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Abstract
Background Advance care planning (ACP) is a process of discussing and recording patients’ preferences for future care, aiming to guide healthcare decisions at the end of life (EOL).
Aim To explore nuances in the long-term impact of ACP by studying patient and relative experiences.
Design A qualitative follow-up interview study. Interviews were recorded, transcribed and analysed using thematic synthesis.
Setting/participants 3 patients with a life-limiting disease (lung or heart disease), affiliated with a major Danish hospital, and 7 relatives were interviewed 1 year after participating in an ACP discussion.
Results The experiences were diverse. Some patients and relatives felt ‘relieved’, ‘more secure’ and more in control due to ACP. To some, ACP had led to open communication rather than ‘beating around the bush’, and to spending more quality time together. However, others perceived ACP as irrelevant. Some stated that the patient's wishes had not been met regardless of ACP. Others felt that EOL questions cannot be realistically considered until ‘you're in the middle of it’, because many factors are involved. In one case, participating in ACP led to a patient-relative conflict, resulting in EOL issues being ‘tucked away’.
Conclusions The study reveals great diversity in patient and relative experiences of ACP. The study challenges previous research which mainly emphasises ACP as a valuable tool to optimise EOL care. This study stresses the importance of awareness of the highly individual nature of preferences and needs of patients and relatives regarding information, involvement and communication about EOL care.
- Cancer
- Chronic conditions
- Chronic obstructive pulmonary disease
- Communication
- Heart failure
- Terminal care
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- Cancer
- Chronic conditions
- Chronic obstructive pulmonary disease
- Communication
- Heart failure
- Terminal care
Background
Advance care planning (ACP) can be described as a process of reflection and communication between patients, relatives and healthcare professionals, encompassing discussions about the patient’s values and preferences for end-of-life (EOL) care, and documentation of, for example, treatment preferences and proxy decision-makers. ACP is recommended as best practice and is intended to ensure that medical and EOL decisions are in line with the patient's preferences, should he or she lose the capacity to express them.1 ,2
Quantitative research on ACP has found the concept to have a number of significant benefits. ACP has generally been associated with better quality of life for the patient during the terminal phase, fulfilment of patients’ EOL preferences, a less resource-intensive care pathway, as well as reduced stress, anxiety and depression among surviving relatives.1 ,3 ,4
However, when qualitative studies have delved into patients’ and relatives’ attitudes towards ACP and experiences with this concept, a more complex picture is painted. Although many of these studies point out positive consequences of ACP, for example, an increased sense of security,5 they also emphasise challenges experienced in connection with ACP, for example, barriers regarding the uptake and implementation of ACP6 and doubts as to the relevance of ACP.7
Although a number of qualitative studies have explored patients’ and relatives’ attitudes towards ACP, most of these studies focus on the immediate experience of ACP.5 ,7–9 Thus, we still have little qualitative, explorative knowledge of the concrete significance ACP can have for patients and relatives over time, particularly which role ACP plays as illness progresses, how ACP is utilised, and how ACP affects the life (and death) of patients as experienced by patients and relatives themselves. Hence, the aim of this study is to explore the long-term impact of ACP as experienced by patients and relatives.
Methods and materials
Setting
The ACP concept is new in Denmark where there is no tradition of carrying out formalised, systematised conversations with patients about their wishes for EOL care. The current study is part of a larger project testing ACP in a Danish context among patients from the departments of cardiology, pulmonology and oncology. The study was carried out by the first and fourth authors (PA and MHS) at Aarhus University Hospital, Denmark, under the supervision of the second, third and fifth authors (MAN, TB and ABJ).
Data collection
In connection with a pilot study for a larger ACP project, 10 seriously ill patients participated in an ACP discussion during the summer of 2013. Patients were recruited via purposive sampling, based on being chronically and/or seriously ill from lung disease, heart disease or cancer. Eighteen patients were contacted, and 10 patients agreed to participate.
