“You Can Rest Knowing That We Know What You Want”—Longitudinal Advance Care Planning Discussions With Young Adults Receiving Hematopoietic Stem Cell Transplantation

ABSTRACT

Objective

Young adults (YAs) undergoing hematopoietic stem cell transplantation (HSCT) often face significant transplant‐related morbidity and mortality. Advance care planning (ACP) discussions can provide YAs with the opportunity to address treatment goals and care preferences with their family members and healthcare team. However, such discussions often do not occur until YAs are critically ill or at the end of life. This pilot study aimed to examine the usefulness of a series of planned ACP discussions during transplantation and their impact on dyadic (patient‐caregiver) relationships.

Methods

Qualitative, semi‐structured interviews were conducted with YAs, aged 18–39 years, and caregivers following completion of three ACP conversations, one of which used the Voicing My CHOiCES communication guide. Data were analyzed using a reflexive thematic approach.

Results

Thirty‐two interviews were conducted with 19 YAs and 13 caregivers of 21 YAs undergoing HSCT. Two main themes emerged: navigating uncertainty while facing potential mortality and reducing decisional regret. Having ACP conversations helped YAs communicate with their caregivers, often for the first time, about their preferences for care if they became seriously ill. This improved communication also often led to a sense of empowerment in knowing one another's preferences. Enhanced communication was reported to strengthen dyadic relationships.

Conclusion

Age‐appropriate ACP conversations allowed YAs to express their preferences for care and provided an opportunity to address possible discrepancies with their caregivers. Such conversations can help to decrease stress, empower YAs and their caregivers, and potentially reduce decisional regret through a shared understanding of the YA's voice.

1. Background

Adolescents and young adults (AYAs), defined as the population aged 15–39 years [1], who face life‐limiting or threatening illnesses, are a highly vulnerable population, as they must navigate between pediatric and adult care. AYAs have a unique set of needs and preferences, particularly the management of psychosocial symptoms and mental health as key components of their wellbeing [2, 3, 4].

AYAs undergoing hematopoietic stem cell transplantation (HSCT) face the additional challenges of poorer psychosocial and physical outcomes, namely lower 5‐year survival rates and greater transplant‐related mortality compared to other patient groups [5, 6, 7, 8]. Considering the developmental needs and multiple risks that AYAs may experience throughout transplant, access to open and early communication about their preferences for treatment, care, and possible death is critically important.

Advance care planning (ACP) as a process [9] is an extension of discussions about treatment outcomes and future care. The purpose of ACP, a key component of palliative care, is to give patients and families an opportunity to identify what matters most based on their personal values and wishes in the context of their medical situation, expanding beyond the physical domain and including psychosocial and spiritual‐existential spheres [10, 11]. When engaging in ACP, including caregivers in dyadic conversations may have additional benefits as it can ensure that the patients preferences are heard [12] and empower caregivers to support communication between AYAs and healthcare providers [13]. Family centered pediatric and AYA ACP interventions have been demonstrated to improve caregiver's appraisal of themselves as a caregiver [14]. Discussions about prognosis and care preferences prior to and during treatment can also help alleviate possible decisional regret in caregivers [15]. When implemented early, ACP discussions can help to psychologically prepare AYAs and their caregivers for end‐of‐life [9, 15, 16]. Recognizing the patient‐caregiver dyad as a unit of care can further reduce emotional distress [17] and allow patients and caregivers to talk about difficult decisions, they might not otherwise discuss [18]. This can be particularly important in situations where the culture of a patient and their family members may hinder end‐of‐life discussions [19].

A previous review of ACP documentation among AYAs undergoing HSCT found ACP discussions most often occur at the end‐of‐life and not as a general practice [20]. Known barriers to (early) ACP discussions are healthcare providers' lack of training and discomfort in conducting a family conference addressing these issues [21, 22]. Research remains scarce on how longitudinal ACP discussions with patients and their caregivers affect psychosocial and communication outcomes for AYAs. Recent studies have shown that different ACP interventions in AYAs may both increase [23] or decrease [24] anxiety. We conducted a rigorous qualitative analysis to better understand (1) if and how longitudinal ACP discussions impact AYAs in expressing their care preferences to their caregivers and medical providers, especially when preparing for HSCT, and (2) whether ACP discussions impact the dyadic (patient‐caregiver) relationship.

