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Care of the dying cancer patient in the emergency department: findings from a National survey of Australian emergency department clinicians C. H. Marck,1 J. Weil,2,3 H. Lane,2,3 T. J. Weiland,1,4 J. Philip,2,3 M. Boughey2,3 and G. A. Jelinek1,4 1
Emergency Practice Innovation Centre (EPIcentre) and 2Department of Palliative Care, St Vincent’s Hospital Melbourne, 3Centre for Palliative Care,
and 4Department of Medicine, The University of Melbourne (St Vincent’s Hospital), Melbourne, Victoria, Australia
Key words emergency medicine, neoplasm, medical futility, terminal care, palliative care. Correspondence Claudia Marck, EPIcentre, St Vincent’s Hospital Melbourne, 35 Victoria Parade, Fitzroy, Vic. 3065, Australia. Email: [email protected] Received 7 November 2013; accepted 10 February 2014. doi:10.1111/imj.12379
Abstract Background: Patients with cancer are presenting to emergency departments (ED) for end-of-life care with increasing frequency. Little is known about this experience for patients and ED clinicians in Australia. Aims: To assess the barriers and enablers regarding end-of-life care for cancer patients as perceived by Australian ED clinicians. Methods: There were 4501 Australian ED clinicians invited through their professional colleges to complete an online survey, using multiple-choice and free-text responses. Results: A total of 681 ED clinicians responded, most (84.2%) felt comfortable providing care to the dying and found it to be rewarding (70.9%). Although 83.8% found caring for the dying a reasonable demand on their role as clinician, 83.8% also agreed that the ED is not the right place to die. Respondents demonstrated a wide range of views regarding caring for this patient group in ED through freetext responses. In addition, 64.5% reported that futile treatment is frequently provided in the ED; the main reasons reported were that limitations of care were not clearly documented, or discussed with the patient or their family. Almost all (94.6%) agreed that advance care plans assist in caring for dying patients in the ED. Conclusions: Our findings provide important new insights into a growing area of care for ED. Barriers and enablers to optimal care of the dying patient in ED were identified, and especially the reported high occurrence of futile care, likely a result of these barriers, is detrimental to both optimal patient care and allocation of valuable healthcare resources.
Introduction A primary focus of emergency department (ED) care is to provide urgent medical treatment in the hope of minimising morbidity and preventing death. However, increasingly end-of-life care (EOLC) is being recognised as a core task for ED clinicians.1–5 Canadian data from 2001 have demonstrated that 27% of all those who died of cancer that calendar year presented to ED at least once in the last 2 weeks of life.6 Between 2002 and 2005, this had increased to an average of 34% per year, and of those patients, 5.2% died in the ED.7 Several Australian studies
Funding: Funded by a competitive grant from the Victorian Cancer Agency. Conflict of interest: None.
