The Association between Treatment Preferences and Trajectories of Care at the End-of-Life

Cosgriff, JoAnne Alissi; Pisani, Margaret A.; Bradley, Elizabeth H.; OʼLeary, John R.; Fried, Terri R.

doi:10.1007/s11606-007-0362-6

Cited by 59 publications

(65 citation statements)

References 39 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…20 Prior quantitative investigation has shown that older patients with advanced cancer are more likely to receive a palliative approach to care despite a greater willingness to undergo intensive interventions than are older patients with COPD or HF. 20 The current results suggest that this mismatch between patients' preferences and care is not a result of a disregard of these preferences. Rather, clinicians recognized the point in the patient's illness at which life prolongation was no longer a reasonable treatment goal and helped patients and caregivers to understand this.…”

Section: Discussionmentioning

confidence: 99%

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

2008

Self Cite

View full text Add to dashboard Cite

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.

show abstract

Section: Discussionmentioning

confidence: 99%

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

2008

Self Cite

View full text Add to dashboard Cite

show abstract

“…Although it is unquestionably true that most people have a "powerful desire to not be dead" (17), a growing body of research demonstrates the limits of this desire (17)(18)(19)(20)(21)(22)(23). Table 1 …”

Section: Values In Tension Near the End Of Lifementioning

confidence: 99%

“…Some surrogates who have a clear understanding of a patient's values may still struggle to understand which treatment pathway is most consistent with those values. Some may need assistance to bridge the gap between the "lay world" of patient values and the "medical world" of treatments (9,19,27).…”

Section: Bridge From the Patient's Values To Specific Treatment Pathwaysmentioning

confidence: 99%

The Facilitated Values History

Scheunemann

Arnold²,

White³

2012

Am J Respir Crit Care Med

View full text Add to dashboard Cite

Many patients who develop incapacitating illness have not expressed clear treatment preferences. Therefore, surrogate decision makers are asked to make judgments about what treatment pathway is most consistent with the patient's values. Surrogates often struggle with such decisions. The difficulty arises because answering the seemingly straightforward question, "What do you think the patient would choose?" is emotionally, cognitively, and morally complex. There is little guidance for clinicians to assist families in constructing an authentic picture of the patient's values and applying them to medical decisions, in part because current models of medical decision making treat the surrogate as the expert on the patient's values and the physician as the expert on technical medical considerations. However, many surrogates need assistance in identifying and working through the sometimes conflicting values relevant to medical decisions near the end of life. We present a framework for clinicians to help surrogates overcome the emotional, cognitive, and moral barriers to high-quality surrogate decision making for incapacitated patients.

show abstract

“…[10][11][12] While the movement to promote advance care planning focuses on preventing scenarios where unwanted aggressive care is provided, physicians often err on the side of withholding life-sustaining treatments when patients have advance care plans indicating a wish for aggressive treatment. 13 In one study, only 5 of the 10 patients wanting aggressive care received treatment consistent with their wishes. 4 Thus, both overtreatment and undertreatment are concerns.…”

Section: Are Advance Care Directives Effective and Safe?mentioning

confidence: 99%

The need for safeguards in advance care planning

Billings

2012

BMJ Support Palliat Care

View full text Add to dashboard Cite

The recent uproar about Medicare "death panels" draws attention to public and professional concerns that advance care planning might restrict access to desired life-sustaining care. The primary goal of advance care planning is to promote the autonomy of a decisionally incapacitated patient when choices about life-sustaining treatments are encountered, but the safety of this procedure has not received deserved scrutiny. Patients often do not understand their decisions or they may change their mind without changing their advance care directives. Likewise, concordance between patients' wishes and the understanding of the physicians and surrogate decision makers who need to represent these wishes is disappointingly poor. A few recent reports show encouraging outcomes from advance care planning, but most studies indicate that the procedure is ineffective in protecting patients from unwanted treatments and may even undermine autonomy by leading to choices that do not reflect patient values, goals, and preferences. Safeguards for advance care planning should be put in place, such as encouraging physicians to err on the side of preserving life when advance care directives are unclear, requiring a trained advisor to review non-emergent patient choices to limit life-sustaining treatment, training of clinicians in conducting such conversations, and structured discussion formats that first address values and goals rather than particular life-sustaining procedures. Key targets for research include: how to improve completion rates for person wanting advance care directives, especially among minorities; more effective and standardized approaches to advance care planning discussions, including how best to present prognostic information to patients; methods for training clinicians and others to assist patients in this process; and systems for assuring that directives are available and up-to-date.

show abstract

The Association between Treatment Preferences and Trajectories of Care at the End-of-Life

Cited by 59 publications

References 39 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

The Facilitated Values History

The need for safeguards in advance care planning

Contact Info

Product

Resources

About