Innovations in End-of-Life Care
Shifting the Focus of Advance Care Planning:
[Citation: Briggs L. Shifting the focus of advance care planning: Using an in-depth interview to build and strengthen relationships. Innovations in End-of-Life Care. 2003;5(2): www.edc.org/lastacts.]
In joining the Respecting Choices® Advance Care Planning (ACP) team at Gundersen Lutheran Medical Center in La Crosse, Wisconsin almost four years ago, I was assigned the responsibility of designing a comprehensive curriculum for this program that could be taken to other communities to assist them in replicating the success of the nationally recognized La Crosse experience.1 Concurrently, the quality improvement team at Gundersen Lutheran (a tertiary teaching hospital providing health care to patients throughout western Wisconsin, southeastern Minnesota and northeastern Iowa) identified a variety of gaps in the current program, and wanted to improve outcomes in such areas as early initiation of ACP in the outpatient setting, meeting the needs of different patient populations, and strengthening the facilitation skills of our professionals. What emerged has been an evolution and expansion of the principles and practices embedded in our existing program.
This article will describe the rationale for developing a patient-centered ACP interview for persons suffering from chronic life-threatening illness and their surrogate decision makers, offer a careful exploration of one case example from a pilot study we conducted with 27 patient-surrogate pairs, and elucidate the lessons we have learned thus far from our efforts to implement this fortified version of advance care planning. This in-depth effort to implement meaningful conversations with people who are at risk of serious complications demonstrates an evolution of the field of advance care planning. It "raises the bar" and visualizes what can be achieved if advance care planning is transformed from a document-driven, decision-focused event to one that emphasizes a relational, patient-centered process. The outcomes of such a transformation will not be measured by increasing the number of completed advance directives, but by improving satisfaction with the end-of-life experience.
Advance Care Planning and Special Patient Populations: One Size Does Not Fit All
Our work with what we have termed "special patient populations" arose for several reasons. First, the Ethics Committee at our organization had addressed a series of consults from staff regarding patients who had not recovered well after open heart surgery, and the struggles of the health care team and family over decisions regarding the continuation of life-sustaining treatment. Our ACP team realized how little work has been done regarding the planning needs of patients who are facing life-threatening surgery, are at risk for postoperative complications, and have family members who may be in the position of surrogate decision maker.
Second, the SUPPORT study, among others, clearly identified the lack of anticipatory planning for millions of Americans who suffer from end-stage chronic illness.2 Since the medical course in the final months of life for these patients is impossible to predict, many are at risk for sudden, but not unsurprising, complications and die unprepared, or receive care inconsistent with their preferences.3 Our organization has several specialty clinics (e.g., Heart Failure and Renal Dialysis), and we were interested in discovering how well we were meeting the ACP needs of patients with specific medical conditions, in particular those with end-stage progression of their chronic illness.
Third, although the facilitation skills taught in the basic Respecting Choices ACP course for facilitators were intended to be used for complex as well as healthy patients, we discovered that this was not happening to the extent we had hoped. For individuals who are healthy, or those with well managed chronic illnesses, the process of ACP, while not always easy, often involves a fairly standardized dialogue that includes such topics as the purpose of ACP, planning for the unexpected, how to discuss choices with loved ones, the selection of a surrogate decision maker, and the technical components of completing, distributing, and maintaining written plans. However, for a host of other individuals, planning for future health care decisions is more dynamic and complex. Our team was interested in better defining the additional facilitation skills required by health care professionals to assist patients with more complex needs.
Fourth, for special populations, we wanted to include the surrogate in the ACP process more consistently, insofar as many of them are caregivers or maintain close connections with their loved one, whose health and quality of life slowly decline. We were intrigued by several studies that were unable to improve a surrogate's understanding of a loved one's preferences for life sustaining treatment.4,5 We believed there were strategies that could strengthen the surrogate's role.
Therefore, we have come to define "special patient populations" as those involving individuals (and their chosen surrogate) who, for a variety of reasons, need extra assistance and more skilled facilitation in making future health care decisions. They include:
We believe that all of these patients require a different approach to advance care planning, one that involves an experienced facilitator who has an understanding of a specific disease and its progression, can present benefits and burdens of life-sustaining treatment, is able to assist an individual in understanding the options for future medical care, and who has honed the communication skills of listening, exploring, delivering bad news, and dealing with emotional responses.
