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PubMed2005

The use of bisphosphonates in palliative treatment of bone metastases in a terminally ill, oncological elderly population.

According to the guidelines of WHO [WHO, 1999. Cancer Pain and Palliative Care Program. Cancer Pain Release, vol. 13], the term terminally ill patient refers to oncological patients whose life expectancy is lower than 90 days, and the index of their physical state (defined as the Karnofsky Index) is below 50. The terminally ill oncological patients are treatable with the palliative cures, representing a treatment system aimed at improving the quality of life (QOL) of both the patient and the family members, decreasing the physical and psychical sufferance of the patient. The present study followed 35 terminally ill oncological patients with bone metastases, at their homes, for the University of Catania. These patients had previously been followed by the Local Sanitary Unit (ASL 3) of Catania, and established a life expectancy not longer than 3 months. Independently from the basic neoplastic disease resulting in the bone metastases, all the patients were treated with sodium clodronate (SC) intravenously, 300 mg every second day, in order to decrease the bone pains. The visual analogue scale (VAS) for pain relief, the autonomy (IADL) and autosufficiency (ADL, Barthel Index) were evaluated after 1, 3, and 6 months of treatment. The results indicate an overall significant improvement both in the pain symptoms and the QOL. Also the compromised autonomy and autosufficiency of this population seemed to be improved, at least as compared to the predicted and expected results at the start of this trial, and also compared to the relevant literature. One can conclude that the i.v. application of 300 mg of SC every other day produced a significant pain reduction and improved the QOL, and helped in maintaining the actual autonomy and autosufficiency. On this basis we suggest the use of this compound in the given type of terminally ill patients.

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PubMed1999

Working with terminally ill older women: can a feminist perspective add new insight and direction?

While sexism and ageism in the health care system have been systematically documented, nowhere is the treatment of aging women more androcentric than in the care for the terminally ill. In fact, a terminally ill older woman is too often disadvantaged by a health care system which excludes her from decision-making and renders her powerless. In response, we propose a feminist approach to health care for terminally ill older women and argue that it is this approach which will not only put knowledge and power into the hands of women, but will change the fundamental ways in which women approach death.

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PubMedDate not supplied

Determinants of hospice home care use among terminally ill cancer patients.

BACKGROUND: Despite the widespread availability of hospice services for more than two decades in the United States, currently many terminally ill cancer patients who may benefit from hospice care do not receive it. PURPOSE: To identify determinants of the use of hospice home care services for terminally ill cancer patients during their final days of life. METHODS: Secondary analysis of data from 127 terminally ill cancer patients who participated in a prospective and exploratory study aimed at identifying determinants of congruence between the preferred and actual place of death. Multivariate logistic regression analysis was conducted to identify determinants of hospice home care use. RESULTS: Sixty-four (50.4%) out of the 127 participants had used hospice home care services before death. Important determinants of hospice home care use included: (a) longer length of survival (odds ratio [OR] 1.02; 95% confidence interval [CI]: 1.01-1.03); (b) perceived greater family ability to achieve preferred place of death (OR: 1.85; 95% CI: 1.30-2.62); (c) home as the realistic preferred place of death (OR: 5.58; 95% CI: 1.95-16.03); (d) being female (OR: 5.37; 95% CI: 1.81-15.95); (e) lower levels of functional dependency (OR: 0.94; 95% CI: 0.89-0.99); and (f) use of emergency care during the final days of life (OR: 4.03; 95% CI: 1.26-12.94). CONCLUSIONS: The results of this study identified several groups of terminally ill cancer patients who were at a disadvantage to use hospice home care, including those without sufficient family resources but who required intensive nursing care. Providing nursing care that enables family care-taking at home may facilitate hospice home care use for patients.

Adult↗
PubMed1999

Use of TPN in terminally ill cancer patients.