The 10 ACP discussions were carried out by the same doctor who did not know the patients in advance. In three cases, one or more relatives were present. Discussions were carried out in the patient's own home or at a private room at the hospital, lasted between 28 and 112 min, and resulted in a written document being completed (table 1). Patients’ answers were registered in their medical hospital record, and a copy was sent to the patient's general practitioner, the community care nurses if involved in the care, and to the patient himself/herself.
Advance care planning document
In the first study, 7 of 10 patients agreed to participate in a qualitative interview conducted by PA about their experiences with the ACP discussion within a week after the discussion had taken place. Via referral sampling, PA furthermore carried out interviews with six relatives who had participated and five relatives who had not participated in the ACP discussion.10 ,11
A year after the original interviews were carried out, the current follow-up study was performed. All patients and relatives from the original interview study had agreed to being contacted again and were contacted during the summer of 2014. Three patients and seven relatives agreed to a repeat interview. Three patients had died since the original study, and one patient and four relatives did not wish to participate again, either because they felt overburdened or—for relatives—because the patient in question had died only recently. The interviewees of this study represent six different ACP discussions.
Interviews lasted between 25 and 60 min, and a semistructured, qualitative interview guide with open-ended questions12 was used. Themes in the interview guide aimed to explore what had happened in the lives of participants in general since the first interview and the use of attitudes towards and experiences with ACP in particular. Prior to each interview, PA also re-read the participant's transcribed interview from the original study and added questions of specific interest. Six interviews were carried out face to face, while the remaining four participants preferred to be interviewed by phone.
Participants
Participants were between the age of 27 and 85 years, and all were ethnically Danish and living in the municipality of Aarhus. Three participants were patients: two with lung disease and one with heart disease. Two were females and one male. Seven participants were relatives, of whom five were females and two males. Their relationship to the patients varied: five were children of a patient who had participated in an ACP discussion, one was a spouse and one was a very close friend.
Participants were all informed of the purpose of the interview and gave their written or (in the case of phone interviews) oral consent.
Data analysis
All interviews were recorded, transcribed and then analysed using thematic synthesis as formulated by Emerson et al.13 On a thorough reading of all transcripts, initial codes were generated and initial memos written. By investigating relations between codes, overall themes were selected and explored in relation to the full data set. Themes and codes were identified by the first author and then discussed among the group of authors before the final analysis was conducted.
Ethics
According to the Central Denmark Region Committees on Health Research Ethics, the Biomedical Research Ethics Committee System Act does not apply to this study. The study was approved by the Danish Data Protection Agency (j.no. 1-16-02-72-14).
Results
The thematic synthesis of the interviews identified three different kinds of overall impact that ACP had had on patients’ and relatives’ lives and/or EOL: positive impact, no impact and negative impact.
Positive impact of ACP
One patient and three relatives described different positive effects the ACP discussion had had on their lives or on the patient's EOL. Three factors in particular were emphasised as having been affected in a positive way by ACP: communication, awareness of dying and a sense of empowerment.
Communication
Three relatives each described how ACP had paved the way for more open communication about EOL care and death. A male relative described how it was ‘hard as a relative to start those difficult discussions’, but that the ACP discussion had opened the way for EOL care and death being acceptable topics of conversation. ‘It made it more natural to talk about death and the things we needed to take care of’, the daughter of a male patient said.
The ACP discussion also opened up for other related issues, for example, arrangements concerning the patient's estate, but also more emotional conversations about unresolved issues that needed to be addressed. A male relative recounted:My dad and I hadn't been very good at having that kind of talk, but we did so after [the ACP discussion]. We had a little bit of gallows humor about it, but it also meant that I know things now that I wouldn't have known, if we hadn't had those talks. [PA: “Like what?”]. Like stuff I had thought about in connection with my childhood, and why things were the way they were, and why he had done certain things.
It is worth noting, however, that although the ACP discussion had improved communication between some of the patients and relatives, none of the 11 interviewees felt that the ACP discussion had in any way affected their communication with healthcare professionals about EOL care and death.
Awareness of dying
Three relatives described the ACP discussion as ‘an eye-opening experience’ in the sense that the ACP discussion made them realise that the patient was fatally ill. For instance, one daughter said that ACP meant that she became aware that ‘mom [the patient] was living on borrowed time’.