362
suggest similar patterns with frequent presentations often increasing at the end of life (EOL).8,9 A retrospective audit of cancer deaths in Western Australia showed that 66% of cancer patients presented to an ED in their last year, and 47% in the 90 days before death, with many presenting more than once.10 Australian11,12 and international13 reports show that cancer patients spend considerable time in ED before being transferred to an inpatient unit or palliative care (PC) bed, services that may not be immediately available.14 For patients who are dying from cancer, presenting to an ED and dying in an acute hospital is viewed as an outcome to be avoided,6,14–16 and is at variance with the extensive literature detailing clear and sustained preferences for death at home, or for a minority, an inpatient PC facility.17 There are compelling data to suggest that © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
Care of dying patients in Australian ED
involvement of PC services promotes patient centred care and improves symptom management, quality of life (and perhaps even survival), while minimising futile treatments and inappropriate utilisation of healthcare resources.18–22 Despite good evidence for benefit, referrals to PC services continue to occur late in a patient’s illness, if at all.18,23–25 Given the ageing population and the anticipation of a rapidly rising incidence of cancer specifically,26 ED attendances by patients with advanced cancer are also likely to increase, placing significant demands on ED resources and staff given the complex care needs of these patients.7,27 Some ED clinicians have reported that providing EOLC can present a conflict with the life-saving ethos prevalent in EDs.14,28,29 According to a recent Dutch study 62% of physicians indicated that receiving futile and invasive investigations or treatments for patients near death is common, mostly because it is the default approach.30 Lack of information around goals of care and previous discussions of preferences is a significant contributor, as are communication problems between and amongst healthcare staff, patients and families.14,24,31 Recent Australian literature suggests that futile care is not uncommon and, perhaps unsurprisingly, is likely to be associated with poorer quality of life and a suboptimal use of healthcare resources.32–35 Australian ED staff currently receive little formal training in symptom management, providing EOLC1 or communication skills such as clarifying and discussing goals of care.36 Little is known of the professional attitudes of ED staff regarding these tasks or their learning needs in this area.4,37 We recently undertook qualitative work to assess the main barriers and enablers concerning the care of people with advanced cancer in Australian EDs as perceived by emergency, oncology and PC providers.14 To confirm the generalisability of and add to these findings, we conducted a national survey to assess the barriers and enablers as perceived by ED clinicians regarding the care for patients with advanced cancer in the ED environment. This study describes those findings relevant to caring for dying patients with advanced cancer in the ED.
Methods Instrument development These data were part of a larger survey conducted as phase three of a mixed methods study. Phases one and two consisted of qualitative data collected during focus groups with ED, oncology and PC providers in Melbourne (phase 1) and telephone interviews with ED clinicians around Australia (phase 2) regarding the care of patients with advanced cancer in the ED. The survey was © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
developed by the project team, and items were constructed based on the themes that emerged from the qualitative data. Face validity of the draft survey items was ensured through iterative feedback between project team members. The final survey comprised 9 or 10 (depending on staff type) demographic items and 63 multiple-choice items, which required a response to progress to the next item, and 7 optional (mostly free text) items. Survey completion took approximately 15 min. Items sought graded responses using Likert scales or ordinal multicategory scales. Open-ended questions elicited qualitative responses. This study describes responses to items regarding the care in ED of patients close to end of life, collected through 12 multiple-choice items and any free-text comment made pertaining to this topic throughout the survey. Study approval was obtained from the institutional Human Research Ethics Committee at St Vincent’s Hospital Melbourne.
Procedure An online survey of members of the College of Emergency Nursing Australasia (CENA), the Australian College of Emergency Nursing (ACEN) and the Australasian College for Emergency Medicine (ACEM), who are currently working in an Australian ED was conducted between July and October 2012, using SurveyMonkey (SurveyMonkey.com, LLC, Palo Alto CA, USA). All 4501 eligible participants (960 CENA, 256 ACEN and 3285 ACEM (1281 Fellows and 2004 trainee specialists)) were emailed an invitation and participant information form outlining the study and participant rights, with a hyperlink to the questionnaire. Reminder emails were distributed throughout the data collection period.
Data analysis Quantitative data were exported from SurveyMonkey (SurveyMonkey.com, LLC) to SPSS 20.0 (Released 2011; IBM Corporation, Armonk, NY, USA). Likert scales were collapsed from five to three categories: strongly agree and agree, neutral and strongly disagree and disagree. For each item summary, statistics (n, %) were calculated and compared by demographics. Percentages were adjusted to reflect varying denominators due to missed items or non-completion.
Results Response rate and demographics Demographic data of the 681 respondents are shown in Table 1. All currently working Australian emergency 363
Marck et al.
