Surrogate Decision-making for Incompetent Elderly Patients: The Role of Informal Representatives

2012 ◽  
Vol 19 (1) ◽  
pp. 61-68 ◽  
Author(s):  
Sjef Gevers ◽  
Joseph Dute ◽  
Herman Nys

Abstract Informal or unofficial representation refers to the practice (more common in some European jurisdictions than in others), that persons not designed by a court or by the patient himself, make medical decisions on the patient’s behalf in case of their incompetence. If the law provides for this, it is usually next of kin (spouse, children, brothers and sisters, etc.) who are allowed to act in such a capacity. Informal representation raises several questions. Are family members always familiar with what their relative would have wished, ready to take responsibility, and not too much reigned by their emotions? The basic legal concern is whether there are sufficient procedural and other safeguards to protect the incompetent patient from representatives who do not serve their best interests. In addressing these issues, after a brief survey of the law in the Netherlands as compared with that in Belgium, Germany and England/Wales, we will argue that informal representation as such is not at variance with international and European standards. However, an ‘informal’ approach to surrogate decision-making should always go together with sufficient protection of the incompetent patient, including procedural safeguards with regard to the decision that the patient is incompetent, limits to the decision-making power of informal representatives and effective forms of conflict resolution.

Author(s):  
Ho-mun CHAN

LANGUAGE NOTE | Document text in Chinese; abstract also in English.本文討論末期病人的決策過程的三個模式,即個人主義、家長主義和家庭本位主義。個人主義過份偏重病人的抉擇,家長主義只強調從專業角度照顧病人的個人最佳利益,這兩個模式均會令家庭角色邊緣化。本丈認為家庭本位主義,更符合東方社會文化,從倫理角度來看亦較其他兩個模式可取。This paper critically examines the liberal, the medical paternalist, and the familial models of decision making for the terminally ill. It is argued that the liberal model is excessively patient centered while the medical paternalist model overemphasizes the role of the physician. The paper concludes that since both models marginalize the role of the family in the decision-making process, they are morally inadequate and not suitable for societies with strong family ethics, particularly those in Asia.The liberal model is predominant in the United States. According to this model, a competent patient can express in an advance directive her prior wish of how she is to be treated when she lapses into incompetency. In the absence of an advance directive or in cases where the directive is vague or ambiguous, the surrogate decision-making process will be invoked, which is normally a procedure in which the family makes the decision on the patient's behalf. In this process, the family serves to assist the incompetent patient to exercise her self-determination by figuring out and then following her counterfactual choice in accordance with the substituted judgment standard. If it is impossible to arrive at a decision by following this standard, the family, with the assistance of the physician, will follow the standard of best interests to promote the well-being of the patient. In sum, in the process of surrogate decision making, only the individual choice and interests of the patient are a matter of concern. Thus, the liberal model is entirely patient-centered. The role of the family is marginalized in the sense of being subordinated to the (previous or counterfactual) choice and interests of the patient. The family therefore becomes a "shadow" of the patient with no independent status and is deprived of its self-sufficiency.In the United Kingdom, medical paternalism is more influential. There is a preference for a code of practice to legislation for advance directives, and the prevalence of the best interest standard. Yet, unlike the liberal model, the best interests of the patient are not determined by the family in accordance with the standard of a reasonable person. Rather the doctor is expected to make decision for the patient in accordance with a responsible and competent body of relevant professional opinion in determining the patient's best interests. Though the family will often be consulted, the principal decision maker is the physician. So the role of the family is also marginal in this model.In Asian societies, e.g., Japan, Mainland China and Hong Kong, the family plays a fundamental role in the decision making for the terminally ill, so the model of familialism prevails. In these societies, it is common that the patient will not be informed directly of her terminal illness by the physician. The decision for the incompetent patient is regarded not as an individual but a family decision, and the dying process is viewed a sharing process, the last journey that the patient undergoes together with her significant others.In the familial model, the decision for a terminally ill patient is regarded not entirely as an individual matter because other members will be affected by the patient's choice. Should a son merely consider the wishes or the best interests of his father without considering the burden of care and the feelings of his mother while his father is going through the last stage of his life? Should the mother also consider the financial burden that her son might have to bear for his father if he were to be kept alive at all costs? Such issues would not have a place in the liberal and the medical paternalist models, for what matters is only the choice or the best interests of the patient. On the contrary, due considerations are given to these issues in the familial model, which makes it more plausible than the other two models.DOWNLOAD HISTORY | This article has been downloaded 15 times in Digital Commons before migrating into this platform.


