Mapping the clinical care pathways for advanced stage non-small cell lung cancer patients in Victoria: A retrospective cohort study of supportive and palliative care

The lung cancer Optimal Care Pathway recommends supportive care and palliative care integration throughout its various steps, with early referral to appropriate services improving the quality of life in advanced stage non-small cell lung cancer patients. Using Victorian Lung Cancer Registry data and linked administrative datasets, this retrospective cohort study mapped clinical care pathways of 525 Stage III–IV non-small cell lung cancer patients in Victoria to 11 recommendations in the Optimal Care Pathway, identifying unwarranted variations in clinical care. Supportive care and palliative care delivery were further examined to understand the involvement and timing of specialist care teams. Our findings showed that palliative care utilization is highest at the time of treatment, despite recommendations that it should be provided early after diagnosis to improve patient outcomes and satisfaction. Early supportive care screening was observed in half the cohort and almost three-quarters of the patients had been presented at a multidisciplinary meeting. Multidisciplinary meeting presentations and supportive care provide an opportunity to improve communication about palliative care needs and integration into routine clinical practice, such as at the time of treatment planning.     

Estimating needs in life threatening illness: a feasibility study to assess the views of patients and doctors

BACKGROUND: Provision of palliative care for patients with non-cancer conditions is hindered by the difficulty of predicting when people will die and fear of causing distress by raising end-of-life issues. OBJECTIVES: To compare patients' and professionals' (1) estimations of prognosis; (2) perceptions of the seriousness of the illness and needs for supportive care; and (3) acceptability of this sensitive research, in end-stage cancer and non-cancer diseases. DESIGN: Prospective cohort study. SETTING: A teaching hospital and a Marie Curie hospice in London. SUBJECTS: Twenty patients with advanced non-malignant disease (heart failure, chronic obstructive pulmonary disease and renal failure) and 20 patients with advanced cancer, and their physicians in charge. Method: A feasibility study using vignettes to aid patients and doctors estimate of prognoses. Main outcome measures were (1) patients' and physicians' estimates of health status, care needs and prognosis; and (2) patient survival. RESULTS: Patients were willing and able to estimate their own life expectancy and cancer patients correctly estimated that they had a poorer prognosis than non-cancer patients. Non-cancer patients perceived that they had similar needs for supportive care as cancer patients. Physicians made little distinction in palliative care needs between patients with and without cancer, but tended to make more pessimistic estimates of prognosis in non-cancer patients. CONCLUSIONS: Patients are able to judge their health status and life expectancy and do not object to questions about end-of-life care. Cancer and non-cancer patients have similar needs for supportive care. We need further evidence on the value of self-rated prognosis and how to provide palliative and supportive care for all patients who are near death.     

Heart failure and palliative care services working in partnership: report of a new model of care

It is widely acknowledged that people with advanced heart failure have at least as great a need for supportive and palliative care as those with malignant disease. However, specialist palliative care services are seldom involved in their care in the UK. We describe a three-year collaboration between community-based heart failure nurse specialists and existing specialist palliative care services. In the model of care that has evolved, the heart failure nurses remain key workers throughout the illness. They run a regular support group for patients and carers in the setting of a hospice day therapy unit, referring patients for other palliative care involvement as necessary. Activity data and the results of patient interviews are presented. These suggest that the model is a cost effective, sustainable way of providing high quality care for people with heart failure.     

