Who Cares About Care? Family Members as Moral Actors in Treatment Decision Making

2020 ◽  
Vol 20 (6) ◽  
pp. 80-82 ◽  
Author(s):  
Anna-Henrikje Seidlein ◽  
Sabine Salloch
Keyword(s):  
Decision Making ◽  
Family Members ◽  
Treatment Decision ◽  
Treatment Decision Making ◽  
Care Family

Treatment decision-making for older adults with cancer: A qualitative study

2020 ◽  
pp. 096973302094575
Author(s):  
Ni Gong ◽  
Qianqian Du ◽  
Hongyu Lou ◽  
Yiheng Zhang ◽  
Hengying Fang ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Cancer Patients ◽  
Family Members ◽  
Treatment Decision ◽  
Chinese Society ◽  
Decision Making Process ◽  
Treatment Decision Making ◽  
The Family ◽  
Older Cancer Patients

Background: Independent decision-making is one of the basic rights of patients. However, in clinical practice, most older cancer patients’ treatment decisions are made by family members. Objective: This study attempted to analyze the treatment decision-making process and formation mechanism for older cancer patients within the special cultural context of Chinese medical practice. Method: A qualitative study was conducted. With the sample saturation principle, data collected by in-depth interviews with 17 family members and 12 patients were subjected to thematic analysis. Ethical considerations: The study was approved by the ethics committees of Sun Yat-sen University. All participants provided verbal informed consent after being told their rights of confidentiality, anonymity, and voluntary participation. They had the right to refuse to answer questions and could withdraw at any time. Results: Three themes emerged: (1) complex process; (2) transformation of family decision-making power; and (3) individual compromise. Family members inevitably had different opinions during the long process of treatment decision-making for older cancer patients. The direction of this process could be regarded as an extension of the family power relationship. The patient usually compromised the decision to survive, which was made by family members. Conclusion: This study describes the treatment decision-making process of older cancer patients in the context of Chinese culture. The reasons underlying this process are related to the views on life and death and family values. An individual is a part of the family, which is often seen as the minimal interpersonal unit in Chinese society. It is significant that while emphasizing patient autonomy in the decision-making process, health professionals should also pay attention to the important roles of culture and family.

scholarly journals The considerations, experiences and support needs of family members making treatment decisions for patients admitted with major stroke: a qualitative study.

2020 ◽  
Author(s):  
Akila Visvanathan ◽  
Gillian Mead ◽  
Martin Dennis ◽  
William Whiteley ◽  
Fergus Doubal ◽  
...  
Keyword(s):  
Decision Making ◽  
Poor Prognosis ◽  
Family Members ◽  
Treatment Decision ◽  
Treatment Decisions ◽  
Treatment Preferences ◽  
Support Needs ◽  
State Of Health ◽  
Treatment Decision Making ◽  
Major Stroke

Abstract Background Treatment decision-making by family members on behalf of patients with major stroke can be challenging because of the shock of the diagnosis and lack of knowledge of the patient’s treatment preferences. We aimed to understand how, and why, family members made certain treatment decisions, and explored their information and support needs. Method Semi-structured interviews with family members (n=24) of patients with major stroke, within two weeks of hospital admission. Data were analysed thematically. Results Families’ approach to treatment decision-making lay on a spectrum according to the patient’s state of health pre-stroke (i.e. patient’s prior experience of illness and functional status) and any views expressed about treatment preferences in the event of life-threatening illness. Support and information needs varied according to where they were on this spectrum. At one extreme, family members described deciding not to initiate life-extending treatments from the outset because of the patients’ deteriorating health and preferences expressed pre-stroke. Information from doctors about poor prognosis was merely used to confirm this decision. In the middle of the spectrum were family members of patients who had been moderately independent pre-stroke. They described the initial shock of the diagnosis and how they had initially wanted all treatments to continue. However, once they overcame their shock, and had gathered relevant information, including information about poor prognosis from doctors, they decided that life-extending treatments were no longer appropriate. Many reported this process to be upsetting and expressed a need for psychological support. At the other end of the spectrum were family members of previously independent patients whose preferences pre-stroke had not been known. Family members described feeling extremely distressed at such an unexpected situation and wanting all treatments to continue. They described needing psychological support and hope that the patient would survive. Conclusion The knowledge that family members’ treatment decision-making approaches lay on a spectrum depending on the patient’s state of health and stated preferences pre-stroke may allow doctors to better prepare for discussions regarding the patient’s prognosis. This may enable doctors to provide information and support that is tailored towards family members’ needs.

What is the role of comorbidity, frailty, and functional status in the decision-making process for older adults with cancer and their family members, oncologists, and family physician?