2. Methods

The data for this publication were collected from qualitative interviews conducted as the final stage of the Longitudinal Early Advance Care Planning Discussions and Documentation (LEADD) study at the National Cancer Institute at the National Institute of Health (NIH) in Bethesda, Maryland, USA. The research was approved by the Institutional Review Board of the National Institutes of Health, and we report methods and findings in accordance with the COnsolidated Criteria for REporting Qualitative Research (COREQ) checklist (Supporting Information S1).

2.1. Participant Inclusion Criteria and Recruitment

Eligible participants were young adults (YAs) between the ages of 18–39 years who underwent HSCT at the NIH Clinical Center and their caregivers. Caregivers could be family members (e.g., parent, spouse, cousin) or other close individuals (e.g., romantic partner or platonic friend) of the YAs. We chose to enroll YA participants above 18 years (and therefore categorized as YAs, not AYAs) as transplant recipients are the primary focus of this study and this would not require the consent of a caregiver to participate. There were no exclusion criteria to YAs (dis)abilities. Inclusion required participants to be fluent in English.

Eligible YAs were approached by the study team and if interested in study participation, they provided written informed consent. If YAs provided permission to approach a caregiver of their choosing to participate as a dyad, caregivers were subsequently approached and signed informed consent if they agreed to participate.

2.2. Data Collection

The data used for this manuscript consist of semi‐structured interviews conducted following the completion of three ACP conversations: before, during, and after HSCT (Figure 1). YAs were divided into two cohorts (A and B): cohort A were those whose caregivers (partners or parents) also participated, and cohort B were YAs participating alone.

FIGURE 1.

Timepoints of the LEADD study.

Time point 1 (between baseline and day + 45 after HSCT) of the LEADD study consisted of participants being guided through conversations by a research interventionalist utilizing a modified version of the publicly available Serious Illness Conversation Guide [25]. This conversation explored the YA's and caregiver's understanding of the YA's illness and treatment plan, information preferences, goals, sources of support, fears and worries, and preferences for support.

At time point 2 (2–4 weeks after time point 1), participants were given the opportunity to revisit the previous conversation or any topics of their choosing. This was followed by a discussion centered on select pages of the ACP document, Voicing My CHOiCES (VMC). Cohort A YAs completed 3 pre‐selected pages of the document as though the document was for the caregiver within the dyad, while the caregiver completed the same pages based on their impression of the YA's preferences. Participants and their caregivers were then guided through a discussion of this experience and given an opportunity to compare their perceptions of one another's preferences and share their own preferences with each other. Participants in cohort B completed 3 pre‐selected pages of the Voicing My CHOiCES document regarding their own preferences.

There was a follow‐up conversation at time point 3 (approximately 2–4 weeks after time point 2) when participants had an opportunity to discuss previous conversations or any new ACP topics if desired. YAs were provided with a summary document of their preferences as discussed during the course of the study to keep and consider sharing with caregiver(s), healthcare provider(s), or other important people in their lives.

Semi‐structured qualitative interviews to assess participants' impressions of the LEADD study took place online, by phone or in the clinic approximately 1 week after time point 3. The interviews were conducted by a female or male study team member (L.W., S.S.; B.P., J.H.) not involved in the previous conversations of the study. All interviews took place once, were audio recorded, and professionally transcribed. At the beginning of each interview the interventionalist introduced the interview topic, followed by a general question, then asked both in‐depth and factual questions, and finished with an expression of gratitude. The semi‐structured interview guide (Supporting Information S2) was developed by a multidisciplinary team of clinicians and researchers with expertise in qualitative research, palliative care, transplantation, and psychology. The research team conducted an extensive review of existing literature to inform the first iteration of the interview guide, with subsequent revisions informed by feedback from qualitative research experts to strengthen the language, content, and organization of the guide. Data collection took place from January 2023 to March 2025.