Total parenteral nutrition (TPN) is often used as an adjunct to cancer therapy. However, it is increasingly being used in terminally ill cancer patients without clearly defined reasons. To determine the validity of the use of TPN in terminally ill cancer patients, 26 patients with limited life expectancy due to end-stage cancer were given TPN by their physicians, and the validity of its use was evaluated using the criteria of 1) quality of life, and 2) ultimate outcome. Patients were divided into two groups according to the use of TPN. Group I = TPN as adjunct of medical therapy, n = 15 (eight male, seven female), mean age 32 y. Group II = TPN for in-hospital supportive care, n = 11 (two male, nine female), mean age 56 y. Nutritional status on admission, quality of life (assessed by extent of daily activities, pain, and ability to sustain oral intake), and ultimate treatment outcome were determined. Mean weight loss in patients in Group I was 8.6 kg, 11 patients out of 15 were malnourished; mean weight loss in patients in Group II was 21 kg, and all of the 11 patients belonging to this group were malnourished. Two patients of Group I improved their quality of life, while 6 declined and 7 died; in Group II, 3 improved their quality of life, 4 declined, and 4 died. We conclude that when TPN was given either as an adjunct to in-hospital aggressive therapy for cancer or for in-hospital supportive care, quality of life did not improve in the majority of patients; nor did it influence ultimate outcome. These objective data, thus, raise the question of the validity of the use of TPN in terminally ill cancer patients. However, barring the cost factor, it is recognized that subjective reasons for giving TPN to terminally ill cancer patients persist and include compassionate, ethical, religious, or emotional reasons.

Adult↗
PubMedDate not supplied

The occupational therapist and terminal illness: Learning to cope with death.

Working with terminally ill clients is legtimately within the scope of occupational therapy. Yet two students attempting to define and learn a role in this area discovered that few therapists reported they were treating dying people. Findings from a review of the literature and in talking with therapists and dying people suggested that an occupational therapy role in this area was not clearly nor attractively defined. In addition, no suggestions were found to show how one learns such a role. This paper reports the conclusions arrived at by these students and their instructor. Using the occupational performance frame of reference, they propose a unique occupational therapy role for assisting a dying client to relinquish his occupational roles. In addition, functions of listening to, accepting, and understanding the feelings of the dying person, his family, and the staff caring for him are described. The paper concludes with examples of specific experiences for learning this role and functions based upon the premise that people must come to terms with their own feelings about death and dying before they can work effectively with a terminally ill client.

Attitude to Death↗
PubMed2006

Withdrawing implantable defibrillator shock therapy in terminally ill patients.

PURPOSE: The purpose of this study is to review a multidisciplinary strategy used to identify patients with terminal illnesses and initiate withdrawal of implantable cardioverter defibrillator (ICD) shock therapy as part of a comprehensive comfort care approach. With indications for ICDs increasing, more patients are receiving devices. Once protected from an arrhythmic death, these patients may develop other terminal diseases such as cancer or congestive heart failure. It is appropriate to withdraw defibrillator shock therapy when such patients desire only comfort care. METHODS: The charts of ICD patients who had died were reviewed. Two groups emerged: Group 1 (20) included patients whose defibrillator was turned off through the comprehensive comfort care approach. Group 2 (43) included patients whose clinical course was so rapid that the defibrillator was not turned off. Pacing therapy was not withdrawn in either group. RESULTS: Defibrillator discharges, cause of death, and time from ICD discharge to death were compared. Group 2 patients died more acutely than Group 1. Group 1 experienced fewer shocks prior to death when compared to Group 2. Comparing pacemaker dependent and non-dependent patients, there was no difference in the time between therapy discontinuation and death. CONCLUSION: This is the largest study to date to review the characteristics of patients with ICDs and terminal illness. Only one-third of terminally ill patients with ICDs were able to have shock therapy withdrawn as part of a comfort care strategy. These patients experienced fewer shocks in the final days of their illness.

