Patient Self-Determination Research Articles

Patient autonomy and participation in end-of-life decision-making: An interpretive-systemic focus group study on perspectives of Asian healthcare professionals.

Asia's first national advance care planning (ACP) program was established in Singapore in 2011 to enhance patient autonomy and self-determination in end-of-life (EoL) care decision-making. However, no known study has examined the extent to which ACP in Singapore successfully met its aims. The purpose of the current study was to examine the attitudes of local healthcare professionals on patients' autonomy in decision-making at the EoL since they strongly influence the extent to which patient and family wishes are fulfilled. Guided by the Interpretive-Systemic Framework and Proctor's conceptual taxonomy of implementation research outcomes, an interview guide was developed. Inquiries focused on healthcare professionals' attitudes towards ACP, their clinical experiences working with patients and families, and their views on program effectiveness. Sixty-three physicians, nurses, medical social workers, and designated ACP coordinators who were actively engaged in ACP facilitation were recruited from seven major hospitals and specialist centers in Singapore through purposive sampling. Twelve interpretive-systemic focus groups were conducted, recorded, transcribed, and analyzed using a thematic analysis. The extent to which patients in Singapore can exert autonomy in EoL care decision-making is influenced by five themes: (i) collusion over truth-telling to patient, (ii) deferment of autonomy by patients, (iii) negotiating patient self-determination, (iv) relational autonomy as the gold standard and (v) barriers to realization of patient choices. Healthcare practitioners in Asian communities must align themselves with the values and needs of patients and their family and jointly make decisions that are consistent and congruent with the values of patients and their families. Sensitivity towards such cross-cultural practices is key to enhancing ACP awareness, discourse, and acceptability in Asian communities.

Legal policy challenges in withdrawal of dialysis treatment in Japan

Abstract Issue/problem In 2017, Japanese dialysis patients and kidney transplant cases numbered roughly 330,000 and 1,700, respectively. In March 2019, a patient died after a physician terminated her kidney dialysis at a hospital in Tokyo. The Tokyo Metropolitan Government and the Japanese Society for Dialysis Therapy (JSDT) investigated the case, questioning the patient’s terminal status and desire to withdraw her request to terminate dialysis. Description of the problem No Japanese law addresses treatment withdrawal, but several court decisions and the Ministry of Health, Labor and Welfare’s process guidelines and JSDT guidelines address treatment withdrawal from terminal patients. We examined relevant court decisions and guidelines, identifying three legal policy issues that may impact legal policy discussions on treatment withdrawal in other countries, regardless of the enactment status of such laws. Results First, the patient was not “terminally ill” as defined by the court rulings and guidelines. Second, a clear decision based on appropriate informed consent from the patient seemed absent, violating the court rulings and guidelines. Third, the physician’s judgment of patient competency for decision-making may have been missing. Lessons We considered problems beyond the court rulings and guidelines by focusing on the patient’s right to self-determination and treatment refusal in other countries. The Patient Self-Determination Act and the Patient’s Bill of Rights (US) as well as court rulings and the NHS Charter (UK) guarantee such rights, and collectively enable competent patients in the US, UK, and elsewhere to refuse dialysis even if they are not terminal. Japanese legislation does not guarantee such patient rights or the explicit allowance/prohibition of treatment withdrawal, regardless of the patient’s terminal status; enactment of such laws should be considered. Key messages We identified legal ambiguity due to a lack of the patient’s right to both self-determination and treatment refusal. This could impact the international discussion on dialysis treatment withdrawal.

