Development of a Decision Aid for Patients and Families Considering Hospice

Abstract

Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care.

Objective: To develop a theory-based and unbiased hospice specific PtDA.

Design: Guided by the Ottawa Decision Support Framework and International Patient Decision Aid Standards, we used a theory-driven, eight-step, iterative, user-centered approach with multistakeholder input to develop a hospice-specific PtDA for anyone facing end-of-life decisions.

Subjects: Feedback was obtained from a 10-member Patient Advisory Panel composed of lay patient advisors; focus groups of hospice providers, family caregivers, and patients; and the Palliative Care Research Group at University of Colorado Hospital consisting of palliative care physicians, midlevel providers, nurses, social workers, chaplains, and researchers.

Results: There are many challenges in developing an unbiased hospice decision aid, including (1) balancing the provision of education (eligibility, payment) with decisional support, (2) clarifying values and incorporating emotion, (3) ideally representing the potential downsides of hospice, and (4) adequately capturing and describing care alternatives to hospice. Within this context, we developed a 12-page article and 17-minute video PtDAs. The PtDA openly acknowledges the emotional complexity of the decision and incorporates values clarification techniques to help decision makers reflect and evaluate their goals and preferences for end-of-life care.

Conclusions: Hospice decision making is complex and emotional, demanding high-quality SDM aided by a formal PtDA. This work resulted in a freely available article and video PtDA for patients considering hospice. The effectiveness and implementation of these tools will be studied in future research. Clinical Trials Registration (NCT03794700 & NCT04458090).

Introduction

Although hospice use has increased in the last several decades, it remains underutilized.¹ The reasons for underuse are numerous and multifactorial. Chief among them are the misconceptions that hospice equates to “giving up” and that hospice hastens death, despite evidence that hospice generally improves the experience of dying for patients and families.^2–4 In fact, some evidence shows hospice recipients experience longer survival times than those not enrolled in hospice.^3,5–7 Further, research indicates that patients and families have trouble understanding what hospice care is, what the potential benefits are, where hospice care is delivered, and if insurance benefits pay for care.^8,9 As a result of these misconceptions, fewer than 50% of Medicare decedents enroll in hospice before death.^10,11 Those who do enroll in hospice often do so late, with more than a third of enrollees receiving care for less than seven days.^1,11 Short stays do not allow patients and families to take full advantage of the breadth of hospice services, and it overburdens hospices because enrollment expenses are not defrayed over time.^1,11 There is a pressing need to improve patient knowledge of hospice and facilitate better communication between patients and providers. One strategy is improved shared decision making (SDM).

The goals of SDM include improved patient-provider communication, information sharing, and collaborative decision making.^12–14 One SDM technique is the use of patient decision aids (PtDAs). PtDAs provide information on treatment options, help elicit patient values, and facilitate deliberation between patients and providers on treatment choices.^15,16 PtDAs assume various forms, including articles (e.g., leaflets, pamphlets, and booklets), electronic media (e.g., audio recordings, videos), and web-based interactive portals.¹⁷ A Cochrane review of 105 randomized trials of PtDAs demonstrated a reduction of decisional conflict, improved patient-provider communication, and increased patient involvement in medical decision making.¹⁷ Video PtDAs are effective in older patients and patients with lower literacy and numeracy.^18–20 It is critical that PtDAs present balanced, evidence-based, accurate, neutral, and unbiased information.^21,22

We conducted a rigorous environmental scan²³ of the current PtDAs available for hospice care and found only seven PtDAs mentioned hospice as a potential secondary treatment option for people with end-stage heart failure, cancer, or kidney disease. None of these PtDAs explained the nuances of hospice care. To address this, we used an iterative, user-centered approach with multistakeholder input, guided by the Ottawa Decision Support Framework (ODSF)²⁴ and the International Patient Decision Aid Standards (IPDAS),²⁵ to develop a hospice-specific PtDA for anyone facing end-of-life decisions, regardless of diagnosis.

