Feasibility of Discussing End-of-Life Care Goals with Inpatients Using a Structured, Conversational Approach: The Go Wish Card Game

Article Outline

• Abstract
• Introduction
• Methods
  • Design
  • Setting
  • Data Collection
  • Data Analysis
  • Research Ethics
• Results
• Discussion
• Conclusions
• Acknowledgments
• References
• Copyright

Abstract 

Establishing goals of care is important in advance care planning. However, such discussions require a significant time investment on the part of trained personnel and may be overwhelming for the patient. The Go Wish card game was designed to allow patients to consider the importance of common issues at the end of life in a nonconfrontational setting. By sorting through their values in private, patients may present to their provider ready to have a focused conversation about end-of-life care. We evaluated the feasibility of using the Go Wish card game with seriously ill patients in the hospital. Of 133 inpatients approached, 33 (25%) were able to complete the game. The “top 10” values were scored based on frequency and adjusted for rank. The value selected of highest importance by the most subjects was “to be free from pain.” Other highly ranked values concerned spirituality, maintaining a sense of self, symptom management, and establishing a strong relationship with health care professionals. Average time to review the patient's rank list after the patient sorted their values in private was 21.8 minutes (range: 6-45 minutes). The rankings from the Go Wish game are similar to those from other surveys of seriously ill patients. Our results suggest that it is feasible to use the Go Wish card game even in the chaotic inpatient setting to obtain an accurate portrayal of the patient's goals of care in a time-efficient manner.

Key Words: Advance care planning, end-of-life care, palliative medicine, Go Wish cards

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Introduction 

Eliciting patient's preferences is imperative to provide quality palliative and end-of-life care.¹ To arrive at conclusions about specific treatment preferences, patients and their providers should discuss expectations and the feasibility of certain options. However, it may be difficult for patients and providers alike to initiate the dialogue de novo. Patients may be unclear as to their priorities, may not know which issues could be important in their future medical care, or may be too emotionally fragile to engage in such a discussion. Providers also vary in their ability to initiate the dialogue and may not be conscious of how their own assumptions about a patient might influence the discussion. Many health care professionals also feel time constraints because such discussions are often lengthy and evolve over the course of several visits.

An easy-to-use, structured, conversational tool could prompt the patient to consider his or her priorities and relay such information to the provider, thereby enhancing the patient-provider conversation about end-of-life care. We conducted a pilot evaluation of the Go Wish card game, which was developed by the Coda Alliance (San Jose, CA) to be used as such a tool (www.gowish.org).² The card game consists of 35 cards, each one marked with a single value (e.g., “to be free from pain”) derived from research focused on goals and values endorsed by patients in late life³ and one additional “wild card” to which the patient could assign a unique value not described by the other cards. Patients are asked to place each card into one of three importance categories (“very important,” “somewhat important,” or “not important”) according to their personal preferences. The “top 10” values from the “very important” pile are then ranked in order of importance and transmitted to the patient's health care provider. The results serve as the basis for a focused discussion on end-of-life care goals.

Experience using the card game suggests it may be useful in promoting dialogue and identifying areas for intervention in select individuals.² However, this decision-making tool may not be acceptable to all patients. We approached patients on inpatient services to use the Go Wish game to evaluate the feasibility of implementing the game across a broad spectrum of seriously ill inpatients. In addition, we wished to gain insight into the values patients consider important in an acute medical care setting.

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Methods 

Design 

An observational study of proctored administration of the Go Wish cards was performed on inpatients at the VA Greater Los Angeles Healthcare System (VA GLAHS). The patients were surveyed before the intervention, and their rankings of goals and values were recorded after card game completion.

Setting 

The VA GLAHS is a tertiary care academic hospital that serves approximately 76,000 veterans in Los Angeles County. The facility has 143 medical and surgical beds with approximately 3,100 acute care admissions in fiscal year 2007.

Data Collection 

We recruited inpatients from the general medicine service, the rehabilitation service, and the transitional care unit, a step-down ward for veterans who require inpatient care while receiving ongoing treatments, such as chemotherapy, radiation therapy, wound care, and long-term intravenous antibiotics. Recruitment occurred between October 2006 and February 2008. Faculty and housestaff on these services were approached and asked to identify patients on their service at high risk for significant morbidity or mortality within the next year and whose goals of care should be clarified. Physicians were asked to refer such patients only if the patient also met the following criteria: 1) cognitively intact, 2) physically able to sort and read the deck of cards, 3) likely to be in the hospital for at least three or more days, 4) not participating in another research study, and 5) not in contact isolation.

