{'fraction_non_alphanumeric': 0.025982905982905983, 'fraction_numerical': 0.004195804195804196, 'mean_word_length': 5.4740442655935615, 'pattern_counts': {'":': 0, '<': 0, '<?xml version=': 0, '>': 0, 'https://': 0, 'lorem ipsum': 0, 'www.': 0, 'xml': 0}, 'pii_count': 0, 'substrings_counts': 0, 'word_list_counts': {'cursed_substrings.json': 0, 'profanity_word_list.json': 0, 'sexual_word_list.json': 0, 'zh_pornsignals.json': 0}}
‘It was like taking an inner bath’: A qualitative evaluation of a collaborative advance care planning-approach

Background: Impaired readiness may hinder purposeful advance care planning in cancer patients. To reduce barriers to participation in end-of-life decision-making, a collaborative intervention was developed combining a psycho-oncological approach of dignity-based and cognitive-behavioural interventions, followed by a standardised advance care planning-process. Aim: To evaluate the novel collaborative advance care planning-approach by synthetising cancer patient and carer perspectives on communicational and relational effects. Design: As a sub-project of a mixed-methods evaluation study, we conducted an inductive content analysis of qualitative interviews with advanced cancer patients and caregivers to deeply explore the focused impact of a collaborative advance care planning-approach on communication and relationship dynamics. Setting/participants: Twelve patients with advanced cancer and 13 carers who participated in a collaborative advance care planning-intervention. Results: The collaborative advance care planning-approach was consistently evaluated positively by participants. Transcriptions of the semi-structured interviews were coded, analysed and merged under three main themes concerning communicational and relationship dynamics: action readiness, content readiness and impact on future communication and relationship. Conclusions: The novel intervention served to foster individual readiness – including action and content readiness – for advance care planning-discussions by addressing highly individualised barriers to participation, as well as specific end-of-life issues. In addition, societal readiness could be promoted. Although the brief psycho-oncological intervention could not fully meet the needs of all participants, it can be used to develop individual psychotherapeutic strategies to improve different facets of readiness. The collaborative advance care planning-approach might require more time and human resources, but could pioneer successful advance care planning.


Introduction
In recent years, there has been growing awareness of the importance of patient-centred end-of-life care including shared decision-making. In this respect, advance care planning (ACP) has been advocated as a crucial element of high-quality palliative care. 1 Advance care planning is a structured conversational process enabling 'individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate'. 2 Cancer patients and their caregivers show high levels of distress and palliative care needs. 3 There is little doubt that advance care planning improves many patient-relevant endpoints. 4,5 Additional evidence suggests psychological benefits for patients' families. 6 Accordingly, Johnson et al. 7 argue that advance care planning should be understood relationally and implemented as a family-centred, social process rather than an individual directive.
However, inconsistent evidence for some outcome parameters, limited uptake for advance care planning despite awareness-raising initiatives, and situational and organisational barriers led some to challenge the utility of advance care planning. 8 Still, open communication in families is not only an indicator of higher congruence in care preferences 9 but also associated with less aggressive care shortly before death and better quality of life. 10 Indeed multiple psychological barriers lead to reservations to engage in end-of-life conversations in the family context. 11 The resulting taboo nature of death and dying impedes a successful initiation of advance care planning-discussions. 12 Nevertheless, even patients who committed to advance care planning may display impaired readiness, especially when discussing potential end-of-life scenarios. Facilitators must therefore permanently adjust the sequence and depth of conversations, 13 yet compromised readiness may hinder a constructive conversation flow or even cause serious distress following standard advance care planning-discussions.
Psycho-Oncology is concerned with patients', families' and caregivers' responses to cancer, studying psychological, behavioural and psychosocial factors involved in the risk, detection, course, treatment and outcome of cancer. 14 Psycho-oncological care reduces emotional distress and improves quality of life of patients and their partners helping them to cope with the disease. [15][16][17] Combined value-based and motivation-based interventions had positive effects on healthy adults' readiness to engage in endof-life topics. 18 Strikingly, even though a nationwide voluntary certification process in Germany led to an increase in psycho-oncological care-frequency, the minority of cancer patients make use of psycho-oncological services, with weak data pointing to individual reservations, hindering patient characteristics, but also organisationalstructural hurdles. [19][20][21][22] Acknowledging a multitude of barriers for advance care planning-uptake at an individual and interpersonal level, 23 a mixed-method randomised controlled trial was designed to investigate the efficacy and effectiveness of a collaborative advance care planning-approach. To improve access and quality of advance care planning the intervention targeted psychosocial barriers of advanced cancer patients and informal caregivers towards end-of-life discussions applying dignity-based and cognitive behaviourbased interventions preceding a standardised advance care planning-process. 24,25 This qualitative research adds to the literature by exploring cancer patients' and carers' perceptions of a novel collaborative advance care planning-model evaluating combined effects focusing on communication and relationship dynamics.

