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Reconciling Quinlan and Saikewicz: decision making for the terminally ill incompetent.

One of the most perplexing problems in the medicolegal field concerns the criteria on which decisions not to treat terminally ill incompetent patients should be made. These decisions traditionally have been made by physicians in hospitals--sometimes with the assistance of the patient's family--on the basis of their perceptions of the patient's "best interests." Recently, two state supreme courts have ruled on this question. The New Jersey Supreme Court, in the Quinlan case, developed a medical prognosis criterion, and permitted the patient's guardian, family, and physicians to apply it with the concurrence of a hospital "ethics committee." The Massachusetts Supreme Judicial Court, in the Saikewicz case, adopted, on different facts, the test of "substituted judgment" to be applied by a probate court after an adjudicatory hearing. The two cases have been interpreted by many in the medical profession as representing conflicting viewpoints--one supportive of traditional medical decision making and the other distrustful of it. It is the thesis of this Article that Quinlan and Saikewicz are in fundamental agreement and can be reconciled by the next state supreme court that rules on this question. Both courts enunciate a constitutional right to refuse life-sustaining treatment, based on the right to privacy. They agree that incompetents should be afforded the opportunity to exercise this right, and that certain state interests can overcome it. They agree also that physicians should be permitted to make medical judgments, and that societal judgments belong in the courts. The differences in how the opinions are perceived result from the interplay of several factors: the differences in the facts of the cases; the inarticulate use of the term "ethics committee" by the Quinlan court; the literal interpretation of the role of such a committee by the Saikewicz court; a desire for 100 percent immunity on the part of physicians and hospital administrators in Massachusetts; and advice from their counsel on how such immunity can be guaranteed. It is the author's hope that this Article will help to dispel much of the misinformation surrounding these two cases, and to refocus the debate on how decisions should be made for the terminally ill incompetent patient on the real issues regarding criteria and the decision-making process that remain to be resolved.

Decision Making↗

Responding to the needs of the terminally ill through laughter and play.

Care for the terminally ill has greatly expanded. Humor and play, however, remain largely unexplored, surrendered to the cultural expectation of dignity and respect for the dying. This paper suggests several uses of humor and play with the dying, and the benefits of these interventions with patients, families, and care givers.

Family↗

Nurses' communication of prognosis and implications for hospice referral: a study of nurses caring for terminally ill hospitalized patients.

BACKGROUND: Although nurses are ideally situated to facilitate communication about prognosis and hospice referral among patients, patients' family members, and hospital staff, nurses do not always assume this task. OBJECTIVE: To identify common obstacles to nurses' discussions of prognosis and referral to hospice care with terminally ill patients in the hospital setting. METHODS: Data from a previous study were analyzed. In that study, a total of 174 experienced staff nurses working full-time in hospital practice areas where terminally ill patients routinely receive care at 6 randomly selected community hospitals in Connecticut participated. Each nurse completed a self-administered, cross-sectional survey. In this study, the open-ended responses of the nurses were examined by using content analysis and descriptive analysis. RESULTS: The most common obstacles were unwillingness of a patient or the patient's family to accept the prognosis and/or hospice, sudden death or noncommunicative status of the patient, belief of physicians' hesitance, nurses' discomfort, and nurses' desire to maintain hope among patients and patients' families. CONCLUSIONS: The reasons for noncommunication of prognosis and referral to hospice care by nurses are complex. Because limited discussion between clinicians and patients about prognosis and treatment options can reduce the likelihood of referral to hospice care, improved communication skills may result in more referrals and a smoother transition to hospice.

Attitude of Health Personnel↗

Positive feelings among terminally ill cancer patients.

For a realistic perspective on what it is like to have cancer and be in the last months of life, it is necessary to also study the positive feelings people may still experience. We set out to describe positive feelings experienced by terminally ill patients. The Depression Adjective Checklist was completed by 96 cancer patients with an estimated life expectancy of less than 3 months. On average patients endorsed 30% (3.6/12) of the positive mood items, and 25% (5.4/22) of the negative mood items. The larger part of terminally ill cancer patients with an estimated life expectancy of less than 3 months reported one or more positive mood states. A positive mood state such as 'being interested' was endorsed by more than half (65%) of the patients, other positive feelings were endorsed by a substantial proportion of patients, for example: 38% of patients endorsed feeling 'jovial' and 35% reported being 'optimistic'. Although having incurable cancer often leads to feelings of depression, mood is variable and many patients experience at least some positive feelings.

Adult↗

Randomised controlled trial of effects of coordinating care for terminally ill cancer patients.

