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Abstract

Summary: Public Health – Seattle & King County held public engagement meetings to obtain feedback and recommendations from the local community regarding the prioritization of scarce medical services during a severe pandemic, and how those services should be allocated. A diverse group of participants from the general public and key stakeholders utilized multiple methods to deliberate and provide input, including Q-sort; vignette-driven, “World Café”-style discussions; and pre- and post-surveys. The public engagement project demonstrated a constructive process to gauge public values that can inform ethics-laden policy decisions about medical service prioritization. Feedback from participants indicated commonly held values, including a desire to maximize resources, strong concerns about equity, and protection of vulnerable populations. The public engagement process yielded additional benefits by fostering trust towards public health decision making and laying the groundwork for establishing support for crisis standards of care among key stakeholders and potential opinion leaders.
Keywords: Public engagement model, altered standards of care, medical service prioritization, pandemic influenza planning.
Citation: Li-Vollmer M. Health care decisions in disasters: engaging the public on medical service prioritization during a severe influenza pandemic. J Participat Med. 2010 Dec 14; 2:e17.
Published: December 14, 2010.
Competing Interests: The author has declared that no competing interests exist.

Introduction

A severe influenza pandemic would have a profound impact on the health care delivery system. Shortages of life-sustaining medical resources, including hospital beds, health care staff, intensive care unit resources, medical supplies, equipment, and medications are expected.^[1] Rationing of scarce resources and alterations in the standards of health care delivery are widely acknowledged to be necessary considerations in response to such large-scale health emergencies,^{[2] [3]} yet there has been little public dialogue on these issues. As a result, the limited guidance that exists has not been directly informed by public values and opinions. To address this gap, Public Health – Seattle & King County (PHSKC) engaged the public to better understand its values and priorities regarding the delivery of medical services and how those services will be allocated during a severe influenza pandemic. By involving the public, PHSKC sought to inform the policies, plans, and guidelines about medical service prioritization developed in Washington State based on actual values and ethical perspectives held by the people who live in the region. This article explains the methods PHSKC used to gather input, provides an overview of results, and describes the benefit of public engagement to planning for prioritization of scarce medical resources during disasters.

Case Presentation

It is likely that many critical medical services provided in a community will need to be either severely curtailed or temporarily suspended during a severe pandemic or other catastrophic event, due to human and medical resource limitations.^[4] Despite the significant impact on the community, to date there has been little public dialogue on a standard approach to the triage of patients or implementation of crisis standards of medical care, and at the time of this project implementation, no sufficiently detailed guidelines had emerged from professional organizations. Input from the public was needed both to help determine which health and medical services should be prioritized, and how these services will be allocated among ill persons when the demand exceeds the available capacity. Supported by a grant issued to the Washington State Department of Health from the Centers for Disease Control (CDC), PHSKC launched a yearlong Public Engagement Project on Medical Service Prioritization During an Influenza Pandemic from September 2008 to September 2009.

Project Goals and Framing Questions

A steering committee representing medical services and care providers, health care experts, community advocates and emergency responders helped identify the goals, design the process, recruit participants to the forums, and provide input to and review of the final report. The steering committee identified the following goals:

1. Obtain feedback and recommendations from the community regarding the prioritization of medical services during a severe pandemic, and how those services should be allocated.
2. Explicitly define the community’s values underlying the above recommendations.
3. Ensure the incorporation of community values and priorities into regional planning for delivery of health and medical services during a severe pandemic.

Based on the input from the steering committee, the framing questions used to focus the engagement with the public included:

1. “Should we change how medical treatment decisions are made during an influenza pandemic?”
2. “What should the goal(s) be when decisions are made about medical treatment during an influenza pandemic?”
3. “How should decisions be made about rationing of limited, life-saving resources?”
4. “Should decisions about medical treatment be consistent?”

Public Engagement Meeting Recruitment

PHSKC convened four community engagement meetings held in different geographical locations throughout King County, Washington beginning in April 2009. Two meetings were conducted in English and one in Spanish for the general public. One meeting was held for key stakeholders representing sectors likely to be affected by decisions about medical service prioritization.