Study design
Col-ACP is a mixed-method randomised controlled trial evaluating a complex advance care planning-intervention including psycho-oncological sessions (cf. Figure 1). A qualitative approach was embedded to further specify the intervention's impact through in-depth feedback by patients and carers.
The intervention included a total of six sessions. The first session focused on important milestones in the patient's life story using a dignity therapy question protocol. In the second session, the patients elaborated on the relevance of planning their end-of-life phase under psychological guidance. This did not only encompass discussing potential benefits but also barriers to engage in effective patient-family communication and advance care planning. Identification and modification of these barriers were based on intervention techniques of cognitive behavioural therapy, taking into account existential approaches. To incorporate relatives' perspective, a third session was conducted with family carers only, analogous in content and technique to the second session. Session 4 provided a moderated conversation process to patients and carers aiming at sharing the dignity-based experiences in order to identify and remove individual barriers to end-of-life communication. Finally, the last two sessions were dedicated to the standardised advance care planning-process. The duration of each of the first four sessions was set at about 50 min; the length of the advance care planning discussions was entirely based on individual needs. The maximum length for the intervention phase was predetermined to be 16 weeks. Intervals between the individual micro-interventions were agreed individually with the patients and their relatives. An extensive research protocol comprising detailed information on study design, participant characteristics, recruitment sites and methods, the intervention, data collection process and analysis has been published in an open access format. 25 The col-ACP-study was registered at ClinicalTrials.gov (NCT03387436).

Setting
For the entire col-ACP trial, we recruited adult cancer patients with non-curable diseases and their family carers from in and outpatient settings of the University Hospital of the Philipps-University Marburg (Department of Haematology, Oncology and Immunology, Department of Oncological Urology, Department of Oncological Gastroenterology, Department of Radiation Therapy), the oncological rehabilitation centre Klinik Sonnenblick in Marburg, and the specialist community palliative care team of the county of Marburg-Biedenkopf.

Sampling
The col-ACP trial was open to all neoplastic entities. Patients were screened with the 'surprise question', 26 however, were excluded if the treating physician expected survival to be less than 4 months after randomisation. Further exclusion criteria were incapacity to perform the study intervention (e.g. ECOG ⩾ 3), insufficient German language skills and cognitive inability to give informed consent. For this sequential qualitative study, we targeted a purposeful sample of patients and family caregivers after completing advance care planning-discussions to capture a breadth of views.

Recruitment
We enrolled participants of col-ACP recruited from oncological inpatient and outpatient settings of the University Hospital of Marburg to be able to approach patients personally. All participants gave their informed written consent before study participation.

Data collection
To evaluate the intervention comprehensively, we saw the need to address the research subject through a qualitative evaluation. This served to gauge subjective views of individuals, but also group phenomena, in order to complement the quantitative results of the randomised controlled trial. To that end, the multidisciplinary research team (C.S., P.B., J.R., M.K., S.H.) developed an open-ended question interview guide aiming at the participants' experience with the intervention (for an English translation cf. supplemental material). In particular, we examined how participants engaged in the conversation process, how end-of-life decisions were made, and to what extent communication and relationships changed post-intervention. Two researchers (T.M., A.G) conducted face-to-face semistructured interviews that were digitally audiotaped. We interviewed patients and caregivers separately to avoid potential mutual influence or conflicts that could have been triggered by dyadic interviews. Open communication was encouraged by emphasising the interviewer's independence from the col-ACP main research team. Recruitment was completed when the research team agreed that data saturation was achieved. 27 Interviews were transcribed verbatim but care was taken to anonymise patient, carer or staff identifiable references. For publication, illustrative quotes were pseudonymised and translated from German into English by a fluent speaker.

