Opinions about surrogate designation: a population survey in France

OBJECTIVE: Many patients go through periods when they are too ill to give consent or to participate in decisions. When this occurs, patient autonomy is best maintained when a surrogate designated by the patient and familiar with his or her values can speak for the patient. The objective of this study was to determine whether people who are not yet ill are ready to accept surrogate designation. Attitudes toward family participation in care were explored also. DESIGN: Population survey by telephone. Because refusal of life-sustaining treatment is a dramatic example of patient autonomy, the survey used questions about ICU admission. SETTING: General population in France. SUBJECTS: Representative random sample of 8000 residents of France aged 18 yrs or more. INTERVENTIONS: None. MAIN OUTCOME MEASURES: The survey investigated attitudes. RESULTS: Most respondents said they would like to designate a surrogate (7205 [90%]) and to have their family share in their care (6691 [84%] for bathing, 5629 [70%] for feeding, and 4139 [52%] for tracheal suctioning) and in decisions about their management (6120 [76%]). Among respondents with a spouse, 79% said they would designate the spouse to speak for them. The attitudes were not influenced by ethnicity, religion or education level. CONCLUSIONS: Most people living in France would want a surrogate to represent them should they be incompetent and admitted to an ICU. Primary care physicians should inform their patients about the benefits of discussing illness-related issues among friends and family.     

Changing preferences for information and participation in the last phase of life: a longitudinal study among newly diagnosed advanced lung cancer patients

Purpose

The objective is to explore changes over time in the information and participation preferences of newly diagnosed stage IIIb/IV non-small-cell lung cancer patients.

Methods

Patients were recruited by physicians in 13 hospitals and interviewed every 2?months until the fourth and every 4?months until the sixth interview.

Results

Sixty-seven patients were interviewed three times. Over a period of 4?months from diagnosis, half of patients changed their information preferences for palliative care and end-of-life decisions with a possible or certain life-shortening effect (ELDs, e.g., non-treatment decisions) in both directions, from not wanting to wanting the information, but also—and as much—from wanting to no longer wanting it. The latter were more likely to be in a better physical condition. Preferences for participation in medical decision making also changed: 50% to 78%, depending on the type of decision (general, treatment, transfer or ELD), changed their preference towards wanting more or less participation. Pain seemed to be a trigger for patients wanting more involvement, which contrasts with studies suggesting that patients who are more ill tend to give up more control.

Conclusions

Doctors should regularly ask their advanced lung cancer patients how much information and participation they want because preferences do change in unexpected ways.     

Patients' understanding of advance directives and cardiopulmonary resuscitation

OBJECTIVE: To describe understanding of end-of-life issues and compare characteristics of patients with and without advance directives. SETTING: A 325-bed community teaching hospital. MEASUREMENTS: Questionnaires were administered to all patients admitted to the medical-surgical wards. RESULTS: Of 755 patients admitted during the study period, 264 patients participated in the study, and 82 (31%) had living wills. Patients with living wills were more likely to be white, Protestant, and highly educated. Most (76%) created them with a lawyer or family member, whereas only 7% involved physicians. Although these patients were able to identify some components of cardiopulmonary resuscitation (CPR), few (19%) understood the prognosis after CPR. After explaining CPR, 37% of those with living wills did not want it, which was not stated in their directive or hospital record. If life-sustaining therapies were already started, 39% of these patients stated that they would not want CPR or mechanical ventilation if the likelihood of recovery was < or =10%. Patients without living wills either had not heard (18%) or did not know enough (51%) about them. After education, 5% did not want CPR, and 32% would terminate life-sustaining therapies if the likelihood of recovery was < or =10%. Seventy percent of these patients expressed interest in creating a living will. CONCLUSIONS: Patients with living wills understand poorly "life-sustaining therapies" and the implications of their advance directives. Most fail to involve physicians in creating directives. A significant number of those without living wills have end-of-life wishes that could be addressed by and appear open to the idea of creating advance directives.     