연명의료결정법과 환자자율성 증진에 관한 문제제기: 미국 환자자기결정권 제정 이후 논쟁분석*,**

In February 2018 the “Act on Decisions on Life-sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life” (hereafter the “Life-Sustaining Treatment Decisions Act”) went into effect in South Korea.” In order learn the lesson for Korean physicians’ practice in end-of-life care, we reviewed the debates surrounding the passage of similar legislation in the US. In particular, we examined the debates concerning the “Patient Self-Determination Act,” which was implemented in the US in 1991. We systemically searched for related medical articles on PubMed online and reviewed 17 articles that were retrieved through this search. One of the main findings of this review is that most of the articles expressed support for the Patient Self-determination Act on the grounds that it would enhance patient autonomy. In contrast with this, the Korean medical society criticized the Life-Sustaining Treatment Decisions Act on the grounds that it would undermine physician authority and limit respect for patient autonomy. This reflects the fact that Korean physicians are unfamiliar or uncomfortable with the idea of respecting patient autonomy as a way of furthering the patient’s best interests. In this article I argue that the reasons for welcoming the provisions of the Life-Sustaining Treatment Decisions Act are not only legal, but also medical and ethical: the law can improve the end-of-life care that is given in healthcare settings. However, in order to achieve this goal, patients must be fully informed about their rights and physicians should initiate discussions about advance care planning, as part of general health care, before serious illness arises.

MON-193 Androgen Insensitivity Syndrome: A Tale of Two Tails

Introduction: In 1953, the term testicular feminization syndrome was introduced in a cohort of male pseudohermaphrodites. Since its first report, a better understanding of this disorder of sex development (DSD) has been described. Complete Androgen Insensitivity Syndrome (CAIS), an X-linked DSD in 46, XY has an incidence of 1-5 in 100,000 genetic males. Management is individualized and revolves around a multidisciplinary team including surgeons, endocrinologists, geneticists, medical ethics, and clinical psychologists. While studies suggest assimilation of a female identity in CAIS, gender dysphoria (GD) has been reported. Failure to ask people about their gender identity (GI) can lead to the assumption that one identifies with the gender assigned at birth, missing an opportunity to detect GD. Clinical Case: A 63-year-old gender non-conforming with major depressive disorder, hypertension and hypothyroidism was evaluated in 2009 for CAIS. A history of bilateral inguinal hernia repair at age 2 and primary amenorrhea did not raise concerns early in life for DSD, until a routine physical during their early 20s led to the diagnosis. They reported feeling uncomfortable wearing dresses as young as 3 years old, struggling with relationships, low libido, fatigue and ongoing suicidality. A physical exam included developed breasts (Tanner stage V), and no palpable masses on abdomen. Initial labs showed: FSH 4.7 mIU/mL (1.4-18.1), LH 10.2 mIU/mL (1.2-8.6), estradiol 47 pg/mL (0-39), and total testosterone 2.2 ng/mL (1.75-7.81). MRI abdomen/pelvis showed a blind end vagina, no uterus and retained gonadal tissue bilaterally (cysts/follicles, largest 1.8cm on the right and 5.2x5.3cm on the left). Karyotype analysis showed 46, XY. Androgen receptor gene analysis was not available. Urology recommended gonadectomy followed by hormone replacement therapy but patient was not interested. Despite a multidisciplinary approach, GI or GD was never addressed throughout the 10-year follow up. A female gender identification was assumed and the patient did not volunteer this information because of a history of victimization and mistrust of the medical community. Conclusions: Available literature on AIS often fails to report gender identity in individuals living with a DSD. It is unclear whether this is due to patients’ fear of being refused medical care on this basis, or alternatively, due to providers’ oversight of crucial conversations. Case reports have described GD in DSD. Failure to identify or address GD by assuming GI can have a serious impact in patients' overall wellbeing. Patients with GD have been described to have a high risk of suicide, further underscoring the need for support from family, friends and providers. Endocrinologists should have these conversations in order to identify and appropriately address GD, and facilitate patient autonomy and self-determination.

Competence to Consent and Its Relationship With Cognitive Function in Patients With Schizophrenia.

Decisional capacity to consent is an emerging ethical and legal concept, and is closely related to self-determination of patients facing important medical decisions or research participations. Recently, the MacArthur Competence Assessment Tool (MacCAT), a semi-structured interview consisting of four dimensions (Understanding, Appreciation, Reasoning, and Expression of a Choice), was developed to assess the decisional capacity. Decision-making capacity in a group of patients with schizophrenia, as measured by the MacCAT, has been shown to be impaired in comparison with healthy control people. However, this does not necessarily mean the presence of impaired decisional capacity in all cases. Considering the real-world practice of obtaining informed consent from patients with schizophrenia, it is important to evaluate the relationship between psychopathological features and decisional capacity of the illness. Negative symptoms of schizophrenia have been demonstrated to be related to the ability to understand information relevant to the decision, reason rationally, and appreciate a situation and its consequences. On the other hand, positive symptoms, such as delusions and hallucinations have been an inconsistent correlate of poor capacity. Furthermore, some studies indicate that impairment of cognitive function, a core symptom of schizophrenia, could be more largely associated with decisional capacity than positive and negative symptoms. Therefore, it is reasonable to assume cognitive enhancement would enlarge the capacity to consent and promote autonomy in medical treatment and research participation in patients with schizophrenia. Further studies are warranted to elucidate this and related issues.

