A view from the other side

OBJECTIVE: The environment in our intensive care units (ICUs) often serves the convenience of the staff who work in the ICU, rather than the critically ill patients and their loved ones who are, as a family unit, the objects of our care. OBSERVATIONS: Critically ill patients, especially those with high acuity, require close bedside attention. Continuous monitoring, frequent physical evaluations, invasive procedures, and other demands of bedside care are just some of the processes in the ICU that require heightened attention from ICU clinicians. But the fact that we "have a lot to do" at the bedside of critically ill patients has led to an unfortunate environment in many ICUs, one in which the needs of families are not only considered secondary to the convenience of ICU personnel, but are frequently dismissed as burdensome, unreasonable, and even counter to good-quality patient care. Perhaps this is why there are reports in the literature of family concerns about less than satisfactory interactions with ICU clinicians. The attitude we have toward families is an important part of the care we offer to patients in the ICU, and it can have a profound effect on the health of our patients' families. In palliative care circles, it has long been understood that the "unit of care" is both the patient and the family. Although we are moving in that direction in critical care, many ICUs may not always reflect an appreciation of the therapeutic potential or devastating consequences of the attitudes in the ICU. CONCLUSION: The evolution of our understanding of care for critical illness should include a different approach to families and visiting hours in the ICU. One that balances the need of family members to be with their loved ones at a time of critical illness and the need of ICU clinicians to conduct efficient bedside care.     

Transitioning to end-of-life care in the intensive care unit: a case of unifying divergent desires

Traditionally, the intensive care unit (ICU) has focused on reversal of life-threatening illness. Patients with incurable cancer admitted to the ICU present unique challenges for clinicians when these patients transition to end-of-life (EOL) care. A dimensional analysis of a single case study from a larger 30-case ethnographic study was used to explore the cancer patient's transition to EOL care in the ICU. Family members and clinicians had different expectations of care, which resulted in divergent treatment goals and desires for the patient, a 62-year-old woman with presumed pneumonia and underlying terminal glioblastoma multiforme. The attending physician and palliative care consultant unified family members' and clinicians' divergent goals and desires through a mediating process of probing the family about the patient's wishes. This process unified those involved and brought them to a place of acceptance. This case illustrates the turning point and rationale for the shift to EOL care in the ICU and the important role that communication plays in the transition. Understanding individual and family processes and family members' need for time to adjust to the transition to EOL is an essential element of practice within ICUs that increasingly manage terminally ill cancer patients.     

End-of-life care for the critically ill: A national intensive care unit survey

OBJECTIVE: One in five Americans dies following treatment in an intensive care unit (ICU), and evidence indicates the need to improve end-of-life care for ICU patients. We conducted this study to elicit the views and experiences of ICU directors regarding barriers to optimal end-of-life care and to identify the type, availability, and perceived benefit of specific strategies that may improve this care. DESIGN: Self-administered mail survey. SETTING: Six hundred intensive care units. PARTICIPANTS: A random, nationally representative sample of nursing and physician directors of 600 adult ICUs in the United States. INTERVENTIONS: Mail survey. MEASUREMENTS AND MAIN RESULTS: We asked participants about barriers to end-of-life care (1 = huge to 5 = not at all a barrier), perceived benefit of strategies to improve end-of-life care, and availability of these strategies. From 468 ICUs (78.0% of sample), 590 ICU directors participated (406 nurses [65.1% response] and 184 physicians [31.7% response]). Respondents had a mean of 16.6 yrs (sd 7.6 yrs) of ICU experience. Important barriers to better end-of-life care included patient/family factors, including unrealistic patient/family expectations 2.5 (1.0), inability of patients to participate in discussions 2.7 (0.9), and lack of advance directives 2.9 (1.0); clinician factors, which included insufficient physician training in communication 2.9 (1.1) and competing demands on physicians' time 3.0 (1.1); and institution/ICU factors, such as suboptimal space for family meetings 3.5 (1.2) and lack of a palliative care service 3.4 (1.2). More than 80% of respondents rated 14 of 14 strategies as likely to improve end-of-life care, including trainee role modeling by experienced clinicians, clinician training in communication and symptom management, regular meetings of senior clinicians with families, bereavement programs, and end-of-life care quality monitoring. However, few of these strategies were widely available. CONCLUSIONS: Intensive care unit directors perceive important barriers to optimal end-of-life care but also universally endorse many practical strategies for quality improvement.     