In our quest to focus on ACP interventions with special patient populations, we looked for a partnership with research colleagues who could assist and challenge us to rigorously investigate our new ideas. We found that partnership with Karin Kirchhoff, PhD and her associates at the University of Wisconsin School of Nursing in Madison. This partnership was instrumental in identifying a theoretical framework for our intervention and designing a pilot study to test its efficacy.
Developing a Theoretical Framework: The Representational Approach to Advance Care Planning
In collaboration with Kirchhoff and our University of Wisconsin School of Nursing colleagues, we discovered a novel interview approach to patient education, the Representational Approach to Patient Education,6 which had been tested in patients requiring pain management, and which seemed adaptable to the ACP facilitation skills we believed necessary for special patient populations.
To understand the Representational Approach, it is helpful to consider some elements of the theories from which it is derived, in particular, the Common Sense Model of Illness Representation.7 According to Leventhal, an illness representation is the set of thoughts (whether medically accurate or not) that a person has about a health problem. It has five dimensions: identity, cause, time-line, consequences, and cure/control.8,9,10 Identity refers to how one describes the symptoms of a health problem. Cause refers to an individual's beliefs about the origin of the health problem. Time-line relates to beliefs about the length of an illness. Consequences are ideas about the short- and long-term outcomes of the problem. Cure/control refers to beliefs about the extent to which one can control or cure a health problem. These representations provide the patient with a cognitive framework for interpreting and processing new information.
Central to the Representational Approach to patient education is the idea that encouraging individuals to describe their illness beliefs along the five dimensions described above can set the stage for a highly effective, patient-centered intervention.11 First, through a detailed assessment, patients have an opportunity to examine their illness beliefs carefully and to comment on them. During this discussion, the status of existing beliefs that are barriers to effective coping can be mitigated by explicitly discussing the limitations, or consequences, of adhering to and acting upon those beliefs. Second, once an individual's illness representation has been assessed, educational information can be presented in a highly contextual manner, such that the new information may influence, replace, or modify existing beliefs. Third, if the patient sees value in replacing existing misconceptions, then an opportunity is created to assist the individual in learning new information.
The Representational Approach to Patient Education seemed to fit perfectly with the underlying concepts and interventions in our model. Therefore, we adapted this approach for implementation with special patient populations and named the resulting interview format the "Patient-Centered Advance Care Planning (PC-ACP) Interview." I will describe the five stages of this interview using a case example to demonstrate the skills and personal insights I gained in delivering this intervention during a pilot study of 27 patient/surrogate pairs in 2002 at Gundersen Lutheran Medical Center. A paper on the results of this study has been submitted for publication elsewhere.
Patient-Centered Advance Care Planning (PC-ACP) Interview
Stage 1: Representational assessment
The interviewer introduces the discussion as an opportunity for the patient and surrogate to understand and think about the life-sustaining choices that the patient would want in the future if unable to make decisions at that time. It includes an assessment of the patient's understanding of his/her current medical condition, prognosis, and potential complications, and explores the meaning of the illness to the patient, what makes his/her life worth living, and his/her expectations of the current plan of care. This information is useful as the interview progresses to assist the patient in reflecting on whether the burdens of a particular life-sustaining treatment match the goals for living well. The objective is to encourage the patient to verbalize his/her perspective (i.e., representation) as well as to assist the interviewer and surrogate to better understand these representations. In other words, the goal is to "see through the eyes of the patient" and allow that insight to guide and focus the discussion.