The effect of age on medical decisions made by patients with chronic illness

Patients are currently encouraged to appoint surrogates to make healthcare decisions for them in the event that they are not able to make those decisions for themselves. Many studies have suggested that in hypothetical situations, surrogates often make different decisions than the still-capacitated patients say they would make. Age difference between patient and appointed surrogate is one possible explanation because many surrogates are next-generation relatives. This study evaluated differences in end-of-life decision making between elderly and younger patients with chronic disease. Two age groups were interviewed: (1) geriatric patients aged 70 and older and; (2) acquired immunodeficiency syndrome (AIDS) patients aged 30-50. Subjects who demonstrated an understanding of cardiopulmonary resuscitation (CPR) and artificial nutrition and hydration (ANH) were asked to choose, on a five-point Likert scale, whether they would want these treatments for themselves in four hypothetical scenarios: (1) an older person in a coma after a car accident; (2) a younger person in a coma after a car accident; (3) an older person with Alzheimer's disease; (4) a younger person with AIDS dementia. One hundred seventy-six subjects were included: 84 geriatric patients and 92 AIDS patients. Differences in the two groups were significant only in the scenario of an older person in a coma after a car accident (p = 0.007), with the geriatric patients wanting more treatment. The lack of significant differences between healthcare decisions made by the two groups under the hypothetical scenarios utilized in this study may indicate that age differences will not prevent a next-generation healthcare agent from making substituted judgement that accurately reflects patient wishes.     

The representation of healthcare end users' perspectives by surrogates in healthcare decisions: a literature review

Background: The representation of end users’ perspectives in healthcare decisions requires involvement of their surrogates when the end users, i.e. certain patients, elderly people, children and people with disabilities, are unable to present their views. Aims: To review critical issues, and the advantages and disadvantages of involving surrogates in representing end users’ perspectives in healthcare decisions. Methods: A systematic review of literature published in peer‐reviewed journals from 1990 to 2005. Results: Findings show that surrogates are used widely in health care and that they are necessary to represent end users’ perspectives in healthcare decisions when the latter are unable to do so themselves. Critical issues in using surrogates include key ethical, social, cultural, legal and medico‐technological factors; ascertaining the best interest of end users; potential conflict of interest; possible biased decisions and the burden on surrogates. The key advantage of surrogate involvement in healthcare decisions is their ability to represent end users’ needs, values and wishes. The main disadvantages include potential discrepancies between the decisions and conclusions of surrogates and end users; the failure of surrogates to predict end users’ preferences accurately and the lack of certainty that useful information will be obtained through the surrogacy process. Conclusion: This systematic review has revealed that the involvement of surrogates is an additional vital way to represent end users’ perspectives in healthcare decisions where for a range of reasons their opinions are unable to be effectively ascertained. However, because of the heterogeneity of surrogates and end users, the selection of appropriate surrogates and deploying surrogate decisions require particularly careful consideration of their value in individual cases; thus, subsequent decision‐making must be reviewed on a case‐to‐case basis to seek to ensure that the best interests, needs and wishes of the end user are fully and accurately represented.     

Deferred decision making: patients' reliance on family and physicians for CPR decisions in critical care

The aim of this study was to investigate factors associated with seriously ill patients' preferences for their family and physicians making resuscitation decisions on their behalf. Using SUPPORT II data, the study revealed that, among 362 seriously ill patients who were experiencing pain, 277 (77%) answered that they would want their family and physicians to make resuscitation decisions for them instead of their own wishes being followed if they were to lose decision-making capacity. Even after controlling for other variables, patients who preferred the option of undergoing cardiopulmonary resuscitation (CPR) in the future were twice as likely, and those who had had ventilator treatment were four-fifths less likely, to rely on their family and physicians than those who did not want CPR (odds ratio (OR) = 2.28; 95% confidence interval (CI) 1.18-4.38) or those who had not received ventilator treatment (OR = 0.23; 95% CI 0.06-0.90). Psychological variables (anxiety, quality of life, and depression), symptomatic variables (severity of pain and activities of daily living) and the existence of surrogates were not significantly associated with patients' preferences for having their family and physicians make resuscitation decisions for them. Age was not a significant factor for predicting the decision-making role after controlling for other variables.     

