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Abstract
Background Communication about the end of life is especially important in the family context, as patients and their families are considered as the care unit in palliative care. Open end-of-life communication can positively affect medical, psychological and relational outcomes during the dying process for patient and family. Regardless of the benefits of end-of-life conversations, many patients and their family caregivers speak little about relevant end-of-life issues.
Aim To identify barriers that hinder or influence the discussion of end-of-life issues in the family context.
Design A systematic mixed-method review according to Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines.
Data sources A systematic search of PsycInfo, CINAHL, PubMed and Web of Science was conducted and extended with a hand search. Peer-reviewed primary studies reporting on the barriers to or difficulties in end-of-life conversations experienced by terminally ill patients and/or family caregivers were included in this review.
Results 18 qualitative and two quantitative studies met the inclusion criteria. The experiences of n=205 patients and n=738 family caregivers were analysed qualitatively; n=293 patients and n=236 caregivers were surveyed in the questionnaire studies. Five overarching categories emerged from the extracted data: emotional, cognitive, communicative, relational and external processes can hinder end-of-life communication within the family. The most frequently reported barriers are emotional and cognitive processes such as protective buffering or belief in positive thinking.
Conclusions Research on end-of-life communication barriers in the family context is scarce. Further research should enhance the development of appropriate assessment tools and interventions to support families with the challenges experienced regarding end-of-life conversations.
- communication
- family management
- psychological care
- end of life care
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Introduction
A ‘good death’ and patient-centred care are vital aims in palliative care.1 2 Nevertheless, incongruences between patients’ wishes and reality are common. For instance, most wish to die at home, which is only the case in 10% to 35%.3 In palliative care, the patients and their families are perceived as the unit of care.4 Family members are most likely to be responsible for caregiving and decision-making at the end of life.5 Remarkably, surrogates only demonstrate low to moderate accuracy in predicting patients’ choices.6 Conversations in which patients can share their preferences as well as their worries are hence especially important within families.
End-of-life communication can be defined as all verbal and non-verbal interactions between the time of the terminal diagnosis and death.7 Badr and Taylor identify four main topics between patients with advanced lung cancer and their spouses: the quality of the relationship, relationship memories, planning for the future and problem solving.8 One important aspect can be advance care planning (ACP). ACP enables individuals to define goals and preferences for future medical treatment and care, to discuss those with family and healthcare providers, and to record and review these preferences if appropriate.9
Simply talking about those issues can have a great impact on the medical, psychological and relational outcomes of the end-of-life process. Open family communication is an indicator of higher congruence in care preferences10 and is associated with less aggressive medical care near death and earlier hospice referrals and hence better quality of life.11 Being unable to openly discuss a terminal diagnosis can lead to increased levels of negative feelings, uncertainty, lack of perceived control, lower self-esteem and other psychological problems in cancer patients.12
Furthermore, end-of-life conversations can have positive effects for family members (including all significant close persons). Since life-sustaining treatments are associated with a poorer quality of life and higher levels of family distress,11 simply knowing about the dying person’s values and preferences can be a relief and provide greater certainty. Bereavement adjustment and caregiver quality of life is better when end-of-life discussions take place.11 Open communication is associated with reduced caregiver burden13 and fewer feelings of guilt and regret after the loss.14
Regardless of the benefits, many patients and family caregivers barely speak about relevant end-of-life themes.13 15 Although patients are typically more willing to discuss their terminal illness with family members than with their physicians,6 16 communication takes place in less than half of the cases.16 In line with these findings, Gjerberg and colleagues found that only few nursing homes residents and their families had engaged in conversations about end-of-life care.17 Likewise, in a study by Fried and colleagues, 22.3% of the patients and 37.3% of the caregivers experienced severe communication difficulties.13
To provide professional support, it is critical to understand what difficulties are experienced when talking about end-of-life issues. Much of the literature within end-of-life care has focused on communication barriers with healthcare providers.18 19 Recently, some studies have explored the important role of family communication.20 21 To the best of our knowledge, no review exists that investigates communication barriers in the family context. Thus, the aim of this systematic review is to provide an overview of the communication challenges experienced by terminally ill or frail older persons and their families. The research question is ‘Which factors hinder open communication between patients and family caregivers about end-of-Life issues?’.
