Go Wish card game—exploring end-of-life wishes of patients in oncology palliative care: a qualitative study

Introduction

Terminally ill cancer patients require holistic and multidimensional care. Palliative care (PC) is a comprehensive care model offered to individuals suffering from severe illnesses and aims to promote the quality of life of patients and their family caregivers (1-4). Among the methods that promote quality of life and care, discussing and remembering end-of-life (EOL) wishes for future care can contribute to decision-making about care and the promotion of a dignified death. Allowing patients to express their wishes and preferences for care in the process of dying promotes dignity and enables discussions and resolutions of pending issues (5-7).

The Go Wish card game (GWCG) consists of 36 cards developed by Coda Alliance. The GWCG is designed to facilitate conversations about EOL wishes and care preferences in simple language, allowing patients to express their preferences for care in the face of mortality (8-10). The GWCG, were translated into Brazilian Portuguese by the Brazilian Society of Geriatrics and Gerontology (11). A study using the GWCG demonstrated that the cards were useful and allowed for discussions about EOL wishes and care needs in the dying process. Patients reported a better understanding of the importance of documenting and discussing their preferences before they become unable to respond for themselves, relieving the burden from their family members or loved ones (10).

In Delgado-Guay’s study, 90% of patients agreed that the GWCG is easy to understand, 78% preferred using the GWCG to address EOL wish-talk, and 62% of patients reported that discussing EOL priorities was beneficial. Moreover, patients showed no worsening of anxiety scores measured before and after playing the GWCG (12).

Although there are already some studies in the literature regarding the use of GWCG in oncology patients, no study has specifically evaluated Brazilian oncology patients in PC. Our study aimed to investigate the most significant EOL desires among Brazilian cancer patients receiving PC. We present this article in accordance with the COREQ reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-23-381/rc) (13).

Methods

Study design

This is an exploratory, descriptive, qualitative study with Bardin’s content analysis (14) and is part of an overall larger study, a before-and-after clinical trial (15) [registered in the Brazilian Registry of Clinical Trials (REBEC) under the number RBR-75m3n33]. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study was approved by the Research Ethics Committee of Barretos Cancer Hospital (No. 5.142.509) and informed consent was obtained from all individual participants.

Study setting

Palliative Care Unit of the Barretos Cancer Hospital (with a specific unit for PC, with 62 inpatients). It has a multidisciplinary team with outpatient care, emergency care, clinical admission and home visits.

Participants

Eligible patients should be ≥18 years old; aware of cancer diagnosis in an incurable condition; Karnofsky performance scale (16,17) ≥30%; who wished to talk about their EOL wishes; with cognitive conditions to understand the GWCG proposal and its subsequent approaches. Patients with dementia or psychiatric diagnoses that hindered the adequate reflection and conduction of the research demands (such as depression, schizophrenia, bipolar affective disorder, and panic disorder); those in delirium; with limitations to communicate with the researcher (such as aphasia, dysarthria, and dysfunctional phonation due to disease or therapy); with diminished hearing acuity that hindered the adequate understanding of the questions were excluded.

Data collection

Data collection occurred from December 2021 to May 2022. The patients were recruited with the assistance of doctors and nurses from the Palliative Care Unit, where the researchers had direct contact with these professionals. Patients were interviewed face-to-face and completed sociodemographic and clinical information. Additionally, they were instructed to indicate their overall health status by selecting the option that best reflects their perception from the following scale: 1= very good, 2= good, 3= regular, 4= poor, 5= very poor.

An experienced researcher conducted the interviews in qualitative research (B.S.R.P., PhD, with over 15 years of experience in qualitative research) and a nurse with research experience (M.M.), both of whom had no link to providing patient care. Patients were invited to participate in the study by being oriented about the procedures and objectives of the GWCG. The presentation of the cards was performed with a brief reading of each card to clarify doubts about vocabulary and semantics. In the next step, the patient kept the cards and was oriented to reflect on each one, separating them in order of priority in envelopes such as “Very important” (green envelope), “More or less important” (yellow envelope) and “Not important” (red envelope).

The ten most important cards were further discussed between the patient and the researcher, and the entire dialogue was audio-recorded and transcribed in full. It is also noted that the interviews took place in a private and safe environment, primarily within the inpatient room. This level of detail in the data collection process helps to ensure transparency and rigor, analyzing different contributions of content, whether verbal or non-verbal, through a systematization of methods employed in data analysis.

Statistical analysis

Data were analyzed according to Bardin’s Theory (14), organized in pre-analysis, material exploration, treatment of results, inference and interpretation. The authors pre-established and named the study categories based on the 10 most frequently chosen cards by the patients and in this way analyzed the speeches related to these.