For some, this realisation had resulted in spending more quality time together. One woman described how her late husband had had ‘a lot of wonderful experiences during the final time of his life’, because their family had made an effort to meet up and spend time together.
Empowerment
Finally, one female patient reported feeling ‘relieved’, ‘more secure’ and ‘more in control’ after the ACP discussion. She attributed these feelings of what may be termed empowerment to the circumstance that due to ACP her preferences had become known, and that she had reflected on and ‘made plans for my final days’.
No impact of ACP
Although all interviewees regarded ACP as a relevant concept, some of them still felt that the ACP discussion had been of no consequence to them. This was generally the case for two patients and three relatives who believed that ACP was either insignificant or that an ACP discussion was not relevant yet.
ACP perceived as being insignificant
The three relatives perceived ACP as having no significance. One prominent reason for this was distrust that the preferences described in the advance directive would be met. Throughout the course of the patients’ disease, relatives and patients alike had experienced a Danish healthcare system under economic and time pressure and subsequently doubted that the patient's wishes of, for example, dying at a hospice would be met regardless of ACP.
Another reason for perceiving ACP as insignificant was the view that no one can foresee or control events in connection with EOL care and death which makes it difficult or even impossible to plan for in advance. A daughter described how she believed that her mother had not received sufficient pain relief during her final days due to the neglect of a single care assistant on duty at her mother's nursing home the night her mother died. The daughter had been happy with her mother's EOL care in general, but felt that this single individual care assistant had acted neglectfully in connection with her mother's death, and that such circumstances cannot be accounted for in advance.
ACP perceived as not being relevant yet
In general, patients and relatives who were struggling with serious illness were more concerned with their everyday troubles and problems than with preparing for EOL care. Most described how they preferred to take things as they come and not worry too much about the future. A male patient said:It [EOL care] isn't something I have thought about distinctly since then [the ACP discussion] because it's, you know, you're not in that situation yet, and then it doesn't seem relevant to me.
Negative impact of ACP
In a single case, participating in ACP resulted in less communication about EOL, illness and death, as described below.
Obstructing communication
Participating in ACP had led to a conflict between one female patient and her daughter. While the patient felt she had benefited from the ACP discussion, the daughter had bridled at the idea of discussing her mother's EOL care and death. The daughter explained:I felt it was completely out of context that my mum was enrolled in this [ACP] project, because she's not that sick. My reaction was that I thought that this is just ridiculous! I was floored by it […].This has actually led to my mum and me not talking about her illness and the problems it entails. […] In that sense, it has been tucked away.
This single case of a patient–relative conflict reveals how an ACP discussion has the potential to obstruct communication about EOL care and death, if one or more of the involved parties are offended or overwhelmed by the subject matter. However, it is worth noting that the daughter did not actually think her mother was ‘that sick’. Thus, conversations about ACP-related topics may not have happened anyway due to the daughter’s perception of her mother’s prognosis. Furthermore, the daughter had not participated in the actual ACP discussion, which might also have influenced her perspective on ACP.
Discussion
We have emphasised three different types of impact that ACP can have on patients and relatives: positive, negative and no impact. Hence, the study suggests that ACP carries the potential to improve communication and quality of life for patients and relatives, and also that ACP encompassed the risk of creating tension between patients and relatives or of being insignificant.
Ikonomidis and Singer14 call attention to the dilemma that while ACP is based on the highest ideals of respect for individual autonomy, the concept is flawed because of incorrect assumptions about the way people make decisions. ACP, Ikonomidis and Singer argue, is based on the conception of the individual as an autonomous, rational, independent agent, ‘disengaged’ from the social context. Rather, ACP must take into account that people do not make decisions in a vacuum, but are affected by a multitude of factors.14
In line with this understanding, numerous empirical studies have argued that patients’ and relatives’ attitudes towards ACP differ according to different ‘variables’. In particular, there has been increasing emphasis on the influence of culture and ethnicity on patient choices in EOL care in general and ACP in particular. These studies generally focus on the ways in which patients’ cultural and ethnic background affects their willingness to engage in ACP, for example, because of mistrust of the healthcare system or a preference for group/family decision-making in certain ethnic groups.15 ,16 Other studies have focused on the importance of gender in connection with ACP, for example, identifying gender-specific concerns regarding EOL care.17 Yet other studies have emphasised how factors such as sexuality (in particular, homosexuality and transgender),18 different diagnosis and prognosis,2 ,19 age,20 spirituality and religion21 and socioeconomic status22 affect uptake and attitudes towards and experiences of ACP. Overall, these studies all recommend that ACP needs tailoring with respect to the patient’s specific ‘variable’ (culture, gender, sexuality, etc).
