Specialist Palliative Care For Patients Research Articles

Criteria That Promote Timely Referral to Specialist Palliative Care for Patients With Advanced Heart Failure

Criteria That Promote Timely Referral to Specialist Palliative Care for Patients With Advanced Heart Failure

Improving Access to Specialist Palliative Care for Patients With Catastrophic Strokes Using Best Practice Advisory- a Feasibility Study.

The American Heart Association and American Stroke Association (AHA/ASA) strongly recommend specialty palliative care (PC) for all patients hospitalized with life-threatening or life-altering strokes to provide expert symptom management, improve communication, promote shared decision-making and relieve suffering. We piloted an intervention to remind physicians about high PC needs of their patients admitted with catastrophic stroke. We worked with colleagues from medical informatics to create a "Best Practice Advisory" (BPA) to recommend a goals-of-care conversation and PC consultation for patients with a National Institutes of Health Stroke Scale (NIHSS) score of 20 or more in our electronic medical record (Epic). We evaluated the impact of this BPA, after implementation, on the number and timing of PC consults and reviewed barriers to this system change. The BPA was operational in Jan 2019. Data analysis showed that it fired for all patients with an entered NIHSS score of ≥20. Though a large portion of the BPAs (more than 90%) were acknowledged without documented reason (after selecting "do not order"), PC consultations per 100 patients with triggered BPA increased from the first year of implementation (11.7 in 2019) to the next 2 years (20.7 in 2020, 15.6 in 2021). Also, the providers learned to manage BPA alerts better resulting in more than 30% reduction in the number of BPA alerts fired for each patient encounter in 2020-2021 compared to 2019.

Effects of Specialist Palliative Care for Patients Undergoing Major Abdominal Surgery for Cancer

Specialist palliative care benefits patients undergoing medical treatment of cancer; however, data are lacking on whether patients undergoing surgery for cancer similarly benefit from specialist palliative care. To determine the effect of a specialist palliative care intervention on patients undergoing surgery for cure or durable control of cancer. This was a single-center randomized clinical trial conducted from March 1, 2018, to October 28, 2021. Patients scheduled for specified intra-abdominal cancer operations were recruited from an academic urban referral center in the Southeastern US. Preoperative consultation with palliative care specialists and postoperative inpatient and outpatient palliative care follow-up for 90 days. The prespecified primary end point was physical and functional quality of life (QoL) at postoperative day (POD) 90, measured by the Functional Assessment of Cancer Therapy-General (FACT-G) Trial Outcome Index (TOI), which is scored on a range of 0 to 56 with higher scores representing higher physical and functional QoL. Prespecified secondary end points included overall QoL at POD 90 measured by FACT-G, days alive at home until POD 90, and 1-year overall survival. Multivariable proportional odds logistic regression and Cox proportional hazards regression models were used to test the hypothesis that the intervention improved each of these end points relative to usual care in an intention-to-treat analysis. A total of 235 eligible patients (median [IQR] age, 65.0 [56.8-71.1] years; 141 male [60.0%]) were randomly assigned to the intervention or usual care group in a 1:1 ratio. Specialist palliative care was received by 114 patients (97%) in the intervention group and 1 patient (1%) in the usual care group. Adjusted median scores on the FACT-G TOI measure of physical and functional QoL did not differ between groups (intervention score, 46.77; 95% CI, 44.18-49.04; usual care score, 46.23; 95% CI, 43.08-48.14; P = .46). Intervention vs usual care group odds ratio (OR) was 1.17 (95% CI, 0.77-1.80). Palliative care did not improve overall QoL measured by the FACT-G score (intervention vs usual care OR, 1.09; 95% CI, 0.75-1.58), days alive at home (OR, 0.87; 95% CI, 0.69-1.11), or 1-year overall survival (hazard ratio, 0.97; 95% CI, 0.50-1.88). This randomized clinical trial showed no evidence that early specialist palliative care improves the QoL of patients undergoing nonpalliative cancer operations. ClinicalTrials.gov Identifier: NCT03436290.

Symptom Management and Support in Dying Patients with Cancer and Coronavirus Disease-19-A Register-Based Study.

