Opinion
VIEWPOINT
Jared Chiarchiaro, MD Division of Pulmonary, Allergy, and Critical Care Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania; and Clinical Research, Investigation, and Systems Modeling of Acute Illness (CRISMA) Center, Department of Critical Care Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania. Robert M. Arnold, MD Section of Palliative Care and Medical Ethics, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania. Douglas B. White, MD Clinical Research, Investigation, and Systems Modeling of Acute Illness (CRISMA) Center, Department of Critical Care Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania.
Corresponding Author: Jared Chiarchiaro, MD, 3459 Fifth Ave, 628 NW, University of Pittsburgh, Pittsburgh, PA 15213 (chiarchiaroj @upmc.edu).
Reengineering Advance Care Planning to Create Scalable, Patient- and Family-Centered Interventions The Institute of Medicine (IOM) report Dying in America concluded that patients near the end of life often receive undesired, burdensome treatments and called for improvements in advance care planning to ensure that patients’ values guide medical care.1 There is no clear path to accomplish this because there are major shortcomings to existing advance care planning. First, traditional advance directives are often narrowly focused on treatment preferences that are difficult to apply in many clinical situations. The second approach, facilitated advance care planning, is resource intensive and thus difficult to scale up to meet increasing demand. In this Viewpoint, we propose 2 interrelated strategies to create the next generation of advance care planning tools: (1) leveraging web-based technologies to create online interventions and (2) using the science of user-centered design to ensure that advance care planning meets the needs of patients, families, and clinicians.
Existing Models of Advance Care Planning and Their Limitations Traditional advance care planning focuses on the completion of legal documents—advance directives— to specify future treatment preferences and designate a surrogate. In theory, these documents are easy to complete and disseminate. In practice, they have
giver psychological outcomes and increased likelihood that patients’ preferences were followed.3 However, this approach is unlikely to accomplish the IOM’s goals because it is extremely difficult to scale up to meet the needs of large populations and because it requires major investment of resources and time to hire, train, and maintain a cadre of facilitators to perform multiple counseling sessions.
Strategies to Improve Advance Care Planning The next generation of advance care planning interventions should be both more ambitious than legalistic advance directives and more easily disseminated than facilitated advance care planning. Development of engaging, interactive web-based tools may help patients clarify values, help families prepare for the role of surrogate, and help communicate information to clinicians at the point of care. One effort that has capitalized on some of these precepts and shown encouraging results in elderly patients is the PREPARE website.4 The way forward is to aggressively leverage principles of user-centered design.
Advance Care Planning Tools Should Leverage Web-Based Technologies
A web-based approach is promising because it is both scalable and sufficiently robust to allow patients to describe their values in enough detail to be helpful to clinicians. Development of web-based advance Th e m ove f r o m p a p e r- b a s e d advance directives to web-based techcare planning should be guided by nology is consistent with a general sociprinciples … in which designers work etal trend. First, Internet use is increasing, especially among older Americans, with users to develop a product usable who increasingly participate in activities by diverse groups in the real world. such as online shopping. Second, webbased tools already help with medical had limited effect for a variety of reasons2 : (1) low issues traditionally managed in person; eg, depression.5 completion rates; (2) the forms focus on legalistic lan- Third, cloud-based tools allow easy access to informaguage about treatment preferences that often do not tion and have, in the financial sector, been shown to be apply in clinical situations and do not help patients secure. clarify their values; (3) the forms do not foster the Additionally, web-based tools may improve needed awareness and preparation among families to access at minimal cost compared with facilitator trainact as surrogates; and (4) the forms are difficult to inte- ing and maintenance. New functionality could be grate with clinical care and usually are not available added based on user feedback. For example, patients when needed. and families may want to talk to others in similar situaIn response to these shortcomings, facilitated tions, and the web can accommodate chat rooms and advance care planning has been developed in which Internet support groups—difficult modifications in a trained facilitators serially engage with patients and clinician’s office. families to aid patients in reflecting on goals and valWeb-based technology also could overcome barriues, documenting their preferences, and sharing with ers to high-quality advance care planning. First, interactheir families. This approach is important progress, tive, multimedia aspects could motivate people to comand a randomized trial demonstrated improved care- plete an advance directive. Stories of how advance care
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(Reprinted) JAMA March 17, 2015 Volume 313, Number 11
Copyright 2015 American Medical Association. All rights reserved.