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PubMed2005

What influences decisions around the place of care for terminally ill cancer patients?

AIM: To explore what factors influence decisions around the place of care for terminally ill cancer patients in a rural area in West Highland, Scotland. DESIGN: This was a descriptive, explorative, qualitative study using taped semistructured interviews. SAMPLE: A purposive sample of eight terminally ill cancer patients. RESULTS: The determinants for the desired place of care were organized into three main themes: carer resource and support; past experiences with death; and communication of wishes. The study evidenced that individuals often changed their preferred place of care at the end of life as the need for care increased. Those involved in the study found a therapeutic and emotional benefit by being able to discuss end-of-life care in a safe and secure environment. CONCLUSION: For many, the preference for place of care at the end of life was conditional on how the process of their disease advanced. It was not a clear and positive choice, but it did include the desire to be cared for in a place other than home. Carer availability and ability were influencing factors; however, decisions reflected the patient's perceptions of resources rather than those of the carer, even when the carer was available and able. The challenge to those who work with the terminally ill is to develop effective interventions to facilitate discourses around end-of-life care, and thereafter, where possible, to facilitate those preferences.

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PubMed2006

Uric acid as a prognostic factor for survival time: a prospective cohort study of terminally ill cancer patients.

The aim of this prospective cohort study was to determine whether serum uric acid level is useful as a predictor of survival in terminally ill cancer patients. One hundred eighteen terminally ill cancer patients, including 63 (53.4%) males, were categorized into four groups by serum uric acid levels and followed up until death or to the end of the study. Cox's proportional hazard model was adopted to evaluate the joint effect of some clinicobiological variables on survival. From an initial model containing 51 variables, a final parsimonious model was obtained by means of a stepwise method. Repetitive dispersion analysis was performed for serum uric acid level in 39 subjects for 3 weeks until death. During the study period, 113 (95.76%) subjects expired, and the median survival time was 14 days. In univariate analysis, survival time of the fourth highest group (> or =7.2mg/dL) was significantly shorter than that of the others (hazard ratio (HR)=2.784, P<0.001). After adjustment for low performance status, moderate to severe pain, prolonged prothrombin time, hypocholesterolemia, and high lactate dehydrogenase (LDH) level, high serum uric acid level (> or =7.2mg/dL) was significantly and independently associated with short survival time (HR=2.637, P=0.001). Serum uric acid levels were also significantly increased between the first and the second week before death. These findings suggest that serum uric acid level can be useful in predicting life expectancy in terminally ill cancer patients.

Adult↗
PubMed2006

[Comprehensive nursing care of the terminally ill and the dying patient. Selected symptoms and interventions].

The special care and attention due to terminally ill and dying patients will be demonstrated in this contribution with the help of specifically chosen paradigm cases and examples. The paper focuses on the needs of dying patients and their (nurs ing) relatives during the last days/hours of life (48-72 hours). Noisy, rattling breathing (death-rattle) and dry mouth (xerostomia) will be introduced as selected symptoms and phenomena together with basic stimulation and subcutaneous therapy as corresponding nursing interventions. Especially subcutaneous therapy has been shown to be a simple, non-invasive, and outstandingly effective option for easing symptoms and suffering of terminally ill people. Furthermore, this contribution wants to stimulate the critical reflection of carers within their own organizational structure in order to foster patient focused, competent, and comprehensive therapy, care, and attention of terminally ill and dying patients during their last days of life.

Germany↗
PubMed2000

The role of the psychologist in determining competence for assisted suicide/euthanasia in the terminally ill.

This paper discusses the history of assisted suicide/euthanasia and public attitudes in Canada; discusses depression in the terminally ill and the potential role of the psychologist in the assisted suicide/euthanasia process; and specifically addresses the importance of determining competence in terminally ill patients. One area in which the services of psychologists have not been used to their fullest potential is in the care of the terminally ill, particularly in helping them make end-of-life decisions. It is very important that individuals making end-of-life decisions be used to assessed for mental disorders in order to ensure that they are able to make competent decisions. If assisted suicide and euthanasia were to become legalized, psychologists should be involved in the assessment process in order to determine competency.

