Factors associated with change in resuscitation preference of seriously ill patients. The SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments

Ke, Rosenfeld; Nk, Wenger; Rs, Phillips; Connors, Alfred F.; Nv, Dawson; Layde, Peter M.; Califf, RM; H, Liu; Lynn, John A.; Rk, Oye

doi:10.1001/archinte.156.14.1558

Cited by 66 publications

(49 citation statements)

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“…Prior studies have documented that patients' preferences can change in response to changes in their state of health. 13,18,22 The current study demonstrates how these changes can affect decision-making at the end-of-life. The stories of patients who made decisions to forgo therapy illustrates that advance planning should account for the possibility of changes in preferences and goals that may occur acutely.…”

Section: Discussionmentioning

confidence: 73%

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

2008

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BACKGROUND: Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care. OBJECTIVE:To understand how the end-of-life care experiences of older patients and their caregivers can inform the development of new approaches to ACP. DESIGN:Qualitative cross-sectional study. PARTICIPANTS:Caregivers of community-dwelling persons age ≥ 60 years who died with advanced cancer, chronic obstructive pulmonary disease, or heart failure during follow-up in a longitudinal study. APPROACH:In-depth interviews were conducted 6 months after the patient's death with 64 caregivers.Interviews began with open-ended questions to encourage the caregiver to tell the story of the patient's experiences at the end of life. Additional questions asked about how decisions were made, patient-caregiver, patient-clinician, and caregiver-clinician communication. MAIN RESULTS:Although the experiences recounted by caregivers were highly individual, several common themes emerged from the interviews. These included the following: 1) the lack of availability of treatment options for certain patients, prompting patients and caregivers to consider broader end-of-life issues, 2) changes in preferences at the very end of an illness, 3) variability in patient and caregiver desire for and readiness to hear information about the patient's illness, and 4) difficulties with patientcaregiver communication. DISCUSSION:The experiences of older patients at the end of life and their caregivers support a form of ACP that includes a broader set of issues than treatment decision-making alone, recognizes the dynamic nature of preferences, and focuses on addressing barriers to patient-caregiver communication.KEY WORDS: end-of-life care; caregivers; advance care planning.

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Section: Discussionmentioning

confidence: 73%

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

2008

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“…Others said that they might change their mind, or 'just get tired' of LTTF, without necessarily having a specific problem or complaint. Published studies of stability of preferences and decisions are limited and AfricanAmericans are under-represented (Danis et al, 1994;Rosenfeld et al, 1996).…”

Section: Discussionmentioning

confidence: 99%

Preferences of older African-Americans for long-term tube feeding at the end of life

Am¹,

2004

Aging & Mental Health

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The purpose of this study was to elicit preferences and reasons behind preferences for percutaneous endoscopic gastrostomy (PEG) tube placement in an older African-American sample. Five focus groups were conducted with subjects invited from the Geriatric Clinic of an urban tertiary care hospital. Thematic and latent content analyses were used. Five broad themes emerged as reasons behind the acceptance or rejection of a PEG tube, namely: the nature of the illness; the quality of life at the time of the decision; the concern about dependency; experiences; and religion (including issues of death). The issue of proxy also arose and contained three themes: fear of loss of decision-making ability; trust in family or caregivers as proxy even when the proxy choices differed from their own choices; and trust in the doctor and family to respect personal decisions. Use of a qualitative approach enabled potentially sensitive issues to be discussed. Preferences and the reasons behind these preferences may not always be anticipated by clinicians.

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“…Although nearly 90% of COPD patients had a Health Anxiety and Depression Scale score strongly suggestive for clinical depression and anxiety, only 4% of these patients were receiving pharmacological treatment [30]. Previous studies showed that depressive symptoms were significantly associated with refusal of life-sustaining treatment in oxygen-dependent COPD patients [22] and that symptom improvement after ad hoc pharmacological treatment could lead to a different preference about end-of-life treatment [31]. However, depressive symptoms were also found to be strong predictors of mortality in COPD patients (adjusted hazard risk 1.93) after correction for other risk variables [32].…”

Section: When Should Palliation In End-stage Copd Be Started?mentioning

confidence: 99%

Palliative care in COPD patients: is it only an end-of-life issue?

2012

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The presence of acute or chronic respiratory failure is often seen as a terminal phase of chronic obstructive pulmonary disease. A great variability in end-of-life practice is observed in these patients mainly because physicians are not always able to correctly predict survival. There is a need for a clear discussion about decision making earlier than when acute respiratory failure ensues. Indeed, a perceived poor quality of life does not necessarily correlate with a clear willingness to refuse invasive or noninvasive mechanical ventilation. It has been suggested to start palliative care earlier, together with curative and restorative care, when there is an increased intensity of symptoms. The patients eligible for palliative care are those complaining of breathlessness, pain, fatigue and depression, which in some studies accounted for a prevalence much higher than 50%. Among comfort measures for palliation, oxygen is frequently prescribed even when the criteria for long-term home oxygen therapy are not met; however, when compared with air, no benefits on dyspnoea have been found. The only drug with a proven effect on dyspnoea is morphine, but not when it is delivered with a nebuliser. Finally, noninvasive ventilation may be used only as a comfort measure for palliation to maximise comfort by minimising adverse effects.

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Factors associated with change in resuscitation preference of seriously ill patients. The SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments

Cited by 66 publications

References 0 publications

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

Preferences of older African-Americans for long-term tube feeding at the end of life

Palliative care in COPD patients: is it only an end-of-life issue?

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