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1103
Opinion Viewpoint
planning helped decrease family grief may motivate people to consider their end-of-life goals and share those goals with family. Second, web-based approaches could overcome problems with affective forecasting, whereby people fail to envision their capacity to adapt to future changes in health, by showing videos of what life may be like in different health states. This visualization may allow patients to form more realistic beliefs about their future.6 Another issue is that advance directives are cumbersome to update as patients’ preferences evolve. Web-based documentation is accessible and could provide an efficient way for patients to periodically reappraise their options, which helps ensure that the documentation reflects the patient’s values. Third, web-based tools could accommodate interactive exercises for patients and families such as ranking or weighing of values that are associated with a better decision-making experience.7 Results of the exercises could be sent to significant others with proposed questions for discussion. This is analogous to the “flipped classroom,” where students work on their own time, followed by more focused time for problem solving with an instructor.8 The efficiency of this approach is important because the 50 million Americans who are enrolled in Medicare will likely soon be covered for end-of-life conversations with their physician.
User-Centered Design Should Guide Web-Based Development Advance care planning tools have to be many things to many people. Patients need encouragement to think about their values if they become sicker and to talk with their families or significant others. Families need both self-efficacy for the surrogate role and substantive knowledge of the patient’s values and preferences. Clinicians need to know the patient’s values in enough detail to help the surrogate operationalize them. In addition, tools must be easy for ARTICLE INFORMATION Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported. Funding/Support: Dr White was supported by a Greenwall faculty scholars award in bioethics. Role of the Funder/Sponsor: The funder had no role in the preparation, review, or approval of the manuscript or decision to submit the manuscript for publication. REFERENCES 1. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: Institute of Medicine; September 2014.
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patients and families to use and available to clinicians wherever they see patients. Development of web-based advance care planning should be guided by principles of user-centered design—a multistage process in which designers work closely with users to develop a product that is usable by diverse groups in the real world. This involves investigating users’ needs, iteratively designing and testing multiple prototypes with the target users, and testing the final design to verify that it meets users’ goals. This process is important because it is difficult to understand how different individuals will use a product or what they are thinking. This approach both produces websites that are easier to use and increases users’ participation compared with other websites.9 For example, clinicians need useful and accessible reports on patients’ values and end-of-life goals. Designers might ask clinicians the following: (1) What information would you like about patients’ goals and values? and (2) How would you like to access this information? Second, designers create a prototype and have clinicians use it while talking aloud about what they like and what they do not like, followed by rating acceptability and usability. Then designers iteratively refine the prototype based on the feedback and continue testing with clinicians until an acceptable, userfriendly product is created. With web-based prototypes like these, the user interface can evolve into the finished product with the help of trained user interface designers, and the back-end implementation can be developed in parallel by professional software engineers. The next generation of advance care planning tools should be highly scalable and more ambitious than narrow advance directives. Using web-based technologies designed with cutting-edge principles of user-centered design could help to propel advance care planning into the 21st century.
2. Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Cent Rep. 2004;34(2):30-42. 3. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345. 4. Sudore RL, Knight SJ, McMahan RD, et al. A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study. J Pain Symptom Manage. 2014;47(4):674-686. 5. Kaltenthaler E, Papaioannou D, Boland A, Dickson R. The National Institute for Health and Clinical Excellence Single Technology Appraisal process: lessons from the first 4 years. Value Health. 2011;14(8):1158-1165.
7. Abhyankar P, Bekker HL, Summers BA, Velikova G. Why values elicitation techniques enable people to make informed decisions about cancer trial participation. Health Expect. 2011;14(suppl 1):20-32. 8. Day JA, Foley JD. Evaluating a web lecture intervention in a human-computer interaction course. IEEE Trans Educ. 2006;49(4):420-431. doi: 10.1109/TE.2006.879792. 9. Coleman R, Lieber P, Mendelson AL, Kurpius DD. Public life and the Internet: if you build a better website, will citizens become engaged? New Media Soc. 2008;10(2):179-201. doi:10.1177 /1461444807086474.
6. Ng CJ, Lee YK, Lee PY, Abdullah KL. Health innovations in patient decision support: bridging the gaps and challenges. Australas Med J. 2013;6 (2):95-99.
