making processes are in turn dependent management. Like patient peer support websites, they are upon communication, etc. It is similar to the “Knowledge applications operating outside of the care system. Hierarchy” that represents a functional relationship between data, information knowledge and wisdom in that patient THE PATIENT VOICE THROUGH NARRATIVE narrative symbolizes a piece of usable data upon which In support of Massimi’s and Charise’s [18] call for information (communication), knowledge (decision- humanistic inquiry to inform HCI developers, the arts have making) and wisdom (coordination) can be built. Beginning indeed been used for both description and interventional at the “bottom” of the list with the most basic components, research in this area. The personal benefit of telling one’s the collaborative system needs of each level will be own story of illness has been described as vital to wellbeing highlighted. [19-21]. Advanced cancer patients have used personal narrative to relate difficult, painful, or complex experiences. Perception of Common Objects These individuals describe this opportunity as “a safety The generic processes that Malone and Crowston refer to in zone in which they could articulate their interpretations of this level include seeing the same physical objects, and costs and benefits in end of life care, as well as a place in accessing shared databases. Patient narrative represents a which they could express their need for control over their common object that can be used by others, yet allows health and health care” [22, p.50]. The use of narrative, the therapeutic benefit in its own creation. expressive arts and ritual to create meaning and connection are powerfully therapeutic and transformative for patients Patient narrative needs to be created through a technology and families alike [23]. Cancer patients whose written application that allows expression through different narratives had high emotional disclosure had significantly mediums: typed text, stylus entered text or graphics less pain and reported higher well-being scores than (through a tablet-type surface), voice recording or MP3 patients whose narratives were less emotional [24]. snippets, or video images—applications that are consistent with the mental models through which these artistic Further humanistic work in this area is found in patient endeavors are performed without technology. A system expression of illness or the illness experience through that includes a patient narrative, however it is expressed, pictures or graphics [25,26]. Though these have not been provides valuable information for guiding care by bringing specifically used at end of life, it is not hard to imagine an forth and displaying this data. application in a PHR that would allow a patient created graphic representation of self or the self in illness as a Communication contribution to a dialogue about symptom management, The establishment of a common language, and the routing quality of life, or a future direction of care. and delivering of messages are examples of the generic Besides the overall chronic illness experience, narratives processes of this level. have been used to describe the moment of diagnosis [27-28] A collaborative system including patient narrative will and key transition points [29]. “MiLivingStory”, currently require a way for the patient to experience the therapeutic under evaluation, uses a dedicated social networking site to benefits of the creation of narrative, and be able to control create a personal legacy. This narrative and web-based the use of that data via permissions and privacy settings. social networking intervention is designed to reduce The patient may find it useful to deliver a message to the system about a wish to stop radiation treatments, or at least ACKNOWLEDGMENTS bring that up for discussion, knowing that the spouse may We thank the UW Madison HealthSystems Research Lab not be ready to hear or participate in discussions about that for their helpful comments in the preparation of this yet. document.

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