Responding to surrogate requests that seem inconsistent with a patient's living will

Clinicians may feel conflicted when a patient’s legal decision maker is making decisions that seem inconsistent with a patient’s living will. We provide evidence-based information to help clinicians consider whether a surrogate’s inconsistent decisions are ethically appropriate. Surrogates are not flawless translators of their loved one’s preferences; they are influenced by their own hopes and the current clinical context. Patients may be aware of this, are often concerned about burdening their loved ones, and often grant their surrogates leeway in interpreting their wishes. When appropriate, clinicians should respect surrogates’ interpretations of patient values and take steps to decrease surrogate stress during the decision-making process. Finally, if clinicians are cognizant of their own values and preferences, they may recognize how these may affect their responses to certain clinical cases.     

Nephrologists should voluntarily divulge survival data to potential dialysis patients: a questionnaire study.

BACKGROUND: For many dialysis patients, survival is no different than with certain cancers. Yet, it appears that most nephrologists do not give detailed information about survival prior to obtaining informed consent for chronic dialysis. There are no published data on whether patients wish to be so informed. OBJECTIVE: To assess whether patients would want voluntary disclosure by their physician of their survival should they need dialysis, and if so, why? METHOD: A questionnaire was completed by 100 general nephrology patients during their first visit to a nephrologist. RESULTS: The vast majority of patients (97%) would want to be given life-expectancy information, and for the physician to do so without having to be prompted. Furthermore, the majority of patients would want as much information as possible, both good and bad. CONCLUSIONS: Virtually all patients want, and therefore should receive from their physician, prognostic information about dialysis to facilitate informed decision-making. This is in accordance with current practice guidelines.     

Documenting patients' end-of-life decisions

The anguish families experience when they are asked to make health care decisions for incompetent members has stimulated the search for an adequate procedure to document patients' end-of-life decisions. This study explores a method of recording competent patients' wishes via a "value history," a questionnaire that can guide families and the health care team during an incompetent person's terminal illness. Questions addressed were these: Can a primary care physician gather information from competent patients about their care before they become incompetent? Can a nurse practitioner gather the information as efficiently as a physician? Do patients want this information recorded in their charts? and, Is the primary care office as well as the patient's home an appropriate location to obtain a value history? Four hundred patients were invited to record their wishes for future care. Patients expressed that they wanted to be told the truth about their health and their health care, and they wanted to participate in decision-making, even while dying. The majority did not want to be maintained indefinitely on life-support systems. Patient responses were similar regardless of whether the NP or physician conducted the interview. A primary care office or patient's home are both suitable for filling out the value history. Because of the enthusiastic patient responses, the authors recommend that value histories become a routine part of a patient's medical record.     

Preferences for Resuscitation and Intubation Among Patients With Do-Not-Resuscitate/Do-Not-Intubate Orders

