The Lived Experiences of Parents Having a Child With a Brain Tumor During the Shared Decision-Making Process of Treatment

Abstract Background In Japan, forgoing life-sustaining treatment to respect the will of patients at the terminal stage is not stipulated by law. According to the Guidelines for the Decision-Making Process in Terminal-Stage Healthcare published by the Ministry of Health, Labor and Welfare in 2007, the Japanese Society for Dialysis Therapy (JSDT) developed a proposal that was limited to patients at the terminal stage and did not explicitly cover patients with dementia. This proposal for the shared decision-making process regarding the initiation and continuation of maintenance hemodialysis was published in 2014. Methods and results In response to changes in social conditions, the JSDT revised the proposal in 2020 to provide guidance for the process by which the healthcare team can provide the best healthcare management and care with respect to the patient's will through advance care planning and shared decision making. For all patients with end-stage kidney disease, including those at the nonterminal stage and those with dementia, the decision-making process includes conservative kidney management. Conclusions The proposal is based on consensus rather than evidence-based clinical practice guidelines. The healthcare team is therefore not guaranteed to be legally exempt if the patient dies after the policies in the proposal are implemented and must respond appropriately at the discretion of each institution.

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023 PP: INVOLVING PATIENTS AND CARERS IN RESEARCH: THE EXPERIENCE OF OLDER PEOPLE IN THE SHARED DECISION-MAKING PROCESS IN ADVANCED KIDNEY CARE a

BMJ Open ◽

10.1136/bmjopen-2017-016492.41 ◽

2017 ◽

Vol 7 (Suppl 2) ◽

pp. bmjopen-2017-016492.41

Author(s):

N Thomas ◽

K Jenkins ◽

S Datta ◽

R Endacott ◽

J Kent ◽

...

Keyword(s):

Decision Making ◽

Older People ◽

Shared Decision Making ◽

Decision Making Process ◽

Shared Decision

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Depressed Latinx Older Adults’ Shared Decision-Making Preferences

10.31234/osf.io/6z25r ◽

2021 ◽

Author(s):

Sara Romero ◽

Patrick Raue ◽

Andrew Rasmussen

Keyword(s):

Primary Care ◽

Decision Making ◽

Puerto Rican ◽

Shared Decision Making ◽

Decision Making Process ◽

Shared Decision ◽

Medical Conditions ◽

Depression Severity ◽

Related Information ◽

Health Related

The shared decision-making (SDM) model is the optimal patient-centered approach to reduce racial and ethnic health disparities in primary care settings. This study examined decision-making preferences and the desire to be knowledgeable of health-related information of a multiheritage group of depressed older Latinx primary care patients. The primary aim was to determine differences in treatment preferences for both general medical conditions and depression and desire to be knowledgeable of health-related information between older Puerto Rican adults compared to older non-Puerto Rican Latinx adults. We also examined whether depression severity moderated those relationships. A sample of 178 older Latinx patients were assessed on measures of decision-making preferences, information-seeking desires, and depression severity. Regression models indicated depression severity moderated the relationship between Latinx heritage and decision-making preferences that relate to general medical decisions, but not depression treatment. Specifically, Puerto Ricans with high levels of depression preferred to be more active in making decisions related to general medical conditions compared to non-Puerto Rican patients who preferred less active involvement. There was no difference between groups at low levels of depression as both groups preferred to be similarly active in the decision-making process. This investigation adds to the literature by indicating between-group differences within a Latinx older adult sample regarding decision-making preferences and the desire to be informed of health-related information. Future research is needed to identify other sociocultural characteristics that contribute to this disparity between Latinx heritage groups in their desires to participate in the decision-making process with their primary care provider.

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Older patients’ experiences with a shared decision-making process on choosing dialysis or conservative care for advanced chronic kidney disease: a survey study

BMC Nephrology ◽

10.1186/s12882-019-1423-x ◽

2019 ◽

Vol 20 (1) ◽

Cited By ~ 2

Author(s):

Wouter R. Verberne ◽

Wanda S. Konijn ◽

Karen Prantl ◽

Janneke Dijkers ◽

Margriet T. Roskam ◽

...

Keyword(s):

Chronic Kidney Disease ◽

Decision Making ◽

Kidney Disease ◽

Shared Decision Making ◽

Older Patients ◽

Survey Study ◽

Decision Making Process ◽

Shared Decision ◽

Advanced Chronic Kidney Disease ◽

Conservative Care

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The Shared Decision-Making Process in the Pharmacological Management of Depression

The Patient: Patient-Centered Outcomes Research ◽

10.1007/s40271-019-00383-w ◽

2019 ◽

Vol 13 (1) ◽

pp. 23-30 ◽

Cited By ~ 2

Author(s):

Malcom Hopwood

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Decision Making Process ◽

Shared Decision ◽

Pharmacological Management

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Evaluation of a shared decision-making intervention for dialysis choice at four Danish hospitals: a qualitative study of patient perspective

BMJ Open ◽

10.1136/bmjopen-2019-029090 ◽

2019 ◽

Vol 9 (10) ◽

pp. e029090 ◽

Cited By ~ 4

Author(s):