Communication and end-of-life care in the intensive care unit: patient, family, and clinician outcomes

Even though good communication among clinicians, patients, and family members is identified as the most important factor in end-of-life care in ICUs, it is the least accomplished. According to accumulated evidence, communication about end-of-life decisions in ICUs is difficult and flawed. Poor communication leaves clinicians and family members stressed and dissatisfied, as well as patients' wishes neglected. Conflict and anger both among clinicians and between clinicians and family members also result. Physicians and nurses lack communication skills, an essential element to achieve better outcomes at end of life. There is an emerging evidence base that proactive, multidisciplinary strategies such as formal and informal family meetings, daily team consensus procedures, palliative care team case finding, and ethics consultation improve communication about end-of-life decisions. Evidence suggests that improving end-of-life communication in ICUs can improve the quality of care by resulting in earlier transition to palliative care for patients who ultimately do not survive and by increasing family and clinician satisfaction. Both larger, randomized controlled trials and mixed methods designs are needed in future work. In addition, research to improve clinician communication skills and to assess the effects of organizational and unit context and culture on end-of-life outcomes is essential.     

End-of-life care in the intensive care unit: a research agenda

BACKGROUND: The intensive care unit (ICU) represents a unique clinical setting in which mortality is relatively high and the professional culture tends to be one of "rescue therapy" using technological and invasive interventions. For these reasons, the ICU is an important environment for understanding and improving end-of-life care. Although there have been consensus statements and review articles on end-of-life care in the ICU, there is limited evidence on which to base an assessment of best practices for providing high-quality end-of-life care in this setting. OBJECTIVE: To convene a Working Group of experts in critical care, palliative medicine, medical ethics, and medical law to address the question "What research needs to be done to improve end-of-life care to patients in the ICU?" METHODS: Participants were identified for membership in the Working Group by purposive sampling within the fields of critical care medicine and nursing, palliative medicine, and medical ethics; others were chosen to represent social work and hospital chaplains. Through a process of breakout and plenary sessions, the group identified important questions that need to be addressed in the areas of defining the problem, identifying solutions, evaluating solutions, and overcoming barriers. CONCLUSIONS: Outlining unanswered questions on end-of-life care in the ICU is a first step to providing the answers that will allow us to improve care to patients dying in the ICU. These questions also serve to focus clinicians and educators on the important areas for improving quality of care.     

Multicenter study of obstetric admissions to 14 intensive care units in southern England

OBJECTIVES: To identify pregnant and postpartum patients admitted to intensive care units (ICUs), the cause for their admission, and the proportion that might be appropriately managed in a high-dependency environment (HDU) by using an existing database. To estimate the goodness-of-fit for the Simplified Acute Physiology Score II, the Acute Physiology and Chronic Health Evaluation (APACHE) II, and the APACHE III scoring systems in the obstetrical population. DESIGN: Retrospective analysis of demographic, diagnostic, treatment, and severity of illness data. SETTING: Fourteen ICUs in Southern England. PATIENTS: Pregnant or postpartum (<42 days) admissions between January 1, 1994, and December 31, 1996. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We identified 210 patients, constituting 1.84% (210 of 11,385) of all ICU admissions and 0.17% (210 of 122,850) of all deliveries. Most admissions followed postpartum complications (hypertensive disease of pregnancy [39.5%] and major hemorrhage [33.3%]). Seven women were transferred to specialist ICUs. There was considerable variation between ICUs with respect to the number and type of interventions required by patients. Some 35.7% of patients stayed in ICU for <2 days and received no specific ICU interventions; these patients might have been safely managed in an HDU. There were seven maternal deaths (3.3%); fetal mortality rate was 20%. The area under the receiver operator characteristic curve and the standardized mortality ratio were 0.92 (confidence interval [CI], 0.85-0.99) and 0.43 for the Simplified Acute Physiology Score II, 0.94 (CI, 0.86-1.0) and 0.24 for APACHE II, and 0.98 (CI, 0.96-1.0) and 0.43 for APACHE III, respectively. CONCLUSIONS: Existing databases can both identify critically ill obstetrical patients and provide important information about them. Obstetrical ICU admissions often require minimal intervention and are associated with low mortality rates. Many might be more appropriately managed in an HDU. The commonly used severity of illness scoring systems are good discriminators of outcome from intensive care admission in this group but may overestimate mortality rates. Severity of illness scoring systems may require modification in obstetrical patients to adjust for the normal physiologic responses to pregnancy.     

