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Discrepant Perceptions About End-of-Life Communication: A Systematic Review

  • Karen Hancock
    Affiliations
    Medical Psychology Research Unit (K.H., J.M.C., P.N.B., R.H., M.H.N.T.), NHMRC Clinical Trials Centre (S.M.P., S.W., S.C., D.G.), School of Psychology (P.N.B., R.H.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New South Wales; Department of Palliative Care (J.M.C.), Royal North Shore Hospital, St. Leonards, New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
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  • Josephine M. Clayton
    Correspondence
    Address reprint requests to: Josephine M. Clayton, MBBS, University of Sydney, Department of Medicine, Medical Psychology Research Unit, Blackburn Building D06, Camperdown 2006, NSW, Australia.
    Affiliations
    Medical Psychology Research Unit (K.H., J.M.C., P.N.B., R.H., M.H.N.T.), NHMRC Clinical Trials Centre (S.M.P., S.W., S.C., D.G.), School of Psychology (P.N.B., R.H.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New South Wales; Department of Palliative Care (J.M.C.), Royal North Shore Hospital, St. Leonards, New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
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  • Sharon M. Parker
    Affiliations
    Medical Psychology Research Unit (K.H., J.M.C., P.N.B., R.H., M.H.N.T.), NHMRC Clinical Trials Centre (S.M.P., S.W., S.C., D.G.), School of Psychology (P.N.B., R.H.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New South Wales; Department of Palliative Care (J.M.C.), Royal North Shore Hospital, St. Leonards, New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
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  • Sharon Walder
    Affiliations
    Medical Psychology Research Unit (K.H., J.M.C., P.N.B., R.H., M.H.N.T.), NHMRC Clinical Trials Centre (S.M.P., S.W., S.C., D.G.), School of Psychology (P.N.B., R.H.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New South Wales; Department of Palliative Care (J.M.C.), Royal North Shore Hospital, St. Leonards, New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
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  • Phyllis N. Butow
    Affiliations
    Medical Psychology Research Unit (K.H., J.M.C., P.N.B., R.H., M.H.N.T.), NHMRC Clinical Trials Centre (S.M.P., S.W., S.C., D.G.), School of Psychology (P.N.B., R.H.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New South Wales; Department of Palliative Care (J.M.C.), Royal North Shore Hospital, St. Leonards, New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
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  • Sue Carrick
    Affiliations
    Medical Psychology Research Unit (K.H., J.M.C., P.N.B., R.H., M.H.N.T.), NHMRC Clinical Trials Centre (S.M.P., S.W., S.C., D.G.), School of Psychology (P.N.B., R.H.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New South Wales; Department of Palliative Care (J.M.C.), Royal North Shore Hospital, St. Leonards, New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
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  • David Currow
    Affiliations
    Medical Psychology Research Unit (K.H., J.M.C., P.N.B., R.H., M.H.N.T.), NHMRC Clinical Trials Centre (S.M.P., S.W., S.C., D.G.), School of Psychology (P.N.B., R.H.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New South Wales; Department of Palliative Care (J.M.C.), Royal North Shore Hospital, St. Leonards, New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
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  • Davina Ghersi
    Affiliations
    Medical Psychology Research Unit (K.H., J.M.C., P.N.B., R.H., M.H.N.T.), NHMRC Clinical Trials Centre (S.M.P., S.W., S.C., D.G.), School of Psychology (P.N.B., R.H.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New South Wales; Department of Palliative Care (J.M.C.), Royal North Shore Hospital, St. Leonards, New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
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  • Paul Glare
    Affiliations
    Medical Psychology Research Unit (K.H., J.M.C., P.N.B., R.H., M.H.N.T.), NHMRC Clinical Trials Centre (S.M.P., S.W., S.C., D.G.), School of Psychology (P.N.B., R.H.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New South Wales; Department of Palliative Care (J.M.C.), Royal North Shore Hospital, St. Leonards, New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
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  • Rebecca Hagerty
    Affiliations
    Medical Psychology Research Unit (K.H., J.M.C., P.N.B., R.H., M.H.N.T.), NHMRC Clinical Trials Centre (S.M.P., S.W., S.C., D.G.), School of Psychology (P.N.B., R.H.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New South Wales; Department of Palliative Care (J.M.C.), Royal North Shore Hospital, St. Leonards, New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
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  • Martin H.N. Tattersall
    Affiliations
    Medical Psychology Research Unit (K.H., J.M.C., P.N.B., R.H., M.H.N.T.), NHMRC Clinical Trials Centre (S.M.P., S.W., S.C., D.G.), School of Psychology (P.N.B., R.H.), and Department of Cancer Medicine (M.H.N.T.), University of Sydney, Camperdown, New South Wales; Department of Palliative Care (J.M.C.), Royal North Shore Hospital, St. Leonards, New South Wales; Palliative and Supportive Services (D.C.), Flinders University, Bedford Park, South Australia; and Department of Palliative Care (P.G.), Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
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Open AccessPublished:June 04, 2007DOI:https://doi.org/10.1016/j.jpainsymman.2006.11.009

