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Surgical and anesthetic decisions for children with terminal illness.

Terminal conditions such as congenital anomalies and cancer are a significant source of infant and childhood mortality. Many terminally ill children are considered for operative procedures each year. These procedures may be palliative or elective, and the prognosis and natural course of the terminal illness play a significant role in determining the appropriateness of the surgical procedure. Providing anesthesia to a terminally ill patient is a complex task requiring an appropriate balance between adequate anesthesia and hemodynamic normality. Some children with a terminal condition will have a standing "Do-Not-Resuscitate" order that should not necessarily be reversed. Surgeons, anesthesiologists, and family members must consider a number of factors when determining the appropriateness of an operation for a dying patient, including the rights of the child.

Adolescent↗

Psychiatric assessment of the suicidal terminally ill.

Terminally ill patients who refuse life-supporting treatments and express a wish to die are often viewed in the same light as suicidal patients who are medically well. Terminally ill patients who are depressed should be treated with antidepressants, but if the wish to die persists, it should be respected.

Critical Illness↗

Praying with the terminally ill.

Terminally ill persons and their families will communicate their own prayer needs to healing persons who are attending carefully. A number of guidelines may also be helpful to healers in developing the personal characteristics needed to minister effectively and in determining when and how to pray with patients.

Grief↗

Correlates of spiritual well-being in terminally ill persons with AIDS and terminally ill persons with cancer.

In an effort to determine if terminally ill patients with AIDS had greater religious and spiritual care needs than other terminally ill patient populations, particularly those with cancer, a study was conducted in a community-based hospice in the southeast. The purpose of the study was to compare the perceptions of spiritual well-being, loneliness, social support, health hardiness, pain, and functional status among terminally ill clients with cancer and terminally ill clients with AIDS in a hospice setting and to examine predictors of spiritual well-being in a hospice population. A sample of 55 hospice patients completed the Correlates of Spiritual Well-Being Scale (COSWEB), which includes a demographic data sheet and instruments to measure spiritual well-being, loneliness, health hardiness, social support, functional status, and pain. Patients with AIDS reported significantly lower spiritual well-being than did patients with cancer and other chronic, terminal illnesses. Patients with AIDS also reported significantly greater loneliness than other patient populations. The number of social supports for patients with AIDS was significantly lower than for cancer patients and other groups; moreover, patients with AIDS were significantly more dissatisfied with their supports than other patient groups. The best predictors of spiritual well-being in this study were social support and loneliness, which explained 47% of the variance in spiritual well-being. The results of this study suggest differences between specific groups of hospice patients. Patients with AIDS may be less spiritually well than other terminally ill patient populations due to decreased support systems, dissatisfaction with supports, greater feelings of loneliness, younger ages on entry to hospice, fewer family supports, lack of recognized long-term relationships, and related issues such as homophobia, perceived rejection by religious denominations, unstable living environments, economic disadvantages, and less time to process life events/meaning. Findings in this study and similar future studies can better enable health care providers to allocate time and resources to various terminally ill patient populations to achieve higher quality care outcomes in general and greater spiritual well-being in particular.

Acquired Immunodeficiency Syndrome↗

Continuing care of the terminally ill.

Terminal care has specific goals for the attending medical team. In truth, most dying patients do not expect miracles. What they ask for is assurance that they will not be abandoned or discarded because they have an incurable condition. Truth can be gentle and merciful, and not necessarily without hope. Grieving is normal for patients, families, nurses and doctors. Weeping with sad friends is not evidence of weakness, rather it displays great empathy, and can be therapeutic for patients and doctors together.

Family↗

Differences between terminally ill cancer patients who died after euthanasia had been performed and terminally ill cancer patients who did not request euthanasia.

Palliative care, directed at improving the quality of life of terminally ill patients, is generally not aimed at any form of postponing or hastening death. It is possible that high quality palliative care could prevent requests for euthanasia. However, empirical evidence on this issue is scarce. In a national survey of end-of-life medical decisions in The Netherlands the subject of care at the end of life has been addressed. Data on terminally ill cancer patients who died after their request was granted and euthanasia had been performed were compared with those of terminally ill cancer patients who did not request euthanasia. The results show that the prevalence and severity of symptoms e.g., pain, feeling unwell, nausea, was higher in patients who died after their request was granted and euthanasia had been performed. No differences concerning the treatment of symptoms or the care provided were found between the two groups. The results suggest that the practice of euthanasia is mainly related to the patient's suffering.

Adult↗

Caring for the terminally ill adolescent.

Terminally ill adolescents, a heterogeneous group, face unique problems in coming to terms with the prospect of death and dying. In parallel, the psychosocial sequelae of a terminal illness in the adolescent, and their effects on the family and health professionals, present unique challenges for management. Using a developmental framework, we examine issues surrounding the care of dying adolescents and present strategies for their management.