Methods

Preliminary work

Our prior work included an environmental scan²³ and a qualitative needs assessment.⁸ We found that there are no freely available hospice PtDAs and there is need for high quality, nonbiased SDM materials specific to hospice. Our needs assessment identified four major decision needs for people considering hospice care, which are (1) What is hospice?; (2) Why do I need hospice?; (3) Where do I get hospice?; and (4) How do I pay for hospice? The needs assessment included 4 patients, 32 informal caregivers, and 27 hospice providers and is described elsewhere.⁸ This project was approved Institutional Review Board at the University of Colorado (#18-1138 & 18-1675).

PtDA development framework

The process of making end-of-life decisions is emotional and complex. Therefore, the risks and benefits of hospice care should be presented in a nonbiased manner so that the decision maker is not influenced by the material offered, but rather relies on their own cognitive processes and values to formulate decisions. We used two well-known SDM frameworks to guide development of our PtDA. The ODSF, which asserts that participants' decisional needs (e.g., knowledge, values, support) will affect decision quality, which then impacts subsequent outcomes such as emotions (e.g., regret, blame), behavior, and appropriate use of health services.²⁴ The framework stresses that decision support (e.g., decision aids) can improve decision quality by addressing unresolved decisional needs.²⁴ The IPDAS guidelines provide an evidence-informed framework for assessing and improving the content, development, implementation, and evaluation of PtDAs.²⁵ IPDAS identifies 12 decision quality domains central to developing PtDAs that present balanced information, provide information about all treatment options, establish effectiveness, and address health literacy.²⁵ The IPDAS guidelines underscore the importance of accuracy, clarity, and neutrality in PtDAs.

Novel eight-step decision aid development process

To integrate the principles of IPDAS and OSDF into our development process, we developed an eight-step approach to create an article and video hospice PtDAs (Fig. 1).²⁶ It is important to note that our PtDA is meant to help facilitate conversations about hospice care with decision makers, and not designed to replace these critical conversations.

FIG. 1.

Decision aid development process. Describes the iterative development process.

Steps 1 and 2: Content development and drafting the initial version

Content for the article PtDA was developed using data from our qualitative needs assessment,⁸ our review of the evidence in favor of and against hospice, and by applying the frameworks described above.^24,25

Steps 3 and 4: Draft and iteratively develop the article hospice decision aid

We showed the iterated drafts of the PtDA to focus groups, including patients, informal caregivers, and hospice providers. We also showed the tool to an expert panel of palliative care and hospice physicians and nurses, as well as a group of researchers specializing in end-of-life issues at the University of Colorado. The article PtDA underwent 10 iterations before a completion near final version. We kept a detailed audit trail recording the feedback and changes made to the PtDA based on the feedback received from all who reviewed the PtDA during the development process (see article PtDA and evidence document at https://patientdecisionaid.org/hospice).

Steps 5 through 8: Finalize paper decision aid and develop film

The content of the near final PtDA was translated into a video script. Members of the research team (C.E.T., D.D.M., G.V., and M.P.I.) read iterations of the script out loud to vet overall flow and to ensure that the content was consistent with the article PtDA and the language used was appropriate and understandable. Patient narratives were added to provide contextual richness. We reviewed and selected narratives of informal caregivers and hospice providers and selected narratives that provided information about hospice care, but were not biased toward hospice as the best decision.²⁷

As we iterated different versions, we engaged a patient stakeholder group that comprised 10 lay patient advisors, the Palliative Care Research Group at University of Colorado Health hospital consisting of palliative care physicians, midlevel providers, nurses, social workers, chaplains, and researchers. In addition, we solicited input from local hospice providers with whom we have professional relationships.

Results

We developed a 12-page article booklet and an accompanying 17-minute video designed to help facilitate communication and SDM around hospice care. The complementary tools are available in both English and Spanish, with an overall eighth-grade literacy level.