To assist in the recruitment of members of the general public (“public participants”), PHSKC contracted with community-based organizations to help recruit participants, consult on culturally appropriate methods, and check translations of the materials. Additionally, recruitment was conducted through outreach with schools, volunteer emergency response organizations, parent groups, faith-based organizations, housing organizations, and student organizations. The opportunity for participation was advertised on Craigslist and through flyers posted in community centers, libraries, and other public places located near the sites of the public engagement meetings. Participants were offered $100 for attending the 8-hour meeting, to acknowledge the significant time commitment required. This is standard practice for focus group and audience research, and advised by community advocates on the project’s steering committee who felt that the potential costs incurred for transportation, childcare, and loss of any work hours would deter participation from lower income groups.

Recruitment efforts resulted in 106 English-speaking public participants and 17 Spanish-speaking participants who represented a broad spectrum according to ethnicity, age, education, and income. The majority of participants were female, with 70% female, 30% male. Twenty-four percent of the public participants identified themselves as being of Hispanic origin or ethnic background, reflecting the Spanish-speaking meeting (see Table 1).

Almost two-thirds of the participants identified themselves as white, with 11% African American, 7% Asian, 1% Native American, and 19% identifying as “other” (see Table 2).

The public participants also represented a diverse age span (see Table 3), range of education (see Table 4), and household income level (see Table 5).

At the key stakeholder meeting, the 30 participants were recruited from a wide range of community organizations and agencies, including hospitals, health care providers, emergency management, large employers, faith-based organizations, schools, and social service and advocacy organizations serving diverse populations. Forty-three percent of stakeholders were male and 57% female. Ten percent of stakeholders identified themselves as Hispanic. Seventy-five percent of the stakeholders identified as white, 15% identified as black or African American, 5% identified as Asian, and 5% identified as other. The vast majority of stakeholders were between the ages of 45-64. All stakeholder participants had attended college and most had advanced degrees. Their income levels were also substantially higher than those in the public participant group, with 62% receiving annual household incomes of over $100,000.

Meeting Design

Several decision making and deliberative tools were chosen to illuminate the range of opinions that were held among the participants, help them understand one another’s perspectives, and document where common ground existed: Q-sort methodology, facilitated breakout session discussions of hypothetical scenarios (or vignettes), and plenary discussions. A professional facilitator from the Meridian Institute led each meeting. All meetings began with a presentation to orient participants as to how decisions are currently made about medical resources and how that could change during catastrophic disasters. Breakout groups of approximately eight participants (convened during the Q-sort and scenario discussions) were led by small-group facilitators. The discussions were documented by note takers at each table, and PHSKC staff circulated the room to answer questions from participants.

Q-sort methodology was used to address the question, “How should decisions be made about rationing of limited, life-sustaining resources?” The activity was designed to help PHSKC understand what considerations were most important to the individual participants when it came to decisions about health care treatment during disasters. Participants sorted 27 opinion statements taken from real opinions given by members of the general public and health care experts. Examples of the opinion statements included, “You have to save the greatest number of people, even if it means that some people aren’t going to be treated and will die,” and “Making sure decisions are fair is more important than getting people treated as quickly as possible.” The participants ranked the statements along a continuum from “most important considerations” to “least important,” and then engaged in small-group, facilitated discussions about the rationale behind their rankings. The exercise was repeated at the end of the meeting to help illuminate changes in individual opinions that resulted from the deliberations.

In each forum, breakout groups were also asked to consider a series of hypothetical scenarios or “vignettes” intended to help participants to personalize the kind of decisions that will likely be made in the case of a severe influenza pandemic. Participants in the small groups moved through a suite of three vignettes. Following a “World Café” process, each group was asked to build on the discussion of the previous group as part of a progressive conversation that integrated the ideas of all perspectives into a coherent outcome. Plenary discussions were also facilitated among the full group to share perspectives and outcomes across breakout groups.