Methods
A mixed research synthesis was conducted as a type of systematic review aiming at the integration of qualitative and quantitative studies in a shared domain of empirical.20 An integrating design for mixed-methods reviews was used to analyse and synthesise the data. Thereby, data can be grouped by findings addressing the same phenomenon rather than by method.21 It was performed according to an adapted version of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) that focuses on criteria for systematic reviews of qualitative and quantitative evidence.22 The following stages of review were conducted: problem identification, literature search and study selection, data evaluation and quality assessment, data extraction and analysis, and presentation of synthesis.21
Search strategy
From April 2019 until November 2019, relevant electronic databases were systematically searched to identify eligible studies: PsycInfo, CINAHL, MEDLINE through PubMed and Web of Science (core collection). As the searches indicated that the number of relevant studies was small, no year limits were applied so searches dated from the inception of the databases. Free-text terms for searching titles, abstracts and keywords were combined with database-specific subject heading terms, following the structure of [end of life care] AND [family] AND [communication] AND [barriers]. The detailed search strategy for PubMed is exemplarily provided in table 1.
Search strategy PubMed
Study selection
The studies were selected regarding the empirical methodology, the topic of interest and the participants. The inclusion and exclusion criteria are presented in table 2. Papers focusing on cultural barriers were excluded to avoid confounding different approaches to investigate end-of-life communication barriers and to narrow the research focus. This also aimed at reducing the heterogeneity of study samples. All references were screened for the outlined eligibility criteria. The first selection was based on title and abstract. Second, the full texts of potentially eligible articles were reviewed. Any disagreements between the study’s authors were resolved by discussion.
Inclusion and exclusion criteria
Quality assessment
There is no globally accepted list of criteria to assess the quality of studies included in a mixed-methods review. We used a set of criteria developed by Slort and colleagues who conducted a systematic review to identify barriers and facilitators of general practitioner–patient communication in palliative care.18 They composed a list of 16 items and divided them in clarity of reporting and robustness of methods. For quantitative studies, the same set of criteria was used except for three criteria that were not applicable. Each criterion was rated ‘yes’ or ‘no’, with ‘no’ also assigned for insufficient information. The total quality score ranged from zero to 16 for qualitative studies and from zero to 13 for quantitative studies. Two independent researchers conducted the quality assessment. Any disagreements were resolved by discussion. There is no consensus about the minimal quality assessment score required for inclusion in a scientific review. Therefore, no article was excluded because of its low quality rating.
Data extraction
Study characteristics were extracted using the data extraction form, including authors’ details, country, year of publication, research question, research features (design aim, method of data collection), sample size and participant characteristics, the quality appraisal, and the definition and occurrence of end-of-life communication. To extract the data to be analysed in this review, the results sections of all studies were line-by-line coded with a focus on barriers or difficulties. In the case of the quantitative studies, factors that were significantly associated with the level of open communication were extracted.
Data analysis
The data analysis aimed at coding, categorising and summarising the extracted data into an integrated conclusion about the perceived difficulties. For the qualitative studies, the results sections were analysed by thematic synthesis in three steps according to Thomas and Harden: the free line-by-line coding of the result sections; the organisation of these ‘free codes’ into related areas to construct ‘descriptive’ themes; the development of ‘analytical’ themes.23 While coding the findings, new codes and concepts derive from the data. The initial codes were then organised in descriptive themes and synthesised in groups of codes with similar meanings. The descriptive themes were used to identify overarching categories of communication barriers. The relevant findings of both qualitative and quantitative primary studies were grouped into these categories according to patterns and themes. The analytical themes were developed by two of the researchers.
Results
Study characteristics
The search yielded 2470 potentially eligible records. In total, 1804 articles remained after duplicates were removed. After title and abstract review, 144 articles qualified for a further full-text review based on which another 124 articles were excluded (see figure 1). An additional hand search of the references led to the identification of further three articles.
Flow chart of study selection process. EoL, end of life.