Attitude of Health Personnel↗
PubMedDate not supplied

The effects of home nursing care for patients during terminal illness on the bereaved's psychological distress.

BACKGROUND: Although some studies have examined the effects of terminal illness care models such as hospice care on survivor outcomes, no studies could be found that examined whether nursing care affected such outcomes. OBJECTIVE: To determine whether specialized oncology home care services provided to terminally ill patients with lung cancer positively influenced bereavement psychological distress among survivors, compared with other models of care. METHODS: A secondary analysis was performed to test the effects of home nursing care for terminally ill patients on spousal psychological distress during bereavement. Forty-six patient-spousal dyads were randomly assigned to either an oncology home care group (OHC), a standard home care group, or an office care control group. Patient-spousal dyads were entered into the study 2 months after the patient's diagnosis of lung cancer and received follow-up until the patient died. Bereaved spouses continued to receive follow-up for 25 months after the patient's death. RESULTS: Psychological distress was significantly lower initially among spouses of patients that received the OHC intervention compared with the other two groups. Significant mean group differences were found on the subscales of depression and paranoid ideation; marginal group differences were found on the subscales of hostility and psychoticism. There were no significant differences among the groups at 25 months. CONCLUSIONS: These results suggest that the bereaved's psychological distress can be positively influenced depending on how their loved one is cared for during the terminal phase of illness.

Bereavement↗
PubMedDate not supplied

Family-perceived distress from delirium-related symptoms of terminally ill cancer patients.

Delirium is a frequent symptom of terminally ill cancer patients and can cause serious distress to family members. To clarify the degree of emotional distress of family members concerning terminal delirium, a survey of bereaved families was performed. A questionnaire was mailed to 300 bereaved families with a request to rate the frequency and level of their distress for 12 delirium-related symptoms. A total of 195 responses were analyzed (effective response rate=65%). Seventy-four percent and 62% of the family members reported that the patients had symptoms of physical restlessness and mood lability, respectively. Psychotic symptoms, such as hallucinations and delusions, were reported by 35%-37%, and somnolence was reported in 92%. The prevalence of cognitive symptoms (e.g., communication difficulty, memory disturbance) ranged between 50% and 72%. More than two-thirds of the bereaved family members perceived all delirium-related symptoms other than somnolence as distressing or very distressing when they occurred "often" or "very often." For physical restlessness, mood lability, and psychotic symptoms that occurred "sometimes," 27%-36% of the family members had moderate to high levels of distress. The bereaved family members of terminally ill cancer patients experienced high levels of distress from both the agitation and cognitive symptoms of terminal delirium. Multidisciplinary interventions, including the prevention of agitation and the minimization of cognitive impairment, pharmacological or medical treatments, and supportive and psychoeducational approaches for family members, are needed to alleviate family distress.

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PubMed1999

Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients.

