Abstract
Context
The End of Life Care Strategy for England highlights effective communication between patients and professionals as key to facilitating patient involvement in advance care planning. The strategy emphasizes that, currently, communication in patients with noncancer life-limiting conditions is likely to be inadequate, and research has identified that patients with chronic obstructive pulmonary disease and heart failure have a poor understanding of their condition.
Objectives
To identify existing interventions of patient-professional communication developed for life-limiting conditions and explore the applicability of interventions developed within a cancer framework to other diagnostic groups.
Methods
A comprehensive literature review of studies describing communication interventions for patients receiving end-of-life care was undertaken. Ten electronic databases were searched. Inclusion criteria were all English language studies relating to patient-professional communication interventions for patients with life-limiting conditions receiving end-of-life care.
Results
Of the 755 articles initially identified, 16 met the inclusion criteria. Three core themes emerged from the synthesis of the literature: using education to enhance professional communication skills, using communication to improve patient understanding, and using communication skills to facilitate advance care planning.
Conclusion
Although limited, evidence relating to the development and evaluation of communication interventions for patients with life-limiting illnesses would suggest that a successful intervention should include combined components of training, patient discussion, and education. In a context of limited resources and an increasing number of patients living and dying with chronic life-limiting conditions, the need for appropriate and effective communication strategies should be seen as a priority for both research and policy.
Key Words
Introduction
The End of Life Care Strategy (ELCS) for England
1
promises that all patients with advanced life-limiting illness will have the opportunity to participate in advance care planning (ACP). It advocates the extension of communication models developed in cancer care to other conditions as a means of addressing current deficiencies in care. Within the field of oncology, it is now a requirement for any U.K. health professional who is a member of a multidisciplinary team to attend a recognized, accredited advanced communication skills course. Despite these advances in cancer communication, research has identified a number of difficulties with applying this approach to patients with other conditions. In heart failure (HF) and chronic obstructive pulmonary disease (COPD), patients often have little awareness that they have a life-limiting illness, meaning that there is no clear way for professionals to discuss prognosis and ACP.2
, 3
Dying trajectories in conditions other than cancer are less predictable,1
leaving professionals unwilling to enter into prognostic discussions.2
, 3
Death now typically occurs in old age when limited available evidence indicates that information needs may be different because of both cohort and age effects.4
, 5
Indeed, there is evidence that giving health information to those who do not want it can cause undue anxiety and distress.6
The ELCS identifies that, in the absence of open discussions of this type, planning care according to patient preference is “difficult or impossible” and that people dying from conditions other than cancer are particularly disadvantaged in terms of their ability to participate in ACP.1
These findings are supported by research undertaken in two of the largest noncancer patient groups, HF and COPD.
7
, 8
Explorations of patient, carer, and health professional perspectives found that there is virtually no ACP being undertaken with these patient groups.British Heart Foundation (BHF). Coronary Heart Disease Statistics, 2010 Available from http://www.bhf.org.uk/publications/view-publication.aspx?ps=1001546. Accessed April 12, 2011.
2
, 3
It can be concluded that there is “an urgent need to identify strategies to enhance patient-professional communication if the objective of ELCS to offer all patients the opportunity to participate in ACP is to be met.”3
The risks of ACP not being undertaken also have been identified, namely, inappropriate hospitalizations and use of urgent care during the end-of-life period; patients receiving care and dying in a place not of their choosing; patients experiencing unwanted interventions before death; and increased anxiety among both patients and their families as a result of inadequate information provision about their condition.9
Similar findings have been shown in the U.S., where the Department of Health and Human Services has summarized a range of research indicating that, although 18%–36% of the adult population had completed an advance directive (AD), rates of completion for those with serious medical conditions were only slightly higher. Physicians are often unaware that their patients had completed an AD, and most end-of-life decision making occurs in ad hoc interactions between patients, family members, and doctors. Much of the care in intensive care units (where many of the challenges underpinning the legislation such as “do not resuscitate” instructions are most likely to be manifested) does not conform to patients' ADs. Also, residents of nursing homes are most likely to have ADs, but the process of transfer from an established nursing home placement to another treatment setting, characteristic of many patients' end-of-life care experience, is accompanied by a possibility that the new setting does not know about or act on the AD that is in place.