ObjectiveTo determine the accuracy of do-not-resuscitate/do-not-intubate (DNR/DNI) orders in representing patient preferences regarding cardiopulmonary resuscitation (CPR) and intubation.Patients and MethodsWe conducted a prospective survey study of patients with documented DNR/DNI code status at an urban academic tertiary care center that serves approximately 250,000 patients per year. From October 1, 2010, to October 1, 2011, research staff enrolled a convenience sample of patients from the inpatient medical service, providing them with a series of emergency scenarios for which they related their treatment preference. We used the Kendall τ rank correlation coefficient to examine correlation between degree of illness reversibility and willingness to be resuscitated. Using bivariate statistical analysis and multivariate logistic regression analysis, we examined predictors of discrepancies between code status and patient preferences. Our main outcome measure was the percentage of patients with DNR/DNI orders wanting CPR and/or intubation in each scenario. We hypothesized that patients with DNR/DNI orders would frequently want CPR and/or intubation.ResultsWe enrolled 100 patients (mean ± SD age, 78±13.7 years). A total of 58% (95% CI, 48%-67%) wanted intubation for angioedema, 28% (95% CI, 20%-3.07%) wanted intubation for severe pneumonia, and 20% (95% CI, 13%-29%) wanted a trial resuscitation for cardiac arrest. The desire for intubation decreased as potential reversibility of the acute disease process decreased (Kendall τ correlation coefficient, 0.45; P<.0002).ConclusionMost patients with DNR/DNI orders want CPR and/or intubation in hypothetical clinical scenarios, directly conflicting with their documented DNR/DNI status. Further research is needed to better understand the discrepancy and limitations of DNR/DNI orders.     

Importance of information following myocardial infarction: a study of the self-perceived information needs of patients and their spouse/partner compared with the perceptions of nursing staff

A non-experimental research design using questionnaires, was undertaken to find out what information out of that commonly given following myocardial infarction (MI), patients and their spouse/partners rate as being most and least important. These results were then compared with the results obtained from nurse subjects, who were given the same instrument to complete. Eighteen subjects were recruited for each of the three subject groups. Results indicated that some congruency existed between the three groups in terms of what they perceived as the most and least important categories of information. Yet, the scores for some informational categories included on the instrument, were significantly different between the nursing and two other groups ( P <0·01). However, in relation to the patient and spouse/partner groups, only a weak difference ( P <0·10) was found for the category 'dietary information'. These findings and others are discussed, and recommendations are made for improving the information giving process post-MI.     

Why women want prenatal ultrasound in normal pregnancy.

OBJECTIVES: To investigate women's reasons for requesting prenatal ultrasound in the absence of clinical indications. METHODS: A postal questionnaire was completed by 370 pregnant women with no apparent obstetric risk factors, who had expressed a desire to have ultrasound scanning in their current pregnancy. The women were asked to indicate, from a list of 12 items, their three most important reasons for wanting scanning. Ninety per cent of the women were in the first trimester of pregnancy, and 10% in the second trimester. RESULTS: The items most frequently identified as important reasons for ultrasound were to check for fetal abnormalities (60% of women), to see that all was normal (55%) and for own reassurance (44%). Lower income was related to wanting to see the baby (P = 0.028) and wanting an ultrasound picture (P = 0.017); higher income was related to checking that all was normal (P = 0.003) and for own reassurance (P = 0.015). Women in their first pregnancy were more likely to want themselves and the father to see the baby (P = 0.001); women who had given birth previously were more likely to want reassurance (P = 0.002), as were women with a previous miscarriage or induced abortion. Women who believed that the presence of fetal trisomy justifies abortion or who would vote for free abortion were more likely to want to know about abnormalities (P < 0.001 and P < 0.004, respectively). Women in the second trimester were more likely to want to check for abnormalities (P = 0.041) and appropriate fetal growth (P = 0.047) than those in the first trimester. CONCLUSIONS: It would appear that women in normal pregnancy have specific reasons for wanting prenatal ultrasound that are influenced by sociodemographic, obstetric and attitudinal factors.     

At a threshold: making decisions when you don't have all the answers

Many people who sustain a brain injury also lose decisional capacity. They need someone who will be a partner with clinicians in making decisions on their behalf. This article reviews ethical aspects of decision making; the legal foundation in the United States for surrogate decision making; the experience of surrogate decision making on behalf of people who have a brain injury, including similarities and differences between such decision making for the dying and for those who have a brain injury; and ways to approach intractable disagreements between surrogate or family and clinicians. It provides guidelines for clinicians and surrogates and suggests topics for research. Two people who have suffered a brain injury and the spouse of one are coauthors.     