Adolescent↗

Living wills and medical treatment of the terminally ill.

A terminally ill individual may sign a living will, which is a document requesting to be allowed to die a natural death, have it witnessed and address this wish to a relative, physician, lawyer or medical facility. No legislation, however, exists in Canada concerning living wills. Consequently, establishing the legal situation is based on both legislative and non-legislative sources. This article explores implications of the Criminal Code, the application of rules of criminal and civil law, provisions of the Charter, living will legislation in the United States and the power of attorney approach regarding this controversial issue.

Canada↗

Understanding the experience of pain in terminally ill patients.

BACKGROUND: Terminally ill patients commonly experience substantial pain. Unresolved pain has been cited as evidence that end-of-life care is of poor quality. However, the data on which that conclusion is based are limited. We aimed to provide additional data on the experience of pain in such patients. METHODS: We interviewed 988 terminally ill patients from six randomly selected US sites. We asked them who had treated their pain in the previous 4 weeks (primary-care physician, pain specialist, or both), and whether they wanted more pain medication than they were receiving, or why they did not want more. FINDINGS: 496 (50%) terminally ill patients reported moderate or severe pain. 514 (52%) individuals had seen a primary-care physician for treatment of pain in the previous 4 weeks and 198 (20%) saw a pain specialist. Of those who had been treated by their primary-care physician, 287 (29%) wanted more therapy, 613 (62%) wanted their pain therapy to remain the same, and 89 (9%) wanted to reduce or stop their pain therapy. Several reasons for not wanting additional therapy were offered-fear of addiction, dislike of mental or physical side-effects, and not wanting to take more pills or injections. We saw no association between disease and amount of pain between disease and the desire for more treatment. Black patients were more likely to seek additional pain therapy, see a pain specialist, and refuse additional medication because of fear of addiction than other populations. INTERPRETATION: Although half of terminally ill patients experienced moderate to severe pain, only 30% of them wanted additional pain treatment from their primary-care physician. The number of patients experiencing pain remains too high. However, the number is not as large as perceived. Additionally, most are willing to tolerate pain. Furthermore, the experience of pain is constant across major terminal diseases.

Adult↗

[A clinical study using octreotide in relieving gastrointestinal symptoms due to bowel obstruction in a terminally ill cancer patient].

Terminally ill cancer patients with complicated bowel obstructions often have poor quality of life (QOL) due to gastrointestinal symptoms such as nausea and vomiting. Many of these patients are inoperable because of poor general conditions, and half of these patients can't be managed by conventional antiemetics. There are many reports indicating octreotide is effective for these patients. In the present study, 13 patients (5 patients without a nasogastric tube and 8 patients with) were administered octreotide at 300 microg/day by 24 hours continuous subcutaneous infusion. Among the effectively evaluable 10 cases, 6 cases (60.0%) were assessed as effective according to the efficacy criteria based on the JCOG toxicity scale. In the 6 cases who had nasogastric tubes, the nasogastric aspirates decreased from 890 ml (550-1,950) to 480 ml (180-1,790). Vomiting was successfully controlled after the removals of nasogastric tubes in 4 out of 6 cases (66.7%), regarding safety, 2 out of 13 cases (15.4%) showed an excess of liver enzymes but no clinically suspected adverse effect was observed. Octreotide is effective and well tolerated in terminally ill cancer patients with malignant bowel obstruction.

Adult↗

Ethical decisions regarding nutrition and the terminally ill.

Care of the terminally ill is rewarding and challenging. Nurses have the potential to affect the quality of these patients' lives. A recurrent theme voiced by terminally ill patients and their families is the nutritional ramifications associated with the cessation of nutritional intake. Various ethical perspectives provide a useful guide for decision making when determining whether fluids and nutrition should be continued in the terminally ill. This article will discuss various ethical perspectives in relation to nutrition cessation in the terminally ill. Basic physiologic changes that occur in the terminal patient will also be addressed. Nurses play an important role in insuring quality of care, particularly in supporting patients and families as they make decisions regarding nutritional management at the end of life.

Adenocarcinoma↗

Is the clock ticking for terminally ill patients in Israel? Preliminary comment on a proposal for a bill of rights for the terminally ill.

This paper presents and discusses a recent Israeli proposal to legislate on the rights of the dying patient. A gap exists between elitist biases of the committee proposing the law, and popular values and sentiments. The proposed law divides the dying patients into two groups: "those who wish to go on living" and "those who wish to die". The former will have a right to life prolonging extraordinary care. It is not clear who would foot the bill for this care. Also it is hard to see how this munificence could fail to discriminate against all other patients. Both the secular ethicists and the rabbis involved in drawing up the proposal accepted the assumption that it is good for some terminal patients to die. The rabbis objected, however, to direct and active interventions that shorten life. The solution arrived at was to install timers in the ventilators so as to allow them to expire automatically unless the patient wishes for their resetting.