10
U.S. Department of Health and Human Services. Advanced directives and advance care planning: Report to Congress. 2008. Available from http://aspe.hhs.gov/daltcp/reports/2008/ADCongRpt.htm. Accessed March 18, 2011.
There is a wide body of literature available that describes end-of-life communication skills and techniques for both physicians and nurses.
11
, 12
Research on patient-professional communication about end-of-life issues includes studies based on survey data exploring strategies for communication13
and studies that explore the effectiveness of communication interventions in cancer.14
, 15
The overall aim of this comprehensive review of the literature was to identify existing interventions of patient-professional communication developed for life-limiting conditions and explore the applicability of interventions developed within a cancer framework to other diagnostic groups.Methods
This literature review was carried out following the principles of a systematic narrative review search. However, resource limitations prevented the translation of non-English language articles/grey unpublished literature. The review attempts to identify all the key published articles. Searches of the following databases were performed: CINAHL, Embase, MEDLINE, ASSIA, Cochrane Reviews, Cochrane Clinical Trials, Cochrane Technology Assessments, Cochrane Economic Evaluations, Citation Indexes (through Web of Science), and PsycINFO.
The search aimed to identify all the studies evaluating or developing interventions that related to communication about end-of-life issues with those who have life-limiting illnesses. The searches were conducted in February and March 2010. The following search terms were used: “Heart failure OR Chronic Obstructive Pulmonary Disease/COPD OR neoplasms/cancer OR terminally ill OR critical illness OR life-limiting OR critical illness OR renal OR dementia AND communication/communication barriers OR comprehension OR decision making AND ACP OR patient education as topic OR patient education handout OR teaching materials OR living will AND ACP OR terminal care OR palliative care OR life support care OR hospice care OR end of life care OR supportive care.” Appropriate wildcards were inserted to search for word ending truncations where necessary.
Articles had to meet the following criteria to be selected for the review: 1) describe original data; 2) be written in English; 3) refer specifically to palliative care, end-of-life care, terminal care, or supportive care; 4) focus on communication interventions to enhance ACP for health care professionals; and 5) include all life-limiting conditions.
After the extraction of the literature, two researchers independently evaluated the abstracts; in cases where there was disagreement, consensus was reached by discussion. After this consensus, core themes were identified from the selected articles. Because of the developing nature of evidence-based end-of-life communication skills training, it was decided that a conceptual model of communication to identify themes might be too limiting. Instead, a process of extracting evidence from a range of articles facilitated a less restrictive approach to exploring the current evidence base. Hawker et al.
16
suggest that an approach that incorporates inclusion of articles from a range of research methods and approaches can broaden the overall evidence available.Results
In total, 755 articles were identified. Of these, 577 were excluded after title sifting, a further 157 were excluded after abstract screening, and five more were excluded after full-text reviewing. The articles were excluded as they did not specifically refer to patients with life-limiting conditions, patient-professional communication, or communication interventions. The remaining 16 selected publications examined patient-professional communication interventions for patients with life-limiting conditions (Table 1).
