[Skip to Content]
Sign In
Individual Sign In
Create an Account
Institutional Sign In
OpenAthens Shibboleth
[Skip to Content Landing]
Figure 1.
Process and Activities for Engaging Patients, Family Members, and Community Members in Creating a Question Prompt List (QPL)
Process and Activities for Engaging Patients, Family Members, and Community Members in Creating a Question Prompt List (QPL)

PFAC indicates Patient and Family Advisory Council.

Figure 2.
Patient and Family Advisory Council Question Prompt List Brochure
Patient and Family Advisory Council Question Prompt List Brochure
Table 1.  
PFAC Meeting Timeline, Objectives, Activities, and Outcomes
PFAC Meeting Timeline, Objectives, Activities, and Outcomes
Table 2.  
Informational and Decision Support Failures Identified in Qualitative Data by the PFAC
Informational and Decision Support Failures Identified in Qualitative Data by the PFAC
1.
Goodney  PP, Stukel  TA, Lucas  FL, Finlayson  EV, Birkmeyer  JD.  Hospital volume, length of stay, and readmission rates in high-risk surgery.  Ann Surg. 2003;238(2):161-167.PubMedGoogle Scholar
2.
Finks  JF, Osborne  NH, Birkmeyer  JD.  Trends in hospital volume and operative mortality for high-risk surgery.  N Engl J Med. 2011;364(22):2128-2137.PubMedGoogle ScholarCrossref
3.
Schwarze  ML, Barnato  AE, Rathouz  PJ,  et al.  Development of a list of high-risk operations for patients 65 years and older.  JAMA Surg. 2015;150(4):325-331.PubMedGoogle ScholarCrossref
4.
Scarborough  JE, Pappas  TN, Bennett  KM, Lagoo-Deenadayalan  S.  Failure-to-pursue rescue: explaining excess mortality in elderly emergency general surgical patients with preexisting “do-not-resuscitate” orders.  Ann Surg. 2012;256(3):453-461.PubMedGoogle ScholarCrossref
5.
Paul Olson  TJ, Pinkerton  C, Brasel  KJ, Schwarze  ML.  Palliative surgery for malignant bowel obstruction from carcinomatosis: a systematic review.  JAMA Surg. 2014;149(4):383-392.PubMedGoogle ScholarCrossref
6.
Braddock  C  III, Hudak  PL, Feldman  JJ, Bereknyei  S, Frankel  RM, Levinson  W.  “Surgery is certainly one good option”: quality and time-efficiency of informed decision-making in surgery.  J Bone Joint Surg Am. 2008;90(9):1830-1838.PubMedGoogle ScholarCrossref
7.
Fagerlin  A, Sepucha  KR, Couper  MP, Levin  CA, Singer  E, Zikmund-Fisher  BJ.  Patients’ knowledge about 9 common health conditions: the DECISIONS survey.  Med Decis Making. 2010;30(5)(suppl):35S-52S.PubMedGoogle ScholarCrossref
8.
Schwarze  ML, Bradley  CT, Brasel  KJ.  Surgical “buy-in”: the contractual relationship between surgeons and patients that influences decisions regarding life-supporting therapy.  Crit Care Med. 2010;38(3):843-848.PubMedGoogle ScholarCrossref
9.
Schwarze  ML, Redmann  AJ, Alexander  GC, Brasel  KJ.  Surgeons expect patients to buy-in to postoperative life support preoperatively: results of a national survey.  Crit Care Med. 2013;41(1):1-8.PubMedGoogle ScholarCrossref
10.
Kruser  JM, Pecanac  KE, Brasel  KJ,  et al.  “And I think that we can fix it”: mental models used in high-risk surgical decision making.  Ann Surg. 2015;261(4):678-684.PubMedGoogle ScholarCrossref
11.
Nabozny  MJ, Kruser  JM, Steffens  NM,  et al.  Patient-reported limitations to surgical buy-in: a qualitative study of patients facing high-risk surgery [published online January 18, 2016].  Ann Surg. PubMedGoogle Scholar
12.
Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life. http://www.nationalacademies.org/hmd/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx. Released September 17, 2014. Accessed June 1, 2015.
13.
Couet  N, Desroches  S, Robitaille  H,  et al.  Assessments of the extent to which health-care providers involve patients in decision making: a systematic review of studies using the OPTION instrument.  Health Expect. 2015;18(4):542-561.PubMedGoogle ScholarCrossref
14.
Joseph-Williams  N, Elwyn  G, Edwards  A.  Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making.  Patient Educ Couns. 2014;94(3):291-309.PubMedGoogle ScholarCrossref
15.
Butow  PN, Dunn  SM, Tattersall  MH, Jones  QJ.  Patient participation in the cancer consultation: evaluation of a question prompt sheet.  Ann Oncol. 1994;5(3):199-204.PubMedGoogle Scholar
16.
Hibbard  JH, Stockard  J, Mahoney  ER, Tusler  M.  Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers.  Health Serv Res. 2004;39(4, pt 1):1005-1026.PubMedGoogle ScholarCrossref
17.
Maly  RC, Frank  JC, Marshall  GN, DiMatteo  MR, Reuben  DB.  Perceived efficacy in patient-physician interactions (PEPPI): validation of an instrument in older persons.  J Am Geriatr Soc. 1998;46(7):889-894.PubMedGoogle ScholarCrossref
18.
Walczak  A, Butow  PN, Clayton  JM,  et al.  Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers.  BMJ Open. 2014;4(6):e005745.PubMedGoogle ScholarCrossref
