Bringing palliative care to a Canadian cancer center: the palliative care program at Princess Margaret Hospital

It is increasingly recognized that complete care of the patient with cancer includes palliative care, which is applicable early in the course of illness, in conjunction with life-prolonging treatment. Princess Margaret Hospital (PMH) is Canada’s largest center for cancer care and research, and it is an international referral center for patients with cancer. The Palliative Care Program at PMH has developed into a comprehensive clinical, educational, and research program, with an acute palliative care unit, daily palliative care clinics, a cancer pain clinic, and a consultation service that sees urgent consultations on a same-day basis in inpatient and outpatient areas. We will describe the components, successes, and challenges of our program, which may be useful for others, who are developing palliative care programs in an academic setting.     

Exploring the experience of dignified palliative care in patients with advanced cancer and families: A feasibility study in Singapore

Abstract

Dignity is an important concept in palliative care. Yet, the concept is ambiguous and there does not seem to be agreement on how care can be delivered that preserves dignity at the end of life. The aim of the study was to conduct a feasibility study to explore the experience of dignity in palliative care in Singapore. We conducted qualitative interviews with four patients with advanced cancer and their primary family caregiver from a local largest home hospice service. The preliminary findings showed that the experience of dignity in Singapore context consists of three factors, which reflected 12 themes. These are (1) social factor, which comprised of family, friends, relatives, and employers; (2) organizational factor, which comprised of the healthcare system, voluntary welfare organization, and private sector, and (3) spiritual factor, which was associated with existential values, cultural and religious belief systems of the patients, and their families. The preliminary findings suggest similarity to the Western findings: dignity can be preserved by holistic care that focuses on psychosocial, physical, and spiritual aspects. In addition, dignified patient care should encompass the knowledge and sensitivity to the multi-cultural and multi-ethnic practices and health beliefs of the patients and their families. In conclusion, the preliminary findings suggest that using systems perspective, it is feasible to conduct a study to develop an empirical model on dignified palliative care in the Singapore context.     

Respective limits of palliative care and oncology in the supportive care of cancer patients

 Advanced cancer patients develop a number of devastating physical and psychosocial symptoms before death. In recent years, there have been great advances in our knowledge on the appropriate assessment and management of many of the physical and psychosocial symptoms. There is also increasing understanding on the need for patients and families to receive appropriate follow-up and to have access to multiple settings for optimal care. Unfortunately, both models developed on the basis of palliative care/hospice and those developed on the basis of supportive care/oncology have failed to achieve these goals. Future models for the delivery of supportive cancer care will have to consider the need to ensure that patients receive a consistent level of assessment and management up to the time of death, that there is appropriate flexibility, to allow patients to access multiple levels of care in the trajectory of their illness, and that there is a significant contribution to the body of knowledge and future education of health care professionals. These programs will need to develop individually for each country with due consideration for the structure of the health care system, the structure of the academic system, and the financing of health care in different regions of the world. Published online: 23 June 1999     

Supportive and palliative care of cancer patients at the Kantonsspital St. Gallen,Switzerland

In 1991, the first unit for oncology palliative care within an oncology centre in the country was opened in St. Gallen, Switzerland. The main admission criterion is symptom distress due to advanced cancer disease. The mean duration of hospitalisation was 23 days in 140 patients in 1994. Approximately one third of the patients die within the unit, while one third can be discharged for home care. The aims and strategies of interdisciplinary palliative care are described. The need for the 11-bed unit is documented by its high occupancy, by patient satisfaction and by its influence on palliative care development in and outside the country.     

Effects of the hospital-based palliative care team on the care for cancer patients: An evaluation study

Background

The hospital-based palliative care team model has been implemented in most Western countries, but this model is new in Taiwan and there is little research to evaluate its outcomes.

Objectives

The purpose of this study was to evaluate the effects of the hospital-based palliative care team on the care for cancer patients.

Design

The design was a quasi-experimental study with a pretest–posttest design.

Setting

A medical center, National Taiwan University Hospital in Taipei, Taiwan.

Participants

Cancer patients were excluded after the hospital-based palliative care team visited if they were unable to give informed consent, were not well enough to finish the baseline assessment, were likely to die within 24 h or would be discharged within 24 h, or could not communicate in Mandarin or Taiwanese. A sample of 60 patients who consulted the hospital-based palliative care team was recruited.

Methods

Patients recruited to the study were divided to receive the usual care only (control group, n = 30) or the usual care plus visits from the hospital-based palliative care team (intervention group, n = 30). Data were collected using questionnaires including the Symptom Distress Scale, Hospital Anxiety and Depression Scale, Spiritual Well-Being Scale, and Social Support Scale at the initial assessment and one week later.