Of the 20 included studies, there were two quantitative and 18 qualitative studies released between 2002 and 2019. While most of the research was conducted in the USA (n=14), the sample also covers studies from Australia, Canada, Sweden and Israel. The quantitative studies relied on questionnaires24 or relational and situational variables,25 whereas the qualitative studies used in-depth exploratory, (semi-)structured interviews or focus groups. In two cases, open-ended questions were qualitatively evaluated as part of a larger online survey.26 27
Four studies focused on the patient,25 28–30 eight studies explored the caregivers’ views24 26 27 31–35 and another eight studies examined both perspectives.8 15 36–41 Across the included qualitative studies, the experiences of n=205 patients and of n=738 caregivers were collected. There were 293 patients with a life-threatening illness25 and 236 caregivers of shortly deceased patients with cancer24 that were surveyed in the quantitative studies.
Meeting 12 out of 13 criteria according to the quality score, both quantitative studies showed high quality levels. The qualitative studies ranged from 9 to 14 out of 16 possible quality criteria. In most cases, quality score deduction resulted from limitations within the ‘robustness of study methods’ (see online supplementary table 1).
Supplemental material
Definitions of end-of-life communication
The conceptualisation of end-of-life communication differed between the studies and can roughly be divided in general family communication at the end of life, and talking specifically about end-of-life issues (see online supplementary table 2). Final conversations were defined by Keeley and Generous as all interactions from the moment of a terminal diagnosis to death.27 End-of-life communication goes beyond illness-related issues, including the relationship quality, shared memories, planning for the future and problem solving.8 However, most of the studies focus on talking about medical-related issues such as care preferences, prognosis or death-related concerns. Such communication occurred either in form of a structured ACP process with family members25 30 34 37 38 or broader, more informal discussions about the illness, eventual death and end-of-life preparation.24 27 28 31 32 36 39–41
Supplemental material
Occurrence of end-of-life communication
The level of open communication was found to be low to moderate, indicating significant communication difficulties (see online supplementary table 2). In Zhang and Siminoff’s study of 26 families, 65% experienced communication problems, 27% hardly talked about the terminal illness and 38% reported a communication breakdown.15 Badr and Taylor found that almost 68% of their participants had difficulty discussing prognosis, fears of death or funeral arrangements.8 Identifying barriers to end-of-life communication is thus crucial to understand what causes this variety of communication problems.
Difficulties in end-of-life communication in the family context
Based on the authors’ systematic study review, barriers to end-of-life communication in the family context can be categorised into five overarching themes: (1) emotional barriers, (2) cognitive barriers, (3) relational barriers, (4) communicative barriers and (5) external barriers. An overview of the results is provided in table 3.
Identified categories of barriers to end-of-life communication; identified themes; their prevalence in the original studies; numbers of original studies divided in patients’ and caregivers’ perspectives
(1) Emotional barriers
Mentioned in 75% of all studies, emotional factors were the most prevalent category of reasons for not discussing the end of life.
Desire to protect the other from difficult emotions 8 15 24 26 28–32 34 37 40: Family caregivers expressed their concern to protect the emotions of the dying8 15 26 30–32 40 and feared upsetting the patient given his/her frail physical or emotional state.34 While enduring worry, anger and fear faced with death, many caregivers concealed their emotions and avoided any conversation that could potentially evoke the patient’s anxiety or depression.24 From the patients’ perspective, an equally strong desire to protect the family from negative emotions could be noted.15 28–30 32 36 37 40 They did not want to burden their family with talking about dying,28–30 or with worries related to the illness and the future.29 30 Others shut down their thoughts and feelings to prevent emotional upset in the family15 or avoided end-of-life communication altogether, foreseeing emotional difficulties such as anger,32 sadness, avoidance, fear, shock and panic on the part of family members.29
The need to protect one-self from emotional discomfort 15 26 28–31 33 34 36 40: Many caregivers avoided the topic to protect both themselves as well as their relationship with the patient.31 33 34 McGrath found that fear surrounding death resulted in a ‘void of silence’ and avoidance behaviour such as not visiting the family member in the hospice.29 Likewise, patients were also reluctant to discuss dying as this topic invoked distress in them.28 30 36 They did not want others to ‘feel sorry’ or to ‘look down’ on them.15 Others, as Salander and Spetz showed, kept negative information to themselves as a way of dealing with anxiety and protecting themselves.40