The transcripts were independently coded by two researchers (B.S.R.P. and M.M.).

At the end of the game with the GWCG, the patients were asked: “What did playing the cards mean to you?” The answers were also recorded and analyzed according to Bardin’s methodological description of analysis (14). Using the NVivo 11 Pro Software (QRS International Pty Ltd., Burlington, MA, USA), a word cloud was generated to interpret the participants’ narratives regarding this question. The word cloud strategy can provide meaningful analysis of qualitative data by providing interpretations through text size and color. The more times the word appears in the responses, the bigger its size. That is, it has a higher frequency (18,19).

Results

The patients were recruited with the assistance of doctors and nurses from the Palliative Care Unit, where the researchers had direct contact with these professionals. Out of the 268 identified patients, 15 fulfilled the eligibility criteria (Figure 1).

Figure 1 Participant inclusion flowchart. KPS, Karnofsky performance scale.

The 15 patients included in the study had a mean age of 48 years (range, 19–74 years). Most were female (n=10), married (n=10), with regular health self-perception (n=8), and Karnofsky performance scale between 30–50%. Ten patients were on standard oncological treatment concurrent with PC. The average interview time was 33 minutes. The average time between the GWCG and patient death was 50.3 days, ranging from 10 to 100 days.

Choice of the most important cards

Table 1 shows the frequency of patients’ card selections that met the criteria of being categorized as ‘very important’. Among these choices, Card 19, which states ‘I want my family and friends close to me’, was the most frequently chosen option, with a total of 14 patients.

Category 1: I want my family and friends close to me (Card 19)

This category highlights the importance of patients’ relationships with their loved ones. The patients’ speeches revealed that family means love, dedication, strength, warmth, peace, calm and other feelings that emphasize the importance of the family context. Thus, the presence of family and friends denotes support and is necessary especially in EOL care.

“...in my last days I want my family and my true friends close to me...They are too important, they are everything...it strengthens me, it gives me hope to know that someone cares for me, who fights with me, who wants me to stay here and who is there at any time...giving me coziness, calm, peace... I don’t need anything else if I have that.” (Patient 14).

“… They are everything to me, I always want to have my family close by, that alone would be enough...they are the ones who give me strength...I want these people to be around until the end...Family is everything... Family is sacred.” (Patient 15).

Category 2: I want a doctor I trust and caring nurses (Card 4)

Patients recognized the importance of having healthcare professionals they trust, including doctors and nurses, who can provide compassionate care and effectively manage their symptoms. Trust in healthcare professionals is crucial in the EOL process as patients rely on their expertise, knowledge, and compassion to alleviate suffering and provide comfort. This category highlights the significance of effective symptom management and the critical role of healthcare professionals in providing compassionate care and support during the EOL journey for both patients and their family caregivers.

“I believe it would be better in the hospital, the doctor would be there to give support, it would be better...I don’t wish to die at home...to die we die anywhere, I just want to be well assisted...in a health institution you have this support, sedation, this relief...support for my son to organize the cremation which is very important to me.” (Patient 10).

Patients reinforced the importance of the doctor and nurse during EOL care.

“... the nurses, doctors, who care for us who are very ill, everything is very different from how I was cared for ... so this here for me is a wealth ... I thank them all ... I like it here very much (referring to the palliative care unit) ... Ah, I’m happy ...I feel safe and confident here”. (Patient 5).

Category 3: I want my family to respect my wishes (Card 16)

The EOL process is often challenging for individuals, particularly in countries where death remains a taboo subject and discussions about EOL wishes encounter various barriers. Consequently, situations can arise where patients may not express their desires, and family members may struggle to accept their loved ones’ choices. This category emphasizes the significance of effective communication and underscores the importance of honoring patients’ wishes by their families throughout the EOL journey.

“I want that” and let no one do otherwise, and fight against it so that my wish doesn’t happen.... Those are the wishes of my life and especially my end of life.” (Patient 1).

Respecting the wishes was a much-discussed subject by the patients, which allowed them to talk more about their wishes and desires in a more relaxed and calm way.

“...It’s that thing of respecting the course of my treatment, whatever I decide, if I want to continue or not, choosing where I’m going to be, if it’s a case of turning off a machine that’s just for me to have a living status...” (Patient 13).

Category 4: I want to be able to help other people (Card 24)

Helping others was essential for nine patients. This card brought the patients the feeling of retribution, of giving back all the care received while getting sick or helping others accept the fragile condition in which they find themselves by generously providing a friendly word.