19.
Brandes  K, Linn  AJ, Butow  PN, van Weert  JC.  The characteristics and effectiveness of question prompt list interventions in oncology: a systematic review of the literature.  Psychooncology. 2015;24(3):245-252.PubMedGoogle ScholarCrossref
20.
Brown  R, Butow  PN, Boyer  MJ, Tattersall  MH.  Promoting patient participation in the cancer consultation: evaluation of a prompt sheet and coaching in question-asking.  Br J Cancer. 1999;80(1-2):242-248.PubMedGoogle ScholarCrossref
21.
Smets  EM, van Heijl  M, van Wijngaarden  AK, Henselmans  I, van Berge Henegouwen  MI.  Addressing patients’ information needs: a first evaluation of a question prompt sheet in the pretreatment consultation for patients with esophageal cancer.  Dis Esophagus. 2012;25(6):512-519.PubMedGoogle ScholarCrossref
22.
Clayton  JM, Butow  PN, Tattersall  MH,  et al.  Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care.  J Clin Oncol. 2007;25(6):715-723.PubMedGoogle ScholarCrossref
23.
Pecanac  KE, Kehler  JM, Brasel  KJ,  et al.  It’s big surgery: preoperative expressions of risk, responsibility, and commitment to treatment after high-risk operations.  Ann Surg. 2014;259(3):458-463.PubMedGoogle ScholarCrossref
24.
Patton  MQ.  Qualitative Evaluation and Research Methods. 4th ed. Thousand Oaks, CA: SAGE Publications Inc; 2001.
25.
Agency for Healthcare Research and Quality. Questions to ask your doctor. http://www.ahrq.gov/patients-consumers/patient-involvement/ask-your-doctor/index.html. Updated September 2012. Accessed November 26, 2014.
26.
American Association of Retired Persons. Questions to ask the doctor. http://www.aarp.org/relationships/caregiving-resource-center/info-08-2010/pc_questions_to_ask_the_doctor.html. Accessed November 26, 2014.
27.
Agency for Healthcare Research and Quality. Having surgery? what you need to know: questions to ask your doctor and your surgeon. http://archive.ahrq.gov/patients-consumers/diagnosis-treatment/surgery/questions/index.html. Updated October 2005. Accessed November 26, 2014.
28.
Doctella. https://www.doctella.com/. Accessed November 26, 2014.
29.
Clayton  J, Butow  P, Tattersall  M,  et al.  Asking questions can help: development and preliminary evaluation of a question prompt list for palliative care patients.  Br J Cancer. 2003;89(11):2069-2077.PubMedGoogle ScholarCrossref
30.
Brandes  K, Butow  PN, Tattersall  MH,  et al.  Advanced cancer patients’ and caregivers’ use of a Question Prompt List.  Patient Educ Couns. 2014;97(1):30-37.PubMedGoogle ScholarCrossref
31.
Johns Hopkins Medicine. Questions to ask before surgery. http://www.hopkinsmedicine.org/healthlibrary/conditions/surgical_care/questions_to_ask_before_surgery_85,P01409/. Accessed November 26, 2014.
32.
Wisconsin Network for Research Support. Community advisors on research design and strategies. http://winrs.son.wisc.edu/index.php/services/cards/. Accessed February 16, 2015.
33.
Russ  AJ, Kaufman  SR.  Family perceptions of prognosis, silence, and the “suddenness” of death.  Cult Med Psychiatry. 2005;29(1):103-123.PubMedGoogle ScholarCrossref
34.
Singh  JA, Sloan  JA, Atherton  PJ,  et al.  Preferred roles in treatment decision making among patients with cancer: a pooled analysis of studies using the Control Preferences Scale.  Am J Manag Care. 2010;16(9):688-696.PubMedGoogle Scholar
35.
Degner  LF, Sloan  JA, Venkatesh  P.  The Control Preferences Scale.  Can J Nurs Res. 1997;29(3):21-43.PubMedGoogle Scholar
36.
Greene  J, Hibbard  JH, Sacks  R, Overton  V.  When seeing the same physician, highly activated patients have better care experiences than less activated patients.  Health Aff (Millwood). 2013;32(7):1299-1305.PubMedGoogle ScholarCrossref
37.
Danjoux Meth  N, Lawless  B, Hawryluck  L.  Conflicts in the ICU: perspectives of administrators and clinicians.  Intensive Care Med. 2009;35(12):2068-2077.PubMedGoogle ScholarCrossref
Original Investigation
October 2016

Engaging Patients, Health Care Professionals, and Community Members to Improve Preoperative Decision Making for Older Adults Facing High-Risk Surgery

Author Affiliations
  • 1Department of Surgery, University of Wisconsin, Madison
  • 2Denver Public Health, Denver Health and Hospital Authority, Denver, Colorado
  • 3Department of Family Medicine and Community Health, University of Wisconsin, Madison
  • 4Department of Pediatrics, University of Wisconsin, Madison
  • 5Department of Surgery, Oregon Health and Science University, Portland
  • 6Department of Medical History and Bioethics, University of Wisconsin, Madison
JAMA Surg. 2016;151(10):938-945. doi:10.1001/jamasurg.2016.1308
Key Points

Question  Can researchers engage with surgical patients and family members to develop an intervention to address preoperative decisional and informational needs?