Being in an already emotionally stressed state 15 24 29 32 33 37: Emotional reactions to caregiving correlated negatively with open communication (emotional exhaustion: r=−0.374, B=−0.227, p<0.001; depression: r=−0.335, B=−0.138, p<0.05).24 Communication challenges were often related to emotional overload.32 33 When family members became depressed, communication became even less possible.15 Feeling overwhelmed by disease symptoms and disease progression hindered effective ACP communication.37 In a study by McGrath, some hospice patients felt they could not deal with the emotional reactions of close others having already as much as they could cope with.29
General avoidance of emotions 15 27 29 31 40: Fear of dying and difficulties of talking about it could result in silence and avoidance behaviour.29 Caughlin and colleagues found that the emotional toll led the majority of adult children of patients with advanced lung cancer to avoid end-of-life conversations (eg, conversations about the prognosis or the emotional impact of the parent’s impending death, telling the parent how much they loved them).31 Caregivers tried to be strong, not to show sadness or fear, and to control their feelings in general.27 From the patients’ perspective, talking about serious illnesses and dying was considered emotional and difficult and was therefore in many cases avoided.15 29 Some patients felt that it was easier to cope with the disease if its negative impact on the rest of the family was limited.40
Fear of death and dying 15 24 29 36: A negative correlation between the level of open communication and the caregivers’ fear of death and dying was found (r=−0.21, p<0.01).24 Fears of treatment futility and death seem to affect discussions about the cancer experience and future treatment15 and provoke avoidance behaviour and the choice not to deal with the issue of dying.29 Frail older adults also named fear of death as an important barrier to discuss end-of-life preparation.36
(2) Cognitive barriers
The category of cognitive barriers describes all factors hindering open end-of-life communication due to beliefs, cognitions and attitudes and are mentioned in most of the included studies (16 out of 20).
Denial of serious illness and hope for cure 27 29 32 34 37–40: Some caregivers struggled to accept the finality of death, consequently eschewing to talk about death.27 32 37 In some cases, denial of the severity of the disease led to an eagerness to ‘just go on living’ and pretend everything was fine.40 Some caregivers experienced the denial of diagnosis and associated avoidance behaviour by the patient as a barrier to initiate conversations.34 Others avoided end-of-life communication due to concerns that the patient did neither know nor would be able to accept the severity of the illness if confronted with the facts.32 This fear is supported by the findings of Salander and Spetz: some patients with malignant gliomas indeed continued to consider themselves as healthy.40 In these cases, ACP was considered unnecessary because of the patients’ belief not to be at that stage in the illness trajectory yet.37 40 McGrath found that patients’ desire for communication was directly related to their degree of awareness and acceptance of death.29 Other studies demonstrate how patients’ varying degrees of expectations about treatment, illness and prognosis impact end-of-life communication.38 39 A focus on cure and recovery or maintenance of the current level of health can hinder open communication.38–40 For example, a strong hope for ‘last minute cure’ both by patients and caregivers was found to prevent medical care planning in a study on Parkinson diseases.37
Belief in positive thinking and remaining positive and optimistic 8 15 28 31 34 38 40: Many caregivers stressed the importance of remaining positive and hopeful instead of dwelling on death, thus eschewing any mortality-related thoughts.8 28 31 34 They preferred to focus on living with, rather than dying from the illness. Accordingly, these caregivers were convinced that end-of-life discussions would damage the delicate balance between a focus on life versus death.34 Such a positive outlook may also be seen as a way of coping with anxiety.40 In some cases, there was even a fundamental belief that positive thinking causes tumours to shrink and cancer cells to die.15 Some patients understood keeping positive as vital to cope and felt that any ACP discussions would be a concession that their treatment was unsuccessful.38 In other cases, optimism was seen as a crucial protective mechanism by both patients and family members which prevented them from ACP engagement.38
