Choosing between life and death: patient and family perceptions of the decision not to resuscitate the terminally ill cancer patient

In keeping with the pre-eminent status accorded autonomy within Australia, Europe, and the United States, medical practice requires that patients authorize do-not-resuscitate (DNR) orders, intended to countermand the default practice in hospitals of instituting cardiopulmonary-resuscitation (CPR) on all patients experiencing cardio-pulmonary arrest. As patients typically do not make these decisions proactively, however, family members are often asked to act as surrogate decision-makers and decide on the patient's behalf. Although the appropriateness of patients or their families having to decide about the provision of CPR has been challenged, there has been little examination of how patients and their families talk about and negotiate such decisions, particularly in the context of the patient's imminent death. In this article, part of a larger study analysing interviews with 28 patients (13 female) with cancer within weeks of their death, and 20 others (predominantly family) attending, we argue that a common assumption underpinning participants' talk about the DNR decision (i.e. forgoing CPR) is that it requires a choice between life and death. Using illustrative examples, we demonstrate that in making decisions about CPR, patients and their families are implicitly required to make moral judgements about the value of the patient's life, including their relationships with significant others. We identify some implications of these empirical observations for the development of ethically appropriate policies and practices regarding patient autonomy and surrogacy at the end of life.     

Medical decision making and medical education: challenges and opportunities

The Flexner Report highlighted the importance of teaching medical students to reason about uncertainty. The science of medical decision making seeks to explain how medical judgments and decisions ought ideally to be made, how they are actually made in practice, and how they can be improved, given the constraints of medical practice. The field considers both clinical decisions by or for individual patients and societal decisions designed to benefit the public. Despite the relevance of decision making to medical practice, it currently receives little formal attention in the U.S. medical school curriculum. This article suggests three roles for medical decision making in medical education. First, basic decision science would be a valuable prerequisite to medical training. Second, several decision-related competencies would be important outcomes of medical education; these include the physician's own decision skills, the ability to guide patients in shared decisions, and knowledge of health policy decisions at the societal level. Finally, decision making could serve as a unifying principle in the design of the medical curriculum, integrating other curricular content around the need to create physicians who are competent and caring decision makers.     

Predicting the Risk of Suicide by Analyzing the Text of Clinical Notes

We developed linguistics-driven prediction models to estimate the risk of suicide. These models were generated from unstructured clinical notes taken from a national sample of U.S. Veterans Administration (VA) medical records. We created three matched cohorts: veterans who committed suicide, veterans who used mental health services and did not commit suicide, and veterans who did not use mental health services and did not commit suicide during the observation period (n = 70 in each group). From the clinical notes, we generated datasets of single keywords and multi-word phrases, and constructed prediction models using a machine-learning algorithm based on a genetic programming framework. The resulting inference accuracy was consistently 65% or more. Our data therefore suggests that computerized text analytics can be applied to unstructured medical records to estimate the risk of suicide. The resulting system could allow clinicians to potentially screen seemingly healthy patients at the primary care level, and to continuously evaluate the suicide risk among psychiatric patients.     

The use of sedative-hypnotic drugs in a university teaching hospital.

We reviewed the charts of 476 patients admitted to a university teaching hospital to determine whether sedative-hypnotic drugs (SHDs) were being used excessively and to examine the use of SHDs as hypnotics. The frequency of medical and surgical indications for barbiturates and benzodiazepines or other minor tranquillizers as well as the use of such drugs were compared among different groups of patients and specialty wards. Of the patients 29% had a regular order and 40% had a PRN order; only 77% of the PRN orders were administered. A total of 215 patients (45%) received an SHD during their hospital stay, and 160 (34%) received the drug as a hypnotic. Medical indications accounted for 49% of the regular orders but only 2% of the PRN orders; moreover, 89% of all the PRN orders were for insomnia. On average, patients receiving SHDs as hypnotics were older (p less than 0.05) and stayed longer in hospital (p less than 0.01) than those who did not; however, no patient on the geriatric or pediatric ward received an SHD as a hypnotic during the hospital stay. The differences in use between patient groups may have been influenced by orientation of ward staff. Physicians should review their rationale for prescribing hypnotics and avoid routine orders on admission.     