Little is known to what extent access to specialist palliative care (SPC) for cancer patients dying with coronavirus disease-2019 (COVID-19) affects the occurrence of breakthrough symptoms, symptom relief, and overall care, compared to hospital deaths. Our aim was to include patients with both COVID-19 and cancer and compare those dying in hospitals with those dying in SPC with reference to the quality of end-of-life care. Patients with both cancer and COVID-19 who died in hospitals (n = 430) and within SPC (n = 384) were identified from the Swedish Register of Palliative Care. The hospital and SPC groups were compared regarding the quality of end-of-life care, including the occurrence of 6 breakthrough symptoms during the last week in life, symptom relief, end-of-life care decisions, information, support, and human presence at death. Breakthrough of breathlessness was more common in the hospital patients compared to the SPC patients (61% and 39%, respectively; p < .001), while pain was less common (65% and 78%, respectively; p < .001). Breakthrough of nausea, anxiety, respiratory secretions, or confusion did not differ. All 6 symptoms, except for confusion, were more often completely relieved in SPC (p = .014 to p < .001 in different comparisons). In SPC, a documented decision about the goal being end-of-life care and information about this were more common than in hospitals (p < .001). Also, to have family members present at the time of death and for family members to be offered a follow-up talk afterward was more common in SPC (p < .001). More systematic palliative care routines may be an important factor for better symptom control and higher quality of end-of-life care in hospitals.

Criteria for Referral of Patients With Advanced Heart Failure for Specialized Palliative Care

BackgroundPatients with advanced heart failure have substantial supportive care needs. Specialist palliative care can be beneficial, but it is unclear who is most appropriate for referral and when patients should be referred. ObjectivesWe conducted a Delphi study of international experts to identify consensus referral criteria for specialist palliative care for patients with advanced heart failure. MethodsClinicians from 5 continents with expertise in the integration of cardiology and palliative care were asked to rate 34 disease-based, 24 needs-based, and 9 time-based criteria over 3 rounds. Consensus was defined a priori as ≥70% agreement. A criterion was coded as major if the experts endorsed that meeting that criterion alone was adequate to justify a referral. ResultsThe response rate was 44 of 46 (96%), 41 of 46 (89%), and 43 of 46 (93%) in the first, second, and third rounds, respectively. Panelists reached consensus on 25 major criteria for specialist palliative care referral. The 25 major criteria were categorized under 6 topics, including “advanced/refractory heart failure, comorbidities, and complications” (eg, cardiac cachexia, cardiorenal syndrome) (n = 8), “advanced heart failure therapies” (eg, chronic inotropes, precardiac transplant) (n = 4), “hospital utilization” (eg, emergency room visits, hospitalization) (n = 2), “prognostic estimate” (n = 1), “symptom burden/distress” (eg, severe physical/emotional/spiritual distress) (n = 6), and “decision making/social support” (eg, goals-of-care discussions) (n = 4). The majority (68%) of major criteria had ≥90% agreement. ConclusionsInternational experts reached consensus on a large number of criteria for referral to specialist palliative care. With further validation, these criteria may be useful for standardizing palliative care access in the inpatient and/or outpatient settings.

Health professionals\u2019 perceptions of palliative care for end-stage cardiac and respiratory conditions: a qualitative interview study

BackgroundEnd-stage cardiac and respiratory diseases are common in the UK. People with these end-stage conditions experience similar, or even worse, symptomatic suffering to cancer patients but are less likely to receive specialist palliative care services. The objective of this study is to explore health professional perceptions and current practices in relation to specialist palliative care for patients with end-stage cardiac and respiratory disease.MethodsQualitative study using in-depth interviews with health professionals, audio recorded and transcribed verbatim for thematic analysis. The study was conducted with doctors and nurses from cardiology, respiratory, and palliative care specialities in the UK. The participants had to be involved clinically in providing care to people with end-stage cardiac or respiratory diseases.ResultsA total of 16 health professionals participated (5 cardiology, 5 respiratory, and 6 palliative care). Participants reported variable disease trajectories in these diseases making deciding on timing of palliative care involvement difficult. This was complicated by lack of advance care planning discussions, attributed to poor communication, and lack of health professional time and confidence. Participants reported poor interdepartmental education and limited specialist palliative care involvement in multidisciplinary teams.ConclusionsPalliative care for end-stage cardiac and respiratory diseases needs more attention in research and practice. Better integration of advance care planning discussions and early patient education/professional awareness are needed to enable timely referral to palliative care. Moreover, increased interdepartmental working for health professionals via joint educational and clinical meetings is perceived as likely to support earlier and increased referral to specialist palliative care services.

Referral criteria to specialist palliative care for patients with dementia: A systematic review.

