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PubMed2005

Terminally ill infants, parents and the courts.

Parents sometimes demand 'full active treatment' for a terminally ill child, even against medical advice. They think that they should decide their child's best interests, not medical staff, who may conclude too readily that the child's life is 'not worth living'. Only parents who know and love their child can decide that. Doctors and nurses, on the other hand, feel they have the training and experience to assess the pain and distress of heroic measures and whether they are justified in cases where a child cannot survive, or will have profound disability. This paper reviews recent case law in the United Kingdom and Australia on the role and processes of courts where a hospital (or a parent) applies for a court order regarding treatment. The author concludes that it is possible but unlikely that a court would direct medical staff to provide treatment they regard as clinically inappropriate.

Australia↗
PubMed1998

[Roles and problems of nurses taking care of terminally-ill patients at home].

Since May in 1994, we have started to take care of terminally-ill patients at home to support patients who want to die at home and their family. Many patients in the terminal stage become stable temporarily from being back home, and their family are happy to care for them. Their family tend to think that they may well escape death, so they are sometimes confused when patients become worse suddenly. The author learned something important from the visiting care system in connection with two cases. Although case 1 had a short period of time at home and case 2 died in the hospital, their families were satisfied with our system and could accept patient's death without a big problem. It was very important to educate the family about death because it is very difficult to foresee a sudden change in terminal cancer patients. From the nursing standpoint, it remains to consider how to judge the patient's conduct and when to call the doctor. Another problem is whether to inform patients of their cancer or not.

Aged↗
PubMed1993

Nutritional care of the terminally ill adult.

Nutrition and hydration options are based on many considerations that arise during the various phases of the dying process. This paper includes discussion of the psychological issues affecting intake, assessment techniques to determine whether nutrient intake is adequate, feeding suggestions for the caregiving family, and some guidelines for routine and complex care of the terminally ill adult. The ultimate goal is to improve quality of life for each terminally ill individual through a focus on patient benefit and patient care.

Energy Intake↗
PubMed1999

Establishing the right of the terminally ill to adequate palliative care: the litigation alternative.

The Bazelon Center For Mental Health Law in Washington, D.C., has undertaken a palliative care project to examine how litigation might be used to secure the rights of terminally ill patients to receive adequate palliative care, including the medications necessary to relieve the pain that often accompanies a final illness. One area of inquiry is the Medicare Hospice Benefit and the requirement that, to qualify for the benefit, a patient must have a prognosis of 6 months or less to live. A second major area of inquiry is regulatory restrictions on the prescription of opioids for pain relief of terminally ill patients and whether those restrictions improperly impede the physicians in their ability to engage in effective and appropriate pain management.

Journal Article↗
PubMed2004

Care for the terminally ill: a review of deaths in the gynaecological wards of a tertiary institution, 1986-2000.

BACKGROUND: There is yet no formula to predict the expected date of death, however this information may be invaluable to the terminally ill, care givers, friends and family members to write the will, arrange for end-of-life care, settle disputes, and to make plans for burial ceremonies. OBJECTIVE: The study is an audit of all deaths in the gynaecological wards to determine the causes of death and highlight the care option for the terminally ill patient. STUDY METHODS: The admission ward registers and the duplicate copies of issued death certificates between 1986-2000 were studied. Details of the individual patients diagnosis and at death or discharge were collected and crosschecked with the patient's casenote. The collected data was subjected to statistical analysis using appropriate computer software. RESULTS: A total of 10,485 admissions were recorded in the study period. There were 89 (0.85%) deaths and 27(0.26%) discharges against medical advice. The yearly rate of death varied between 0.36% and 1.66% admissions. Patients' discharging themselves from the gynaecological wards against medical advice started in 1992, and was at a maximum (2.0%%) in 1996. Carcinoma of the cervix (30.3%) was the most frequent cause of death next was ovarian cancer (29.2%). Death following complications from criminal abortions (11.2%) was fourth while deaths subsequent to operation for uterine fibroids and ectopic pregnancies were 2.2% each. Patients dying from complication of abortion were the youngest (22.6 years +/- 9.13), while patients dying from endometrial carcinoma were the oldest (64.75 years +/- 9.84). The mean age of patients dying from advance gynacological malignancies was 44.13 years +/- 17.07, which is significantly higher than the mean age of patients dying from complications of abortion, P<0.00015 (Student's T-Test, two tail, type 2). CONCLUSION: Advanced malignancies of the cervix, ovary and chorion carcinoma are the major causes of gynaecological deaths. Next, are deaths resulting from the complication of criminal abortion. Patients' discharge against medical advice as option of care needs further investigation.