Table 1Details of Included Articles
| Author and Year | Aims | Participants/Sample | Setting | Method/Intervention | Relevant Findings |
|---|---|---|---|---|---|
| Alexander et al. (2006) 21 | To evaluate the effect of a short course to improve residents' communication skills delivering bad news and eliciting patients' preferences for EOL care | 56 medical residents participating in ambulatory care rotation | Palliative care educational retreat (U.S.) | Prospective trial involving two-day training course comprising small group teaching with lecture, discussion, and role play. Assessment via audio-recorded standardized patient encounters before and after receiving intervention | Improvement in observed delivery of bad news (specifically information giving and responding to emotional cues). No improvement in discussion of patient preferences for EOL treatment; other improvements in specific skills including discussing probability, presenting clinical scenarios, and asking about prior experience with EOL decision making |
| Barnes et al. (2007) 27 | To explore the acceptability of an interview schedule designed to encourage conversations regarding future care and explore the suitability of such discussions and inquire about their possible timing, nature, and impact | 22 palliative care and oncology patients, relatives, and user group members | Academic department (U.K.) | Qualitative focus groups to discuss an ACP interview schedule | Timing of ACP discussions will influence acceptability and effect, best initiated after recurrence of a disease, discussion initiator should be skilled in responding to patient cues, should enable patient to close down topic, avoid dwelling too much on EOL, ACP should take place over a number of meetings with a trained professional with sufficient time to answer questions, discussions should be tailored to the individual and avoid destroying hope, ADs to refuse treatment should be part of a broader conversation and patients should have the opportunity to change their minds |
| Briggs et al. (2004) 29 | To assess the feasibility of a patient-centered ACP approach to patients with chronic illnesses and their surrogates with respect to promotion of shared decision-making outcomes—congruence between patient and surrogate, patient's decisional conflict, and knowledge of ACP | 27 patients in heart failure, renal dialysis, and cardiovascular surgery clinics | Heart failure, renal dialysis, and cardiovascular surgery clinics (U.S.) | Pilot experimental design involving a one-hour patient-centered ACP interview including a statement of treatment preference, knowledge of ACP, quality of patient-clinician communication, and decisional conflict scale. Usual care was delivered to control group. | Experimental group showed improvement in decision making for future medical treatment, greater satisfaction with decision-making process, more satisfaction with the quality of communication, and less decisional conflict |
| Clayton et al. (2007) 17 | To determine whether provision of a QPL influences advanced cancer patients'/carers' questions and discussion of topics relevant to EOL care during consultations with palliative care physician | 174 advanced cancer patients and carers | Outpatient specialist palliative care services (Australia) | Randomized controlled trial. QPL given before consultation to test total number of patient questions during consultation, total number of items discussed and patients'/caregivers' questions about nine individual topics covered by QPL, achievement of patient information preferences, physician satisfaction with communication during consultation and consultation duration. Standard consultation delivered to control group. | Discussion of more issues covered by QPL, increase in number of prognostic questions asked, increase in number of questions asked, fewer unmet information needs about the future |
| Clayton et al. (2005) 18 | To explore by whom, how, and when discussions about prognosis and EOL issues should be initiated with terminally ill patients and the context in which these issues can be optimally discussed | 65 participants as follows: 19 patients with life-limiting illness attending palliative care services and 24 of their carers and 22 palliative care health professionals | Academic department (Australia) | Qualitative focus groups and in-depth interviews | Wait for patient/carer to raise the topic, all palliative care patients/carers should be offered opportunity to discuss the future, HCPs should initiate discussions when patients/carers need to know, HCPs should initiate discussion when patients/carers seem ready, importance of relationship with HCP, clarification of patients'/carers' understanding and how much detail they want, negotiating who should be present during the discussion and who should deliver the information |
| Heffner and Barbieri (2001) 19 | To determine the effect of advance care education provided to patients enrolled in cardiovascular rehabilitation programs and assess patients' acceptance of the educational program | 284 patients enrolled in cardiovascular rehabilitation programs | Cardiovascular rehabilitation programs (U.S.) | Prospective randomized controlled trial involving two questionnaires six months apart plus an education program relating to ACP. Control group received the two questionnaires but not the education program. | In both groups, physicians had more understanding of EOL issues; both groups had more discussion about ADs and life support care. Both groups created more living wills and power of attorney for health care. Neither increased in confidence. |
| Heffner et al. (1997) 20 | To examine the effectiveness of pulmonary rehabilitation programs in educating patients about the importance of ADs | 93 patients with chronic lung conditions | Outpatient pulmonary rehabilitation program (U.S.) | Prospective controlled intervention study assessing the effectiveness of educational workshop on ADs and other EOL topics. Usual care delivered to control group. | Completion of a power of attorney, increase in AD discussions, initiation of life-support discussions, patient assurance that physician understood preferences |