      Abstract

      Little research has compared the perceptions of health professionals (HPs), patients, and caregivers about the communication of prognostic information. The objectives of this literature review were to determine 1) patient and caregiver perceptions of levels of information received about prognosis and end-of-life (EoL) issues regarding a life-limiting illness; 2) patient perceptions of and factors related to their understanding and awareness of prognosis; 3) HPs' perceptions of patients' wishes about disclosure of prognosis and factors related to their decision whether to disclose; and 4) concordance between HPs and patients/caregivers regarding the information given by HPs about prognostic and EoL issues. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO, Cochrane Register of Controlled Trials [Central]) up to November 2004. The reference lists of identified studies were hand searched for further relevant studies. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Fifty-one studies were identified. There was a large discrepancy between patients/caregivers and HPs regarding the amount of information they believed had been given. Patients' understanding and awareness of information received conflicted with the HPs' perceptions of patients' understanding and awareness of the information that had been given. HPs tended to underestimate patients' need for information and overestimate patients' understanding and awareness of their prognosis and EoL issues. HPs need to repeatedly check patients' understanding and preferences for information.

      Key Words

      Introduction

      Communication about prognosis, treatment choices, and end-of-life (EoL) issues is central to the decision making that ought to occur in people with life-limiting illnesses.
      • Norton S.A.
      • Bowers B.J.
      Working toward consensus: providers' strategies to shift patients from curative to palliative treatment choices.
      Although communication between health professionals (HPs) and patients at the EoL has been investigated, most literature has focused on disclosing the diagnosis of a life-threatening illness and HP opinions about discussing advance directives and cardiopulmonary resuscitation. In general medical settings, there is some evidence that EoL conversations occur infrequently or are conducted poorly.
      • National Health and Medical Research Council
      Clinical practice guidelines for the psychosocial care of adults with cancer.
      • Hofmann J.C.
      • Wenger N.S.
      • Davis R.B.
      • et al.
      Patient preferences for communication with physicians about end-of-life decisions. SUPPORT Investigators. Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment.
      Over the past 40 years, paternalistic approaches to patient health care have given way to an emphasis on patient autonomy, recognizing the importance of telling patients the truth about their diagnosis and prognosis.
      • Girgis A.
      • Sanson-Fisher R.W.
      • Schofield M.J.
      Is there consensus between breast cancer patients and providers on guidelines for breaking bad news?.
      • VandeKieft G.K.
      Breaking bad news.
      The objectives of this literature review were to:
      • 1)
        determine patient and caregiver perceptions of levels of information received about prognosis and EoL issues regarding an advanced, life-limiting illness;
      • 2)
        identify patient perceptions of, and factors related to, their understanding and awareness of prognosis;
      • 3)
        determine HPs' perceptions of patients' wishes about disclosure of information and factors related to their decision whether to disclose;
      • 4)
        determine the concordance between HPs and patients/caregivers regarding the information given by HPs about prognostic and EoL issues.

      Methods

      Searching

      We conducted a systematic review of the literature pertaining to discussion of prognosis and EoL issues in adult patients with advanced life-limiting illnesses and their caregivers. This paper presents the findings in relation to a subset of studies evaluating perceptions of HPs, patients, and caregivers about their understanding and awareness and factors related to prognosis and EoL issues. Relevant published English language studies that met the inclusion criteria (see Table 1) were identified by searching the following computerized databases: MEDLINE, EMBASE, CINAHL, PsychINFO, and the Cochrane Register of Controlled Trials. The key search terms used were palliative care, terminal (ill patients, care), death and dying, hospice (care), incurable, death attitudes, communication (skills, training), decision-making, decision support systems, prognosis, and client participation. The reference lists of identified studies were also hand searched for further relevant studies.
      Table 1First-Round Eligibility Criteria
      1. Eligibility criteria for studies where patients form the study group
      • a)
        Patients in specialist palliative care or hospice settings (inpatient or community) OR patients in any care setting with a diagnosis of advanced life-limiting illness being treated with palliative intent and with a life expectancy of less than two years (excluding patients with chronic diseases where the illness trajectory is indeterminable such as dementia or multiple sclerosis).
      • b)
        Where samples are mixed (i.e., acute and advanced disease), studies are included if more than 50% of the study group have an advanced life-limiting illness or where the results for such patients are provided separately. Studies are not included where it is not possible to determine what percentage of the study group is being treated with palliative intent and has a life expectancy of less than two years.
      • c)
        The patients are not being treated with curative intent.
      • d)
        The patients are NOT being cared for in an Intensive Care Unit (given that these are likely to be acute life-threatening situations).
      • e)
        The patients are adult (defined as 18 years or over).
      2. Eligibility criteria for studies where caregivers form the study group
      • a)
        The situation of care is restricted to the advanced stages of a life-limiting disease, either inpatient or in the community. This includes studies where the caregiver was asked to recall information about the communication of prognosis or EoL retrospectively.
      3. Eligibility criteria for studies where health professionals (HPs) form the study group
      • a)
        All disciplines of HPs are included as long as they are fully qualified.
      4. General study eligibility criteria
      • a)
        Only those articles published in 1985 and after are included (a period of 20 years is deemed appropriate for inclusion in this review based on changes in patient and community expectations, and HPs' attitudes.
      • b)
        The aims/objective of the study are clearly stated or easily inferred from the text.
      • c)
        Articles from non-English-speaking countries are included and allocated if directly relevant to discussion of prognosis and EoL issues.
      • d)
        Articles on disclosure of diagnosis are included where the disclosure is related to a transition from active treatment to palliation.
      • e)
        Articles dealing with hope are included if they relate to the relationship of hope and communication.
      • f)
        The paper is a reported study or systematic review (excluded are review or discussion papers).