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 92-92
Author(s):  
Martine Puts ◽  
Schroder Sattar ◽  
Kara McWatters ◽  
Katharine Lee ◽  
Michael Kulik ◽  
...  
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
Functional Status ◽  
Family Physician ◽  
Family Members ◽  
Family Physicians ◽  
Treatment Decision ◽  
Decision Making Process ◽  
Theory Approach ◽  
Treatment Decision Making

92 Background: Little is known about the treatment decision making process (TDMP) in older adults (OA) with cancer. The objective of this study is to develop a theoretical framework with the aim to improve the TDMP for this population. Methods: This is a mixed methods multi-perspective longitudinal study. OAs aged > 70 years with advanced prostate, breast, colorectal, or lung cancer, their family members, oncologists and family physicians are invited to participate in individual, semi-structured interviews. Each OA also completes a short survey to characterize their health, functional status, frailty level, decision-making preferences, and satisfaction with the TDMP. The sample is stratified on age (70-79 and 80+) to obtain data saturation for the oldest old. All interviews will be analyzed using the grounded-theory approach. Results: To date, 32 first interviews and 15 second interviews have been completed with 32 older adults, 21 family members and 12 family physicians and 7 cancer specialists. Interviews lasted between 10-60 minutes. Most older adults felt that they should have the final say in the treatment decision, but strongly valued their physician’s opinion. Most participants felt they received enough information, time and support from the oncologist to make their decision. About half the participants went to see their family physician to talk about the diagnosis and plan. Comorbidity and potential side-effects did not play a major role in the decision-making processes for patients and families but it did for oncologists. Family physicians reported they were not involved in treatment decisions, and they preferred more timely information about the patient. Conclusions: This study-in-progress is examining the TDMP from four different perspectives and examining changes over time in the TDMP. Patients and family members were generally satisfied with the treatment decision making process. Final results will be presented at the conference.

scholarly journals Physician Decision-Making Patterns and Family Presence: Cross-Sectional Online Survey Study in Japan

10.2196/12781 ◽  
2019 ◽  
Vol 8 (3) ◽  
pp. e12781
Author(s):  
Kenji Tsuda ◽  
Asaka Higuchi ◽  
Emi Yokoyama ◽  
Kazuhiro Kosugi ◽  
Tsunehiko Komatsu ◽  
...  
Keyword(s):  
Decision Making ◽  
Elderly People ◽  
Birth Rate ◽  
Online Survey ◽  
Artificial Ventilation ◽  
Family Members ◽  
Treatment Decision ◽  
Cross Sectional ◽  
Treatment Decision Making ◽  
Consciousness Disturbance

Background Due to a low birth rate and an aging population, Japan faces an increase in the number of elderly people without children living in single households. These elderly without a spouse and/or children encounter a lack of caregivers because most sources of care for the elderly in Japan are not provided by private agencies but by family members. However, family caregivers not only help with daily living but are also key participants in treatment decision making. The effect of family absence on treatment decision making has not been elucidated, although more elderly people will not have family members to make surrogate decisions on their behalf. Objective The aim is to understand the influence of family absence on treatment decision making by physicians through a cross-sectional online survey with three hypothetical vignettes of patients. Methods We conducted a cross-sectional online survey among Japanese physicians using three hypothetical vignettes. The first vignette was about a 65-year-old man with alcoholic liver cirrhosis and the second was about a 78-year-old woman with dementia, both of whom developed pneumonia with consciousness disturbance. The third vignette was about a 70-year-old woman with necrosis of her lower limb. Participants were randomly assigned to either of the two versions of the questionnaires—with family or without family—but methods were identical otherwise. Participants chose yes or no responses to questions about whether they would perform the presented medical procedures. Results Among 1112 physicians, 454 (40.8%) completed the survey; there were no significant differences in the baseline characteristics between groups. Significantly fewer physicians had a willingness to perform dialysis (odds ratio [OR] 0.55, 95% CI 0.34-0.80; P=.002) and artificial ventilation (OR 0.51, 95% CI 0.35-0.75; P<.001) for a patient from vignette 1 without family. In vignette 2, fewer physicians were willing to perform artificial ventilation (OR 0.59, 95% CI 0.39-0.90; P=.02). In vignette 3, significantly fewer physicians showed willingness to perform wound treatment (OR 0.51, 95% CI 0.31-0.84; P=.007), surgery (OR 0.35, 95% CI 0.22-0.57; P<.001), blood transfusion (OR 0.45, 95% CI 0.31-0.66; P<.001), vasopressor (OR 0.49, 95% CI 0.34-0.72; P<.001), dialysis (OR 0.38, 95% CI 0.24-0.59; P<.001), artificial ventilation (OR 0.25, 95% CI 0.15-0.40; P<.001), and chest compression (OR 0.29, 95% CI 0.18-0.47; P<.001) for a patient without family. Conclusions Elderly patients may have treatments withheld because of the absence of family, highlighting the potential importance of advance care planning in the era of an aging society with a declining birth rate.

scholarly journals Physician decision-making pattern and family presence: A randomized cross-sectional online vignette study in Japan (Preprint)