Analysis
Transcripts were managed using MAXQDA Analytics Pro. We performed an inductive content analysis based on the analytical framework proposed by Mayring, 28 widely used in medical qualitative research working with large amounts of written data. The analysis was conducted in several analytic steps. In early stages of the analysis, discrete sections of text representing relevant ideas were clustered to codes by A.P. through line-by-line review of five interview transcripts for each participant group. Ensuring a structured approach in this step of the analysis, each code received a 'code definition'. Passages assigned to codes were compared both within and across interviews and overarching themes were identified and formed into a structure of codes. A.P. then applied the developed code structure to all transcripts and expanded it in an iterative process as new aspects arose. To enhance rigour and confirmability, four additional authors read all transcripts. Repetitive team meetings served to review preliminary results and iteratively identify and redefine pertinent themes emerging from the data exploring the intervention's impact on communication and relationship of cancer patients and their carers.

Ethics
Ethical approval was obtained from the institutional review board of the Philipps-University Marburg (ID-No.: 173/17). The study was conducted in accordance with the Declaration of Helsinki, Good Clinical Practice guidelines and the EU data collection directive. This study is reported following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. 29

Participants
We performed interviews with 12 patients and 13 caregivers of 13 different patients between April 2018 and December 2020. The median interval between the last advance care planning-appointment and the qualitative interviews was 72 days for patients and 76 days for caregivers. Participant characteristics are provided in Table 1.
Our qualitative study revealed relevant influences of the intervention on communication and relationship. Three main themes emerged: action readiness, content readiness and impact on future communication and relationship (for an overview including subthemes cf. Table 2). In the following, we refer to the term action readiness as an essential factor when deciding whether to participate in advance care planning-conversations. Content readiness includes the ability to identify one's values and wishes and to address different end-of-life issues during the advance care planning-process for decision-making. Within impact on future communication and relationship, we distinguished societal readiness, which encompasses the ability to engage with advance care planning on society-level.

Action readiness
To facilitate goal-oriented discussions, prerequisites had to be established to promote participants' action readiness.
'Getting in touch'. Some participants indicated that they had not known how to create an advance directive, especially when critical of the practicalities of standard tickbox directives. Some admitted that they had avoided end-of-life issues in everyday life and consequently intentionally or subconsciously postponed writing advance directives. Participation in col-ACP was therefore seen as a convenient opportunity to overcome one's reticence and thus confront end-of-life decisions.

You really have to take time for this topic, and this was the framework for it. That's why it was good. Otherwise, it wouldn't have been done. You always put it off anyway. Like a tax declaration ((laughs)). (Carer 3, daughter)
Sustainable relationship. Participants appreciated when the facilitator created a non-judgemental, empathetic atmosphere that allowed free expression of thoughts. Most participants valued the supervised emotional approach to end-of-life issues by the facilitator, which enabled a smooth communication process characterised by openness.

