Context: Providing patient care at the end of a patient's life is a humbling and sacred experience for both patient and provider. Without a truthful and meaningful conversation about end-of-life care preferences, the care that is delivered may not be the care that the patient prefers.
bjectives: Determine if there is a relationship between level of training, confidence, and presence of decisional conflict in making an accurate prognosis for 2 standardized cases. Additionally, we evaluated the correctness of the prognosis as measured against survival outcomes for patients with similar diagnoses.
Methods: Decisional conflict was measured with the SURE tool, a validated 4-item tool that has been used in assessing for the presence of decisional conflict.
Results: Following analysis of data, it was found that providers with no decisional conflict were much more likely to be attendings with more than 5 years' experience. Providers were more conflicted overall when confronted with a case with a more grave prognosis. It was determined that providers with a lower level of training were more likely to have decisional conflict.
Conclusions: Provider confidence increases and decisional conflict decreases as one increases their level of training. However, the degree in which the provider is correct in their prognosis does not change as one increases their level of training. These findings have broad implications on patients, providers, and the health-care system.
OBJECTIVES: Physicians' decision-making in end-of-life (EOL) care includes many medical, ethical and juridical aspects. We studied the changes of these decisions over time and factors influencing them.
METHODS: A postal survey including two hypothetical patient scenarios was sent to 1258 Finnish physicians in 2015 and to 1182 in 1999. The attitudes, values and background factors of the physicians were also enquired.
RESULTS: The response rate was 56%. The physicians' decisions to choose palliative approaches over active or intensive care increased from 1999 to 2015 when a terminally ill prostate cancer patient had probable iatrogenic gastrointestinal bleeding (53% vs 59%, p=0.014) and waited to meet his son (46% vs 60%, p<0.001) or a minister (53% vs 71%, p<0.001). Training in EOL care independently increased palliative approaches. Patient's benefit (96% vs 99%, p=0.001), ethical values (83% vs 93%, p<0.001) and patient's (68% vs 86%, p<0.001) or physician's (44% vs 63%, p<0.001) legal protection were considered more influential to the decisions in 2015, while the family's benefit was regarded as less influential to the decisions than it was in 1999 (37% vs 25%, p<0.001). Physicians were more willing to give a hospice voucher for an advanced breast cancer patient in 2015 (34% vs 58%, p<0.001).
CONCLUSIONS: Our findings may reflect the transition to a stronger emphasis on patient-centred care and a stronger tendency to avoid futile therapies that have only short-term goals. The results highlight that education in all aspects of EOL care should be incorporated into the post-graduate training of medical specialties that take care of dying patients.
Objective: Home-based palliative care has been suggested to be a beneficial model of care. Whether it is a desirable option of the family and patients is arguable. This study, therefore, aimed to explore the experience of the family the palliative cancer patients in their decision-making process of taking care of the patients at home.
Methods: This study was a qualitative study using descriptive phenomenology approach. Data were obtained through in-depth interviews with 10 family member of the palliative cancer patients.
Results: three themes emerged in this study: (1) family's limited knowledge and skill to take care of the palliative cancer patients at home, (2) family wish the patients to stay being treated in the hospitals, (3) family depends on the hospital for palliative cancer patients.
Conclusions: Nurses should evaluate family preference, readiness, and capabilities in taking care of palliative cancer patients at home. Nurses should collaborate with the health care providers in assisting the family in their decision making to keep the palliative care patients at the hospital or take them home.
Background: Religion and/or spirituality are important values for many parents of critically ill children; however, how religion and/or spirituality may influence which treatments parents accept or decline for their child, or how they respond to significant events during their child's illness treatment, remains unclear.
Objective: to summarize the literature related to the influence of parents' religiosity or spirituality on decision making for their critically ill child.
Design: Integrative review, using the Whittemore and Knafl approach.
Setting/Subjects: Data were collected from studies identified through PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL plus), Embase, Scopus, and PsychInfo. Databases were searched to identify literature published between 1996 and 2016.
Results: Twenty-four articles of variable methodological quality met inclusion criteria. Analysis generated three themes: parents' religiosity or spirituality as (1) guidance during decision making, (2) comfort and support during the decision-making process, and (3) a source of meaning, purpose, and connectedness in the experience of decision making.
Conclusion: This review suggests that parents' religiosity and/or spirituality is an important and primarily positive influence on their decision making for a critically ill child.
BACKGROUND: The concept of advance care planning is largely derived from Western countries. However, the decision-making process and drivers for choosing palliative care in non-Western cultures have received little attention.