Patients with dementia often have significant symptom burden and a progressive course of functional deterioration. Specialist palliative care referral may be helpful, but it is unclear who and when patients should be referred. We conducted a systematic review of the literature to examine referral criteria for palliative care among patients with dementia. We searched Ovid MEDLINE, Ovid Embase, Ovid PsycInfo, Cochrane Library, PubMed, and CINAHL databases for articles from inception to December 3, 2019, related to specialist palliative care referral for dementia. Two investigators independently reviewed the citations for inclusion, extracted the referral criteria, and categorized them thematically. Of the 1788 citations, 59 articles were included in the final sample. We identified 13 categories of referral criteria, including 6 disease-based and 7 needs-based criteria. The most commonly discussed criterion was "dementia stage" (n=43, 73%), followed by "new diagnosis of dementia" (n=17, 29%), "medical complications of dementia" (n=12, 20%), "prognosis" (n=11, 19%), and "physical symptoms" (n=11, 19%). Under dementia stage, 37/44 (84%) articles recommended a palliative care referral for advanced dementia. Pneumonia (n=6, 10%), fall/fracture (n=4, 7%), and decubitus ulcers (n=4, 7%) were most commonly discussed complications to trigger a referral. Under prognosis, the time frame for referral varied from <2 years of life expectancy to <6months. 3 (5%) of articles recommended "surprise question" as a potential trigger. This systematic review highlighted the lack of consensus regarding referral criteria for palliative care in patients with dementia and the need to identify timely triggers to standardize referral.

Improving Access to Specialist Palliative Care for Patients with Catastrophic Strokes: A Quality Improvement Project to Trigger Inpatient Palliative Care Consultations (QI730)

1.Describe how standardized and targeted use of the National Institutes of Health Stroke Scale (NIHSS) can help identify patients and families who need palliative care.2.Describe use of an automatic “best practice advisory” in the electronic medical record as a system-based approach to promote earlier palliative care consults for severe stroke patients. The American Stroke Association strongly recommends palliative care for patients hospitalized with catastrophic strokes to improve shared decision-making and relieve suffering. An automatic trigger to consider a consult for these patients may improve access to palliative care. The National Institutes of Health Stroke Scale (NIHSS) is a good predictor of short- and long-term outcomes and high scores (>= 20) are associated with poorer prognosis. Evaluate the impact of a “Best Practice Advisory” (BPA) via the electronic medical record (EMR) to trigger a palliative care consult in stroke patients with high NIHSS scores. We worked with leadership in neurology and medical informatics to create a BPA in our EMR (Epic) to trigger an alert for palliative care consult for patients with NIHSS scores of 20 or more. When clinicians open these patients’ charts, the BPA “fires” and invites them to “order” or “do not order” a consult. If clinicians do not order a consult, they are invited to select either “family declines” or “acknowledged;” if they select “acknowledged,” they must enter a reason in order for the BPA to disappear. If no reason is entered, the BPA resets for an hour and fires again with same options when clinicians re-enter the chart. Review of all BPA fires since January 2019 revealed more than half were cancelled or overridden by the clinicians involved. The number of palliative care consults for patients with strokes did not increase in 2019 (76); however, showed an upward trend in first 6 months of 2020 (65). Our project demonstrates a feasible system-based approach to proactively recommend palliative care consults in high-need stroke patients, but highlights that authentic buy-in of physicians and education are paramount in addition to an EMR trigger.

Palliative Care for Patients with End-Stage Liver Disease on the Liver Transplant Waiting List: An International Systematic Review.

People with end-stage liver disease on the liver transplant waiting list have high symptom burden, which can successfully be addressed by specialist palliative care. Potential tensions with the perceived curative nature of liver transplant make delivering specialist palliative care challenging. This systematic review seeks to establish what is known on the impact of specialist palliative care for patients on liver transplant waiting lists, healthcare professionals' perspectives of providing specialist palliative care for this population, and uptake of advance care planning (ACP). Medline, Embase, and CINAHL were searched to May 5, 2020. Qualitative and quantitative findings were grouped together according to main relevant themes. Eight studies of mixed quality and mainly quantitative, were identified. Findings suggest early palliative care intervention improve patients' symptoms and prompt ACP conversations, but patients on the waiting list receive limited palliative care input. Liver physicians' lack of clarity on referral criteria and liver transplant patients' concerns of being abandoned, were reasons for reluctance to refer to specialist palliative care. They felt referral to specialist palliative care is appropriate only for patients receiving hospice or end of life care. Uptake and understanding of ACP and goals of care designation by patients is poor. This review found evidence of benefit of specialist palliative care for patients on liver transplant waiting lists, but found in a limited understanding of their role. Evidence is limited to studies from North America. Future research is needed to understand better how palliative care could be provided into this clinical environment.

Prevalence of hyponatremia in inpatients with incurable and life-limiting diseases and its association with physical symptoms-a retrospective descriptive study.