Referrals were then approached and enrolled by a research assistant who explained the study and obtained informed consent. Participants completed an initial survey to ascertain basic clinical and demographic information. At the end of the survey, the patients were provided a Go Wish deck of cards. They were informed that the cards were marked with values some have considered important during times of serious illness. The patients were instructed to consider the importance of each value and place the cards into one of three categories: “very important,” “somewhat important,” or “not important.” They were also informed that there was a wild card, which they could assign any value that was not adequately addressed by the other 35 cards. The patients were then left with the deck of cards and informed that another member of the research team would return later in the day to follow up their ranking of the cards.

The second member of the research team would arrive later to review the patient's rankings and record any additional comments the patient provided. This member of the research team was either one of two physicians or a hospital clinical social worker. None of the research team members had formal training in end-of-life care beyond their daily clinical duties in the hospital. However, each member received brief instructions on using the Go Wish card game and reviewing each patient's response. At the end of the intervention, the patients were asked to rank and discuss their top 10 values in order of importance. The patient's preferences were recorded on a summary sheet, which was given to the patient and their physician. The patient was encouraged to discuss their preferences with family members, surrogates, and medical professionals.

Between October 2006 and February 2008, 133 patients were referred for the study by the housestaff and faculty on the inpatient services. Fifty patients refused to participate, and 16 patients were unable to participate because of medical issues that became apparent after referral, such as contact isolation, fatigue, cognitive deficits, visual acuity problems, or extensive medical procedures, which prevented study coordinators from locating the patient. Sixty-seven patients initially consented and received the presurvey. However, 13 patients later withdrew, or were discharged, and one patient expired before completing the intervention. Common reasons for withdrawal after the initial consent and presentation of the Go Wish cards included fatigue, emotional upset, prior clarification of their preferences, and inability to concentrate on sorting the cards. Twenty patients were randomized to receive a sham set of cards, which served as an attention control as part of a separate pilot project to evaluate effectiveness. This project did not accrue patients quickly enough to be able to report subtle comparative effects with available resources, and these 20 patients are not considered in this analysis, which addresses feasibility of implementation of the Go Wish cards. Ultimately, 33 (25%) patients completed the Go Wish card game and the presurvey.

Data Analysis 

Deidentified data were entered into a Microsoft Access® database on an ongoing basis. Data fields containing the patient's card selections were migrated into the Statistical Package for the Social Sciences (SPSS, SPSS Inc., Chicago, IL) for analysis, wherein unweighted frequencies calculations and weighted ranking scores were computed for each card. Additionally, demographic statistics were processed.

Research Ethics 

The data collection process and study documents were approved by the Institutional Review Board at the VA GLAHS.

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Results 

The demographic data of the patient population are presented in Table 1. The mean age of the participants was 62 years. The respondents were all male and predominantly Caucasian. The most common medical issues affecting the patients were cancer and heart disease, 24% and 21%, respectively. One patient noted more than one medical issue, and 14 patients did not identify with having any of the four major medical causes of morbidity and mortality. Despite the selection criteria, 14 patients (42%) felt they were in good to excellent health. Only 16 participants (48%) reported being in fair or poor health.

Table 1. Demographics of Veterans Who Received the Go Wish Card Game

Variable (n=33)	n (%)
Age
62 years±10.6 (range: 31–83)
Race
Caucasian	21 (64)
African American	10 (30)
Latino/Hispanic	2 (6)
Medical conditions
Cancer	8 (24)
Heart disease	7 (21)
Lung disease	3 (9)
Stroke/neurologic disease	2 (6)
None of the above	14 (42)
Education
Some high school	4 (12)
Graduated high school	6 (18)
Some college	11 (33)
Graduated college	5 (15)
Postcollege graduate	7 (21)
Household income 11K
None	2 (6)
0 < 10K	7 (21)
11–20K	8 (24)
21–30K	4 (12)
31–40K	3 (9)
41–50K	1 (3)
51–60K	1 (3)
>61K	2 (6)
Refused	5 (15)
Self-assessed overall health
Excellent	2 (6)
Very good	4 (12)
Good	8 (24)
Fair	7 (21)
Poor	9 (27)
No answer	3 (9)