Adult↗
PubMed2006

Beethoven's terminal illness and death.

There is dispute about the cause of Beethoven's death; alcoholic cirrhosis, syphilis, infectious hepatitis, lead poisoning, sarcoidosis and Whipple's disease have all been proposed. In this article all primary source documents related to Beethoven's terminal illness and death are reviewed. The documents include his letters, the report of his physician Andreas Wawruch, his Conversation Books, the autopsy report, and a new toxicological report of his hair. His terminal illness was characterised by jaundice, ascites, ankle oedema and abdominal pain. The autopsy data indicate that Beethoven had cirrhosis of the liver, and probably also renal papillary necrosis, pancreatitis and possibly diabetes mellitus. His lifestyle for at least the final decade of his life indicated that he overindulged in alcohol in the form of wine. Alcohol was by far the most common cause of cirrhosis at that period. Toxicological analysis of his hair showed that the level of lead was elevated. During the eighteenth and early nineteenth centuries, lead was added illegally to inexpensive wines to sweeten and refresh them. These findings strongly suggest that liver failure secondary to alcoholic cirrhosis, associated with terminal spontaneous bacterial peritonitis, was the cause of death. This was complicated in the end stages by renal failure. If the presence of endogenous lead was verified by analysis of Beethoven's skeletal remains, it would suggest that the lead was derived from wine that he drank. Lead poisoning may account for some of his end-of-life symptoms. There is little clinical or autopsy evidence that Beethoven suffered from syphilis.

Austria↗
PubMedDate not supplied

Using vignettes to explore how parents approach end-of-life decision making for terminally ill infants.

With the complexity of technologies in medical centers today, family members are frequently confronted with situations that require decision making on behalf of a loved one. Some researchers have studied the needs of decision makers directly; however, the reality of asking opinions at the bedside of a dying patient makes it a difficult issue to research directly. The vignette method has been used to extrapolate data by asking study participants how they would act under certain circumstances. This vignette-based study explores potential decision-making processes collected from volunteers about how family members might make decisions for a loved one. Ninety-four students were asked to read vignettes as if they were caregivers. Students were randomly assigned to one of three clinical scenarios describing a family member at a critical decision point. The age of the family member, relationship, and medical condition were manipulated in the three otherwise identical scenarios. The results indicated that the ranked responses to the categories were different in the three age-group scenarios. In the group simulating parent decision making for the terminally ill infant, the participants reported "quality of life" and "chance of survival" most frequently as to compared to "pain/comfort" or "family relationships" for older patients. When making decisions in the infant scenario, participants were twice as likely to express religious or spiritual criteria for their decisions and half as likely to express cost concerns. Among the three scenarios, participants simulating family decisions for infants indicated that different caregiving values may apply. They were even more likely than the others to choose mechanical ventilation as an option when the prognosis is extremely poor. All family members making decisions for a loved one, regardless of age or relationship, need supportive assistance from nurses; however, pediatric nurses who develop relationships with parents of terminally ill infants especially need to understand their values in making decisions.

Adult↗
PubMed1993

Oncology nurses' attitudes regarding voluntary, physician-assisted dying for competent, terminally ill patients.

Euthanasia and "voluntary dying" are among the most controversial issues involved in cancer care. The purpose of this descriptive study was to explore oncology nurses' attitudes about physician-assisted death (PAD) for competent, terminally ill adults who request this assistance. Questionnaires were sent to 2,000 randomly selected members of the Oncology Nursing Society. The questionnaires included demographic questions, four vignettes describing patient care situations and possible responses based on beliefs about PAD, and questions that explored awareness of organizations and legislation that promote legalization of PAD. The response rate was 61% (1,210). Findings indicate that oncology nurses hold diverse views regarding the acceptability of PAD. Although many nurses favored PAD, they also expressed a reluctance to administer the medication that would cause death. Given that PAD is an ethical and legal issue in the United States for terminally ill patients, nurses are encouraged to become informed about the concept of PAD and be prepared to actively respond to the policy-making ramifications of the assisted-death movement.

Adult↗
PubMed1989

Teaching third-year medical students how to care for terminally ill patients.

Most medical schools in the United States introduce students to the care of dying patients. In most cases, there is no immediate practical application of the material, and many medical students find it very difficult to interact with a terminally ill person in a clinical situation. The authors describe a successful seven-day course offered annually since 1979 to third-year medical students. The course is an integrated program for teaching the students an effective way to deal with terminal illness, using lectures, audiovisual aids, and group and individual sessions to enhance self-awareness and a practical application of the material in a clinical setting.