Findings  The experiences of patients and family members were integrated through observational study and direct engagement to create a question prompt list for older adults considering high-risk surgery. Three decision-making needs were addressed, including clarification of treatment options, setting postoperative expectations, and advance care planning.

Meaning  This intervention was designed to overcome gaps in current practice by activating patients to promote deliberation and to prepare them for expected and unexpected outcomes.

Abstract

Importance  Older patients are at greater risk for postoperative complications, yet they are less likely than younger patients to ask questions about surgery.

Objective  To design an intervention to improve preoperative decision making and manage postoperative expectations.

Design, Setting, and Participants  A Patient and Family Advisory Council (PFAC) was created to help identify preoperative decisional needs. The PFAC included 4 men and women who had previous experience with high-risk surgery as older patients or their family members; the PFAC met monthly at a local library from May 2014 to April 2015 to examine findings from a prior qualitative study and to integrate themes with PFAC members’ experiences. Patient observations included 91 recorded conversations between patients and surgeons and 61 patient interviews before and after surgery. The PFAC members and other stakeholders evaluated 118 publicly available questions and selected 12 corresponding to identified needs to generate a question prompt list (QPL). Three focus groups, including 31 community members from diverse backgrounds, were conducted at community centers in Madison and Milwaukee, Wisconsin, to refine the QPL. A clinical pilot with 42 patients considering surgery was conducted in one outpatient surgical clinic in Madison.

Main Outcomes and Measures  Generation of a QPL to address patients’ preoperative informational and decisional needs.

Results  Through exploration of qualitative data, the PFAC noted 3 critical problems. Patients and family members believed surgery had to be done, were surprised that postoperative recovery was difficult, and lacked knowledge about the perioperative use of advance directives. The PFAC identified a need for more information and decisional support during preoperative conversations that included clarification of treatment options, setting postoperative expectations, and advance care planning. The following 3 question prompt categories arose: “Should I have surgery?” “What should I expect if everything goes well?” and “What happens if things go wrong?” The final list included 11 questions within these domains, was understandable in English and Spanish, and was acceptable to patients in the clinic.

Conclusions and Relevance  Through direct engagement of stakeholders, a QPL was created to address core decisional and informational needs of surgical patients. Future testing will evaluate whether this list can be used to improve patient engagement and reduce postoperative regret and conflict about postoperative treatments.

Introduction

Each year, approximately 500 000 Americans 65 years or older will have a high-risk operation, such as heart bypass or major cancer surgery.1-3 Although many patients benefit from high-risk surgery, it carries a real potential for mortality and serious complications, particularly for older patients with multiple comorbidities. High-risk surgery can have other unintended consequences, including postoperative suffering, conflict about additional aggressive treatments, and receipt of unwanted interventions.4,5 Thus, much is at stake for patients in the decision to proceed.

Surgeons play an important role helping patients make preference-sensitive decisions. However, surgeons often miss opportunities for these discussions.6-11 Patients report that “explanations are rushed, issues are not explained, [and] choices are not understood.”12(p6-6) Although patients generally prefer involvement in the decision-making process, they frequently do not know how to engage.13,14 Patients who are activated receive more patient-focused care and are more likely to take part in collaborative decision making.15,16 This activation is especially critical for older patients, who are less likely to ask questions and less effective in ensuring that physicians attend to their concerns than younger patients.17

In other settings, question prompt lists (QPLs) can effectively improve patient engagement.18-22 Standardized lists of questions to ask the physician are available, but patients who have experience with surgery rarely participate in their development. To improve patient engagement in surgical decision making, we need to bridge the gap between patients’ need to make the consequences of surgery relevant to their lives and the surgeon’s goal of setting realistic expectations. Our objective was to design an intervention to improve preoperative decision making. By formalizing a partnership among patients, family members, and researchers, our Patient and Family Advisory Council (PFAC) developed a QPL to help older adults with high-stakes surgical decisions.

Methods
Development of a PFAC

Our PFAC served as consultants to provide feedback and reflection on our research, specifically to clarify concepts from previously generated qualitative data and to integrate the PFAC’s life experiences with identified priorities. We enlisted PFAC members through clinic nurses, surgeons, and hospital patient relations departments. We invited patients and family members of older patients who had experience with high-risk surgery and purposely selected a small group with strong literacy skills who could critically interpret abstracted data. Two members previously had major surgery (cardiac and neurologic) and 2 members were primary caregivers for patients who had surgery (vascular and oncologic). This group of 2 men and 2 women met monthly at a public library and received $1000 for attendance at twelve 90-minute meetings (May 2014 to April 2015), independent review of materials, and travel.