The need for validation of large administrative databases: Veterans Health Administration ICD-9CM coding of exudative age-related macular degeneration and ranibizumab usage

We performed a validation study by chart review of data for exudative age-related macular degeneration (eAMD) and, because of the Veterans Administration (VA) therapy policy, ranibizumab usage in the largest electronic medical record system in the USA. We reviewed 5,854 distinct patients who visited an ophthalmology clinic within VA Connecticut from January 2006-December 2008. We randomly selected 98 of 138 distinct eAMD patients and 265 of 5,588 non-eAMD patients who did not receive ranibizumab. International Classification of Diseases, Ninth Revision, Clinical Modification coding of eAMD had an excellent positive predictive value of 97.8% (95% confidence interval (CI), 93.5-99.4%). The national Decision Support System (DSS) had an excellent positive predictive value of 100% (95% CI, 79.9-100%) for ranibizumab. However, the negative predictive value of the DSS dispensed ranibizumab decreased to 67.5 (95% CI, 62.1-72.4) because of a change in the way local values were stored that led to errors. Therefore, validation of clinical information over time in large databases is necessary.     

Do-not-resuscitate order. What happens after hospital discharge?

We observed 55 inpatients with "do-not-resuscitate" (DNR) orders to determine what happened to their DNR status after hospital discharge. All were admitted to the medical service of a Department of Veterans Affairs hospital. Of the 55 patients, 16 died in the hospital, 10 were discharged to inpatient hospice units, and 1 was transferred to an acute care hospital. An additional 19 patients were discharged to nursing homes. The other 9 patients (16% of the total) survived their hospital stays; 6 successful contacts were made with patients'' spouses. In 1 case the spouse thought a DNR order was no longer desirable. In the other 5 cases the spouse said the DNR status was "probably" or "definitely" still warranted, but only 1 spouse had a written DNR order at home. We contacted 9 of the 14 house officers who had cared for the patients in hospital. Only 2 had ever written a DNR order after hospital discharge. Two house officers said they routinely discussed with family members a patient''s expected dying process at home. Unwanted resuscitation is as undesirable at home as in the hospital. Physicians should discuss future resuscitation procedures with patients who have DNR orders at the time of hospital discharge. Physicians, paramedic service directors, and policymakers also should develop protocols and standardized home DNR orders so that paramedics can honor the wishes of patients in the prehospital setting.     

Nationwide study of decisions concerning the end of life in general practice in The Netherlands.

OBJECTIVE--To gain insight into decisions made in general practice about the end of life. DESIGN--Study I: interviews with 405 physicians. Study II: analysis of death certificates with data obtained on 5197 cases in which decisions about the end of life may have been made. Study III: prospective study with doctors from study I: questionnaires used to collect information about 2257 deaths. The information was representative for all deaths in the Netherlands. RESULTS--Over two fifths of all patients in the Netherlands die at home. General practitioners took fewer decisions about the end of life than hospital doctors and doctors in nursing homes (34%, 40%, and 56% of all dying patients, respectively). Specifically, decisions to withhold or withdraw treatment to prolong life were taken less often. Euthanasia or assisted suicide, however, was performed in 3.2% of all deaths in general practice compared with 1.4% in hospital practice. In over half of the cases concerning pain relief or non-treatment general practitioners did not discuss the decision with the patient, mostly because of incapacity of the patient, but in 20% of cases for "paternalistic" reasons. Older general practitioners discussed such decisions less often with their patients. Colleagues were consulted more often if the general practitioner worked in group practice. CONCLUSION--Differences in work situation between general practitioners and hospital doctors and differences between the group of general practitioners contribute to differences in the number and type of decisions about the end of life as well as in the decision making process.     