Balancing education with decision support

Key barriers to hospice enrollment are the pervasive misconceptions and lack of understanding of hospice care and services. IPDAS recommends that PtDAs provide enough information for decision makers to have the necessary knowledge to make informed choices. One of the challenges we experienced when developing the hospice PtDA was balancing the need to provide education about hospice care, while simultaneously highlighting that patients have choices about what type of care they would like to receive. Our needs assessment revealed several gaps in hospice knowledge that we addressed in the PtDA. To comply with IPDAS recommendations, we devote several pages of our PtDA to explaining the fundamentals of hospice care, such as payment mechanisms for hospice, eligibility requirements, and information about how and where patients receive services.

Payment mechanism for hospice care

Because of the confusion surrounding payment, stakeholders felt that it was important to address how insurance pays for hospice in our PtDA. The first few iterations of the tool had approximately a half page of text devoted to hospice payment mechanisms. After receiving feedback from our stakeholders, especially the lay patients and caregivers, we expanded our discussion of costs to an entire page of the PtDA. The page explains the different payment sources for hospice care and broadly describes the services most insurance provide to hospice recipients.

Hospice eligibility requirements

It was clear from our needs assessment and a review of the literature that there is much confusion about the hospice eligibility requirements. Medicare is the primary payer of hospice services and the Medicare Hospice Benefit defines the eligibility criteria for services. These requirements in general include the following: (1) a hospice physician and the patient's primary care physician must agree that the patient has six months or less to live, (2) the patient must agree to accept palliative care and forgo any life prolonging treatments, and (3) the patient signs a statement agreeing to forgo life prolonging care for all of their medical conditions.^11,28 However, the eligibility criteria is a bit more complex. For this reason, we chose to include very basic information about hospice eligibility in the PtDA. The life expectancy mandate creates confusion and anxiety as people feared if they or their loved one remained alive after six months that hospice services would be terminated. We addressed this concern by stating that services can extend beyond six months. We acknowledge that in real-world scenarios the eligibility criteria for hospice is more nuanced than what is presented in our PtDA, however, we intentionally chose to provide a basic overview of eligibility. Our goal is to provide enough information to enhance more detailed conversations (Fig. 2).

FIG. 2.

Hospice eligibility. The top is a screen shot from the article PtDA about eligibility. The bottom is a screen shot from the video PtDA about hospice eligibility. PtDA, patient decision aid.

Clarifying values and incorporating emotions

The decision to enroll in hospice is difficult, in part, because it is sometimes a question of if hospice is appropriate and other times is a question of when hospice is appropriate. We attempted to recognize this tension by devoting a page in the PtDA to the timing of hospice enrollment. We make clear that hospice care is a choice that is right for some people and not for others. Either choice is equally valid. We provide exemplars from patients we interviewed in our needs assessment to provide context to why a person may choose or not choose hospice care (Fig. 3).

FIG. 3.

Weighing options. The top is a screen shot from the article PtDA about timing of hospice enrollment. The bottom is a screen shot from the video PtDA about weighing benefits and drawbacks of hospice.

Emotion in decision aid

We specifically incorporated aspects of emotion into our PtDA, dedicating the first page of the PtDA to affirming the complexity and emotion involved in making end-of-life decisions. The narrator in the accompanying video also openly addresses the emotion and complexity of the decision.

Values clarification

We incorporated values-clarification elements into the PtDA, by incorporating both a list questions intended to both encourage critical thinking and reflection of personal goals and values (e.g., Am I ready to stop curative care?). In addition, we included narratives in both the article and video PtDAs to highlight the benefits and drawbacks of hospice care, including why some patients choose hospice and why others opt to continue curative care. By including countervailing patient narratives, our goal was to help regulate emotion and fatalistic thinking when making highly emotional and complex decisions (Figs. 4 and 5).

FIG. 4.

Patient narratives from the article PtDA. Screenshot of patient narratives from the article PtDA.

FIG. 5.

