Improving the care provided for people dying in acute healthcare facilities has been identified as a priority for Australian healthcare. Previous observations support the idea that quality care improves outcomes for the dying person as well as for their relatives. To improve care it is essential that there be a clear understanding of which issues require attention. The aim of our project was to improve the understanding of the experiences of family members whose relatives had died on an acute medical ward.

A mixed-methods approach was adopted for our study. With the approval of the human ethics committee, relatives were approached within three months of the death of their family member and invited to participate in an interview based on a quality-of-dying-and-death (QoDD) tool.

Of the 50 families approached, 10 agreed to be interviewed. When they were asked to reflect on the experiences of the dying person, the issues that they articulated most strongly related to the need to have time before death to address issues and spend time with important others. With regards to the needs of the dying person's relatives, people articulated strongly that they needed information, support, and evidence of good symptom control. The provision of support post-death was also poignantly highlighted.

This study supports observations made in other clinical areas that have identified that timely communication, good symptom control, and ongoing support for both the dying person and their family has important ramifications. Articulating such details is an important part of understanding which aspects of care require attention.

We describe an exemplary case of congestive heart failure (CHF) symptoms controlled with milrinone. We also analyze the benefits and risks of milrinone administration in an unmonitored setting.

We describe the case of a patient with refractory leukemia and end-stage CHF who developed severe dyspnea after discontinuation of milrinone. At that point, despite starting opioids, she had been severely dyspneic and anxious, requiring admission to the palliative care unit (PCU) for symptom control. After negotiation with hospital administrators, milrinone was administered in an unmonitored setting such as the PCU. A multidisciplinary team approach was also provided.

Milrinone produced a dramatic improvement in the patient's symptom scores and performance status. The patient was eventually discharged to home hospice on a milrinone infusion with excellent symptom control.

This case suggests that milrinone may be of benefit for short-term inpatient administration for dyspnea management, even in unmonitored settings and consequently during hospice in do-not-resuscitate (DNR) patients. This strategy may reduce costs and readmissions to the hospital related to end-stage CHF.

Our aim was to examine the characteristics of delirium in the severely medically ill cancer population on the basis of sociodemographic and medical variables, delirium severity, and phenomenology, as well as severity of medical illness.

All subjects in the database were recruited from psychiatric referrals at Memorial Sloan Kettering Cancer Center (MSKCC). Sociodemographic and medical variables, as well as the Karnofsky Performance Status (KPS) scale and Memorial Delirium Assessment Scale (MDAS) scores were recorded at baseline. Subsequently, these variables were analyzed with respect to the severity of the medical illness.

Out of 111 patients, 67 qualified as severely medically ill. KPS scores were 19.7 and 30.7 in less severe illness. There were no significant differences with respect to age, history of dementia, and MDAS scores. Although the severity of delirium did not differ, an increased frequency and severity of consciousness disturbance, disorientation, and inability to maintain and shift attention did exist. With respect to etiologies contributing to delirium, hypoxia and infection were commonly associated with severe illness. In contrast, corticosteroid administration was more often associated with less severe illness. There were no differences with respect to opiate administration, dehydration, and CNS disease, including brain metastasis.

Delirium in the severely medically ill cancer population has been characterized by an increased disturbance of consciousness, disorientation, and an inability to maintain and shift attention. However, the severity of illness did not predict severity of delirium. Furthermore, hypoxia and infection were etiologies more commonly associated with delirium in severe illness, whereas the administration of corticosteroids was associated with less severe illness.

The research about follow-up patterns of women attending high-risk breast-cancer clinics is sparse. This study sought to profile daughters of breast-cancer patients who are likely to return versus those unlikely to return for follow-up care in a high-risk clinic.

Our investigation included 131 patients attending the UCLA Revlon Breast Center High Risk Clinic. Predictor variables included age, computed breast-cancer risk, participants' perceived personal risk, clinically significant depressive symptomatology (CES–D score ≥ 16), current level of anxiety (State–Trait Anxiety Inventory), and survival status of participants' mothers (survived or passed away from breast cancer).

A greater likelihood of reattendance was associated with older age (adjusted odds ratio [AOR] = 1.07, p = 0.004), computed breast-cancer risk (AOR = 1.10, p = 0.017), absence of depressive symptomatology (AOR = 0.25, p = 0.009), past psychiatric diagnosis (AOR = 3.14, p = 0.029), and maternal loss to breast cancer (AOR = 2.59, p = 0.034). Also, an interaction was found between mother's survival and perceived risk (p = 0.019), such that reattendance was associated with higher perceived risk among participants whose mothers survived (AOR = 1.04, p = 0.002), but not those whose mothers died (AOR = 0.99, p = 0.685). Furthermore, a nonlinear inverted “U” relationship was observed between state anxiety and reattendance (p = 0.037); participants with moderate anxiety were more likely to reattend than those with low or high anxiety levels.