| Johnson and Nelson (2008) 31 | To determine the acceptability and understanding of a patient information leaflet about CPR and seek patients' views on communication about resuscitation | Six hospice inpatients and day unit patients with advanced cancer | Hospice (U.K.) | Qualitative semistructured interviews analyzed using interpretative phenomenological analysis for emergent themes | Leaflet was acceptable but interpreted in the context of patients' understanding of illness and prognosis; leaflet alone is not a reliable method of communicating resuscitation policy—follow up with opportunity to ask questions; realistic information about prognosis and risks of CPR allows patients to make informed decisions. Preference not to discuss must be respected |
| SUPPORT Investigators (1995) 28 | To improve EOL decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying | 9105 hospital patients with a life-limiting illness | Teaching hospitals (U.S.) | Prospective observational study. Physicians in intervention group received estimates of likelihood of six-month survival for every day up to six months, outcomes of CPR and functional disability at two months. A specially trained nurse had multiple contacts with the patient, family, physician, and hospital staff to elicit preferences, improve understanding of outcomes, encourage attention to pain control, and facilitate ACP and patient-physician communication. Usual care delivered to control group. | No improvement in communication and no improvement in do not resuscitate orders |
| Lenzi et al. (2005) 22 | To describe the design and evaluation of a workshop for oncology fellows that combined lectures, interviews with simulated patients, role-playing, and exercises encouraging reflection and introspection | 17 cancer oncology fellows | Academic department (U.S.) | Evaluation of a training course including general communication skills, handling emotions, breaking bad news, denial and hope, transitions to EOL care, informed consent, dealing with loss and grief | Knowledge and self-efficacy improved after the course |
| Menkin (2007) 25 | To describe the development of the Go Wish cards and report on diverse cases in which they have been useful | Assisted-living residents with impaired vision/hearing/memory | Various (U.S.) | Qualitative tool development involving a pack of cards with examples of what may be important to patients who are nearing the end of life | Describes case studies where the Go Wish cards have been used successfully in acute care settings with palliative care patients to initiate end-of-life discussions, patient preferences for care and issues relating to death and dying |
| Newton et al. (2009) 32 | To describe the process, outcome, and impact of the introduction of an ACP into community inpatient settings | Cancer patients in community and inpatient settings | Various (U.K.) | Qualitative tool development of an ACP incorporating the preferred place of care document | Use of tool increased awareness of allowing the patient and carer to have their voice heard and views expressed |
| Norlander and McSteen (2000) 26 | To present a definition of ACP, why it is an important model for facilitating a discussion, suggestions for overcoming barriers and tools to assist nurses in feeling comfortable integrating the subject into daily practice | Patients with a life-limiting illness | Various (U.S.) | Qualitative tool development involving discussion carried out in the home: patient understanding of illness, patient's personal experiences with death, patient's goals and values, family support of patient goals and values, empowering patients to communicate with physicians. Delivered by home care nurses | Describes a case study where the “Kitchen Table Discussion” tool has been used effectively with an oxygen-dependent COPD patient. The aim of the tool is to not only improve patient-professional communication but also improve patients' understanding of their illness, give them a voice to express their needs and concerns and support their goals and values |
| Runkle et al. (2008) 23 | To determine whether attending a communication skills workshop focused on ACP, shifting focus to palliative care, personal grief, managing anger, and culture and communication result in changes in attitudes and knowledge | Clinicians | Nonprofit health maintenance organization (U.S.) | Evaluation of a workshop using The Four Habits Approach to Effective Clinical Communication (three×two-hour sessions or one×eight-hour session) | Significant changes in knowledge, attitudes, and intent to change |
| Schwartz et al. (2002) 30 | To evaluate the short-term clinical utility of early ACP and assess the feasibility of performing a larger prospective study to document long-term outcomes | 61 ambulatory geriatric patients | Unknown (U.S.) | Randomized controlled trial to evaluate the short-term clinical utility of early ACP using discussion of ACP with a trained nurse facilitator | Higher congruence between patients and professionals in their understanding of patients' EOL preferences, increase in patient knowledge about ACP, intervention patients more willing to undergo life-sustaining treatments for incurable progressive disease, less willing to tolerate poor health states |
| Wilkinson et al. (2003) 24 | To evaluate the effectiveness of a training program offered to palliative care nurses | 108 cancer/palliative care nurses | Various (U.K.) | Evaluation of a condensed three-day communication course | Improvement in subjective confidence in communication skills; improvement in teaching communication skills |
EOL=end of life; ACP=advance care planning; AD=advance directive; QPL=question prompt list; HCP=health care professional; CPR=cardiopulmonary resuscitation; COPD=chronic obstructive pulmonary disease.
The selected articles originated from the U.S.,
10
U.K.,U.S. Department of Health and Human Services. Advanced directives and advance care planning: Report to Congress. 2008. Available from http://aspe.hhs.gov/daltcp/reports/2008/ADCongRpt.htm. Accessed March 18, 2011.
