To examine (1) advanced congestive heart failure (CHF) patients' estimates of their longevity and changes in these estimates over time; (2) clinical, functional, and psychological adjustment correlates of these longevity estimates; and (3) correspondence of changes in longevity and changes in multiple dimensions of spirituality over time.

Longitudinal questionnaire-based study of 111 patients diagnosed with severe CHF assessed at two time points separated by 6 months.

Nearly half of the participants estimated their longevity as at least 5–10 years, and there was very little change in estimates across the assessment periods. Longevity estimates were minimally related to clinical or functional indicators, but longer estimates were related to fewer depressive symptoms and higher levels of life satisfaction. Multivariate regression analyses indicated that shifting longevity estimates toward less time or toward uncertainty was related to increases in religious life meaning and forgiveness and to decreased spiritual struggle over the 6-month interval. No effects were observed for daily spiritual experiences.

Because very little is known about how individuals estimate their remaining life span, these results establish information regarding their basis (i.e., not clinical or functional) and stability, at least in the context of advanced heart failure. In addition, the notion that individuals become more spiritual as they perceive the approach of death was borne out in terms of multiple aspects of spirituality.

This research examined the psychometric properties of previously published short forms of the Geriatric Depression Scale (GDS) in patients receiving palliative care. It also uses the full form of the GDS to examine the prevalence of nonsomatic symptoms of depression in palliative patients.

Participants were 84 patients with advanced cancer attending palliative care outpatient clinics. Scores for short forms of the GDS were derived from administering the original 30-item scale. Patients also completed the single item numerical analogue scale for depression from the Edmonton Symptom Assessment System and parallel numerical analogue scales for will-to-live and hope. A subset of the sample completed the measures twice. Short forms were judged on the extent to which they captured information gained from the full scale and their internal consistency, test–retest reliability, convergent and concurrent validity, and their distribution of scores.

Overall, five short forms showed good psychometric properties at both visits. Two of these forms were very brief. Some nonsomatic symptoms assessed on the full GDS were reported with high frequency. However, few individuals reported a large number of symptoms. At both visits, patients identified as likely to have severe depression gave different responses from other patients on most items on the GDS-30.

Several short forms of the GDS may be appropriate for use in palliative care. Patients identified as likely to have severe depression showed many of the same symptoms that characterise depression in other geriatric populations.

Little is known about the prevalence of psychiatric disorders in French cancer patients. This study aimed to assess the feasibility of a screening procedure using the Psychological Distress Scale (PDS). The PDS is a French adaptation of the National Comprehensive Cancer Network Distress Thermometer. The screening performance of the PDS was assessed by comparison with the established clinical case threshold on the Hospital Anxiety and Depression Scale (HADS).

Among 598 consecutive cancer outpatients recruited in two cancer centers in Paris, 561 (94%) agreed to complete the PDS, the HADS, the European Organisation for Research and Treatment of Cancer core quality of life questionnaire (EORTC QLQ-C30), and study-specific psychosocial questions.

A receiver operating characteristic (ROC) analysis was performed, using a HADS cutoff score of 15 or greater to identify patients with psychological distress. This yielded a PDS cutoff score of 3, giving 76% sensitivity and 82% specificity. With this cutoff score, the prevalence of psychological distress was 38%. PDS scores were significantly related to scores from the HAD total scale (r = .64), HAD anxiety (r = .61) and HAD depression (r = .39) subscales, and EORTC QLQ-C30 emotional functioning (r = .56) and global health state (r = .44). In multivariate analyses, factors associated with psychological distress were female gender, taking analgesics, receiving professional psychological help, perceived psychosocial difficulties and lack of social support.

Using the PDS appeared feasible, acceptable and effective for psychological distress screening in French ambulatory cancer care settings.

The aims of this study were to describe hope in a sample of hospitalized oncology patients in pain and to determine if various demographic, clinical, and pain characteristics were related to hope. In addition, the individual item and total Herth Hope Index (HHI) scores for these oncology inpatients with pain were compared with those from the general Norwegian population.

Oncology inpatients in pain (n = 225) were recruited from the Norwegian Radium Hospital. The research instruments included the HHI, the Brief Pain Inventory (BPI), and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Data were analyzed using descriptive statistics, Pearson's correlations, and one-sample t tests.

Total HHI scores in oncology inpatients with pain were comparable to a similar sample in Taiwan. The Norwegian oncology inpatients reported significantly higher total HHI scores than the general Norwegian population. The largest difference was on the item “I feel scared about my future.” No relationships were found between total HHI scores and any of the pain intensity scores. Significant relationships were found between total HHI scores and the more psychosocial interference items on BPI and sleep.