Ethical and legal consideration on medical realities and ethical debates about withholding or withdrawing treatment in end-of-life care

It is natural for all human beings to die; hence, death is an inevitable event. However, advances in medical technology are changing the meaning of natural death. These advanced treatments provide the capability to intervene at the time of death and to reshape the circumstances around natural death, by sustaining human life. However, it is extremely difficult to judge when treatment is futile for the patient's best interests. It is therefore recommended to make time to discuss the concept of medical futility during the course of caring for a critically ill patient. Despite the expectations and efforts of the patient, the patient's family, and medical staff, the patient will eventually, have a 'hopeless' medical condition. Most discussions about decision-making in end-of-life treatment have neen ethical debates focused on the patient's self-determination and best interest in the context of concepts such as euthanasia or death with dignity. However, such discussions are insufficient for resolving the wide variety of circumstances that occur in clinical settings. Instead, the various ethical dilemmas inherent to end-of-life care should be approached by educating medical teams, patients, and their families about how to recognize medical futility. Furthermore, it is important to optimize the balance between the rights of patients and the responsibility of physicians.

Outcomes Comparison of Enculturating Advance Directives Process at a Health System.

The Center for Medicare and Medicaid Services requires organizations to comply with the Patient Self-Determination Act by having processes that inform patients about their rights to execute an advance directive (AD) and engage in shared decision-making. The aim of this study was to compare AD data from a previous study (1999–2002) to a postenculturation (2011–2015) of a structured process for documented patient’s preferences. Second, to conduct a descriptive, bivariate analysis of the enculturated structured ADs process during 2011 and 2015. This descriptive, comparative analysis included 500 random patients from four hospitals, and the enculturated descriptive analysis included 302 patients from six hospitals. Comparisons showed less no ADs and a greater institutional ADs post compared with pre (p < .05). Fifty-four percent of patients from 2011 to 2015 had an AD, and none of them had resuscitative measures when Do-Not-Resuscitate status was ordered. This enculturated process which includes education for health-care professionals and the community facilitates optimal patient, family-centered care.

Current Engagement in Advance Care Planning in Japan and Its Associated Factors.

Using the Ministry of Health, Labour and Welfare national data on perspectives toward medical care at the end of life, this study examined the current status of engagement in advance care planning (ACP) activities among physicians and nurses in Japan and associated factors. Only 28.7% of physicians and 27.6% of nurses answered that they were engaging their patients/clients in ACP. Multinomial regression analysis revealed that more frequent involvement in caring for dying patients was associated with ACP engagement for both physicians and nurses. Increased years of clinical practice experience and working in a hospital were associated with decreased likelihood of nurses’ ACP engagement. Completion of training designed to promote patient self-determination at the end of life was associated with both physicians’ and nurses’ ACP engagement. It is recommended that health care professionals be encouraged to complete such training to promote patients’ autonomy through ACP.

Patient self-determination act of Taiwan

Patient self-determination act of Taiwan

Eliminating Liability for Informed Consent to Medical Treatment

The legal doctrine of informed consent, which imposes tort liability for failure to disclose the risks, benefits, and alternatives of a proposed medical intervention, is often criticized for emphasizing ritual over relationships, contributing to the deterioration of the doctor-patient relationship by encouraging the practice of defensive medicine. This article considers a rather radical response to the allegations that the tort of informed consent does not serve the lofty goal of protecting patient self-determination by ensuring that treatment decisions are voluntary and informed: the elimination of liability for failure to provide informed consent to medical treatment. In doing so, it evaluates the rationale and procedure for abolishing a common law private right of action for informed consent, as well as potential alternatives to tort liability for failure of informed consent to medical treatment. The article concludes that the time has not come for a wholesale elimination of the private right of action for informed consent to treatment. Abolishing liability for informed consent in treatment will not only eliminate the deterrent effect for potential bad actors, but it would also remove recourse for those who have suffered harm due to a failure of informed consent.