4
and Australia2
and were published between 1995 and 2009. Two of the Australian studies were conducted by the same team,17
, 18
as were two of the U.S. studies.19
, 20
Seven studies were related to generic life-limiting illnesses, six were focused on cancer, and one each related to HF, respiratory disease, and heart and renal failures (Table 1).Seven of the selected articles described controlled trials, three described intervention studies with no control groups, three used qualitative methods to explore the acceptability of end-of-life communication materials, and three described the development of tools used to facilitate end-of-life communication (Table 1).
Three core themes emerged from the synthesis of the literature: using education to enhance professional communication skills; using communication to improve patient understanding; and using communication skills to facilitate ACP. Each theme is discussed in detail in the following sections.
Using Education to Enhance Professional Communication Skills
Using education to enhance professional communication was a key outcome of five of the studies.
18
, 21
, 22
, 23
, 24
Four explored the effectiveness of intensive workshops/training courses,21
, 22
, 23
, 24
whereas one used interviews and focus groups to discuss when prognosis and end-of-life issues should be initiated with terminally ill patients.18
The time frame of the training courses and workshops ranged between one and three-and-a-half days. All four courses were led by expert instructors and facilitators, either individually or in pairs, and used a mixed method of teaching, including lectures, group exercises, and audio and video demonstrations, with sessions in role-playing to enable participants to practice the taught skills.The training courses and workshops had some success in enhancing the communication skills of health care professionals. For example, there was an improvement in the way physicians delivered bad news and responded to patients' emotional cues, but no improvement in discussions about patient preferences for treatment.
21
There was an improvement in skills in dealing with bad news, denial, and end-of-life issues and an improvement in knowledge and self-efficacy22
and attitudes and intent to change, which were sustained for at least three months.23
However, the studies were small, based on one site and provided no evidence as to whether the changes in attitudes and knowledge led to changes in practice and whether participants improved their communication in real-life situations with patients. Participants taking the course aimed at palliative care cancer nurses showed an improvement in subjective confidence in communication skills, which was maintained for at least six weeks and reflected actual practice. However, the key outcome for evaluation relied on rating participants' performance and perception of the course rather than patient satisfaction with the nurses' skills.24
A qualitative study by Clayton et al.
18
set out to identify the educational needs of palliative care health professionals, palliative care patients, and carers in relation to the timing of discussions about prognosis and end-of-life issues. They identified four main approaches: 1) wait for the patient/carer to raise the topic, 2) all palliative care patients/carers should be offered the opportunity to discuss the future, 3) health care professionals should initiate discussions when patients/carers “need to know,” and 4) health care professionals should initiate discussions when patients/carers seem ready. The authors concluded that the optimal context for end-of-life discussions was within a caring, trusting, long-term relationship that offered open and repeated negotiations for patients' preferences for information.Using Communication to Improve Patient Understanding
Improving patients' understanding of their condition is an important outcome of patient-professional communication.
2
Tools designed to facilitate patients in their understanding of end-of-life issues are described by two authors.25
, 26
First, Menkin25
describes the “Go Wish” card game, which aims to help focus conversations, provide important vocabulary to give a voice to patients' needs and concerns, and offer a means for sharing those ideas. This tool has been used successfully in acute care settings with palliative care patients to initiate end-of-life discussions and identify patient preferences for care and issues relating to death and dying. Norlander's26
ACP tool, “The Kitchen Table Discussion,” also has been designed to facilitate end-of-life discussions. The tool is intended to focus discussions on the patients' understanding of their illness, their personal experiences with death, their goals and values, and how they can be empowered to communicate with physicians. The tools described previously aim to improve not only patient-professional communication but also patients' understanding of their illness and give them a voice to express their needs and concerns.Enabling patients to ask questions that concern them may lead to improvements in communication and, therefore, in understanding.
17
The study by Clayton et al.,17
using a question prompt list 20 minutes before consultation with palliative care physicians, showed a discussion of more issues and an increase in the number of prognostic questions asked by the patients and carers. The authors found that the greatest unmet patient information need was “what to expect in the future,” and this was reduced by use of the question prompt list.Using Communication to Facilitate ACP
Eight of the selected studies explored how communication can be used to facilitate ACP.
