Experiences of bereaved family caregivers with shared decision making in palliative cancer treatment: a qualitative interview study

Oosterhout, Sanne P. C. van; Ermers, Daisy J M; Amstel, Floor K Ploos van; Herpen, Carla M.L. van; Schoon, Yvonne; Perry, Marieke; Geel, Maartje van; Kuip, Evelien; Engels, Yvonne

doi:10.1186/s12904-021-00833-z

Cited by 18 publications

(22 citation statements)

References 35 publications

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“… 27 Earlier preemptive conversations about EOL care preferences could enable patients to have a voice in decision-making processes even when they are too ill to participate and may mitigate the uncertainty of caregivers about what patients would want. 28 Future research should aim to increase patient participation in EOL decision-making by increasing preemptive and anticipatory conversations for patients with high-risk AML.…”

Section: Discussionmentioning

confidence: 99%

Code status transitions in patients with high-risk acute myeloid leukemia

Abrams¹,

Nipp

Traeger

et al. 2022

Blood Advances

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Patients with high-risk acute myeloid leukemia (AML) often experience intensive medical care at the end of life (EOL) including high rates of hospitalizations and intensive care unit admissions. Despite this, studies examining code status transitions are lacking. We conducted a mixed-methods study of 200 patients with high-risk AML enrolled in supportive care studies at Massachusetts General Hospital between 2014-2021. We defined high-risk AML as relapsed/refractory or diagnosis at age ≥60. We used consensus-driven medical record review to characterize code status transitions. At diagnosis, 86.0% (172/200) of patients were 'full code' (38.5% presumed, 47.5% confirmed) and 8.5% had restrictions on life-sustaining therapies. Overall, 57.0% of patients experienced a transition during the study period. Median time from last transition to death was 2 days (range 0-350). Most final transitions (71.1%) were to comfort measures near EOL; only 60.5% of patients participated in these last transitions. We identified three conversation types leading to transitions: informative conversations focusing on futility after clinical deterioration (51.0%); anticipatory conversations at the time of acute deterioration (32.2%); and pre-emptive conversations (15.6%) prior to deterioration. Younger age (B=0.04, P=0.002) and informative conversations (B=-2.79, P<0.001) were associated with shorter time from last transition to death. Over two-thirds of patients were "presumed full code" at diagnosis of high-risk AML, and most experienced code status transitions focused on futility of continuing life-sustaining therapies near EOL. These results suggest that goals-of-care discussions occur late in the illness course for patients with AML and warrant interventions to increase earlier discussions regarding EOL preferences.

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Section: Discussionmentioning

confidence: 99%

Code status transitions in patients with high-risk acute myeloid leukemia

Abrams¹,

Nipp

Traeger

et al. 2022

Blood Advances

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“…The description and discussion of the four cases, from the clinical and healthcare perspectives, show that the theoretical implementation of SDM within PPM is not so clearly established as it initially seemed based on a current state of the art [2][3][4][7][8][9][10][11]. Nevertheless, although societies and international consortiums are starting to ask about patients' involvement in their health decisions [7,12,23,24], more clinical and psychological research is needed to learn how to manage the personal component of this humanistic approach which cancer patients are requesting [13][14][15][16][17]19,20,22]. In this study, the emerging scenarios are probably due to the individual variability, the critical time in which patients and surgeons managed this approach (i.e., the first waves of the COVID-19 pandemic [21]), the ethical considerations, and the lack of maturity in current evidence-based medicine regarding SDM medical practice.…”

Section: Integrating Shared Decision-making Cases Within Personalized...mentioning

confidence: 98%

“…Prolonging life was a motivating factor for the treatment to the detriment of the quality of life or the patient's decision. It probably requires education and politeness to keep a respectful relationship, close involvement, and open communication with healthcare professionals in the palliative scenario [20].…”

Section: Patientmentioning

confidence: 99%

The Role of Shared Decision-Making in Personalised Medicine: Opening the Debate

et al. 2022

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Surgeons and cancer patients are starting to open the debate on how personalised medicine could use shared decision-making (SDM) to balance the personal and clinical components and thus improve the quality and value of care. Personalised precision medicine (PPM) has traditionally focused on the use of genomic information when prescribing treatments, which are usually pharmaceutical. However, the knowledge base is considerably scarcer in terms of how clinicians can individualise the information they provide patients about the consequences of different treatments, and in doing so involve them in the decision-making process. To achieve this, the ethical implications of SDM must be addressed from both sides. This paper explores the medical characteristics, the SDM implications in severe and fragile patients, potential risks, and observed benefits within this healthcare approach through four clinical cases. Findings shed light on current needs for clinician and patient training and tools related to SDM in PPM, and also remarks on the way in which this shift in healthcare settings is taking place to include the human component together with the biological and technological advances when designing care processes in colorectal cancer.

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Section: Introductionmentioning

confidence: 99%

“…4,5 Family caregivers provide a combination of physical, psychological, emotional and financial support to the person they care for 6 and can be involved in the decision-making process pertaining to care. 7 The family caregiver in palliative care services is often conceptualised as the provider of support within the patient-family caregiver relationship. 8 However, the caring relationship between people with life-limiting illness and their family caregivers can be bidirectional.…”

Section: Introductionmentioning

confidence: 99%

Mutual support between patients and family caregivers in palliative care: A qualitative study

McCauley,

Ryan,

McQuillan

et al. 2023

Palliat Med

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Background: Patients in receipt of palliative care services are often viewed primarily as recipients of support from their family caregiver. There is a dearth of evidence in palliative care on what comprises mutual support between patients and their family caregivers in palliative care. Aim: To identify processes of mutual support between patients and family caregivers in palliative care. Design: Qualitative study comprising semi-structured interviews. Data were analysed using grounded theory procedures. Setting/participants: Fifteen patients with advanced illness (cancer n = 14, neurodegenerative n = 1) and 21 family caregivers recruited from a large regional-based hospice. Results: Mutual support between patients and family caregivers comprised two primary modes in which support was provided and received. Mutual support involved both patients and family caregivers providing similar types of support to each other, and which typically manifested as emotional support. However, mutual support also occurred when patients reciprocated by providing emotional support to their family caregivers to compensate for other forms of support which they felt no longer able to provide. Patients supported family caregivers by involving them in decision-making for care and both patient and family caregiver preferences were influenced by obligation to their respective other. Mutual support comprised both disclosure and concealment. Involving family caregivers in patient care decision-making was intended by patients to help family caregivers adjust to a caregiving role. Conclusions: The findings inform the development and delivery of psychosocial interventions for patients and family caregivers in palliative care aimed at facilitating supportive relations between them.

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Experiences of bereaved family caregivers with shared decision making in palliative cancer treatment: a qualitative interview study

Cited by 18 publications

References 35 publications

Code status transitions in patients with high-risk acute myeloid leukemia

Code status transitions in patients with high-risk acute myeloid leukemia

The Role of Shared Decision-Making in Personalised Medicine: Opening the Debate

Mutual support between patients and family caregivers in palliative care: A qualitative study

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