      Selection

      We developed an eligibility checklist for the review, with two rounds of assessment (see Table 1 and Fig. 1 for further details). Each study was graded for the level of evidence according to recommendations for intervention studies by the Australian National Health and Medical Research Council's Standing Committee on Quality of Care and Health Outcomes.

      Data Abstraction

      Individual reviewers extracted data from each of the included studies using a standard format (study type and description, study aims, sample, setting, recruitment, ethics approval, and type of analysis [quantitative or qualitative]). Two evaluators independently assessed the studies, with a third person adjudicating when there was disagreement. We established an advisory panel with expertise in palliative care to provide clinical content expertise and advice to the review authors.

      Results

      Trial Flow (Fig. 1)

      Of the 4,167 references initially identified in the full systematic review regarding prognostic and EoL communication,
      • Parker S.
      • Clayton J.M.
      • Hancock K.
      • et al.
      Communication of prognosis and issues surrounding end of life (EOL) in adults in the advanced stages of a life-limiting illness: a systematic review.
      123 met the inclusion criteria. This manuscript reports findings from the subset of 51 papers of the 123 included in the full systematic review that addresses the objectives 1–4 outlined above.

      Study Characteristics

      Participants included:
      • 1)
        adult patients with an advanced life-limiting illness in any care setting (except intensive care units) being treated with palliative intent and having a life expectancy of two or fewer years, including patients with cancer, end-stage pulmonary disease, end-stage cardiac failure, and motor neuron disease;
      • 2)
        their caregivers;
      • 3)
        qualified HPs (all but five of the studies including HPs refer to physicians, including interns, palliative care specialists, and oncologists, with two studies including physicians and nurses, and three, nurses only).
      Studies ranged in size from 14 to 2,074 participants. Table 2 shows the number of studies comprising patients, caregivers, HPs, and combinations of these categories. Various sampling methods were used, with 12 (23%) being convenience, 11 (22%) random, 11 (22%) purposive, 10 (20%) consecutive case series, and 7 (14%) sampling method not specified.
      Table 2Types of Participants in Included Studies
      Participants SampledNumber of Studies (%)
      Patients20 (39)
      Patients and caregivers1 (2)
      Caregivers7 (14)
      HPs15 (29)
      Patients and HPs5 (10)
      Caregivers and HPs1 (2)
      Patients, caregivers, and HPs2 (4)
      The majority of studies were rated as level IVa evidence (descriptive studies of provider practices, patient behaviors, knowledge, attitudes, or a systematic review of the descriptive studies). One study was rated as level II evidence (at least one properly designed, randomized controlled trial), and another rated as level III evidence (well-designed controlled trials without randomization, well-designed cohort or case-control analytic studies, or from multiple time series, with or without the intervention). A summary of the studies can be found in a report of the full systematic review online.
      • Parker S.
      • Clayton J.M.
      • Hancock K.
      • et al.
      Communication of prognosis and issues surrounding end of life (EOL) in adults in the advanced stages of a life-limiting illness: a systematic review.
      Unless specified, all studies presented are level IV evidence.

      Data Synthesis

      Patient and Caregiver Perceptions of Information Received Concerning Prognosis and EoL Issues

