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PubMed2006

Hopelessness at the end of life: the utility of the hopelessness scale with terminally ill cancer patients.

OBJECTIVES: We sought to investigate the utility of the Beck Hopelessness Scale (HS) in a sample of terminally ill cancer patients by examining the scale properties. Moreover, we sought to identify and remove potentially problematic items in order to ascertain a "purer" index of hopelessness for this population. DESIGN: A cross-sectional study of 200 hospice inpatients with a life expectancy of less than 6 months. The HS, as well as several other distress measures, were administered to patients at bedside by trained clinicians. METHODS: An item analysis of the HS was conducted, looking specifically at item endorsement and item-total correlations. Three abbreviated versions (3-item 7-item, 13-item) were developed based on certain denoted item-total correlation cut-offs. Reliability and validity of the original 20-item HS was then compared to that of the newly developed abbreviated version. RESULTS: All scales were found to be reliable and valid measures of hopelessness. The three abbreviated versions were more highly correlated with the distress measures than the original version, and the 7-item and 13-item subscales outperformed the original HS in the prediction of suicidal ideation and desire for hastened death. CONCLUSION: The data suggest that the HS may be improved, when applied to a terminally ill sample, by the elimination of problematic items. The development of a shorter, purer measure of hopelessness for this population is crucial given the need to reduce the burden placed on those who participate in end-of-life studies, and the important role of hopelessness in the prediction of suicide and desire for hastened death.

Adult↗
PubMed2003

Family experience caring for terminally ill patients with cancer in Hong Kong.

In this study, 24 family caregivers of terminally ill patients participated in in-depth interviews regarding their experiences of giving care. The data were analyzed using grounded theory qualitative method. Commitment emerged as the precondition of the caregiving process. The caregivers did not perceive the work of caring as a burden. Rather, they felt that despite any personal hardships, what they were doing was important to their loved ones and therefore meaningful to them as caregivers. The components of commitment can be described as relational commitment, the act of showing love, and determination. The process of caregiving includes four phases: 1) holding onto hope for a miracle, 2) taking care, 3) preparing for death, and 4) adjusting to another phase of life. A patient-caregiver relationship, Confucian concepts of yi (appropriateness or rightness), and filial duty are reflected in the process of caregiving. Consequences of the process include finding meaning in life and peace of heart and mind. The emotional aspect of the caregiving experience can be described as an intense emotional experience filled with feelings of hope and hopelessness, guilt, fear, and regret. As a result of the caregiving experience, most participants found they have had a change of worldviews and treasure their lives. Findings show a significant need for interventions at each phase of the caregiving process designed to provide effective and culturally sensitive support and affirmation to family members as they care for their loved ones with terminal illnesses.

Adaptation, Psychological↗
PubMed2003

Quality of life while dying: a qualitative study of terminally ill older men.

OBJECTIVES: To characterize the experience of quality of life while dying from the perspective of terminally ill men. DESIGN: Descriptive study involving semistructured interviews. SETTING: Patients attending clinics at two university-affiliated medical centers were interviewed in a private conference room or in their homes. PARTICIPANTS: Twenty-six men identified by their physicians as having terminal heart disease or cancer. Eligible participants acknowledged that they had serious illness. MEASUREMENTS: The interview contained open-ended questions such as: "What are the most important things in your life right now?" The interview also contained closed-ended questions about symptom intensity, presence of depressed mood, and other items related to overall quality of life. The open-ended questions were tape-recorded, transcribed, and analyzed using grounded theory methods. The closed-ended questions were analyzed using descriptive statistics. RESULTS: Participants believed that death was near. Participants saw engaging in hobbies and other enjoyable activities as an alternative to moving into the final stage of illness, in which they saw themselves as actively dying. They admitted to occasionally ignoring prescribed diets; these actions improved their overall quality of life but worsened symptoms. New symptoms brought concerns about progression to active dying. They anticipated what their dying would be like and how it would affect others. Participants believed that their actions in the present could improve the quality of their dying and lessen the burden of their deaths on others. Many participants therefore were preparing for death by engaging in such tasks as putting their finances in order and planning their funerals, to relieve anticipated burden on loved ones. CONCLUSION: To help terminally ill patients plan for the end of life, clinicians are encouraged to become familiar with their patients' experiences of living with terminal illness, to identify each patient's unique priorities, and to incorporate that information into care plans aimed at maximizing quality of life at the end of life.

Aged↗
PubMedDate not supplied

Enteral and parenteral nutrition in terminally ill cancer patients: a review of the literature.