Important clinician information needs about family members in the intensive care unit

PurposeClinicians often lack key information regarding intensive care unit (ICU) families. Our objective was to identify (1) important information for clinicians to know about ICU families when making decisions and (2) important information for families to know about patients from clinicians.Materials and methodsWe identified important information items through a literature review and semistructured interviews. A separate cohort of family members, nurses, and physicians from 2 ICUs in a single institution were asked to prioritize the identified information as necessary for decision making.ResultsWe identified 21 items important for clinicians to know about families and 32 items important for families to know about patients from clinicians. Themes important for clinicians to know about family members included family background, questions, understanding, goals, concerns, well-being, and requests for additional help. Themes important for families to know about the patient included diagnosis, treatments, prognosis, clinical status, schedule, comfort, goals of care, medical team, and family participation.ConclusionsThrough qualitative and quantitative analysis, we identified important information for ICU clinicians to know about family members and for family members to know about patients. The identified information can be used to guide strategies and tools to improve assessment of and communication with families.     

Incorporating palliative care into critical care education: principles, challenges, and opportunities.

OBJECTIVE: To identify the goals and methods for medical education about end-of-life care in the intensive care unit (ICU). DATA SOURCES AND STUDY SELECTION: A status report on palliative care, a summary report of recent research on palliative care education, articles in the medical literature on end-of-life care and critical care, and expert opinion were considered. DATA EXTRACTION: A working group, including specialists in critical care, palliative care, medical ethics, consumer advocacy, and communications, was convened at the "Medical Education for Care Near the End of Life National Consensus Conference." A modified nominal group process was used to develop a consensus. DATA SYNTHESIS: In the ICU, life and death decisions are often made in a crisis mode or in the face of uncertainty, and may necessitate the withholding and withdrawal of life-supporting technologies. Because critical illness often diminishes the capacity of patients to make decisions, clinicians must often make decisions in conjunction with surrogates, rather than with patients. Discontinuity of care can threaten trusting relationships, and cultural diversity can have a particularly powerful impact on choices for care. In the face of these realities, it is possible and appropriate to give compassionate palliative care to dying patients and their families in the ICU. CONCLUSIONS: Teaching care of the dying in the ICU should emphasize the following: a) the goals of care should guide the use of technology; b) understanding of prognostication and treatment withholding and withdrawal is essential; c) effective communication and trusting relationships are crucial to good care; d) cultural differences should be acknowledged and respected; and e) the delivery of excellent palliative care is appropriate and necessary when patients die in the ICU.     

Feasibility of Using Communication Coaching to Teach Palliative Care Clinicians Motivational Interviewing

ContextPalliative care clinicians often have challenging conversations with patients or family caregivers who express ambivalence about goals or feel reluctant to discuss topics. Motivational Interviewing (MI) has tools to address ambivalence and reluctance.ObjectiveThe aim of this pilot study was to test the feasibility, acceptability, and preliminary efficacy of an MI communication coaching intervention.MethodsWe enrolled 22 palliative care clinicians and randomly assigned half to receive communication coaching versus wait-list control. The coaching entailed a lecture on MI, a 1:1 session to discuss applying MI, and audio recording and receiving feedback on four encounters (two separate times). Palliative care clinicians in the wait-list control arm audio-recorded four encounters. Coders blinded to study arm coded MI behaviors. We surveyed patients, caregivers, and clinicians after all audio-recorded encounters to assess perceptions of the encounter. The analyses were performed using a repeated-measures mixed model.ResultsWe found the intervention to be feasible and acceptable. Eighty-six percent of those enrolled completed all study activities including coaching sessions, audio-recording encounters, and completing surveys. Of those in the intervention arm, 88% rated the intervention as helpful and 100% would recommend it to a colleague. Compared to control clinicians, intervention clinicians had higher ratings of their MI skills after intervention, higher objectively rated communication skills, and slightly better burnout scores. We found no arm differences in patient, caregiver, or clinician ratings of satisfaction.ConclusionThis pilot study indicates that coaching palliative care clinicians is feasible and shows promise that coaching can improve palliative care clinician communication.     

Nursing workload in intensive care units: a study using the Therapeutic Intervention Scoring System-28 (TISS-28).