“I feel like it’s something I could do, I’ve always talked to people and I’ve always tried to get those people to see the bright side of what’s going on...is it hard? .... how are you going to see the good side in a disease that is killing you?... I already accepted death, I wanted them to learn to accept it too.” (Patient 2).

“To help people in the way of being, for example...to show what I experienced, how I deal with it...I never questioned God because I went through it...and I wanted to show that to people” (Patient 13).

Category 5: I want relief from pain and shortness of breath (Card 35)

For eight patients in this study, ensuring effective control of symptoms such as pain and shortness of breath during the EOL period is of utmost importance, thus providing a dignified and comfortable death without unnecessary suffering.

“I don’t want this suffering at the end of life, I want to go away in peace” (Patient 9).

“When I am dying, I don’t want to feel pain or shortness of breath...I don’t want to suffer.... I know how I want to die...I want to close my eye and it’s over...I want to die in peace.” (Patient 11).

Category 6: I have special wishes (Card 36)

Eight patients in this study expressed having special wishes that were deeply personal and held significant meaning for them. These wishes included being cured from their illness, regaining their health, being free from the disease, having more time to spend with their families, taking a memorable trip with their loved ones, being cremated, and even simple things that may be taken for granted by many, such as traveling by plane. These wishes were moments of reflection for the patients, and some even cried when thinking about them. This category highlights the importance of acknowledging and respecting the unique wishes and desires of patients during the EOL process.

“I would like to live many things, but there was no time and they were left behind. My family and I had nice moments, good moments, but we didn’t have that moment when you say: ‘wow, what a wonderful moment’... I believe that I never provided a really happy moment, which they could remember for the rest of their lives.” (Patient 1).

“...I want to be cremated...that is my will...I don’t want ritual, you don’t need any of that...and I also want the world to know, to whom it may concern, that I was happy because I had my son, my son was my happiness...” (Patient 10).

“… My special wish is to attend my daughter’s 15th birthday party... perhaps I won’t be here anymore at her wedding (tearfully), so I would like to be present at her 15th birthday celebration... she will be dressed as a debutante, like a beautiful bride.” (Patient 11).

“It’s a dream I’ve always had, I’ve never traveled by plane and I would like to travel with my husband somewhere but just to travel by plane really...I think I’m going to die and I haven’t traveled by plane (laughs)” (Patient 12).

Category 7: I want a peaceful and dignified environment (Card 1)

Patients expressed their preferences for the environment in which they would like to spend their final moments, whether it be a specific place such as a hospital or their own home. They described how they envisioned this environment to be, with the aim of feeling at peace and maintaining their dignity.

“That for me is one of the most important cards, if not the most important .... Because I always wanted to be in a calmer, more pleasant environment...I believe that otherwise you can’t cope, you can’t think, you can’t reason, you can’t have that moment with God...” (Patient 1).

“...A calm and pleasant environment is my home, no fighting and no arguing, calm.... I didn’t want to die in the hospital...I want to die at home to be with my family...and in the hospital it ends up not being that way ... My home is the best environment for me” (Patient 11).

“I think that the place where I am, here (hospital), is already a calm and pleasant environment ... that’s what I deduced when I thought of this card ...” (Patient 15).

Category 8: I want to be able to say: Thank you, I love you, I’m sorry, Good-bye (Card 22)

Some feelings were reported frequently during the interviews, with gratitude being the most prominent emotion expressed by the patients.

“...I always thank God and the people around me, you for example...I thank you for all this, I thank you for what I go through, the difficulties, I thank you for the weaknesses because everyone has them, I have a lot of gratitude ...” (Patient 9).

“...it’s something I thought I would leave for everyone, my last post on my social network (laughs)...to say to everyone ...I want to ask for forgiveness ... thank you, my forgiveness for anything I have done, I love you ... and goodbye ...” (Patient 10).

Category 9: I do not wish to be sustained by machines if my death is imminent (Card 3)

Five patients in the study considered Card 3 as very important, indicating their preference to not be kept alive by machines if their death is imminent, in order to minimize suffering for both the patient and their family caregivers.

“The family suffers a lot when the patient is kept alive by machine...because I myself will already be practically on the deathbed and they will be hopeful, but they have no hope...” (Patient 8).

“...I think that cancer has an evolution, it is incurable in my case, and there will come a time when they will only keep me alive and I do not want this...I prefer sedation, without suffering, without pain and agony...but with sedation that I can stay calm and go away...Death is a certainty, there is nothing more that medicine can do, there is no way to reverse the case... It is postponing suffering for me and my family, and I don’t want to be a burden to my family” (Patient 10).

“I think it is an unnecessary suffering, you are already going to die and stay there keeping a body, it is a suffering for those who stay...” (Patient 13).