Content readiness
Relationship dynamics Empathy and mindfulness. Our collaborative advance care planning-approach exceeds a mere patient-centred intervention by providing for close involvement of relatives. Many participants, patients and carers alike, showed empathy for their relatives who were emotionally burdened by the discussions. For some pairings, this resulted in a more relaxed and understanding interaction within and beyond advance care planning-discussions.
Yes, you are more considerate. In the past, when things didn't go so well, we used to squabble. And now it's more like: "Ommm". (Carer 10,husband) Carer's role. The carers' perceptions of their role within discussions and ultimately the decision-process varied greatly. Their interpretation ranged from a passive to a supportive, advisory role to mostly one of the key players in a shared decision-making process.
Anyway, we discussed it for both of us and then decided how we wanted it. And that's why it's always easier when there are two of you. (Carer 1, husband) Patients for the most part connoted their carers' presence positively. Better absorption of new information, being on the same level of knowledge but also communication of their wishes to inform carers' future decisions were central concerns in this context.
We were in agreement on the subject, but now she has also been intensively informed about what is really going on. Because it's not a simple decision, even if it's in writing. She still has to make a decision, which is not so easy either. (Patient 5,male) Patients' views on the range of carers' activity levels within the discussion were similar to those of the carers', but the perspective on decision-making responsibility differed. Many patients did not feel that their relatives' participation or opinion influenced their decisions.

Coping
Emotional commitment. The collaborative advance care planning-approach fostered coping strategies for both, patients and their caregivers. Most participants indicated that the intervention provided facilitated in-depth engagement with the illness, possible courses, and potential treatment goals. Although all patients were informed about their advanced cancer, the advance care planningintervention helped some participants becoming fully aware of the diagnosis.

Retrospectively, I was a little bit influenced or impressed by the fact that I am in this palliative stage, although I don't really feel that unwell. (Patient 8, male)
However, the intervention's emotional impact was mixed. Relief, confidence, and hope were positive emotions that participants reported in the interviews.

Of course, it's also relieving. Sometimes it's better to give something away to strangers than to your own partner, because the relationship of trust is based on a completely different foundation. (Patient 6, male)
Sadness and fear were the dominant negative emotions experienced by participants that had to be addressed. Only a few participants reported serious emotional distress resulting from the discussions, which eventually continued after the conversation ended.
And that was very difficult for me, to talk about it and think about it, I have to say. It pulled me down so much that I had to deal with it for days. (Carer 9, wife) Therapeutic effects and coping strategies. Although in some cases participants felt emotionally burdened by the conversations, they were able to derive positive effects in the long term. Some patients and carers alike saw immediate therapeutic effects of the intervention.

The conversations were actually always, well, I always said that I always had the feeling that it was like taking an inner bath. Yes, I always felt as if I could let out all the dirt inside that was weighing me down. That's why I've always found it so cleansing, from the inside out. (Carer 2, wife)
As a result of the intervention, participants succeeded in aligning their emotional-focused coping strategies.
Cancer is an asshole, remains an asshole. I  Decision-making Engagement. Participants recognised the value of approaching the issues of illness and dying, identifying and verbalising attitudes and concerns to ultimately establish treatment goals. In this context, they treasured information gained, clarification of questions, thoughtprovoking impulses and sensitisation to distinct topics.

The conversations gave us so much information that we were able to think clearly. It was really very informative and somehow you could also understand your own decisions better. (carer 8, brother-in-law)
While relatives for the most part engaged in conversations to record patients' preferences, some patients felt unable to make end-of-life decisions. These patients did not feel constrained by their disease or felt overwhelmed struggling to empathise with their own end of life. Others were in early stages of coping with their disease, so they could not embrace a focus other than cancer treatment. In a few patients, content readiness premised on the understanding that decisions were not definitive or irrevocable. In this respect, they referred to the possibility of being able to amend the advance directive should their perspective change. Assistance. Participants, especially those who already had conventional advance directives, highlighted clear benefits of the individual-centred concept of advance care planning to make precise end-of-life decisions.
I already had one earlier through the nursing service. And the advance directive that was recommended to me here, let's just say, is more detailed and more precise. Well, there is no grey area or few grey areas, which was the case with the other one. (Patient 5,male) Moreover, some patients who had not previously had advance directives stated that they would not have felt able to do so on their own valuing the facilitator's expertise in helping patients understand and complete advance directives according to their wishes.

Impact on future communication and relationship
While most participants had not noticed any relevant changes in their post-interventional relationship or communication style, individual implications became apparent in the course of the interviews.