2.3. Data Analysis

The data was analyzed using a reflexive thematic analysis approach [26, 27]. For a rigorous analysis, there are six steps to consider in reflexive thematic analysis [26, 27, 28]. For this publication, we applied these six steps as follows: (1) to familiarize themselves with the data, the researchers re‐listened to all audio recordings and took handwritten notes on each interview. After this initial familiarization, the preliminary notes of the interviews were then compared among each other and organized into handwritten mind maps, structured according to the topics of the interview guide. After transcription of the audio data, all interviews were entered into a MAXQDA project to (2) generate initial codes. To (3) generate themes, the researchers together discussed initial codes, looking for the relationship between themes and codes. (4) To review potential themes, the themes, sub‐themes and codes were compiled into a code dictionary by AKV, which was reviewed by DC and PK to check for agreement. In case of discrepancies, LW was involved to find consensus. The themes were then further defined and named (5) and discussed in meetings among the researchers. As a final step, (6) the report was written, including exemplary, anonymized quotes of the interviews. While this is presented as a linear approach, there was iterative revisiting of each step to engage, compare, and reflect on the data [27, 28]. Data saturation was not sought for, as this is not typically done for reflexive thematic analysis [29]. However, the predetermined goal of including 20 YAs was achieved.

3. Results

Thirty‐two interviews were conducted with 19 of the 21 YAs undergoing HSCT and 13 of the 15 caregivers enrolled at baseline. Two of the YAs participated in time point 1–3 but were unable to participate in the interview due to their physical status (intubation/non‐verbal). Two of the caregivers also did not participate in the interview (one did not complete all time points, one lost to follow‐up). Interviews lasted on average 21 min. Additional demographic information on the participants can be found in Table 1.

TABLE 1.

Young adults' and caregivers' LEADD study baseline demographic characteristics.

	YAs (n = 21)	Caregivers (n = 15) a
Age in years
Age, median (range)	28 (18–38)	52 (28–63)
Sex, n
Female	10	13
Male	11	2
Race, n
White/caucasian	10	9
Black/african‐american	5	4
Asian	2	2
Multiracial/Biracial	1	0
Other: Latinx	1	0
Did not indicate	2	0
Relationship status, n
Married or partnered	7	11
Divorced/separated/widowed	1	2
Single	13	2
Indication for HSCT, n
Malignancy (ALL)	5
Non‐malignant immunodeficiency and genetic syndromes (CGD, SCID, XLA, DOCK8, SCD, GATA2, CAEBV/HLH)	16

Abbreviations: CAEBV/HLH, chronic active epstein‐barr virus/hemophagocytic lymphohistiocytosis; CGD, chronic granulomatous disease; DOCK8, DOCK8 deficiency; GATA2, GATA2 deficiency; SCD, sickle cell disease; SCID, severe combined immunodeficiency; XLA, X‐linked agammaglobulinemia.

^a Of the 15 caregivers participating at baseline, one caregiver returned home soon after completing the first interview, and one was lost to follow‐up and did not participate in the qualitative interview.

Analysis of the interviews presented two main emerging themes: navigating uncertainty while facing potential mortality (Table 2) and reducing decisional regret (Table 3).

TABLE 2.

Navigating uncertainty while facing potential mortality; exemplary quotes.