Many terminally ill patients who are able to eat appear to be eating less than they should, losing weight, and becoming malnourished, and many others develop difficulties with eating. These symptoms and signs are usually a marker of advanced cancer, rather than the cause of decreasing functional status, and providing supplemental nutrition rarely changes the course of the disease. This article reviews evidence on issues relevant to enteral and parenteral nutrition in patients with advanced cancer, including benefits, risks, and discomforts; how these types of nutrition are used and perceived, and how decisions are made; and how decision-making might be improved.

Activities of Daily Living↗
PubMedDate not supplied

Bishops' response to Act on Rights of Terminally Ill.

In August 1985 the National Conference of Commissioners on Uniform State Laws drafted a document entitled The Uniform Rights of the Terminally Ill Act, which it recommended for enactment by all U.S. states. The act attempts to set uniform, clear guidelines for advance directives, or living wills--written declarations made by a patient that are used to guide treatment decisions should the patient become incompetent and terminally ill. The act limits the scope of an advance directive to the withdrawal or withholding of "life-sustaining treatment," which is "any medical procedure or intervention that when administered to a qualified patient will serve only to prolong the process of dying." Qualified patients are those with a terminal condition, which is "an incurable or irreversible condition that without the administration of life-sustaining treatment will, in the opinion of the attending physician, result in death within a relatively short time." The National Conference of Catholic Bishops (NCCB) Committee for Pro-Life Activities responded to the act in July 1986. The NCCB wishes to narrow the act's scope to apply only to patients in the "final stage of a terminal condition." Other specific concerns are the withdrawal of artificial nutrition and hydration, the need for communication with the family in making decisions, and the protection of an unborn child's life when the mother fulfills the conditions of the act and her living will stipulates a desire for withdrawal of life-sustaining treatment.(ABSTRACT TRUNCATED AT 250 WORDS)

Catholicism↗
PubMed2004

Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients.

The present study examined the information needs of family caregivers of terminally ill cancer patients. Data were obtained by a structured interview from 66 Japanese caregivers of cancer patients institutionalized in a palliative care unit. Needs for disease-related information (the disease, treatment and prognosis) and care-related information (the care for the patient and family members) were investigated, and demographic and situational characteristics related to individual information needs were assessed. More than 60% of family caregivers wanted disease-related information, and approximately half of these wanted patient and family care-related information. These information needs had significant correlations with the family caregiver's age and with such patient-dependent situational variables as time since diagnosis, care site before enrolling in a palliative care unit, and presence or absence of other family caregivers. The results may help health care professionals to better inform terminally ill cancer patients and their family caregivers.

Activities of Daily Living↗
PubMed2005

Sedation for terminally ill patients with cancer with uncontrollable physical distress.

BACKGROUND: Relief of distressful symptoms in terminally ill patients with cancer is of prime importance. Use of sedation to accomplish this has been the focus of recent medical studies in countries other than Japan. We investigated the influence on consciousness of sedative drugs in a Japanese hospice. DESIGN AND SUBJECTS: We defined sedation as medical procedure to decrease level of consciousness in order to relieve severe physical distress refractory to standard interventions. We excluded increases in doses of morphine or other analgesic drugs resulting in secondary somnolence from the present study. We reviewed medical records of patients receiving sedation among 124 consecutive patients admitted to our palliative care unit between January and December in 1999. RESULTS: The 63 patients who received sedation (50.3%) died an average of 3.4 days after its initiation. Major symptoms requiring sedation were dyspnea, general malaise/restlessness, pain, agitation, and nausea/vomiting. The Palliative Performance Status (PPS) just before sedation was 20 or less in 83% of patients. Drugs administered for sedation were midazolam, haloperidol, scopolamine hydrobromide, and chlorpromazine. During the few days before death, sedated patients were significantly more drowsy and less responsive than that in those receiving non-sedative treatment. CONCLUSIONS: Our data suggest the effectiveness of sedation in relieving severe, refractory physical symptoms in terminally ill Japanese patients with cancer. Further investigation to confirm safety and effectiveness of sedation in this context is warranted.

Adult↗
PubMed2002

On the Edge of Life, I: Assessment of, Reaction to, and Management of the Terminally Ill Recorded in an Intensive Care Unit Journal.

BACKGROUND: In a general hospital, few clinical settings match the intensity of the intensive care unit (ICU) experience. Clinical rotations in ICUs elicit and emphasize the struggles house officers face on a daily basis throughout their training. METHOD: These struggles were recorded by hundreds of residents in a journal maintained in the Massachusetts General Hospital's Medical ICU for the past 20 years. We systematically reviewed these unsolicited entries to define and to illustrate how house officers respond to caring for terminally ill patients. The 3 overarching topics that surfaced repeatedly were assessment of terminally ill patients, reaction to their prognosis, and management of their disease or their eventual demise. RESULTS: House officers record affective reactions and cognitive assessments to cope with the stress and dysfunction associated with the care of the critically ill and to facilitate their management of these patients. Journal entries by residents reveal a deep concern for the welfare of their patients, conflict about the technological advances and limitations of the system, and reflection on how involved physicians should become with their patients. CONCLUSION: House officer journal entries reflect a combination of newly gained medical knowledge and coping strategies in managing terminally ill patients. House officers also demonstrate a deep concern for the welfare of their patients. Insight from years of reflection from past house officers can help prepare trainees and residency programs for the breadth and intensity of the ICU experience and for work in clinical practice settings that follow completion of training.