Collection of qualitative data was approved by the institutional review boards of the University of Wisconsin and Partners Health Care System and the research ethics board of the University of Toronto. The institutional review board of the University of Wisconsin exempted the QPL clinical pilot from review. We did not pursue the boards’ approval for the work described by the PFAC or community groups because they did not have access to protected health information and are considered research advisors. All PFAC members were apprised of the extent of this project in advance and their compensation and participated voluntarily.

Origins of Qualitative Data

Before conception of our PFAC, we conducted an observational qualitative study during a 3-year period that included 91 audio-recorded preoperative conversations between patients and 11 surgeons described in-depth elsewhere.10,11,23 We also interviewed patients before (n = 34) and after (n = 27) surgery. We used an inductive coding strategy and deliberative adjudication process among researchers to support higher-level analysis whereby codes were expanded and refined to capture phenomena present in the data.

PFAC Process

Meeting agendas included an opening question, a statement of the meeting objectives, and a wrap-up forecasting the next steps (Table 1). Our first meetings established project goals, a timeline, and expectations. Members also shared their experience with surgery. Next, we presented themes from our qualitative analysis and linked each theme with a deidentified patient story. Members discussed their reactions and connected study data with their personal experience with high-risk surgery. This member-checking process24 enriched data integration with the lived experience of members of our PFAC (Figure 1).

QPL Development

Discussions from the first 3 PFAC meetings generated key informational and decisional deficits to guide development of the QPL. We then collected 271 questions “to ask a doctor” from publicly available websites25-28 and published literature.21,29-31 We excluded duplicate questions and concerns irrelevant to our targets (eg, “Is there anything specific I need to bring to the hospital?”). We asked PFAC members, 2 surgeons who routinely perform high-risk operations on older patients, a patient advocate, and a hospital administrator to score the remaining 118 questions on a 5-point Likert scale.

We brought the 20 highest-rated questions to the PFAC. Members deliberated about the meaning of each question, whether they could ask each question, and whether the surgeon’s answer would be valuable. Using these criteria, they generated a 12-question prototype QPL.

Community Focus Groups

We presented the prototype QPL to focus groups and iteratively revised it in response to feedback. We engaged a well-established panel of 6 participants specifically trained to provide feedback to researchers and hailing from difficult-to-reach populations recruited from service programs such as food pantries and parenting groups.32 A facilitator presented each question and asked:

  • “Does this question make sense?”

  • “Would you feel comfortable asking this question?” and

  • “If you ask this question, what information are you hoping to get?”

We brought the revised prototype to a second group of 6 participants and a Spanish version to 19 Spanish-speaking older adults who reflected on the appearance and comprehensibility of the QPL and whether they could ask a surgeon the questions. Because QPLs are effective only when physicians endorse their use,20 we used this same iterative process with our stakeholders—the PFAC, 2 surgeons, and community groups—to generate a letter from the surgeon to accompany the QPL.

QPL Pilot

To evaluate the acceptability of our QPL, we tested previsit mail delivery of the QPL and surgeon letter at a local vascular surgery clinic. We then informally interviewed patients who had received the QPL about its use and ascertained their level of comfort asking the questions. We also solicited feedback from surgeons.

Results

Members of the PFAC identified informational and decision support failures in the qualitative data, including misunderstandings about treatment options and postoperative expectations. They then integrated this information with their lived experience to generate a QPL to address these deficiencies. After examining the qualitative data, PFAC members believed that patients and family members were unprepared for surgery. They were concerned that patients believed surgery had to be done, were surprised that postoperative recovery was difficult, and lacked knowledge about the use of advance directives (Table 2).

Choices

The PFAC members examined qualitative data that exposed a lack of choice about whether to have surgery. Patients in the qualitative study reported their surgeon had not presented alternatives or that the alternatives presented were unacceptable. This notion was linked to the patients’ belief that the surgeon felt strongly that surgery should be done or a personal understanding that their illness required surgery. These data showed patients and families had developed an understanding that the disease itself compelled the need for surgery, thereby determining the absence of alternatives.

Furthermore, in the setting of an unwanted outcome, this inextricable link between surgery and disease provided reassurance about the choice to proceed with surgery. For example, the wife of a patient whose cognitive impairment progressed markedly with surgery sought comfort with their decision:

…because we asked the doctor…because he said about the confusion [dementia], it could have been worse with the surgery. I said, well, what’s my option? Does he really need the surgery…and he goes, no, he did need it.

Another patient who spent months in the hospital after resection of a benign pancreatic mass reported, “I wouldn’t have had surgery if I didn’t have to have the tumor removed.” Belief that there was no choice or surgery had to be done appeared comforting to patients with serious illness and generated concern from the research team that this conviction should not be disrupted by efforts to improve decision making.

