Changing attitudes and practices in foregoing life-sustaining treatments

Advances in medical technology and practices have been associated with improved patient outcomes. At times, the price of this progress has included great financial costs and human suffering. During the last two decades, there have been significant changes in medical practices in America. In the late 1960s and early 1970s, the removal of a respirator or hydration or nutrition from a patient who was not brain dead was considered a deviation from accepted medical practices. In 1976, the Quinlan case allowed the removal of a ventilator from a patient in a persistent vegetative state. Subsequent court decisions in the 1980s have equated hydration and artificial feeding with other forms of life-sustaining treatments and have allowed their withdrawal in patients who were not terminally ill. Prominent physicians have recently stated that it is not immoral for a physician to assist in the rational suicide of a terminally ill patient. Active euthanasia programs in the United States are likely in the near future.     

The right to die in the minimally conscious state

The right to die has for decades been recognised for persons in a vegetative state, but there remains controversy about ending life-sustaining medical treatment for persons in the minimally conscious state (MCS). The controversy is rooted in assumptions about the moral significance of consciousness, and the value of life for patients who are conscious and not terminally ill. This paper evaluates these assumptions in light of evidence that generates concerns about quality of life in the MCS. It is argued that surrogates should be permitted to make decisions to withdraw life-sustaining medical treatment from patients in the MCS.     

Medical decisions concerning the end of life: a discussion with Japanese physicians.

OBJECTIVES: Life-sustaining treatment at the end of life gives rise to many ethical problems in Japan. Recent surveys of Japanese physicians suggested that they tend to treat terminally ill patients aggressively. We studied why Japanese physicians were reluctant to withhold or withdraw life-support from terminally ill patients and what affected their decisions. DESIGN AND PARTICIPANTS: A qualitative study design was employed, using a focus group interview with seven physicians, to gain an in-depth understanding of attitudes and rationales in Japan regarding medical care at the end of life. RESULTS: Analysis revealed that physicians and patients' family members usually make decisions about life-sustaining treatment, while the patients' wishes are unavailable or not taken into account. Both physicians and family members tend to consider withholding or withdrawing life-sustaining treatment as abandonment or even killing. The strongest reason to start cardiopulmonary resuscitation- and to continue it until patients' family members arrive-seems to be the family members' desire to be at the bedside at the time of death. All physicians participating in our study regarded advance directives that provide information as to patients' wishes about life-sustaining treatment desirable. All expressed concern, however, that it would be difficult to forego or discontinue life-support based on a patient's advance directive, particularly when the patient's family opposed the directive. CONCLUSION: Our group interview suggested several possible barriers to death with dignity and the appropriate use of advance directives in Japan. Further qualitative and quantitative research in this regard is needed.     

Seven legal barriers to end-of-life care: myths, realities, and grains of truth

OBJECTIVE: The American College of Physicians-American Society of Internal Medicine (ACP-ASIM) End-of-Life Care Consensus Panel was convened in 1997 to identify clinical, ethical, and policy problems in end-of-life care, to analyze critically the available evidence and guidelines, and to offer consensus recommendations on how to improve care of the dying. Topic selection and content presentation were carefully debated to maximize the project's focus on providing practical clinical and other guidance to clinicians who are not specialists in palliative care. This statement examines current legal myths, realities, and grains of truth in end-of-life care. PARTICIPANTS: The Consensus Panel comprises 13 medical and bioethics experts, clinicians, and educators in care at the end of life selected by the Ethics and Human Rights Committee, College leadership, and the Center for Ethics and Professionalism at the ACP-ASIM. EVIDENCE: A literature review including a MEDLINE search of articles from 1970-1998 and review of end-of-life care literature and organizational bibliographies was conducted. Unpublished sources were also identified by participants, as was anecdotal clinical experience. CONSENSUS PROCESS: The draft statement was debated by panel members over a series of 3 to 4 meetings. For this statement, the initial draft and subsequent revised drafts were discussed in 1998-1999. The statement then underwent external peer review and revision before panel approval and the journal peer review process. CONCLUSIONS: Legal myths about end-of-life care can undermine good care and ethical medical practice. In addition, at times ethics, clinical judgment, and the law conflict. Patients (or families) and physicians can find themselves considering clinical actions that are ethically appropriate, but raise legal concerns. The 7 major legal myths regarding end-of-life care are: (1) forgoing life-sustaining treatment for patients without decision-making capacity requires evidence that this was the patient's actual wish; (2) withholding or withdrawing of artificial fluids and nutrition from terminally ill or permanently unconscious patients is illegal; (3) risk management personnel must be consulted before life-sustaining medical treatment may be terminated; (4) advance directives must comply with specific forms, are not transferable between states, and govern all future treatment decisions; oral advance directives are unenforceable; (5) if a physician prescribes or administers high doses of medication to relieve pain or other discomfort in a terminally ill patient, resulting in death, he/she will be criminally prosecuted; (6) when a terminally ill patient's suffering is overwhelming despite palliative care, and he/she requests a hastened death, there are no legally permissible options to ease suffering; and (7) the 1997 Supreme Court decisions outlawed physician-assisted suicide. Many legal barriers to end-of-life care are more mythical than real, but sometimes there is a grain of truth. Physicians must know the law of the state in which they practice. JAMA. 2000;284:2495-2501.     