Journal Article↗
PubMedDate not supplied

Congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan.

BACKGROUND: Over the last 40 years, studies have shown cultural differences in attitudes toward truth telling at the end-of-life. Nevertheless, the argument that cancer patients from an Asian culture have different preferences about information disclosure that necessitate significantly modifying information disclosure practices has not been validated by direct investigation from patients' points of view. METHODS: Six hundred seventeen dyads of patient-designated family caregivers across 21 hospitals throughout Taiwan were surveyed and interviewed by a semistructured interview guide. Percentage of agreement, kappa coefficients, McNemar tests, and paired t-tests were conducted to examine the extent of congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between the dyads. RESULTS: There were substantial discrepancies in the knowledge and experiences of being informed about the diagnosis and prognosis between Taiwanese terminally-ill cancer patients and their family caregivers (kappa values ranged from 0.08 to 0.44). Cancer patients strongly proclaimed their superior rights to be informed about their disease over their family and preferred their physicians to inform themselves before releasing any information to their family caregivers. CONCLUSION: The arguments that cancer patients from an Asian culture (i.e., Chinese/Taiwanese culture) have different preferences regarding being informed of their diagnosis and prognosis and that family members have legitimate superior power in decision making could not be supported by data from this group of terminally-ill cancer patients. Physicians need to respect patients' preferences rather than routinely taking the family's opinions into consideration first in the event of disagreement. Equipped with adequate information, terminally-ill cancer patients from Asia may have better opportunities to make end-of-life care decisions that are in accord with their wishes.

Adult↗
PubMed2005

Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study.

GOALS OF WORK: Discussing end-of-life issues is of key importance to terminally ill cancer patients and their families, and a challenging topic for both health professionals and patients/carers. There is a lack of research evidence in the literature to guide clinical practice. The objective of this study was to explore the optimal content and phrasing of information when discussing the dying process and end-of-life issues with terminally ill cancer patients and their carers. SUBJECTS AND METHODS: We conducted focus groups and individual interviews with 19 palliative care patients and 24 carers from three palliative care services in Sydney, and 22 palliative care health professionals from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/or individual interviews were conducted until no additional topics were raised. Participants' narratives were analysed using qualitative methodology. MAIN RESULTS: Distinct content areas emerged for discussing end-of-life issues: treatment decisions at the end-of-life; potential future symptoms; preferences for place of death; the process of dying; what needs to be done immediately after death; and existential issues. When discussing the process of dying participants recommended: exploring the persons' fears about dying and dispelling myths; describing the final days and the likely unconscious period; and the reduced need for food and fluids. Many participants identified the dilemma regarding whether to discuss potential complications around the time of death. CONCLUSIONS: This paper provides strategies, words and phrases which may inform discussions about the process of dying and end-of-life issues. Further research is needed to determine the generalizability of these findings.

Adult↗
PubMed1994

[The importance of pain control with morphine for terminally ill patient care for at home].

From April 1987 to June 1994, 81 patients of terminally ill had been care at home. In these home care, 38 patients received pain control with morphine. In 29 patients, pain control had been started before home care but in 9 patients pain control had been started under home care. Routes of morphine administration were oral in 24 cases and rectal in 14 cases. In cases of oral routes, finally 2 cases converted to rectal routes and 2 cases converted to subcutaneous routes. Duration of treatment were from 2 days to 741 days (average 72 days). Dosage of morphine were 7.5 mg to 480 mg (average 116 mg). Two patients lived but 24 patients died at home and 12 patients died at hospital. We concluded that palliative care especially pain control with morphine was very important care for patients of terminally ill who wanted care at home and ultimately die at home. We had to make ourself master of method pain control with morphine.

Administration, Oral↗
PubMed1987

Law, medicine, and the terminally ill: humanizing the approach to risk management.

In advising health care providers about care of the terminally ill in hospitals, risk managers generally take a legally conservative, narrow, risk avoidance approach. This orientation is generally unnecessary legally, since the legal risks in this context are exaggerated, and often lead to suboptimum medical treatment. A more humanistic approach to risk management should be taken where the terminally ill are involved.

Decision Making↗
PubMed1999

A survey of antidepressant prescribing in the terminally ill.