OBJECTIVES: To measure effects on terminally ill cancer patients and their families of coordinating the services available within the NHS and from local authorities and the voluntary sector. DESIGN: Randomised controlled trial. SETTING: Inner London health district. PATIENTS: Cancer patients were routinely notified from 1987 to 1990. 554 patients expected to survive less than one year entered the trial and were randomly allocated to a coordination or a control group. INTERVENTION: All patients received routinely available services. Coordination group patients received the assistance of two nurse coordinators, whose role was to ensure that patients received appropriate and well coordinated services, tailored to their individual needs and circumstances. MAIN OUTCOME MEASURES: Patients and carers were interviewed at home on entry to the trial and at intervals until death. Interviews after bereavement were also conducted. Outcome measures included the presence and severity of physical symptoms, psychiatric morbidity, use of and satisfaction with services, and carers' problems. Results from the baseline interview, the interview closest to death, and the interview after bereavement were analysed. RESULTS: Few differences between groups were significant. Coordination group patients were less likely to suffer from vomiting, were more likely to report effective treatment for it, and less likely to be concerned about having an itchy skin. Their carers were more likely to report that in the last week of life the patient had had a cough and had had effective treatment for constipation, and they were less likely to rate the patient's difficulty swallowing as severe or to report effective treatment for anxiety. Coordination group patients were more likely to have seen a chiropodist and their carers were more likely to contact a specialist nurse in a night time emergency. These carers were less likely to feel angry about the death of the patient. CONCLUSIONS: This coordinating service made little difference to patient or family outcomes, perhaps because the service did not have a budget with which it could obtain services or because the professional skills of the nurse-coordinators may have conflicted with the requirements of the coordinating role.

Anxiety↗

Perception of empowerment by family caregivers of patients with a terminal illness in Hong Kong.

The purpose of this study is to provide an in-depth description of the nurse-facilitated empowering experiences of family caregivers of terminally ill patients in Hong Kong. Data were collected through in-depth interviews with 24 family caregivers of patients with terminal cancer. Grounded theory strategies served as the basis for data collection and analysis. Data were analysed in terms of the strategies, consequences, and interactions involved in the empowering experience. Themes included establishing an engaged relationship; providing information, knowledge and skills; affirming self-worth; and giving reassurance that the patient is under good care. The consequences of empowerment included a trusting relationship, having confidence to carry out caregiving tasks, acceptance of patient's death, sustained self-worth and feeling peace at heart. The focus of empowering experiences was related to the quality of life of the dying patients. Family caregivers require information, education, encouragement and support, and nurses are in an ideal position to meet this need. Fundamental in the empowering process is the formation of a trusting relationship and as a result the caregivers feeling they are not being abandoned or left alone in the caring process. The results of this study can help nurse interact more effectively with family caregivers, giving them direction for effective nursing practice when caring for patients with a terminal illness.

Caregivers↗

Relations between desire for early death, depressive symptoms and antidepressant prescribing in terminally ill patients with cancer.

Some patients with advanced cancer express the wish for an early death. This may be associated with depression. We examined the relations between depressive symptoms and desire for early death (natural or by euthanasia or physician-assisted suicide) in 142 terminally ill patients with cancer being cared for by a specialist palliative care team. They completed the Hospital Anxiety and Depression Scale questionnaire and answered four supplementary questions on desire for early death. Only 2 patients expressed a strong wish for death by some form of suicide or euthanasia. 120 denied that they ever wished for early release. The desire for early death correlated with depression scores. Depressive symptoms were common in the whole group but few were on antidepressant therapy. Better recognition and treatment of depression might improve the lives of people with terminal illness and so lessen desire for early death, whether natural or by suicide.

Adult↗

The effects of death education on nurses' attitudes toward caring for terminally ill persons and their families.

This study sought to determine the effectiveness of an education program on nurses' attitudes toward caring for terminally ill persons and their family members. The program, based on the hospice concept of care, included a didactic section based on Kubler-Ross' stages of death and dying, and a role-play model designed by the researcher. Data were collected from 34 licensed nurses, aged 18 to 65, practicing in the midwestern United States. The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) was designed by the researcher to assess nurses' attitudes. The FATCOD was found to be a valid and reliable tool. All nurses completed the tool before and after the education program (pre-test, post-test). Compared by a t-test, the scores for the nurses were significantly higher after participation in the educational program. The t-value was found to be 2.97, significant at the less than 0.01 level, 2-tailed probability = 0.006. These findings support the hypothesis that nurses have a more positive attitude toward caring for terminally ill persons and their family members after participation in the program, than the same nurses had before participating in the program. Demographic information including age, years of experience in nursing, highest degree held, basic type of nursing preparation and previous education on death and dying were analyzed to determine their relationship to the nurses' attitudes. The only information which demonstrated any significant relationship to the nurses' attitudes was that of previous education on death and dying. These were computed by an analysis of variance (ANOVA) F = 3.22, F prob = 0.04, significant at less than 0.05 level.(ABSTRACT TRUNCATED AT 250 WORDS)

Adolescent↗

Oral health in the terminally ill: a cross-sectional pilot survey.