Dorothy, a 76-year-old end-stage renal patient, and her husband, Tom were interviewed while on dialysis during two separate one-hour interviews. As I was explaining that one of the purposes of the interview was for the two of them to better understand what the future holds and what medical decisions may be needed, Tom interrupted me. "We've talked," he said. "I know what Dorothy wants." Dorothy was quick to interrupt Tom. "I think I need to talk more, honey. We haven't talked enough," she said. She proceeded to describe how her life in the last several months had taken a turn for the worse. She had been on dialysis for five years, but in the last several months, her health condition had declined. She could no longer see, so needed Tom to feed her. She could no longer walk, so Tom had to help her with the simplest of tasks. "The only reason I see for living is that I know how much Tom loves me." When asked what she thought her potential complications might be, she was unable to verbalize specifics. "I guess I could get sicker, but I'm not sure how I could be any worse." Dorothy's representation was clear to her, but it was obvious this was new information for Tom.
Stage 2: Exploring misconceptions
The next stage of the interview explores misconceptions the patient may have regarding planning for future medical decision making. Previous hospitalizations and experiences with family or friends who have been seriously ill or died are explored to assess what the patient learned, and how these experiences might help or hinder the patient's ability to plan for the future. The quality of previous advance care planning discussions with family members is also explored, as often patients feel they have had enough discussion, but surrogates continue to lack understanding.
Dorothy relayed experiences of other family members who had been "hooked up to machines," and she said: "I wouldn't want that." She stated that within the last year, she had completed a Power of Attorney for Health Care (POAHC) document naming Tom as her surrogate, but no specific preferences were identified in the document found in her medical chart. The staff in the renal dialysis unit that cared for Dorothy had a policy of reviewing and updating advance directives on at least an annual basis. It became clear, however, that once Dorothy had verbalized her declining quality of life and her past experiences with other family members, she wanted to know and discuss more. For example, she did not understand she had a choice to continue with dialysis, or to choose not to be resuscitated if her heart stopped while on dialysis. Tom had no idea that these might be decisions he would be asked to make if Dorothy became incapacitated.
Stage 3: Creating conditions for change
This stage of the intervention reviews the rationale for discussing future medical decisions the patient would want the chosen surrogate to understand and act upon. The goal is to prepare the surrogate to be able to fully represent the patient's wishes and to acknowledge the life-threatening nature of the person's illness or condition.
The interview with Dorothy and Tom was one of my first, and I found myself feeling anxious about delivering the bad news of how sick Dorothy really was, and what potential complications she was likely to have. But I found that the initial two stages of the interview had allowed Dorothy to verbalize her fears and concerns, for example, her wish not to be hooked up to machines, and from this, it was clear that Dorothy understood her situation. Dorothy herself expressed how sick she was, so this was really no surprise to her. She was unaware however, of the real potential complications she was likely to face, e.g., cardiopulmonary resuscitation (CPR) or the need for hospitalization if she suffered a stroke or needed an amputation. I asked Dorothy for permission to give her and Tom more information regarding the potential complications she was likely to face and the related treatment decisions that would need to be made. She acknowledged: "I do want to know more." I reinforced to Tom that by discussing these situations while Dorothy was capable of expressing her beliefs, he would be more confident in any decisions he might be asked to make on her behalf.
Stage 4: Introducing replacement information
This stage of the interview uses disease-specific scenarios to introduce replacement information. The scenarios describe real clinical situations the patient may experience, and the related treatment choices that would need to be made by the surrogate. Benefits and burdens of specific life-sustaining treatment choices are explained as well as the importance of choosing a surrogate who can respect the patient's decisions. We created a disease-specific tool, the Statement of Treatment Preference survey, for three primary purposes. First, two scenarios are presented that realistically represent the patient's likely complications, not hypothetical ones. The decisions related to each of these scenarios are tied to the patient's perception of what living well means, e.g., does the patient want to continue to keep on fighting regardless of uncertainty or suffering, or have all life-sustaining treatment stopped? The patient's responses represent values and beliefs rather than a list of treatment decisions and can provide the basis for a surrogate's decision if needed in the future. Second, we wanted to provide an opportunity for patients to understand the risks of CPR given the severity of their current situation, and not just whether or not they wanted it. A third scenario gave them the opportunity to make a more informed CPR decision. Third, the survey includes a question regarding the degree of authority the patient wants the surrogate to have. The goal was to verbally communicate this to the surrogate in order to increase the surrogate's confidence in decisions that might have to be made at a future time.
