Autonomy Preference Index and advance care planning preference of patients with incurable cancer and their association with anxiety and depression.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 54-54
Author(s):  
Isabelle Colombet ◽  
Alexandra Rouquette ◽  
Miren Urtizberea ◽  
Pascale Vinant
Keyword(s):  
Decision Making ◽  
University Hospital ◽  
School Level ◽  
Medical Decision ◽  
Anxiety And Depression ◽  
Care Planning ◽  
Do Not Resuscitate ◽  
Incurable Cancer ◽  
Preference Index ◽  
Autonomy Preference Index

54 Background: Shared decision-making and informed patient choices are promoted in many countries. However, advances in antitumoral treatments are making decisions and communication more complex and the benefit of early discussions on end-of-life care is still unclear, especially in most distressed patients. Using a validated French version of the Autonomy Preference Index (API), we studied the factors associated with the level of preference for participation in medical decision-making (DM), information seeking (IS) and advanced care planning (ACP) in patients with incurable cancer. Methods: The API is a self-administered scale that measures both dimensions of DM and IS on a 0 - 100 scale (100 for maximum participation and desire for information). DM is also assessed against the illness severity, using 3 clinical vignettes of specific diseases of increasing severity, each on a 0 - 10 scale. We designed another clinical vignette, questioning patient’s preference for discussion on “Do Not Resuscitate” order (ACP). 187 consecutive patients visiting the general oncology clinic of a university hospital completed the questionnaire, as well as the anxiety and depression HADS 14-points scales. Results: Patients were aged 65±12, 46% male, 39% with high school level of education. Lung (25%), colorectal (14%), pancreas (12%) ovarian (12%) were the most frequent types of cancer. 175 (95%) patients were receiving chemotherapy, 60 (33%) had anxiety, and 49 (26%) depression. Median (1st-3rdquartiles) of IS and DM were 45.8 (33.3-58.3), 85.4 (78.1-96.9) respectively. According to the ACP vignette, 177 (95%) patients considered important to discuss such decision with their doctor, 130 (71%) considered it possible, and 127 (68%) preferred to decide together with physician, or him/herself after taking physician’s advice. Female, most educated patients had higher DM score. We find no significant correlation between IS or DM scores and HADS. Conclusions: Incurable cancer patients have high expectations of medical information but intermediate or low level of preference for participation in decision making. However, they value the discussion on ACP to express their informed choice.

scholarly journals Late decisions about treatment limitation in patients with cancer: empirical analysis of end-of-life practices in a haematology and oncology unit at a German university hospital

ESMO Open ◽  
2020 ◽  
Vol 5 (5) ◽  
pp. e000950
Author(s):  
Katja Mehlis ◽  
Elena Bierwirth ◽  
Katsiaryna Laryionava ◽  
Friederike Mumm ◽  
Pia Heussner ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advance Care Planning ◽  
Solid Tumours ◽  
University Hospital ◽  
Care Planning ◽  
Do Not Resuscitate ◽  
Treatment Limitation ◽  
Ethics Policy ◽  
Advance Care

BackgroundDecisions to limit treatment (DLTs) are important to protect patients from overtreatment but constitute one of the most ethically challenging situations in oncology practice. In the Ethics Policy for Advance Care Planning and Limiting Treatment study (EPAL), we examined how often DLT preceded a patient’s death and how early they were determined before (T1) and after (T2) the implementation of an intrainstitutional ethics policy on DLT.MethodsThis prospective quantitative study recruited 1.134 patients with haematological/oncological neoplasia in a period of 2×6 months at the University Hospital of Munich, Germany. Information on admissions, discharges, diagnosis, age, DLT, date and place of death, and time span between the initial determination of a DLT and the death of a patient was recorded using a standardised form.ResultsOverall, for 21% (n=236) of the 1.134 patients, a DLT was made. After implementation of the policy, the proportion decreased (26% T1/16% T2). However, the decisions were more comprehensive, including more often the combination of ‘Do not resuscitate’ and ‘no intense care unit’ (44% T1/64% T2). The median time between the determination of a DLT and the patient’s death was similarly short with 6 days at a regular ward (each T1/T2) and 10.5/9 (T1/T2) days at a palliative care unit. For patients with solid tumours, the DLTs were made earlier at both regular and palliative care units than for the deceased with haematological neoplasia.ConclusionOur results show that an ethics policy on DLT could sensitise for treatment limitations in terms of frequency and extension but had no significant impact on timing of DLT. Since patients with haematological malignancies tend to undergo intensive therapy more often during their last days than patients with solid tumours, special attention needs to be paid to this group. To support timely discussions, we recommend the concept of advance care planning.