The Therapeutic Intervention Scoring System-28 (TISS-28) is an instrument that has been used to measure severity of illness and nursing workload in intensive care units (ICUs). OBJECTIVES: To characterize the severity of illness and nursing workload using the TISS-28 in 11 ICUs of a university hospital in the city of S?o Paulo, Brazil. METHODS: In a prospective study, data were collected from 271 patients admitted to the ICUs in December 2000 and the patients were followed up for 1 week. RESULTS AND CONCLUSIONS: Most of the patients were males (60.0%) and their mean age was 51(+20.6) years. Surgical treatment (66.8%) and admissions from the operating room were predominant. The mortality rate was 25.0% and the average length of stay was 7.7 (+10.4) days. The mean TISS-28 score was 23 (range: 14-32 points). The lowest mean score was observed for patients from the Burn ICU and the highest mean score was obtained for patients from the Liver Transplant ICU. A change in TISS-28 scores was observed in the same ICU over the 7-day study period. Units differed in terms of severity of illness and nursing workload. Patients who died received a higher TISS-28 score than patients who survived (p=0.00). As the nursing staff are the largest economic investment in an ICU, so measuring nursing workload in different ICUs from different centres can contribute to the estimation of nursing staff required according to the specific demands of the units.     

Use of intensive care-specific interventions in major teaching and other hospitals: a regional comparison

OBJECTIVE: To compare the use of 40 specific medical interventions in intensive care units (ICUs) of major teaching and other hospitals DESIGN: Retrospective cohort study. SETTING: Thirty-eight ICUs in 28 hospitals in a large metropolitan region. PATIENTS: A total of 12,929 consecutive eligible admissions to medical, surgical, neurologic, or mixed medical/surgical ICUs between January 1, and June 30, 1994. MEASUREMENTS: The use of 40 diagnostic and therapeutic interventions during the first 24 hrs of ICU admission were obtained from patient medical records and a weighted intervention score was determined for each patient. Admission severity of illness was measured by using the Acute Physiology and Chronic Health Evaluation III methodology. MAIN RESULTS: Patients at the five teaching hospitals had a greater severity of illness (mean predicted risk of in-hospital death, 15.1%+/-21.9% vs. 11.2%+/-19.0%; p < .01) than patients at the 23 other hospitals. Patients at major teaching hospitals also had higher mean intervention scores (3.5+/-4.9 vs. 2.3+/-3.7; p < .01). Differences in intervention scores persisted after controlling for severity of illness, admission diagnosis, and admission source. However, scores varied among the major teaching hospitals. When examined individually, only three of the five major teaching hospitals had higher (p < .05) interventions scores, compared with other hospitals, whereas one had a lower (p < .05) intervention score. CONCLUSIONS: Patients in ICUs at major teaching hospitals were, in aggregate, more likely to receive diagnostic and therapeutic interventions than patients at other hospitals. Variation among major teaching hospitals suggests that factors other than teaching status also affect the use of these interventions.     

Nursing interventions in palliative care in the intensive care unit: A systematic review

ContextPatients in palliative care are found in different places where care is provided, including the intensive care environment with important role of the nursing staff.ObjectiveThe aim of this systematic review was to answer the following question: which nursing interventions are aimed to the palliative care patients who are in the intensive care unit (ICU).Data sourcesUS National Library of Medicine (PUBMED), Virtual Health Library (BVS), SciELO, The Cochrane Library (Cochrane) and Lilacs databases were used.Data extractionAfter applying inclusion and exclusion criteria in accordance with the PRISMA method, a total of 36 entries published between 2010 and 2020 were used.Data analysisThe records extracted were analyzed from a qualitative approach, so no statistical analysis was carried out.ResultsThe findings demonstrated that the interventions that focus on promoting the patient's autonomy and respect their needs on ICU involves effective communication, promoting shared decision with patient and family, individualize care for each patient including the family on the daily care and decisions, maintaining basic nursing care as hygiene and comfort and encouraging self-care, as well as the involvement of nursing palliative care specialists the care is important. Other interventions included promoting a continuing education program for the nursing staff and other professionals involved in caring for patients in palliative care at ICU.ConclusionThis review highlighted the need for specific nursing interventions aimed at palliative care patients at ICU to promote patient autonomy and the focus on patient needs, always sharing decisions with the patient and family. However, it showed that there is a need for the continuous training of the nursing staff because factors such as the nurses’ lack of technical-scientific knowledge and, concomitantly, the absence of a standardized and specific intervention model linked to a bureaucratic system, make it difficult to carry out a specialized care for this type of patient.     