Dorothy now could envision a specific complication whereby real decisions would need to be made for her. She was allowed to express her values regarding situations of uncertainty (scenario #1) and suffering (scenario #2). As Dorothy reflected on these two scenarios, she was able to articulate that any life worse than what she was already living would be unacceptable. "Why would I choose to possibly be worse off than I am right now?" Tom heard her values, not just her decisions. He learned of the pain and agony of her recent decline. Both cried during this stage of the interview. I had a sense that it opened a new door of communication for them, and that the words Dorothy spoke had never been heard before. I almost felt as though I was imposing on their intimacy, yet felt privileged to be there. While Dorothy had been asked her preference for CPR on more than one occasion, it now became a different decision. Since there was a high likelihood that she would not live through the CPR attempt and a high possibility that if she did, there would likely be complications, her decision was emphatic. It was no longer a decision not to have something done for her, but a decision to choose how she wanted to control the end of her life. Dorothy, Tom, and I then discussed what would happen if her heart stopped while she was on dialysis or if she were at home. How would he react? What procedures did we need to put in place to honor Dorothy's wish? How could Dorothy remain comfortable if a complication arose? While I learned of Dorothy's preferences, I learned much more. I learned that the value of the tool was not in delivering information or in getting decisions to be documented. In fact, I worry that if this tool is used inappropriately, it could cause more harm than good. The tool was a powerful vehicle to have a meaningful and timely discussion between intimates and for building a shared decision-making relationship among the key people involved in Dorothy's care.
Stage 5: Summary
The last stage of the interview summarizes the value of the previous discussion for patient and surrogate, as well as the need for future discussions as situations and preferences change. It is also used to develop any follow-up plans, such as further discussions with the patient's physician and other family members, and changes to the advance directive document.
Plans to have Dorothy's POAHC document amended were made and a No CPR order was written in her medical chart. I later discussed these issues with her care manager and physician, with suggestions to implement an out-of-facility DNR order as well. A summary of the discussion was written in Dorothy's medical chart. I thanked Dorothy and Tom for their frank discussion and the courage they demonstrated in facing some difficult decisions together. I asked them to give me feedback on what they felt about the interview. "I've needed to talk about this, but didn't know how to begin talking with my husband," Dorothy said. Tom replied, "I don't want to lose her, but will follow her wishes."
After Tom left the room, Dorothy summoned me to her bedside and asked if I would do her one more favor. "Would you please tell Tom that I am really ready to stop dialysis altogether? I just don't know how to tell him since I'm afraid to leave him alone." Once given the opportunity to reflect on her current medical situation and quality of life, Dorothy saw another opportunity to discuss a wish that was unspeakable to her. I represented a chance to convey a message to the person she loved most, but whose reaction she feared.
Lessons Learned from a Pilot Study of the PC-ACP Interview
In 2002, at the Gundersen Lutheran Medical Center, we conducted a pilot study of the PC-ACP interview with patients with end-stage CHF, end-stage renal disease (ESRD), and preoperative open-heart surgery (OHS). Of 27 patient/surrogate pairs, 13 were assigned to receive the intervention (4 OHS, 4 CHF, 5 ESRD) and 14 were assigned to the control group (4 OHS, 5 CHF, 5 ESRD). Comparison of the composite scores from the Statement of Treatment Preferences indicated significantly better congruence in decision-making for future medical treatment in pairs of patients and surrogates who had received the intervention than in the control group. In addition, the intervention group demonstrated greater satisfaction with the decision-making process and less decisional conflict. The results of this pilot study are promising, yet need replication and refinement to be generalized to a wider population. The learning, however, was intense and profound.
The experience of facilitating the PC-ACP interview touched the very essence of what improving end-of-life care should be all about: building relationships and opening new doors of understanding for the patient, surrogate, and health care provider. We will be unable to open these doors unless we open ourselves to learning new skills, creating opportunities, and developing a respect for the power of such meaningful conversations. It was a privilege to know that I had helped people address some of the most difficult times in their lives. I could not have realized what I would gain personally from these courageous people who exposed their fears and concerns and became vulnerable. They may never know the important lessons I learned.