The higher levels of hope in the oncology inpatients with pain compared with the general Norwegian population may reflect a “response shift” in the patients' evaluation of hope. Although the difference is relatively small, it may represent a clinically meaningful difference. The fact that significant relationships were found between HHI scores and the more psychosocial interference scores on BPI suggest that hope may be more related to psychosocial effects on pain than on its physical effects.

Little is known about the subjective experience of surrogates who authorize do not resuscitate (DNR) orders. This experience seems especially acute in settings such as New York State, where patients and surrogates generally give written consent for DNR orders. The goal of this study is to investigate the subjective and emotional experience of surrogates who authorize DNR orders in this setting.

A qualitative, phenomenological research design was used. Surrogates of patients on the medical service were approached no earlier than 1 day and no later than 7 days after authorizing a DNR order. The interview guide was open-ended and included general prompts. Interviews were taped and transcribed. Researchers then coded the transcripts and examined the data for clusters of themes. They then met to discuss and recode disagreements.

Saturation was met after 10 subjects were interviewed. The following major surrogate themes were found: (1) Signing a DNR order is a process, not an isolated act. (2) The presence or absence of good quality communication and psychological support from health care personnel are among the most important factors in this process. (3) The process of signing a DNR order can raise many negative emotions including guilt, ambivalence, and conflict. (4) Prior discussions, documents such as living wills, and consensus among family members make it easier to determine the patient's wishes and carry them out by signing the DNR. (5) The surrogates believed that signing a DNR order is a prerequisite to obtaining adequate opioid analgesia.

The experience of authorizing a DNR order is a complex and emotional decision-making process. Evidence of the patient's prior wishes and support from health care personnel make the process easier. It is disconcerting that surrogates viewed DNR orders as a prerequisite to obtaining relief for a patient's pain or suffering.

There has been an increasing interest in the measurement of patients efforts to find meaning during the experience of a life-threatening illness. The aim of this study was to validate the German version of the Life Attitude Profile–Revised (LAP-R), a multidimensional measure of meaning and purpose.

A total of 511 prostate cancer patients with an average age of 64 years filled in the questionnaire during outpatient follow up care (response rate 70%).

Five of the original six dimensions were replicated by exploratory and confirmatory factor analysis: Coherence, Existential Vacuum, Choice/Responsibleness, Death Acceptance, and Goal Seeking. The Purpose dimension was not replicated. Most LAP-R subscales showed good internal consistencies with Cronbach's α between .80 and .82, whereas the reliability for Existential Vacuum (α = .69) and Goal Seeking (α = .74) was less sufficient, but still acceptable. Results show significant concurrent associations between all LAP-R dimensions and measures of emotional distress, coping, and health-related quality of life; however, moderate correlations were found only for Existential Vacuum and depression, and inversely for depressive coping and the mental health subscale.

The German LAP-R is a reliable and valid instrument that can be recommended for further use in research and clinical cancer care.

The present study investigated what types of transformation terminally ill cancer patients experienced from diagnosis until the terminal stage, what meanings terminally ill cancer patients attributed to their illness, and whether or not those who attributed positive meaning to their illness achieved high levels of spiritual well-being as a preliminary study.

Ten terminally ill cancer patients in the hospice wards of two general hospitals participated. A clinical psychologist conducted a semistructured interview with the patients individually for about 60 min. Patients completed the FACIT-Sp and HADS before the interview and talked about the meanings of cancer experience. The contents of the interviews were analyzed qualitatively. Patients were separated into high and low levels of spiritual-well being by the median of FACIT-Sp scores.

Three types of transformation were extracted: “group with peaceful mind,” “group with both positive attitude and uneasy feeling,” and “groups with uneasy feeling.” As attributed meanings to the illness, five categories were extracted: “positive meaning,” “natural acceptance,” “negative acceptance,” “search for meaning,” and “regret and sorrow.” Patients in the high level spiritual well-being group attributed the meaning of illness to “positive meaning” and “natural acceptance,” and those in the low level spiritual well-being group attributed it to “regret and sorrow” and “search for meaning.”

Some Japanese terminally ill cancer patients experienced positive transformation, and patients who attributed “positive meaning” and “natural acceptance” to their illness experience achieved high levels of spiritual well-being.

Psychological distress of cancer patients' family members is treated by psychiatric consultation service for outpatients at National Cancer Center Hospitals in Japan. The purpose of this study was to identify psychiatric disorders and explore background characteristics of cancer patients' family members referred to psychiatric consultation service, so that we could better understand current utilization of this psychiatric consultation service for cancer patients' family members.