      Patients

      Eight studies reported patient perceptions, with all but one focusing on patients with advanced cancer. Patients reported being given various levels of information regarding their prognosis. In many studies, patients with advanced cancer frequently reported that prognosis was not discussed.
      • Chan A.
      • Woodruff R.K.
      Communicating with patients with advanced cancer.
      • Bradley E.H.
      • Hallemeier A.G.
      • Fried T.R.
      • et al.
      Documentation of discussions about prognosis with terminally ill patients.
      • The A.M.
      • Hak T.
      • Koeter G.
      • van der Wal G.
      Collusion in doctor-patient communication about imminent death: an ethnographic study.
      An Italian study found that 36% of adult patients and slightly fewer elderly patients with cancer (30%) said they were informed about the progression of their disease.
      • Caruso A.
      • Di Francesco B.
      • Pugliese P.
      • Cinanni V.
      • Corlito A.
      Information and awareness of diagnosis and progression of cancer in adult and elderly cancer patients.
      Patient reports were higher in Australian and U.S. studies, with 91% of Australian patients studied
      • Chan A.
      • Woodruff R.K.
      Communicating with patients with advanced cancer.
      stating they were informed that they had advanced cancer, whereas Johnson et al.'s
      • Johnson M.
      • Lin M.
      • Mangalik S.
      • Murphy D.
      • Kramer A.
      Patients' perceptions of physicians' recommendations for comfort care differ by patient age and gender.
      U.S. study found that 21% said no physician had discussed the seriousness of their illness, and 36% said no physician had discussed prognosis with them. In the U.S. study by Haidet et al.,
      • Haidet P.
      • Hamel M.B.
      • Davis R.B.
      • et al.
      Outcomes, preferences for resuscitation, and physician-patient communication among patients with metastatic colorectal cancer. SUPPORT investigators. Study to understand prognoses and preferences for outcomes and risks of treatments.
      many patients with advanced cancer felt that the physician often (incorrectly) interpreted an absence of a patient question as the patient not wanting to know about prognosis. A United Kingdom (UK) study found that some patients reported a sense of ambiguity about their condition, and others reported that they were not informed of their terminal diagnosis and had to directly request it.
      • Costello J.
      Research report. Truth telling and the dying patient: a conspiracy of silence?.
      A Dutch study found that patients with advanced cancer stated that physicians gave information about the course of the illness only when there was a clinical reason for doing so, and when physicians emphasized treatment issues, there was a tendency for them to ignore the prognosis.
      • Costello J.
      Research report. Truth telling and the dying patient: a conspiracy of silence?.
      An Australian study found that detailed technical information about treatments was often provided, but patients felt that this was more often to justify treatments than to provide information.
      • Grbich C.
      • Parker D.
      • Maddocks I.
      Communication and information needs of care-givers of adult family members at diagnosis and during treatment of terminal cancer.
      A Japanese study found that physicians underestimated the patient's desire for information.
      • Kai I.
      • Ohi G.
      • Yano E.
      • et al.
      Communication between patients and physicians about terminal care: a survey in Japan.

      Caregivers

      Five studies reported on caregivers (of patients with advanced cancer in four studies and of stroke patients in one study). Grbich et al.
      • Grbich C.
      • Parker D.
      • Maddocks I.
      Communication and information needs of care-givers of adult family members at diagnosis and during treatment of terminal cancer.
      found that caregivers reported a lack of adequate information from physicians at all levels of the disease process. A U.S. study also reported that 25% of families reported concerns with physician communication regarding medical decision making.
      • Fallowfield L.J.
      • Jenkins V.A.
      • Beveridge H.A.
      Truth may hurt but deceit hurts more: communication in palliative care.
      They perceived information regarding treatments as limited and misleading, and caregivers felt that physicians used the pressure of their position to force families to make a decision regarding treatments (that were often presented as a way of prolonging life).
      A UK study by Addington-Hall and McCarthy
      • Addington-Hall J.
      • McCarthy M.
      Dying from cancer: results of a national population-based investigation.
      found that of 2,074 family members of patients with advanced cancer, half reported being unable to obtain all the information they wanted about the patient's medical condition when they wanted it. Of 60% who had been able to obtain information about the medical condition, 12% had wanted more explanation, and 8% did not get the information as early as required. Interviews with 80 caregivers of stroke patients in this study revealed they perceived a general lack of communication, particularly between the hospital and general practitioners and in coordination of care between district nurses and between hospital staff.
      • Addington-Hall J.
      • Lay M.
      • Altmann D.
      • McCarthy M.
      Symptom control, communication with health professionals, and hospital care of stroke patients in the last year of life as reported by surviving family, friends, and officials.
      This study reported that 37% of caregivers felt the physician was too rushed, and 25% felt the deceased had too little choice about treatment. For those whose information needs had not been met, 10% had not understood the answer, 27% said the person had been too rushed, 12% said the person had been unwilling to give the information, and 12% said the person had not known the answer. Grbich et al.
      • Grbich C.
      • Parker D.
      • Maddocks I.
      Communication and information needs of care-givers of adult family members at diagnosis and during treatment of terminal cancer.
      reported that caregivers found the information provided at diagnosis of a terminal illness insufficient, that referrals to palliative care took time, and in the interim, the lack of information was distressing. Families in another Australian study felt they did not always have the information to make informed decisions.
      • Wilkes L.
      • White K.
      • O'Riordan L.
      Empowerment through information: supporting rural families of oncology patients in palliative care.