Jeanette Finderup ◽

Jens Dam Jensen ◽

Kirsten Lomborg

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Decision Process ◽

Decision Aid ◽

Accurate Information ◽

Decision Making Process ◽

Shared Decision ◽

Dialysis Modality ◽

Individual Interviews ◽

Informed Preferences

ObjectiveTo evaluate the ‘Shared Decision-making and Dialysis Choice’ (SDM-DC) intervention with regard to patients’ experience and involvement.DesignSemistructured individual interviews and systematic text condensation for data analysis.SettingThe SDM-DC intervention was implemented and evaluated at four different hospitals in Denmark.ParticipantsA total of 348 patients had received the SDM-DC intervention, and of these 29 patients were interviewed.InterventionsSDM-DC was designed for patients facing a choice of dialysis modality. The available modalities were haemodialysis and peritoneal dialysis, either performed by patients on their own or with help from a healthcare professional. The intervention was tailored to individual patients and consisted of three meetings with a dialysis coordinator who introduced a patient decision aid named ‘Dialysis Choice’ to the patient.FindingsThe following were the four main findings: the decision was experienced as being the patient’s own; the meetings contributed to the decision process; ‘Dialysis Choice’ contributed to the decision process; and the decision process was experienced as being iterative.ConclusionsThe patients experienced SDM-DC as involving them in their choice of dialysis modality. Due to the iterative properties of the decision-making process, a shared decision-making intervention for dialysis choice has to be adapted to the needs of individual patients. The active mechanisms of the meetings with the dialysis coordinator were (1) questions to and from the patient, and (2) the dialysis coordinator providing accurate information about the options. The overview of options and the value clarification tool in the decision aid were particularly helpful in establishing a decision-making process based on informed preferences.

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Interprofessional Shared Decision Making in the NICU: A Survey of an Interprofessional Healthcare Team

Journal of Research in Interprofessional Practice and Education ◽

10.22230/jripe.2013v3n1a91 ◽

2013 ◽

Vol 3 (1) ◽

Cited By ~ 5

Author(s):

Sandra Dunn ◽

Betty Cragg ◽

Ian D. Graham ◽

Jennifer Medves ◽

Isabelle Gaboury

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Neonatal Intensive Care ◽

Influencing Factor ◽

Decision Making Process ◽

Healthcare Team ◽

Strong Positive Correlation ◽

Shared Decision ◽

Respiratory Therapists ◽

Interprofessional Healthcare

Background: The purpose of this study was to determine how different membersof an interprofessional (IP) team (nurses, physicians, respiratory therapists, and other professionals) perceived collaboration and satisfaction with the decisionmaking process across three decision types (triage, chronic condition management, values-sensitive decisions) in a neonatal intensive care unit (NICU).Methods and Findings: All members of the team at a tertiary NICU in Canada who consented to the study received a modified version of the Collaboration and Satisfaction about Care Decisions (CSACD) instrument. A total of 96 completed surveys were returned (response rate of 81.4). Collaboration scores were calculatedfor each participant, professional group, and the IP team. The Pearson product-moment correlation coefficient was used to investigate the relationship between perceived collaboration about decision making and satisfaction with the decision-making process. Inter-group comparisons across different decision types were also calculated. The majority of statistically significant differences in professional perspectives about decision making were about triage decisions. Nurses and respiratory therapists were more likely than other groups to feel the decision-making process was inadequate. There was a strong, positive correlation between perceived collaboration in decision making, satisfaction with the decision-making process, and satisfaction with the decision.Conclusions: Findings from this survey suggest that healthcare professionals' views differ about what constitutes optimum interprofessional shared decision making(IPSDM), and the decision type is an important influencing factor for IPSDM.

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Advance care planning preferences in Hispanic population with cancer in the Bronx.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.26_suppl.6 ◽

2016 ◽

Vol 34 (26_suppl) ◽

pp. 6-6

Author(s):

Jhosselini Cardenas Mori

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Medical Information ◽

Medical Center ◽

Treatment Options ◽

Cancer Center ◽

Decision Making Process ◽

Shared Decision ◽

Hispanic Patients ◽

Disclosure Of Diagnosis

6 Background: We aim to explore medical information-sharing and decision-making preferences of Hispanic patients in the Bronx. Methods: We are recruiting cancer patients who self-identify as Hispanic and are waiting at the oncology clinic at Montefiore Medical Center Cancer Center before an appointment. Results: To date we have interviewed 110 patients. The majority (60, 52.6%) preferred shared decision-making with their doctors, families or both, while 45 (39.5%) had an active decision-making style. A minority (9, 7.9%) had a passive decision-making style, deferring to their families and only 1 (0.9%) had a passive decision-making style deferring to the physician. The only demographic characteristic that was associated with decision-making preference was language; those who are English-speaking were more likely to endorse an active decision-making style (Chi2 = 7.06, p = 0.029) and less likely to endorse shared decision-making (Chi2 = 6.33, p = 0.042). The majority of patients agreed or strongly agreed that they wanted to hear all of the information regarding their diagnosis, treatment options, treatment expectation and treatment risks and benefits. Conclusions: These results confirm our hypothesis that most Hispanic patients prefer either an active or shared decision-making process rather than a passive decision-making process. Most patients prefer disclosure of diagnosis, prognosis and plan.

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