Category 10: I wish to maintain my dignity (Card 12)

Preserving dignity during the dying process was an important consideration for five patients in the study. This included feeling whole, clean, comfortable, and free from pain. Patients also described the desire to be “honest to the last breath” and to maintain their sense of self-being. Card 12 was chosen by these patients as indicative of their wish to preserve their dignity as they approach the end of life.

“...it’s very important...dignity is everything in a person’s life, it has to be dignified.... clean, comfortable, no pain...” (Patient 7).

“...I want to stay whole, honest, correct until my last breath because that’s how I feel really dignified.” (Patient 14).

“What did playing the cards mean to you?”

This question was asked to each patient at the end of the GWCG. One of the 15 patients reported initially not liking playing the cards because it brought back difficult and painful memories of facing mortality. However, the process was crucial for reflecting on the EOL journey. In this study, the GWCG was effective in fulfilling 90% of the patients’ wishes, and this was only possible with the support of the researchers, members of the interdisciplinary team, and patients’ families. The most important wishes, among the ten cards chosen as very important for each patient, were discussed with the interdisciplinary team of the Palliative Care Unit, and we endeavored to fulfill them. Only two patients requested the recording of advance directives in the medical record. However, some wishes, such as going on an airplane or visiting a beautiful farm, were not possible due to the patient’s EOL clinical condition.

“... it was a very, very, very... enlightening game... I think everyone should play, if I had known before... I would have played before, but at this time going through what I’m going through, this is the right time to play, everyone should play.” (Patient 1, died 100 days after GWCG).

“It was good, it defined things...it was cool, I got to define things that I hadn’t thought of, that mattered...” (Patient 9, died 83 days after GWCG).

“... it was very good ... selecting the cards was like making my advance directive ... it was a great relief to play the cards, it helped me in organizing my desires.” (Patient 10, died 12 days after GWCG).

“... it brought moments of reflection ... made me reflect more about life, about what’s to come ... and it may not even be coming anytime soon ... but it’s good to reflect on that kind of conversation ... I liked it a lot. I felt lighter ... It left me at peace.” (Patient 13, died 40 days after GWCG).

A word cloud was created using the main terms described by the patients regarding the meaning of playing with GWCG (Figure 2).

Figure 2 Word cloud about the meaning of the Go Wish card game for the patients.

Discussion

During the intervention with the cards, it was evident that patients had a strong need to talk about their EOL wishes, and how meaningful this opportunity was for them. Brazil, a western country, has a culture that still has many barriers and stigmas to talking about death (20). Conversations about EOL and related topics, including death, are often considered taboo in Brazil, which is a western country with cultural barriers and stigmas around discussing death (21). This cultural context has directly impacted the care process for patients in advanced stages of illness who are progressing towards death. Family caregivers also face challenges in discussing EOL care, which may have influenced the non-participation of patients in this study. Additionally, the ongoing COVID-19 pandemic posed difficulties in recruiting patients, as they were referred late to PC due to their clinical status deteriorating to delirium or cognitive impairment, and experiencing uncontrolled symptoms and significant suffering (22,23).

The utilization of GWCG in PC clinical practice holds the potential to overcome the resistance commonly observed among patients and their family caregivers when discussing EOL matters (24,25). A study examining the impact and dissemination of GWCG in the community revealed that these cards served as an effective “ice breaker”, facilitating conversations about end of life and positively influencing individuals’ capacity to address death-related issues within various social contexts (26). Engaging in discussions about EOL wishes using GWCG can prove to be a valuable and advantageous approach for patients, as it fosters open dialogues about emotions and preferences while emphasizing the significance of articulating and documenting care preferences in advance. This approach has the potential to enhance the provision of comprehensive and compassionate care throughout the dying process (10). EOL care conversations have demonstrated significant benefits in improving the quality of EOL care (27). One workshop demonstrated that using GWCG was effective in motivating Japanese who may have difficulty talking about their EOL wishes or making autonomous decisions. The game may encourage them to participate more actively in Advance Care Planning (ACP) and lead them to consider their future preferences regarding medical care (28).

The applicability of the GWCGs extends beyond individual patient encounters. They can also be utilized in group settings, educational workshops, and community outreach programs to foster a broader understanding of EOL care and encourage proactive discussions about ACP. It can enhance patient-centered care, promote shared decision-making, and ultimately contribute to the provision of compassionate and person-centered EOL care (29). Statement cards can assist PC patients in expressing important EOL aspects that may be difficult to articulate. These cards provide prompts and structure, enabling patients to communicate their thoughts, desires, and concerns more effectively (3). In our study, one participant mentioned that organizing the GWCG cards helped him with his advance directives. The cards aided in organizing his wishes and facilitated the definition of his choices.