Table 1 Demographic data
Staff type Nursing staff Medical trainees Fellows or other medical staff Gender Male Female Jurisdiction of employment Victoria New South Wales Queensland Western Australia South Australia Tasmania Northern Territory Australian Capital Territory Years worked in ED 0 to
Care of the dying cancer patient in the emergency department: findings from a National survey of Australian emergency department clinicians C. H. Marck,1 J. Weil,2,3 H. Lane,2,3 T. J. Weiland,1,4 J. Philip,2,3 M. Boughey2,3 and G. A. Jelinek1,4 1
Emergency Practice Innovation Centre (EPIcentre) and 2Department of Palliative Care, St Vincent’s Hospital Melbourne, 3Centre for Palliative Care,
and 4Department of Medicine, The University of Melbourne (St Vincent’s Hospital), Melbourne, Victoria, Australia
Key words emergency medicine, neoplasm, medical futility, terminal care, palliative care. Correspondence Claudia Marck, EPIcentre, St Vincent’s Hospital Melbourne, 35 Victoria Parade, Fitzroy, Vic. 3065, Australia. Email: [email protected] Received 7 November 2013; accepted 10 February 2014. doi:10.1111/imj.12379
Abstract Background: Patients with cancer are presenting to emergency departments (ED) for end-of-life care with increasing frequency. Little is known about this experience for patients and ED clinicians in Australia. Aims: To assess the barriers and enablers regarding end-of-life care for cancer patients as perceived by Australian ED clinicians. Methods: There were 4501 Australian ED clinicians invited through their professional colleges to complete an online survey, using multiple-choice and free-text responses. Results: A total of 681 ED clinicians responded, most (84.2%) felt comfortable providing care to the dying and found it to be rewarding (70.9%). Although 83.8% found caring for the dying a reasonable demand on their role as clinician, 83.8% also agreed that the ED is not the right place to die. Respondents demonstrated a wide range of views regarding caring for this patient group in ED through freetext responses. In addition, 64.5% reported that futile treatment is frequently provided in the ED; the main reasons reported were that limitations of care were not clearly documented, or discussed with the patient or their family. Almost all (94.6%) agreed that advance care plans assist in caring for dying patients in the ED. Conclusions: Our findings provide important new insights into a growing area of care for ED. Barriers and enablers to optimal care of the dying patient in ED were identified, and especially the reported high occurrence of futile care, likely a result of these barriers, is detrimental to both optimal patient care and allocation of valuable healthcare resources.
Introduction A primary focus of emergency department (ED) care is to provide urgent medical treatment in the hope of minimising morbidity and preventing death. However, increasingly end-of-life care (EOLC) is being recognised as a core task for ED clinicians.1–5 Canadian data from 2001 have demonstrated that 27% of all those who died of cancer that calendar year presented to ED at least once in the last 2 weeks of life.6 Between 2002 and 2005, this had increased to an average of 34% per year, and of those patients, 5.2% died in the ED.7 Several Australian studies
Funding: Funded by a competitive grant from the Victorian Cancer Agency. Conflict of interest: None.