The PFAC members were distressed that our qualitative study patients appeared uninformed about alternatives. Simultaneously they empathized with the notion that surgery had to be done. One member told us: “[patients] already have one foot into the surgery room” before meeting a surgeon because the referral process promotes a message that surgery is essential. Still, they were clear that informed decision making was crucial for all patients, even if they ultimately concluded surgery had to be done. They stressed that patients need to be “told all the ramifications and possibilities of both having [surgery] and not having it,” which requires a clear explanation about what could be gained and what would happen without surgery.

These discussions generated the first decision support target for our QPL: “Should I have surgery?” Our PFAC wanted patients to deliberate about having surgery and receive explicit information about how surgery might improve symptoms or longevity. To address this need, our stakeholders selected the question prompts:

  • “What are my options?”

  • “What is likely to happen if I do have surgery? If I don’t have surgery?”

  • “Will surgery make me feel better?” and

  • “Will surgery help me live longer? If so, how much longer?”

Expectations

The PFAC explored qualitative data suggesting patients were unprepared for what occurred postoperatively. For example, 1 patient noted she had been apprised of specific risks, but did not recognize this information could be used to prepare for complications or prolonged recuperation. She described how frightened she was by her slow recovery and postoperative weakness:

No, no I wasn’t expecting anything. They didn’t tell me there could be [complications]. They did say you could develop A-fib and they did say that after the operation you could have a stroke or heart attack.…So I didn’t really, I did ask questions, but I guess I didn’t ask if it would be a long recovery or what could happen…I mean you’re not expecting, and I don’t think you know all the questions you should ask.

Although surgeons named risks and described operations under consideration as big surgery, patients struggled to translate this information. Patients assumed they would return to normal postoperatively: “If I can’t come back normal, I don’t want to come back.”

The PFAC expressed concern that patients underestimated the impact of surgery and had a naive outlook about the seriousness of surgery, leading to surprise or distress when recovery was arduous. This notion was familiar to PFAC members who reported feeling “blindsided” postoperatively. They worried that what was normal after surgery for the surgeon was not normal for the patient and this might cause distress when the surgeon’s expected outcome was unexpected by the patient.

This discussion generated the target: “What should I expect if everything goes well?” The PFAC chose question prompts to prepare for recovery and long-term physical changes, including:

  • “How do you think my daily life will look after surgery? Right after surgery, 3 months later, 1 year later?”

  • “Will I have any tubes or drains put in during or after surgery? Will I need them at home?”

  • “How will this surgery affect my other health problems?” and

  • “After I leave the hospital, what type of care do you think I will need?”

Complications

The PFAC reviewed qualitative data that exposed a wide variation in treatment preferences for serious postoperative complications. Patients believed the surgeon knew their wishes despite the lack of explicit discussion. For example, 1 study patient stated, “The only thing I don’t want, if I do die, I don’t want to be revived.” This type of information was not discussed with surgeons. A few patients mentioned their advance directive, but the surgeon did not explore their preferences further. Thus how to proceed in the event of a postoperative complication was unclear. Some believed family members were familiar with their preferences and could make decisions if needed.

The PFAC members were concerned that patients needed more advance care planning. They expressed dismay that patients’ treatment preferences were not communicated: “There is a disconnect between what the patients want and who is the right person to tell these wishes.” The PFAC struggled to understand how specific directives might need to be tailored to the surgical setting and were shocked by the lack of standard procedures for notifying all health care professionals about existing directives. They identified a critical need for patients to clarify their preferences with the surgeon and to discuss how directives might be interpreted during the perioperative period.

The PFAC sought questions to promote conversation about “What happens if things go wrong?” They chose the following question prompts to encourage this type of discussion:

  • “Can you describe serious complications and explain what those might mean for me?”

  • “If I’m too sick to speak for myself, how can I make sure you know my wishes?” and

  • “If I decide to appoint someone to make medical decisions for me, what do I need to do to make those arrangements official?”

Acceptability of the QPL

English- and Spanish-speaking community members endorsed the questions on the QPL and believed that they could ask all the questions on the list. Surgeon stakeholders agreed they could answer the questions.

We iteratively revised words that community members believed were difficult to understand or to use in conversation. Community members worried that “Will surgery help me live longer?” was difficult to answer because it suggested surgeons can guarantee specific outcomes. They did not want patients to “hold doctor[s] accountable” for unreasonable information and suggested we add in your opinion to 3 questions. Community members praised the brochure’s clarity and understood they did not need to ask every question. They were not frightened by questions about advance care planning. Our final QPL intervention is a brochure with 11 questions (Figure 2) and a letter from the surgeon endorsing its use.

Pilot Testing

In the clinic, patients used the QPL to assist communication and felt confident that they were well informed. They noted “it puts questions in your mind,” including “questions you never would have thought to ask.” They believed they were able to explore how surgery might affect their quality of life and to secure formal designation of a health care proxy “just in case.” One patient reported nervousness on receiving the QPL because he did not know “surgery was on the table” and had inferred his problem was serious. Still, this patient understood surgical consultation was an opportunity to get his questions answered. During consultations surgeons noted that patients would pull the list out to ensure their questions were answered.