Results

Comparison between groups revealed that the degree change for edema, fatigue, dry mouth, abdominal distention, and spiritual well-being in the intervention group showed significant improvement compared to the control group (p < 0.05). However, there was no difference between groups on measures of anxiety, depression and feeling of social support. Within group analysis showed patients’ pain score, dyspnea, and dysphagia improved in both groups (p < 0.05). In addition, the average degree of constipation and insomnia in the control group declined from baseline (p < 0.05), while the degree of edema, fatigue, dry mouth, appetite loss, abdominal distention, and dizziness decreased significantly in the intervention group (p < 0.05).

Conclusion

The findings indicated the hospital-based palliative care team can improve the care for patients in relation to symptom management and spiritual well-being. The hospital-based palliative care team is a good care model for patients and worth implementing in clinical practice in Taiwan. The results also provide a general understanding about how the hospital-based palliative care team works in Taiwanese culture.     

晚期腺癌合并弥散性血管内凝血患者姑息护理评估与实践

目的总结3例晚期腺癌患者合并弥散性血管内凝血(DIC)的姑息护理评估与实践经验。方法通过持续关注患者病情,及时发现DIC并动态评估其进展,加强出血、低血压休克的护理及舒缓照护等相关措施,帮助患者进行个人生命回顾,做好家属的支持与安抚。结果患者均采用对症支持治疗,遵从患者及家属意愿,于病情恶化昏迷后返家过世。结论对晚期腺癌合并弥散性血管内凝血患者进行姑息护理,可使患者有尊严地度过生命的最后时光。     

Symptom profiles and palliative care in advanced pancreatic cancer—a prospective study

Objectives To describe prospectively the prevalence and severity of disease-related symptoms, quality of life (QOL) and need for palliative care in patients with advanced pancreatic cancer.Patients and methods Fifty-one patients treated for advanced pancreatic cancer filled in the Edmonton Symptom Assessment Scale (ESAS) for symptom registration and the EORTC QLQ-C30 and QLQ-PAN26 quality of life questionnaires at first contact (baseline) and the ESAS in the following consultations. Need for palliative interventions were registered.Results Of the 22 women and 29 men (mean age, 62 years), 20 had locally unresectable cancer, 19 had metastatic disease, and 12 had recurrent disease after curative resection. Forty-six patients died during follow-up (median survival, 99 days). At baseline, patients reported significantly impaired QOL on nine of 15 scales/items (p<0.01) relative to the general population. Fatigue, loss of appetite, and impaired sense of well-being were the most troublesome symptoms on the ESAS, measured to 4.4(±2.8)/5.3(±2.3), 4.4(±3.2)/5.9(±2.7), and 4.0(±2.9)/4.6(±2.7) (mean±SD) at baseline and 8 weeks before death, respectively. Forty-four of the 51 (86%) initial consultations and 107 (58%) of the 185 follow-ups (124 clinical and 61 phone-calls) resulted in palliative care interventions, most frequently changes in opioid or laxative medication and dietary advice.Conclusions Patients with advanced pancreatic cancer develop several distressing symptoms. ESAS was useful for assessment of symptom prevalence and intensity and is a clinically adequate method for symptom control. A multidisciplinary approach is necessary for the best palliation of symptoms at the time of diagnosis and during follow-up.     

District nurses’ role in palliative care provision: A realist review

Objectives

The aim of this review is to construct a detailed account of the role of the district nurse (generalist registered nurse providing nursing care in primarily home settings) in providing palliative care, to determine if and how district nursing care provides effective care to such patients at home, and to examine the utility of a realist review for the above purpose.

Design

Realist review of literature.

Data sources

Papers in English reporting aspects of the district nurse role in the provision of palliative care are included. Electronic databases (Ovid Medline, Cinnahl, British Nursing Index, Embase, PsycINFO and EBM reviews) were searched, supplemented by citation tracking and grey literature searches.

Review methods

Assumptions about district nursing practice with palliative care patients are derived from a range of sources. Reviewed papers are interrogated to support, refute or develop these statements.

Results

Forty six papers employing a range of research methods are incorporated into the review. Studies focus on district nurses, patients, family carers and other professionals and include work from a range of countries. Studies highlight the value district nurses place on palliative care provision, the importance of developing a relationship with patients, and the emotional difficulties of providing such care. District nurses have key skills in providing physical care and in coordinating the work of others, but struggle more with psychological aspects of care. District nurses report feeling undervalued, and express some reluctance to work with other health and social care professionals to provide care.

