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PubMed1994

Changing patterns of terminal care management in an intensive care unit.

OBJECTIVE: To empirically describe changes in terminal care management behavior over time with the advent of natural death acts and public dialogue and institutional policy regarding terminal care. DESIGN: Retrospective analysis of medical decision-making and outcome was performed in a cohort of 237 intensive care unit (ICU) patients who received a do-not-resuscitate decision. SETTING: Medical ICU in a tertiary care center. PATIENTS: The cohort of 237 consecutive patients who received a terminal care decision in the ICU, i.e., a do-not-resuscitate decision with or without additional limitation of care, represented 9.3% of 2,185 patients admitted to the ICU over a 4-yr period. Brain-dead patients were excluded from the cohort. INTERVENTIONS: Implementation of hospital-wide policies on do-not-resuscitate decisions and discontinuation of life-prolonging procedures in 1986. MEASUREMENTS AND MAIN RESULTS: A change in frequency and nature of terminal care decisions occurred. By 1988, do-not-resuscitate decisions occurred twice as often as in 1984 (p = .016) compared with ICU deaths. Formal terminal wean decisions, i.e., additional limitation or withdrawal of care, occurred more frequently after 1985 (p = .027). The hospital mortality rate for the do-not-resuscitate cohort was 96.4% (226/237). The diagnosis of cardiac arrest was correlated with subsequent terminal care decisions (p = .0005, r2 = .08). Age of >56 yrs was increasingly correlated with probability of a terminal care decision (p < .0001, r2 = .05). White women received withdrawal of care most frequently, followed by white men, African American men, and African American women. Outcomes analysis indicated that after a do-not-resuscitate decision, most nonsurvivors died within 48 hrs. Eleven patients without additional limitation or withdrawal of care survived to hospital discharge (11/237 [4.6%]). No patient survived a terminal wean. CONCLUSIONS: There is now an increasing probability that impending death will be acknowledged by a formal terminal care decision. Such decisions may become even more frequent with the dialogue generated by the Patient Self Determination Act and the advent of decisions based on physiologic futility.

Adolescent↗
PubMed2000

Impact of individual and market factors on the timing of initiation of hospice terminal care.

CONTEXT: Hospice terminal care is now used by 10% to 15% of elderly Americans at variable points before their deaths. OBJECTIVE: By examining the duration of patient survival after enrollment in hospice care, we sought to identify individual and market factors associated with the timing of hospice use. DESIGN: We linked Medicare claims, census information, and Area Resource File data to form a national cohort of 151,410 hospice patients admitted in 1993 and followed up until late 1996. We examined this cohort with Cox regression and other means. MAIN OUTCOME MEASURE: The primary outcome measure was survival after hospice enrollment. RESULTS: The patients had a mean +/- SD age of 79.0 +/- 7.4 years; 10.2% were nonwhite; 51.4% were female; and 71.3% had cancer. Median survival after hospice enrollment was 30 days (interquartile range, 10-86 days). After adjustment for measured patient, provider, and market factors, several variables were associated with relatively earlier hospice enrollment, farther from death. Compared with complementary groups, nonwhites were enrolled in hospice 4 days earlier; women, 5 days earlier; older people, 1 day earlier; and those with substance abuse, psychiatric disease, or dementia, each 3 days earlier. After adjustment, income and education were not associated with the timing of enrollment. Patients residing in markets with more hospital beds, greater hospice capacity, or a higher proportion of generalists were enrolled earlier. CONCLUSIONS: Even after adjustment for certain clinical attributes, individual social factors and local market factors were associated with survival after hospice enrollment. Certain socially disadvantaged groups were enrolled earlier, as were those residing in areas with more medical institutions. The decision to enroll patients in hospice may depend on both nonclinical and clinical factors.

Aged↗
PubMed2001

Terminal care in the home--the general practice perspective.

A postal survey of 200 General Practitioners in south Dublin was undertaken. The aim was to elicit information about the problems experienced by GPs when caring for terminally ill cancer patients at home, and about their perceived needs for both further training and support services. All respondents experienced problems at least occasionally with control of pain and other symptoms. 25% of GPs surveyed frequently experienced difficulty with access to hospice in-patient beds, and with inadequate home support services. Overall, satisfaction with specialist Palliative Care Services was high. The majority of GPs felt that they would benefit from further education in Palliative Medicine. They also nominated ways to help them improve care of terminally ill patients at home including further training in pain control and symptom relief, more general and specialist nursing support, and more specialist medical support in the community.

Family Practice↗
PubMed1994

Terminal care: improving teamwork in primary care using Significant Event Analysis.

Significant Event Analysis can be used to improve the effectiveness of a Primary Health Care Team caring for terminally ill patients. A method of doing this is described in detail. Positive team qualities were confirmed and enhanced. Significant areas for improvement were identified: insufficient information had been given to some key workers, changes in medication had been poorly planned, continuity of care, and emotional and professional support of team members were inadequate. A strategy for change was developed and implemented. Performance was reviewed a year later. It was found that the Significant Event Analysis had caused changes in team practices, and was valid and reliable enough to be used as a tool for improving teamwork in primary care in future.