In addition to these deliberative group methods, feedback was gathered from each individual in the form of pre- and post-survey questions. The questions asked participants to indicate level of priority for specific groups, their support for standardization of altered standards of care, and the importance given to specific goals for medical service prioritization.

Results of Deliberation

Findings were drawn from qualitative data from documentation of plenary and small group discussions, Q-sort data, and the pre- and post-surveys. The data strongly reflected the participants’ opinion that difficult choices need to be made in advance of a severe pandemic in order to ensure a fair, equitable and well-managed system of response.

1. “Should we change how medical treatment decisions are made during an influenza pandemic?”
Both the public participants and the stakeholders overwhelmingly agreed that disasters will require implementation of altered decision-making processes and protocols to determine allocation of scarce medical resources.

2. “What should the goal(s) be when decisions are made about medical treatment during an influenza pandemic?”
The main goal voiced by public participants and stakeholders alike was to treat as many people as possible, even if that results in lowered standards of care. The consideration that ranked highest among both groups was to save the greatest number of people, even if it means that some people aren’t treated and don’t survive. Another top-ranking consideration was to maximize medical resources to help the most people even it results in sub-optimal treatment. In the meeting discussions, participants also strongly voiced the importance of a prioritization system that is fair and accessible to all people.

3. “How should decisions be made about rationing of limited, life-saving resources?”
Survivability was the top decision-making priority. By the close of the meetings, 85% of the public participants and 96% of the stakeholders agreed that hospitals should take patient survivability into account regarding allocation of scarce, life-saving medical care (an increase from 78% of the public and 93% of the stakeholders at the beginning of the meetings). Participants regarded the expenditure of significant resources on an individual who is not likely to survive, or will survive with a low quality of life as a sub-optimal use of medical resources.

Age considerations frequently arose at each of the meetings. The pre- and post-surveys found very strong support by the public participants for prioritizing children, but the strength of these opinions diminished over the course of the meetings (see Table 6).

Pre-citizens, n=120; Post-citizens, n=122; Pre-stakeholders, n=28, Post-stakeholders, n=25

Pregnant women also received priority from many participants, but support for that prioritization diminished somewhat over the course of the meeting (see Table 7).

Pre-citizens, n=124; Post-citizens, n=122; Pre-stakeholders, n=28, Post-stakeholders, n=25

Overall, participants reflected a high degree of faith and trust in medical providers (doctors and nurses in particular) to make appropriate determinations based on their expert opinion about survivability.

Many participants supported doctors, nurses, and first responders receiving prioritization because of their role providing treatment to many other people (see Table 8).

Pre-citizens, n=124; Post-citizens, n=120; Pre-stakeholders, n=28, Post-stakeholders, n=24

Some criteria were deemed unacceptable. Many participants expressed opinions that decision making criteria that discriminate according to race, gender, culture, legal status, nationality, or language are not acceptable. At both the public and stakeholder meetings, participants ranked the ability to pay as the least important consideration in determining medical resource prioritization.

By the end of the meetings, 89% of public participants and 100% of stakeholders disagreed with the statement, “Hospitals should provide lifesaving care on a first come, first served basis regardless of other considerations.” They also felt that random selection should not be used because it would not ensure the best use of resources.

4. “Should decisions about medical treatment be consistent?”
Across all forums, the participants raised the need to establish standards or guidelines for medical resource allocation that health care facilities could consistently follow. Many voiced concerns that inconsistent strategies and decision making frameworks among hospitals and regions could lead to confusion, exploitation, and, possibly, chaos among the general public. However, some flexibility within the standardization was widely preferred, to allow distribution of resources based on demand and availability within a region.

Discussion

The considerable agreement among the participants at all four meetings offers a strong endorsement for an altered decision making process for the prioritization of scarce, life-sustaining medical resources during times of disaster. There was an overwhelming rejection of “first come, first served” as a basis for determining access to scarce, life-sustaining medical resources. Diverse members of the public and representatives of health care, emergency management, and other key stakeholders agreed that prioritization of medical services should aim to save the greatest number of people, factoring in survivability of those treated, even if standards of care must be lowered. There was wide agreement that first responders and health care workers should receive high priority, with children and pregnant women given some priority when all other factors are equal.