Depression is a symptom in a quarter of patients admitted to a palliative care unit, but little is known of how depression in terminally ill patients is treated. We reviewed 1046 consecutive patient admissions, of whom 106 (10%) were prescribed antidepressant medication while under the care of a palliative care team. Of these patients, 21 were prescribed antidepressants when under the care of the home care team, but 80 patients (76%) were started on medication during the final 2 weeks of life. There was consequently insufficient time for the medication to have any therapeutic effect. Seventeen patients were discharged home on antidepressant medication. Three patients were referred for a psychiatric assessment. Patients prescribed antidepressants were significantly younger (P = 0.002) than those who were not. There were no prescriptions for psychostimulants. Although the numbers of patients prescribed antidepressant medication were low in all disease groups, it was notable that patients with breast cancer were prescribed antidepressant medication more frequently than any other patient group. We conclude that there appears to be a need for a coordinated approach to both the assessment and the treatment of depression in terminally ill patients.

Antidepressive Agents↗
PubMed1991

Feeding the terminally ill: dietitians' attitudes and beliefs.

Medical, legal, and bioethical discussions have focused on withholding or withdrawing nourishment from adults who are terminally ill or in persistent vegetative states, yet few discussions have considered the dietitian's role. In June 1990, the Supreme Court upheld an individual's right to refuse life-prolonging procedures, provided those wishes had been clearly documented. This decision, and The American Dietetic Association's 1987 guidelines for feeding the terminally ill, may enable dietitians to evaluate complicated situations regarding feeding and nonfeeding of patients. A survey sent to 590 registered dietitians in The American Dietetic Association's Nutrition Support dietetic practice group resulted in a 42% (n = 250) response rate. In general, dietitians were more willing to discontinue total parenteral nutrition than to discontinue enteral, noninvasive enteral, or oral feedings. They thought that feeding could be discontinued if it causes pain or worsens the condition, if death is imminent, or if the patient has requested that feeding be stopped. University courses and continuing education programs on the ethics and legalities of feeding terminally or critically ill adults will enable dietitians to take active roles in the decision-making process and to promote awareness of relevant issues with patients and families.

Analysis of Variance↗
PubMed1986

Is it normal for terminally ill patients to desire death?

Among 44 terminally ill patients, the majority (N = 34) had never wished death to come early. Of the remainder, three were or had been suicidal and seven more had desired early death. All 10 patients who had desired death were found to be suffering from clinical depressive illness. The methodologic difficulties encountered by the authors were the lack of a brief, efficient interview schedule suitable for debilitated patients and criteria for depressive disorder that do not depend on suicidal thoughts or on symptoms that can also be caused by physical disease.

Adult↗
PubMed2005

The development and initial validation of the Terminally Ill Grief or Depression Scale (TIGDS).

Patients often experience 'preparatory-grief' as they cope with the dying process. Some may be depressed. The Terminally Ill Grief or Depression Scale (TIGDS), comprising grief and depression sub-scales, is a new self-report measure designed to differentiate between preparatory-grief and depression in adult inpatients. The initial 100-item inventory was assembled based on literature review, interviews with clinicians and dying patients and then shortened to 42 items based on consensus expert opinion. Validity and reliability were tested in a sample of 55 terminally ill adults. The consensus clinical opinion was used as the gold standard to differentiate between preparatory grief and depression. The intra-class correlation coefficient was high (it was calculated to estimate the test-retest reliability for the 47 patients who had completed the TIGDS twice--retest was administered 2 to 7 days after the initial test), ranging from 0.86 (grief) to 0.97 (depression). The validity of TIGDS was assessed using a receiver operating characteristic curve analysis, comparing the first test with the clinical criterion. The first and only variable and cut-point was the depression score (chi-square = 18.4, p < 0.001, cut point = 3). The sensitivity of the TIGDS was 0.727 and specificity was 0.886 for the depression = 3 cutoff score. The construct validity of the TIGDS was tested by comparing with the Hospital Anxiety and Depression Scale (HADS). The TIGDS depression subscale showed strong convergent validity and the TIGDS grief subscale showed strong discriminant validity with the HADS total score.

Aged↗
PubMedDate not supplied

Patient requests for euthanasia and assisted suicide in terminal illness. The role of the psychiatrist.

Psychosocial assessment and treatment are critical elements of care for terminally ill patients who desire hastened death. Most patients, in saying that they want to die, are asking for assistance in living--for help in dealing with depression, anxiety about the future, grief, lack of control, dependence, physical suffering, and spiritual despair. In this article, the authors review current understandings of the psychiatric aspects of requests by terminally ill patients for assisted suicide and euthanasia; describe an approach to the common problems of physical, psychological, social, and spiritual suffering encountered in managing dying patients; and elaborate the functions of the psychiatrist in addressing these problems.

Adaptation, Psychological↗