Colonization of hospitalized patients with yeast-like organisms

The pharyngeal, fecal and skin carrier rates of yeast-like organisms was determined in 126 patients on the day of admission to a larger Veterans Administration Hospital. None of these patients had been hospitalized or received anti-microbial agents during the previous year Candida and Torulopsis species were most common. A small percentage of patients were carriers of various species belonging to the genera Trichosporon, Rhodotorula, Saccharomyces, Leucosporidium and Endomycopsis. Fifty of the original 126 patients remained hospitalized for a sufficient duration to permit repeat cultures on days 7 and 14. Twenty-five of these patients served as controls and did not receive antibiotics; the other 25 received at least a 4-day course of antibiotic therapy for an underlying infection. Although there was no significant difference in the carrier rates in these 2 groups, organisms other than Candida continued to be isolated from the 50 patients who remained hospitalized for 2 weeks.     

End of life care in HIV-infected children who died in hospital

The aim of this study was to evaluate terminal care among hospitalized children who died of HIV/AIDS. The design was a retrospective chart review of the terminal hospitalization. The setting was a public, secondary and tertiary children's hospital in Cape Town, South Africa (SA). The patients included a consecutive series of in-patient deaths from HIV-related causes. The main outcome measures included: documentation of do not resuscitate (DNR) orders and comfort care plans, intensity of diagnostic and therapeutic interventions in last 24 hours of life, and presence of pain and distress in last 48 hours of life. The results are based on the review of 165 out of 167 in-patient deaths. Of those, 79% of patients died in general wards. Median age and length of stay were 4 months and 6 days respectively. A total of 84% of patients had a DNR order. DNR orders appeared simultaneously in only 41% of medical and nursing notes. Only 44% of patients had a comfort care plan. Pain and distress in the last 48 hours was documented in 55% of patients who died in the general wards. Respiratory symptomatology and painful skin conditions accounted for most discomfort. Half (36/72) the patients with pain and distress, including 16 with a comfort care plan, received no analgesia. Conclusions drawn found that, despite clinical uncertainty, doctors made tough end of life decisions that included DNR orders and comfort care plans. The lower rate of comfort care plans suggests doctors had difficulty making the transition from curative to palliative care. Many comfort care plans were incoherent and included interventions unlikely to promote patients' comfort. In light of the HIV/AIDS pandemic in SA, reforms are needed to integrate palliative care within mainstream hospital medicine. However, without adequate human resources including trained interpreters, doctors and nurses will struggle to deliver optimal terminal care in acute hospitals.     

ROSC rates and live discharge rates after cardiopulmonary resuscitation by different CPR teams - a retrospective cohort study

Background

Previous studies have reported that the quality of cardiopulmonary resuscitation (CPR) is closely associated with patient outcomes. The aim of this study was to compare patient CPR outcomes across resident, emergency medicine, and rapid response teams.

Methods

The records of patients who underwent CPR at the Seoul National University Bundang Hospital from January 1, 2013 to December 31, 2016 were analyzed retrospectively. Return of spontaneous circulation, 10- and 30-day survival, and live discharge after return of spontaneous circulation were compared across patients treated by the three CPR teams.

Results

Of the 1145 CPR cases, 444 (39%) were conducted by the resident team, 431 (38%) by the rapid response team, and 270 (23%) by the emergency medicine team. The adjusted odds ratios for the return of spontaneous circulation and subsequent 10-day survival among patients who received CPR from the resident team compared to the rapid response team were 0.59 (P?=?0.001) and 0.71 (P?=?0.037), respectively. There were no significant differences in the 30-day survival and rate of live discharge between patients who received CPR from the rapid response and resident teams; likewise, no significant differences were observed between patients who received CPR from the emergency medicine and rapid response teams.

Conclusions

Patients receiving CPR from the rapid response team may have higher 10-day survival and return of spontaneous circulation rates than those who receive CPR from the resident team. However, our results are limited by the differences in approach, time of CPR, and room settings between teams.