Demographic, medical, and psychosocial factors were found to be independently associated with reattendance to a high-risk breast-cancer clinic. Explication of the profiles of women who may or may not reattend may serve to inform the development and implementation of interventions to increase the likelihood of follow-up care.

The present study is the result of theory-driven research investigating the role of the search for and presence of meaning in enhancing both mental adjustment and eudaimonic well-being in cancer patients.

A cross-sectional study involved 266 cancer patients currently in the treatment and management phase of their illness. Data were collected by a written questionnaire. The search for meaning was assessed with the Seeking of Noetic Goals Test, and the presence of meaning was assessed using the Purpose in Life Test. Mental adjustment to a cancer diagnosis was assessed by two subscales of the Italian version of the Mini-Mental Adjustment to Cancer Scale, and eudaimonic well-being was assessed with the Psychological Well-Being Scale. Correlation and mediation analyses based on five thousand bootstrapping samples were performed.

The mediation analyses showed that the presence of meaning totally or partially mediated the effect of the search for meaning on both mental adjustment and eudaimonic well-being. Further correlation analyses showed a high negative correlation between eudaimonic well-being and hopelessness.

Our results appear relevant from both the theoretical and clinical points of view. They support a deeper understanding of the combined contribution of the search for and presence of meaning in promoting well-being in cancer patients. Simultaneously, they are consistent with suggestions from recent studies on the clinical psychology of posttraumatic growth and emphasize the relevance of eudaimonic well-being as a protective factor for hopelessness.

The death of a loved one is one of the most stressful events of life, and such stress affects the physical and psychological well-being of the bereaved. Dissociative amnesia is characterized by an inability to recall important autobiographical information. Dissociative amnesia in the bereaved who have lost a loved one to cancer has not been previously reported. We discuss herein the case of a patient who developed dissociative amnesia the day after the death of here beloved husband.

A 38-year-old woman was referred for psychiatric consultation because of restlessness and abnormal behavior. Her 44-year-old husband had died of pancreatic cancer the day before the consultation. On the day of the death, she looked upset and began to hyperventilate. The next day, she behaved as if the deceased were still alive, which embarrassed her family. At her initial psychiatric consultation, she talked and behaved as if her husband was still alive and in the hospital.

Her psychiatric features fulfilled the DSM–V criteria for dissociative amnesia. The death of her husband had been very traumatic for her and was considered to have been one of the causes of this dissociation.

This report adds to the list of psychiatric symptoms in the bereaved who have lost a loved one to cancer. In an oncology setting, we should consider the impact of death, the concomitant defense mechanisms, and the background of the families.

With growing numbers of pediatric cancer survivors, it is becoming increasingly important to investigate the psychosocial sequelae of surviving cancer diagnosed during childhood or adolescence. It is particularly important to study the psychosocial needs of adolescent survivors of pediatric cancer because adolescence is a critical time during psychosocial development. Although there is existent literature about the general psychosocial adjustment of this population, the literature regarding anxiety is scant. This brief review aimed to assesses currently available literature that addresses anxiety in adolescent cancer survivors.

Articles assessing psychosocial adjustment in adolescent survivors of pediatric cancer were reviewed for information regarding anxiety symptoms.

To the authors' knowledge, there is no literature that focuses specifically on anxiety in this population. However, many articles reported results that indicated the possibility of increased anxiety in this group.

It is critical to further investigate anxiety in this group and develop appropriate interventions if necessary. Doing so will aid the process of enhancing psychosocial care for adolescent cancer survivors.

It is common for patients to experience positive and negative psychological changes (e.g., posttraumatic growth or demoralization) after being diagnosed with cancer. Although demoralization and posttraumatic growth are both related to meaning-making, little attention has been paid to the associations among these concepts. The current study investigated the relationship between demoralization, posttraumatic growth, and meaning-making (focusing on sense-making and benefit-finding during the experience of illness) in cancer patients.

Some 200 cancer patients (with lung cancer, lymphoma, or leukemia) at the MacKay Memorial Hospital in New Taipei completed the Demoralization Scale–Mandarin Version (DS–MV), the Chinese Posttraumatic Growth Inventory (CPTGI), and a self-designed questionnaire for assessing sense-making and benefit-finding.