      Factors related to perceptions of information received by patients/caregivers

      Seven studies dealt with this topic. The diagnoses of patients were advanced cancer (five), AIDS (one), and life-limiting illnesses (one). Demographic factors may be related to the level of information patients perceived they had received. A Dutch study of 95 patients with advanced cancer found that patients who were older, married and with children reported receiving more information than younger, unmarried and/or single patients.
      • Koedoot C.G.
      • Oort F.J.
      • de Haan R.J.
      • et al.
      The content and amount of information given by medical oncologists when telling patients with advanced cancer what their treatment options are. Palliative chemotherapy and watchful-waiting.
      However, other studies have found that younger
      • Centeno-Cortes C.
      • Nunez-Olarte J.M.
      Questioning diagnosis disclosure in terminal cancer patients: a prospective study evaluating patients' responses.
      • Fallowfield L.
      Participation of patients in decisions about treatment for cancer.
      and more educated patients
      • Mouton C.
      • Teno J.M.
      • Mor V.
      • Piette J.
      Communication of preferences for care among human immunodeficiency virus-infected patients. Barriers to informed decisions?.
      wanted more information. Some caregivers report difficulties in obtaining information when the patient is present in the consultation,
      • Rose K.E.
      A qualitative analysis of the information needs of informal carers of terminally ill cancer patients.
      • Friedrichsen M.J.
      Justification for information and knowledge: perceptions of family members in palliative home care in Sweden.
      suggesting that separate discussion with caregivers in the absence of the patient may be advantageous. Caregivers have also reported that physicians, and to a lesser extent nurses, often act as “gatekeepers” of information, providing or withholding as they thought fit.
      • Rose K.E.
      A qualitative analysis of the information needs of informal carers of terminally ill cancer patients.
      • Carter P.A.
      A not-so-silent cry for help. Older female cancer caregivers' need for information.

      Patient Perceptions of Their Understanding and Awareness and Factors Related to Understanding/Awareness

      This issue was investigated in eight studies. The diagnoses were advanced cancer (six), pulmonary disease (one), and mixed life-limiting illnesses (one). Some studies found that patients had reduced or distorted awareness of the aims and intention of treatment aimed at palliation. In a study with 60 patients referred for palliative radiotherapy in Canada,
      • Chow E.
      • Andersson L.
      • Wong R.
      • et al.
      Patients with advanced cancer: a survey of the understanding of their illness and expectations from palliative radiotherapy for symptomatic metastases.
      87% of patients were not familiar with the concept of radiation treatment, and 78% reported they had been given no information about the treatment before being seen at the clinic. A German study
      • Petrasch S.
      • Bauer M.
      • Reinacher-Schick A.
      • et al.
      Assessment of satisfaction with the communication process during consultation of cancer patients with potentially curable disease, cancer patients on palliative care, and HIV-positive patients.
      found only 48% of palliative patients considered the aim of their treatment to be palliative. Caruso et al.
      • Caruso A.
      • Di Francesco B.
      • Pugliese P.
      • Cinanni V.
      • Corlito A.
      Information and awareness of diagnosis and progression of cancer in adult and elderly cancer patients.
      found that patients with advanced cancer were more likely to be aware of their diagnosis than the progression of their disease. Similarly, 47% of the 100 patients interviewed in an Italian study mistakenly thought the chemotherapy they were receiving was curative.
      • Pronzato P.
      • Bertelli G.
      • Losardo P.
      • Landucci M.
      What do advanced cancer patients know of their disease? A report from Italy.
      It is possible that not wanting to face or accept the reality of the situation may impact on the level of awareness shown by patients. A UK study with 22 older patients reported that the majority had formed their own diagnosis based on lay beliefs of their condition that had been either misconstrued from a lack of information, or were exhibiting a form of denial.
      • Costello J.
      Research report. Truth telling and the dying patient: a conspiracy of silence?.
      The researchers concluded that participants may have been aware of the true nature of their illness but preferred to report something less serious. Denial is possibly a factor also in a UK study, which found that one quarter of chronic obstructive pulmonary disease patients were unwilling to contemplate the future.
      • Jones I.
      • Kirby A.
      • Ormiston P.
      • et al.
      The needs of patients dying of chronic obstructive pulmonary disease in the community.
      Similarly, another UK study that interviewed 16 patients and 14 caregivers reported that despite disclosure, caregivers and patients sometimes felt the need to take up a pretense of unawareness or partial awareness to protect each other.
      Other factors related to higher awareness of prognosis include being cared for in a specialist palliative care unit (42%) rather than a general oncology service,
      • Centeno-Cortes C.
      • Nunez-Olarte J.M.
      Questioning diagnosis disclosure in terminal cancer patients: a prospective study evaluating patients' responses.
      and being younger and having higher education levels.
      • Iconomou G.
      • Viha A.
      • Koutras A.
      • Vagenakis A.G.
      • Kalofonos H.P.
      Information needs and awareness of diagnosis in patients with cancer receiving chemotherapy: a report from Greece.

