Dissonance on perceptions of end‐of‐life needs between health‐care providers and members of the public: Quantitative cross‐sectional surveys

Cardona, Magnolia; Lewis, Ebony; Shanmugam, Shantiban; Nicholson, Margaret; Williamson, Margaret; Hanly, Laura; Hillman, Kenneth

doi:10.1111/ajag.12630

Cited by 21 publications

(45 citation statements)

References 29 publications

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“…Another recent study revealed a discrepancy between patient preferences for EOL care, including lifesustaining treatment (LST), and physician recommendations on EOL care [10,11], but it is unclear whether differences also exist between patients and nurses or care staff with an essential role in providing EOL care.…”

Section: Introductionmentioning

confidence: 99%

End-of-life care preferences of the general public and recommendations of healthcare providers: a nationwide survey in Japan

2020

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Background: A better understanding of differences between the preferences of the general public and the recommendations of healthcare providers with regard to end-of-life (EOL) care may facilitate EOL discussion. Methods: The aim of this study was to clarify differences between preferences of the general public and recommendations of healthcare providers with regard to treatment, EOL care, and life-sustaining treatment (LST) based on a hypothetical scenario involving a patient with advanced cancer. This study comprised exploratory post-hoc analyses of "The Survey of Public Attitude Towards Medical Care at the End of life", which was a population based, cross-sectional anonymous survey in Japan to investigate public attitudes toward medical care at the end of life. Persons living in Japan over 20 years old were randomly selected nationwide. Physicians, nurses, and care staff were recruited at randomly selected facilities throughout Japan. The general public data from the original study was combined to the data of healthcare providers in order to conduct exploratory post-hoc analyses. The preferences of the general public and recommendations of healthcare providers with regard to EOL care and LST was assessed based on the hypothetical scenario of an advanced cancer patient.Results: All returned questionnaires were analyzed: 973 from the general public, 1039 from physicians, 1854 from nurses, and 752 from care staff (response rates of 16.2, 23.1, 30.9, and 37.6%, respectively). The proportion of the general public who wanted "chemotherapy or radiation", "ventilation", and "cardiopulmonary resuscitation" was significantly higher than the frequency of these options being recommended by physicians, nurses, and care staff, but the general public preference for "cardiopulmonary resuscitation" was significantly lower than the frequency of its recommendation by care staff.Conclusion: Regarding a hypothetical scenario for advanced cancer, the general public preferred more aggressive treatment and more frequent LST than that recommended by healthcare providers.This nationwide cross-sectional survey investigated the preferences of the general public and recommendations of healthcare providers regarding end-of-life care based on the hypothetical scenario of an advanced cancer patient. The general public was found to prefer more aggressive treatment and more frequent life-sustaining treatment than that recommended by healthcare providers.

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Section: Introductionmentioning

confidence: 99%

End-of-life care preferences of the general public and recommendations of healthcare providers: a nationwide survey in Japan

2020

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“…The clinician’s ethical duty to break bad news and allow time for patients and families to come to terms with the inevitable needs to be balanced with the patient readiness for hearing poor prognosis [ 28 ]. The preference to receive full prognostic disclosure varies across cultures and settings and may be changing with time, as suggested by the findings of two population surveys in 2015 in Brazil [ 29 ] and Australia [ 30 ] reporting that a majority of older members of the public wanted to know if they had less than a year to live. By contrast, a 2003 survey of older community dwellers with life-limiting illness and their caregivers in the USA [ 31 ] and a 2008 Canadian survey of inpatients with advanced chronic lung disease [ 32 ] reported that many did not want prognostic disclosure.…”

Section: Discussionmentioning

confidence: 99%

How Do Patients with Life-Limiting Illness and Caregivers Want End-Of-Life Prognostic Information Delivered? A Pilot Study

et al. 2021

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We aimed to identify the level of prognostic disclosure, type of prognostic information and delivery format of prognostic communication that older adults diagnosed with a life-limiting illness or caregivers prefer to receive. We developed and pilot tested an open-ended survey to 15 older patients and caregivers who had experience in health services for life-limiting illness either for a relative, friend or themselves. Five hypothetical clinical scenarios of prognostic options were presented to ascertain preferences. The preferred format to receive prognostic information was verbal delivery by the clinician with a written summary. Photos and videos were less favoured, and a table with numbers/percentages was least preferred. Distress levels to the prognostic scenarios were low, with the exception of a photo. We conclude that older patients/caregivers want end-of-life prognostic information delivered the traditional way, verbally by clinicians. Options to deliver prognostic information may vary across patient groups but empower clinicians in introducing end-of-life discussions with patients/caregivers. Our study illustrates the feasibility of involving terminal patients and caregivers in research that contributes to eliciting prognostic preferences. Further research is needed to understand whether the prognostic preferences of hospitalized patients with life-limiting illness differ.

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“…In addition, overcoming barriers is important in achieving widespread use of ACP. Among reported barriers are uncertainty, lack of comfort and lack of knowledge among health care personnel in doing ACP [13,28,[36][37][38]. Implementation of ACP thus warrants proper education, training and follow-up of health care personnel and leaders.…”

Section: Public Attitudes On Acp Participationmentioning

confidence: 99%

“…Internationally, there are studies on older people's attitudes towards ACP [11,12] and on the public's attitudes [13][14][15][16]. They indicate that while most people have thought about end-of-life care and decision-making [14] there is a wish for information about prognosis, diagnosis and available treatments when facing life-limiting illness [13,15]. Furthermore, most seem willing to participate in conversations on end-of-life care [11,12,16].…”

Section: Introductionmentioning

confidence: 99%

Positive attitudes to advance care planning – a Norwegian general population survey

Sævareid

Pedersen

Magelssen

2021

BMC Health Serv Res

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Background Authorities recommend advance care planning and public acceptance of it is a prerequisite for widespread implementation. Therefore, we did the first study of the Norwegian public with an aim of getting knowledge on their attitudes to issues related to advance care planning. Methods An electronic survey to a nationally representative web panel of Norwegian adults. Results From 1035 complete responses (response rate 40.7%), we found that more than nine out of ten of the general public wanted to participate in advance care planning, believed it to be useful for many, and wanted to make important healthcare decisions themselves. Almost nine out of ten wanted to be accompanied by next of kin during advance care planning. Most (69%) wanted health care personnel to initiate advance care planning and preferred it to be timed to serious illness with limited lifetime (68%). Only about 9% stated that health care personnel should have the final say in healthcare decisions in serious illness. Conclusions Developing and implementing advance care planning as a public health initiative seems warranted based on the results of this study. Patient perspectives should be promoted in decision-making processes. Nevertheless, training of health care personnel should emphasise voluntariness and an individual approach to initiating, timing and conducting advance care planning because of individual variations.

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Dissonance on perceptions of end‐of‐life needs between health‐care providers and members of the public: Quantitative cross‐sectional surveys

Cited by 21 publications

References 29 publications

End-of-life care preferences of the general public and recommendations of healthcare providers: a nationwide survey in Japan

End-of-life care preferences of the general public and recommendations of healthcare providers: a nationwide survey in Japan

How Do Patients with Life-Limiting Illness and Caregivers Want End-Of-Life Prognostic Information Delivered? A Pilot Study

Positive attitudes to advance care planning – a Norwegian general population survey

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