AIM: To explore the decision-making processes and drivers of receiving palliative care in advance care planning discussions from perspectives of advanced cancer patients, families and healthcare professionals in northern Taiwan.
METHOD: Semi-structured qualitative interviews with advanced cancer patients, their families and healthcare professionals independently from inpatient oncology and hospice units. Thematic analysis with analytical rigour enhanced by dual coding and exploration of divergent views.
RESULTS: Forty-five participants were interviewed (n = 15 from each group). Three main decision-making trajectories were identified: (1) 'choose palliative care' was associated with patients' desire to reduce physical suffering from treatments, avoid being a burden to families and society, reduce futile treatments and donate organs to help others; (2) 'decline palliative care' was associated with patients weighing up perceived benefits to others as more important than benefits for themselves; and (3) 'no opportunity to choose palliative care' was associated with lack of opportunities to discuss potential benefits of palliative care, lack of staff skill in end-of-life communication, and cultural factors, notably filial piety.
CONCLUSION: Choice for palliative care among advanced cancer patients in Taiwan is influenced by three decision-making trajectories. Opinions from families are highly influential, and patients often lack information on palliative care options. Strategies to facilitate decision-making require staff confidence in end-of-life discussions, working with the patients and their family while respecting the influence of filial piety.
OBJECTIVES: Research indicates that the increasing population of over 25 million people in the United States who have limited English proficiency experience differences in decision-making and subsequent care at end of life in the ICU when compared with the general population. The objective of this study was to assess the perceptions of healthcare team members about the factors that influence discussions and decision-making about end of life for patients and family members with limited English proficiency in the ICU.
DESIGN: Qualitative study using semistructured interviews with ICU physicians, nurses, and interpreters.
SETTING: Three ICUs at Mayo Clinic Rochester.
SUBJECTS: Sixteen ICU physicians, 12 ICU nurses, and 12 interpreters.
MEASUREMENTS AND MAIN RESULTS: We conducted 40 semistructured interviews. We identified six key differences in end-of-life decision-making for patients with limited English proficiency compared with patients without limited English proficiency: 1) clinician communication is modified and less frequent; 2) clinician ability to assess patient and family understanding is impaired; 3) relationship building is impaired; 4) patient and family understanding of decision-making concepts (e.g., palliative care) is impaired; 5) treatment limitations are often perceived to be unacceptable due to faith-based and cultural beliefs; and 6) patient and family decision-making styles are different. Facilitators of high-quality decision-making in patients with limited English proficiency included: 1) premeeting between clinician and interpreter; 2) interpretation that communicates empathy and caring; 3) bidirectional communication of cultural perspectives; 4) interpretation that improves messaging including appropriate word choice; and 5) clinician cultural humility.
CONCLUSIONS: End-of-life decision-making is significantly different for ICU patients with limited English proficiency. Participants identified several barriers and facilitators to high-quality end-of-life decision-making for ICU patients and families with limited English proficiency. Awareness of these factors can facilitate interventions to improve high-quality, compassionate, and culturally sensitive decision-making for patients and families with limited English proficiency.
Background: Prior work in adult oncology suggests minority patients are less involved in decision making than preferred. However, few studies have explored decision-making experiences of minority parents in pediatric oncology.
Objective: To determine whether parental decision-making preferences and experiences vary by race/ethnicity.
Design: Questionnaire-based cohort study.
Setting/Subjects: Three hundred sixty five parents of children with cancer and their oncologists at two academic centers.
Measurements: Parents reported on preferred and actual decision-making roles. Associations between race/ethnicity and decision-making outcomes determined by chi-squared test.
Results: Most parents preferred shared decision making (235/368, 64%), whereas 23% (84/368) preferred parent-led decision making and 13% (49/368) preferred oncologist-led decision making. Parental decision-making preferences did not differ by race/ethnicity (p = 0.38, chi-squared test). However, the actual role parents played in decision making differed by parental race/ethnicity, with 25% (71/290) of white parents reporting parent-led decision making, versus 37% (9/24) of black parents, 48% (13/27) of Hispanic parents, and 56% (15/27) of Asian/other parents (p = 0.005, chi-squared test). Oncologists accurately predicted parental preferences for decision making 49% of the time (n = 165/338), but accuracy also differed by race and ethnicity. Oncologists accurately predicted parental preferences for 53% of white parents (140/266), 23% of black parents (5/22), 37% of Hispanic parents (10/27), and 43% of Asian/other race parents (10/23) (p = 0.026, chi-squared test).
Conclusions: Minority parents held more active roles than white parents, and oncologists had more difficulty predicting decisional preferences for minority parents relative to white parents. These findings suggest that minority parents are at risk of inferior decision-making experiences.