Lesson 1: This is hard work
My background as a critical care nurse, health educator, and ethics consultant gave me confidence that I could do this work. My communication skills were good, my rapport with patients easy to achieve, and I was comfortable discussing death and dying (or so I thought). But, I discovered that this is hard work. I learned just how hard it was when I conducted three interviews in one day. At the end, I was exhausted by the reality of what people who are approaching life-threatening situations think, feel and fear. I had to deliver bad news. I had to be honest. I had to watch them cry. I had to hope that I was helpful to them, that I would not increase their level of stress. I needed to be aware of my own emotions so as not to let them distract from giving patients and their surrogates my full attention, nor to shy away from difficult questions and responses. It seems no surprise to me that health professionals find so many reasons not to do this work. It is simply hard.
Lesson 2: Intimacy among strangers is not difficult to achieve
For each of these patients, I entered their lives as a researcher. Yes, I was a nurse, but I was introduced as "the lady doing the study." I met them and then quickly moved into asking intimate and thought-provoking questions. How sick did they think they were? What was the last hospitalization like for them? What gave their life meaning? What did they hope for as their illness progressed? What kinds of life/death decisions would they want someone else to make for them if they could no longer speak for themselves? Intimidating questions for anyone, but why was I to expect they would be willing to talk to me, a stranger? I realized that as patients and their surrogates trusted my sincere interest in them, they were not only willing to share intimate thoughts and fears, they were eager to do so. Most were not afraid to relate to me as a stranger; rather, they seemed grateful for the opportunity. David Barnard relates the creation of this type of open environment to a pastoral care intervention called "providing hospitality," based on Henri Nouwen's term,12 and then goes on to quote Leonard Lunn quoting Henri Nouwen on what hospitality entails, as follows: "Hospitality…means primarily the creation of a free space where the stranger can enter and become a friend instead of an enemy. Hospitality is not to change people, but to offer them space where change can take place."13 As patients talked and surrogates listened, it was clear to me that change took place. I had simply created the "space."
Lesson 3: Patients are often afraid to talk to their loved ones
"I've been thinking about this for a while," said one of the patients in the study. "You have?" said her daughter in complete surprise. Patients would often first look at me, the interviewer, as they discussed what they would want or how difficult life had become. Tears flowed from the surrogates as they listened to expressions I sensed they had never heard before. I watched as one daughter listened to her mother say that she wanted to stop dialysis if she were to have a stroke and not know who she was or where she was. As the daughter cried and said, "I don't think that I could ever stop the dialysis," her mother said to her: "But you want to do what I want, don't you?" Together we explored what stopping dialysis would mean, and I reassured both that comfort would be provided, that it would not be a painful experience.
Another man with advanced heart disease was interviewed along with his wife, a nurse, who was very involved in assisting her husband in managing his illness. Their love for each other was obvious. Within the first 10 minutes of the interview, as her husband was describing what his illness meant to him, what his life might be like in the future, the wife broke down and said that she no longer wanted to participate in the interview. Through her tears, she explained that she did not want anything to disturb her husband; that he had been doing so well lately and she did not want him upset. Calmly, he said to her, "This is something that I want to talk about, I think I need to talk about. But, if you're not ready, we'll come back when you are." Although the interview ended at that point, and we discussed follow-up plans, I believe that a new door of communication had opened between the two of them. Perhaps he was stronger than she had thought. Perhaps she had been carrying too much inside her. Most importantly, I realized that providing opportunities for patients and their loved ones to discuss the reality of their illness does not mean they will want or be able to do it at that moment. This couple knew the door was open for future conversations when they were both ready. It also became very clear to me the importance of including the surrogate in these discussions, the importance of viewing both individuals as my patient. The bond that exists between patients with complex needs and their surrogate is critical, and my intervention needed to enhance that relationship and do nothing to disrupt it.