JAMA March 17, 2015 Volume 313, Number 11 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a University of North Dakota User on 05/15/2015
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VIEWPOINT
Jared Chiarchiaro, MD Division of Pulmonary, Allergy, and Critical Care Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania; and Clinical Research, Investigation, and Systems Modeling of Acute Illness (CRISMA) Center, Department of Critical Care Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania. Robert M. Arnold, MD Section of Palliative Care and Medical Ethics, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania. Douglas B. White, MD Clinical Research, Investigation, and Systems Modeling of Acute Illness (CRISMA) Center, Department of Critical Care Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania.
Corresponding Author: Jared Chiarchiaro, MD, 3459 Fifth Ave, 628 NW, University of Pittsburgh, Pittsburgh, PA 15213 (chiarchiaroj @upmc.edu).
Reengineering Advance Care Planning to Create Scalable, Patient- and Family-Centered Interventions The Institute of Medicine (IOM) report Dying in America concluded that patients near the end of life often receive undesired, burdensome treatments and called for improvements in advance care planning to ensure that patients’ values guide medical care.1 There is no clear path to accomplish this because there are major shortcomings to existing advance care planning. First, traditional advance directives are often narrowly focused on treatment preferences that are difficult to apply in many clinical situations. The second approach, facilitated advance care planning, is resource intensive and thus difficult to scale up to meet increasing demand. In this Viewpoint, we propose 2 interrelated strategies to create the next generation of advance care planning tools: (1) leveraging web-based technologies to create online interventions and (2) using the science of user-centered design to ensure that advance care planning meets the needs of patients, families, and clinicians.
Existing Models of Advance Care Planning and Their Limitations Traditional advance care planning focuses on the completion of legal documents—advance directives— to specify future treatment preferences and designate a surrogate. In theory, these documents are easy to complete and disseminate. In practice, they have
giver psychological outcomes and increased likelihood that patients’ preferences were followed.3 However, this approach is unlikely to accomplish the IOM’s goals because it is extremely difficult to scale up to meet the needs of large populations and because it requires major investment of resources and time to hire, train, and maintain a cadre of facilitators to perform multiple counseling sessions.
Strategies to Improve Advance Care Planning The next generation of advance care planning interventions should be both more ambitious than legalistic advance directives and more easily disseminated than facilitated advance care planning. Development of engaging, interactive web-based tools may help patients clarify values, help families prepare for the role of surrogate, and help communicate information to clinicians at the point of care. One effort that has capitalized on some of these precepts and shown encouraging results in elderly patients is the PREPARE website.4 The way forward is to aggressively leverage principles of user-centered design.
Advance Care Planning Tools Should Leverage Web-Based Technologies
A web-based approach is promising because it is both scalable and sufficiently robust to allow patients to describe their values in enough detail to be helpful to clinicians. Development of web-based advance Th e m ove f r o m p a p e r- b a s e d advance directives to web-based techcare planning should be guided by nology is consistent with a general sociprinciples … in which designers work etal trend. First, Internet use is increasing, especially among older Americans, with users to develop a product usable who increasingly participate in activities by diverse groups in the real world. such as online shopping. Second, webbased tools already help with medical had limited effect for a variety of reasons2 : (1) low issues traditionally managed in person; eg, depression.5 completion rates; (2) the forms focus on legalistic lan- Third, cloud-based tools allow easy access to informaguage about treatment preferences that often do not tion and have, in the financial sector, been shown to be apply in clinical situations and do not help patients secure. clarify their values; (3) the forms do not foster the Additionally, web-based tools may improve needed awareness and preparation among families to access at minimal cost compared with facilitator trainact as surrogates; and (4) the forms are difficult to inte- ing and maintenance. New functionality could be grate with clinical care and usually are not available added based on user feedback. For example, patients when needed. and families may want to talk to others in similar situaIn response to these shortcomings, facilitated tions, and the web can accommodate chat rooms and advance care planning has been developed in which Internet support groups—difficult modifications in a trained facilitators serially engage with patients and clinician’s office. families to aid patients in reflecting on goals and valWeb-based technology also could overcome barriues, documenting their preferences, and sharing with ers to high-quality advance care planning. First, interactheir families. This approach is important progress, tive, multimedia aspects could motivate people to comand a randomized trial demonstrated improved care- plete an advance directive. Stories of how advance care
jama.com
(Reprinted) JAMA March 17, 2015 Volume 313, Number 11
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a University of North Dakota User on 05/15/2015
1103
Opinion Viewpoint
planning helped decrease family grief may motivate people to consider their end-of-life goals and share those goals with family. Second, web-based approaches could overcome problems with affective forecasting, whereby people fail to envision their capacity to adapt to future changes in health, by showing videos of what life may be like in different health states. This visualization may allow patients to form more realistic beliefs about their future.6 Another issue is that advance directives are cumbersome to update as patients’ preferences evolve. Web-based documentation is accessible and could provide an efficient way for patients to periodically reappraise their options, which helps ensure that the documentation reflects the patient’s values. Third, web-based tools could accommodate interactive exercises for patients and families such as ranking or weighing of values that are associated with a better decision-making experience.7 Results of the exercises could be sent to significant others with proposed questions for discussion. This is analogous to the “flipped classroom,” where students work on their own time, followed by more focused time for problem solving with an instructor.8 The efficiency of this approach is important because the 50 million Americans who are enrolled in Medicare will likely soon be covered for end-of-life conversations with their physician.