Lack of readiness 28–30 32 34 37 39 40 28–30 32 34 37 39 40: Some caregivers stated they were not ready or were unable to face the prognostic information.32 Others struggled to initiate ACP conversations when the patient seemed not to be prepared to do so,37 especially if the denial of diagnosis and related avoidance behaviour were predominant.34 As a result, caregivers either abandoned the topic of end of life altogether, or reacted with a strategy of delay and postponement (eg, waiting for a further decline in health).39 Patients, on the other hand, were often neither ready to face the prognostic information,32 nor to open up to their family.28 For example, patients with malignant gliomas refused to share their thoughts, worries and anxieties and reacted with annoyance to ACP initiatives by their family members.40 McGrath establishes a direct correlation between patients’ desire for end-of-life communication and their degree of acceptance of death.29 Some patients also wished to wait for a further decline in their health status before addressing end-of-life topics.27 In addition, both caregivers and patients mentioned the crucial role of timing.29 For instance, patients with end-stage renal disease preferred ACP conversations to take place a few months after starting dialysis in order to give them time to adjust to their illness, but before they were too ill and could no longer participate in ACP.30
Belief that talking about dying enhances the dying process 8 15 34 38: Thoughts about cancer recurrence, treatment termination and death were considered to be self-destructive by some caregivers.15 Negative thinking was believed to weaken the immune system and encourage tumour growth.15 Family caregivers feared that talking about the prognosis would affect the patient’s will to fight the disease.8 34 Patients feared likewise that talking about future medical decisions would equal a concession that their treatment would be unsuccessful.38
Perceiving ACP as irrelevant/incomplete understanding of ACP 30 36–39 41: Booker and colleagues found limited understanding of ACP as well as a lack of knowledge, education or experience of ACP in the context of haematological malignancy.38 The concept of ACP and treatment-related mortality remained conceptual, and difficult to understand for many participants.38 Similarly, participants with advanced heart failure were limited in their understanding of the consequences of illness and decided to wait until further decline.39 Patients with Parkinson disease and their caregivers equated ACP with completing advance directives and believed that the document alone was sufficient, which prevented them from further discussions.37 Similar results were found in nursing home residents: the assumption that preferences were already known because of existing advance directives created the notion that a conversation was not needed.41 Frail older and seriously ill persons perceived ACP as irrelevant because of their trust in their family,30 in God or the physician to make the decisions for them.30 36
Lack of awareness of prognosis 29 32 37 40: Concerns that the other person did not know or would not be able to accept the severity of the illness were perceived as a barrier on both sides.32 Several studies describe patients’ lack of awareness as an important reason not to discuss future medical planning.29 32 37 40 The desire to talk was directly related to the degree of their awareness and acceptance of death.29 In some cases, ACP was considered unnecessary because of patients’ belief not to be at that stage in the illness trajectory37 or to be healthy despite their diagnosis.40
Self-efficacy 24 31: A quantitative examination of caregiver characteristics showed a significant association of self-efficacy and the level of open communication (r=0.238, B=0.306, p<0.05).24 Likewise, in the qualitative study of Caughlin and colleagues, participants avoided communication because of a lack of efficacy (eg, belief not to be able to discuss these topics).31
Belief that talking about death makes it more real 29 31: Discussing the impending possibility of profound loss for both the patients and their families was perceived too confronting.29 Caregivers of patients with advanced lung cancer feared that discussing death would make it a reality, which would be too much to bear.31
Additional reasons for avoidance were each mentioned in only one of the included articles. Uncertainty about future care preferences was named as a barrier to discuss end-of-life care by frail older adults.36 Schubert et al found that previous discussions were perceived to be enough,34 so that additional conversations would not add to caregivers’ preparedness for decision-making, convinced that any changes in wishes would be expressed. Also, prior caregiving experience was considered as a sufficient background for dealing with potential situations.34 Patients with malignant gliomas and their spouses stated narrow information needs and focused on the treatment and way of living rather than end-of-life questions.40
(3) Relational barriers
The category of relational barriers contains aggravating factors in the patient–caregiver relationship. Relational barriers are discussed in 14 of the included studies.