Table 2 shows the values commonly identified as being in the top 10 weighted for their rank in the top 10 list. Each value was reviewed by three members of the research team and categorized as being, for the most part, either actionable by medical professionals (provider focused) or actionable by the patient (patient focused). There was a general agreement for all but seven of the values; these seven values were categorized by a two-thirds majority. All of the 36 cards appeared in at least one patient's top 10 list. The highest ranking value overall was “to be free from pain,” a provider-focused value. This value was chosen by 20 of 33 (60%) of the subjects and usually ranked high on the list. The second and third most frequently selected value when adjusted for rank concerned spirituality and faith: “to be at peace with God” and “to pray.” In contrast, “to meet with a clergy or chaplain” was ranked less often and selected by only three participants. Other commonly selected issues concerned maintaining a sense of self and personal dignity (“to be kept clean,” “to be mentally aware,” “to maintain my sense of humor,” and “not being a burden to my family”) as well as minimizing physical symptoms (“not being short of breath”). Having a trusted relationship with a doctor was frequently in the top 10 as well.

Table 2. Values Most Frequently Ranked as Being in the “Top 10,” Adjusted for Their Ranking in the “Top 10”

Note: Frequency denotes the number of number of times the value was ranked in the “top 10.” Weighted scores were derived from the summation of all ranked cards, wherein a patient who identifies a card as the most important item is assigned a weight of 10; the next most important card is assigned a weight of nine, and so on. The sum of these weighted scores is represented in the “Weight” column.

Values are categorized as mostly actionable either by a health care professional (provider focused) or by the patient (patient focused). To determine if a card was provider focused or patient focused, three members of the research team, consisting of two physicians and one hospital clinical social worker, individually determined if the item on the card was an issue that is most likely to be addressed by a medical provider (e.g., “to be free from pain”) or not (e.g., “to have my financial affairs in order”). Ratings of 1.00 indicate rating concurrence among all three reviewers, whereas a card with a score of 0.67 indicates concurrence among two of three providers.

There was variability among the 13 of 33 patients who did not select “to be free from pain” in their top 10 list. Four patients (31%) selected spiritual concerns as being the top priority, either “to be at peace with God” or “to pray.” Three patients (23%) selected “not being connected to machines.” The remaining six patients each selected different items that addressed a wide range of concerns.

Values that were ranked less often were focused on having friends and family members nearby during the dying process: “to have close friends near,” “to die at home,” and “not dying alone.” The wild card was identified by five subjects as being in the top 10. The values assigned to the wild card were variable and focused on personal issues, such as establishing contact with an estranged child or expressing concern about the welfare of a loved one.

The average discussion time with the intervener after the patients had sorted the cards in private was 21.8 minutes (±10.7 minutes). The range was six to 45 minutes. Some patients felt that the cards were helpful in identifying issues that had not previously been addressed. The patients' health care providers occasionally commented that the cards were helpful in addressing concerns that may be an issue in the future, but they were already aware of some of the patient's more acute medical needs (i.e., “to be free from pain”).

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Discussion 

The suitability of each patient's end-of-life care planning requires focus on both medical and personal issues. Having a productive dialogue with patients that encompasses such a wide range of topics requires time and training. Our study suggests that the Go Wish card game can be used as a decision-making tool by chronically ill inpatients to prompt consideration of their preferences across a wide range of issues. The game can serve as an initial step in clarifying goals of care and be implemented with minimal training and within a reasonable time period. However, acuity of illness and medical procedures can interfere with the utilization of the Go Wish cards just as they inhibit patient-provider communication in general in the inpatient setting.

Previous research had stressed the need for advance directives, which were focused on simple documentation of preferences for cardiopulmonary resuscitation. Subsequent studies have not demonstrated relevant outcomes. Advance directives completed in this manner have been difficult to interpret at times of medical crisis, resulting in overly aggressive medical care and underutilization of palliative care, spiritual support, and hospice.⁴, ⁵, ⁶

More recent research has emphasized the importance of eliciting patient's values and goals rather than patient's preferences for a particular life-sustaining treatment.¹, ⁷, ⁸, ⁹ Value-based discussions performed by trained providers with an interest in end-of-life care have demonstrated a reduction in the use of nonbeneficial treatments as well as fewer conflicts between patients and their surrogates.¹⁰, ¹¹, ¹² Because the Go Wish card game is focused on drawing out patient's beliefs and values, it may play a helpful role in facilitating end-of-life planning.