The relationship between nursing skill mix and severity of illness of patients admitted in Australian and New Zealand intensive care units

BackgroundCritically ill patients in the intensive care environment require an appropriate nursing workforce to improve quality of care and patient outcomes. However, limited information exists as to the relationship between severity of illness and nursing skill mix in the intensive care.ObjectiveThe aim of this study was to describe the variation in nursing skill mix across different hospital types and to determine if this was associated with severity of illness of critically ill patients admitted to adult intensive care units (ICUs) in Australia and New Zealand.Design & SettingA retrospective cohort study using the Australia and New Zealand Intensive Care Society Adult Patient Database (to provide information on patient demographics, severity of illness, and outcome) and the Critical Care Resources Registry (to provide information on annual nursing staffing levels and hospital type) from July 2014 to June 2020. Four hospital types (metropolitan, private, rural/regional, and tertiary) and three patient groups (elective surgical, emergency surgical, and medical) were examined.Main outcome measureThe main outcome measure was the proportion of critical care specialist registered nurses (RNs) expressed as a percentage of the full-time equivalent (FTE) of total RNs working within each ICU each year, as reported annually to the Critical Care Resources Registry.ResultsData were examined for 184 ICUs in Australia and New Zealand. During the 6-year study period, 770 747 patients were admitted to these ICUs. Across Australia and New Zealand, the median percentage of registered nursing FTE with a critical care qualification for each ICU (n = 184) was 59.1% (interquartile range [IQR] = 48.9–71.6). The percentage FTE of critical care specialist RNs was highest in private [63.7% (IQR = 52.6–78.2)] and tertiary ICUs [58.1% (IQR = 51.2–70.2)], followed by metropolitan ICUs [56.0% (IQR = 44.5–68.9)] with the lowest in rural/regional hospitals [55.9% (IQR = 44.9–70.0)]. In ICUs with higher percentage FTE of critical care specialist RNs, patients had higher severity of illness, most notably in tertiary and private ICUs. This relationship was persistent across all hospital types when examining subgroups of emergency surgical and medical patients and in multivariable analysis after adjusting for the type of hospital and relative percentage of each diagnostic group.ConclusionsIn Australian and New Zealand ICUs, the highest acuity patients are cared for by nursing teams with the highest percentage FTE of critical care specialist RNs. The Australian and New Zealand healthcare system has a critical care nursing workforce which scales to meet the acuity of ICU patients across Australia and New Zealand.     

Day of the week of intensive care admission and patient outcomes: a multisite regional evaluation

BACKGROUND: Relationships between day of the week of admission to hospitals and hospital outcomes have been poorly studied. Intensive care units (ICUs) appear to be uniquely suited to examine such a question given the unpredictability of ICU admissions and the clinical instability of their patient populations. METHODS: This retrospective cohort study included 156,136 patients admitted to 38 ICUs in 28 hospitals in a large Midwestern metropolitan area during 1991 to 1997. Demographic and clinical data were collected from patients' medical records and used in multivariable risk-adjustment models that examined the risk for in-hospital death and ICU length of stay. RESULTS: The adjusted odds of in-hospital death were 9% higher (OR 1.09; 95% CI, 1.04-1.15; P <0.001) for weekend admissions (Saturday or Sunday) than in patients admitted midweek (Tuesday through Thursday). However, the adjusted odds of death were also higher (P <0.001) for patients admitted on Monday (OR 1.09) or Friday (OR 1.08). Findings were generally similar in analyses stratified by admission type (medical vs. surgical), hospital teaching status, and illness severity. Adjusted ICU length of stay was 4% longer (P <0.001) for weekend or Friday admissions, compared with midweek admissions. CONCLUSIONS: Patients admitted to an ICU on the weekend have a modestly higher risk for death and ICU length of stay. However, the similar risk for death in patients admitted on Friday and Monday suggests that "weekend effects" may be more related to unmeasured severity of illness and/or selection bias than to differences in quality of care.     