Lesson 4: Listening is the intervention
Listen. Explore. Listen. Explore. And then listen some more. As an experienced health professional, I have a lot of information to give and a lot of knowledge to impart. The interview technique reinforced (or forced me to realize) that I have much more to learn before I begin to teach. This is not wasted time or energy. By listening, both the surrogate and I discovered what was most important to the patient, what s/he wanted to talk about. Often, however, patients needed a little coaxing. I found that the first time I asked an exploratory question, a patient would give me a familiar, quick answer. "What has your illness been like for you?" I asked. "It's been hard, but I've adjusted," said the patient. It was only when I used reflection, affirmation, and paraphrasing that patients trusted I wanted to hear more. Phrases such as "Tell me more," or "That must be hard to live with," or "You say it has been hard for you?" were extremely effective in promoting more discussion. The answers I received not only helped the patient verbalize his/her own thoughts and feelings, but also gave me the connection by which to provide information specific to the situation. As patients themselves listened to their own stories, I had a clear sense they understood their choices in new ways. It was not only the information that helped them understand, but the power of expressing their own values and goals. I call this the "a-ha" moment, when at last the answers seem clearer to the patient than ever before because they have been self-discovered, not dictated or verbalized by someone else.
Next Steps: Where Do We Go from Here?
There are several challenges in integrating this work as a component of quality advance care planning for "special patient populations." The health care systems we work in are fast-paced, overworked, and under-reimbursed. Health professionals who work in these systems often have not learned facilitation skills, do not see these skills role-modeled by colleagues or supported by administrators, or simply do not see the value in this level of advance care planning. In many places, advance care planning is still defined from the narrow perspective of completing a written document, or determining an individuals' preference for CPR.
This clinical reality is in opposition to the growing evidence and importance of shifting the focus of advance care planning from an information-giving model to a relational, patient-centered .14-17 Research with hemodialysis and AIDS patients has revealed the importance from the patient's perspective of using ACP as a means of strengthening relationships among close loved ones and achieving a sense of control.18,19 Consistent with this focus on relationships, Joseph Fins, MD emphasizes the opportunity for advance care planning to build covenants between two trusting individuals, in contrast to utilizing the advance directive solely as a legal contract: "Although it [the ACP process] begins as a contractual relationship, the contract can evolve into a covenant when the patient and proxy understand the designation as an enduring and unifying set of obligations."20 Whereas evidence and support is mounting to shift the focus of advance care planning, there is no clear roadmap for how to make it happen.
The patient-centered interview described in this article provides one roadmap worthy of further exploration. The Respecting Choices team believes the facilitation skills necessary to deliver this interview can and must be taught to qualified professionals. We are evaluating the impact of a one-day curriculum developed to assist professionals currently working with special patient populations to expand their facilitation skills and discover ways to integrate this service into their existing practice. The strategies to teach these facilitation skills include demonstration, practice sessions, and small group discussion. Professionals who work with special populations typically develop a consistent and ongoing relationship with patients, which provides opportunities to weave new facilitation skills into care management over time and throughout the continuum of health care services. With these opportunities and practice, professionals will gradually increase competence in facilitating such conversations with their patients as well as discover avenues for implementation. There is much more to be learned as the impact of a patient-centered approach to ACP is tested.
As we struggle to overcome the challenges of implementing a patient-centered approach to ACP with special patient populations, the power of the intervention must be a constant reminder of the importance of finding solutions. This intervention has created an opportunity for individuals with life-threatening conditions, and their surrogates, to re-examine their current state of health, re-explore their goals and values for living well, and have their responses acknowledged. Patients were not abandoned as they confronted the realities of declining health and functional status and the related treatment options they needed to understand, not just decide upon. The beginnings of a covenantal relationship were realized. These relationships were stimulated by a facilitation approach that wove together the thoughts, fears, and concerns of a patient, the doubts, misunderstanding, and discomfort of a surrogate, and the guidance, truth telling and support of a health care provider. What emerged was the strengthening of shared decision making between patient, surrogate, and health care provider and the buttressing of strong and intimate relationships, which can only serve to enhance the end-of-life experience.
I would like to recognize the many individuals who made this work possible for me to experience: Bud Hammes, director of Respecting Choices, who never questions my passion for trying something new; Elaine Colvin, advance care planning coordinator, who fuels my ideas and consistently improves them; Karin Kirchhoff, nursing professor, who willingly opens the door to her expertise in research and end of life care; Mi-Kyung Song, doctoral nursing student, who often works behind the scenes to support the research design and communicate findings to others; Anna Romer, who intuitively related to what I had experienced and encouraged me to write about it. Last, thank you to those courageous patients and loved ones who taught me so much about living each day to the fullest.