Hyponatremia is a common electrolyte abnormality seen in hospitalized patients. It may cause a variety of symptoms and is associated with longer hospitalizations and higher mortality. However, to date, only little is known about the extent of hyponatremia in patients with incurable diseases and whether it is associated with physical symptoms in this patient group. This study aims to describe the prevalence of hyponatremia, associated symptoms, and symptom intensity in inpatients with hyponatremia receiving specialist palliative care (SPC). This is a retrospective study. Demographic and clinical data as well as symptoms, scored symptom intensity, and laboratory values were collected. All inpatients of a large German University Hospital receiving SPC in 2013 with documented sodium values were included. In 2013, 789 inpatients received SPC of which 710 had documented sodium values. The prevalence of hyponatremia was 38.7% (275/710). A mild degree showed 220 (31,0%), 44 (6.2%) had a moderate, and 11 (1.6%) a severe form. Hyponatremia patients experienced significantly more symptoms than normonatremic patients (mean=7.71 vs 6.63; p<0.001). Breathlessness, depressiveness, nausea, vomiting, poor appetite, constipation, and weakness were significantly more frequent in patients with hyponatremia. Furthermore, hyponatremia severity was associated with higher symptom intensity (mean=13.29 vs 11.28; p<0.001). More than one third of all SPC patients showed a hyponatremia, and the hyponatremia grade was associated with symptom burden and symptom intensity. A prospective analysis is needed to further examine this association and the possible influence of hyponatremia correction on symptom burden reduction.

The provision of generalist and specialist palliative care for patients with non-malignant respiratory disease in the North and Republic of Ireland: a qualitative study

BackgroundPrevious research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland.MethodsQualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from 2 rural and 2 urban sites on the Island of Ireland. Data collection consisted of semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3–18 months previously; and 4 focus groups with healthcare professionals. Data analysed using thematic analysis.ResultsFindings highlighted the lack of a clear model of holistic care delivery for patients with non-malignant respiratory disease and illuminated the varying levels of palliative care provision this client group experienced. Additionally, ambiguity amongst healthcare professionals regarding prognostication illuminated the importance of the provision of palliative care being based on patient need, not prognosis. This research developed a potential model of palliative care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory of non-malignant respiratory disease, whilst also encouraging the involvement of specialist palliative care for complex symptom management.ConclusionThis research provides an important insight into a potential model of palliative care for people with non-malignant respiratory disease, inclusive of bronchiectasis. However, the feasibility of integrating this model into clinical practice requires further exploration.

A service evaluation of an integrated model of palliative care of cystic fibrosis

Background: Patients with advanced cystic fibrosis have severe symptoms with a complex trajectory of exacerbations and recovery. They are often awaiting lung transplantation, and many die without receiving specialist palliative care. Aim: We introduced an integrated model whereby palliative specialists joined the cystic fibrosis team to provide palliative care in parallel with standard care. Design: A service evaluation of this model of care was undertaken in a prospective case series documenting symptoms and outcomes, the views of the cystic fibrosis team and the experience of the palliative specialists. Setting/participants: Over 3 years, 28 (10%) of 282 patients attending the cystic fibrosis centre had specialist palliative care. Results: They had advanced lung disease (mean forced expiratory volume in 1 s (FEV1) = 0.86 L (25% predicted)), and 17 died: 6 were on a transplant waiting list at death; 10 were unsuitable and 1 died post transplantation. All who died over these 3 years had specialist palliative care. Four patients had successful transplants. Assessment showed a high prevalence of breathlessness, cough, pain, vomiting and fatigue, with a significant impact on daily life. The cystic fibrosis team rated this model of care highly, felt that palliative care should be members of the team, and thought that patients had found it helpful. The palliative specialists gained knowledge of cystic fibrosis, found it beneficial to meet patients earlier in the disease, and identified unmet needs in managing bereavement and the effects of deaths on other patients with cystic fibrosis. Conclusion: This model has been successful in overcoming the difficulties in access to specialist palliative care for patients with cystic fibrosis.

Meanings and experiential outcomes of bodily care in a specialist palliative context.