Aim: Patients with cancer have varied preferences for involvement in decision-making. We sought older adults' preferred and perceived roles in decision-making about palliative chemotherapy; priorities; and information received and desired.
Methods: Patients =65y who had made a decision about palliative chemotherapy with an oncologist completed a written questionnaire. Preferred and perceived decision-making roles were assessed by the Control Preferences Scale. Wilcoxon rank-sum tests evaluated associations with preferred role. Factors important in decision-making were rated and ranked, and receipt of, and desire for information was described.
Results: Characteristics of the 179 respondents: median age 74y, male (64%), having chemotherapy (83%), vulnerable (Vulnerable Elders Survey-13 score = 3) (52%). Preferred decision-making roles (n = 173) were active in 39%, collaborative in 27%, and passive in 35%. Perceived decision-making roles (n = 172) were active in 42%, collaborative in 22%, and passive in 36% and matched the preferred role for 63% of patients. Associated with preference for an active role: being single/widowed (p = .004, OR = 1.49), having declined chemotherapy (p = .02, OR = 2.00). Ranked most important (n = 159) were “doing everything possible” (30%), “my doctor's recommendation” (26%), “my quality of life” (20%), and “living longer” (15%). A minority expected chemotherapy to cure their cancer (14%). Most had discussed expectations of cure (70%), side effects (88%) and benefits (82%) of chemotherapy. Fewer had received quantitative prognostic information (49%) than desired this information (67%).
Conclusion: Older adults exhibited a range of preferences for involvement in decision-making about palliative chemotherapy. Oncologists should seek patients' decision-making preferences, priorities, and information needs when discussing palliative chemotherapy.
Background: Early integration of palliative care can improve outcomes for people with cancer and non-cancer diagnoses. However, prediction of survival for individuals is challenging, in particular in patients with haematological malignancies who are known to have limited access to palliative care. The ‘Surprise’-Question can be used to facilitate referral to palliative care.
Aim: To explore experiences, views and perceptions of haemato-oncologists on the use of the ‘Surprise’-Question in the haemato-oncology outpatients clinics of a university hospital in Germany.
Design: A qualitative study using individual semi-structured interviews transcribed verbatim and analysed thematically based on the framework approach.
Setting/participants: The study took place at the haemato-oncology outpatient clinic and the bone marrow transplantation outpatient clinic of a university hospital. Nine haemato-oncologists participated in qualitative interviews.
Results: Thematic analysis identified 4 themes and 11 subthemes: (1) meaning and relevance of the ‘Surprise’-Question; (2) feasibility; (3) the concept of ‘surprise’ and (4) personal aspects of prognostication. A key function of the ‘Surprise’-Question was to stimulate intuition and promote patient-centred goals of care by initiating a process of pause reflection change of perspective. It was easy and quick to use, but required time and communication skills to act on. Participants’ training in palliative care enhanced their willingness to use the ‘Surprise’-Question.
Conclusion: Irrespective of its use in prognostication, the ‘Surprise’-Question is a valuable tool to facilitate consideration of patient-centred goals and promote holistic care in haemato-oncology. However, prognostic uncertainty, lack of time and communication skills are barriers for integration into daily practice. Further research should involve haematology patients to integrate their needs and preferences.
Although recognized as best practice, regular integration of shared decision-making (SDM) approaches between patients and oncologists remains an elusive goal. It is clear that usable, feasible, and practical tools are needed to drive increased SDM in oncology. To address this goal, we convened a multidisciplinary collaborative inclusive of experts across the health-care delivery ecosystem to identify key principles in designing and testing processes to promote SDM in routine oncology practice. In this commentary, we describe 3 best practices for addressing challenges associated with implementing SDM that emerged from a multidisciplinary collaborative: (1) engagement of diverse stakeholders who have interest in SDM, (2) development of the necessary roadmap and consideration of the infrastructure needed for engendring patient engagement in decision-making. We believe these 3 principles are critical to the success of creating SDM tools to be utilized both within and outside of clinical practice. We are optimistic that shared use across settings will support adoption of this tool and overcome barriers to implementing SDM within busy clinical workflows. Ultimately, we hope that this work will offer new perspectives on what is important to patients and provide an important impetus for leveraging patient preferences and values in decision-making.