1. Hammes BJ, Rooney BL. Death and end-of-life planning in one midwestern community. Archives of Internal Medicine. 1998;158(4):383-390.[Return to Featured Innovation]
2. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). Journal of the American Medical Association. 1995;274(20):1591-1598.[Return to Featured Innovation]
3. Teno JM, Fischer ES, Hamel MB, Coppola KM, Dawson NV. Medical care inconsistent with patients' treatment goals: Association with 1-year Medicare resource use and survival. Journal of American Geriatrics Society 2002;50(3):496-500.[Return to Featured Innovation]
4. Hines SC, Glover JJ, Babrow AS, Holley JL, Badzek LA, Moss AH. Improving advance care planning by accommodating family preferences. Journal of Palliative Medicine. 2001; In press.[Return to Featured Innovation]
5. Ditto PH, Danks JH, Smucker WD, Bookwala J, Coppola KM, Dresser R, et al. Advance directives as acts of communication: A randomized controlled trial. Archives of Internal Medicine. 2001;161(3):421-430.[Return to Featured Innovation]
6. Donovan HS, Ward S. A representational approach to patient education. Journal of Nursing Scholarship.2001;33(3):211-216.[Return to Featured Innovation]
7. Leventhal H, Nerenz D, Steele DS. Illness representations and coping with health threats. In Handbook of Psychology and Health, Baum A, Singer JE (eds.). New York: Erlbaum, 1984, 221-252.[Return to Featured Innovation]
8. Leventhal H, Nerenz D, Steele DS, 1984.[Return to Featured Innovation]
9. Lau RR, Bernard TM, Hartman KA. Further explorations of common-sense representations of common illnesses. Health Psychology 1989;8(2):195-219.[Return to Featured Innovation]
10. Keller ML. Why don't young adults protect themselves against sexual transmission of HIV? Possible answers to a complex question. AIDS Education and Prevention. 993;5(3):220-233.[Return to Featured Innovation]
11. Donovan HS, Ward S, 2001. [Return to Featured Innovation]
12. Barnard D. Advance care planning is not about "getting it right." Journal of Palliative Medicine. 2002;5(4):475-481.[Return to Featured Innovation]
13. Lunn L. Spiritual Concerns in Palliation. In The Management of Terminal Malignant Disease, 3rd ed., Saunders C, Sykes N (eds.). London: Edward Arnold, 1993, 213-225.[Return to Featured Innovation]
14. Teno JM, Lynn J. Putting advance-care planning into action. Journal of Clinical Ethics. 1996;7(3):205-213.[Return to Featured Innovation]
15. Prendergast TJ. Advance care planning: Pitfalls, progress, promise. Critical Care Medicine. 2001;29(2 Suppl):N34-39.[Return to Featured Innovation]
16. Zuckerman C, Wollner D. End of life care and decision making: How far we have come, how far we have to go. Hospice Journal. 1999;14(3-4):85-107.[Return to Featured Innovation]
17. Hammes BJ. What does it take to help adults successfully plan for future medical decisions? Journal of Palliative Medicine. 2002;4:453-456.[Return to Featured Innovation]
18. Martin DK, Thiel EC, Singer PA. A new model of advance care planning: Observations from people with HIV. Archives of Internal Medicine. 1999;159(1):86-92.[Return to Featured Innovation]
19. Teno JM, Nelson HL, Lynn J. Advance care planning. Priorities for ethical and empirical research. Hastings Center Report. 1994;24(6):S32-36.[Return to Featured Innovation]
20. Fins JJ. Commentary: From contract to covenant in advance care planning. Journal of Law, Medicine & Ethics. 1999;27(1):[Return to Featured Innovation]
|Last Updated: March 19th, 2003|
|© 1994-2003, Education Development Center. All rights reserved.
By accessing this site you agree to the Terms and Conditions Governing the Innovations Web Site.
Site Design by Interactive Web Design
We subscribe to the
HONcode principles of the
Health On the Net Foundation