Being prepared	Caregiver: “I thought it was something good to think about. It was/instead of like I was saying it is not good to put the head in the sand and think nothing can happen, I knew this—nothing could happen—I knew that. But I realized it could go either way. That is the time I realized, it could go either way. Yeah. So it made me know that it is good to be prepared sometimes mentally. It prepared me, that is what I can say [chuckles]. It was like a preparation for everything”
	Caregiver: “I think the topic and the conversation is important because when it comes down to it, you're generally not in the mode to be able to have that conversation. Pre‐planning is/planning at all is important. I think for him [son], as a young adult, just like I hammer into his head for every time you make money, you need to pay your savings before you pay anything. Then you pay your bills and then you plan ahead, right? You plan ahead for home purchase, you plan ahead for retirement. When you get to those landmarks, you'll be prepared. This falls in line with that, which is just being prepared for good things and bad things.”
	Caregiver: “Our child has always expressed his desire to survive and to have a longer life. But his answers and during the study, almost there is a beacon in the horizon with a blinking light. This almost amplified it and almost certain reminded: this is what I want, this is what I stated that I wanted. If there are any bad days that I am having/it served like a reminder, a beacon, a light to remind, this its what/our child is on the ship that is out on the ocean, all over the place and storms. But there is always that goal in our child's mind on what he wanted.”
Timing issues with ACP	YA: “I guess it's good to have, but at the right time, like I said, because say if I was really sick and was talking about death and stuff like that, that wasn't probably the best timing, so it is, but at the right time.”
Voicing care preferences	YA: “It was just things that I hadn't really necessarily thought deeply about before or not even/just being able to say it out loud, I guess, and have someone probe questions and stuff. I thought it was helpful to just get these thoughts to the front of my mind, I guess.”
	YA: “It surprised me how much I felt like it was more about helping me articulate my choices and understand my own desires and my own needs as a patient, which was a very pleasant surprise. I was very happy that was the case. I got a lot more value out of it than I even expected to”
	YA: “Yes, I appreciated that conversation because, for some reason, I just always assume people know what is in my head, but to have that down with people as like, “Oh, you know what? This is actually what I want”, that was helpful.”
Changes in preferences when undergoing treatment	YA: “For example, before, I thought I would want to be listening to music all the time, and I thought that I would want to have some sort of distraction, but in reality, when I was in the thick of it, when I was really feeling ill with mucositis, I didn't want any sound around me. I wanted no stimuli. I wanted just to be quiet and to close my eyes and rest. Although that's not what I wrote down for my preferences in the study, having thought about that gave me the tools and the skill set to articulate that properly to the people around me, the people who could make that happen for me.”
Taboo topic	YA: “Yes, I would. I think it is the best option because a lot of us sickle‐cell patients come from similar countries, and it's a custom in our countries to be/Don't really talk about the bad stuff. It's very taboo to express like let's say if you fear death, yes, that's normal, but God's with you. Or you try to brush off your emotions, your fears and your worries about your health and say, “Pray” or “Lean on God”. You can't really do that if you don't feel stable yourself. You can't really lean on your faith if your mental state is shaky. I think it allows both the parent or the caretaker and the patient to express and to understand the other. If in the beginning, we each have our own where we answer ourselves, and then we swap the books so then the caretaker can see what the patient's answers are, then they have the time to go look on, this is what they want. This is what they truly want. This is what scares them, or this is what motivates them. Now they know how to help through transplant. It's not just the same of, “God's with you”. They need someone physically there to be like, “I understand what you want now. I can help you more”.”
	Caregiver: “From where I come from, I am from/what I know, it's like a taboo what I was telling you. Cause like a taboo, I kept it closed/I kept it at the back of my mind, I don't want to think of that. There is no time of thinking of such things.”
Impact on patient‐caregiver relationship	Caregiver: “What surprised me. I think the/our bond with my daughter became better. We could understand each other. Before maybe I could not but I think that was a surprise to me and she could now tell me some things she could not tell me before. So, I think that was a surprise I got [chuckles]. mm I became a better person. I can improve how I relate with others now.”
	YA: “We do understand each other's, either their emotion, their thoughts, their choice and what they used to do. Most of our answer about the other one are correct. Just when it comes to a little deeper question, say, about something after death, if you wish to donate your organs, it has been said previously that we have different ideas about each other. Overall, I think we know each other too much, so yes, no difficulties between us. […] Since that we know each other so well, other than few questions that we have different opinion with each other, the others doesn't change much about how we see each other”
	YA: “If anything, it strengthened my relationship. Like I said, we were already on the same page. I think it was good to confirm that both of us knew what each of our wishes would be, especially for her knowing what my wishes would be if I got sick, instead of if I was to get sick and then all of a sudden we're scrambling, trying to make sure we know what I would want because without this whole thing, we would just randomly talk about it but not actually go into detail.”
Knowing how well the YA and caregiver dyad understands each other	YA: “I guess with the/when I actually was talking, or when I did the thing for my dad, I didn't really expect us to be pretty much 100% accurate for each other. I guess that was a surprise.”
	YA: “Of course, it's very necessary to have these conversations and. I felt like it was. It was a good thing for us. To do this, and also it was comforting knowing how much my mom and I knew each other and that we would get it right.”
Hard but important conversation	Caregiver: “It was a very hard conversation because I was writing and thinking about things that he liked, and some of the things I didn't remember because we talked about some of that things. Yes, it was hard, but right now, in this situation, I think it was the best thing to do because I know in my head what he wants.”
	YA: “Most people avoid this talk because it's either way too hard emotionally or they don't know even it's a possibility depending on the socioeconomic level of the patient. I think it's very valuable research. I think it touches points or scenarios that are really necessary to have or conversations they need to have beforehand. It also helps you understand where you're standing from a patient's standpoint. Of course, I'm not talking about losing optimism, but I am talking about being realistic and knowing that understanding the point or the extent of your disease. I think it's really valuable.”