Conclusions

There is little in this synthesis to shed light on the outcomes of care or to explicitly guide practice. District nurses clearly articulate what they consider to be important, but research in this area is limited and needs to undergo a renaissance to examine what is important: namely what district nurses do in practice; what patients and family carers views are on what they do and do not do; and how district nurses can improve care outcomes. The inclusiveness of realist review works well for this field of study.     

Clinimetric properties of the de Morton Mobility Index in healthy, community-dwelling older adults

Davenport SJ, de Morton NA. Clinimetric properties of the de Morton Mobility Index in healthy, community-dwelling older adults.

Objective

To investigate the clinimetric properties of the de Morton Mobility Index (DEMMI) in healthy, community-dwelling older adults.

Design

Cohort study.

Setting

Retirement village and Returned and Services League (RSL) club in Melbourne, Australia.

Participants

All participants were 65 years or older, healthy, and living within the community. The validation study included participants recruited from a retirement village (n=61), and the reliability studies included participants recruited from an RSL club and a subset of participants from the retirement village.

Interventions

Not applicable.

Main Outcome Measures

Mobility was assessed using the DEMMI. The percentage of participants who scored the highest and lowest possible score on the DEMMI was calculated to determine whether a floor or ceiling effect occurred. The minimal clinically important difference (MCID) was estimated using a distribution-based method. Reliability was assessed independently and concurrently using the minimal detectable change at 90% confidence (MDC₉₀).

Results

Evidence of convergent and discriminant validity was obtained for the DEMMI by examining correlations with measures of related constructs, the Lower Extremity Functional Scale (r=.69) and Quality of Life Scale scores (r=.28), respectively. Participants who ambulated without a gait aid (82.62±10.63) had significantly higher (P<.0) DEMMI scores than those who ambulated with an aid (64.1±12.40), providing evidence of known groups validity. No floor or ceiling effect was identified. The MCID was 7 points. The MDC₉₀ was 13 (95% CI, 8.76–17.05) points on the 100-point scale.

Conclusion

DEMMI scores in healthy, community-dwelling older adults are both valid and reliable.     

Changes in medical and nursing care in cancer patients transferred from a palliative care team to a palliative care unit

The primary aim of this study was to explore the changes in medical/nursing care in patients who transferred from a palliative care team (PCT) to a palliative care unit (PCU) in the same hospital, and to explore the reasons why new or modified interventions were required. This was a retrospective study of 50 consecutive patients who were transferred from PCT to PCU in a 750-bed general hospital. A trained nurse performed a chart review and recorded the changes in 1) medical/nursing care, 2) help with decision-making within 48 hours after PCU admission, and 3) documentation of family and psycho-existential care. Group discussions among PCT and PCU staff members explored the potential reasons for the changes. Five patients were excluded due to admission periods of shorter than 48 hours. The number of new/modified medical and nursing care interventions after PCU admission averaged 1.9 ± 1.5 and 1.5 ± 1.3 per patient, respectively. The most common medical treatments were: reduction in hydration volume, dose titration of opioids, change in opioid administration device, opioid rotation, and addition of NSAIDs and steroids. The most common nursing interventions were: allowing patient to take a bath, changing mattress, use of massage, and discontinuation of bronchial suctioning. In addition, PCU staff newly coordinated opportunities to discuss preferred end-of-life care with primary caregivers in 38% of the cases, family members other than primary caregivers in 16%, and patients in 6.7%. The chart documentation of family care and psycho-existential care increased considerably after PCU admission. The chief reasons for these changes were: under-recognition of the problems and unavailability of treatments (pharmacological treatments), no intention to intervene and recommendations not followed by primary physicians (rehydration therapy), no intention to intervene (nursing care), and no intention to intervene and under-recognition of the problems (help with decision-making). These data demonstrate that many patients under PCT consultation receive new or modified interventions after PCU admission. Potentially useful strategies to strengthen the PCT interventions are: modification of intervention structure to minimize under-recognition of symptoms and decision making problems (e.g., use of standardized assessment tools, regular conferences), changes in the health care system to allow unlicensed drugs, clinical studies to clarify the benefits of artificial hydration therapy, and greater efforts to intervene in the areas of nursing care, help with decision making, family care, and psycho-existential care.     