The Art of Goodbye: Medicare Covers Advance Care Planning

This 4-page document is part of a series which addresses end-of-life concerns, entitled The Art of Goodbye. The publication discusses the Patient Self-Determination Act, advance care planning, and communication about advance care planning. Written by Lynda Spence, and published by the UF/IFAS Department of Family, Youth and Community Sciences, July 2018. http://edis.ifas.ufl.edu/fy1471

Advance Directives Information Delivery in Medicare/Medicaid-Funded Agencies: An Exploratory Study

To encourage citizens to plan their end-of-life care to protect their autonomy, Congress passed the Patient Self-Determination Act (PSDA) in 1990. Under the PSDA, all Medicare/Medicaid-funded agencies are required to ask if all the patients, upon admission, have advance directives (ADs). If they have not formulated an AD, agencies need to inform that they have a right to do so and provide them with the written information. Although this is required by law, there is no universal procedure or set standard approach to deliver the information to patients in these agencies. It is often unclear who provides and explains information on ADs, and what materials are provided. The purpose of this study was to understand the procedures and challenges presented in the delivery of information about ADs in agencies in response to the PSDA requirements. Using a case study approach, semi-structured interviews with personnel in nine agencies were analyzed and three overarching themes were identified: organizational procedures, staff interactions, and staff perceptions. The findings indicated that there is a need for AD-specific training for staff responsible for delivering AD information to their clients. Implementation of a formalized procedure/guidelines for information delivery would be helpful to maintain quality standards across agencies.

Competency Is Key in Autonomy Regarding End-of-Life Care Decisions

Back to table of contents Previous article Next article Professional NewsFull AccessCompetency Is Key in Autonomy Regarding End-of-Life Care DecisionsMark MoranMark MoranSearch for more papers by this authorPublished Online:6 Jun 2018https://doi.org/10.1176/appi.pn.2018.5a26AbstractCase law and research on the desire to die by patients with terminal illness points to a role for psychiatrists who are consulting on or treating patients with terminal illness that may be far more nuanced than traditionally understood. Ellen DallagerOutlining that evolution during a symposium at APA’s 2017 Annual Meeting in San Diego, Rebecca Brendel, M.D., J.D., a consultant to APA’s Ethics Committee, cited as crucial the 1990 Supreme Court case Cruzan v. United States, establishing that patients have broad rights of self-determination that extend to end-of-life care, and the subsequent passage of the 1990 Patient Self-Determination Act. In those two landmark cases, patient autonomy emerged as one cornerstone in the patient’s right to make end-of-life care decisions or to designate a health care proxy to do so. “Since a patient’s competency to make decisions is central to autonomy, consultation-liaison psychiatrists became involved in this—not just because these were for the most part medically ill patients in the hospital, but because we are used to doing capacity evaluations on a daily basis for all kinds of medical questions,” Brendel said. Predictably, discussion about end-of-life care options would be extended from withholding and withdrawing treatment to more affirmative plans by patients to determine the timing and manner of one’s death. In 1997, Oregon passed the Death With Dignity Act, the first state to make it legal for physicians to prescribe a lethal dose of medication to a terminally ill patient wishing to end his or her life. Meanwhile, research on the desire to die by patients with life-threatening illness was evolving. A significant body of early research in consultation-liaison psychiatry (primarily with cancer patients) appeared to establish that a desire to die was highly correlated with treatable major depression. This work was pioneered by, among others, consultation-liaison psychiatrists William Breitbart, M.D., Linda Ganzini, M.D., and Jimmie Holland, M.D.Brendel said three essential points stand out from that work:The difference between patients with advanced cancer who had a desire to hasten death and those who did not was depression.If these patients were treated for depression, they no longer desired to hasten their death.People with depression made more restrictive advance directives about what they would want done for them at the end of life than those who were not depressed, and if their depression was treated, they would reverse those restrictive advance directives.However, the picture regarding the relationship between depression and all desires to die began to appear less clear, she said, among patients with neurodegenerative disease (such as amyotrophic lateral sclerosis) who may be able to say at what point in their disease they would like to die, but who may not necessarily be depressed. Also variable and complex are patients with spinal cord injury. “If you talked to newly quadriplegic patients in the period immediately following the spinal cord injury, there was a high desire to die early on and a recognition, for those patients who were ventilator-dependent, that they could make that decision not to be on life-sustaining treatment,” Brendel said. “The problem with that is that if you look at them a year later and talk to these patients about what their quality of life is, they will still physically not be what they were [prior to the injury], but they will tell you, on average, that their quality of life is much higher in many, if not most, respects than it had been prior to their injury.”Now, with data from states such as Oregon that permit physician-assisted death, it has become even clearer that while depression may be present in the severely ill, many patients who desire to control the timing and manner of their death in the setting of terminal illness are not depressed. So, how do psychiatrists, charged with the task of assessing competence or treating concomitant mental illness in terminally ill patients, proceed in an era when the law increasingly recognizes that patients have claims about choosing the timing and manner of their death? “First, we have to see that not all desires to die are suicide in the traditional view—that by definition they result from mental illness and should be prevented,” she said. “But we also cannot and must not retreat from engaging in this dialogue. If we say that just because a patient has a legal right to die, he or she is thereby entitled to make that decision, then we abdicate our professional responsibility to help our patients both in the work of living and in the work of dying.” ■ ISSUES NewArchived