Card 19, “I want my family and friends close to me”, was the most frequently chosen card by patients, highlighting the importance of affective relationships in the EOL process. Patients value the presence of family and friends, as these bonds provide comfort and peace during this time. These findings are consistent with a previous American study, where the same card ranked third among the most chosen cards considered very important by patients (12).

The card “I want a doctor I trust and caring nurses” was also among the most chosen cards in the aforementioned American study (12), as well as in the present study, underscoring the significance of the relationships established with the healthcare team as valued by patients. The technical support provided by healthcare professionals plays a crucial role in symptom management and relief of suffering, thus contributing to the promotion of a dignified death. Participants express a sense of security and trust in the healthcare team, believing that they would receive adequate assistance at the EOL, not only in terms of managing intense symptoms but also addressing emotional concerns (30,31).

The “I have Special Wishes” card highlights the possibility of exploring wishes that may not be explicitly addressed in the standard cards. Notably, the most common special wish expressed by patients was related to being cured or recovering from their illness. The card game held significant meaning for patients, as it provided a unique opportunity for them to engage in conversations, reflect on their lives, evaluate their priorities, and make decisions about their most important EOL wishes. As one patient shared, “It brought moments of reflection... made me think more about life, about the future... even if it may not be coming anytime soon.”

In our study we prioritized not only identifying but also fulfilling the most important wishes of the patients. We believe that it is essential to enable the inclusion of this practice in the daily routine of PC, where the GWCG can be a useful tool in the more humanized and person-centered care. The patients in this study expressed that the cards and choosing cards were helpful in facilitating the process of putting thoughts, feelings, and memories into words. The more directed conversations sparked memories and brought insights that helped patients understand what was most important. For some, taking the time to choose cards made it easier to think, decide, and talk about difficult issues. Although the conversations evoked feelings of sadness, they were considered to be valuable, prioritization moments, and the patients expressed their gratitude.

The findings of the content analysis of patients’ narratives highlight the potential value of GWCG as a valuable tool in clinical practice for PC. The game’s simplicity and ease of use facilitate patients’ ability to openly discuss their thoughts about EOL, express their core wishes and preferences, and promote a more individualized and specialized approach to PC. The GWCG’s quick applicability makes it feasible to incorporate into busy clinical settings, allowing healthcare professionals to efficiently integrate it into their practice. Its potential as a communication tool in PC can help clinicians gain valuable insights into patients’ perspectives, promote shared decision-making, and enhance patient-centered care (32).

The current set of statements on the cards contributes to the advancement of meaningful outcomes for patients with PC needs. However, further research is needed to encompass diverse patient populations, care trajectories, and cultural contexts in order to explore the full spectrum of care goals for patients in the EOL. Additional studies can delve into the conversational processes that address immediate needs and investigate the potential evolution of wishes and priorities over time. This comprehensive approach will enhance our understanding of EOL care and facilitate the development of tailored interventions to meet the unique needs of patients in PC.

This study has some limitations. First, it was difficult for patients to participate in all stages of the study due to clinical worsening associated with reduced consciousness and delirium. Second, the ideal would have been to include in the study patients who were admitted early in PC, with more favourable clinical conditions, and that favoured the game with the cards. However, the delay in the referral of these patients to PCs due to the pandemic of COVID-19 was a limiting factor.

Conclusions

The use of the GWCG in the oncology PC setting made an important contribution to open discussions about patients’ values and preferences, as well as being an easy-to-use, understandable, and flexible tool. Among the 36 cards, the card “I want my family and friends close to me” was the one chosen most often by patients, highlighting the importance that family and friendship relationships throughout life can also be highlighted in the EOL process. Prioritizing the fulfillment of patients’ wishes was one of the main strengths of this study. Our study suggests working with these wishes as a framework for person-centered care.

Acknowledgments

We want to thank the Research Group on Palliative Care and Health-Related Quality of Life (GPQual), Barretos Cancer Hospital.

Funding: This study was supported by the individual MSc’s degree scholarship from the CAPES (to M.M., CAPES grant number 88887.596036/2020-00). This study was supported by the individual Research Productivity Fellow Level 2 from the CNPq (to B.S.R.P., CNPq grant number 313601/2021-6).

Footnote

Reporting Checklist: The authors have completed the COREQ reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-23-381/rc

Data Sharing Statement: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-381/dss

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-381/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-381/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study was approved by the Research Ethics Committee of Barretos Cancer Hospital (No. 5.142.509) and informed consent was obtained from all individual participants.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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