The objective of this study was to enhance the depth of existing knowledge about meanings and experiential outcomes of bodily care in the context of an inpatient specialist palliative setting. Interpretative phenomenology was chosen as the study sought to explore individuals' lived experiences related to bodily care. Nine participants (five women, four men) of various ages and with various metastasized cancers and bodily-care needs, all from one specialist palliative care ward, participated. Data were collected with repeated narrative interviews and supplementary participating observations. Analysis was informed by van Manen's approach. The following meanings and experiential outcomes of bodily care were revealed by our study: maintaining and losing body capability, breaching borders of bodily integrity, being comforted and relieved in bodily-care situations, and being left in distress with unmet needs. These meanings overlap and shape the nature of each other and involve comforting and distressing experiences related to what can be described as conditional dimensions: the particular situation, one's own experiences of the body, and healthcare professionals' approaches. The results, based on specialist palliative care patients' experiences, outline the meanings and outcomes that relate to the quintessence and complexity of palliative care, deriving from dying persons' blend of both basic and symptom-oriented bodily-care needs. Moreover, the results outline how these two dimensions of care equally influence whether comfort and well-being are facilitated or not. Considering this, specialist palliative care may consider how to best integrate and acknowledge the value of skilled basic nursing care as part of and complementary to expertise in symptom relief during the trajectories of illness and dying.

POST DISCHARGE TELEPHONE CALL TO PALLIATIVE PATIENTS

BackgroundThe transition home for Specialist Palliative Care (SPC) patients is often complex; requiring multiple medications, equipment, healthcare agency support. Many patients go home to die which causes additional stress for...

INCREASING ACCESS TO SPECIALIST PALLIATIVE CARE FOR PATIENTS WITH NON-MALIGNANT DISEASE: A ‘BIG BANG’ APPROACH

BackgroundAccess to specialist palliative care for patients with advanced non-cancer diagnoses is much lower than for those with cancer, despite a similar symptom burden and poor health-related quality of life....

An evaluation of routine specialist palliative care for patients on the Liverpool Care Pathway

This report describes a service evaluation of the 'added value' of routine specialist palliative care team (SPCT) involvement with patients on the Liverpool Care Pathway for the Dying Patient (LCP). In the authors' hospital, patients that are commenced on the LCP are routinely referred to the SPCT. They are reviewed on the day of referral and then at least every other day, depending on the clinical situation. The data for this report was obtained by reviewing the SPCT's clinical database and the patients' LCP proformas. The SPCT intervened in the care of 80% of 158 newly referred patients, e.g. for alteration of continuous subcutaneous infusion (23%) or alteration of use of non-pharmacological interventions (21%). Furthermore, 11% of patients were taken off the LCP, around one quarter of whom were later put back on. The authors' model of care could overcome many of the issues relating to the LCP and would ameliorate the developing vacuum of care for patients at the end of life.

P15 The right way to write? Development of new documentation for community palliative care

Background/ContextEfficient, comprehensive documentation not only provides a record of care, but also reflects the quality of that care whilst reinforcing care standards. However, documentation in palliative care has often fallen...

Introduction of county-wide electronic palliative care notes system improves quality and efficiency

BackgroundA partnership of the five different Specialist Palliative Care service providers in Worcestershire came together to implement a county-wide clinical notes system for specialist palliative care patients. The SystmOne electronic...

Nursing workforce modelling in UK hospices – recommendations for future planning

ContextUnited Kingdom (UK) hospice ward staffing has remained unchallenged for two decades while specialist palliative care provision has changed markedly, bringing new workforce demands. Yet, there has been little evidence...

The Symptom Burden of Patients with Hematological Malignancy: A Cross-Sectional Observational Study

Context Current literature suggests that contact with specialist palliative care for patients diagnosed with hematological malignancy is infrequent. As part of an investigation into patterns of care, the symptom profile of this patient group required elucidation. Objectives The purpose of this study was to determine the patterns of symptoms and level of distress in patients diagnosed with a hematological malignancy. Methods One hundred eighty patients diagnosed with a hematological malignancy attending a tertiary referral hospital completed the Memorial Symptom Assessment Scale-Short Form. Comparisons were made to published symptom prevalence studies of those with nonhematological malignancies. Results Patients with hematological malignancy had a considerable physical and psychological symptom burden, with an overall mean of 8.8 (±5.9) symptoms. The mean number of symptoms was significantly greater in those on treatment ( P < 0.05), those with poorer performance status ( P < 0.001), inpatients ( P < 0.01), and those with a more advanced disease stage ( P < 0.001) than their respective counterparts. Symptom prevalence ranged from 69% for fatigue to 9% for vomiting. Global, physical, and psychological distress scores were high and varied significantly according to disease stage, Eastern Cooperative Oncology Group status, and patient location. The mean number of symptoms and level of distress were comparable to those patients with metastatic nonhematological malignancy. Conclusion Patients with hematological malignancy are likely to have symptom control needs similar to those with metastatic cancer. Because such symptom burden appears to affect those at all phases of illness, comprehensive symptom assessment is suggested throughout. The introduction of palliative care services during times of increased symptom burden may assist hematologists and other carers in the management of their patients’ distress and quality of life.