Adaptation of children to a chronically ill or mentally handicapped sibling.

The presence of a chronically ill or mentally handicapped child in a family can be a stress for the child's siblings, who often are ill informed about the nature and prognosis of the illness, may be uncertain what is expected of them in the caregiving role, may feel their own identities threatened, and may experience ostracism by their friends and misunderstanding at school. Although individual reactions vary widely, feelings of anger, guilt, resentment and shame are commonly reported. Excessive responsibility and concern about one's identity may add to these feelings and culminate in psychologic problems in the sibling. The physician caring for the family must be alert for symptoms of emotional disturbance or social maladjustment among the siblings of chronically ill or mentally handicapped children and should be prepared to counsel the family or refer them to a counsellor experienced in this area. In general, the first step is to be sure that the sibling is fully informed about the condition and to encourage frank discussion between the parents and the handicapped child's siblings.     

Renal transplantation for children: another view

Two doctors urge the use of transplant procedures in the treatment of end stage renal disease in children for those children and families whose quality of life is apt to be improved by it but suggest restraint in those whose psychosocial status has demonstrated deterioration. They recommend that parents and physician work together with a child psychiatrist to explain medical problems to children and to translate their responses into the medical system of decision making; the option of no further treatment other than supportive care should be offered to children with extremely poor quality of life.     

Attitudes of Hungarian students and nurses to physician assisted suicide

In Hungary, which has one of the highest rates of suicide in the world, physician assisted suicide (PAS) and euthanasia are punishable criminal acts. Attitudes towards self destruction and assisted suicide are, however, very controversial. We investigated the attitudes of medical students, nurses and social science students in Hungary towards PAS, using a twelve item scale: the total number of participants was 242. Our results indicate a particular and controversial relationship between attitudes towards assisted suicide in Hungary and experience with terminally ill people. The social science students, who had the fewest personal experiences with terminally ill patients, are characterised by the most permissive attitudes towards assisted suicide. Nurses, who had everyday contact and experience with these patients, were the most conservative, being least supportive of assisted suicide. The attitudes of medical students, the would be physicians, are somewhere between those of nurses and social science students.     

Attitudes of house officers toward a hospice on a medical service

A hospice program (HP) was established on the medical service at the Denver Veterans Administration Medical Center (DVAMC) for the care of the terminally ill cancer patients and to integrate such care into house staff training. A two-bed inpatient unit was managed by an intern, a resident, and the attending physician with the aid of a multidisciplinary team. During the program's first year, 29 patients were cared for with an average inpatient stay of 26 days. Twenty-nine out of a possible 33 house officers returned questionnaires evaluating their hospice experience. Twenty-eight respondents felt that the hospice program was appropriate in a teaching hospital. Over half indicated improved awareness of the psychological problems of their patients and families. Two-thirds of the house staff members felt that the HP changed their approach to pain control and made them more comfortable in dealing with terminally ill patients. From this study, it can be concluded that a hospice program can be successfully integrated into an active medical teaching service.     