2018 ◽  
Author(s):  
Kenji Tsuda ◽  
Asaka Higuchi ◽  
Emi Yokoyama ◽  
Kazuhiro Kosugi ◽  
Tsunehiko Komatsu ◽  
...  
Keyword(s):  
Decision Making ◽  
Elderly People ◽  
Online Survey ◽  
Artificial Ventilation ◽  
Family Members ◽  
Treatment Decision ◽  
The Elderly ◽  
Cross Sectional ◽  
Treatment Decision Making ◽  
Consciousness Disturbance

BACKGROUND Japan faces increase of elderly people without children living in single households with the progress of low birthrate and aging population. The elderly without spouse and/or children result in lack of caregivers because most care for the elderly are not provided by private agencies but by family members in Japan. However, family caregivers are not only helpers of daily living but are key participants in the treatment decision-making. Effect of family absence on treatment decision-making has not been elucidated although more and more elderly people will not have family members who make surrogate decisions on behalf of incapacitated themselves. OBJECTIVE To understand the influence of family absence on treatment decision-making, we conducted a randomized, cross-sectional online survey with three hypothetical vignettes of patients. METHODS We conducted a randomised cross-sectional online survey among Japanese physicians using three hypothetical vignettes. The first vignette was about a 65-year-old man with alcoholic liver cirrhosis and the second about a 78-year-old woman with dementia, both of whom developed pneumonia with consciousness disturbance. The third vignette was about a 70-year-old woman with necrosis of her lower limb. Participants were randomly assigned either of the two versions of questionnaires—with family or without family—but otherwise identical. Participants chose yes or no responses to questions about whether they would perform the presented medical procedures. RESULTS Among 1112 physicians, 454 (40.8%) completed the survey and there were no significant differences in the baseline characteristics between groups. Significantly fewer physicians had a willingness to perform dialysis (odds ratio [OR], 0.55; P=0.002) and artificial ventilation (OR, 0.51; P<0.001) for a patient from vignette one, without family. Similarly, artificial ventilation was less intended in vignette two (OR, 0.59; P=0.02). In vignette three, significantly fewer physicians showed willingness to perform wound treatment (OR, 0.51; P=0.007), surgery (OR, 0.35; P<0.001), blood transfusion (OR, 0.45; P<0.001), vasopressor (OR, 0.49; P<0.001), dialysis (OR, 0.38; P<0.001), artificial ventilation (OR, 0.25; P<0.001) and chest compression (OR, 0.29; P<0.001) for a patient without family. CONCLUSIONS Elderly patients may sometimes be submitted to treatments withheld due to the absence of family, highlighting the potential importance of the advance care planning in the era of aging society with declining birthrate. CLINICALTRIAL None

scholarly journals The considerations, experiences and support needs of family members making treatment decisions for patients admitted with major stroke: a qualitative study.

2020 ◽  
Author(s):  
Akila Visvanathan ◽  
Gillian Mead ◽  
Martin Dennis ◽  
William Whiteley ◽  
Fergus Doubal ◽  
...  
Keyword(s):  
Decision Making ◽  
Poor Prognosis ◽  
Family Members ◽  
Treatment Decision ◽  
Treatment Decisions ◽  
Treatment Preferences ◽  
Support Needs ◽  
State Of Health ◽  
Treatment Decision Making ◽  
Major Stroke

Abstract Background Treatment decision-making by family members on behalf of patients with major stroke can be challenging because of the shock of the diagnosis and lack of knowledge of the patient’s treatment preferences. We aimed to understand how, and why, family members made certain treatment decisions, and explored their information and support needs. Method Semi-structured interviews with family members (n=24) of patients with major stroke, within two weeks of hospital admission. Data were analysed thematically. Results Families’ approach to treatment decision-making lay on a spectrum according to the patient’s state of health pre-stroke (i.e. patient’s prior experience of illness and functional status) and any views expressed about treatment preferences in the event of life-threatening illness. Support and information needs varied according to where they were on this spectrum. At one extreme, family members described deciding not to initiate life-extending treatments from the outset because of the patients’ deteriorating health and preferences expressed pre-stroke. Information from doctors about poor prognosis was merely used to confirm this decision. In the middle of the spectrum were family members of patients who had been moderately independent pre-stroke. They described the initial shock of the diagnosis and how they had initially wanted all treatments to continue. However, once they overcame their shock, and had gathered relevant information, including information about poor prognosis from doctors, they decided that life-extending treatments were no longer appropriate. Many reported this process to be upsetting and expressed a need for psychological support. At the other end of the spectrum were family members of previously independent patients whose preferences pre-stroke had not been known. Family members described feeling extremely distressed at such an unexpected situation and wanting all treatments to continue. They described needing psychological support and hope that the patient would survive. Conclusion The knowledge that family members’ treatment decision-making approaches lay on a spectrum depending on the patient’s state of health and stated preferences pre-stroke may allow doctors to better prepare for discussions regarding the patient’s prognosis. This may enable doctors to provide information and support that is tailored towards family members’ needs.

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