Demoralization was negatively correlated with posttraumatic growth, sense-making, benefit-finding, and time-since-diagnosis. Multiple regression analysis showed that meaning-making had different effects on demoralization and posttraumatic growth. The interactions of sense-making with either benefit-finding or time-since-diagnosis significantly predicted demoralization. Individuals with relatively higher sense-making and benefit-finding or shorter time-since-diagnosis experienced less demoralization.

The suffering of cancer may turn on the psychological process of demoralization, posttraumatic growth, and meaning-making in patients. Cancer patients who evidenced higher posttraumatic growth experienced less demoralization. Trying to identify positive changes in the experience of cancer may be a powerful way to increase posttraumatic growth. As time goes by, patients experienced less demoralization. Facilitating sense-making can have similar effects. Cancer patients with less benefit-finding experience higher demoralization, but sense-making buffers this effect.

Although relief from suffering is essential in healthcare and palliative care, few efforts have aimed at defining, operationalizing, and developing standards for its detection, assessment, and relief. In order to accurately explore and identify factors that contribute to suffering, more attention needs to be focused on quality assessment and measurement, not only for assessment purposes but also to test the effectiveness of interventions in relieving suffering. The scope of the present paper is to discuss the strategies that aid in the detection and assessment of the suffering experience in patients with chronic illnesses and/or in palliative care settings, and the dilemmas commonly encountered regarding the quality of available assessment measures.

A general description of instruments available for suffering assessment is provided. Matters regarding the accuracy of the measures are discussed. Finally, some dilemmas regarding the quality of the measures to screen for and assess suffering are presented.

There have been some achievements toward adequate suffering assessment. However, a more robust theoretical background is needed, and empirical evidence aimed at supporting it is required. In addition, further examination of the psychometric characteristics of instruments in different populations and cultural contexts is needed.

An interesting number of assessment measures are now available for use in the palliative care setting, employing innovative approaches. However, further examination and validation in different contexts is required to find high-quality tools for detection of suffering and assessment of the results of intervention.

Although hospice agencies are required to provide informal caregivers (family or friends of the patient) with formal bereavement support when their loved one passes, most bereavement interventions lack standardization and remain untested. We employed the Dual Processing Model of Bereavement as a theoretical framework for assessing the potential of a secret Facebook group for bereaved hospice caregivers.

A mixed-methods approach was utilized to analyze online communication (posts and comments) in the secret Facebook group, and self-reported outcome measures on depression and anxiety were compared pre- and post-intervention.

Sixteen caregivers participated in the secret Facebook group over a period of nine months. The majority of online talk was oriented to restoration, revealing abrupt and anticipated triggers that evoked feelings of loss. Caregivers also shared loss orientation through storytelling, sharing and giving advice, and encouraging others to manage the challenges of coping. Caregiver anxiety and depression were lower after the intervention.

This pilot study provides insight into the use of a secret Facebook group to facilitate bereavement support to caregivers. Findings highlight the promise of Facebook for hospice bereavement support. Providers and researchers are encouraged to explore the positive outcomes associated with bereavement support.

In the biopsychosocial approach, perceived social support has served as a protective factor for psychological adjustment to cancer. This study aimed to determine the influence of different coping responses and health-related quality of life (HRQoL) domains on perceived social support during cancer treatment.

A cross-sectional analysis was carried out in a sample of 757 cancer outpatients. The Medical Outcomes Study Social Support Survey (MOS–SSS) was employed to assess perceived social support. The Mental Adjustment to Cancer (MAC) Scale measured coping response, and HRQoL was tested with the Medical Outcomes Study Short Form–36 (SF–36). Multivariate analyses were carried out to examine the extent to which coping and HRQoL were associated with perceived social support.

Coping response explained only 2% of the variance in perceived social support, but Hopelessness had a significant influence on perceived social support (p ≤ 0.01). HRQoL, physical, and mental domains made a significant contribution toward perceived social support, accounting for around 10% of total variance. More than coping response, HRQoL's physical and mental domains had an important influence on perceived social support during cancer treatment.

The findings of the current study report the importance of HRQoL domains in predicting perceived social support during cancer treatment, emphasizing the holistic and multidisciplinary approach to facilitate adjustment to cancer.

Informal caregivers of palliative care patients play an essential role in the coordination of care for patients during their final phases of life. However, undertaking a caregiving role can have enduring psychological consequences for caregivers and interfere with functioning. Studies have investigated a variety of factors associated with individual differences in caregiver psychosocial outcomes, but little is known about their relative impact, and there is a need for guiding models to support research in this area.