Humans↗
PubMed1983

Goal-setting in terminal care: a method of recording treatment aims and priorities.

Although hospices are often said to provide a higher standard of care to terminally ill patients than conventional health care facilities, little empirical investigation has been conducted to test such statements. One aspect of the care process for which hospices are often praised is the attention paid to social and emotional problems concerning the patient, as well as more directly clinical matters. Often these goals are not explicitly stated. This paper investigates a method for systematically documenting the goals set by a multidisciplinary group of staff for the patients under their care. The study was conducted in a National Health Service (NHS) terminal cancer care unit, the staff of which were interested in setting clear, explicit objectives for their patients.

Documentation↗
PubMed2003

[Terminal care for handicapped newborns and grief care for their families].

Terminal care for the handicapped newborns and the grief care for their families have recently emerged as a medical problem. Questionaires to 13 parents who lost their children showed that they were unsatisfied with the care from doctors and nurses before and after the child's death. Medical approach to grief care includes changes in the quality of medicine for handicapped newborns. A system should be created to improve the relationship between the NICU pediatricians/nurses and the staffs engaged in early intervention prior to the newborns' death, which in turn strengthen the ties with a network supporting the families who have lost their newborns.

Child, Preschool↗
PubMed2005

Attitudes of Danish doctors and nurses to palliative and terminal care.

BACKGROUND: The WHO definitions of palliative care have been adopted in Denmark and implemented in The National Guidelines from 1999, but service developments have been very slow and not according to the recommendations. Attitudes to palliative care of Danish doctors and nurses may in part account for this. OBJECTIVE: To assess the attitudes to issues related to palliative care of doctors and nurses in a Danish county hospital and the related primary care services. DESIGN: Cross-sectional survey using a mailed, self-administered questionnaire answered anonymously. PARTICIPANTS: Nurses and doctors employed in a county hospital in Denmark, homecare nurses and general practitioners from the related primary care services. OUTCOME MEASURES: The responses from the groups were compared by chi2 statistics (where ordinal variables with chi2 for trend). Data were analysed using SPSS 10.0. RESULTS: 347 responded, response rate 76%. Eighty-one per cent of all respondents were currently caring for terminally ill patient(s), 94% had done so within the last six months. Hospital doctors see more terminally ill patients than GPs (P = 0.002). Comparison of doctors (both hospital and GPs) with nurses showed that nurses were more likely to definitely agree that palliative/terminal care was a rewarding part of their work (61% 'definitely agree' versus 30%), and they were less likely to prefer to leave care of these patients to others (4% 'definitely/probably agree' versus 9%). Nurses reflected more on existential matters (80% 'definitely/probably agree' versus 63%) and were more likely to agree that dealing with a dying patient made them aware of their own feelings regarding death (97% 'definitely/probably agree' versus 80%). Only 7% of all respondents reported 'being an active member of a religious community'. Ninety-two per cent of all respondents agreed that doctors play a key role in reducing the suffering of dying patients, but 59% of nurses versus 9% of doctors 'definitely/probably agree' that 'it is primarily the task of nurses to deal with patients reactions to death'. There were significant differences between hospital doctors and GPs, with the former less likely to agree that palliative and terminal illness is rewarding, more likely to leave care of dying patients to others, and more likely to 'probably' or 'definitely agree' that it is more satisfying to work with patients who will improve. Home care nurses reflected more on existential matters than their hospital colleagues, and were more likely to 'definitely agree' that palliative/terminal care is rewarding. Differences between groups seemed to be due to profession (doctor versus nurse) and setting (hospital versus community) rather than age or gender. CONCLUSION: These findings suggest that in Denmark nurses demonstrate more positive attitudes to the care of palliative/terminally ill patients than doctors, and that attitudes amongst doctors and nurses working in the community are more positive than those of the colleagues in hospitals. There is currently little education in the principles and practice of palliative care in Denmark. These findings will inform the development of appropriate palliative care education for doctors and nurses working both in the hospital and in the community in Denmark. They also raise the possibility that part of the inertia in the development of palliative care in Denmark is related to the lack of education and, in particular, to the need of support for doctors and nurses providing terminal care so they are enabled to be more reflective on the care they currently provide. There is evidence that education in palliative care can change health professionals' attitudes to palliative and terminal care, and this now needs to be investigated in Denmark.

Adult↗
PubMed1994

[Long-term pain control in terminal care with home hospice care].