This study of 20 hospice patients provided baseline information on oral and dental status in the terminally ill. For each patient, a questionnaire was completed, the mouth was examined, and an oral rinse and imprint cultures were collected to establish the prevalence and intra-oral density of yeasts, staphylococci and coliforms. Oral symptoms reported included disturbance of taste (26%), dysphagia (37%), soreness (42%), and dryness (58%). Of the 75% who wore dentures, 71% had difficulty with their prosthesis (es). A clinical diagnosis of oral candidiasis was made in 70% of subjects. The high prevalence of oral symptoms, denture problems, and candidiasis clearly affect the quality of remaining life in terminally ill patients.

Candidiasis, Oral↗

Communicating with terminally ill cancer patients and their families.

This qualitative study aimed to investigate whether 4th year undergraduate nursing students raise concerns about communication with terminally ill and dying cancer patients and their families. It focused on factors which could influence students' feelings of insecurity/security when communicating with this group of patients and their families, factors which could influence communication, and whether students felt adequately prepared for this kind of nursing. The research involved interviewing 12 student nurses in their 4th year of their undergraduate education at a Scottish university using content analysis for analyzing the data. Five themes and 13 sub-themes emerged from this analysis. The findings revealed that communicating with terminally ill and dying cancer patients in the acute setting is difficult for student nurses and issues about death and dying tended to be ignored. While it was found that university lectures about death and dying were helpful, lack of support and guidance within the clinical setting was a major concern.

Communication↗

The law regarding assisted dying for the terminally ill in the UK.

This article outlines the Assisted Dying for the Terminally Ill Bill in the UK. The conditions that must be satisfied before an attending physician can assist a patient to die are highlighted and information regarding the declaration is provided. It is not certain that the Bill will obtain legislative approval and, if it does, there are statutory provisions for monitoring each assisted death.

Euthanasia↗

Documentation of discussions about prognosis with terminally ill patients.

PURPOSE: Previous studies have suggested the importance of communicating with patients about prognosis at the end of life, yet the prevalence, content, and consequences of such communication have not been fully investigated. The purposes of this study were to estimate the proportion of terminally ill inpatients with documented discussions about prognosis, describe the nature and correlates of such discussions, and assess the association between documented discussions about prognosis and subsequent advance care planning. SUBJECTS AND METHODS: Inpatients (n = 232) at least 65 years old who had brain, pancreas, liver, gall bladder, or inoperable lung cancer were randomly selected from six randomly chosen community hospitals in Connecticut. The presence and content of discussions about prognosis, advanced care planning efforts, and sociodemographic and clinical factors were ascertained by comprehensive review of medical records using a standardized abstraction form. RESULTS: Discussions about prognosis were documented in the medical records of 89 (38%) patients. Physicians and patients were both present during the discussion in 46 (52%) of these cases. Time until expected death was infrequently documented. Having a documented discussion about prognosis was associated with documented discussions of life-sustaining treatments (adjusted odds ratio [OR] = 5.8; 95% confidence interval [CI]: 2.8 to 12.0) and having a do-not-resuscitate order (adjusted OR = 2.2; 95% CI: 1.1 to 4.2). CONCLUSIONS: Among terminally ill patients with cancer, discussions about prognosis as documented in medical charts are infrequent and limited in scope. In some cases, such documented discussions may be important catalysts for subsequent discussions of patient and family preferences regarding treatment and future care.

Advance Directives↗

Pain in terminally ill patients: guidelines for pharmacological management.

Successful pharmacological treatment of pain in terminally ill patients is possible most of the time. It requires a determination of the type of pain syndrome (i.e. nociceptive, neuropathic or mixed). Complete pain assessment also requires an understanding of other dimensions of suffering that a patient may be experiencing on psychological, social and spiritual/existential levels. The World Health Organization has introduced a three-step approach to treating pain. Opioids are the mainstay of therapy for moderate to severe pain at the end of life. Familiarity with the pharmacokinetics, equianalgesic dose and adverse effects of opioids is necessary for their safe and effective use. In addition, adjuvant analgesics such as antiepileptic drugs, antidepressants and local anaesthetics are often needed to optimise pain control, especially in patients with neuropathic pain. Given the complex aetiology of pain states, combinations of classes of adjuvants may sometimes be needed for effective treatment.