Enforcing the patient's will
Clarification of preferences and priorities. Some patients confided previously unexpressed, detailed preferences and priorities to their carers to ultimately adequately guide them in making future end-of-life decisions. Clarification of matters and anticipatory end-of-life planning in the patient's best interest relieved the burden on relatives who had previously found themselves unprepared to be confronted with difficult decisions for another person.
Yes, we were just glad that it was done. When the time comes that everything is settled. It makes you feel calmer inside to put it that way. It's satisfying. (Carer 10, husband) Supporting health-care proxy. Guidance on patients' wishes led to a perceived strengthened position in patient advocacy among caregivers and a readiness to enforce the patient's interests if necessary.

And we probably won't have any big problems with that. Because it is clear what [patient's name] wants in his directive and no one can shake it. That is what [patient's name] demands and that is what will be enforced. (Carer 8, brother-in-law)
However, some carers felt the burden of responsibility that comes with being appointed as surrogate decision-makers.

Yes, it's a lot of responsibility that could possibly come my way one day. You have to think about that because it's very difficult. (Carer 4, wife)
Thematic introduction. Many participants perceived end-of-life discussions initiated by the intervention to be completed and only gave little space in everyday life to end-of-life topics.
But we didn't talk about it that much because we had already talked about everything before. Because when the three of us including the facilitator came together, we had already started talking. So we did talk with each other and afterwards we didn't need to talk that much because everything was already clear. (carer 12, mother) However, some participants felt empowered by the psycho-oncological interventions to more easily pursue endof-life conversations with their loved ones. Participants expressed the effort to carry the idea to the outside motivating others to engage in advance care planning.
I would definitely recommend this to others. I have a friend who also has breast cancer for the second time. She was with us the other day, so we asked her: "Do you have one?" (Carer 10,husband) Carers' motivation for advance care planning. Newly gained insights from discussions had direct implications for carers' readiness to make health arrangements for themselves. Most carers felt enabled to determine their own priorities and encouraged to create their personal advance directives.
Well, it raised the idea [. . .] in the family, that we will also make an advance directive. And that way we can make sure that we won't vegetate. (Carer 8,