      HPs' Perceptions of How Much Information Patients Want Regarding Disclosure of Prognosis

      Six studies reported on this aspect of communication of prognosis and EoL issues by HPs. The diagnoses of patients were advanced cancer (two), pulmonary disease (one), and life-limiting illnesses (three).
      Generally, studies reported that physicians believed that all patients should be informed of the terminal nature of their illness.
      • Bruera E.
      • Neumann C.M.
      • Mazzocato C.
      • Stiefel F.
      • Sala R.
      Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients.
      • Eggerman S.
      • Dustin D.
      Death orientation and communication with the terminally ill.
      • Elkington H.
      • White P.
      • Higgs R.
      • Pettinari C.J.
      GPs' views of discussions of prognosis in severe COPD.
      • Pacheco R.
      • Osuna E.
      • Zapata M.G.
      • Luna A.
      Attitudes of medical personnel (doctors and nurses) toward informing the terminal patient.
      • Seale C.
      Communication and awareness about death: a study of a random sample of dying people.
      • Kaplowitz S.
      • Osuch J.
      • Safron D.
      • Campo S.
      Physician communication with seriously ill cancer patients: results of a survey of physicians.
      However, they did not always take the initiative to disclose,
      • Eggerman S.
      • Dustin D.
      Death orientation and communication with the terminally ill.
      and, as discussed above, often underestimated the patient's desire for information. In a small study involving interviews with 51 physicians from the U.S.,
      • Kaplowitz S.
      • Osuch J.
      • Safron D.
      • Campo S.
      Physician communication with seriously ill cancer patients: results of a survey of physicians.
      50% of physicians interviewed said that nearly all of their patients want to know the prognosis. However, in this study less than a third of the physicians said they ask what the patient already knew or wanted to know about the disease. Of those physicians who did not offer prognosis without being asked, only 31% asked the patient what he/she knew or wanted to know.

      Factors influencing HP's decision to disclose prognosis

      Thirteen studies focused on this issue. The diagnoses of patients were advanced cancer (five) and life-limiting illnesses (eight). Factors related to HPs not disclosing information include patient not requesting information,
      • Kaplowitz S.
      • Osuch J.
      • Safron D.
      • Campo S.
      Physician communication with seriously ill cancer patients: results of a survey of physicians.
      • Amir M.
      Considerations guiding physicians when informing cancer patients.
      • Christakis N.A.
      • Iwashyna T.J.
      Attitude and self-reported practice regarding prognostication in a national sample of internists.
      • Gordon E.J.
      • Daugherty C.K.
      ‘Hitting you over the head’: oncologists' disclosure of prognosis to advanced cancer patients.
      • Miyaji N.T.
      The power of compassion: truth-telling among American doctors in the care of dying patients.
      patients having a short life expectancy,
      • Eggerman S.
      • Dustin D.
      Death orientation and communication with the terminally ill.
      • Harrison A.
      • al-Saadi A.M.
      • al-Kaabi A.S.
      • et al.
      Should doctors inform terminally ill patients? The opinions of nationals and doctors in the United Arab Emirates.
      lack of time to discuss the issue,
      • Baile W.F.
      • Lenzi R.
      • Parker P.A.
      • Buckman R.
      • Cohen L.
      Oncologists' attitudes toward and practices in giving bad news: an exploratory study.
      HPs finding it stressful or uncomfortable discussing these issues,
      • Seale C.
      Communication and awareness about death: a study of a random sample of dying people.
      • Christakis N.A.
      • Iwashyna T.J.
      Attitude and self-reported practice regarding prognostication in a national sample of internists.
      • Todd C.
      • Still A.
      General practitioners' strategies and tactics of communication with the terminally ill.
      the person being older,
      • Kaplowitz S.
      • Osuch J.
      • Safron D.
      • Campo S.
      Physician communication with seriously ill cancer patients: results of a survey of physicians.
      and perceived inability of the patient to understand and handle the situation.
      • Pacheco R.
      • Osuna E.
      • Zapata M.G.
      • Luna A.
      Attitudes of medical personnel (doctors and nurses) toward informing the terminal patient.
      • Miyaji N.T.
      The power of compassion: truth-telling among American doctors in the care of dying patients.
      Families requesting that information be disclosed to them and not the patient was a factor in two studies from non-English-speaking countries,
      • Barroso P.
      • Osuna E.
      • Luna A.
      Doctors' death experience and attitudes towards death, euthanasia and informing terminal patients.
      • Georgaki S.
      • Kalaidopoulou O.
      • Liarmakopoulos I.
      • Mystakidou K.
      Nurses' attitudes toward truthful communication with patients with cancer. A Greek study.
      and also in one UK study.
      • Seale C.
      Communication and awareness about death: a study of a random sample of dying people.