Relationship of Depression and Anxiety to Cancer Patients' Medical Decision-Making

2003 ◽  
Vol 93 (2) ◽  
pp. 323-334 ◽  
Author(s):  
Suni Petersen ◽  
Elisabeth Sherman-Slate ◽  
Jamie L. Straub ◽  
Robert C. Schwartz ◽  
Hanna Frost ◽  
...  
Keyword(s):  
Decision Making ◽  
Cancer Patients ◽  
Information Seeking ◽  
Medical Decision Making ◽  
Depression Scale ◽  
Cancer Prognosis ◽  
Medical Decision ◽  
Anxiety And Depression ◽  
Depression And Anxiety ◽  
Rural And Urban

The purpose of this study was to examine the relation of depression and anxiety to cancer patients' medical decision-making. Participants were 79 rural and urban cancer patients undergoing chemotherapy. The four decisional styles of the Decisional Processing Model were the independent variables. Dependent variables were anxiety and depression, measured by Spielberger's State-Trait Anxiety and the Center for Disease Control Depression Scale, respectively. Consistent with the Decisional Processing Model, analysis suggested that patients make medical decisions by information seeking, information processing, advice following, or ruminating. Decisional style did not vary according to type or stage of cancer, prognosis, time elapsed since initial diagnosis, or whether cancer was initial or recurrent. Decisional style did not systematically vary with depression and anxiety suggesting how a person makes decisions is a stable personality trait. Thus, decision-making may follow a cognitive schema. It is likely that patients' decisional styles help to manage anxiety and depression when confronted with life-threatening illness. Implications for informed consent and patients' involvement in decision-making are discussed.

Evidence of increasing public participation in advance care planning: a comparison of polls in Alberta between 2007 and 2013

2016 ◽  
Vol 9 (2) ◽  
pp. 189-196 ◽  
Author(s):  
J E Simon ◽  
S Ghosh ◽  
D Heyland ◽  
T Cooke ◽  
S Davison ◽  
...  
Keyword(s):  
Decision Making ◽  
Advance Care Planning ◽  
Healthcare Providers ◽  
Healthcare Systems ◽  
Medical Decision ◽  
Care Planning ◽  
Future Health ◽  
Advance Care ◽  
Definition Of ◽  
Over Time

BackgroundAdvance care planning (ACP) encompasses both verbal and written communications expressing preferences for future health and personal care and helps prepare people for healthcare decision-making in times of medical crisis. Healthcare systems are increasingly promoting ACP as a way to inform medical decision-making, but it is not clear how public engagement in ACP activities is changing over time.MethodsRaw data from 3 independently conducted public polls on ACP engagement, in the same Canadian province, were analysed to assess whether participation in ACP activities changed over 6 years.ResultsStatistically significant increases were observed between 2007 and 2013 in: recognising the definition of ACP (54.8% to 80.3%, OR 3.37 (95% CI 2.68 to 4.24)), discussions about healthcare preferences with family (48.4% to 59.8%, OR 1.41 (95% CI 1.17 to 1.69)) and with healthcare providers (9.1% to 17.4%, OR 1.98 (95% CI 1.51 to 2.59)), written ACP plans (21% to 34.6%, OR 1.77 (95% CI 1.45 to 2.17)) and legal documentation (23.4% to 42.7%, OR 2.13 (95% CI 1.75 to 2.59)). These remained significant after adjusting for age, education and self-rated health status.ConclusionsACP engagement increased over time, although the overall frequency remains low in certain elements such as discussing ACP with healthcare providers. We discuss factors that may be responsible for the increase and provide suggestions for healthcare systems or other public bodies seeking to stimulate engagement in ACP.