2020 ◽  
Author(s):  
Masashi Tanaka ◽  
Kayoko Ohnishi ◽  
Aya Enzo ◽  
Taketoshi Okita ◽  
Atsushi Asai

Abstract Background Surrogate decision-making is expected to become more prevalent in Japanese clinical practice. In recent years, activities to promote advanced care planning (ACP) have gathered momentum, which may potentially affect the ways in which judgments are made in surrogate decision-making. The purpose of this study is to clarify the current judgment grounds on which surrogate decisions are made in Japan. Methods We adopted a qualitative research method that was based on semi-structured interviews to reveal the judgment grounds in surrogate decision-making involving critical, life-sustaining treatment choices in acute hospitals.  Results We received a list of 228 participants who met the inclusion criteria. Of these, we interviewed 15 participants. We analyzed the content of the 14 transcribed texts, eliminating one text that did not meet the inclusion criteria. We extracted a total of four core categories, 17 categories, 35 subcategories, and 55 codes for qualitative analysis of interviews regarding the judgement grounds in surrogate decision-making. The four core categories are as follows: Type 1 "Patient preference-oriented factor," Type 2 "Patient interest-oriented factor," Type 3 "Family preference-oriented factor," and Type 4 "Balanced patient/family preference-oriented factor." Type 4 was the reasoning related to an attempt to balance preferences of the patient and those of the surrogate decision-maker.  Conclusions This study revealed the current status of surrogate decision-making about important matters related to a patient’s life in Japan. Surrogate decision-makers base their decisions not only on the preferences and best interests of the patient, but on their own preferences as well. In the future, we believe that surrogate decisions-makers will be required to consider the judgment grounds from a more diverse perspective and that such attitudes should be ethically accepted. 


2021 ◽  
Vol 42 (Supplement_1) ◽  
pp. S134-S135
Author(s):  
Todd F Huzar ◽  
Monica L Gerrek ◽  
Daniel J Freet

Abstract Introduction Burn patients may present with an inability to communicate. In these cases, we need to rely on surrogates such as the Medical Power of Attorney (MPoA) or next of kin. A MPoA gives the agent the authority to participate in medical decision and in accordance with their wishes. The agent may consent to, refuse, withdraw, or withhold treatment, including life-sustaining interventions. At times, they may feel unable to participate in decision making without assistance (i.e. family members). The process can become more complicated and decision making can become “muddied” due to others influencing decisions. In our state, the MPoA is the proxy if the patient is unable to participate in decision making; however, there are cases when the patient doesn’t have an MPoA and the next of kin is the surrogate. In these cases, the next of kin would be consulted in the following order: spouse, adult children, parents, and nearest relatives. Some next of kin may not know the patient’s wishes complicating their care. Methods Two cases involving surrogates: #1: 60-year-old man with a history of HIV involved in a MVC and sustained 30% TBSA third and fourth degree burns to the face, torso, and extremities. The severity of his injuries and outcomes were discussed with his wife. She was not certain what her would want and she consulted her family because she did not know what to do; however, she knew that he would not want to live like this. After talking to the family, the kids “over-ruled” her. They wanted aggressive care despite the risks of complications and inability to perform ADLs because of his severe facial and hand burns. Case#2: 40 something year-old man with a history of schizophrenia that sustained 65% TBSA third and fourth degree burns to his face, neck, torso, and extremities due to self-immolation. The patient’s mother was identified, and it was explained to the patient’s mother that if he did survive his injury, he will not be able to perform any of his ADLs due his hand and facial burns. The patient’s mother wanted everything done for her son. Results Both patients were unable to perform ADLs due to their injuries. One patient was discharged for further inpatient care and the other was discharged home because his mother refused further care. The first patient was unable to communicate about his thoughts on his outcome. The other patient was discharged home. He was upset about what he looked like. He also told the staff that he will do his best to finish what he started. Conclusions Complex issues can arise when the patient cannot communicate their wishes and the next of kin plays the role of surrogate. The family may disagree and alter the decision-making process. After seeing this scenario play out and patients not being happy about their outcomes, the policies regarding surrogate decision making should be re-evaluated.


2017 ◽  
Vol 45 (3) ◽  
pp. 402-420
Author(s):  
Dana Howard

Within bioethics, two prevailing approaches structure how we think about the role of medical surrogates and the decisions that they must make on behalf of incompetent patients. One approach views the surrogate primarily as the patient's agent, obediently enacting the patient's predetermined will. The second approach views the surrogate as the patient's custodian, judging for herself how to best safeguard the patient's interests. This paper argues that both of these approaches idealize away some of the ethically relevant features of advance care planning that make patient preferences so inscrutable and surrogate decision-making so burdensome. It proposes a new approach to surrogate decision-making, the Fiduciary Agency Approach. On this novel approach, the surrogate has authority to not only act on the patient's behalf as the patient's agent but also to decide on the patient's behalf as the patient's fiduciary. One upshot of this new approach is that surrogates must sometimes go against the expressed dictates of the patients' advance directives not necessarily because doing so would be in the patient's best interest but rather because doing so would best represent the patients' will.


