Objective: Breathlessness is one of the core symptoms in many advanced conditions. The subjective nature of the symptom has been acknowledged in many definitions, emphasizing that it can only be fully perceived and interpreted by the patients themselves.

Aim: To review and assess the evidence on the psychosocial nature or experience of breathlessness.

Methods: Relevant literature was identified through electronic and hand searches. Studies with qualitative enquiry or mixed method designs were included. The methodological quality of studies was assessed with a standard grading scale.

Results: Twenty-two studies were identified, 12 from the United Kingdom, 4 from the United States, 3 from Canada, 1 from Sweden, 1 from Iceland, and 1 from Finland. The nature of the studies determined the themes in which the studies were subsumed. Studies on COPD (19) outnumbered “all other conditions” (3), one of which had COPD and cancer patients and so these were analyzed separately. Within the COPD category most studies (17) considered the experience of breathlessness from the perspective of the patient, 1 study from the informal carer, and 1 from the professional carer. Most of the papers sought to understand the meaning of the symptom in the patient's daily life. The other papers demarcated separate areas of the experience of acute exacerbations and the patient's view on care. The studies explored the subjective component of breathlessness, as part of human experience and social life. The papers showed the influence of the meaning the symptom has for those affected on their ability to cope and on their management.

Significance of results: Although the work in this area is still dominated by research on COPD, the totality of the evidence now shows breathlessness as an intractable symptom in other advanced conditions. Practice recommendations focused on the holistic approach as part of palliative and nursing care.

Objective: Parents coping with a diagnosis of advanced cancer experience distress and guilt about the impact of the disease on their children but report that there are few resources specific to advanced disease to guide and support them in discussions with their children. Although some resources have been developed to assist parents with advanced cancer, it appears that these are not widely disseminated.

Methods: To determine the need for a brief resource that could be given to parents at the point of diagnosis of advanced cancer, including its content, in-depth interviews were conducted with eight women with advanced breast cancer.

Results: Women confirmed that they had received minimal assistance from health professionals in discussing the diagnosis with their children, and even when professional counselors were accessed they were not always attuned to the specific needs of parents with advanced cancer. Women felt frustrated that information they did access focused on early disease and lacked the details women felt they needed in coping with advanced cancer. Women felt that there was a need for a brief resource that reassured parents about the impact of the cancer on their children, including practical strategies to help them cope and examples of the ways other parents had responded to difficult questions such as about parental death. A draft resource was developed, critically reviewed by the participants, and their comments incorporated into a final version.

Significance of results: This article expands on the themes highlighted by women as important to assist parents with advanced cancer, including the final resource that was developed.

According to the World Health Organization, the patient and family should be viewed as the “unit of care” when palliative care is required. Therefore family caregivers should receive optimal supportive care from health professionals. However, the impact of supporting a dying relative is frequently described as having negative physical and psychosocial sequalae. Furthermore, family caregivers consistently report unmet needs and there has been a dearth of rigorous supportive interventions published. In addition, comprehensive conceptual frameworks to navigate the family caregiver experience and guide intervention development are lacking. This article draws on Lazarus and Folkman's seminal work on the transactional stress and coping framework to present a conceptual model specific to family caregivers of patients receiving palliative care. A comprehensive account of key variables to aid understanding of the family caregiver experience and intervention design is provided.

Objective: The objective of this review is to describe the current status of research on hope in palliative care.

Methods: Integrative review was conducted to determine current knowledge on the topic. CINAHL and PubMed MEDLINE databases were used to find the articles relevant to this review. The data consisted of 34 articles on hope and palliative care published in peer-reviewed journals. A qualitative approach utilizing content analysis was used in this review.

Results: There are at least two overarching themes of patients' hope in the palliative context: “living with hope” and “hoping for something” which however are not separate contents. Several instruments for measuring hope in a palliative context have been produced. However, future research is needed to gather further validity evidence for these instruments. Factors related to patients, other people (e. g. significant others), illness, care and context contribute to or threaten patient hope. Hope of the significant other was defined as an inner force. However, the main concern for caregivers was “hanging on to hope” in spite of eroding effects on hope caused by different factors, for example in the health care system. Also significant others' hope in a palliative care context has been measured, but the results of the studies appear inconsistent. Nurses' reflection in action, affirmation of the patient's worth, working with the patient, considering the patient in a holistic sense were the main hope-engendering interventions generated from this review.

Significance of the research: Hope is important in both living and dying. The majority of the hope research in a palliative context focuses on patient hope and factors influencing patient hope. Research on hope in significant others and nurses in palliative care is scant. More research is needed about the factors threatening patient hope, hope in significant others, and interventions to engender hope in palliative and their outcomes.

Objectives: To review the existing literature of atypical antipsychotics in the treatment of delirium and make recommendations regarding their use in the treatment of delirium.

Methods: I conducted a literature search in Pubmed, Psychlit, and Embase for studies using atypical antipsychotics in the treatment of delirium. In the absence of studies, case reports were used.

Results: Overall 13 studies examined the use of risperidone, olanzapine, and quetiapine, two cases were reported about ziprasidone, and no publication was found using aripiprazole in the treatment of delirium. Among the existing studies were retrospective and prospective, open label studies in addition to one with a double blind design using risperidone. Risperidone, olanzapine, and quetiapine may be all similarly effective in the treatment of delirium, whereas there may be limited efficacy in the use of olanzapine in the hypoactive subtype of delirium in elderly populations, which may generalize to the other atypical antipsychotics. The use of atypical antipsychotics in the treatment of delirium is safe and carries a low burden of side effects.