scholarly journals Measuring veterinary client preferences for autonomy and information when making medical decisions for their pets

2021 ◽  
pp. 1-10
Author(s):  
Holli H. Seitz ◽  
Jesse G. Grady
Keyword(s):  
Decision Making ◽  
Pilot Study ◽  
Clinical Decision Making ◽  
Small Animal ◽  
Clinical Decision ◽  
Community Practice ◽  
Medical Decisions ◽  
Preference Index ◽  
Pet Owner ◽  
Autonomy Preference Index

Abstract OBJECTIVE To adapt the 3 scales of the Autonomy Preference Index to veterinary medicine and validate the 3 new scales to measure pet owner preferences for autonomy and information when making medical decisions for their pets. SAMPLE 10 small-animal veterinarians and 10 small-animal clients at a veterinary school–based community practice (pilot study) and 311 small-animal clients of the practice (validation study), of which 47 participated in a follow-up survey. PROCEDURES Wording of items in the Autonomy Preference Index was adapted, and instrument wording was finalized on the basis of feedback obtained in the pilot study to create 3 scales: the Veterinary General Decision-Making Preferences Scale (VGDMPS), Veterinary Clinical Decision-Making Preferences Scale (VCDMPS), and Veterinary Information-Seeking Preferences Scale (VISPS). The 3 scales were then validated by means of administering them to small-animal clients in a clinical setting. RESULTS The 3 scales had acceptable reliability and validity, but clients expressed concern over item wording in the VGDMPS during the pilot study. Overall, results showed that clients had a very high preference for information (mean ± SD VISPS score, 4.78 ± 0.36 on a scale from 1 to 5). Preferences for autonomy varied, but mean values reflected a low-to-moderate desire for autonomy in clinical decision-making (mean ± SD VCDMPS score, 2.04 ± 0.62 on a scale from 1 to 5). CONCLUSIONS AND CLINICAL RELEVANCE The VCDMPS was a reliable and valid instrument for measuring client preferences for autonomy in clinical decision-making. Veterinarians could potentially use this instrument to better understand pet owner preferences and tailor their communication approach accordingly.

Advance Care Planning and Shared Decision-Making: Paving the Way

2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 39-39
Author(s):  
Francesca Bosisio ◽  
◽  
Daniela Ritzenthaler ◽  
Eve Rubli Truchard ◽  
Ralf J. Jox ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Advance Care Planning ◽  
Care Quality ◽  
University Hospital ◽  
Care Planning ◽  
Shared Decision ◽  
Goals Of Care ◽  
Decision Making Capacity ◽  
Advance Care

"Advance care planning (ACP) has become widely used in medical care in order to plan ahead of a loss of decision-making capacity. Since ACP aim is to promote anticipatory and substitute autonomy by engaging people ‒ and possibly their relatives ‒ in deciding about future goals of care and treatments, scientific literature in this field often posits that ACP involve shared decision-making. This assumption however is rarely backed up by an in-depth reflection on how shared decision-making might operate within ACP and which shared decision-making template is more likely to foster ACP. Our ACP tool, based on a model created at the Zurich University Hospital (Krones et al, 2019), engages patients in a structured communicational process about their values and preferences for care. In this tool, ACP facilitators help patients set goals of care and document treatments decisions in three paradigmatic situations of loss of decision-making capacity. Because our ACP tool entails discussions about goals of care, quality of life, and options in terms of disease- or symptom-management, we turned to Elwyn and al.’s three talk’s model (2012) and Vermunt et al.’s three level goal model (2018) in order to incorporate elements of shared decision-making in our ACP tool. In this presentation we discuss how these models might be combined in order to foster shared decision-making within our ACP tool and, by then, broaden its scope and eventually improve its effectiveness, strengthen its theoretical foundations and uphold the ethics of care in the event of a loss of decision-making capacity. "