Discussion
Our findings provide valuable insights into patient and carer perspectives on the effects of an innovative advance care planning-intervention on communication and relationship dynamics within and beyond end-of-life discussions. Indisputably, the approach was favourably evaluated by all participants but two main conclusions need to be drawn from our qualitative study. Firstly, psycho-oncological access to advance care planning strengthens readiness for advance care planning-discussions by contributing to a comprehensive preparation of patients and relatives for end-of-life decisions. Secondly, it may help to explore psychological barriers, but also to differentiate between therapeutic support needs and autonomous decisions that hinder readiness to engage in end-of-life decision-making.
There is firm evidence that advance care planning increases the completion of advance directives and the occurrence of end-of-life discussions. 5 In our study, the collaborative approach particularly strengthened action and content readiness supporting a logic model of key mechanisms for successful advance care planning for advanced cancer patients. 30 Moreover, in addition to bolstering individual readiness, positive effects on societal readiness have been reported. Societal engagement with the concept, in turn, suggests a reinforcement of individual readiness.
For promoting higher patient readiness, some organisational, informational, communicative, and emotional barriers had to be addressed. In line with earlier research, our study demonstrated that open communication was connoted positively by most participants, 31 but seemed to be enhanced by building a sustainable relationship with the facilitator through the psychological pre-sessions. The successive exposure (step-by-step 'getting in touch' technique) to dignity-based and cognitive behavioural interventions enabled most patients and caregivers to engage in advance care planning-discussions. We contribute to the evidence for conventional advance care planninginterventions that gaining new information and thoughtprovoking insights was highly valued by participants as it empowered them to make informed decisions and to acquire some sense of control over their medical future. 31 Besides, discussing and disclosing values and care preferences with surrogates, relevant patient-centred constructs in advance care planning, reassured patients that their best interests will be adequately served at the end of life. 32,33 Furthermore, they hoped to remove a burden from their relatives and make it easier for carers to assert their priorities. 33 Most carers did feel relieved by patients' documentations, but some sensed a weight of responsibility that comes with the task.
In addition to facilitating decision-making, many participants reported a consolidation of empathic intrafamilial communication, a promotion of psychological processing, and ultimately coping with the disease as a result of the intervention. This can be assumed to be an effect decisively attributed to the collaborative approach, which on the one hand strengthens individual resources in the disease process, but on the other hand also aims to reduce communicative barriers.
Interestingly, patients' rationales behind and attitudes towards decision-making often differed fundamentally from carers' views which does not only seem to apply to the novel intervention but adds new insights on patient decision-making concepts to the existing literature for advance care planning. Of particular relevance appeared contrasting perceptions concerning the carer's influence on decision-making. Though many carers considered themselves part of a shared decision-making process, carers' participation was not necessarily required to establish content readiness since patients mostly regarded their decisions as independent and uninfluenced by their relatives. These results build on earlier research finding that patients often saw no need for relatives' involvement in decision-making and tended to participate alone in the advance care planning-process. 33 The fact that, nonetheless, patients considered relatives' participation -as required by our study design -positive could be owed to patients' desire to prepare their relatives for their role as advocates. 34 Despite the discrepant perceptions of the carer's role in decision-making, the concept seems to be useful in providing the opportunity for patients to communicate wishes openly and to provide reassurance that these will be followed. Additionally, carers benefit not only from information gain but also from the feeling of participation and empowerment to make end-of-life decisions in the patient's best interest.
Despite our intervention, some patients faced challenges in establishing content readiness as previously described for standard advance care planning-interventions. 13 Although all patients agreed to participate in the study after being informed about the rationale and intervention itself, some did not feel ready to make far-reaching decisions for all end-of-life scenarios. Psycho-oncological assessments within the collaborative approach may assist to determine if impaired readiness is rooted in considered autonomous decision-making that ought to be accepted or in psychological barriers that may be addressed therapeutically. Despite the additional psycho-oncological support offered, the collaborative approach may not generally succeed to alleviate end-of-life discussions for all patients. This evidence on impaired content readiness could provide arguments to advance care planning-critics, who fear that respect for patient autonomy will turn into a new paternalism that exerts pressure on people to make binding statements about impending treatment scenarios. Care teams must thus self-critically reflect upon their own plausible aspiration for certainty in end-of-life decision-making through advance care planning to avoid unreasonable demands on patients feeling reluctant to make provisions for health crises. 35 Hence, psycho-oncological interventions for patients with limited readiness should first target stress issues of primary concern to the patient before confronting them with end-of-life decisions. Nevertheless, even if patients choose not to engage in end-of-life decisions, insights gained could potentially inform carers about motives and thus equip them for reasonable proxy decision-making.

Strengths and limitations
This qualitative approach provided cancer patients' and carers' perspectives on a new intervention that could not have been captured by quantitative research. Nevertheless, our findings may have been influenced by a unique sample comprising participants that were willing to engage in lengthy conversations but also in a timeintensive mixed-method study. It is therefore conceivable that less committed pairings would have reported psychooncological sessions having mitigating effects on readiness. Furthermore, our methodology did not allow us to elaborate the sub-interventions' impact, so that only the overall effect of the collaborative advance care planningapproach could be assessed instead of distinguishing individual benefits of the sessions. Thus, general effects of advance care planning were certainly also recorded, which cannot always be clearly delimited from the collaborative intervention.

What does this study add?
Our qualitative study revealed that the collaborative advance care planning-approach had an impact predominantly on action and content readiness. Even though the intervention might require more time and human resources, it could serve as a precursor to end-of-life conversations and increase the number of reliable advance care planning-discussions. It may further identify individuals with a need for psycho-oncological support beyond collaborative advance care planning to establish readiness. In lower-resource settings, screening for psychological barriers to advance care planning could narrow the target population and thus promote feasible implementation. Quantitative data from our mixed-method study on patients' and carer' quality of life, levels of distress and depression as well as communication barriers will complement our results to thoroughly evaluate the effects of the collaborative advance care planning-approach.