TABLE 3.

Reducing decisional regret; exemplary quotes.

Clarifying and comfort	YA: “I definitely will. I'm definitely going to give it to my mom just so she has the whole insight of everything that I went through with this protocol, so she not only feels comfortable about what we talked about but is comfortable with what she's reading and what I did throughout this whole thing. […] I think really there's just my mom. Just her knowing everything, knowing my preference, knowing how I want to be treated, and knowing to go the far extent on just making sure we can get everything done as possible, and if not, what to turn to and what to expect. That's definitely something I plan on her being comfortable with, as well as me.”
Empowering others by providing them with knowledge	Caregiver: “I realized I had that power in my hands. That if he didn't want something, I could decide for him or say something in his behalf.”
	YA: “In a case like this, it made me realize that you don't always have that luxury, and you do really have to get explicit about some of these things to empower other people around you to take good care of you.”
	Caregiver: “I thought it went really well because again, what I put for him and what he put for me were like we knew each other well enough. I really liked that it just affirmed that we were both on the same page, that we knew each other. I also really liked that he could tell that I knew that he wanted his wishes abided by, even if it would be one of those worst‐case scenarios that he felt comfortable that his wishes would be followed even it'd be hard on mom, we would still follow his wishes.”
Impact on communication with the healthcare team	YA: “It got me a chance to voice what my concerns was going into transplant, and what I felt I wanted my doctors to do in case of how I was feeling. If anything was to turn bad, how I would want my doctors to come in and react to it, and how I would want my doctors to help when it comes to me in pain. Just knowing that they'll be able to come in and do everything that I've asked, my wishes, when it comes to me being in pain. Medicine‐wise, being able to voice what I want and what I don't want at the time of transplant.”
Relief that preferences are known	YA: “In a sense, I know what to do in case I get hurt or I have a cold or a fever, I know exactly what to do. Whereas, I feel my siblings would be a little lost. It's almost like making a bridge. I can be like, “If you need help, I can help you or if you're feeling ill, I can help you as well.” It's also like, if you are in a situation you can't communicate, at least you know the three of us, the rest of us know what your choices are. You can rest knowing that we know what you want.”

3.1. Navigating Uncertainty While Facing Potential Mortality

3.1.1. Guidance to Navigate Through Uncertainty

For many YAs, the concept of ACP was considered a subject meant for older adults, rather than something that would be relevant for someone their age. YAs reflected upon how their diagnosis disrupted their lives and the uncertainty they encountered regarding treatment outcomes and the future course of their lives: “I'm [age below 30] [laughs]. But I think by my age, I haven't thought about it like, like I was being too confident thinking now, well, I'm not gonna die anytime soon, right? And then this [diagnosis and subsequent treatment] happened.” (YA). In light of having to navigate through this uncertainty, many YAs reported how these circumstances normalized the concept of ACP discussions.

ACP discussions were perceived as helpful to set goals and prepare for potential positive and negative outcomes, including death as a worst‐case scenario. While the timing of the participants' ACP discussions was prior to or during HSCT, some YAs and caregivers considered the discussions to not only be important in the context of transplantation, but in general: “I think everyone should probably do these conversations, even if you're not getting a transplant, just because you never know what will happen.” (YA). They emphasized how in situations where immediate ACP decisions must be made, having such discussions and making decisions could be challenging or overwhelming. However, one dyad considered the timing of discussions about end‐of‐life and death unfitting due to the YA's ongoing treatment and current state of health.