Cancer Patients’ Views and Experiences of Participation in Care and Decision Making

2001 ◽  
Vol 8 (2) ◽  
pp. 97-113 ◽  
Author(s):  
Carita Sainio ◽  
Sirkka Lauri ◽  
Elina Eriksson
Keyword(s):  
Decision Making ◽  
Cancer Patients ◽  
Patient Participation ◽  
Treatment Options ◽  
Good Health ◽  
University Hospital ◽  
Medical Decision ◽  
Medical Decisions ◽  
High Staff Turnover ◽  
Nurses And Physicians

The purpose of this study was to explore the views and experiences of adult cancer patients about patient participation in care and decision making and the preconditions for this participation. The data were collected by means of focused interviews; in addition the patients completed depression and problem-solving instruments. The sample comprised 34 cancer patients from the haematological and oncological wards of one university hospital in Finland. The results revealed considerable variation in the patients’ views on their participation in care and decision making. Some of the patients understood participation either in terms of contributing to the decision making or in terms of expressing their views on treatment options. Some considered that their participation in care was impossible. Patient participation in care and decision making was promoted by good health, access to information, assertiveness, good interactive relationships with nurses and physicians, and encouragement by nurses and physicians to participate. Factors restricting such patient participation were poor health, ignorance, anxiety, age, time pressures of staff, lack of time, high staff turnover and poor interactive relationships. With regard to participation in medical decision making, the patients were divided into three groups: (1) active participants ( n = 7), (2) patients giving active consent ( n = 9), and (3) patients giving passive consent to medical decisions ( n = 18).

scholarly journals Power Dynamics in a Triad Relationship: Advance Care Planning for Older Adults with Dementia in China

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 903-903
Author(s):  
Yifan Lou ◽  
Jinyu Liu ◽  
Bei Wu
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
Decision Maker ◽  
Advance Care Planning ◽  
Medical Decision ◽  
Power Dynamics ◽  
Care Planning ◽  
Grounded Theory Method ◽  
Advance Care ◽  
Actual Decision

Abstract Objective: Primary family caregiver (CG), other family members (FM), and medical professionals (MP) play important roles in medical decision-making for older adults with dementia, who often have lost the capacity to make decisions on their own. Power dynamics within the CG-FM-MP triad relationship determine the process and outcome of the decision-making. Guided by Rahl’s relational power model, this study is among the first to understand the experiences of advance care planning among Chinese. Method: This study includes a total of 25 primary CGs or FMs and 5 MPs from 3 neurology departments. Hybrid grounded theory method was used to analyze the preliminary data we had so far. Based on the dimensions of power, we analyzed the power base, means, and scope of each agent in each interview to determine the power comparability. Results: Three types of triadic power relations were categorized: 1) shared-power with shared-decision, in which three agents shared the power of decision-making and CG as the lawful decision-maker makes the final decisions; 2) balanced-power with reversed-patriarchal decisions, in which FM’s power is over both CG and MP and become the actual decision-maker; and 3) unbalanced power with conflicting decisions, in which neither CG and FM has absolute power over each other and MP becomes the actual decision-maker implicitly. Conclusion: The study provides a framework for researchers and practitioners to understand the ACP process for Chinese older adults, which helps develop intervention strategies to improve surrogates’ ACP knowledge and reduce potential conflicts during the stressful process for the population.

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

2021 ◽  
pp. 104990912110266
Author(s):  
David B. Simmons ◽  
Benjamin H. Levi ◽  
Michael J. Green ◽  
In Seo La ◽  
Daniella Lipnick ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Tertiary Care ◽  
Medical Decision ◽  
Care Planning ◽  
Prognostic Information ◽  
Informational Uncertainty ◽  
Advance Care ◽  
Patients Wishes

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.

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