Assessment measures in palliative care: The risk of inflation and the importance of listening to the patient's story

Borasio, Gian Domenico; Tamchès, Emmanuel

doi:10.1017/s1478951518000019

“…Many healthcare professionals recognize the importance of patients' illness stories, which provide meaning, context and information that would otherwise be lost during a clinical assessment (Borasio & Tamches, 2018;Foster et al, 2016;Gidman, 2013;Last, 2012;Ragan & Kanter, 2017;Schwind et al, 2015). In practice, understanding a patient's lived illness experience promotes person-centered care, as healthcare providers can attune to what individuals value in their care and in their lives (Charon, 2004;Schwind et al, 2015).…”

Section: Personal Illness Storiesmentioning

confidence: 99%

Personal illness experience of my adolescent self: a narrative inquiry self-study

Aksenchuk¹

2022

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<p>Building on Dewey’s philosophy of experience, our personal and professional lived experiences are mutually informing. Thus, personal illness experiences may impact how we engage in professional roles. In this self-study, using Connelly and Clandinin’s Narrative Inquiry, I explore my experience of an eating disorder as an adolescent, and how this experience informs my nursing practice today. I crafted stories of my illness experience often using poetic prose. I analyzed these using the three levels of justification (personal, practical, social) through the theoretical lens of Erikson’s psychosocial stages of development. Four narrative threads (impulsivity: response to losing control, lack of autonomy, liminality, lack of meaningful relationships) emerged and coalesced into three narrative patterns (control, belonging, identity). This self-study provides healthcare professionals an understanding of the impact a stigmatized illness may have on one’s professional role. My intention is to inspire others to enter their own inquiry into their experiences of illness.</p>

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“…Many healthcare professionals recognize the importance of patients' illness stories, which provide meaning, context and information that would otherwise be lost during a clinical assessment (Borasio & Tamches, 2018;Foster et al, 2016;Gidman, 2013;Last, 2012;Ragan & Kanter, 2017;Schwind et al, 2015). In practice, understanding a patient's lived illness experience promotes person-centered care, as healthcare providers can attune to what individuals value in their care and in their lives (Charon, 2004;Schwind et al, 2015).…”

Section: Personal Illness Storiesmentioning

confidence: 99%

Personal illness experience of my adolescent self: a narrative inquiry self-study

Aksenchuk¹

2022

Preprint

0

View full text Add to dashboard Cite

<p>Building on Dewey’s philosophy of experience, our personal and professional lived experiences are mutually informing. Thus, personal illness experiences may impact how we engage in professional roles. In this self-study, using Connelly and Clandinin’s Narrative Inquiry, I explore my experience of an eating disorder as an adolescent, and how this experience informs my nursing practice today. I crafted stories of my illness experience often using poetic prose. I analyzed these using the three levels of justification (personal, practical, social) through the theoretical lens of Erikson’s psychosocial stages of development. Four narrative threads (impulsivity: response to losing control, lack of autonomy, liminality, lack of meaningful relationships) emerged and coalesced into three narrative patterns (control, belonging, identity). This self-study provides healthcare professionals an understanding of the impact a stigmatized illness may have on one’s professional role. My intention is to inspire others to enter their own inquiry into their experiences of illness.</p>

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Better drug use in advanced disease: an international Delphi study

Huisman

¹

,

Geijteman²,

Dees³

et al. 2018

BMJ Support Palliat Care

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Patients with a limited life expectancy use many medications, some of which may be questionable.Objectives To identify possible solutions for difficulties concerning medication management and formulate recommendations to improve medication management at the end of life.Methods A two-round Delphi study with experts in the field of medication management and end-of-life care (based on ranking in the citation index in Web of Science and relevant publications). We developed a questionnaire with 58 possible solutions for problems regarding medication management at the end of life that were identified in previously performed studies.Results A total of 42 experts from 13 countries participated. Response rate in the first round was 93%, mean agreement between experts for all solutions was 87 % (range 62%–100%); additional suggestions were given by 51%. The response rate in the second round was 74%. Awareness, education and timely communication about medication management came forward as top priorities for guidelines. In addition, solutions considered crucial by many of the experts were development of a list of inappropriate medications at the end of life and incorporation of recommendations for end-of-life medication management in disease-specific guidelines.Conclusions In this international Delphi study, experts reached a high level of consensus on recommendations to improve medication management in end-of-life care. These findings may contribute to the development of clinical practice guidelines for medication management in end-of-life care.

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Assessment measures in palliative care: The risk of inflation and the importance of listening to the patient's story

Cited by 3 publications

References 8 publications

Personal illness experience of my adolescent self: a narrative inquiry self-study

Personal illness experience of my adolescent self: a narrative inquiry self-study

Personal illness experience of my adolescent self: a narrative inquiry self-study

Better drug use in advanced disease: an international Delphi study

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