The effect of a family support intervention on physician, nurse, and family perceptions of care in the surgical, neurological, and medical intensive care units

Many patients in the intensive care unit (ICU) have predictable medical and discharge outcomes, but some trajectories are marked with medical uncertainty. Stressed family-surrogates receive multiple medical updates from a variety of personnel. These circumstances can lead to confusion, which may result in conflicts and dissatisfaction with care. This study examined the effects of adding a family support coordinator to the surgical, neurological, and medical ICUs on family, physician, and nurse satisfaction with communication and care. A quasi-experimental design was conducted in 2 sequential phases (baseline and intervention). The data sources were 2 surveys: (1) Family Satisfaction Survey and (2) Nurse and Physician Perception and Satisfaction Survey. Family Satisfaction Survey data, a combined data set, were collected in the 3 ICUs. Nurse and Physician Perception and Satisfaction Survey data were collected from the attending physicians and critical care nurses in the medical and neurological ICUs. Results show that family ratings of satisfaction with ICU team communication and care generally increased as a result of the intervention. Overall, physician and nurse perceptions of communication and care did not change as a result of the intervention.     

The epidemiology of critical illness in the elderly

A substantial proportion of patients admitted to intensive care units (ICUs) are elderly patients. Based upon population growth, patient preference, and current physician practice, the number of elderly patients who receive critical care services is likely to increase substantially over the next 10 to 20 years. Numerous studies have shown that survival from critical illness is lower in elderly patients; however, after adjusting for factors such as illness severity, comorbid diseases, and functional status, chronologic age accounts for very little explanatory power for survival from critical illness. Elderly survivors of critical illness often have significant functional limitations, but their perceived quality of life is usually better than that of younger survivors of critical illness. Elderly patients frequently receive less aggressive care in the ICU and probably consume a lower relative proportion of ICU resources than younger patients. However, this does not necessarily result in worse outcomes.     

Oncologic Emergencies: Palliative Care in the Emergency Department Setting

BackgroundPalliative care is an essential component of emergency medicine, as many patients with terminal illness will present to the emergency department (ED) for symptomatic management at the end of life (EOL).ObjectiveThis narrative review evaluates palliative care in the ED, with a focus on the literature behind management of EOL symptoms, especially dyspnea and cancer-related pain.DiscussionAs the population ages, increasing numbers of patients present to the ED with severe EOL symptoms. An understanding of the role of palliative care in the ED is crucial to effectively communicating with these patients to determine their goals and provide medical care in line with their wishes. Beneficence, nonmaleficence, and patient autonomy are essential components of palliative care. Patients without medical decision-making capacity may have an advance directive, do not resuscitate or do not intubate order, or Portable Medical Orders for Life-Sustaining Treatment available to assist clinicians. Effective and empathetic communication with patients and families is vital to EOL care discussions. Two of the most common and distressing symptoms at the EOL are dyspnea and pain. The most effective treatment of EOL dyspnea is opioids, with literature showing little efficacy for other therapies. The most effective treatment for cancer-related pain is opioids, with expeditious pain control achievable with a rapid fentanyl titration. It is also important to address nausea, vomiting, and secretions, as these are common at the EOL.ConclusionsEmergency clinicians play a vital role in EOL patient care. Clear, empathetic communication and treatment of EOL symptoms are essential.     

A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia

Aim. This paper considers the challenges of delivering effective palliative care to older people with dementia and the possible strategies to overcome barriers to end-of-life care in these patients. Background. In UK alone, approximately 100 000 people with dementia die each year and as the number of older people increases, dementia is set to become even more prevalent. Dementia is a progressive terminal illness for which there is currently no cure. Patients dying with dementia have significant health-care needs and in recent years it has been recognised that palliative care should be made available to everyone regardless of diagnosis, as this improves comfort and quality of life. Despite this, patients dying with dementia are often still not given access to palliative care services. Method. A review of English language literature published after 1996 to the present day relating to older people with dementia during the terminal phase of their illness. Results. Twenty-nine articles met inclusion criteria for the review. Most originated from North America and UK and were mostly quantitative in nature. Four key themes were identified: difficulties associated with diagnosing the terminal phase of the illness (prognostication); issues relating to communication; medical interventions; and the appropriateness of palliative care intervention. Conclusions. This review reinforces the importance of providing appropriate palliative care to individuals suffering from end-stage dementia and identifies some of the barriers to extending such specialist palliative care provision. Relevance to practice. There is an urgent need to improve palliative care provision for older people with end-stage dementia and, in addition, more research is required on the needs of patients entering the terminal phase of dementia to assist the allocation of appropriate resources and training to ensure quality and equality in the provision of end-of-life care.