Through the public engagement process, members of a diverse public were able to express the values they would apply to allocation of scarce resources in difficult situations. Public participants, as well as key stakeholders, wanted to maximize the effective use of limited resources. The strong support for prioritizing healthcare workers was related to maximizing health resources, and the importance given to survivability as a criteria reflected the desire to reserve resources for those mostly likely to benefit and recover. Concerns about equity were prominent at all public meetings, with participants voicing fears that some people (such as undocumented immigrants or incarcerated people) would be ineligible for lifesaving resources, or that additional barriers might impact populations with special needs (such as limited English proficient groups and people with disabilities). Protecting vulnerable populations was also evident in the priority given to children and pregnant women by some participants. The values expressed by participants in this project indicate the critical need to specifically address issues of equity in any guidance for crisis standards of care, and to communicate the rationale for prioritizing some groups over others in terms of benefits to the overall response, maximization of resources and longterm benefit to society.

The pre- and post-survey data indicated movement on a few topics in particular, suggesting the exposure to the briefing by public health experts and the process of group deliberation influenced participants’ perspectives. In general, the prioritization of any specific group diminished through the course of the meetings, most dramatically in the amount of priority given to children and pregnant women (see Tables 6 and 7). At the same time, the emphasis on survivability increased. These shifts in perspective were evident in the small group discussions, where a number of participants expressed an increasing discomfort in giving priority based on roles in society or age. For many of those participants, survivability seemed a less impartial criterion that would also capture some of the younger people who tend to have a better ability to recover.

Strengths of the Public Engagement Process

Demonstrating that we took the time and effort to understand the public’s values will likely help garner acceptance of any forthcoming guidance for prioritization of scarce medical resources. Through the project evaluation, conducted independently by the University of Nebraska Public Policy Center,^[5] participants expressed confidence that the engagement process led to a productive outcome that would increase public support for resulting policy. The evaluation consisted of pre- and post-meeting surveys completed by participants, ad hoc focus groups with participants, and interviews with steering committee members to evaluate the project process. Highlights from this evaluation found that 90% or more of the public participants and nearly all of the stakeholders agreed that the public engagement process:

• Produced a valuable outcome;
• produced credible, relevant, and independent information;
• helped them better understand the types of trade-offs involved; and
• will increase the public’s support of the decision ultimately made.

PHSKC also received informal feedback from key healthcare partners who enthusiastically endorsed the public engagement process and particularly appreciated the opportunity to hear from different perspectives outside of the healthcare system. From PHSKC’s standpoint as an agency of public health emergency planners, this public engagement was a success in offering insight into broad public values as well as specific recommendations from the public for prioritization of scarce resources; in addition, it appears to have fostered trust towards public health decision making and laid groundwork for establishing support for crisis standards of care among key stakeholders and individuals.

Limitations

This project only involved a very small proportion of the local population, so it is limited in its ability to directly boost support for policy initiatives. However, by involving community leaders and advocates, as well as leaders in healthcare and emergency management, it has potential to build support among opinion leaders. Other limitations of this project are that this type of process does not capture a truly representative sample of the public, in size and composition. As with most health initiatives, it drew more heavily from female participants. There was also a relatively high proportion of very low-income public participants; this may reflect the clientele of the community partners who assisted with recruitment, and the relative value of the $100 incentive given for participation.

Use of Results

Planning for crisis standards of care is at a relatively early stage in the state of Washington, where this public engagement project took place. The results of this project, therefore, have the potential to inform policy as it develops. To that end, the results were presented to the Washington State Health Officer and plans are underway to present the findings to a steering committee of the Washington State Public Health Emergency Planning Regions. During the 2009 H1N1 influenza outbreak, PHSKC referenced the findings of this project when making local decisions about H1N1 medical resources; in particular, the public’s expressed preference for giving priority to healthcare workers and pregnant women for scarce medical resources confirmed local plans for distribution of limited supplies of H1N1 vaccine.