A review of the literature was conducted on factors influencing the psychological distress and grief of caregivers. Drawing from acceptance and commitment therapy (ACT) and Stroebe and colleagues' integrative risk factor framework, we developed a process model to describe individual differences in caregiver psychological distress and grief.

The model presents caregiver psychological distress and grief as functions of death attitudes and communication about death and dying, mediated by acceptance and valued living from an ACT perspective. An outline of the empirical and theoretical underpinnings for each component in the model is provided.

The presented model is an inherently strengths-based model that is concordant with acceptance- and values- (ACT) based interventions to facilitate coping in caregivers.

The determinates of economic burden in lung cancer caregivers are poorly understood. Of particular interest is the role patient symptoms play in caregiver economic burden. Guided by a stress process conceptual framework, this study examined the predictors of economic burden reported by lung cancer spousal caregivers. Our study focused on the pathway of contextual and stressor variables leading to economic burden in lung cancer caregivers.

Relying on survey data from 138 spouses, structural equation modeling was employed to examine the determinants of economic burden measured using the Family Impact Survey. Contextual variables included age, gender, education, and income; and stressor variables included patient physical and mental symptoms, as well as number of children in the home.

A significant indirect path between age and economic distress through patient symptoms (p = 0.05) indicates younger spouses providing care for patients with more symptoms and reporting greater economic burden. Direct effects between contextual variables and economic burden revealed that caregivers with less education (p = 0.02) and those with more children at home (p = 0.01) reported more adverse economic outcomes.

Numerous factors impact spousal caregivers' economic burden, including the presence of children at home, being a younger caregiver, and lower educational attainment by caregivers. Moreover, the direct effects between age and economic burden were not significant, supporting the clear role patient symptoms play in the path to economic burden in spousal caregivers. These results underscore the need for healthcare providers to address psychosocial factors when dealing with patients and families with lung cancer. Specifically, the results highlight the importance of addressing patient symptoms early before they threaten the family's economic well-being.

This study examined changes in health-related quality of life (HRQoL) and quality of care (QoC) as perceived by terminally ill cancer patients and a stratified set of HRQoL or QoC factors that are most likely to influence survival at the end of life (EoL).

We administered questionnaires to 619 consecutive patients immediately after they were diagnosed with terminal cancer by physicians at 11 university hospitals and at the National Cancer Center in Korea. Subjects were followed up over 161.2 person-years until their deaths. We measured HRQoL using the core 30-item European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and QoC using the Quality Care Questionnaire–End of Life (QCQ–EoL). We evaluated changes in HRQoL and QoC issues during the first three months after enrollment, performing sensitivity analysis by using data generated via four methods (complete case analysis, available case analysis, the last observation carried forward, and multiple imputation).

Emotional and cognitive functioning decreased significantly over time, while dyspnea, constipation, and pain increased significantly. Dignity-conserving care, care by healthcare professionals, family relationships, and QCQ–EoL total score decreased significantly. Global QoL, appetite loss, and Eastern Cooperative Oncology Group Performance Status (ECOG–PS) scores were significantly associated with survival.

Future standardization of palliative care should be focused on assessment of these deteriorated types of quality. Accurate estimates of the length of life remaining for terminally ill cancer patients by such EoL-enhancing factors as global QoL, appetite loss, and ECOG–PS are needed to help patients experience a dignified and comfortable death.

Pseudobulbar affect/emotional incontinence is a potentially disabling condition characterized by expressions of affect or emotions out of context from the normal emotional basis for those expressions. This condition can result in diagnostic confusion and unrelieved suffering when clinicians interpret the emotional expressions at face value. In addition, the nomenclature, etiology, and treatment for this condition remain unclear in the medical literature.

We report the case of a 60-year-old woman with multiple sclerosis who was referred to an inpatient psychiatry unit with complaints of worsening depression along with hopelessness, characterized by unrelenting crying. Our investigation showed that her symptoms were caused by pseudobulbar affect/emotional incontinence stemming from multiple sclerosis.

The patient's history of multiple sclerosis and the fact that she identified herself as depressed only because of her incessant crying suggested that her symptoms might be due to the multiple sclerosis rather than to a depressive disorder. Magnetic resonance imaging demonstrated a new plaque consistent with multiple sclerosis lateral to her corpus callosum. Her symptoms resolved completely within three days on valproic acid but returned after she was cross-tapered to dextromethorphan plus quinidine, which is the FDA-approved treatment for this condition.

This case provides important additional information to the current literature on pseudobulbar affect/emotional incontinence. The existing literature suggests a selective serotonin reuptake inhibitor (SSRI) and dextromethorphan/quinidine (Nuedexta) as first-line treatments; however, our patient was taking an SSRI at the time of presentation without appreciable benefit, and her symptoms responded to valproic acid but not to the dextromethorphan/quinidine. In addition, the case and the literature review suggest that the current nomenclature for this constellation of symptoms can be misleading.