BACKGROUND: In addition to medical care, dying patients often need many types of assistance, including help with transportation, nursing care, homemaking services, and personal care. We interviewed terminally ill adults and their care givers in six randomly selected areas of the United States (five metropolitan areas and one rural county) to determine how their needs for assistance were met and the frequency with which they received such assistance from family members and paid and volunteer care givers. METHODS: The patients, whose physicians estimated them to have less than six months to live and who had clinically significant illness other than human immunodeficiency virus infection or the acquired immunodeficiency syndrome, were referred to the study by their physicians. Of the 1131 eligible patients, 988 (87.4 percent) consented to a detailed in-person interview conducted in English, as did 893 of the 915 eligible primary care givers (97.6 percent). RESULTS: Of the 988 terminally ill patients, 59.4 percent were over the age of 65 years, and 51.5 percent were women. The most frequent terminal illness was cancer (in 51.8 percent of the patients), followed by heart disease (18.0 percent) and chronic obstructive pulmonary disease (10.9 percent). Four percent of the patients were in an institution, such as a nursing home, residential hospice, or hospital; the rest were living in a private residence. A need for assistance was reported by 86.8 percent of the patients; they required help with transportation (reported by 62.0 percent), homemaking services (55.2 percent), nursing care (28.7 percent), and personal care (26.0 percent). Of the care givers, 72.1 percent were women. Primary care givers were family members in 96.0 percent of cases; only 4.0 percent were unrelated. Most patients relied completely on family members and friends for assistance. A total of 15.5 percent of patients relied only on paid assistance for more than half of the types of care that they needed. Volunteers (that is, unpaid helpers who were not family members or friends) provided less than 3 percent of all care. CONCLUSIONS: In our survey of terminally ill patients, family members, usually women, provided the majority of assistance with nonmedical care. Although many people received assistance from paid care givers, very few had assistance from volunteers.

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PubMed2003

Caregiving and its impact on families of the terminally ill.

Changes in the health care system have meant that increasing numbers of the terminally ill receive the majority of their care at home. The purpose of this paper was to document patterns of informal and formal care provided to the terminally ill and assess the impact caregiving has on family members. One hundred and fifty-one family caregivers were recruited for interviews from two community-nursing agencies in an urban region of the province of Ontario, Canada. The majority of respondents 119 (79%) were the female spouses of the patient. The numbers of caregivers providing assistance in specific functional activities were: bathing, 133 (88%); mobility, 123 (81%); dressing and undressing, 114 (76%); toileting, 101(67%), and assistance at night 97 (64%). Sixty-two (41%) respondents reported that they had been providing some form of caregiving for over one year. They also reported that physical demands in caregiving increased substantially during the last three months of the care recipient's life. As family caregivers provided more assistance in activities of daily living they were at greater risk of reporting high caregiver burden. The results of this paper identify the types of care provided by family caregivers of the terminally ill and the impact these demands have on the family caregiver.

Activities of Daily Living↗
PubMed1997

Long-Term Spinal Opioid Therapy in Terminally Ill Cancer Pain Patients.

In terminally ill cancer patients with refractory pain, long-term spinal opioid therapy may provide a profound analgesia with minimal side effects. The reversibility of the technique and its efficacy throughout the body and for different types of pain are important advantages. For epidural administration, it is preferable to use lipid soluble opioids (sufentanil). For intrathecal administration, morphine is the best choice. The advantages of intrathecal administration over epidural administration are the need for lower doses because of a more direct administration at the receptor site, the easy positioning of the catheter, and less risk for migration of the catheter. In severe refractory pain which does not respond to spinal opioids, the use of non-opioids (e.g., a local anesthetic or an alpha-2 adrenoreceptor agonist) as coanalgesics may be recommended for improving pain relief. Long-term spinal opioid therapy at home has been made possible by technical and organizational development. In home care, only one physician should be the manager for the patient. Coordination should be optimized among patient, family, general practitioner, oncologist, anesthesiologist, home nurse, technician, and pharmacist.

Journal Article↗
PubMed2004

Major depression, adjustment disorders, and post-traumatic stress disorder in terminally ill cancer patients: associated and predictive factors.