Discussion

Through engagement of patients, family members, and other stakeholders, we created a QPL to address core decisional and informational needs of patients considering high-risk surgery. The intervention, which includes the list of questions and a supportive letter from the surgeon (https://www.hipxchange.org/SurgicalQPL), targets elements of primary importance for informed decision making, including discussion of treatment options, clarification of goals, and preparation for expected and unexpected outcomes. Although these elements seem to be covered during traditional informed consent, this intervention is designed to rectify gaps in communication identified by patients and family members that current practices fail to address. These results have important implications for surgeons, patients, and their family members.

For surgeons, this intervention will require translating professionally defined notions of risk and benefit into patient-centered outcomes, specifically goals and expectations. Pecanac et al23 have previously documented that surgeons skillfully describe the gravity of high-risk surgery and routinely disclose risk, yet we find it remarkable that this process inadequately supports patients as they decide whether to have surgery or prepare for expected outcomes. Although surgeons work hard to provide critical information, the meaning of big surgery and risk of heart attack is unfamiliar to patients and families who struggle to imagine how such events may be experienced. Rather than more information, they need more interpretation of the information surgeons currently provide.33 The QPL questions are framed to help patients access surgeons’ knowledge in a way that patients can understand.

For patients, the QPL aims to promote informed decision making by supporting inquiry with questions they would not have thought to ask. Traditional models of clinical decision making theorize that patient preferences for decisional control are unique and decision dependent; some prefer complete physician control whereas others want equally shared decisions or complete control.34,35 Newer theoretical models propose that most patients want to be involved but simply do not know how.14 This problem can be mediated by previsit education or coaching with interventions such as the QPL. Because the patient experience is transactional (ie, determined by the actions of surgeons and patients),36 patients who are motivated to be involved are more likely to participate in collaborative decision making.

Although many versions of questions to ask physicians exist, they contain questions that patients ask spontaneously. In our observation, surgeons regularly inquire whether patients have questions and patients respond with logistic or technical concerns, such as “Can my wife sleep in my room?” and “Will you use stiches or staples?”23 Although these concerns are important to patients, they do little to engage patients in a discussion about trade-offs or to set realistic expectations for what life might be like after surgery. The QPL addresses specific needs that are not routinely queried by patients and families.

For family members, the QPL provides an opportunity to discuss unwanted outcomes at a time when the patient, surgeon, and family are together and able to communicate together. Postoperative conflict about life-supporting treatment is distressing37 because patients are not always clear about their preferences preoperatively,11 and surgeons are surprised when patients have not bought in to the use of prolonged life support.8 Although some patients may be too anxious to have such conversations before major surgery, we found many patients who desired this type of discussion.11 Furthermore, respondents in our focus groups and patients in the pilot understood they did not need to ask every question.

Our study has strengths and limitations. Our qualitative data was collected in multiple sites to capture geographic variation and demonstrated robust patterns of preoperative conversation.10 However, regional differences in how surgery is presented and understood by patients may not be captured by our sample. Although we have piloted the QPL and other investigators have demonstrated the efficacy of such interventions,18-22 the effectiveness of this QPL is unknown. We need evidence about how the QPL might improve these high-stakes conversations, support value-directed deliberation, set realistic postoperative expectations, and avoid conflict in the setting of an unwanted outcome. We have recently received funding from the Patient-Centered Outcomes Research Institute to test these effects in a randomized clinical trial.

Conclusions

We integrated the experiences of patients and family members through observational study and direct stakeholder engagement to create a QPL for older adults considering high-risk surgery. This intervention aims to overcome gaps in current practice by activating patients and family members before surgical consultation to promote deliberation about treatment choices and prepare patients for expected and unexpected outcomes.

Back to top
Article Information

Corresponding Author: Margaret L. Schwarze, MD, MPP, Department of Surgery, University of Wisconsin, 600 Highland Ave, G5/315 CSC, Madison, WI 53792 (schwarze@surgery.wisc.edu).

Accepted for Publication: March 25, 2016.

Published Online: June 29, 2016. doi:10.1001/jamasurg.2016.1308.

Author Contributions: Dr Schwarze had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: Steffens, Nabozny, Schmick, Schwarze.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Steffens, Tucholka, Schwarze.

Critical revision of the manuscript for important intellectual content: Steffens, Nabozny, Schmick, Brasel, Schwarze.

Statistical analysis: Schwarze.

Obtained funding: Steffens, Schmick, Schwarze.

Administrative, technical, or material support: Steffens, Tucholka, Nabozny, Schmick.

Study supervision: Steffens, Schwarze.

Conflict of Interest Disclosures: None reported.