Education, Medical, Undergraduate↗
PubMed1998

Oral disease in terminally ill cancer patients with xerostomia.

Xerostomia is common among patients with advanced cancer and is likely to contribute to oral disease. This study determined the prevalence of oral signs and symptoms among a group of 70 terminally ill cancer patients [25 male, 45 female; age range 42-88 (mean 66) years] complaining of oral dryness, and examined the associated oral microflora. Imprint cultures for yeasts, coliforms and staphylococci were collected from the tongue and, in denture wearers, from the plate and denture fitting surface. A swab was collected for culture of herpes simplex virus. 68 patients (97%) complained of oral dryness during the day and 59 patients (84%) complained of oral dryness at night. Oral soreness was reported by 22 patients (31%). 46 patients (66%) had difficulty talking and 36 (51%) reported difficulty eating. Of the 56 denture wearers, 40% complained of denture problems. On examination, 63 (90%) of the patients had clinically dry mouths. Oral mucosal abnormalities were detected in 45 patients (65%), most commonly erythema (20%), coated tongue (20%), atrophic glossitis (17%), angular cheilitis (11%) and pseudomembraneous candidosis (9%). 47 (67%) of the patients carried yeasts, 18 (26%) were carriers of Staphylococcus aureus and 13 (19%) carried coliforms. Herpes simplex virus was isolated from 5 patients, of whom 2 had herpetic stomatitis. Oral complications and abnormalities of the oral microflora can be detected among significant numbers of terminally ill cancer patients with xerostomia.

Adult↗
PubMedDate not supplied

Dehydration in the terminally ill patient.

BACKGROUND: Many healthcare professionals believe that dehydration is painful and uncomfortable for dying patients. There is increasing evidence to support the view that dehydration might aid comfort and reduce stress in the final days of terminal illness. The decision of whether or not to administer artificial hydration intravenously of subcutaneously causes much concern for healthcare professionals. The British Medical Association's 1999 guidance for decision making, Withholding and Withdrawing Life: Prolonging Medical Treatment, states that: '...the emotional and psychological burden on staff involved with withdrawing or withholding life-prolonging treatment should be recognised and adequate support mechanisms need to be available and easily accessible before, during and after decisions have been made. CONCLUSION: Raising awareness of the effects of dehydration in terminally ill patients will lead to a better understanding among staff on the ward. It will help them to further promote the comfort of dying patients and help relatives come to terms with this distressing situation.

Attitude of Health Personnel↗
PubMed2004

Quality of life in hospice patients with terminal illness.

To better understand quality of life (QOL) and its important correlates among patients with terminal illness, a cross-sectional correlational design was used in a study based on Stewart, Teno, Patrick, and Lynn's conceptual model of factors affecting QOL of dying patients and their families. Sixty participants were recruited from two local hospice programs in the midwestern region of the United States. Data were collected at the participants' homes. The participants had an above average QOL. Living with the caregiver, spirituality, pain intensity, physical performance status, and social support as a set explained 38% of the variance in their QOL. Among these five predictors, living with the caregiver, spirituality, and social support statistically were significant predictors of the QOL of these participants. Participants who did not live with their caregivers experienced less pain intensity, perceived higher spirituality, had more social support, and had a significantly better QOL. Important contributions of these findings are discussed.

Aged↗
PubMed1999

How do terminally ill patients at home take their medication?

Compliance with prescribed medication was assessed in 111 terminally ill patients referred to a community palliative care team using semistructured interviews and pill counting. One-hundred-and-six patients were prescribed a total of 597 drugs; of these patients, 64 (60%) were noncompliant. Thirty-five patients (33%) took less medication than prescribed, usually due to experiencing, or anxieties about, adverse events; the commonest drugs involved were analgesics. Seventeen patients (16%) took additional medication, usually purchased over the counter in response to inadequate symptom control or to adverse events from other drugs; the most common preparations were vitamins and analgesics. Twelve patients (11%) both took less medication than prescribed and also purchased medication over the counter. Most patients (90%) had two or more prescribers; patients who saw their general practitioners as their main prescriber were more likely to adhere to their prescribed medication. Patients who omitted and/or reduced their medication were more likely to see the hospital as their main prescriber. Drugs prescribed four times daily were most likely to be omitted and/or reduced.

Adult↗
PubMed1998

[Home care for terminally ill cancer patients in 1997].