All these studies show how ACP is not carried out in a vacuum, but rather is embedded in the context of the patient's and relatives’ lives on the basis on a variety of factors. It was thought-provoking to find that our small group of ethnically/culturally similar participants revealed such different attitudes towards and experiences of ACP. Along with the aforementioned studies, this suggests that it may be valuable not to see one particular ‘variable’ or factor as determining, but rather recognise that a variety of complex factors influence the impact of ACP. Even with the honourable goal of respecting, for example, cultural background or sexuality, patients and relatives should not be stereotyped. As noted by Chater and Tsai,23 “there is a wide variation of beliefs within cultures, and personal characteristics may be as important as cultural influences.” Similarly, it is questionable whether any single factor should be considered determining in terms of attitudes and impact of ACP.
Limitations of the study
The results of the study should be read in the light of its limitations. The study is based on a small sample, and, as in all qualitative research, it is difficult to generalise the findings beyond the participant group. Still, we find it interesting that such a small sample shows such variation.
Furthermore, it is often recommended that ACP is carried out repeatedly, as a process, over a period of time rather than as a single discussion.
Finally, this type of systematic discussion about EOL wishes and concerns is new to the Danish healthcare system and thus to Danish patients. Therefore, results may differ from the experiences of patients in societies where ACP-type discussions are more common (eg, the USA and Australia).
Clinical implications for practice
This study stresses the importance of awareness of the highly individual nature of preferences and needs of patients (and relatives) regarding communication about EOL care. Recommendations for practice therefore centre on the need for sensitive communication in relation to ACP, not just in relation to specific factors, for example, cultural background, but per se. Healthcare professionals need to tailor ACP according to the individual's unique perspective, values, concerns and preferences rather than imposing a predetermined standard or tick-box concept.
Also, the study highlights how the healthcare professional conducting the ACP discussion needs to understand the patient’s and relatives’ knowledge of the illness and their relationship and coping styles before entering a conversation that involves talking about death and dying, that is, some people may need more support and preparation than others.
Implications for future research
Future research needs to explore the perspectives of patients and relatives on the contextual factors influencing the uptake and impact of ACP. In particular, the effects on, and effects of, ACP on interpersonal relationships need to be better understood. Research also needs to focus on how ACP can be sensitised to different patients with different needs, and how relatives can best be included in ACP discussions.
Furthermore, more attention needs to be focused on the potential negative effects of ACP for both patients and relatives. In this connection, it would be beneficial to pay more attention to the principles underpinning ACP (eg, the concept of patient autonomy), and the practical implications of such underpinnings. In addition to this, the perspectives of relatives have to be studied more closely. In particular, for example, how can ACP be performed while also taking the autonomy of the relatives into account?
Conclusion
Our study explores the long-term impact ACP has had on a group of patients and relatives. Despite a small sample, the study reveals great diversity in patient and relative experiences of ACP, participants reporting both positive, negative and no effects.
Acknowledgments
Profound gratitude is extended to participating patients and relatives.
References
Footnotes
Contributors The first author carried out fieldwork under the guidance of the other authors. All authors contributed to the conception and design of the study as well as the analysis of the data. All authors have approved the final version.
Funding The study was funded by the Danish Cancer Society.
Competing interests None declared.
Ethics approval The Central Denmark Region Committees on Health Research Ethics and the Danish Data Protection Agency.
Provenance and peer review Not commissioned; externally peer reviewed.