19
, 20
, 27
, 28
, 29
, 30
, 31
, 32
The studies explored a variety of interventions including interviews with a facilitator, educational workshops, and educational literature. Three studies used a qualitative approach to explore the acceptability of ACP.27
, 31
, 32
Findings from two of the studies showed that the ACP interviews with a trained facilitator had successful outcomes.
29
, 30
These included an improvement in patient/physician understanding of end-of-life preferences, an increase in patient knowledge of ACP, and less willingness to tolerate poor health states;30
and greater satisfaction with the decision-making process, more satisfaction with the quality of communication, and less decisional conflict.29
The authors' conclude that facilitated ACP discussions can help to define and document the patient's end-of-life care preferences. However, both studies had small sample sizes and were carried out in only one setting, making generalizability difficult.Using an educational workshop to engage patients with ACP had mixed success. In the study by Heffner et al.,
20
patients with chronic lung disease participated in an educational workshop on ADs and other end-of-life issues, including the benefits of discussing end-of-life issues with an appointed proxy and a primary care physician. Findings showed an increase in AD discussions, initiation of life-support discussions, completion of a power of attorney, and patient assurance that their physician understood their end-of-life preferences. However, a similar study by Heffner and Barbieri19
found that patients enrolled in cardiovascular rehabilitation programs receiving a similar intervention showed no differences between the educational and control groups. Interestingly, both groups showed similar improvements regarding discussion about ADs, raising the possibility that the questionnaires themselves rather than the workshops promoted thinking around ADs.A large study of hospitalized U.S. adults with one or more life-limiting illnesses found that an intervention that involved a nurse specially trained to elicit preferences, improve understanding of outcomes, and facilitate ACP had no impact on written do not resuscitate orders or physicians' knowledge of patient preference not to be resuscitated.
28
These findings suggest that information from the health care professional alone is not enough to enable patients to successfully complete ADs. The authors suggest that the intervention may have been more effective if implemented in different settings, earlier in the course of the illness or with physicians rather than nurses as implementers.Findings from a U.K. focus group study showed that some participants welcomed the opportunity to discuss ACP, whereas others did not feel ready.
27
The timing of the discussion is an important influence on acceptability and is best initiated after the recurrence of a disease. The authors' stress that the discussions should be patient-led, appropriately timed, take place over a number of meetings, and be carried out by an appropriately trained professional. Johnson and Nelson31
also used a qualitative approach to determine the acceptability and understanding of a patient information pack containing an information leaflet on cardiopulmonary resuscitation. Findings showed that the leaflet was acceptable but interpreted in the context of patients' understanding of their illness and prognosis. The authors concluded that the leaflet alone is not a reliable method of communicating resuscitation policy; it is important to follow up with the opportunity to ask questions.An evaluation of the Preferred Place of Care document
32
and the process, outcome, and impact of the introduction of this advance care plan into community and inpatient settings in the U.K. found that when the document is initiated by generalist community nurses rather than specialist palliative care consultants, a higher percentage of patients die in their preferred place of care.Discussion
Although it was anticipated that most of the research uncovered by this literature review would be specifically cancer focused, this was only the case in seven of the studies.
17
, 22
, 24
, 25
, 27
, 31
, 32
The review has revealed that only a small number of communication interventions have been evaluated for patients with life-limiting conditions and even fewer are delivered in primary care settings. This suggests that older people with chronic illnesses, who are mainly cared for in the community by their primary care team, are potentially being excluded from optimum communication with health care professionals. However, literature reviews of this type are limited by the lack of precision in the search terms, and it is acknowledged that some relevant articles may not have been found.The range of interventions identified by the review elicited important features of a successful communication model, including focused participant-led training,
21
, 22
, 23
, 24
using effective communication to improve patient understanding25
, 26
and flexible patient-led ACP.19
, 20
, 29
, 30
The development of a communication intervention for patients with life-limiting conditions should include careful consideration of these features and ideally should be cost effective in terms of improved care and a decrease in hospital admissions, as well as fitting into routine practice. There is little in the identified literature relating to the economic cost-saving potential of enhancing communication skills. Cost saving could be considered in terms of decreased hospital admissions, increased self-management leading to fewer crises, and more patients being cared for in their own homes rather than acute care settings. Further research is needed to explore the economic impact of enhanced communication for patients with chronic life-limiting conditions and explore the potential for cost savings and decreased resource use.The studies found from this review used various approaches to elicit data including controlled trials and qualitative methods. Regardless of the approach used to generate evidence, methodological weaknesses were found in all the studies reviewed. Several of the studies used only a limited number of settings and/or had a small sample size, and none of the studies aimed at enhancing patient-professional communication investigated real-life encounters with patients. Patient responses to what is considered to be “good communication” are subjective, and the qualitative studies had self-selecting patients who may have been more open to end-of-life communication. All the studies included only English speakers, and overall, there were only a small number of participants from other groups. This latter point is highlighted by Back et al.