Funding/Support: This study was supported by training award KL2TR000428 of the Clinical and Translational Science Award program (Dr Schwarze) as part of grant UL1TR000427 to the Institute for Clinical and Translational Research (ICTR), University of Wisconsin, from the National Institutes of Health, National Center for Advancing Translational Sciences; by grant 3086 from the ICTR, through the University of Wisconsin School of Medicine and Public Health’s Wisconsin Partnership Program (Dr Schwarze); by the Greenwall Foundation Kornfeld grant; by grant 5P60MD003428 from the National Institute for Minority Health and Health Disparities Center of Excellence program through the University of Wisconsin Collaborative Center for Health Equity; and by award CDR-1502-27462 from the Patient-Centered Outcomes Research Institute (PCORI).

Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Disclaimer: The statements in this article are solely the responsibility of the authors and do not necessarily represent the views of the PCORI, its board of governors, or its methodology committee.

Additional Contributions: Betty Kaiser, PhD, RN, and Gay Thomas, MA, Wisconsin Network for Research Support, provided guidance in creating the Patient and Family Advisory Council, planning the meetings, and evaluation. Nora Jacobson, PhD, and the Qualitative Research Group supported by the ICTR at the University of Wisconsin assisted with the study research design and analysis. None of these contributors received direct compensation.