Caregiving partners constitute a unique group, who provide both physical and emotional care for patients. There has been extensive research conducted on caregivers during either the caregiving or bereavement phase; however, these phases are often treated as separate entities rather than as part of a continuum.

In this paper, utilizing relevant literature and clinical observations, we map the emotional journey and lived experience of caregivers moving from disease progression, to the end of life, to the dying process itself, and then through life after the death of a partner. Along this journey, we identify the links between pre-death caregiving and bereavement.

Our illustration raises awareness regarding the unmet needs experienced by caregiving partners across the continuum and provides an alternative framework through which clinicians can view this course.

of Results We bolster arguments for improved palliative care services and early interventions with distressed caregiving partners by emphasizing continuity of care both before and after a patient's death.

Optimal communication is essential in ensuring that the palliative care needs of patients are met. This continues to be an area of concern for healthcare providers. The goal of our present review was to gain a deeper understanding of the communication experiences of patients with palliative care needs that have been identified within the qualitative literature.

A systematic search for qualitative research papers was undertaken in February of 2012. Five databases (ASSIA, CINAHL, MEDLINE, PsychArticles, and PsychINFO) were searched using the search terms [“palliative care” OR “terminal care” OR “end of life care”] AND [“experience” OR “perspective” OR “qualitative” OR “interview”] AND [“patients” OR “clients” OR “service-user”]. Meta-synthesis was conducted on the data within the found papers.

A line-of-argument synthesis of 15 studies yielded four overarching themes: talking—facilitating and inhibiting factors; the importance of humanitarian qualities within communication encounters; perceptions of autonomy within communication experiences; and individual differences in preferences for honesty within interactions.

Our findings are discussed in relation to existing literature and offer a deeper insight into the communication experiences of this clinical population. A number of clinical implications are offered for the healthcare professionals who are providing support to patients with palliative care needs.

The factors associated with persistent delirium, in contrast to resolved delirium, have not been studied well. The aim of our present study was to identify the factors associated with delirium resolution as measured by the Memorial Delirium Assessment Scale (MDAS) and functional improvement as measured by the Karnofsky Performance Status (KPS) scale.

All subjects were recruited from psychiatric referrals at the Memorial Sloan Kettering Cancer Center (MSKCC). The two study instruments were performed at baseline (T1), at 2–3 days (T2), and at 4–7 days (T3). Subjects with persistent delirium were compared to those with resolved delirium in respect to sociodemographic and medical variables.

Overall, 26 out of 111 patients had persistent delirium. These patients were older, predominantly male, and had more frequently preexisting comorbid dementia. Among cancer diagnoses and stage of illness, brain cancer and terminal illness contributed to persistent delirium or late response, whereas gastrointestinal cancer was associated with resolved delirium. Among etiologies, infection responded late to delirium management, usually at one week. Furthermore, delirium was more severe in patients with persistent delirium from baseline through one week. At baseline, MDAS scores were 20.1 in persistent delirium compared to 17 to 18.8 in resolved delirium (T2 and T3), and at one week of management (T3), MDAS scores were 15.2 and 4.7 to 7.4, respectively. At one week of management, persistent delirium manifested in more severe impairment in the domains of consciousness, cognition, organization, perception, psychomotor behavior, and sleep–wake cycle. In addition, persistent delirium caused more severe functional impairment.

In this delirium sample, advanced age and preexisting dementia, as well as brain cancer, terminal illness, infection, and delirium severity contributed to persistent delirium or late response, indicating a prolonged and refractory course of delirium, in addition to more severe functional impairment through one week of management.

Caregivers often are unprepared for their role yet serve as the frontline in the provision of palliative care services. The aim of our study was to explore family caregivers' experiences from their perspective as they cared for dying relatives.

Using the Photovoice methodology, ten unpaid family caregivers took photographs depicting issues they experienced as informal caregivers of an ill family member who had less than a year to live. Each participant met with the first author individually four to six times and explained their role as caregiver through photographs and stories.

The results were clustered into seven themes: physical demands, emotional/spiritual stress, preparing for the future, securing help, medication management, navigating the agencies, and relationships.

Caregivers perform a variety of tasks, often under stress. This study highlights the main areas where problems lie and the areas that palliative care health professionals need to be aware of so they can assist and educate caregivers, with the goal of finding solutions to the burdens of care. The themes were found to be intertwined, showing the complexity of the caregiving role.