      Studies Directly Comparing Agreement between HPs' and Patients' Understanding of Prognostic and EoL Issues

      Ten studies addressed this issue. The diagnoses of patients were advanced cancer (six), AIDS (one), and life-limiting illnesses (three). Three studies
      • Koedoot C.G.
      • Oort F.J.
      • de Haan R.J.
      • et al.
      The content and amount of information given by medical oncologists when telling patients with advanced cancer what their treatment options are. Palliative chemotherapy and watchful-waiting.
      • Gattellari M.
      • Voigt K.J.
      • Butow P.N.
      • Tattersall M.H.
      When the treatment goal is not cure: are cancer patients equipped to make informed decisions?.
      • Tattersall M.H.
      • Gattellari M.
      • Voigt K.
      • Butow P.N.
      When the treatment goal is not cure: are patients informed adequately?.
      analyzed physician/patient audiotaped interactions, two
      • Mackillop W.J.
      • Stewart W.E.
      • Ginsburg A.D.
      • Stewart S.S.
      Cancer patients' perceptions of their disease and its treatment.
      • Quirt C.F.
      • Mackillop W.J.
      • Ginsburg A.D.
      • et al.
      Do doctors know when their patients don't? A survey of doctor-patient communication in lung cancer.
      analyzed physician/patient videotaped interactions, and one analyzed nurse/patient audiotaped interviews of the interaction.
      • Heaven C.M.
      • Maguire P.
      Disclosure of concerns by hospice patients and their identification by nurses.
      In Mackillop et al.'s
      • Mackillop W.J.
      • Stewart W.E.
      • Ginsburg A.D.
      • Stewart S.S.
      Cancer patients' perceptions of their disease and its treatment.
      study, videotaped interviews with 100 outpatients being treated for cancer, 33% with distant metastases believed incorrectly that their cancer was localized, and 33% being treated for palliative intent believed their treatment was curative. In 98% of these cases, physicians believed they had correctly described the extent of disease to the patient. Of the 16 patients who incorrectly believed they were being treated for cure, the physician was unaware of this in 15 cases. Quirt et al.
      • Quirt C.F.
      • Mackillop W.J.
      • Ginsburg A.D.
      • et al.
      Do doctors know when their patients don't? A survey of doctor-patient communication in lung cancer.
      found that 64% of patients with advanced cancer agreed with their physician about the extent of the disease, and 72% agreed with the physician on the intent of treatment. For those cases where there was disagreement, most patients underestimated the extent of the disease.
      In an Australian study interviewing 244 outpatients with advanced cancer,
      • Gattellari M.
      • Butow P.N.
      • Tattersall M.H.
      • Dunn S.M.
      • MacLeod C.A.
      Misunderstanding in cancer patients: why shoot the messenger?.
      8% of patients mistakenly believed the purpose of treatment to be cure, 10% thought it was adjuvant, and 13% didn't know. This contrasted with physicians who felt that all patients understood their diagnosis and treatment.
      Curtis et al.
      • Curtis J.R.
      • Patrick D.L.
      • Caldwell E.
      • Greenlee H.
      • Collier A.C.
      The quality of patient-doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians.
      reported little concordance between AIDS patients and physicians as to EoL discussions, with physicians in this U.S. study believing they had delivered prognostic information more frequently than patients felt they did. Haidet et al.
      • Haidet P.
      • Hamel M.B.
      • Davis R.B.
      • et al.
      Outcomes, preferences for resuscitation, and physician-patient communication among patients with metastatic colorectal cancer. SUPPORT investigators. Study to understand prognoses and preferences for outcomes and risks of treatments.
      reported that in discussions surrounding advance directives, physicians incorrectly identified patient cardiopulmonary resuscitation (CPR) preferences in up to 30% of cases, even when physicians and patients reported discussions. Agreement between patients and clinicians was also poor in another U.S. study,
      • Fried T.R.
      • Bradley E.H.
      • O'Leary J.
      Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians.
      in which 29% of clinician/patient pairs agreed that communication regarding the fatal nature of the patient's illness had not occurred, and 20% of pairs agreed that communication had occurred. In 23% of clinician/patient and 30% of clinician/caregiver pairs, the clinician reported telling the patient, but the patient reported no discussion.

