Harnessing the power of clinician judgement. Identifying risk of deteriorating and dying in people with a haematological malignancy: A Delphi study

Abstract

Aim To provide expert consensus on the clinical indicators that signal a person with a haematological malignancy is at high risk of deteriorating and dying. Background Identification of people who are at risk of deteriorating and dying is essential to facilitate patient autonomy, appropriate treatment decisions, and effective end‐of‐life care. Design A three‐step modified Delphi approach. Methods The study was conducted over 6 months (September 2015–March 2016) to gather opinion from an international panel of experts (N = 27) on the clinical indicators that signal a person with a haematological malignancy is at high risk of deteriorating and dying. The first round was informed by a systematic review of prognostic factors present in the final months of life for people with a haematological malignancy. Consensus was achieved if 70% of responses fell within two points on a seven‐point Likert‐type scale. Findings Consensus was achieved on the following 11 clinical indicators: (a) advancing age; (b) declining performances status; (c) presence of co‐morbidities; (d) disease status; (e) persistent infections (bacterial and viral); (f) fungal infections; (g) severe graft versus host disease; (h) requiring high care; (i) signs of frailty; (j) treatment limitations; and (k) anorexia and/or weight loss. Consensus was also achieved on associated themes and statements for each indicator. Conclusion The findings of this study indicate that subjective clinician‐assessed indicators that are contextually relevant to the nature of haematological malignancies are markers of risk. This study has provided valuable preliminary findings on the topic and will inform future research.

Consensus minimum hemoglobin level above which patients with myelodysplastic syndromes can safely forgo transfusions

“…The modified Delphi process is an efficient way to provide insight into specific clinical questions in hematology. Other panels have similarly assessed questions relating to indicators of clinical decline for blood cancers [19] and decisionmaking factors driving the use of anticoagulants for atrial fibrillation [20], among other important issues.…”

A qualitative evidence synthesis of healthcare professionals’ experiences and views of palliative care for patients with a haematological malignancy

“…treatment limitations, and (k) anorexia and/or weight loss (Button, Gavin, et al, 2019). While clinical subjective and objective indicators provide a useful tool for clinicians in determining risk of deteriorating and dying in haematology patients (Button, Gavin, et al, 2019), the possibility of sudden death is a reality for many haematology patients.…”

“…treatment limitations, and (k) anorexia and/or weight loss (Button, Gavin, et al, 2019). While clinical subjective and objective indicators provide a useful tool for clinicians in determining risk of deteriorating and dying in haematology patients (Button, Gavin, et al, 2019), the possibility of sudden death is a reality for many haematology patients. The unpredictable disease trajectory and haematologists' lack of time and skills to embark on difficult conversations with patients limit the usefulness of the "Surprise" Question (an intuitive estimate of survival) in this setting (Gerlach et al, 2019).…”

“…Button, Chan, Chambers, Butler, and Yates (2016) identified pain, haematopoietic dysfunction, dyspnoea and reduced oral intake being present in the final three months of life for people with a haematologic malignancy. Their work has been further developed to include 11 indicators, (a) advancing age, (b) declining performance status, (c) presence of co‐morbidities, (d) disease status, (e) persistent infections (bacterial and viral), (f) fungal infections, (g) severe graft‐versus‐host disease, (h) requiring high care (i.e., frequent hospitalisations, prolonged hospitalisations), (i) signs of frailty, (j) treatment limitations, and (k) anorexia and/or weight loss (Button, Gavin, et al., 2019). While clinical subjective and objective indicators provide a useful tool for clinicians in determining risk of deteriorating and dying in haematology patients (Button, Gavin, et al., 2019), the possibility of sudden death is a reality for many haematology patients.…”

“…Nurses spend large amounts of time at patients' bedside and are ideally placed to assess the factors that indicate if a person is highly likely to deteriorate and die and requires palliative care interventions (Button et al, 2016;Hopprich, Reinholz, Gerlach, & Weber, 2018). While the 11 clinical indicators identified by Button, Gavin, et al, (2019) Haematologists are well aware that "building bridges" with palliative care colleagues can result in "a uniform team," which better serves patients and their families and reduces the current gaps in end-of-life care for patients with haematological malignancies (LeBlanc, 2016, p. 266).…”