PURPOSE: Few studies have been conducted to elucidate the psychological distress of terminally ill cancer patients. This study attempted to determine the prevalence of adjustment disorders (AD), major depression (MD), and post-traumatic stress disorder (PTSD) among terminally ill cancer patients, to identify factors that contribute to them, and to determine how they change longitudinally. PATIENTS AND METHODS: Consecutive terminally ill cancer patients were recruited. Patients were assessed for psychiatric disorders by structured clinical interview twice: once at the time of their registration with a palliative care unit (baseline), and again at the time of their palliative care unit admission (follow-up). Possible contributed biomedical and psychosocial factors were evaluated. RESULTS: The proportions of patients diagnosed with AD, MD, and PTSD at baseline (n = 209) were 16.3%, 6.7%, and 0% respectively, whereas at follow-up (n = 85), 10.6% were diagnosed with AD and 11.8% with MD. Lower performance status, concern about being a burden to others, and lower satisfaction with social support were significantly associated with AD/MD at baseline. There were changes in the diagnosis of AD and MD in 30.6% of the patients. Only the Hospital Anxiety and Depression Scale at the baseline was significantly predictive of AD/MD at follow-up. CONCLUSION: The factors underlying psychological distress are multifactorial. Early intervention to treat subclinical anxiety and depression may prevent subsequent psychological distress.

Adult↗
PubMed2003

[Opinions of doctors and nurses about appropriate medical treatment for terminally ill geriatric patients].

We investigated the opinions of medical doctors and nursing staff about desirable medical treatment for terminally ill geriatric patients. The purpose of the present study is: 1) to examine the recent opinion of doctors and nurses, 2) to examine discrepancies of opinions between doctors and nurses on treatment for terminal geriatric patients. Doctors and nurses working in long-term care wards in four hospitals were enrolled. They were asked to fill in a questionnaire which asked about desirable medical treatments for a typical bedridden terminally ill geriatric patient. The difference of answers between doctors and nurses were analyzed. The most common opinion of the 18 doctors and 84 nurses were as follows: 1) for the treatment of relapsing pneumonia, they would perform oxygenation, antibiotic injections, and continuous intravenous infusion during the period of discontinuation of enteral nutrition, 2) for the treatment of relapsing urinary tract infection, they would catheterize patients for a brief period and would irrigate the bladder, and would perform antibiotics injection, 3) for chronic anemia, they would perform iron replacement, 4) for decubitus ulcer, they would treat conventionally, and 5) at the final stage just before death, they would avoid special therapy for shock after obtaining informed consent from patient's family. To most questions, the proportion of each answer was almost identical between doctors and nurses; however, there were discrepancies concerning "way of nutrition in patients with relapsing pneumonia" and "irrigation of the urinary bladder" (p = 0.0544 and 0.0531, respectively). We expect that the present study will activate a discussion of what constitutes appropriate medical treatment for terminally ill geriatric patients.

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PubMed2001

Communication Capacity Scale and Agitation Distress Scale to measure the severity of delirium in terminally ill cancer patients: a validation study.

Although valid measurement of the severity of terminal delirium is of great importance in palliative care settings, existing instruments have considerable limitations. In order to quantify patients' communication capacity and agitated behaviour, two new operational observer-rating scales, the Communication Capacity Scale (Communication Scale) and Agitation Distress Scale (Agitation Scale), were validated. Thirty terminally ill cancer patients diagnosed with delirium were evaluated simultaneously by two palliative care physicians blinded to each other's coding using the Communication Scale and Agitation Scale. In addition, the Memorial Delirium Assessment Scale (MDAS), Delirium Rating Scale (DRS) and Sedation Scale were rated by one researcher. Both scales achieved high internal consistency and inter-rater reliability with Cronbach's alpha coefficients of 0.91 and 0.96, and Cohen's kappa values on each item of 0.72-1.00. The principal components analysis resulted in the emergence of only one component for each scale. The total score on the Communication Scale was highly associated with that of the MDAS (rho = 0.78), Sedation Scale (rho = 0.86), and cognitive items from the MDAS and DRS (rho = 0.83). The whole score on the Agitation Scale was significantly correlated with that of the DRS (rho = 0.61) and agitation items from the MDAS and DRS (rho = 0.61). In conclusion, the Communication Scale and Agitation Scale have acceptable reliability and validity to quantify patients' communication capacity and agitation symptoms of terminally ill cancer patients with delirium.

Adult↗