User-Centered Design Should Guide Web-Based Development Advance care planning tools have to be many things to many people. Patients need encouragement to think about their values if they become sicker and to talk with their families or significant others. Families need both self-efficacy for the surrogate role and substantive knowledge of the patient’s values and preferences. Clinicians need to know the patient’s values in enough detail to help the surrogate operationalize them. In addition, tools must be easy for ARTICLE INFORMATION Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported. Funding/Support: Dr White was supported by a Greenwall faculty scholars award in bioethics. Role of the Funder/Sponsor: The funder had no role in the preparation, review, or approval of the manuscript or decision to submit the manuscript for publication. REFERENCES 1. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: Institute of Medicine; September 2014.
1104
patients and families to use and available to clinicians wherever they see patients. Development of web-based advance care planning should be guided by principles of user-centered design—a multistage process in which designers work closely with users to develop a product that is usable by diverse groups in the real world. This involves investigating users’ needs, iteratively designing and testing multiple prototypes with the target users, and testing the final design to verify that it meets users’ goals. This process is important because it is difficult to understand how different individuals will use a product or what they are thinking. This approach both produces websites that are easier to use and increases users’ participation compared with other websites.9 For example, clinicians need useful and accessible reports on patients’ values and end-of-life goals. Designers might ask clinicians the following: (1) What information would you like about patients’ goals and values? and (2) How would you like to access this information? Second, designers create a prototype and have clinicians use it while talking aloud about what they like and what they do not like, followed by rating acceptability and usability. Then designers iteratively refine the prototype based on the feedback and continue testing with clinicians until an acceptable, userfriendly product is created. With web-based prototypes like these, the user interface can evolve into the finished product with the help of trained user interface designers, and the back-end implementation can be developed in parallel by professional software engineers. The next generation of advance care planning tools should be highly scalable and more ambitious than narrow advance directives. Using web-based technologies designed with cutting-edge principles of user-centered design could help to propel advance care planning into the 21st century.
2. Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Cent Rep. 2004;34(2):30-42. 3. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345. 4. Sudore RL, Knight SJ, McMahan RD, et al. A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study. J Pain Symptom Manage. 2014;47(4):674-686. 5. Kaltenthaler E, Papaioannou D, Boland A, Dickson R. The National Institute for Health and Clinical Excellence Single Technology Appraisal process: lessons from the first 4 years. Value Health. 2011;14(8):1158-1165.
7. Abhyankar P, Bekker HL, Summers BA, Velikova G. Why values elicitation techniques enable people to make informed decisions about cancer trial participation. Health Expect. 2011;14(suppl 1):20-32. 8. Day JA, Foley JD. Evaluating a web lecture intervention in a human-computer interaction course. IEEE Trans Educ. 2006;49(4):420-431. doi: 10.1109/TE.2006.879792. 9. Coleman R, Lieber P, Mendelson AL, Kurpius DD. Public life and the Internet: if you build a better website, will citizens become engaged? New Media Soc. 2008;10(2):179-201. doi:10.1177 /1461444807086474.
6. Ng CJ, Lee YK, Lee PY, Abdullah KL. Health innovations in patient decision support: bridging the gaps and challenges. Australas Med J. 2013;6 (2):95-99.
JAMA March 17, 2015 Volume 313, Number 11 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a University of North Dakota User on 05/15/2015
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