Decision-making capacity and surrogate designation in French ICU patients

OBJECTIVE: To evaluate the capacity and willingness of French-speaking patients to designate a surrogate within 24 h of their ICU admission. French laws fail to indicate what should be done when an otherwise legally competent patient transiently loses his decision-making capacity. DESIGN: Surrogate designation was prospectively evaluated during two study periods. Only conscious patients were assessed using the Glasgow Come Score in the first study period, and all admitted patients were assessed in the second period. Decision-making capacity was evaluated using the Mini Mental Status Examination (MMSE) in the second study period. SETTING: Twenty six-bed intensive care unit (ICU) in a French teaching hospital. PATIENTS AND PARTICIPANTS: Over a 8-month period 495 patients were included in the study, 415 in the first study period and 80 in the second. MEASUREMENTS AND RESULTS: Of the 495 patients 185 (37.3%) were interviewed, and 62.7% designated a surrogate. The surrogate was the spouse in 50% of cases and a child in 28.4%. Only 25.8% were considered to have decision-making capacity; 78.1% of competent patients and 28% of the patients without decision-making capacity agreed to designate a surrogate. CONCLUSIONS: Surrogate designation by a patient should be evaluated in the light of the decision-making capacity of the patient. The traditional French paternalism still practiced by many French physicians appears out of tune with the wishes of their patients. We suggest that there is a need for developing a simple and effective tool for assessing decision-making capacity in ICU patients.     

How do patients and spouses deal with the serious facts of malignant glioma?

Malignant glioma is a severe disease with little chance for recovery. Due to its effect on cerebral function, it is also a disease with an obvious social impact on family life. Brain tumours, therefore, produce much of the anguish associated with cancer diseases. There is a lack of prospective studies concerning how patients and spouses together deal with the serious facts of cancer. In this study, a series of 25 consecutive patients with malignant gliomas and their spouses was followed during the whole course of the disease process by repeated thematic interviews. The spouses were also subjected to a summarizing interview after the patient's death. The interviews were analyzed qualitatively in order to detect the various ways the patient-spouse couples dealt with this severe situation and how they discussed it with each other. Four different social processes were detected: 1) the patient does not seem to be aware, the spouse is aware but pretends not to be; 2) both are aware, but the patient does not want to share; they drift apart; 3) both are aware, they do/do not talk openly about the gravity of the situation; nevertheless, there is a joint platform; and 4) neither patient nor spouse seems to be aware; they carry on living as before. The patients, compared to the spouses, seemed content with received information. A few of the couples openly discussed death and dying. More common, and apparently sufficient, was a mutual acknowledgement of the serious facts, without using the words 'death' and 'dying'. In a sense, the present findings challenge the awareness categories suggested by Glaser and Strauss.     

Knowledge and Wishes of Patients as Regards Vitamin K Antagonists: a Cross-sectional Survey in Western Brittany, France

Objective. We aimed to investigate patients' educational wishes and patients' perception of their knowledge of anticoagulants. Material and methods. One thousand patients were randomly sampled from a list of patients living within the Brest district (France) affiliated to the National Health Insurance System and who had been reimbursed after the delivery of vitamin K antagonists in May 2007. A 56-item questionnaire has been mailed along with an information letter and a reply-paid envelope enclosed. Results. Some 647 questionnaires were received; 82% of responders declared having been informed. Information was globally perceived as complete although alleged as being insufficient as regards bleeding management. Management of oral anticoagulants appears correct; however, only 28% of responders stated having a surveillance booklet; 63% of responders would like information and elicited oral information from their general practitioner. Conclusion. Our study highlighted the importance of general practitioners in the French health system when thinking about implementing an educational program on anticoagulation.     

