Dataset Information

What Surrogates Understand (and Don't Understand) About Patients' Wishes After Engaging Advance Care Planning: A Qualitative Analysis.

ABSTRACT:

Background

The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions.

Aim

To explore how ACP did or did not contribute to a spokespersons' understanding of patient wishes after engaging in ACP.

Design

Thematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid.

Setting/participants

200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP.

Results

ACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients' wishes, and 3) complicated emotions impacting end-of-life discussions.

Conclusions

Helping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.

SUBMITTER: Simmons DB

PROVIDER: S-EPMC9255430 | biostudies-literature | 2022 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

What Surrogates Understand (and Don't Understand) About Patients' Wishes After Engaging Advance Care Planning: A Qualitative Analysis.

Simmons David B DB Levi Benjamin H BH Green Michael J MJ La In Seo IS Lipnick Daniella D Smith Theresa J TJ Thiede Elizabeth R ER Wiegand Debra L DL Van Scoy Lauren L

The American journal of hospice & palliative care 20210624 4

<h4>Background</h4>The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions.<h4>Aim</h4>To explore how ACP did or did not contribute to a spokespersons' understanding of patient wishes after ...[more]

PMID: 34164999

Similar Datasets

Project description:BackgroundAdvance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. We sought to: 1) explore patients' and families' understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians' views of ACP, including their experiences with initiating ACP and views on ACP training.MethodsThis was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Semi-structured interviews with advanced cancer out-patients and their family members (n = 4 patients, 4 family members) and oncologists (n = 10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets.ResultsThemes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients' and families' informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP.ConclusionsStakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

Project description:Background and objectivesMore than 90,000 patients with ESRD die annually in the United States, yet advance care planning (ACP) is underutilized. Understanding patients' and families' diverse needs can strengthen systematic efforts to improve ACP.Design, setting, participants, & measurementsIn-depth interviews were conducted with a purposive sample of patients and family/friends from dialysis units at two study sites. Applying grounded theory, interviews were audiotaped, professionally transcribed, and analyzed in an iterative process. Emergent themes were identified, discussed, and organized into major themes and subthemes.ResultsThirteen patients and nine family/friends participated in interviews. The mean patient age was 63 years (SD 14) and five patients were women. Participants identified as black (n=1), Hispanic (n=4), Native American (n=4), Pacific Islander (n=1), white (n=11), and mixed (n=1). Three major themes with associated subthemes were identified. The first theme, "Prior experiences with ACP," revealed that these discussions rarely occur, yet most patients desire them. A potential role for the primary care physician was broached. The second theme, "Factors that may affect perspectives on ACP," included a desire for more of a connection with the nephrologist, positive and negative experiences with the dialysis team, disenfranchisement, life experiences, personality traits, patient-family/friend relationships, and power differentials. The third theme, "Recommendations for discussing ACP," included thoughts on who should lead discussions, where and when discussions should take place, what should be discussed and how.ConclusionsMany participants desired better communication with their nephrologist and/or their dialysis team. A number expressed feelings of disenfranchisement that could negatively impact ACP discussions through diminished trust. Life experiences, personality traits, and relationships with family and friends may affect patient perspectives regarding ACP. This study's findings may inform clinical practice and will be useful in designing prospective intervention studies to improve patient and family experiences at the end of life.

Project description:IntroductionPatients in intensive care units (ICUs) may transition into an end-of-life phase during treatment. Advance care planning (ACP) for this population has not been studied comprehensively, and support for its implementation is insufficient.ObjectiveThis study aims to clarify the ACP support needs among critical perioperative patients.MethodsIn this qualitative descriptive study, semistructured interviews were conducted with patients previously admitted to the ICU. The survey was conducted from September to November 2019. Participants comprised 13 individuals, who were admitted to the ICU for a period of 3 months to 2 years after surgery.ResultsThe average age of the participants was 63.8 years. The average mechanical ventilation duration following surgery was 24.5 h. The interviews focused on the ACP needs from the preoperative period to discharge. About 90% of the patients thought about the possibility of death before surgery and considered giving advance orders (e.g., "I don't want life-sustaining treatment"). The participants discussed inheritance, work-related matters, and household issues with their families but rarely spoke about treatment and care. Although they examined the content of the advance directives, the medical staff was not informed about them. Patients revealed that they wanted to understand the distinction between life-prolonging and life-saving treatments and discuss it with the medical staff, apart from being educated on ACP. Many patients previously admitted to the ICU are unclear about the difference between life-prolonging and life-saving treatments; this is also true for medical staff.ConclusionPatients who had been admitted to the ICU after high-risk surgery thought they needed help with ACP before surgery. Therefore, patients have the right to know about treatment risks; however, medical staff believes that this is difficult to communicate. Thus, medical staff should consider ways to communicate clearly with patients, including discussing the risks associated with surgery.

Project description:ObjectiveMost previous studies on advance care planning (ACP) have focused on patients with specific diseases and only a few on frail ageing individuals. We therefore decided to examine the perspective of geriatric patients on ACP. Our research questions include if, when, with whom and with which content geriatric patients wish to have ACP conversations.DesignParticipants were interviewed either in the hospital or in their own home. The interviewer followed a semistructured interview guide. Interviews were transcribed and analysed using the systemic text condensation method.SettingGeriatric department in a regional hospital in a rural area in Region Zealand, Denmark.ParticipantsWe included 11 geriatric patients aged above 65 who had been referred for geriatric inpatient or outpatient assessment. Participants were clinically judged by experienced geriatricians to have sufficient physical and mental capacity to take part in an interview.ResultsThis study's main finding is that geriatric patients have varying preferences and feelings towards ACP. Some expressed concerns about ACP, especially regarding personal fear to talk about end-of-life (EOL) decisions, and whether a busy healthcare system has the resources to conduct ACP. Proper timing of ACP seemed unrelated to specific age but related to perception of health situation. The health professional involved should be well trained and a person the participant could trust. Most participants wanted family members to participate. Concerning content, participants mentioned quality of life, fear of losing their spouse, earlier experience with death, and practical concerns regarding funeral and will.ConclusionAmong geriatric patients, feelings towards ACP are mixed. Even participants who were generally positive towards the concept uttered concerns about the circumstances when talking about EOL topics. Health professionals therefore should approach ACP discussions with caution. Further studies aiming to develop guidelines describing the proper way to introduce and perform ACP in this patient group are needed.

Dataset Information

What Surrogates Understand (and Don't Understand) About Patients' Wishes After Engaging Advance Care Planning: A Qualitative Analysis.

Background

Aim

Design

Setting/participants

Results

Conclusions

Publications

What Surrogates Understand (and Don't Understand) About Patients' Wishes After Engaging Advance Care Planning: A Qualitative Analysis.

Similar Datasets

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