     

ARE PATIENTS’ DECISIONS TO REFUSE TREATMENT BINDING ON HEALTH CARE PROFESSIONALS?

When patients refuse to receive medical treatment, the consequences of honouring their decisions can be tragic. This is no less true of patients who autonomously decide to refuse treatment. I distinguish three possible implications of these autonomous decisions. According to the Permissibility Claim, such a decision implies that it is permissible for the patient who has made the autonomous decision to forego medical treatment. According to the Anti-Paternalism Claim, it follows that health-care professionals are not morally permitted to treat that patient. According to the Binding Claim it follows that these decisions are binding on health-care professionals. My focus is the last claim. After arguing that it is importantly different from each of the first two claims, I give two arguments to show that it is false. One argument against the Binding Claim draws a comparison with cases in which patients autonomously choose perilous positive treatments. The other argument appeals to considered judgments about cases in which disincentives are used to deter patients from refusing sound treatments.     

Decision-making for long-term tube-feeding in cognitively impaired elderly people

BACKGROUND: The decision to start long-term tube-feeding in elderly people is complex. The process by which such decisions are made is not well understood. The authors examined the factors involved in the decision to start long-term tube-feeding in cognitively impaired older people from the perspective of the substitute decision-maker. METHODS: A telephone survey was administered to the substitute decision-makers of tube-fed patients over 65 years old in chronic care facilities in Ottawa. Subjects were recruited from September 1997 to March 1998. Patients were incapable of making their own decisions about tube-feeding. Data were collected on sociodemographic factors, patients'' health status, advance directives, communication between the substitute decision-maker and the health care team, and the decision-maker''s perceived goals of tube-feeding and satisfaction with the decision regarding tube-feeding. RESULTS: Among the 57 cases in which the patient was eligible for inclusion in the study, 46 substitute decision-makers agreed to participate. Most of the patients had not given advance directives, and only 26 substitute decision-makers (56.5%) were confident that the patient would want to be tube-fed. A physician spoke with the substitute decision-maker about tube-feeding for 15 minutes or less in 17 cases (37.0%) and not at all in 13 cases (28.3%). Most of the substitute decision-makers (39 [84.8%]) felt that they understood the benefits of tube-feeding, but less than half (21 [45.7%]) felt that they understood the risks. The prevention of aspiration and the prolongation of life were the medical benefits most often cited as reasons for tube-feeding. Just over half (24 [52.2%]) of the substitute decision-makers felt that they had received adequate support from the health care team in making the decision. Substitute decision-makers of patients less than 75 years old were more likely than those of older patients to feel supported (odds ratio [OR] 4.2, 95% confidence interval [CI] 1.0-17.9). Compared with the physician''s making the decision independently, substitute decision-makers felt more supported if they primarily made the decision (OR 16.5, 95% CI 2.7-101.4) or if they made the decision together with the physician (OR 5.3, 95% CI 1.0-27.9). Most (20 [43.5%]) of the substitute decision-makers did not feel that tube-feeding improved the patient''s quality of life, and less than half (21 [45.7%]) indicated that they would choose the intervention for themselves. INTERPRETATION: The substitute decision-making process for tube-feeding in cognitively impaired elderly people is limited by a need for advance directives, lack of confidence in substituted judgement and poor communication of information to the substitute decision-maker by the health care team.     

Trust and Distrust in CPR Decisions

Trust is essential in human relationships including those within healthcare. Recent studies have raised concerns about patients’ declining levels of trust. This article will explore the role of trust in decision-making about cardiopulmonary resuscitation (CPR). In this research thirty-three senior doctors, junior doctors and division 1 nurses were interviewed about how decisions are made about providing CPR. Analysis of these interviews identified lack of trust as one cause for poor understanding of treatment decisions and lack of acceptance of medical judgement. Two key implications emerged from the analysis. First, before embarking on a discussion about CPR it is essential to establish trust between the doctor and the patient/family. Secondly, it is essential that the CPR discussion itself does not undermine trust and cause harm to the patient.     