Having longitudinal ACP discussions helped YAs to think of their care preferences and allowed them to structure and verbalize their thoughts at different points throughout HSCT: “All those points forced me to really think about myself and get explicit about my preferences and really start thinking about things more long‐term about my care and what I feel like I need. You're forcing me to get specific and actually put pen to paper and commit and get these ideas down concretely rather than abstractly was very beneficial, especially for someone like me where, when I do get in the thick of illness, a lot of times I'd like to just fade into the background and just weather it and come on the other side.” (YA). Some YAs also reported how they noticed their initial preferences changing throughout their treatment. For instance, preferences regarding the atmosphere in their hospital rooms or how they like to receive medical information could change. As an example, one YA described how he now prefers silence over music. Another YA shared that while she originally wanted the medical team to only provide plans for the day, following transplant, she now prefers to know everything the transplant team was considering or concerned about.

3.1.2. Thinking About Mortality

Reflecting on the content of their ACP discussions, many YAs described talking about topics they had not previously thought about, such as their preferences regarding funeral arrangements. Some YAs struggled with having to think of their own or their caregivers' death. Even though some topics were considered difficult, discussing possible mortality and preferences for funeral arrangements opened up conversations between YAs and their caregivers that they acknowledged would not have otherwise occurred. A caregiver that was interviewed as the YA was facing their end of life described the ACP discussions as the “best thing to do” as it allowed her to make informed decisions for the YA.

To navigate through ACP topics, the use of the communication tool VMC was considered helpful to initiate discussions between YAs and their caregivers. When dyads compared the entries they made for each other, some realized how they would have made different decisions for their dyad partner if they would not have discussed their preferences. Dyads shared that they assumed they knew each other's preferences but then reflected that they had not had in‐depth conversations before: “For some reason, I always thought he [caregiver] didn't want a ceremony for his burial. […] I didn't think it would matter to him to have a celebration of life. […] It [the conversation] was interesting, but now I respect his wishes because […] I would have probably done something completely different from what he wanted.” (YA).

3.1.3. Personal, Cultural and Religious Impact on ACP Discussions

Reasons for why participants had not talked about ACP before varied. Some YAs considered themselves to be too young to think about what they would want if they became critically ill. Others described certain topics as being considered taboo in their culture or religion and therefore avoided as they feared giving voice to these issues could increase the likelihood of death occurring: “Taboo is, we don't talk about the death. We find it is like culture we don't/because if you/we believe that if you think of the death, something bad will happen.” (Caregiver). While some dyads decided not to talk about end‐of‐life care and/or death, others found the study opened discussions around these topics for the first time, allowing dyads to find concordance or even resolve disagreements. This was particularly impactful when the preferences of the YAs did not align with the cultural or religious norms—such as wanting cremation, organ donation, or other post‐mortem preferences: “My mom is a [name of religion] and I'm not, and this can lead to a very different answer to some specific question that we wouldn't agree to each other. Say whether you wish to donate your organs after your death that she wouldn't want me to do so. That can be one problem that we believe that dust to dust, something like that.” (YA).

Yet, despite some subjects being considered taboo, when asked about the cultural suitability of ACP conversations and the VMC communication tool, all but one dyad considered them to be important to have while undergoing HSCT. However, in a few cases YAs and caregivers mentioned that the conversations could have been adapted more to one's individual cultural background by incorporating specific cultural or religious elements or by having their summary document provided in their native language. It was also noted that ACP discussions might not be suitable for everyone, depending on a person's physical or mental state.

3.1.4. Impact on Relationships

Most dyads felt that the ACP discussions had a positive impact on their relationship, with their bonds having been strengthened by sharing preferences and talking through possible scenarios and different priorities. Many caregivers mentioned that the YA had rarely talked to them about their worries or preferences, and having ACP discussions allowed them to gain this knowledge from their loved one. Some YAs also acknowledged that the study allowed them to open up more to their caregivers, and this provided them comfort knowing that their priorities would be honored. Other dyads mentioned limited impact due to their already close relationship: “We were already close, and we always already tell each other what we think and what's on our mind. In this situation, not too much [changed], just that now I know her wishes and she knows mine and it's documented.” (Caregiver). YAs and caregivers reported that the ACP discussion led to a desire to have similar conversations with other family members, to ensure that they were informed about each other's goals of care, regardless of their health.