Chaque polyhandicapé, quelle que soit la sévérité de son atteinte neurologique, a des interactions sociales et une histoire de vie qui lui sont propres. Son mode de communication parfois très limité rend le recueil de ses choix toujours difficiles et sujets à des interprétations parfois hasardeuses. C’est pourquoi, pour toutes décisions de soins impactant sur sa qualité de vie, il est indispensable de prendre l’avis d’un maximum de personnes pour s’approcher au mieux de ce que seraient les choix de ce patient peu ordinaire. Plus qu’une question d’équité, c’est une question d’éthique. Ainsi, toutes ces décisions doivent se faire en présence des experts médicaux mais aussi de ses proches, famille et professionnels qui partagent son quotidien, comme le montre l’exemple de la prise en charge d’un patient polyhandicapé atteint d’une insuffisance rénale terminale présenté dans cet article sous forme de vignette clinique. Ces regards croisés sont les meilleurs garants de décisions équilibrées. L’organisation de telles réunions demandent une vraie volonté de travail pluridisciplinaire qui ne passera que par la sensibilisation des experts au monde du handicap. C’est à la façon dont on traite les plus faibles qu’on juge d’une démocratie. Ainsi, la démocratie sanitaire devra passer par-là pour être aboutie.
Background: Requests for physician-assisted death (PAD) in patients with cognitive impairment are complex and require careful consideration. Of particular difficulty is determination of whether the request is voluntary and well considered.
Results: Euthanasia and physician-assisted suicide (PAS) are both legal in The Netherlands, Luxemburg, Colombia, and Canada. Euthanasia is legal in Belgium, while PAS is legal in Switzerland and Oregon, Washington, Montana, Vermont, and California (USA). Upon a PAD request, evaluation of the capacity to consent medical treatment is relevant for the decision-making process, while evaluation of testamentary capacity is appropriate before an advance euthanasia directive is written. Anosognosia assessment throughout the Alzheimer's disease continuum provides essential and relevant information regarding the voluntary and well-considered nature of the PAD request; meanwhile, early assessment of hypernosognosia or subjective cognitive decline assists in formulation of a clinical prognosis. Furthermore, the assessment of physical and psychological suffering should incorporate verbal and nonverbal cues as well as consideration of the psychosocial factors that might affect due care criteria.
Conclusion: The clinical approach to a PAD request should consider the legal framework and the decision-making capacity, assess memory deficit awareness and the perception of suffering, and evaluate mental competency when considered pertinent.
Objective: To survey university students on their views concerning the respect for autonomy of patients and the best interest of patients in relation to the withholding of resuscitation.
Methods: A cross-sectional survey among university students of medicine, nursing, philosophy, law and theology of the first and the final study years at the University of Ljubljana and the University of Zagreb was conducted during the academic year of 2016/2017. A questionnaire constructed by Janiver et al. presenting clinical case vignettes was used.
Results: The survey response rates for students in Ljubljana and Zagreb were 45.4% (512 students) and 37.9% (812 students), respectively. The results of our research show statistically significant differences in do-not resuscitate decisions in different cases between medical and non-medical students in both countries. Male and religious students in both countries have lower odds of respecting relatives' wishes for the withholding of resuscitation (odds ratio 0.49-0.54; 95% confidence interval). All students agreed that they would first resuscitate children if they had to prioritize among patients.
Conclusions: Our study clearly shows that gender, religious beliefs, and type of study are important factors associated with the decisions pertaining to the respect for autonomy, patient's best interest, and initiation or withholding of resuscitation.
OBJECTIVE: The purpose of this cross-sectional study was to identify the neuropsychological underpinnings of decision-making capacity in terminally ill patients with advanced cancer.
METHOD: Participants were 108 English-speaking adults. More than half (n = 58) of participants had a diagnosis of advanced cancer and were receiving inpatient palliative care; the rest were healthy adults. Participants completed a measure of decision-making capacity that assesses four legal standards of capacity (Choice, Understanding, Appreciation, and Reasoning), and several measures of neuropsychological functioning.
RESULTS: Patients with terminal cancer were significantly more impaired on measures of capacity and neuropsychological functioning. Surprisingly, in the terminally ill sample, there were no significant correlations between neuropsychological functioning and decision-making capacity.
CONCLUSION: The terminally ill sample exhibited high levels of neuropsychological impairment across multiple cognitive domains. However, few of the measures of neuropsychological functioning were significantly associated with performance on the decisional capacity subscales in the terminally ill sample. It is possible that end-of-life decisional capacity is governed by general, rather than domain-specific, cognitive abilities.
The present article reviews the state of public debate and legal provisions concerning end-of-life decision-making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of this law, which attests that the patient may withhold or withdraw from life-prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end-of-life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia.
Objectives: Decision-making processes concerning end-of-life decisions are not well understood for patients admitted into stroke units with severe stroke. To assess the influence of nurses on the medical perspectives and approaches that lead to withholding and/or withdrawing treatments related to end-of-life (EOL) decisions.