Ideal pain control in terminal care at home is the usage of oral or rectal administration of analgesics. If these methods of administration cannot manage pain sufficiently, muscular or intravenous injection of analgesics will be necessary. This is the report of a 66-years-old female who had bone metastasis of uterine cervical carcinoma and gait disorder, and had received chemotherapy along with radiotherapy. At her third admission to our hospital, the total radiation done nearly reached the maximum level. We, therefore, administered morphine sulfate (MS contin) for pain control but it induced strong side effects. Therapy was then changed to continuous infusion of morphine hydrochloride using a Baxter infusor. As a result, pain relief was achieved without inducing side effects, and the patient was able to return to care at home. At that time, the patient's remaining life was expected to return to be about 6 months. However, in fact, she was able to survive for 823 days since then, and 637 days (77.4%) of that time was spent at home. This is considered as terminal care performed mainly at home, with subsidiary care at the hospital. The most important factor which contributed to the success of this care was the pain control by an epidural block infusor. In order to realize worth-while care for patients, it is important to offer various treatment programs which can satisfy the needs of patients and their family, and pain control will be one of the most important factors for cancer patients who wish to spend their limited time with their family.

Aged↗
PubMed1999

Older persons' preferences for site of terminal care.

BACKGROUND: Little is known about patients' preferences for site of terminal care. OBJECTIVE: To describe older persons' preferences for home or hospital as the site of terminal care and to explore potential reasons for their preferences. DESIGN: Cross-sectional quantitative and qualitative interviews. SETTING: Participants' homes. PATIENTS: Community-dwelling persons 65 years of age or older who were recently hospitalized with congestive heart failure, chronic obstructive pulmonary disease, or pneumonia and were not selected according to life expectancy; 246 patients participated in quantitative interviews and 29 participated in qualitative interviews. MEASUREMENTS: Preference for site of terminal care and the reasons for that preference. RESULTS: In quantitative interviews, 118 patients (48%) preferred terminal care in the hospital, 106 (43%) preferred home, and 22 (9%) did not know. One third changed their preference when asked about their preference in the event of a nonterminal illness. Reasons for preference identified during qualitative interviews included the desire to be with family members and concerns about burden to family members and their ability to provide necessary care. Concern about long-term care needs resulted in preference for a nursing home when choice was not constrained to home and hospital. CONCLUSIONS: Preference for home as the site of care for terminal illness exceeds existing practice. However, the current debate about home versus hospital as the ideal site for end-of-life care may ignore an important issue to older persons--namely, the care of disabilities that precede death.

Aged↗
PubMedDate not supplied

Terminal care preferences: hospice placement and severity of disease.

National Hospice Study data for 1981-82 were used to predict the location of care for terminal cancer patients. Sites of care were conventional care in hospitals, hospital-based hospice care, and hospice care in the home. Subjects were terminal cancer patients with a prognosis of less than 6 months of life who were attended by a primary concerned person. There were 1,732 patients 18-99 years old-293 conventional care, 612 hospital-based hospice care, and 827 hospice home care patients. Data sources were the patient, the primary concerned person, the family, and the medical record. Data were obtained at initial interview for the study, 1-week followup, reassessment every 2 weeks, and bereavement interviews. Information was grouped in the following categories: patient functional status, patient psychological outlook, symptomatology, medical condition, and characteristics of the primary concerned person and family. Conclusions were reached by univariate and multivariate analysis. First, a progression of functional disability was found to exist among care sites, from hospice home care for the least disabled to hospital-based hospice care to conventional care for patients with the greatest disabilities. The location of care was best explained by the patient's functional capacity. Second, the location of care was found to be poorly explained by extent of organ involvement or specific symptoms. Third, the primary concerned persons of patients under hospice home care experienced more stress but reacted no differently when compared with primary concerned persons at other care sites. Fourth, patients under hospice home care survived the longest and reported greater family closeness than other care groups.

Activities of Daily Living↗
PubMed1979

Comparison of places and policies for terminal care.

Patients receiving different types of adequate care for fatal neoplasms were compared by an assessment of their mood and opinions. 78% had spoken of dying, and, although 56% had some unhappiness and anxiety, many were not distressed. Most aspects of care were approved of with no consistant difference in ratings between acute hospital wards and a Foundation Home. Patients were least depressed and anxious at a hospice and preferred the more frank communication available there. Inpatients were slightly less troubled than outpatients who nevertheless praised this management.

Adult↗
PubMed2002

As individual as death itself: a focus group study of terminal care in nursing homes.

One in four Americans who reach the age of 65 will die in a nursing home, yet little research exists to define the end of life care needs of this population. We used focus groups with experienced nursing home staff and physicians to: (1) define a good death in a nursing home and (2) describe factors that promote or prevent good care for the dying in this setting. We audiotaped 11 focus groups with 77 participants. Discussions were structured around 3 questions: "How does someone die in the nursing home?" "What makes the difference between a good death and a bad death?," and "What can aides, nurses, or physicians do to help ensure that when someone dies it is a good death?" Participants described lack of training, regulatory emphasis on rehabilitation, and a resource-poor setting as important barriers to high quality care of the dying in nursing homes. They affirmed the value of their experience and personal relationships with residents as the basis for good care. Three major themes emerged to define a good death in a nursing home: highly individualized care based on continuity relationships with caregivers, effective teamwork by staff, physicians and family, and comprehensive advance care planning that addresses prognosis, emotional preparation, and appropriate use of medical treatments. The significance of these themes may be tested in the design of interventions to improve care of the dying in long-term care.

Aged↗