A reoccurring description of ACP discussions among YAs and caregivers was that even though they were important to have, they were still challenging. The difficulty consistently concerned having to think about possible negative outcomes of the transplant and thinking of one's own or a loved one's mortality: “It was a little hard to think about because nobody wants to think about their parents dying or their loved ones dying, but of course, it's very necessary to have these conversations and I felt like it was/it was a good thing for us.” (YA).

3.2. Reducing Decisional Regret

The longitudinal discussions were reported as an enlightening and clarifying experience: “It was eye‐opening [experience]. It was strange for me because it's the first time [talking about it], but it was okay. [laughs] We understand things that/certain conversations that I've never had with my children.” (Caregiver). By voicing their preferences, YAs expressed how they hoped to empower healthcare providers and caregivers to make informed decisions, in case they could no longer voice these themselves. Knowing that their preferences will be followed by their caregivers and healthcare team, was often described as a “relief”: “I think overall, just knowing what that person wants and it's relief, if anything, I did come to that, I would be able to make decisions, and other people may be able to make decisions for me.” (YA).

To reinforce the YAs' preferences, some caregivers shared that they would rely on the provided documents (VMC and summary of the YAs' preferences) to help guide decision‐making. Caregivers mentioned how knowing the YAs' preferences boosted their confidence and reduced their fear of possibly making wrong decisions: “It was also good because that made me realize I don't have to put this whole weight on my shoulders. It will be shared. I would respect his wishes, and I won't feel guilty as far as doing the wrong thing.” (Caregiver). One family of a YA who became non‐verbal asked that the summary document of the YA's preferences to be kept in a folder placed at the entrance to the YA's hospital room, accessible to all involved healthcare providers, to ensure that the YA's preferences would be known to all involved in their loved one's care.

4. Discussion

The findings from this study highlight how longitudinal ACP discussions prior, during and after HSCT can help YAs and their caregivers navigate uncertainty while facing potential mortality. The data illustrated how being able to make informed decisions felt empowering for YAs as their preferences would be known and, hopefully, respected. These discussions also provided a sense of relief for their caregivers, as the burden of guessing the YAs' preferences was removed, aligning with the findings of a previous study that found family centered ACP for teens with cancer resulted in increased confidence in caregivers [14].

Such relief and the experience of shared knowledge suggest that ACP discussions may reduce decisional regret. Decrease in regret and reduced perceived suffering of patients has been reported for bereaved parents when care preferences are discussed prior to death [15]. One caregiver found having discussed the YAs preferences throughout the course of the study reduced future guilt as she was able to honor her partner's choices for end‐of‐life care.

The data also suggest that an age‐appropriate communication tool enhances the likelihood of favorable engagement. The VMC communication tool used in this study was developed and revised by a large cohort of YAs [30]. In addition to using appropriate ACP tools, the timing of the conversations must be carefully considered [31]. To ensure appropriate timing, we allowed for wide time frames at all three time points of the study, to ensure that the conversations could be held at a time which best suits the YAs and caregivers. Early but flexible timeframes for ACP conversations are needed in order to mitigate potential negative effects, as reported in a recent study on pediatric and young adult ACP [23].

Even though adjustable time frames were provided in this study, the ACP conversations were not considered suitable for everyone, depending on their physical or emotional state. Therefore, aligned with recommendations for end‐of‐life conversations with AYAs by Sansom‐Daly, Wakefield et al. [19], we advise that ACP conversations should follow an individualized approach. This includes a readiness assessment prior to the ACP conversation. Within this study, readiness was actively assessed by introducing the study and its content and consenting to participation prior to initiating ACP discussions. Although most participants in our study considered VMC to be fitting for different cultures and religions, they were not considered suitable to every cultural context. Therefore, we propose that more linguistic and cultural translations of ACP tools are developed. A study on the Australian adaptation of VMC highlights how even in a similar context of western, English‐speaking countries, there is a need for adaptation. The VMC version in Australia underwent linguistic, organizational, and visual alterations [32]. The adaptation of the tool in non‐English speaking countries, such as seen in Brazil, requires a linguistic translation in addition to the cultural adaptations [33]. Cultural adaptations can ensure YAs, caregivers, and healthcare providers comfort when engaging in ACP discussions [34].