Prophylactic anti-coagulation in cancer palliative care: a prospective randomised study

GOALS: The objective of this study was to determine utility of prophylactic anti-coagulation in cancer patients hospitalised for palliative care in a specialised centre. MATERIALS AND METHODS: Prospective 1:1 open randomised study was designed. Twenty patients aged 55 to 88 years with advanced cancer and an estimated life expectancy of less than 6 months were assigned to either receive treatment with 2,850/3,800 U (<70/>70 kg) of daily subcutaneous nadroparin or no treatment. Suspicion of venous thrombo-embolism (deep vein thrombosis and pulmonary embolism) was confirmed by echo-Doppler examination of the lower limbs and/or by spiral computed tomography scan of the lungs. Bleeding episodes were recorded. Platelet count was measured on days 7 and 14. Survival time from study entry was determined. MAIN RESULTS: One venous thrombo-embolism and one major bleeding occurred in the group receiving nadroparin, whereas two minor bleedings occurred in the control group. At 3 months, nine of ten participants had died in the control group vs five of ten in the group receiving nadroparin (P = 0.141). Five participants could be discharged home (P = 0.141). CONCLUSIONS: Decision to administer prophylactic nadroparin in hospitalised cancer patients under palliative care remains a challenge. Better mobility score at admission and the likelihood to be discharged home may be useful for practical purposes. The observation of a potential influence of prophylactic nadroparin on survival deserves further studies.     

Palliative sedation in a specialized unit for acute palliative care in a cancer hospital: comparing patients dying with and without palliative sedation

Palliative sedation is undergoing extensive debate. The aims of this study were to describe the practice of palliative sedation at a specialized acute palliative care unit and to study whether patients who received palliative sedation differed from patients who did not. We performed a systematic retrospective analysis of the medical and nursing records of all 157 cancer patients who died at the acute palliative care unit between 2001 and 2005. Palliative sedation, defined as continuous deep sedation prior to death, was used for 43% of all deceased patients. In 87% of the sedated patients, it was started in the last two days before death. Sedated and nonsedated patients did not differ in survival after admission (eight days vs. seven days, P = 0.12). Sedated patients were younger (55 years vs. 59 years, P = 0.04) and more often had malignancies of the digestive tract (P < 0.01). In both groups, common symptoms at admission were pain (79% vs. 87%, P = 0.23), constipation, (40% vs. 48%, P = 0.46), and dyspnea (32% vs. 29%, P = 0.77). On the day that palliative sedation was started, sedated patients more often suffered from dyspnea and delirium than nonsedated patients at a comparable day before death. The most important indications for palliative sedation were terminal restlessness (60%) and dyspnea (46%). We conclude that at the studied acute palliative care unit, patients who ultimately received palliative sedation did not have symptoms different than nonsedated patients at admission, but on the day at which the sedation was started, they suffered more often from delirium and dyspnea.     

Use of palliative sedation for intractable symptoms in the palliative care unit of a comprehensive cancer center

Background  There is wide variation in the frequency of reported use of palliative sedation (PS) to control intractable and refractory symptoms in terminally ill patients. The aim of this study was to determine the frequency and outcomes of PS use and examine patterns of practice after establishment of a policy for the administration of midazolam for PS in our palliative care unit (PCU). Materials and methods  This retrospective study reviewed PCU admissions for 2004 and 2005 and pharmacy records to identify patients who received chlorpromazine, lorazepam, or midazolam for PS in the PCU. Data on indication for PS, drug used, and discharge outcome were assessed for each patient. Results  During the period studied, there were 1,207 PCU admissions. Of these patients, 186 (15%) received PS; and 143 (41%) of the 352 patients who died in the PCU received PS. The median age of PS patients was 58 (range, 20–84) years, and 106 (57%) were male. The most common indications for PS were delirium, 153 cases (82%); dyspnea, 11 (6%); and multiple indications, 12 (6%). Midazolam was used in 18 PS cases (10%). Six (55%) of 11 patients with dyspnea received midazolam for PS, compared with 12 (7%) of 175 patients with other indications for PS (p < 0.001). Forty-three (23%) of 186 PS patients were discharged alive, compared with 812 (80%) of 1,021 patients who did not receive PS (p < 0.001). Conclusions  PS was required in 15% of PCU admissions, and 23% of PS patients were discharged alive. Our findings suggest a potential for significant underreporting of overall PS. If our institution’s policy on midazolam use for PS were less restrictive, midazolam use might increase. More research is needed to define the optimal agent for inducing rapid, effective, and easily reversible PS. These data were presented in part at the Annual meeting of the American Society of Clinical Oncology; Atlanta, GA, 2006.     