Adrenergic alpha-Agonists↗

Fostering hope in terminally ill patients.

AIM: To investigate the meaning of hope, identify strategies that terminally ill patients use in maintaining and fostering hope during the final stage of life, explore changes in hope during the dying trajectory and investigate whether the results of a North American study by Herth (1990a), that explored the meaning of hope and identified strategies to promote it, could be replicated in England. METHOD: A total of 16 adults receiving palliative care took part in the study. Cross-sectional data were collected on all participants. Longitudinal data were collected on four of the 16 participants using methodological triangulation, which encompassed a background data form, the Herth Hope Index and a semi-structured interview (Herth 1990a). FINDINGS: Hope remained present regardless of nearness to death. Seven hope-fostering categories and three hope-hindering categories were identified based on interview responses. CONCLUSION: The study supported Herth's original study (Herth 1990a), and could serve as a guide to individual practitioners and the nursing team in developing an environment and interventions that foster hope in people receiving palliative care in any setting.

Adaptation, Psychological↗

Self-administered nitrous oxide for the management of incident pain in terminally ill patients: a blinded case series.

The treatment of incident pain in terminally ill cancer patients receiving long-term opioid therapy remains a challenge. Self-administered inhaled nitrous oxide has been used for short-term analgesia in this setting, with mixed results. It is unclear whether nitrous oxide exhibits cross-tolerance with opioids, and there is the possibility of a strong placebo effect in previous unblinded reports. We report on a double-blind crossover case series, in which seven patients received either nitrous oxide/oxygen or a placebo air/oxygen mixture on each day of a two-day trial. Outcome indices were obtained before, during and after each use of the gas for anticipated incident pain. The patient population was very heterogeneous with respect to disease, pain scores and concurrent treatments. Nitrous oxide was beneficial during incidents in five of seven patients; the remaining two patients reported an overall preference for the nitrous oxide day. We conclude that a trial of self-administered inhaled nitrous oxide should be considered in patients with difficult incident pain.

Aged↗

Life review in pastoral counseling: background and efficacy for use with the terminally ill.

Research continues to confirm that sharing one's life story through the process of life review enhances psychological well-being and increases life satisfaction. Although researchers have outlined techniques and activities that may be used in life review with older adults, little work has focused on the use of life review methods with terminally ill patients. Additionally, researchers have suggested that life review can take on the form of a spiritual assessment; and that such spiritually oriented life reviews may enhance a sense of meaning and foster reconciliation as one approaches dying. In this article, the authors provide a brief review of the research on and the practice of life review. Further, by merging concepts of life review with systematic theology, they offer a sample instrument--using the example of one faith framework--with which pastoral caregivers can better approach the spiritual needs of patients and facilitate a less traumatic death in the terminally ill.

Adolescent↗

Continuous propofol infusion for the relief of treatment-resistant discomfort in a terminally ill pediatric patient with cancer.

PURPOSE: To determine the effectiveness of propofol as adjunctive therapy in the treatment of drug-resistant discomfort in a terminally ill pediatric patient. PATIENT AND METHODS: A 3-year-old child with advanced rhabdomyosarcoma and severe drug-resistant discomfort was studied. Propofol was administered as adjunctive therapy to provide relief from severe discomfort. RESULTS: Propofol was initiated with a loading dose of 1.2 mg/kg followed by a continuous intravenous infusion of 1.2 mg/kg/h. Over the next 10 days, additional loading doses were administered and the infusion rate was increased to a maximum of 32 mg/kg/h. After the addition of propofol, our patient's discomfort improved greatly without the occurrence of propofol-associated adverse events. CONCLUSIONS: Propofol appears to be an effective adjunct to opioids and a promising alternative to barbiturate therapy in the treatment of drug-resistant discomfort in terminally ill pediatric patients.

Abdominal Neoplasms↗

Hospice education about people with AIDS as terminally ill patients: coping with a new epidemic of death.

Hospice care for patients with AIDS often differs from care provided to patients with other terminal illnesses, such as cancer. We designed a seminar series to educate regional hospice staff about these differences and subsequently determined if the educational intervention was associated with improvements in their AIDS-related knowledge, attitudes, or behaviors toward patients with AIDS. Quantitative and qualitative data were collected from seminar participants (n = 63) and a similar comparison group (n = 18) at several time points. Seminar participants significantly improved their AIDS-related behaviors (p.05); and there was a trend toward knowledge improvement. Qualitative data shed light on the quantitative findings. Participants verbalized better understanding of the relatively aggressive care often given to terminally ill patients with AIDS when it enhanced quality of life.

Acquired Immunodeficiency Syndrome↗