SUICIDE PROBLEMS IN MEDICAL PRACTICE

Increasing awareness by physicians in general medical practice of the possibility of suicide in nonpsychiatric patients is indispensable for the evaluation of suicide risk and for a practical approach to the problem of prevention.An analysis was made of the records of 11 cases of suicide by medical and surgical patients who were in a general nonpsychiatric Veterans Administration hospital for evaluation and treatment of physical disease.It was noted that the general hospital staff had a low index of suspicion of the possibility of suicide in general hospital patients.It appeared from this study that there is a definite suicide risk in older persons hospitalized for physical illness who develop psychotic reactions during the course of their illness and hospitalization. The signs and symptoms of toxic and organic psychosis in these older patients were not recognized and their significance relative to suicide risk was not appreciated. Although psychiatric signs of severe emotional disturbance appeared clinically obvious at least 24 hours before suicide in ten of the eleven patients, no suicide risk was considered present, nor were adequate precautions taken by the hospital staff. This was owing to the lack of psychiatric orientation among the nonpsychiatric physicians.     

Physician-assisted suicide and euthanasia: Disproportionate prevalence of women among Kevorkian's patients

End-of-life decisions are among the most difficult to make or study. When we examined these decisions made under the auspices and protection of stringent state laws, we found no gender bias among patients who chose to end their lives in the face of documented debilitating and terminal diseases. However, in the case of euthanasia as practiced by Jack Kevorkian, we found significant statistical bias against women. Moreover, other data have questioned whether all of Kevorkian's patients did, in fact, have debilitating and terminal illnesses. In this article, we explore why a gender disparity exists in end-of-life decision making. We conclude that if physician-assisted suicide and euthanasia are to be integrated into any end-of-life medical care policy, stringent legal and medical safeguards will be required. Institution of these safeguards should prevent selection bias in a vulnerable population hastening death for reasons other than medically justifiable conditions or issues of individual autonomy, and should ensure that end-of-life decisions are truly reflective of competent personal choice, free from economic considerations or societal pressure.     

Walk-in clinics: implications for family practice.

To understand better the reasons for the growth in popularity of walk-in clinics in Canada we surveyed 321 patients with a regular physician in Toronto who attended a walk-in clinic in the same city over a 16-day period in February 1988. They were asked their reason for attending the clinic, their perception of the urgency of their problem, their choices as alternatives to walk-in clinics and their satisfaction and concerns with the type of care received at the clinic. The three most common reasons for attending the clinic were convenient location (in 33% of the cases), inability to see their regular physician soon enough (in 16%) and no appointment needed (in 13%). Most (80%) of the patients felt that they needed medical attention within 24 hours after the onset of their problem. Most (83%) of the respondents would have sought medical attention at another walk-in clinic, from their regular physician or at an emergency department had the clinic been closed. Only 36% and 18% of the patients respectively responded that their regular physician worked evenings or weekends. Most of the visits to the clinic were outside regular weekday business hours. The level of satisfaction with the service received at the clinic was high. The extended hours and no-appointment philosophy of walk-in clinics, coupled with family physicians'' reluctance to work evenings and weekends, have made such clinics an attractive option for patients with primary care problems that they believe require prompt attention.     

Management of acute stroke in the elderly: preliminary results of a controlled trial.

A randomised controlled trial compared the management of elderly patients with acute stroke in a stroke unit and medical units. A significantly higher proportion of patients discharged from the stroke unit (78 of the 155 admitted) were assessed as independent compared with patients discharged from medical units (49 of the 152 admitted). The intensive use of treatment that might have been implied by creating a stroke unit did not occur, although almost all the patients admitted to the unit received occupational therapy while only 47% of the patients admitted to medical units received occupational therapy. The delay before starting treatment was significantly shorter in the stroke unit. Results of this trial show that the stroke unit improved the natural history of stroke by increasing the proportion of patients who were returned to functional independence.