Significance of results: Although atypical antipsychotics are widely used in the treatment of delirium, well-designed studies do not exist. Among the existing studies, stronger data supports the use of risperidone and olanzapine, and also quetiapine may be considered in the treatment of delirium. Recommendations are made based on the existing data and literature. The need for well-designed studies to validate the use of atypical antipsychotics in the treatment of delirium continues.

Objective: To enhance understanding of the phenomenon of family surrogate decision-making at the end of life (EOL) by means of a systematic review and synthesis of published research reports that address this phenomenon.

Methods: Garrard's (1999) methods for conducting a systematic review of the literature were followed. Fifty-one studies focusing on family decision-making experiences, needs, and processes when assisting a dying family member were selected following electronic database searches and ancestry searches.

Results: In studies using hypothetical scenarios to compare patients' choices and surrogates' predictions of those choices, surrogates demonstrated low to moderate predictive accuracy. Increased accuracy occurred in more extreme scenarios, under conditions of forced choice, and when the surrogate was specifically directed to use substituted judgment. In qualitative explorations of their perspectives, family members voiced their desire to be involved and to accept the moral responsibility attendant to being a surrogate. Quality of communication available with providers significantly influenced family satisfaction with decision-making and EOL care. Group or consensual decision-making involving multiple family members was preferred over individual surrogate decision-making. Surrogates experienced long-term physical and psychological outcomes from being decision-makers.

Significance of results: Functioning as a surrogate decision-maker typically places great moral, emotional, and cognitive demands on the family surrogate. Clinicians can provide improved care to both patients and families with better understanding of surrogates' needs and experiences.

The case of Terri Schiavo resulted in substantial media attention about the use of artificial nutrition and hydration (ANH) especially by percutaneous endoscopic gastrostomy (PEG). In this article, I review ethical and legal principles governing decisions to choose or forgo ANH at the end of life, including issues of autonomy and decision-making capacity, similarities and differences between ANH and other medical treatments, the role of proxies when patients lack decision-making capacity, and the equivalence of withholding and withdrawing treatment. Evidence for palliative or life-sustaining benefits for ANH are reviewed in three disease processes: amyotrophic lateral sclerosis (ALS), cancer, and dementias, including Alzheimer's disease. Although more recent studies suggest a possible palliative role for ANH in ALS and terminal cancer, feeding tubes do not appear to prolong survival or increase comfort in advanced dementia of the Alzheimer's type.

Objective: The nature of sleep disturbances in palliative cancer patients has not been delineated clearly or fully understood due to limited clinical information. The purpose of this study was to describe sleep disturbance patterns, treatments, and communication in an advanced cancer outpatient population attending a pain and symptom control clinic.

Method: One hundred oncology outpatients who came for consultation at a multidisciplinary pain and symptom control clinic were asked and agreed to complete a self-report questionnaire that elicited information about their sleeping habits, sleep concerns, sleep enhancement strategies, and related communication with health care providers.

Results: The majority of participants (72%) reported a wide variety of sleep disturbances, after cancer diagnosis, with the three most frequent elevated symptoms (≥5) being not feeling rested in the morning (72%), difficulty staying asleep (63%), and difficulty falling asleep (40%). Approximately one-fifth of participants (19%) reported having insomnia problems prior to their cancer diagnosis. In a correlational comparison with four other symptoms (i.e., fatigue, pain, anxiety, depression), the three highest correlations were between difficulty falling asleep and fatigue (r = 0.612), early awakening and fatigue (r = 0.596), and difficulty falling asleep and anxiety (r = 0.572). Fifty-three percent of participants reported using a variety of interventions for their sleep problems, the most frequent being sleep medication (37%). Of the 52 participants who reported an elevated level of concern about their sleeping difficulties (≥5), 48 (92%) discussed their concerns with a health care provider. However, of the 20 participants with elevated symptoms (≥5) and low levels of concern (<5), only 7 (35%) communicated their concerns to a health care provider.

Significance of results: The results of this study underline the importance of routine clinical assessments to detect sleep problems and interventions designed specifically to improve the overall sleep quality of cancer patients.

Objective: Little research has been undertaken regarding the psychological impact of cancer on those stricken during the young adult years. Specifically, research on the coping strategies of young adults with cancer is limited.

Method: In this qualitative, Grounded Theory study, we did not set out to examine coping; rather, it emerged as a major phenomenon in the analysis of interview data from 15 young adults with cancer.

Results: These young adults used various coping strategies to come to terms with the cancer diagnosis, management of the illness, its treatment, and treatment sequelae. The coping strategies varied considerably from person to person, depended on the stage(s) of the illness, and were rooted in their precancer lives. We were able to discern a pattern of coping strategies used by most participants. The prevailing goal for all participants was to achieve what they called “normalcy.” For some, this meant major changes in their lives; for others it meant to “pick up” where they had left off before the cancer diagnosis.

Significance of results: To aid the understanding of the issues that influence coping, we have developed a model to illustrate the bidirectional nature and the complexities of the coping strategies as they relate to the phases of the disease and the disease treatment. The model also affirms Folkman and Lazarus' coping theory.