Decisions to abate life-sustaining treatment for nonautonomous patients. Ethical standards and legal liability for physicians after Cruzan

The lives of hopelessly ill patients often are prolonged because physicians are uncertain of the legal consequences of discontinuing life-sustaining treatment, particularly when a patient lacks decision making capacity. Physician uncertainty may increase in the light of the U.S. Supreme Court's Cruzan decision, which upheld Missouri's refusal to support a family's request to discontinue tube feeding a patient in a persistent vegetative state. Weir, an ethicist, and Gostin, an attorney, examine the body of case law through Cruzan related to the issue of abating life-sustaining treatment for nonautonomous patients, including decisions on the right to refuse treatment, the role of surrogate decision makers, types of treatment that may be abated, and the threat of legal liability. They conclude that physicians need not fear the legal consequences of discontinuing life-sustaining treatment if an appropriate decision making process has been followed.     

Withdrawal of life support: intensive caring at the end of life

The technology and expertise of critical care practice support patients through life-threatening illnesses. Most recover; some die quickly; others, however, linger--neither improving nor acutely dying, alive but with a dwindling capacity to recover from their injury or illness. Management of these patients is often dominated by the question: Is it appropriate to continue life-sustaining therapy? Patients rarely participate in these pivotal discussions because they are either too sick or too heavily sedated. As a result, the decision often falls to the family or the surrogate decision maker, in consultation with the medical team. Decisions of such import are emotionally stressful and are often a source of disagreement. Failure to resolve such disagreements may create conflict that compromises patient care, engenders guilt among family members, and creates dissatisfaction for health care professionals. However, the potential for strained communications is mitigated if clinicians provide timely clinical and prognostic information and support the patient and family with aggressive symptom control, a comfortable setting, and continuous psychosocial support. Effective communication includes sharing the burden of decision making with family members. This shift from individual responsibility to patient-focused consensus often permits the family to understand, perhaps reluctantly and with great sadness, that intensive caring may involve letting go of life-sustaining interventions.     

The care of patients with severe chronic pain in terminal illness

The care of terminally ill patients with severe chronic pain should provide treatment that permits these patients to close their lives with dignity and purpose. Analgesics, both opioid and nonopioid, are available and when properly used can provide effective relief of pain for most terminally ill patients. It is incumbent on the physician and on all others who care for the dying patient with severe chronic pain to understand clearly the dynamics of the pain experience, the clinical pharmacology of analgesics, and the needs of the patient, family, and friends.     

Smoking rates and attitudes to smoking among medical students: a 2009 survey at the Nagoya University School of Medicine

Since smoking is implicated in many diseases, medical professionals are expected to contribute to the reduction of smoking rates in their practice. Medical students are also expected to learn the importance of practical measures against smoking. This study surveyed the smoking rates and attitudes to smoking among medical students of the Nagoya University School of Medicine. Out of 612 students in their 1st to 6th year in 2009, 31 students answered "yes" to the question "Did you smoke one or more cigarettes this past month?" and eight students did not respond. The maximum smoking rate was 6.4% (39/612). The respective rates of students to accept smoking by doctors, co-medical personnel, patients in general, and terminally ill patients were 50.8% in males and 38.9% in females, 51.3% in males and 41.6% in females, 41.4% in males and 23.0% in females, 80.5% in males and 84.1% in females. This survey demonstrated that though smoking rates among medical students were relatively low, many accepted smoking, especially for terminally ill patients.     

Dying in a West Virginia acute care hospital: what is it like?

To gain insight into the demographics and experiences of dying patients in a West Virginia acute care hospital, a chart review was conducted of all patients dying over a four-week period in 1997. Most of these patients were usually older with chronic progressive diseases. Half the patients underwent life-sustaining treatment in the last three days of life, and most patients had multiple nonpalliative interventions during this period. Interventions were refused or requested to be stopped by patients or families in over one third of the cases. A poor expected outcome was documented for more than two-thirds of the group. Do-Not-Resuscitate orders were written for most patients often within three days of death. Pain assessment was poorly documented. These findings are consistent with other studies of the hospitalized dying. Reasons for the continuation of non-palliative measures in the terminally ill are explored. Incorporation of palliative care programs into the hospital setting is recommended as a means to improve end-of-life care.     