General family functioning and family dynamics 25 26 30 33 35 36 40: Higher levels of family functioning (OR 2.79) and emotional support from spouses (OR 4.34) are significantly increasing the odds of having discussions.25 In contrast, a lack of intimacy or uncertainty about the relationship are reasons for avoidance during final conversations.26 Stone and colleagues reported specific challenges that participants faced in negotiating familial relationships when confronted with end-of-life issues.33 As a result of patients’ refusal to share their thoughts, caregivers felt excluded and forbidden to deal with the situation appropriately.40 Their spouses with malignant gliomas found it sometimes easier to cope with the disease if its negative impact on the family was limited.40 Having trust in the family was often crucial for leaving all decision-making for future care to others.30 36 Caregivers needed to provide care within existing hierarchy and patterns which could be a barrier to participatory family discussions.35
Differences in values or opinions 15 26 32 33 37 40: Belief and value differences (eg, family differences regarding religion)26 or differing hopes and fears about the patient’s illness32 can be challenging. Different standards of appropriateness (eg, what is helpful to cope with illness-related and death-related issues) presented a significant communication challenge in some cases.33 In Zhang and Siminoff’s investigation, 20 families (77%) reported discordance on a wide range of treatment issues.15 Lum et al observed an incompatibility of caregivers’ and patients’ ACP preferences and therefore difficulties to respect the patient’s will in some families.37 Some caregivers reported different understandings of how to cope or talk about the situation which led to caregivers and patients drifting away from each other.40 A fear of facing resistance when talking about medical care planning was also mentioned by patients with Parkinson disease and their caregivers.37
Maintaining family standards and roles (conformity) 27 28 31 33–35: Caregivers wanted to remain respectful to their ill family member by not bringing up something offensive, to be strong and not showing any fear or sadness.27 The goal of adhering to the family’s standards was sometimes considered more important than emotional connection or catharsis.31 The complex and conflicting roles of caregiving children created communication problems in the context of lung cancer.33 It was difficult for family members to initiate end-of-life conversations when they thought that the patient’s previous role was already under strain.34 Patients with advanced cancer felt that talking about distress would undermine their status and avoiding end-of-life related issues was a way to remain self-reliant.28 Caregivers who held a hierarchical role within the family felt obligated to fulfil their traditional family role and prioritised established communication patterns over their need for ACP discussions.35
(4) Communicative barriers
This category of barrier is rooted in the lack of communication skills or communication inherent factors. These factors are described in eight original studies.27 29 31 32 34 37 40 41
Not knowing how to talk about end-of-life care or death 29 31 32 34 41: Some caregivers in Caughlin et al’s study believed to be unable to discuss end-of-life topics satisfactorily.31 Difficulties to know the right thing to say and uncertainty what to discuss were reported in Keeley and Generous’s online survey.27 Caregivers reported that discomfort with death and dying inhibited conversations and was cited by 22.8% of those caregivers not reporting discussions about medical wishes following an ACP event.34 Not knowing what to say is complemented by worries that others would not know what to say if end-of-life related topics were raised.29 Nursing home residents and their family caregivers perceived talking about the end-of-life as atypical or unpleasant.41
Fear of rejection 32 37 40 41: Concerns that the other person would not be able to accept the severity of the illness functioned as communication barrier.32 The fear to be rejected because of differences in hopes and fears,32 the fear of facing resistance when talking about medical care planning,37 and the uncertainty about the other’s position,40 as well as being unsure how much to encourage the patient to talk about ACP37 hindered open communication. Nursing home were concerned of being judged when initiating discussions about end-of-life preferences.41
Permission to talk 29 34: Caregivers tended to wait for the patient to initiate or permit open discussions of end-of-life topics.34 On the other side, patients felt uncomfortable with encouraging others to talk about their illness and the impending death.29
Talking not the preferred option 29 40: Some hospice patients stated that talking was not their preferred option and that they had a strong need for personal space.29 Spouses of patients with malignant gliomas had sometimes to accept the silent and intrapersonal coping preferences, resulting in spouses no longer pushing for conversations.40 Some couples stated that an implicitly shared understanding as well as a mutual acknowledgement of the situation made more explicit communication unnecessary.40
Existential understanding gap 29: Hospice patients indicated that others were not able to understand or satisfactorily talk about the dying experience unless they had a similar life situation.