Encounters With Health-Care Providers and Advance Directive Completion by Older Adults.

The Patient Self-Determination Act (PSDA) requires hospitals, home health agencies, nursing homes, and hospice providers to offer new patients information about advance directives. There is little evidence regarding whether encounters with these health-care providers prompt advance directive completion by patients. To examine whether encounters with various types of health-care providers were associated with higher odds of completing advance directives by older patients. Logistic regression using longitudinal data from the 2012 and 2014 waves of the Health and Retirement Study. Participants were 3752 US adults aged 65 and older who reported not possessing advance directives in 2012. Advance directive was defined as a living will and/or durable power of attorney for health care. Four binary variables measured whether participants had spent at least 1 night in a hospital, underwent outpatient surgery, received home health or hospice care, or spent at least one night in a nursing home between 2012 and 2014. Older adults who received hospital, nursing home, or home health/hospice care were more likely to complete advance directives. Outpatient surgery was not associated with advance directive completion. Older adults with no advance directive in 2012 who encountered health-care providers covered by the PSDA were more likely to have advance directives by 2014. The exception was outpatient surgery which is frequently provided in freestanding surgery centers not subject to PSDA mandates. It may be time to consider amending the PSDA to cover freestanding surgery centers.

Do Conscience Clauses Violate Patients’ Rights?

Do Conscience Clauses Violate Patients’ Rights?

Relational autonomy, care, and Jehovah's Witnesses in Germany.

Drawing from an ethics of care, relational approaches to autonomy have recently emerged in bioethics. Unlike individual autonomy with its emphasis on patients' rights, choice, and self-determination which has been the hallmark of bioethics consistent with the ideology of individualism in neoliberal democracies in Western countries, relational autonomy highlights the relatedness, interdependency, and social embeddedness of patients. By examining the mediating role that male Hospital Liaison Committee members in Germany play in facilitating care that supports Jehovah's Witnesses' refusal of blood transfusions, this article moves beyond 'dyadic relations' and contexts of caregiving. It also contributes to a deeper understanding of care and relational conceptualizations of Witness patients' autonomy globally.

Cultural Aspects of End-of-Life Care Planning for African Americans: An Integrative Review of Literature.