At a national level, the results from this public engagement project were presented at the Institute of Medicine’s workshop Establishing Standards of Care for Use in Disaster Situations in September 2009. The report from the IOM workshop subsequently recommended that jurisdictions conduct a public engagement process when developing crisis standards of care protocols, referencing this project as an example.^[6]

Conclusions

If the public does not have confidence in decisions about access to scarce, life-sustaining medical resources in the midst of a disaster, then healthcare systems, health officials, and government authorities will become the targets of considerable public distrust and outrage. With such controversial and ethics-laden decisions on the table, PHSKC did not want to form any guidelines based on its assumptions about what the people in their region value. The people’s direct input was needed on how they want these decisions made.

In this case, the strong agreement by both the public and key stakeholders on goals and prioritization criteria for altered decision making processes provide policy makers with a strong gauge of public opinion. Policy makers can move forward on planning with the understanding that both the public and key stakeholders prioritize the maximization of resources and are willing to accept lowered standards of care. The emphasis they placed on issues of equity direct policy-makers to ensure that any protocols developed explicitly enforce equity and deter discrimination. The participants’ desire to see such decisions standardized at the state or even national level is a call to action for state and national policymakers to move forward with plans to establish crisis standards of care guidelines for the healthcare system.

PHSKC’s experience with this public engagement process also highlights the strength of this method for involving a broad spectrum of the public in policy development. At the outset of the project, news coverage of public furor over “death panels” and other issues related to health reform had prepared us to expect contention and possibly animosity at these meetings. Furthermore, with a diverse pool of public participants who ranged from college educators to homeless individuals to homemakers, we did not know what to expect in terms of the tenor of interactions between people at the meetings. But despite the complex and emotionally charged nature of the topic, the conversations reflected respect for diverse views, a willingness to consider complicating factors and openness to understanding other people’s concerns. The fact that many participants shifted their opinions over the course of the individual meetings points to the ability of thoughtful dialogue to influence public opinion. At the meetings, we witnessed how laypeople were able to grasp medical considerations of survivability and quality of life in conversations with health professionals, and we also saw how medical experts considered community perspectives when introduced by advocates at their tables. In addition, this project demonstrates that when members of the public are invited to be part of the policymaking process, they take that role seriously and are willing to reconsider their previously held beliefs and engage in authentic deliberation in the interest of making better decisions for the community at large.

Acknowledgement

The author wishes to acknowledge the support of Public Health – Seattle & King County, Centers for Disease Control and Prevention (CDC), and Washington State Department of Health.

References

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2. ^[2]Tabery J, Mackett CW, University of Pittsburgh Medical Center Influenza Task Force’s Triage Review Board. Ethics of triage in the event of an influenza pandemic. Disaster Med Public Health Preparedness 2008; 2:114-118.↩
3. ^[3]Christian MD, Devereaux AV, Dichter JR, Geiling JA, Rubinson L. Definitive care for the critically ill during a disaster: current capabilities and limitations: from a Task Force for Mass Critical Care summit meeting, January 26-27, 2007, Chicago, IL. Chest 2008; 133:8S-17S.↩
4. ^[4]Challen K, Bentley A, Bright J, Walter D. Clinical review: mass casualty triage — pandemic influenza and critical care. Critical Care 2007; 11: 212.↩
5. ^[5]Public engagement pilot project on pandemic influenza evaluation. University of Nebraska Public Policy Center. Available at: http://ppc.unl.edu/project/PublicEngagementPilotProjectPandemicInfluenzaEvaluation. Accessed November 1, 2010.↩
6. ^[6]Altevogt B, Stroud C, Hanson SL, Hanfling D, Gostin, LO, eds. Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations: A Letter Report. Washington, DC: National Academies Press; 2009. Available at: http://www.nap.edu/catalog/12749.html. Accessed October 24, 2009.↩

Copyright: © 2010 Meredith Li-Vollmer. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.