Perspectives regarding what constitutes a “good death” among Thai nurses: A cross‐sectional study

Palliative care is a crucial component in improving peoples' end‐of‐life period. It is important to understand the wishes of people at the end of life and the perceptions of their healthcare providers regarding these wishes. As nurses play a key role in patient care, in this study we set out to determine nurses' perceptions regarding what constitutes a “good death”, comparing what they thought their older patients would prefer to their own preferences for their own end‐of‐life care. Questionnaires asking about various options of end‐of‐life care were distributed to nurses, and they were asked how they thought older people would respond to each of the questions and what their own preferences would be if they were terminally ill. In total, 656 participants were enrolled and they rated relief from suffering as the most important component, both for themselves and for those in their care. More than 80% of nurses agreed with all of the statements on the questionnaire. However, some of the nurses' preferences for their own end of life differed from those they expected their patients to value.     

Experience of being the spouse/cohabitant of a person with bipolar affective disorder: a cumulative process over time

The aim of the study was to identify and describe spouses'/cohabitants' experiences of living with a partner with bipolar affective disorder over time. Qualitative research interviews were conducted with eight spouses/cohabitants. Transcribed interviews were analysed structurally based on Ricoeur's phenomenological hermeneutics as described by Lindseth and Norberg. The participants' shared lives ranged from 6 to 51 years, and the study found three major aspects that characterized their experience along this time-dimension; experience formed part of a cumulative process containing up to 14 experiences. Each experience created a preunderstanding that affected how subsequent experiences were perceived, and mastered. These three major aspects had a reciprocal influence on the following 14 experiences over time: Fear and the incomprehensible. Accusations. Self-doubt and doubt about own powers of judgement. Care and information vs. being overlooked or turned away by health personnel. Stigmatization and loss of social network. Uncertainty, powerlessness and hope. Loneliness. Anger and despair. The persistent threat. Own health problems. Grief over loss. Dawning acceptance. Reconciliation. New hope. A theoretical understanding using gestalt therapy theory suggests that burdensome experience can be seen as an inner imbalance in the spouse/cohabitant when she/he cannot find meaning in their experiences. When only parts of the whole are perceived, an incomplete gestalt is formed in the person's lived-experience that counteracts the equilibrium of the organism. Insight and meaning can protect them against burdensome experiences and nurses can empower them through care, health-promoting education and guidance. Nursing research should develop methods of education and guidance sensitive enough to help each spouse/cohabitant, regardless of where they are in their cumulative process.     

Witnessing invasive paediatric procedures, including resuscitation, in the emergency department: a parental perspective

Objective: To determine whether parents prefer to be present during invasive procedures performed on their children in the ED. Methods: A prospective study using a written survey was carried out in the ED of a secondary level regional hospital in south‐east Queensland. The survey conducted between August 2003 and November 2003 consisted of parental demographics, seven theoretical paediatric procedural scenarios with increasing level of procedural invasiveness (including resuscitation) and reasons for the decisions of parents to either stay with the child or leave the room. Parents of children with Australasian Triage Scale (ATS) triage category 3, 4 and 5 were surveyed. Results: Of 573 surveys collected, 553 (96.5%) were completed correctly. The number of parents expressing a desire to be present during a procedure performed on their child was 519 (93.9%) for phlebotomy or i.v. cannulation of an extremity, 485 (87.7%) for nasogastric tube insertion, 461 (83.4%) for lumbar puncture, 464 (83.9%) for urinary catheter insertion, 430 (77.8%) for suprapubic bladder aspiration, 519 (93.4%) during procedural sedation and 470 (85%) during a resuscitation where the possibility existed that their child may die. The most common reason for wanting to be present was to provide comfort to their child (542/98%). The most common reason for not wanting to be present was a parental concern of getting in the way (181/33%). Conclusion: Most parents surveyed would want to be present when invasive procedures are performed on their children in the ED. With increasing invasiveness, parental desire to be present decreased. However, the overwhelming majority of parents would want to be in attendance during procedural sedation or resuscitation.