The right to information for the terminally ill patient.

OBJECTIVES: To analyse the attitudes of medical personnel towards terminally ill patients and their right to be fully informed. DESIGN: Self-administered questionnaire composed of 56 closed questions. SETTING: Three general hospitals and eleven health centres in Granada (Spain). The sample comprised 168 doctors and 207 nurses. RESULTS: A high percentage of medical personnel (24.1%) do not think that informing the terminally ill would help them face their illness with greater serenity. Eighty-four per cent think the patient's own home is the best place to die: 8.9% of the subjects questioned state that the would not like to be informed of an incurable illness. CONCLUSION: In our opinion any information given should depend on the patient's personality, the stage of the illness and family circumstances. Our study confirms that a hospital is not the ideal environment for attending to the needs of the terminally ill and their families.     

脊髓栓系综合征患儿父母病耻感的质性研究

  目的  探索先天性因素所致的脊髓栓系综合征患儿父母连带病耻感的体验与来源及其应对方式，以期为制定针对性干预措施提供依据。  方法  采用现象学研究方法，目的抽样法选取2018年2月—2019年12月安徽省某三甲儿童专科医院神经外科18例诊断为脊髓脊膜膨出、脊柱裂、皮毛窦伴脊髓栓系综合征的患儿父母，进行半结构式访谈，现场录音，根据colaizzi 7步分析法对资料进行整理分析。  结果  先天性因素所致的脊髓栓系综合征患儿父母连带病耻感体验归结为自卑与抱怨、歉疚与自责、焦虑与担忧3个主题；来源归纳为:疾病知识缺乏、家庭经济不力、消极社会支持和被歧视与冷遇4个主题；应对方式归结:被动等待、孤立回避、积极面对3个主题。  结论  先天性因素所致脊髓栓系综合征患儿父母连带病耻感体验复杂，来源有社会因素、家庭因素、个人因素，其主动应对患儿疾病照护能力不足，医护人员应根据其不同的心理体验及来源与应对方式，给予针对性的干预措施，提供疾病知识宣教、科普宣传、照护技能指导和特殊疾病资助政策等，提高父母对疾病的认识，降低其连带病耻感，提升其积极应对能力，直面问题，解决问题，配合治疗。      

Comments on an obstructed death -- a case conference revisited: commentary 1

The paper comments on Scott Dunbar's "An obstructed death and medical ethics," arguing contra Dunbar that we should not view truth-telling to the terminally ill as primarily governed by principles of veracity and respect for autonomy. All such rules are of limited value in medical ethics. We should instead turn to an ethics deriving from the centrality of moral relationships and virtues. A brief analysis of the connections between moral relationships and moral rules is offered. Such an ethics would lower the value that philosophical fashion places on truth-telling and autonomy and leave decisions about truth-telling and the terminally ill more dependent on the circumstances of particular cases.     

Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers

CONTEXT: Euthanasia and physician-assisted suicide (PAS) are highly controversial issues. While there are studies of seriously ill patients' interest in euthanasia and PAS, there are no data on the attitudes and desires of terminally ill patients regarding these issues. OBJECTIVE: To determine the attitudes of terminally ill patients toward euthanasia and PAS, whether they seriously were considering euthanasia and PAS for themselves, the stability of their desires, factors associated with their desires, and the proportion of patients who die from these interventions. DESIGN: Prospective cohort of terminally ill patients and their primary caregivers surveyed twice between March 1996 and July 1997. SETTING: Outpatient settings in 5 randomly selected metropolitan statistical areas and 1 rural county. PARTICIPANTS: A total of 988 patients identified by their physicians to be terminally ill with any disease except for human immunodeficiency virus infection (response rate, 87. 4%) and 893 patient-designated primary caregivers (response rate, 97. 6%). MAIN OUTCOME MEASURES: Support for euthanasia or PAS in standard scenarios; patient-expressed considerations and discussions of their desire for euthanasia or PAS; hoarding of drugs for suicide; patient death by euthanasia or PAS; and patient-reported sociodemographic factors and symptoms related to these outcomes. RESULTS: Of the 988 terminally ill patients, a total of 60.2% supported euthanasia or PAS in a hypothetical situation, but only 10. 6% reported seriously considering euthanasia or PAS for themselves. Factors associated with being less likely to consider euthanasia or PAS were feeling appreciated (odds ratio [OR], 0.65; 95% confidence interval [CI], 0.52-0.82), being aged 65 years or older (OR, 0.52; 95% CI, 0.34-0.82), and being African American (OR, 0.39; 95% CI, 0. 18-0.84). Factors associated with being more likely to consider euthanasia or PAS were depressive symptoms (OR, 1.25; 95% CI, 1.05-1. 49), substantial caregiving needs (OR, 1.09; 95% CI, 1.01-1.17), and pain (OR, 1.26; 95% CI, 1.02-1.56). At the follow-up interview, half of the terminally ill patients who had considered euthanasia or PAS for themselves changed their minds, while an almost equal number began considering these interventions. Patients with depressive symptoms (OR, 5.29; 95% CI, 1.21-23.2) and dyspnea (OR, 1.68; 95% CI, 1.26-2.22) were more likely to change their minds to consider euthanasia or PAS. According to the caregivers of the 256 decedents, 14 patients (5.6%) had discussed asking the physician for euthanasia or PAS and 6 (2.5%) had hoarded drugs. Ultimately, of the 256 decedents, 1 (0.4%) died by euthanasia or PAS, 1 unsuccessfully attempted suicide, and 1 repeatedly requested for her life to be ended but the family and physicians refused. CONCLUSIONS: In this survey, a small proportion of terminally ill patients seriously considered euthanasia or PAS for themselves. Over a few months, half the patients changed their minds. Patients with depressive symptoms were more likely to change their minds about desiring euthanasia or PAS. JAMA. 2000;284:2460-2468.     

Life, death, and the dollar sign. Medical ethics and cost containment

The development of strategies to contain rising medical costs has the potential to alter the physician's ability to decide on the use of life-support technology. The question of whether to provide maximum life-sustaining measures may become subject to financial considerations. The intrusion of diagnosis related groups, health maintenance organizations, and preferred provider organizations into the physician patient relationship is compounded by legal liability for decisions where cost appears to have been a consideration. Physicians and hospitals may no longer be able to be unbiased patient advocates. Johnson suggests the use of review committees and other knowledgeable but disinterested parties to share responsibility and act solely in the patient's best interests.     

Respite care on a children's ward

In March 1984 a short term respite care facility for handicapped children was opened in a children's ward catering primarily for acute medical and surgical problems. The facility was based on a four bedded room designed so that if beds became short in the main ward it could revert immediately to the care of acutely sick children. Three nurses were appointed specifically to staff the facility, the nursing budget for the rest of the ward being reduced proportionately. Conversions were funded by charities and some of the conversion work done by volunteers. The main users were totally dependent children aged under 5 with severe mental and physical handicaps. Parents found the service invaluable, and in addition to planned admissions it was usually possible to accept a child at short notice--for example, when some domestic crisis occurred. Only very rarely was admission impossible because of the needs of acutely ill children. A short term respite care facility not only helps parents cope and may provide beneficial experience for a handicapped child but is also a useful training ground for medical students and junior staff.     

Enforcing patient preferences. Linking payment for medical care to informed consent

The legal and ethical doctrine of informed consent is well accepted in modern medicine. Nonetheless, medical interventions sometimes take place in the absence of informed consent, particularly in the case of life-sustaining medical procedures. These procedures ordinarily are reimbursed by third-party payers. This article proposes as a strategy to ensure greater attention to patient preferences in medical decision making that financial reimbursement for each medical service be linked to a requirement of valid patient (or surrogate) consent to the service involved. Utilization review bodies could monitor informed consent in the same way that other aspects of necessity, appropriateness, and quality are now monitored.