A retrospective descriptive study using clinical practice data obtained for 5 years (from January 2000 to December 2004) was conducted at two National Cancer Center Hospitals. We reviewed the psychiatric consultation database, computerized patient database of the National Cancer Center Hospitals, and medical charts of cancer patients' family members who were referred to psychiatry and their cancer patients.

Out of a total of 4992 psychiatric consultations, 118 (2%) were for cancer patients' family members. The most common psychiatric disorders among cancer patients' family members were adjustment disorders (n = 69, 58%), followed by major depression (n = 30, 25%). Female (n = 101, 86%), spouse (n = 87, 74%), married (n = 92, 78%), and housewife (n = 63, 53%) were the most common background characteristics of the family members. Sixty-four percent of cancer patients (n = 75) were hospitalized at the time of their family members' referral and 34% of cancer patients (n = 40) had already received psychiatric consultation service and 55% of cancer patients (n = 65) had delivered bad news prior to their family members' referral.

We found that very few family members were provided with psychiatric consultation service at two National Cancer Center Hospitals. Adjustment disorders are suggested to be the most common psychiatric disorders among cancer patients' family members.

One-quarter of all U.S. chronic-disease deaths occur in nursing homes, yet few studies examine palliative care quality in these settings. This study tests whether racial and/or age-based differences in end-of-life care exist in these institutional settings.

We abstracted residents' charts (N = 1133) in 12 nursing homes. Researchers collected data on indicators of palliative care in two domains of care—advance care planning and pain management—and on residents' demographic and health status variables. Analyses tested for differences by race and age.

White residents were more likely than minorities to have DNR orders (69.5% vs. 37.3%), living wills (39% vs. 5%), and health care proxies (36.2% vs. 11.8%; p < .001 for each). Advance directives were highly and positively correlated with age. In-depth advance care planning discussions between residents, families, and health care providers were rare for all residents, irrespective of demographic characteristics. Nursing staff considered older residents to have milder and less frequent pain than younger residents. We found no disparities in pain management based on race.

To the extent that advance care planning improves care at the end of life, racial minorities in nursing homes are disadvantaged compared to their white fellow residents. Focusing on in-depth discussions of values and goals of care can improve palliative care for all residents and may help to ameliorate racial disparities in end-of-life care. Staff should consider residents of all ages as appropriate recipients of advance care planning efforts and should be cognizant of the fact that individuals of all ages can experience pain. Nursing homes may do a better job than other health care institutions in eliminating racial disparities in pain management.

General practitioners (GPs) play an integral role in addressing the psychological needs of palliative care patients and their families. This qualitative study investigated psychosocial issues faced by GPs in the management of patients receiving palliative care and investigated the themes relevant to the psychosocial care of dying patients.

Fifteen general practitioners whose patient had been recently referred to the Mt. Olivet Palliative Home Care Services in Brisbane participated in an individual case review discussions guided by key questions within a semistructured format. These interviews focused on the psychosocial aspects of care and management of the referred patient, including aspects of the doctor/patient relationship, experience of delivering diagnosis and prognosis, addressing the psychological concerns of the patients' family, and the doctors' personal experiences, reactions, and responses. Qualitative analysis was conducted on the transcripts of these interviews.

The significant themes that emerged related to perceived barriers to exploration of emotional concerns, including spiritual issues, and the discussion of prognosis and dying, the perception of patients' responses/coping styles, and the GP's personal experience of the care (usually expressed in terms of identification with patient).

The findings indicate the significant challenges facing clinicians in discussions with patients and families about death, to exploring the patient's emotional responses to terminal illness and spiritual concerns for the patient and family. These qualitative date indicate important tasks in the training and clinical support for doctors providing palliative care.

End-of-life communication is crucial because most U.S. hospitals implement cardiopulmonary resuscitation (CPR) in the absence of do-not-resuscitate directives (DNRs). Despite this, there is little DNR utilization data to guide the design of communication-training programs. The objective of this study was to determine DNR utilization patterns and whether their use is increasing.

A retrospective database analysis (2000–2005) of DNR data for 206,437 patients, the entire patient population at Memorial Sloan-Kettering Cancer Center (MSKCC), was performed.

The hospital recorded, on average, 4,167 deaths/year. In 2005, 86% of inpatient deaths had a DNR, a 3% increase since 2000 (p < .01). For patients who died outside the institution (e.g., hospice), 52% had a DNR, a 24% increase over 6 years (p < .00001). Adult inpatients signed 53% of DNRs but 34% were signed by surrogates. The median time between signing and death was 0 days, that is, the day of death. Only 5.5% of inpatient deaths had previously signed an outpatient DNR. Here, the median time between signing and death was 30 days.