Advance directive completion rates among the general population are low. Studies report even lower completion rates among African Americans are affected by demographic variables, cultural distinctives related to patient autonomy, mistrust of the health care system, low health literacy, strong spiritual beliefs, desire for aggressive interventions, importance of family-communal decision making, and presence of comorbidities. An integrative review was conducted to synthesize nursing knowledge regarding cultural perspectives of end-of-life and advance care planning among African Americans. Twenty-four articles were reviewed. Nurses educate patients and families about end-of-life planning as mandated by the Patient Self-Determination Act of 1991. Implementation of advance directives promote patient and family centered care, and should be encouraged. Clinicians must be sensitive and respectful of values and practices of patients of diverse cultures, and initiate conversations with open-ended questions facilitating patient trust and sharing within the context of complex beliefs, traditions, and lifeways.

Text Network Analysis of Newspaper Articles on Life-sustaining Treatments

Purpose: This study tried to understand discourses of life-sustaining treatments in general daily and healthcare newspapers. Methods: A text-network analysis was conducted using the NetMiner program. Firstly, 572 articles from 11 daily newspapers and 258 articles from 8 healthcare newspapers were collected, which were published from August 2013 to October 2016. Secondly, keywords (semantic morphemes) were extracted from the articles and rearranged by removing stop-words, refining similar words, excluding non-relevant words, and defining meaningful phrases. Finally, co-occurrence matrices of the keywords with a frequency of 30 times or higher were developed and statistical measures―indices of degree and betweenness centrality, ego-networks, and clustering―were obtained. Results: In the general daily and healthcare newspapers, the top eight core keywords were common: “patients,” “death,” “LST (life-sustaining treatments),” “hospice palliative care,” “hospitals,” “family,” “opinion,” and “withdrawal.” There were also common subtopics shared by the general daily and healthcare newspapers: withdrawal of LST, hospice palliative care, National Bioethics Review Committee, and self-determination and proxy decision of patients and family. Additionally, the general daily newspapers included diverse social interest or events like well-dying, euthanasia, and the death of farmer Baek Nam-ki, whereas the healthcare newspapers discussed problems of the relevant laws, and insufficient infrastructure and low reimbursement for hospice-palliative care. Conclusion: The discourse that withdrawal of futile LST should be allowed according to the patient’s will was consistent in the newspapers. Given that newspaper articles influence knowledge and attitudes of the public, RNs are recommended to participate actively in public communication on LST.

Well-Meaning Cheerleading Can Throw the Game for PA/LTC Residents

Well-Meaning Cheerleading Can Throw the Game for PA/LTC Residents

Impact evaluation of an Independent Mental Health Advocacy (IMHA) service in a high secure hospital: a co-produced survey measuring self-reported changes to patient self-determination

PurposeThe purpose of this paper is to measure any impact that IMHA support had on patient’s self-determination.Design/methodology/approachThe study used a questionnaire design, co-produced with patients to ensure question relevance, accessibility and ease of use. The theoretical framework used by the study was Deci & Ryan’s empirically validated self-determination theory (SDT) as it is predictive, across cultures and domains (including healthcare), of psychological well-being and self-determined action following the satisfaction of three fundamental human needs for autonomy, competence and relatedness.FindingsFollowing advocacy support, increased self-determination, was found in 70 percent of the patients surveyed. In this study, increased self-determination was inferred by patients’ subjective responses to survey questions which measured satisfaction with contextual aspects of autonomy, competence and relatedness. The extensive SDT research has identified that the satisfaction of these needs is essential for psychological well-being and a prerequisite for self-determined and motivated action. Research has also linked psychological needs fulfilment to the personal recovery journey for those diagnosed with a mental illness.Originality/valueAlthough limited, qualitative research evidence has identified that IMHA support helps to empower their partners (referred to in the text as patients or patient partners) to be more self-determined. This is an important finding, particularly for those patient partners detained under the Mental Health Act, given the often disempowering and autonomy reducing nature of mental illness and the characteristics of detained environments. However, a gap in the literature exists for quantitative outcome data identifying the specific impact that IMHA support has for patients. Obtaining measurable outcome data which seek to understand how and why Independent Mental Health Advocacy support impacts its patient partners is essential for developing and validating outcome measures that can lead to best practice improvements in IMHA service delivery. Furthermore, this knowledge is pivotal in optimizing IMHA services’ potential for empowering patients and providing commissioners with the much-needed evidence for effective commissioning of such services.