362
suggest similar patterns with frequent presentations often increasing at the end of life (EOL).8,9 A retrospective audit of cancer deaths in Western Australia showed that 66% of cancer patients presented to an ED in their last year, and 47% in the 90 days before death, with many presenting more than once.10 Australian11,12 and international13 reports show that cancer patients spend considerable time in ED before being transferred to an inpatient unit or palliative care (PC) bed, services that may not be immediately available.14 For patients who are dying from cancer, presenting to an ED and dying in an acute hospital is viewed as an outcome to be avoided,6,14–16 and is at variance with the extensive literature detailing clear and sustained preferences for death at home, or for a minority, an inpatient PC facility.17 There are compelling data to suggest that © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
Care of dying patients in Australian ED
involvement of PC services promotes patient centred care and improves symptom management, quality of life (and perhaps even survival), while minimising futile treatments and inappropriate utilisation of healthcare resources.18–22 Despite good evidence for benefit, referrals to PC services continue to occur late in a patient’s illness, if at all.18,23–25 Given the ageing population and the anticipation of a rapidly rising incidence of cancer specifically,26 ED attendances by patients with advanced cancer are also likely to increase, placing significant demands on ED resources and staff given the complex care needs of these patients.7,27 Some ED clinicians have reported that providing EOLC can present a conflict with the life-saving ethos prevalent in EDs.14,28,29 According to a recent Dutch study 62% of physicians indicated that receiving futile and invasive investigations or treatments for patients near death is common, mostly because it is the default approach.30 Lack of information around goals of care and previous discussions of preferences is a significant contributor, as are communication problems between and amongst healthcare staff, patients and families.14,24,31 Recent Australian literature suggests that futile care is not uncommon and, perhaps unsurprisingly, is likely to be associated with poorer quality of life and a suboptimal use of healthcare resources.32–35 Australian ED staff currently receive little formal training in symptom management, providing EOLC1 or communication skills such as clarifying and discussing goals of care.36 Little is known of the professional attitudes of ED staff regarding these tasks or their learning needs in this area.4,37 We recently undertook qualitative work to assess the main barriers and enablers concerning the care of people with advanced cancer in Australian EDs as perceived by emergency, oncology and PC providers.14 To confirm the generalisability of and add to these findings, we conducted a national survey to assess the barriers and enablers as perceived by ED clinicians regarding the care for patients with advanced cancer in the ED environment. This study describes those findings relevant to caring for dying patients with advanced cancer in the ED.
Methods Instrument development These data were part of a larger survey conducted as phase three of a mixed methods study. Phases one and two consisted of qualitative data collected during focus groups with ED, oncology and PC providers in Melbourne (phase 1) and telephone interviews with ED clinicians around Australia (phase 2) regarding the care of patients with advanced cancer in the ED. The survey was © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
developed by the project team, and items were constructed based on the themes that emerged from the qualitative data. Face validity of the draft survey items was ensured through iterative feedback between project team members. The final survey comprised 9 or 10 (depending on staff type) demographic items and 63 multiple-choice items, which required a response to progress to the next item, and 7 optional (mostly free text) items. Survey completion took approximately 15 min. Items sought graded responses using Likert scales or ordinal multicategory scales. Open-ended questions elicited qualitative responses. This study describes responses to items regarding the care in ED of patients close to end of life, collected through 12 multiple-choice items and any free-text comment made pertaining to this topic throughout the survey. Study approval was obtained from the institutional Human Research Ethics Committee at St Vincent’s Hospital Melbourne.
Procedure An online survey of members of the College of Emergency Nursing Australasia (CENA), the Australian College of Emergency Nursing (ACEN) and the Australasian College for Emergency Medicine (ACEM), who are currently working in an Australian ED was conducted between July and October 2012, using SurveyMonkey (SurveyMonkey.com, LLC, Palo Alto CA, USA). All 4501 eligible participants (960 CENA, 256 ACEN and 3285 ACEM (1281 Fellows and 2004 trainee specialists)) were emailed an invitation and participant information form outlining the study and participant rights, with a hyperlink to the questionnaire. Reminder emails were distributed throughout the data collection period.
Data analysis Quantitative data were exported from SurveyMonkey (SurveyMonkey.com, LLC) to SPSS 20.0 (Released 2011; IBM Corporation, Armonk, NY, USA). Likert scales were collapsed from five to three categories: strongly agree and agree, neutral and strongly disagree and disagree. For each item summary, statistics (n, %) were calculated and compared by demographics. Percentages were adjusted to reflect varying denominators due to missed items or non-completion.
Results Response rate and demographics Demographic data of the 681 respondents are shown in Table 1. All currently working Australian emergency 363
Marck et al.
Table 1 Demographic data
Staff type Nursing staff Medical trainees Fellows or other medical staff Gender Male Female Jurisdiction of employment Victoria New South Wales Queensland Western Australia South Australia Tasmania Northern Territory Australian Capital Territory Years worked in ED 0 to