While the focus of ACP discussions was the YA and their caregiver, healthcare providers could also benefit from the discussions. Providers can learn important information about the YAs' needs through documented preferences. As healthcare providers' discomfort is a reported barrier to ACP discussions, ACP tools can open the door to having difficult conversations [21]. Therefore, we propose that healthcare providers receive communication trainings using ACP guides to engage YAs in serious illness conversations.

4.1. Study Limitations and Strengths

This pilot study successfully enrolled 21 YAs from ten countries preparing for HSCT. We recognize that HSCT is a specific medical intervention and that these serial conversations may not apply to all YA patients, depending on the YA's diagnosis, illness trajectory, treatment timeline, and invasive nature of their medical treatment. At the same time, as HSCT is a clinically demanding endeavor with very high symptom burden, this pilot study's success despite these constraints supports the feasibility of broader implementation. This study is limited by exclusion of non‐English‐speaking participants and an overrepresentation of maternal caregivers. Furthermore, all interventionalists in this study are specialists in palliative care. While having such experts as interventionalists is a strength of this study, it is possible that ACP discussions led by less experienced interventionalists might have yielded different results. This underscores the importance of adequate ACP communication training for providers. Another strength of the study was the multidisciplinary research team with qualitative training that enabled an in‐depth analysis of the rich dataset.

4.2. Clinical Implications

This study demonstrated that an age‐appropriate ACP intervention can provide comfort and relief to YAs while also enabling them to better communicate their preferences to their caregivers and healthcare team. These findings also suggest that access to discussions utilizing age‐appropriate communication tools, ideally guided by trusted providers, can support YAs, their families, and their medical team as they navigate serious illness together. While ACP generally falls into the expertise of palliative care providers and collaboration with a palliative care team can benefit YAs facing serious illness, ACP can also be thought of as a “primary palliative care” skill, meaning all healthcare providers may develop comfort in having these difficult and courageous conversations when provided access to appropriate training and tools [35]. Efforts to improve provider comfort with ACP are of particular importance given the growing difference between the supply of specialty‐trained palliative care providers and the demand for palliative care services [36]. We are hopeful that our findings empower psychosocial providers caring for YAs with serious illness to employ primary palliative care skills by engaging their patients in ACP discussions guided by effective communication tools.

5. Conclusion

Age‐appropriate ACP discussions allowed YAs to express their preferences throughout the HSCT process and discuss possible differences with their caregivers. This study demonstrated that longitudinal ACP discussions can reduce stress, provide relief, and empower YAs and caregivers alike. In turn, these conversations can strengthen dyadic relationships, support informed decisions on the YAs behalf, and reduce decisional regret for caregivers, critical components to providing support to patients, caregivers, and providers.

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Author Contributions

Anna Katharina Vokinger: data curation, formal analysis, investigation, methodology, writing – original draft, writing – review and editing. Brian Pennarola: conceptualization, data curation, formal analysis, methodology, project administration, resources, validation, writing – original draft, writing – review and editing. Paige Kube: formal analysis, validation, writing – original draft, writing – review and editing. Devon Ciampa: formal analysis, validation, writing – original draft, writing – review and editing. Gisela Michel: writing – original draft, writing – review and editing. Jennifer Hendricks: methodology, writing – original draft, writing – review and editing. Brigit Rweikiza: conceptualization, project administration, resources, writing – review and editing. Sara K. Silbert: conceptualization, data curation, formal analysis, methodology, project administration, resources, validation, writing – original draft, writing – review and editing. Lori Wiener: conceptualization, data curation, formal analysis, methodology, project administration, resources, supervision, validation, writing – original draft, writing – review and editing.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Supporting Information S1

Supporting Information S2

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.