References
1.
Goodney  PP, Stukel  TA, Lucas  FL, Finlayson  EV, Birkmeyer  JD.  Hospital volume, length of stay, and readmission rates in high-risk surgery.  Ann Surg. 2003;238(2):161-167.PubMedGoogle Scholar
2.
Finks  JF, Osborne  NH, Birkmeyer  JD.  Trends in hospital volume and operative mortality for high-risk surgery.  N Engl J Med. 2011;364(22):2128-2137.PubMedGoogle ScholarCrossref
3.
Schwarze  ML, Barnato  AE, Rathouz  PJ,  et al.  Development of a list of high-risk operations for patients 65 years and older.  JAMA Surg. 2015;150(4):325-331.PubMedGoogle ScholarCrossref
4.
Scarborough  JE, Pappas  TN, Bennett  KM, Lagoo-Deenadayalan  S.  Failure-to-pursue rescue: explaining excess mortality in elderly emergency general surgical patients with preexisting “do-not-resuscitate” orders.  Ann Surg. 2012;256(3):453-461.PubMedGoogle ScholarCrossref
5.
Paul Olson  TJ, Pinkerton  C, Brasel  KJ, Schwarze  ML.  Palliative surgery for malignant bowel obstruction from carcinomatosis: a systematic review.  JAMA Surg. 2014;149(4):383-392.PubMedGoogle ScholarCrossref
6.
Braddock  C  III, Hudak  PL, Feldman  JJ, Bereknyei  S, Frankel  RM, Levinson  W.  “Surgery is certainly one good option”: quality and time-efficiency of informed decision-making in surgery.  J Bone Joint Surg Am. 2008;90(9):1830-1838.PubMedGoogle ScholarCrossref
7.
Fagerlin  A, Sepucha  KR, Couper  MP, Levin  CA, Singer  E, Zikmund-Fisher  BJ.  Patients’ knowledge about 9 common health conditions: the DECISIONS survey.  Med Decis Making. 2010;30(5)(suppl):35S-52S.PubMedGoogle ScholarCrossref
8.
Schwarze  ML, Bradley  CT, Brasel  KJ.  Surgical “buy-in”: the contractual relationship between surgeons and patients that influences decisions regarding life-supporting therapy.  Crit Care Med. 2010;38(3):843-848.PubMedGoogle ScholarCrossref
9.
Schwarze  ML, Redmann  AJ, Alexander  GC, Brasel  KJ.  Surgeons expect patients to buy-in to postoperative life support preoperatively: results of a national survey.  Crit Care Med. 2013;41(1):1-8.PubMedGoogle ScholarCrossref
10.
Kruser  JM, Pecanac  KE, Brasel  KJ,  et al.  “And I think that we can fix it”: mental models used in high-risk surgical decision making.  Ann Surg. 2015;261(4):678-684.PubMedGoogle ScholarCrossref
11.
Nabozny  MJ, Kruser  JM, Steffens  NM,  et al.  Patient-reported limitations to surgical buy-in: a qualitative study of patients facing high-risk surgery [published online January 18, 2016].  Ann Surg. PubMedGoogle Scholar
12.
Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life. http://www.nationalacademies.org/hmd/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx. Released September 17, 2014. Accessed June 1, 2015.
13.
Couet  N, Desroches  S, Robitaille  H,  et al.  Assessments of the extent to which health-care providers involve patients in decision making: a systematic review of studies using the OPTION instrument.  Health Expect. 2015;18(4):542-561.PubMedGoogle ScholarCrossref
14.
Joseph-Williams  N, Elwyn  G, Edwards  A.  Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making.  Patient Educ Couns. 2014;94(3):291-309.PubMedGoogle ScholarCrossref
15.
Butow  PN, Dunn  SM, Tattersall  MH, Jones  QJ.  Patient participation in the cancer consultation: evaluation of a question prompt sheet.  Ann Oncol. 1994;5(3):199-204.PubMedGoogle Scholar
16.
Hibbard  JH, Stockard  J, Mahoney  ER, Tusler  M.  Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers.  Health Serv Res. 2004;39(4, pt 1):1005-1026.PubMedGoogle ScholarCrossref
17.
Maly  RC, Frank  JC, Marshall  GN, DiMatteo  MR, Reuben  DB.  Perceived efficacy in patient-physician interactions (PEPPI): validation of an instrument in older persons.  J Am Geriatr Soc. 1998;46(7):889-894.PubMedGoogle ScholarCrossref
18.
Walczak  A, Butow  PN, Clayton  JM,  et al.  Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers.  BMJ Open. 2014;4(6):e005745.PubMedGoogle ScholarCrossref
19.
Brandes  K, Linn  AJ, Butow  PN, van Weert  JC.  The characteristics and effectiveness of question prompt list interventions in oncology: a systematic review of the literature.  Psychooncology. 2015;24(3):245-252.PubMedGoogle ScholarCrossref
20.
Brown  R, Butow  PN, Boyer  MJ, Tattersall  MH.  Promoting patient participation in the cancer consultation: evaluation of a prompt sheet and coaching in question-asking.  Br J Cancer. 1999;80(1-2):242-248.PubMedGoogle ScholarCrossref
21.
Smets  EM, van Heijl  M, van Wijngaarden  AK, Henselmans  I, van Berge Henegouwen  MI.  Addressing patients’ information needs: a first evaluation of a question prompt sheet in the pretreatment consultation for patients with esophageal cancer.  Dis Esophagus. 2012;25(6):512-519.PubMedGoogle ScholarCrossref
22.
Clayton  JM, Butow  PN, Tattersall  MH,  et al.  Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care.  J Clin Oncol. 2007;25(6):715-723.PubMedGoogle ScholarCrossref
23.
Pecanac  KE, Kehler  JM, Brasel  KJ,  et al.  It’s big surgery: preoperative expressions of risk, responsibility, and commitment to treatment after high-risk operations.  Ann Surg. 2014;259(3):458-463.PubMedGoogle ScholarCrossref
24.
Patton  MQ.  Qualitative Evaluation and Research Methods. 4th ed. Thousand Oaks, CA: SAGE Publications Inc; 2001.
25.
Agency for Healthcare Research and Quality. Questions to ask your doctor. http://www.ahrq.gov/patients-consumers/patient-involvement/ask-your-doctor/index.html. Updated September 2012. Accessed November 26, 2014.
26.
American Association of Retired Persons. Questions to ask the doctor. http://www.aarp.org/relationships/caregiving-resource-center/info-08-2010/pc_questions_to_ask_the_doctor.html. Accessed November 26, 2014.
27.
Agency for Healthcare Research and Quality. Having surgery? what you need to know: questions to ask your doctor and your surgeon. http://archive.ahrq.gov/patients-consumers/diagnosis-treatment/surgery/questions/index.html. Updated October 2005. Accessed November 26, 2014.
28.
Doctella. https://www.doctella.com/. Accessed November 26, 2014.
29.
Clayton  J, Butow  P, Tattersall  M,  et al.  Asking questions can help: development and preliminary evaluation of a question prompt list for palliative care patients.  Br J Cancer. 2003;89(11):2069-2077.PubMedGoogle ScholarCrossref
30.
Brandes  K, Butow  PN, Tattersall  MH,  et al.  Advanced cancer patients’ and caregivers’ use of a Question Prompt List.  Patient Educ Couns. 2014;97(1):30-37.PubMedGoogle ScholarCrossref
31.
Johns Hopkins Medicine. Questions to ask before surgery. http://www.hopkinsmedicine.org/healthlibrary/conditions/surgical_care/questions_to_ask_before_surgery_85,P01409/. Accessed November 26, 2014.
32.
Wisconsin Network for Research Support. Community advisors on research design and strategies. http://winrs.son.wisc.edu/index.php/services/cards/. Accessed February 16, 2015.
33.
Russ  AJ, Kaufman  SR.  Family perceptions of prognosis, silence, and the “suddenness” of death.  Cult Med Psychiatry. 2005;29(1):103-123.PubMedGoogle ScholarCrossref
34.
Singh  JA, Sloan  JA, Atherton  PJ,  et al.  Preferred roles in treatment decision making among patients with cancer: a pooled analysis of studies using the Control Preferences Scale.  Am J Manag Care. 2010;16(9):688-696.PubMedGoogle Scholar
35.
Degner  LF, Sloan  JA, Venkatesh  P.  The Control Preferences Scale.  Can J Nurs Res. 1997;29(3):21-43.PubMedGoogle Scholar
36.
Greene  J, Hibbard  JH, Sacks  R, Overton  V.  When seeing the same physician, highly activated patients have better care experiences than less activated patients.  Health Aff (Millwood). 2013;32(7):1299-1305.PubMedGoogle ScholarCrossref
37.
Danjoux Meth  N, Lawless  B, Hawryluck  L.  Conflicts in the ICU: perspectives of administrators and clinicians.  Intensive Care Med. 2009;35(12):2068-2077.PubMedGoogle ScholarCrossref
×