      Discussion

      This review reveals considerable discrepancies in HP and patient/caregiver perceptions regarding provision of prognosis and EoL information to patients with advanced, progressive, life-limiting illnesses. There was a common perception by patients that physicians had a tendency to give information only if the patient asked for it. Physicians frequently incorrectly interpreted not asking as patient/caregivers not wanting to know. Many patients also believed that physicians gave information on the course of the illness only if there was a clinical reason for doing so and that detailed technical information was often given as a justification for treatments as opposed to increasing the patient's knowledge.
      Physicians tended to underestimate the information needs of patients and to be ill informed as to the amount of information the patient and caregiver had taken in or understood, as many physicians believed they had provided the patient with more information than the patient perceived to be the case. Even when physicians believed they had given the patient information, a subgroup of patients (up to 30%) did not understand their diagnosis and treatment. There was also a consistent discrepancy between patient and physician reports as to the extent of the disease and the aims of treatments, as well as the level of information. It was difficult for many physicians to accurately judge the patient's viewpoint and preferences concerning advance directives.
      There are several possible explanations for these findings. Previous research has found that patients tend to forget between 40% and 50% of information given to them by physicians.
      • Ley P.
      Towards better doctor-patient communications.
      They may find it difficult to absorb information if they are distressed; they may not understand the language or jargon used, particularly if the information is not communicated clearly;
      • Lobb E.A.
      • Butow P.N.
      • Kenny D.T.
      • Tattersall M.H.
      Communicating prognosis in early breast cancer: do women understand the language used?.
      • Chapman K.
      • Abraham C.
      • Jenkins V.
      • Fallowfield L.
      Lay understanding of terms used in cancer consultations.
      they may deny or subconsciously block out information that they find unacceptable as a way of coping with their illness;
      • Curtis J.R.
      • Patrick D.L.
      • Caldwell E.
      • Greenlee H.
      • Collier A.C.
      The quality of patient-doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians.
      • Humphrey G.B.
      • Littlewood J.L.
      • Kamps W.A.
      Physician/patient communication: a model considering the interaction of physicians' therapeutic strategy and patients' coping style.
      or physicians may withhold information, particularly if there are family requests for information to be imparted through the family rather than physician, as is the case in some cultures.
      • Goldstein D.
      • Thewes B.
      • Butow P.N.
      Communicating in a multicultural society II: Greek community attitudes towards cancer in Australia.
      • Huang X.
      • Butow P.
      • Meiser B.
      • Goldstein D.
      Attitudes and information needs of Chinese migrant cancer patients and their relatives.

      Limitations

      There are few studies in this area that have used randomized controlled trials and most studies are of a descriptive nature. However, as this research focused primarily on patient and caregiver perceptions, descriptive qualitative research evidence of consecutive case series is integral to our understanding of the issues and may be considered “best evidence.” Much of the research has focused on particular patient groups, which may limit the external validity of findings to all patients with life-limiting illnesses. The issue of culture was not closely explored as the evidence reported was mostly from English-speaking countries. Health care systems both within these countries and between others may differ, so that conclusions drawn from that research may not be directly applicable to all health settings. There may also be differences in patient autonomy and information seeking between different cultures. It is also possible that there is a publication bias in studies of this population. Although hand searching was performed for this review, it is possible that some papers were missed due to the nonindexing of many palliative care journals. It is also possible that a publication and analysis bias exists because the researchers may have a vested interest in finding problems with communication in that it validates their research. However, the sheer volume of research reporting problems in communication in discussing prognosis and EoL issues with patients with an advanced, life-limiting illness, and their caregivers, in addition to clinical reports, suggests more than a vested interest on the part of researchers. Further, the notion that doctors and patients find it difficult to discuss encroaching death has face validity, and it would be a surprising finding to observe the opposite. It is also possible that some differences may have been found if we were able to analyze studies on the basis of year of publication. The studies from the early 1990s may not be reflective of current beliefs and practices. However, there were not enough studies in these years to be able to make a meaningful comparison with more recent studies. Another limitation of studies that have used audiotape analysis of consultations is that an audiotape at a single time point is unlikely to capture the complex and evolving nature of communication about prognosis.

      Implications for Practice and Suggestions for Future Research

      The findings that many patients felt that they did not receive enough information suggest that physicians should not assume that patients with particular characteristics want particular types or amounts of information. It is important not to assume that the patient does not want to discuss the topic simply because he/she does not raise the issue or because of cultural background. Rather than waiting for the patient to request such information, HPs should consider raising or introducing the topic. The patient should be given the option not to discuss it or, where possible, to defer the discussion to a later time.
      The discrepancies found between HPs and patients/caregivers in terms of understanding and awareness suggest that HPs may need to consider the appropriate timing of information, be prepared to repeat information several times both within and between consultations, and check that the patient has understood the information given, and that they have received the information they wanted. It may also be appropriate for HPs to meet separately with caregivers to meet their information needs.
      It is recommended that future research focus on developing training programs to improve HPs' communication skills in providing information, and to evaluate the effectiveness of this on improving patient and caregiver outcomes such as understanding and awareness. It is also recommended that objective evidence of information given to patients/caregivers be obtained in future research (e.g., audiotapes) so that physician/patient/caregiver perceptions can be verified against objective evidence. Future research evaluating physician/patient/caregiver communication using audiotape analysis would also have greater validity if recorded over several consultations to capture the complexity of this process.

      Acknowledgments

      The authors would like to thank Nicole Davis for her valuable assistance in developing the search strategy.

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