Patients and methods: This secondary analysis nested within the TELOS French national survey was based on a physicians' self-report questionnaire and on a I-Score which was linked to nurses' involvement. Physician's responses were evaluated to assess the potential influence of nurse's involvement on physician's choices during an end-of-life decision.
Results: Among the 120 questionnaires analyzed, end-of-life decisions were more often made during a round-table discussion (58% vs. 35%, p = 0.004) when physicians declare to involve nurses in the decision process. Neurologists involved with nurses in decision making were more likely to withhold a treatment (98% vs. 88%, p = 0.04), to withdraw artificial feeding and hydration (59% vs. 39%, p = 0.04), and more frequently prescribed analgesics and hypnotics at a potentially lethal dose (70% vs. 48%, p = 0.03).
Conclusion: The involvement of nurses during end-of-life decisions for patients with acute stroke in stroke units seemed to influence neurologists' intensivist practices and behaviors. Nurses supported the physicians' decisions related to forgoing life sustaining treatment for patients with acute stroke and may positively impact on the family's choice to participate in end-of-life decisions.
ABSTRACT: Objectives:To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.
DESIGN: Cross-sectional survey.
SETTING: 13 geographically dispersed Alzheimer's Disease Centers across the United States.
PARTICIPANTS: 431 racially diverse caregivers of persons with dementia.
MEASUREMENTS: Survey on "Care Planning for Individuals with Dementia."
RESULTS: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.
CONCLUSIONS: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
BACKGROUND: In emergency departments, for some patients, death is preceded by a decision of withholding or withdrawing life-sustaining treatments. This concerns mainly patients over 80, with many comorbidities. The decision-making process of these decisions in emergency departments has not been extensively studied, especially for noncommunicating patients.
AIM: The purpose of this study is to describe the decision-making process of withholding and withdrawing life-sustaining treatments in emergency departments for noncommunicating patients and the outcome of said patients.
DESIGN: We conducted a prospective multicenter study in three emergency departments of university hospitals from September 2015 to January 2017.
RESULTS: We included 109 patients in the study. Fifty-eight (53.2%) patients were coming from nursing homes and 52 (47.7%) patients had dementia. Decisions of withholding life-sustaining treatment concerned 93 patients (85.3%) and were more frequent when a surrogate decision maker was present 61 (65.6%) versus seven (43.8%) patients. The most relevant factors that lead to these decisions were previous functional limitation (71.6%) and age (69.7%). Decision was taken by two physicians for 80 patients (73.4%). The nursing staff and general practitioner were, respectively, involved in 31 (28.4%) and two (1.8%) patients. A majority of the patients had no advance directives (89.9%), and the relatives were implicated in the decision-making process for 96 patients (88.1%). Death in emergency departments occurred for 47 patients (43.1%), and after 21 days, 84 patients (77.1 %) died.
CONCLUSION: There is little anticipation in end-of-life decisions. Discussion with patients concerning their end-of-life wishes and the writing of advance directives, especially for patients with chronic diseases, must be encouraged early.
Medical anthropologists have long recognized that healing practices and rituals may seek to address family dynamics, alter roles within a community, and resolve social rifts, and that illness itself may be rooted in social and cultural concerns as much as physical and biological ones. Within this framework, decision-making for children at the end of life can be conceptualized as a type of healing ritual, directed not at physical healing of the individual body, but at the healing of a family, which will continue beyond the patient's death. Using this lens, the decision-making process becomes more important than the decisions themselves, as it is the process itself that initiates, or interferes with, family healing. This essay presents anthropological perspectives on the goals of healing and healing rituals, providing examples in which the recipient of healing was not the patient but the family or community. Drawing on this scholarship, the author reconceives decision-making at the end of life in pediatrics as a form of healing ritual, explores how this perspective might help clinicians to reframe situations that provoke moral and empathic distress, and analyzes the ethical implications of these arguments.
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory rights (UNCRC-Article 12), and a greater understanding of family-centred decision-making. However, the courts still largely maintain their traditional reluctance to find children Gillick competent to refuse medical treatment. In this article, I revisit Hannah's case through the narrative account provided by Hannah and her mother, to ascertain what lessons can be learnt. I use an Ethics of Care framework specially developed for children in mid-childhood, such as Hannah, to argue for more a creative and holistic approach to child decision-making in healthcare. I conclude that using traditional paradigms is untenable in the context of palliative care and at the end of life, and that the law should be able to accommodate greater, and even determinative, participation of children who are facing their own deaths.