Values clarification. The top is a screenshot from the video PtDA of a hospice provider and informal family caregiver. Person on the left is a hospice provider and person on right is an informal family caregiver. The bottom is a screen shot from the video PtDA of the values clarification questions.

Need to avoid cultural and/or religious tailoring

We specifically asked participants if they felt that the PtDAs should be culturally or religiously tailored and our question was met with intense frustration, especially by participants of underrepresented groups. Unanimously, participants felt that death is a universal issue and that tailoring the decision support materials could be offensive and potentially stigmatizing. They were more concerned that the PtDA provide clear and accurate information about hospice to assist in their decision-making process (Table 1). For these reasons, we developed generalized patient PtDAs that do not address issues of certain cultures or specific religions. Again, the purpose of the PtDA is to introduce general concepts that then facilitate more detailed conversations between patients and their providers.

Table 1.

Focus Group Quotes on Tailoring

Native American woman	“Why does it have to be different for me just because I am native?”
African American woman	“I don't think it has anything to do with culture or race or anything. We could do a better job of making our—just saying what we want our life to be like if it's a prolonged situation, and also you know, what we want our atmosphere to be like.”
Asian American women	“In a lot of the Asian cultures, what you do when your parents are older is they move into your home and you take care of them…it's even tougher to make the decision to move to hospice, especially around the stigma and everything…in the health care field, they actually know a lot of people who don't really know what hospice is in the health care field, which I think's kind of disturbing. Because if they're trying to explain to a patient what hospice is and they don't know what it is—so, I think that might be a little bit why there's a stigma.”
Hospice chaplain	“But the intent of your spiritual support in hospice is not necessarily from any one faith perspective. I've had some of the best conversations I've ever had with the guys who tell me they were atheists and didn't want to see me. I sat down and asked him. I said, ‘So did you grow up atheist? How did you come to this decision that this is where you sit?’ And he said, ‘Nobody from a faith perspective has ever asked me that before and I can't believe you're willing to sit here and have this conversation with me.’ And I said, ‘I want to know you. Your faith is only a part of who you are. So I want to know about you.’”

Ideally representing the downsides of hospice

A key challenge in developing this PtDA was not to develop a PtDA that oversold hospice. Our prior work highlighted that people often felt hospice was presented as a sales pitch rather than an alternative treatment option to curative care. We aimed to create a balanced and neutral PtDA by highlighting some downsides of hospice care, including forgoing curative treatments and in some cases, giving up current providers for hospice providers. In addition, hospice enrollees are discouraged to call emergency medical services, which can be scary and challenging when a loved one is near the end-of-life. Being asked to give up curative treatments and accepting one's own mortality is a tremendous emotional strain that can cause distress to the patient, family, and other loved ones. There are two pages in the PtDA that address the tradeoffs between hospice and curative care. The goal is to highlight that hospice enrollment is a choice that may not be appropriate for everyone.

Language and considerations around the term “Curative Care”

One of the bigger challenges in developing this PtDA was determining what terminology to use while describing the treatment choices other than hospice. Some terms considered included “curative care,” “potentially life-prolonging care” or “life-extending care.” A tension clearly existed between the patient's need for a clear term that was easy to understand and the terminology that clinicians preferred. Clinicians reviewing our PtDA had a strong preference for the term “potentially life-prolonging” care given that many therapies are not necessarily curative but do prolong life (e.g., intravenous [IV] fluids). However, the hospice providers, patients, and caregivers strongly preferred the term “curative care.” They felt the term “curative care” better described the differences between choosing hospice care versus not choosing hospice. Bearing in mind the IPDAS recommendations for patient-centered materials, we ultimately chose to use the term “curative care” due to its lower literacy and to prioritize the feedback from patients and families.