33
who claim that there are no studies to date examining disclosure approaches for patients with variable cultural preferences.It is clear from the studies investigated that communication training for health care professionals needs to be focused, relevant, and tailored to participants' individual needs.
24
Discussions around ACP are more fluid and less easily taught as a series of concrete communication tasks.21
Targeted specific skills can be taught in a brief intensive format, but comprehensive communication skills training requires a greater time commitment from both learners and trainers.21
Findings from this review showed that ACP should ideally take place over a number of meetings, with a trained professional with sufficient time to answer questions.
27
It may be instigated at life-changing events, after new diagnosis, significant shift in treatment, assessment of individuals' needs, and/or multiple hospital admissions.34
ACP discussions should focus more on the goals of care than specific treatments, and clinicians should be responsive to the emotional content of the discussion.35
Discussions should be tailored to the individual and avoid destroying hope, and discussions with health care professionals or trained ACP facilitators should be supported with written documentation.ADs were created to assist doctors in making decisions for patients at the end of life. However, they demonstrate limited effectiveness and a very low prevalence (less than 25%). Decisions based on ADs made by surrogate decision makers may not correspond to the decisions of patients.
36
However, ADs can be a good tool for beginning ACP discussions, for example, in discussing patient values and goals of care, identifying a surrogate decision maker, and encouraging regular communication.37
ADs to refuse treatment should be part of a broader conversation, and patients should have the opportunity to change their minds.27
Some research indicates that, regardless of whether the news may be bad, most patients want as much information about their condition as possible.
37
However, one of the least likely areas to be raised is prognosis, and U.S. research has found that, although patients wish to be kept informed about their condition, they often do not actually want prognostic information.38
, 39
This finding concurs with U.K. research, which showed that although patients wanted honesty from their health care professionals, many preferred some prognostic ambiguity.6
Back et al.33
suggest using a “how much do you want to know” communication strategy, whereas Dea Moore40
suggests paraphrasing what the patient says and summarizing discussions to ensure that central ideas are remembered and understood. This patient-centered communication approach is supported by Swenson et al.41
Given the reluctance of some patients to accept too much information about a poor prognosis, coupled with evidence that suggests many patients have a poor understanding of their condition,9
it seems unlikely that ACP can be easily achieved for the population of patients with limited information about aspects of their condition. Education should be tailored to patient preferences and always offered but not forced. In situations where the patient does not want to discuss future care options or to be informed of their prognosis, then a more value-based discussion is appropriate; for example, asking the patient if there is anything they would want their health care professionals to know about them to look after them in the future in case they became more unwell and clarify who they would want their health care professionals to speak to in case they become too unwell to make decisions for themselves.Conclusion
Evidence relating to the development and evaluation of communication interventions for patients with life-limiting illnesses is limited. However, key features of interventions that support professional communication, enhance patient understanding, and promote discussion of ACP have been identified. The interventions identified in this article represent a heterogeneous group, reporting mixed outcomes. However, some common features exist and would indicate that a successful intervention should include combined components of training, patient discussion, education, and written documentation. There is a clear need for further research to lead to the evidence-based development and rigorous evaluation of communication interventions. In a time of limited resources and financial uncertainty, the potential economic impact of communication interventions also should be considered. In the context of an increasing number of patients living and dying with chronic life-limiting conditions, the need for appropriate and effective communication strategies should be seen as a priority for both research and policy.
Disclosures and Acknowledgments
Funding for this project was provided by the Bupa Foundation, London, U.K. The authors declare no conflicts of interest.
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Article info
Publication history
Published online: July 23, 2012
Accepted:
November 13,
2011
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© 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc.
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