In 1997, home care was provided for thirty-seven terminally ill cancer patients, fifteen patients with gastric cancer, nine patients with colorectal cancer, four patients with breast cancer, and nine patients with other miscellaneous cancer. The shortest period of home care was three days, the longest was six hundred seventeen days, and the average was one hundred eight days. Medical treatment at home consisted of dosage of morphine for 30 patients, parenteral nutrition for 30 patients, dosage of steroids for 29 patients, infusion of haloperidol for 8 patients, continuous draining of ascites for 6 patients, and continuous draining of intestinal fluid through nasogastric tube for 3 patients. As of May 31, 1998, 3 patients were alive but 34 patients had died, 31 of them at home. The characteristic trends in this year were reinforcement of the home care system in our hospital, prolongation of mean at-home days, inhalation of nebulized morphine for management of dyspnea, restriction of indication of home infusion therapy and active cooperation with public health center and welfare office.

Adult↗
PubMed2005

Development of Wernicke encephalopathy in a terminally ill cancer patient consuming an adequate diet: a case report and review of the literature.

Malignancy-associated primary thiamine deficiency has been documented in several experimental tumors, clinical case reports, and in patients with fast growing malignancies. We report a terminally ill cancer patient who developed delirium. Close examination of the patient demonstrated that delirium was caused by thiamine deficiency, although she had been consuming an average of 990 cal/day for the past 3 weeks. Malabsorption or consumption by the tumor was considered the mechanism of thiamine deficiency. Early recognition and subsequent treatment resulted in successful palliation of delirium. In terminally ill cancer patients, clinicians must remain aware of the possibility of Wernicke's encephalopathy, when the patients develop unexplained delirium, even if the patient has been consuming adequate amounts of food. Early intervention may correct the symptoms and prevent irreversible brain damage, and the quality of life for the patient may improve.

Adrenal Cortex Neoplasms↗
PubMed1993

Attitudes of general practitioners in Bizkaia, Spain, towards the terminally ill patient.

This paper reports the results of a survey of general practitioners in Biscay which investigated the types of narcotics used in the treatment of chronic malignant pain, the degree of their use and the difficulties encountered both in the use of narcotics and the general care of the terminally ill patient. We found that (1) 50% of the doctors surveyed used narcotics in the treatment of at least 60% of their patients with terminal disease; (2) morphine is the most frequently used narcotic, usually being given orally, and (3) those who completed the questionnaire showed themselves to be highly motivated when treating terminally ill patients. However, they considered that their motivation exceeded their level of competence and, according to the majority, collaboration between the different health services and the formation of interdisciplinary teams would be the best way to facilitate an increase in competence.

Adult↗
PubMed1994

A retrospective study of risk factors of akathisia in terminally ill patients.

Akathisia is a distressing disorder that manifests as a state of restlessness and motor agitation. We aim to highlight the problem of akathisia to the palliative care physician by identifying and quantifying risk factors in the terminally ill. A retrospective case-control study was utilized to investigate risk factors for akathisia. Medical records of cases (N = 100) and controls (N = 365) archived in a computerized database were downloaded and risk factors determined using conditional logistic regression analyses. Exposure to pharmacologically similar drugs, such as haloperidol [odds ratio (OR), 18.4; 95% confidence interval (CI), 8.2-41.4], prochlorperazine (OR, 8.1; 95% CI, 3.0-21.8), and promethazine (OR, 3.3; 95% CI, 1.3-8.0), conferred an increased risk. Other significant variables were exposure to morphine (OR, 5.3; 95% CI, 1.9-14.2), sodium valproate (OR, 2.5; 95% CI, 1.0-6.4), and sodium bicarbonate/tartrate (Ural) (OR, 4.2; 95% CI, 1.2-15.3). Highlighting factors that predispose patients to akathisia emphasizes that this syndrome should not be forgotten when treating the terminally ill. It is recommended that those drugs identified should be judicially used and carefully monitored.

Adult↗
PubMedDate not supplied

Fear of death, death attitudes, and religious conviction in the terminally ill.

The way in which an individual's belief system about death affects fear of death (FOD) has been largely neglected in the thanatology literature. The present study addresses the dimension of certainty or uncertainty with which beliefs about death are held and examines the way in which such attitudes might affect the FOD in dying patients. Twenty terminally ill patients were administered three FOD measures and a death perspective scale which assessed eight death attitudes. FOD among the terminally ill at both the conscious and fantasy level was low. Increased age was associated with declining conscious FOD, independent of life expectancy. Of the eight death perspectives, the attitudes toward death as afterlife-of-reward most directly tap the dimension of certainty or uncertainty. A significant curvilinear relationship emerged between this death perspective and FOD, suggesting that beliefs are a less critical determinant of death fear than is the certainty with which these beliefs are held. The study raises research and clinical issues pertinent to understanding FOD in dying patients.

Adult↗