2020 ◽  
Author(s):  
Masashi Tanaka ◽  
Kayoko Ohnishi ◽  
Aya Enzo ◽  
Taketoshi Okita ◽  
Atsushi Asai

Abstract Background Surrogate decision-making is expected to become more prevalent in Japanese clinical practice. In recent years, activities to promote advanced care planning (ACP) have gathered momentum ,which may potentially affect the ways in which judgments are made in surrogate decision-making. The purpose of this study is to clarify the current judgment grounds on which surrogate decisions are made in Japan. Methods We adopted a qualitative research method that was based on semi-structured interviews to reveal the judgement grounds in surrogate decision-making involving critical, life-related choices in acute hospitals. Results We interviewed 15 participants. We analyzed the content of the 14 transcribed texts, eliminating one text that does not meet the inclusion criteria. We extracted a total of 4 core categories, 17 categories, 35 subcategories, and 55 codes as an analysis results of interviews regarding the judgment grounds in surrogate decision-making. The four categories are as follows: type 1“Patient preference-oriented factor”, type2“Patient interest-oriented factor”, type3“Family preference-oriented factor”,and type4 “Balanced patient/family preference-oriented factor”. Conclusions This study revealed the current status of surrogate decision-making in Japan: when making decisions about important matters related to a patient’s life, surrogate decision-makers base their decisions not only on the preferences and best interests of the patient, but on their own preferences as well. Included in the preferences of surrogate decision-makers were their own views of life and death, their values, and care burden. Given the cultural and social backgrounds in Japan, it remains unclear whether ACP can be properly reflected in judgment grounds in surrogate decision-making. It would be undesirable to base judgments solely on the principle of respect for autonomy or the principles of surrogate decision-making. In the future, we believe that surrogate decisions-makers will be required to consider the judgment grounds from a more diverse perspective and that such attitudes should be ethically accepted.


Author(s):  
Mark Aulisio

This article explores the ethics of surrogate decision-making and the issue of patient rights regarding end of life. More precisely, it considers the problems underlying surrogate decision-making, why it is so fraught with problems, and what can be done to address them. It first provides a historical background on surrogate decision-making and the rise of the patients’ rights movement by analyzing the landmark cases of Karen Quinlan and Nancy Cruzan. It then discusses the implications for surrogate decision-making of the success of the patient’s rights movement, spurred by Quinlan and Cruzan and championed in the rise of bioethics. The article concludes by offering some suggestions for rethinking the role of surrogates when it comes to making decisions for patients at the end of life.


2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Masashi Tanaka ◽  
Kayoko Ohnishi ◽  
Aya Enzo ◽  
Taketoshi Okita ◽  
Atsushi Asai

Abstract Background In the coming years, surrogate decision-making is expected to become highly prevalent in Japanese clinical practice. Further, there has been a recent increase in activities promoting advance care planning, which potentially affects the manner in which judgements are made by surrogate decision-makers. This study aims to clarify the grounds on which surrogate decision-makers in Japan base their judgements. Methods In this qualitative study, semi-structured interviews were conducted to examine the judgement grounds in surrogate decision-making for critical life-sustaining treatment choices in acute care hospitals. Results A total of 228 participants satisfied the inclusion criteria, and 15 were selected for interviews. We qualitatively analysed the content of 14 interview transcripts, excluding one that did not meet the inclusion criteria. Based on this analysis, we extracted 4 core categories, 17 categories, 35 subcategories, and 55 codes regarding judgement grounds in surrogate decision-making. The four core categories were as follows: patient preference-oriented factor (Type 1), patient interest-oriented factor (Type 2), family preference-oriented factor (Type 3), and balanced patient/family preference-oriented factor (Type 4). The Type 4 core category represented attempts to balance the preferences of the patient with those of the surrogate decision-maker. Conclusions Surrogate decision-makers based their decisions on important aspects related to a patient’s life, and they considered not only the patient’s preferences and best interests but also their own preferences. As the need for surrogate decisions will increase in the future, decision-makers will need to consider judgement grounds from a more diverse perspective.


2020 ◽  
Author(s):  
Masashi Tanaka ◽  
Kayoko Ohnishi ◽  
Aya Enzo ◽  
Taketoshi Okita ◽  
Atsushi Asai

Abstract BackgroundSurrogate decision-making is expected to become more prevalent in Japanese clinical practice. Recent years have seen an increase in activities to promote advance care planning (ACP), potentially affecting the manner in which judgments are made in surrogate decision-making. This study aimed to clarify judgment grounds on which surrogate decisions are made in Japan.MethodsThis qualitative study was based on semi-structured interviews regarding judgment grounds in surrogate decision-making for critical life-sustaining treatment choices in acute hospitals.  ResultsA total of 228 participants met the inclusion criteria, and 15 were selected for interviews. We qualitatively analyzed the content of 14 interview transcripts, excluding one which did not meet the inclusion criteria. Based on this analysis, four core categories, 17 categories, 35 subcategories, and 55 codes regarding judgement grounds in surrogate decision-making were extracted. The four core categories were as follows: Patient preference-oriented factor (Type 1); Patient interest-oriented factor (Type 2); Family preference-oriented factor (Type 3); and Balanced patient/family preference-oriented factor (Type 4). The Type 4 core category represented attempts to balance preferences of the patient with those of the surrogate decision-maker. ConclusionsSurrogate decision-makers based their decisions on important matters related to a patient’s life not only on the preferences and best interests of the patient, but also on their own preferences. As the need for surrogate decisions increase in the future, decision-makers will need to consider judgment grounds from a more diverse perspective.


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