Although DNR directives are commonly utilized and their use has increased significantly over the past 6 years, most cancer patients/surrogates sign the directives on the day of death. The proximity between signing and death may be a marker of delayed end-of-life palliative care and suboptimal doctor–patient communication. These data underscore the importance of communication-training research tailored to improve end-of-life decision making.

The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden.

To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004–2006. Qualitative content analysis was used to interpret the meaning regarding quality of life.

Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients’ psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team.

This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients’ quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients’ entire life situation and increases quality of life.

Although half a million Americans suffer from end stage renal disease (ESRD), their quality of end-of-life care has been woefully inadequate. The Renal Supportive Care Team is a demonstration project that is designed to elicit and provide for the needs of dialysis patients and their families throughout the trajectory of their illnesses.

Six focus groups, including medical health professionals, dialysis patients, family members, and bereaved family members, discussed how to promote improved palliative care and encourage hospice referral for patients with ESRD.

Respondents agreed that there needed to be greater education of both patients and families regarding all aspects of the disease process, open communication, on-going support between patients, families, and the staff, continuity of care, pain control, and assistance with advance care planning.

Palliative and supportive care issues in ESRD need greater attention.

Difficulties with diagnosis and aggressive, long-term treatment may result in lower quality of life (QOL), including high levels of anxiety, depression, and uncertainty, greater symptom distress, and lower overall QOL among women with avarian cancer. The purpose of this study was to describe demographic, clinical, and other risk factors associated with compromised QOL among women who have undergone surgery for avarian malignancies.

Subjects were recruited to participate in a clinical trial that tested a specialized nursing intervention addressing psychological and physical care among women post-surgical for avarian cancer. QOL was measured using five standardized self-report measures: the State-Trait Anxiety Scale (SAS), the Center for Epidemiological Studies Depression Scale (CES-D), the Mishel Uncertainty in Illness Scale (MUIS), the Symptom Distress Scale (SDS), and the Short-Form Health Survey (SF-12). Baseline data were collected while women were hospitalized following surgery.

The sample (n=145) included women with avarian cancer (58%) and other cancers metastasized to the avaries and abdomen (42%). Mean scores on the measures were consistent with or higher than previously reported means for similar populations. Women reporting the lowest QOL were more likely to be younger, more educated, and have early stage disease.

Women who have undergone surgery for ovarian malignancies have psychological needs that are often considered secondary to physical needs. Interventions should include routine screening for distress and referral to appropriate psychological and social services, thereby facilitating quality cancer care.

The decision to receive palliative care at home brings with it the complexity of managing a medication regime. Effective symptom control is often directly linked to medication management and relies on access to medications at all times. In home-based palliative care practice, polypropylene syringes of medications may be drawn up and left in clients' domestic refrigerators for subcutaneous administration by carers to provide immediate relief for symptoms such as pain and nausea. However, although there has been some discussion in the literature about the need for ready access to medications for symptom control of clients receiving care in the community, the feasibility of this practice has received scant attention. The aim of this article is to present the carers' experiences of administering medications in this manner.

Semistructured interviews with 14 carers, who were administering medication in a home-based palliative care setting, were analyzed using qualitative methods to develop meaning units and themes.

Interviews revealed that this practice was highly valued. The carers willingly assumed the responsibility of medication administration, as it allowed the clients to remain at home where they desired to be. They could provide immediate symptom relief, which was of utmost importance to both the client and carer. The carers were empowered in their caring role, being able to participate in the care provided, rather than standing on the sidelines as helpless observers. Carers acknowledged the security and ethical issues associated with the presence of certain medications in the home and valued the 24-h telephone support that was available to them. After clients had died, the carers reflected on their involvement in care and felt a sense of pride and achievement from administering medications in this way because they had been able to care for their loved ones at home and fulfill their wish to die there.

These interviews confirm the feasibility of this practice, which is a component of quality end-of-life care.

We previously reported that the nurse-assisted screening and psychiatric referral program (NASPRP) facilitated the psychiatric treatment of depressive patients, but the high refusal rate was a problem even though referral was recommended by the nurse to all positively screened patients. We modified the program so that the nurses could judge the final eligibility of referral using the result of the screening. This study assessed if the modified NASPRP led to more psychiatric referral of depressive patients.

We retrospectively evaluated the annual change of the psychiatric referral proportion and compared the findings among the usual care term, the NASPRP term, and the modified NASPRP terms.

The referral proportions of the modified NASPRP terms were 4.4% and 3.9%. These were not significantly higher than the usual care term (2.5%), and significantly lower than the NASPRP term (11.5%).

The modified NASPRP did not facilitate psychiatric treatment of depressive patients and another approach is needed.