Discussion

End-of-life decision making, particularly around the choice to enroll in hospice, can be challenging due to misconceptions, miscommunications, and significant changes in care requiring trade-offs. Until now, there have been no freely available PtDAs to help with hospice decision making.²³ Our prior research identified several key decisional needs, and here, we have addressed those in the development of our hospice article and video tools. We were careful to incorporate feedback from our stakeholders into each revision of the PtDAs until we achieved a final version that was informative and portrayed hospice as a choice. We outlined a rigorous, iterative, and theory-based methodology for PtDA development. Our eight-stage process also offers a road map for quality PtDA development that incorporates IPDAS criteria and the ODSF while also highlighting the importance of stakeholder feedback and the iterative process of PtDA development.

The most important decisional need for hospice is simply to address the pervasive misconceptions and misunderstandings about hospice care. Much has been written about these barriers,^2–9,29 but little has been done to address them. The hospice-specific PtDAs developed here aims to minimize the impact of misinformation, facilitate communication, and improve SDM about hospice care. Our prior research showed that it was not until people had direct experience with hospice care that these misconceptions were dispelled.⁸ Individuals with direct experience of hospice felt hospice provided hope rather than feeling like they were giving up, and that all misconceptions about payments and potential benefits and risks of hospice were alleviated.^2–4,8 Further, there is some evidence that clinical discussions about hospice care are sometimes suboptimal, thus SDM interventions that provide standard information and facilitate improved conversations are needed.^29–32

In an effort to create a neutral and unbiased PtDA that did not oversell hospice as the best choice, we incorporated values clarification techniques in the PtDA. The use of values clarification methods is supported by the theoretical frameworks used to develop the PtDAs.²⁵ The addition of a page of values clarification questions in the PtDA is designed to help decision makers contemplate their end-of-life goals and their goals of care. There is a limited body of evidence that shows incorporating values clarification into PtDAs improves decision quality, especially in complex and difficult medical decision making.^33–35

Narratives can be used to normalize emotions and clarify values. Some evidence suggests people often base decisions on their assumptions of the worst possible outcome.²⁷ We use narratives to dispel some of the myths and misconceptions of hospice care through relaying actual patient experiences. However, patient narratives can be biasing and singularly persuasive to decision makers.^27,36 To avoid making a biased PtDA, we chose a range of relatively neutral narratives that focus on the services provided by hospice rather than emotional pleas for or against hospice care.

One area of the development that was surprising to our study team was the negative reactions to cultural tailoring. There is literature that cultural tailoring is effective in some health care settings,^37–40 but there is also evidence that tailoring is not effective and poses implementation challenges.^41–44 Alden et al. found that a culturally tailored PtDA did not prepare Hispanic women to make better informed decisions compared to a generic nontailored PtDA.⁴¹ Similarly, Frosch et al. found that a racially diverse sample of primary care patients was more likely to discuss medical decisions with their providers after reviewing a generic PtDA versus a tailored brochure.⁴³ These findings suggest that improved SDM is essential and, although cultural sensitivity is critically important, a better strategy may be training health care providers on communicating with diverse populations.⁴⁵ As we move forward studying this PtDA, the need for tailoring will be an ongoing question. We can see it being helpful and appropriate in some ways, and challenging in others.

This study has some important limitations. Recruitment for this study was predominantly from the University of Colorado Healthcare System. The single-center approach may limit the generalizability of the tool due to homogeneity of the sample. However, we were able to enroll a rather diverse sample of participants.⁸ Further, the hospice providers who participated represent four different hospices throughout the Denver Metro area.

Although we feel the process of development outlined in this article is rigorous, the fact remains that we have not tested these hospice PtDAs for their real-world effectiveness. Our prior work shows this to be an effective method for developing PtDAs that are generalizable across a large network of differing health care settings and scenarios.^34,35 Further, to our knowledge this is the only hospice-specific PtDA available to people facing end-of-life decision regardless of diagnosis. Our hope is that the hospice PtDA will have widespread adoptability and use.

Funding Information

This study was funded by grants 5R21AG059114-02 and 1R36AG064135-01 from the National Institutes of Health.

Author Disclosure Statement

No competing financial interests exist.