Decision Making↗

Loss and terminal illness.

The experience of terminal illness can best be viewed as a situation of multiple losses involving the dying person, family members and friends, and the health care providers engaged in offering services to them. It is a major transition during which the central participants must cope with the personal meanings of the forthcoming death as well as other losses brought about by the disease process, medical treatments, and the need to provide care for the dying person. How families adapt to the stresses and changes imposed by the experience of living with dying depends on their previous experiences with death, their established patterns of communication about serious matters, and their decision-making practices. Some individuals and families are at greater risk than others for developing maladaptive responses and behaviors during and after the experience of terminal illness. Risk factors to be considered in making hypotheses about the potential for maladaptive reactions include the strength of the attachment to the dying person, uncontrollable and distressing symptoms, and coping limitations associated with age and other factors contributing to increased vulnerability to the demands of continuous change. Working effectively with different kinds of families during the transition of terminal illness can best be accomplished within a conceptual framework built upon knowledge about people undergoing change. The concept of safe conduct can serve as an overall guide for the creation of nursing services designed to offer personalized care and accessibility of professional help at times of maximum need by the family. Assisting dying patients and their families toward the achievement of their personal goals is fundamental to the idea of safe conduct. The delivery of nursing care in terminal illness requires an orientation to assessment as an ongoing process that makes use of knowledge about disease processes, medical treatments, individual and group adaptations to loss, risk factors suggestive of maladaptive responses, and family dynamics in relation to crisis and change. Although nurses bring expert knowledge about available treatments and resources, the process of assessment and decision-making about what needs to be done can be best accomplished through a process of contracting with the patient and family. These mutual agreements need to be concerned with the establishment of specific goals, plans for achieving them, available resources within the family, division of responsibility, time limits on the achievement of objectives, and mutual evaluation of the process and the outcomes.(ABSTRACT TRUNCATED AT 400 WORDS)

Adaptation, Psychological↗

Life stories of families with a terminally ill child.

Family units with a terminally ill child have a tendency to withdraw and this isolation may lead to problems in their mental health. A tendency with psychologists, clergy and helpers from other professions is to act as ideal experts on the lives of saddened people. From painful personal experience, this does not seem to enable acquiescence. Therefore, the aim of research on families with terminally ill children, was to explore and describe their lives and to develop an approach to facilitate their families to obtain acquiescence. In this article however, attention will be given to the life-world of families with terminally ill children. The research consists of two phases. In phase one the experiences of four families with terminally ill children are explored and described by means of phenomenological, unstructured, in-depth interviews. In phase two an acquiescence approach, which was designed for educational psychologists to facilitate families with terminally ill children to achieve acquiscence, is described. This approach is based on results from phase one. This article focuses on phase one. In this phase four families were interviewed individually, in the privacy of their homes. The interviews were audiotaped, and were transcribed for the purpose of data gathering. The data was analysed according to Tesch's method and a literature control was performed to verify the results. Guba's model for the validity of qualitative research was used. Five recurrent themes were identified: 1. Families are able to choose their reactions to the crises of having a terminally ill child. 2. When there is a terminally ill child in the family, the family's values change. 3. Acceptance of the circumstances with a terminally ill child, makes life easier. 4. As families with a terminally ill child learn to live every moment to the full, their quality of life improves. 5. As people learn to accept support, their quality of life with a terminally ill child improves. The research indicated that families with terminally ill children move through a lonely and painful process, which is characterised by growth at the end. This growth implies that the life skills mentioned above, were obtained after years of unimaginable suffering. In order to reduce this period of suffering, an acquiescence approach was designed for educational psychologists to facilitate discovery and acceptance regarding the above life skills with family units and thus allow them to achieve acquiescence.

Attitude↗

Suicide in the medically and terminally ill: psychological and ethical considerations.

For the clinician who works in a behavioral-medicine or primary-care setting, this article presents the association between medical illness and suicide. Specific illnesses such as HIV/AIDS, cancers of the brain and nervous system, and multiple sclerosis all are associated with an increased risk of suicide. Rates of major depression rise with increasing rates of serious medical illness; however, depression and associated suicidal ideation tend to be undertreated in the medically ill. When medical illness becomes terminal, the clinician's patient may be confronted with difficult end-of-life decisions. Great concern exists in the United States about the ethics of end-of-life decision making and the issue of physician-assisted suicide. The latter part of this article examines the terminally ill patient's right to refuse life-sustaining treatments or to have death hastened according to the principle of the "double effect." It also reviews psychologists' apparent acceptance of the concept of rational suicide, as well as assisted suicide under certain conditions, and offers several caveats. A reexamination of psychology's role, standards, and principles with respect to rational suicide is recommended.

Behavior Therapy↗