American Journal of Hospice and Palliative Medicine®

The number of people suffering with dementia is increasing in the general population and the trend is projected to continue as people live longer, especially in countries with developed economies. The most common cause of dementia (among the many other causes) is Alzheimer’s dementia, which is considered a terminal illness. The disease could eventually lead to death, or death could occur as a consequence of co-morbid physical complications. The problem of end of life (EOL) care for patients suffering from dementia though spoken of and written about, does not get the attention and system support as for example patients suffering from cancer receive. Many reasons have been advanced for the current state of affairs where EOL issues for patients suffering from dementia are concerned. This article attempts to revisit the issues, and the reasons, that may contribute to this. Some guidelines on palliative management in cases of patients suffering from severe dementia exist; the evidence base for these guidelines though is relatively weak. The ethical and legal issues that may influence or impact on the decision to initiate the palliative care pathway in the management of EOL issues for dementia patients in the terminal or end stage of the illness is highlighted. Initiatives by the department of health in England and Wales, and other bodies with interest in dementia issues and palliative care in the United Kingdom to ensure good and acceptable EOL pathways for patients with dementia are mentioned.

The development and clinical trial of a 5-session behavioral intervention for complicated bereavement (CB) is presented. We conceptualized CB in terms of Major Depression (MDD) and Post-traumatic Stress Disorder (PTSD) and consequently applied treatment components of Behavioral Activation and Therapeutic Exposure (BA-TE). In order to assure standardization of treatment, control costs, and engage patients, a multi-media, multi-context format was adopted to address avoidance and withdrawal behaviors conceptualized as central pathogenic responses in CB. Participants (N = 26) were assessed before and after BA-TE treatment via structured clinical interview and standardized questionnaires in terms of PTSD, MDD, CB, and health concerns. The number of days since the death of the loved one was widely variable and served as a covariate for all outcome analyses. ANCOVAS revealed statistically significant improvement, irrespective of how many days since death had elapsed prior to initiation of intervention, on structured interviews and self-report measures for most outcome variables.

This report provides nationally representative data on documentation of advance directives (ADs) among home health (HH) and hospice patients. Advance directives were recorded for 29% of HH patients and 90% of hospice discharges. Among HH patients, increasing age and use of assistive devices were associated with greater odds of having an AD, while being Hispanic or black (relative to white) and enrolled in Medicaid decreased the odds of having ADs. Among hospice discharges, being enrolled in Medicare and having 4 or 5 activities of daily living (ADL) limitations were associated with higher odds of ADs while depression, use of emergency services, and being black (relative to White) were associated with lower odds. Even after adjustment for potentially confounding factors, racial differences persist in AD documentation in both care settings.

We explored family involvement in decisions about life support interventions in the intensive care unit study using a critical incident technique to focus on specific case exemplars contributed by participants. A total of 6 family members and 9 health care professionals were interviewed. Participants described 2 options (life support or comfort care) and values associated with options: maintaining quality of life, surviving critical illness, minimizing pain and suffering, not being attached to machines, needing adjustment time, and judicious health care resource use. Barriers to involvement included not being offered alternative options; no specific trigger to initiate decision making; dominant influence of professionals’ values; and families lacking understandable information. Family members are unlikely to engage in decision making unless professionals identify the decision and address other barriers to family involvement.

Background: End-of-life care is deemed to be poor in the United States – particularly in large teaching hospitals. Via a brief survey, we examined satisfaction with end-of-life care for those patients who died in our academic medical center from provider and family perspectives. Methods: To assess the correlation between overall satisfaction between providers (attending, housestaff, and nurses) as well as family members for decedents who died in our hospital, we conducted a satisfaction survey regarding care in the last three days of life. The nine item survey was administered within 1 week of the patient s death to care providers and approximately 8 to 12 weeks to next of kin. Results: There were 166 deaths examined over the four month study period. Overall satisfaction with care was 3.02 out of 4.0, and differed by respondent group (p= 0.035). Correlation between respondents was very low (range 0.02 to 0.51). The least discordance was between residents and interns (0.5), who had the lowest level of satisfaction (2.72). Housestaff and attendings had the lowest overall correlation in mean satisfaction scores (0.05). Most providers knew their patients for 24 hours or less. Conclusions: Overall satisfaction was high, but there was discordance among different providers. Continuity of care was limited. Age and location of death alone did not significantly affect satisfaction with end-of-life care. Implications of this type of research for improving end of life care at academic centers are discussed.

To evaluate the relationship between pain and quality of life (QoL) in patients newly admitted to Wuhan Hospice Center, China. A total of 1,634 patients were analyzed in this retrospective study. A Numerical Rating Scale and Chinese-QoL instrument were used to assess pain score and QoL, respectively. Most patients experienced moderate to severe pain, which significantly impaired QoL. The pain was significantly correlated with appetite, mood, sleep, fatigue, pain intensity, daily activity, side effect, general appearance, and support from family. But there was no correlation with support from society, understanding of cancer, or attitude toward treatment. In our study, the relationship between pain and QoL was found to be reciprocal. The staff can offer a multidisciplinary care perspective for improving hospice care for this special group of population.

Background: In terminally ill cancer patients approaching the dying phase, liberal use of antimicrobials is often viewed by palliative care experts as irrational. No previous reports have reviewed current antimicrobial use in palliative care settings in Saudi Arabia. Objective: The objective of this study was to explore the pattern of antimicrobial use in a tertiary palliative care unit (TPCU) during the last week of patients’ life. Methods: Medical records of all patients who died in the TPCU over a 14-month period were reviewed for demographics as well as the frequency and rationale of antimicrobial use during the patients’ last week of life. Information on antimicrobial use was obtained from a computerized pharmacy database. Results: Of 138 patients who died with advanced cancer in the TPCU, 87 (63%) were on one or more antimicrobials during their last week of life. Antibiotics were more frequently used as compared to antifungal and antiviral agents, 64 (46.4%); 45 (32.6%); and 2 (1.5%), respectively. About one third (31.3%) of patients who received antibiotics during their last week of life were prescribed more than one antibiotic. Antimicrobials were mostly given systemically (79%) rather than topically (21%). The most common rationales for antimicrobial prescribing were oral thrush in 36 patients (25.4%), wound care in 29 patients (20.4%), and on empirical basis in 29 patients (20.4%). Conclusions: The current practice of antimicrobial prescribing, especially for patients who are eminently dying, may need to be reviewed. Initiation of antimicrobial treatment in this group of patients should be based on clear treatment goals and desired outcomes, considering views of patients and families.

Adjuvant analgesics (co-analgesics) are medications whose primary indication is the management of a medical condition with secondary effects of analgesia. Cancer pain is multifactorial and often involves inflammatory, nociceptive, and neuropathic pain subtypes. Adjuvant analgesics used in conjunction with opioids have been found to be beneficial in the management of many cancer pain syndromes; however, they are currently underutilized. Antidepressants, anticonvulsants, local anesthetics, topical agents, steroids, bisphosphonates, and calcitonin are all adjuvants which have been shown to be effective in the management of cancer pain syndromes. When utilizing analgesic adjuvants in the treatment of cancer pain, providers must take into account the particular side effect profile of the medication. Ideally, adjuvant analgesics will be initiated at lower dosages and escalated as tolerated until efficacy or adverse effects are encountered.