(5) External barriers
Factors rooted in external circumstances and conditions emerged in nine original studies.24 26 29 30 33 34 36 37 40
Condition of the dying 24 26 33 34 37 40: A negative correlation between patients’ perceived functioning or physical suffering and the level of open communication was found (r=−0.17, p<0.05).24 The condition of the dying (eg, cognitive impairments, fatigue or weakness,26 discomfort34) or physical and mental changes related to illness (eg, loss of ability to speak33 40; decline in cognitive functions32 33 37 40; apathy39; feeling overwhelmed by symptoms37; limited understanding of the situation40) were found to be important barriers experienced by both patients and caregivers.
External circumstances 29 30 33 34 36: Adult children stated that the geographical distance made communicating difficult and additionally stressful.33 36 Infrequent family visits36 and time constraints34 were barriers from the caregivers’ perspective. Older adults explained that their family rarely being together and not finding time hindered discussions about end-of-life preparation.36 Some hospice patients experienced few or no opportunities to share their thoughts because people kept away.29 The preference to talk at home rather than at a healthcare facility about ACP was expressed by patients with end-stage renal disease.30
Caregivers’ characteristics 24: The caregivers’ level of education and their religious beliefs were significantly associated with their level of open communication.
Not having any close person 41: For some nursing home residents, not having a trusted close person was a reason not to share end-of-life related concerns.
Discussion
Main results of the review
This review included 18 qualitative and two quantitative studies focusing on difficulties in end-of-life communication in the family context. Five overarching factors emerged from the data: emotional, cognitive, communicative, relational and external barriers. Across the studies, the most frequently reported difficulties were emotional or cognitive processes.
Comparison with theoretical frameworks and existing literature
Problematic Integration Theory (PIT) provides a framework for understanding many of the barriers outlined in this review. According to PIT, humans need probabilistic (eg, expectations) and evaluative (eg, valence) orientations to make sense of specific situations.42 43 This is also evident in end-of-life communication: probabilistic assessments of health status and evaluative perceptions of quality of life determine patients’ choices regarding end-of-life conversations.44 Integrative dilemmas arise when a misfit of probabilistic and evaluative orientations occurs.42 43 Four basic forms of PI can be identified and are helpful to explain many of the identified barriers45: divergence, ambiguity, ambivalence and impossibility. In the case of divergence, expectations and desires are at odds,42 43 for example, when someone values the importance of end-of-life communication but has low expectations to be able to engage in discussions with family members (eg, Low self-efficacy, Lack of readiness or Fear of rejection). Ambiguity arises when uncertainty regarding probability prevails. At the end of life, great uncertainty can dominate communication within the family. Barriers identified in accordance with ambiguity are among others Lack of awareness of prognosis, Uncertainty about future care preferences or Incomplete understanding of ACP. Ambivalence describes a situation of equally (positively or negatively) valued but mutually exclusive choices.42 43 In this context, ambivalence may be found when the desire to protect the other or oneself is evaluated equally important as the need for discussions. Moreover, ACP can imply complex and often conflicting decisions (eg, life-prolonging treatment vs reduction of treatment-related burden). Impossibility refers to unattainable desires42 and lack of probability.44 This corresponds with cognitive barriers as Denial of serious illness, Hope for cure or Belief in positive thinking where the probability of death and the severity of illness are negated, and a low probability assessment is coupled with a strong desire to be healthy. Not least, external barriers such as Condition of the dying, External circumstances and Not having any close person fit into the category of impossibility.
This article extends the review of the importance of family communication and decision-making at the end of life from Wallace by focusing on and systematically categorising the experienced difficulties.45 There is little knowledge about end-of-life conversations in families and yet no systematic attempt to assess these factors. Previous studies have developed questionnaires to examine communication challenges in relation to cancer diagnoses and treatment,24 especially within the professional context.46 However, there is no assessment tool to assess the difficulties and reasons for avoiding discussing end-of-life issues beyond cancer-related discussions.
Compared with communication barriers in the professional context, there are similarities as well as differences. Similar is the influence of cognitive factors (beliefs and attitudes), which seem to play a dominant role in both contexts. Moreover, the most frequently reported barriers between patients and general practitioners are lack of time, ambivalence or unwillingness to know about the prognosis from the patient’s side, and the general practitioner not sharing all details about the diagnosis or prognosis.18 Differences can be seen in the influence of emotional and relational barriers: While emotional factors and relational dynamics play a predominant role in end-of-life communication within families, these factors seem to be less aggravating in the professional context.