晚期癌症患者居家姑息照护适宜条件的研究

运用Delphi法,经过3轮专家咨询(15名专家),对在前期研究基础上初拟的晚期癌症患者居家姑息照护适宜条件进行修订.①专家权威系数Ca=0.805;②3轮专家咨询的应答率RR均为100%;③形成了晚期癌症患者居家姑息照护的适宜条件,包括3大内涵和14个子条件:支撑居家姑息照护服务发展的医疗卫生政策(4个子条件)、能够提供居家姑息照护的社区卫生服务(8个子条件)、适宜接受居家姑息照护的服务对象(2个子条件).提出"适宜条件"对居家姑息照护服务的长远发展起到了规范和推动作用;本研究具有一定的创新性,但还需在未来的实践和研究中进一步深化和完善.     

姑息护理对晚期肺癌患者心理状况的影响

目的:探讨姑息护理对晚期肺癌患者心理状况的影响。方法:将80例晚期肺癌患者随机分为观察组和对照组,入组前分别填写症状自评量表(SCL-90)以测评患者心理健康水平;入组后对照组予肺癌常规护理干预,观察组则在常规护理基础上行姑息护理干预。护理干预2周后,以同样方式发放症状自评量表和满意度调查表,对两组患者再次进行评定。结果:入组前两组患者SCL-90因子分均高于国内常模;护理干预2周后,观察组SCL-90因子分低于对照组(P<0.01);观察组总均分、阳性症状总数及均分低于干预前(P<0.01),差别有显著性意义。结论:姑息护理能够有效改善晚期肺癌患者的躯体化、强迫、人际关系敏感、焦虑、抑郁等不良心理状况。     

The problems experienced by patients with cancer and their needs for palliative care

Objectives To investigate the problems that patients experience and their met- and unmet needs for professional help. This information is necessary to tailor palliative care to patient needs.Patients and methods Patients (n=94) with disseminated cancer completed a validated checklist with 90 potential problems and needs for palliative care (PNPC questionnaire).Main results On average, patients experienced 37 problems (range 0–68) and required more professional attention for eight problems (range 0–71). The five most prevalent problems were: fatigue, heavy housework, coping with the unpredictability of the future, fear of metastases, and frustrations because I can do less than before. The five issues most in need of extra attention were: informational needs, coping with the unpredictability of the future, fear of metastases, fear of physical suffering, and difficulties remembering what was told (during consultations). Younger patients experienced more social, psychological, and financial problems. Some 10% of patients expressed a multitude of problems and needs.Conclusions While patients with metastasized cancer experienced a wide variety of problems, they asked for more support for only a few specific problems. Evidently, problems are not synonymous with unmet needs. Therefore, not only problems but also needs for care should be assessed. A structural need for support to cope with fears of suffering and loss of autonomy was found. Ten percent of patients expressed a multitude of problems and needs and might benefit either from psychological counseling or better palliative care.     

Symptom clustering in hospitalised older palliative cancer patients: A cross-sectional study

BackgroundAccurate detection of symptoms is essential in palliative care. Identification of clustering of symptom is valuable to develop target interventions. This area is largely understudied in older palliative cancer patients.ObjectivesTo identify symptom clustering in older palliative cancer patients, and patient groups based on the clustering of symptoms, and to evaluate the difference in functional dependence and experiencing life as not meaningful between the identified patient groups.DesignA cross-sectional study.SettingGeriatric and non-geriatric wards of seven acute care hospitals.Participants400 palliative cancer patients aged 65 years and older.MethodsSymptoms were collected using a validated instrument which assesses physical, psychological, functional, social, and existential symptoms by means of a structured interview with a researcher. An agglomerative hierarchical clustering analysis was used to analyse the data.ResultsThe cluster analysis revealed five groups of symptoms: (1) urological and gastrointestinal symptoms, and their treatment complications, (2) psychological and existential symptoms, (3) pain, constipation, sleeplessness and airway problems, (4) functionality problems, and (5) fatigue-related symptoms. Three patient groups were identified: (1) symptom-free group, (2) physical discomfort group, and (3) physical and psychological discomfort group. In the last group, significant more patients had a geriatric risk profile and less of them received chemotherapy. Patients in this group were more often functionally dependent and experienced their life as not meaningful.ConclusionFive groups of symptoms were identified. Three patient groups were identified which reported different levels of functionality and experiencing life as meaningful. Healthcare professionals should be triggered to detect symptom clusters and be alert to the presence of the other symptoms in the cluster when identifying one symptom. They should also be alert to patients with a geriatric risk profile because of their higher risk of experiencing physical and psychological symptoms and the influence these symptoms have on being functionally dependent and experiencing life as not meaningful.