Other structured programs have had favorable results. The Respecting Choices® curriculum provides patient-centered advance care planning through a series of facilitated interviews. Such a comprehensive program has shown a reduction in decisional conflicts between patients and their surrogate decision makers.¹³, ¹⁴, ¹⁵ However, the program requires a trained nonphysician provider to administer a one- to two-hour interview and, therefore, may require a significant investment in resources if applied to a broad population. Furthermore, the program does not address some of the more personal issues that may be important at the end of life.

The Go Wish game allows patients to consider values across a broad range of topics that may not be instinctively important at first to the patient or the provider. The deck of cards is inexpensive and was completed by 33 of 133 (25%) of the patients approached despite their acuity of illness. The value considered most important when adjusted for frequency and rank in the top 10 was “to be free from pain,” an issue that could be addressed by a medical provider. The next most commonly selected values concerned spirituality and faith. Other issues that were considered important concerned symptom management, having a trusted physician, and maintaining personal dignity.

The 10 highest selected values were evenly split between provider-focused and patient-focused issues, suggesting that advance care planning, as well as medical care in general, should encompass issues that may not be actionable by medical providers but are of concern to the patient. The values ranked most important are consistent with surveys of seriously ill patients, which have shown that although pain management is often of highest priority, spiritual, financial, and interpersonal issues weigh heavily as well.³, ¹⁶ Although issues concerning spirituality and “not being connected to machines” ranked high for those patients who did not rank pain control as a top 10 concern, there was overall variability in the responses for these subjects. Such variations highlight the need for advance care planning that is tailored for each individual.

Because patients sorted through the card game in private, they were allowed ample time to reflect on their values in a nonstressful setting. Furthermore, having the patient consider his or her priorities beforehand may lead to a more effective dialogue about advance care planning while working within the time constraints of the medical provider. After the patient had reviewed and sorted the deck of cards in private, a member of the research team was able to review the responses and gain an initial sense of the patient's priorities in about 20 minutes. This is in contrast to other programs, which often require several hours of discussion and evaluation.

Our study has several limitations. First, potential participants were referred by housestaff or faculty. This may have underestimated the potential eligible patients on the wards because many studies have shown that physicians overestimate a patient's prognosis.¹⁷ However, by relying on such physician referrals, our results are more suggestive of how often the Go Wish tool may be considered in common practice. Second, our population consisted of male veterans and, therefore, the results may not be generalizable to all. Third, the interveners who reviewed the results of the game were not the patient's own health care professional and, therefore, could not incorporate the results of the intervention into the patient's care plan. However, the results of the rank list were conveyed to the patients' providers, and many commented that they gained further insight into the patients' concerns beyond the immediate need for hospitalization. Although the impact of the cards in influencing advance care planning will need to be evaluated, there are encouraging studies that suggest that patient's preferences have logical associations with certain intervention choices.¹⁸ Fourth, of the 133 patients approached, 50 patients refused to participate in the study. Although the participation rate was relatively low, the game was still accepted by a significant number of patients despite the busy inpatient environment. Participation may have been improved had the game been administered by a provider who was caring for the patient. The game is not limited to the inpatient environment, however, and may be more acceptable in the less chaotic outpatient setting. An online version of the card game was recently made available (www.gowish.org) and may broaden the acceptability of the cards.

Future research should include outpatients and involve surrogates to ensure that patient's wishes have been relayed to their potential decision makers. The decision-making tool should be compared with current standard practice in addressing end-of-life care in select patients and addressing patient satisfaction, communication, and concordance of care with stated goals. A larger study may also draw out individual variations or commonly linked values, thereby identifying a “fingerprint” for each person.

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Conclusions 

Our study suggests that implementation of the Go Wish card game is feasible on an inpatient service. The similarity of our patients' responses to other studies suggests that the card game accurately reflects a patient's priorities in an efficient manner. The game's structured design prompts the patient to consider a broad spectrum of topics, whereas its ease of use and low cost allow the game to be implemented across a broad population.

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Acknowledgments 

The authors thank the Coda Alliance, San Jose, CA (www.codaalliance.org) for permitting use and reproduction of the contents of the Go Wish cards. The original development and production of the Go Wish cards was supported by a grant from the Archstone Foundation and a community services grant from the Kaiser Foundation.

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