Study strengths and limitations
To our knowledge, this is the first systematic review focusing on difficulties in end-of-life communication within families. It was conducted according to an adapted PRISMA checklist and a sensitive search strategy was applied for the review.
A mixed-method synthesis was used to compare the results across studies and draw conclusions despite a broad variety of different methods and a lack of a commonly accepted definition of what it means to be at the end of life or to have end-of-life conversations. The necessity of a mixed-method review underlines the dearth of rigorous quantitative and qualitative studies. It therefore remains difficult to draw firm conclusions and provide recommendations which are representative and based on clear concepts and sound methodology. Despite all methodological and conceptual differences and uncertainties, this review provides empirical evidence for commonly experienced difficulties. It integrates the experiences of a high quantity of terminally ill patients and family caregivers in one combined and categorised overview.
One weakness of the review may be the focus on barriers and difficulties, leaving out the substantial part of families that find beneficial ways of dealing with these emotionally challenging conversations. It may be as important to investigate facilitators to end-of-life communication to develop interventions and prevent communicative breakdowns in families with a terminally ill family member.
Recommendations for further research
Further research is needed to investigate the impact of open communication on palliative care outcomes, quality of life for patients and caregivers, and bereavement adjustment. Assessment tools to identify these difficulties should be developed. A respective questionnaire could be based on the factors identified in this review. The development of interventions to support families in end-of-life discussions by addressing and modifying the individual barriers would be a valuable and worthwhile attempt. Research should further investigate which facilitators enhance the discussion of end-of-life issues to consider them in supporting interventions. This review did not find substantial differences between patients with a clear terminal prognosis (eg, cancer) and patients who were frail. This is despite the fact that frailty is often associated with greater death acceptance because of an expected decline in health.47 Further research should investigate differences in communication barriers between these different end-of-life conditions.
Implications for practice
Families with a seriously ill member can experience a variety of communication challenges up to communication breakdowns. Emotional processes like mutual protective buffering or the avoidance of strong emotions can hinder open discussions between family members. Patients’ and caregivers’ beliefs and attitudes can strongly influence how they talk about the illness and dying. Professionals in palliative care should be aware of those commonly experienced challenges and provide support when these conversations are wanted or needed. The wish to protect each other and the fear of overwhelming emotions should be validated and valued. Psychological interventions can help families to deal with these emotional challenges. Cognitive barriers should be addressed and modified if necessary. The presented categorisation of frequent barriers can be a useful tool to explore, name and validate the experienced difficulties. Information about the use and the options of end-of-life discussions should be provided. A structured approach to end-of-life discussions like ACP can be helpful to talk about their values, fears and wishes concerning palliative care and future medical decisions.9 Interventions that target patients and caregivers may be more effective in removing barriers than interventions that focus either on the patient or the caregivers.48 Helping families to share their end-of-life related concerns may enhance the feeling of being supported, reduce the sense of loneliness and isolation, and affirm family bonds.29
Conclusion
Reliable research focusing on the experiences of terminally ill persons and their families concerning end-of-life related conversations is scarce. Nevertheless, the present review provides evidence of the commonly perceived barriers and difficulties in end-of-life communication within families. Emotional (eg, mutual protective buffering) and cognitive processes (eg, ‘not yet’ attitude) were the most frequently reported factors that hinder end-of-life discussions. Additional difficulties were communicative, relational or external barriers. Further research should continue to deepen the literature’s knowledge of these factors, as well as focus on facilitating factors. Combined, these findings could form the foundation for the development of assessment tools and interventions to provide solid and individually adaptable professional support.
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References
Footnotes
Contributors KN, PvB, WR and CS contributed to the study design. KN and PvB designed the search strategy. KN and PvB screened abstracts, extracted data and assessed evidence quality. KN and PvB analysed and interpreted the data. KN and PvB drafted the manuscript. NL, CS and WR provided critical feedback and revisions on the manuscript. All authors approved the final draft for submission. KN and PvB are responsible for the overall content of the manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.