Differences in physician access patterns to hospice care

Few issues in health care have recently generated as much discussion as the two seemingly unrelated topics of out-of-hospital health care financing and compassionate care of patients at the end of life. These two topics meet where health care costs cross paths with the economic viability of hospice and palliative medicine. In this study, we evaluated 101 admissions to a large Medicare-certified hospice in the last quarter of 1995 to assess factors associated with timing of referral to hospice. Mean length of stay in hospice was 55 days; median was 23 days. The majority of patients had cancer diagnoses (74%). Contrary to our hypothesis, there was no statistically significant difference in mean patient lengths of stay between oncologist-referred and nononcologist-referred patients. However, when we compared patient lengths of stay lasting less than--versus longer than--30 days, more patients referred by nononcologists were in hospice longer than 30 days (chi 2 = 3.92, P < 0.05). With further evaluation, this difference was attributable to longer stays by patients covered by the Medicine hospice benefit, by those with noncancer diagnoses, and by those who were older. More of these patients were referred by nononcologists. The difference in referral patterns between oncologists and nononcologists disappeared when only cancer patients were considered. Consistent with initial hypotheses, caregivers of patients with shorter lengths of stay were significantly less satisfied with hospice care (t = -4.06, P < 0.001). These results suggest that health care benefits and other patient-specific issues influence timing of hospice referral rather than simply preferences by types of physicians. The impact on Medicare expenditures and hospice viability is discussed.     

Antimicrobial use in patients with advanced cancer receiving hospice care

Patients with advanced cancer receiving hospice and palliative care are highly susceptible to infections. The decision whether to treat an active or suspected infection in end-of-life care may be difficult. In order to develop guidelines for the use of antimicrobials (antibiotics and antifungals) in palliative care, we discussed antimicrobial options with 255 patients with advanced cancer at the time they entered a community-based hospice and palliative care program. We subsequently documented the use and effectiveness of the antimicrobials employed during the palliative care period. Most patients (79.2%) chose either no antimicrobials or symptomatic use only. Choices were influenced by age, the desire for symptom control, life-prolongation issues, and the condition of the patient. After admission, 117 patients had a total of 129 infections, with the most common sites being urinary tract, respiratory tract, mouth/pharynx, and skin/subcutaneous tissues. The use of antimicrobials controlled symptoms in the majority of the urinary tract infections, but were less effective in controlling symptoms in the other sites of infection. Survival was not affected by the patients' choice of whether to use antimicrobials, the prevalence of infections, or the actual use of antimicrobials. Symptom control may be the major indication for antimicrobial use for patients receiving hospice and palliative care.     

Providing a "good death" for oncology patients during the final hours of life in the intensive care unit

Cancer is a leading cause of death in the United States. Aggressiveness of cancer care continues to rise in parallel with scientific discoveries in the treatment of a variety of malignancies. As a result, patients with cancer often require care in intensive care units (ICUs). Although growth in hospice and palliative care programs has occurred nationwide, access to these programs varies by geographic region and hospital type. Thus, critical care nurses may be caring for patients with cancer during the final hours of life in the ICU without the support of palliative care experts. This article provides an overview of the meaning of the final hours of life for cancer patients and uses principles of a "good death" and the tenets of hospice care to organize recommendations for critical care nurses for providing high quality end-of-life care to patients with cancer in the ICU.     

晚期癌症患者的替代决策者姑息照护决策冲突的调查研究

目的 调查晚期癌症患者的替代决策者姑息照护决策冲突现状并分析其影响因素。 方法 2020年10月—2021年5月,使用便利抽样法,选取在某三级甲等医院就诊的235名晚期癌症患者的替代决策者作为调查对象。使用一般资料调查表、决策冲突量表、临终关怀认知问卷、一般自我效能感量表进行调查。 结果 晚期癌症患者的替代决策者决策冲突量表得分为（40.19±9.15）分,91.9%的替代决策者选择姑息照护时存在决策冲突,其中高水平决策冲突高达58.7%。决策冲突水平与临终关怀认知、一般自我效能感水平呈负相关（r=-0.505,-0.550,P<0.05）。多元线性回归分析结果显示,替代决策者年龄、职业、照顾临终患者经历、疾病了解程度、临终关怀认知、一般自我效能感是其决策冲突的影响因素。 结论 癌症患者替代决策者姑息照护决策冲突处于中高水平,存在决策延迟、决策后悔等情况;替代决策者高龄、无稳定工作、无医疗知识相关背景、有临终照护经历、对疾病了解较少者决策冲突水平更高;提高临终关怀认知、一般自我效能感水平有助于降低替代决策者决策冲突水平。     

以互联网为依托的居家安宁疗护联合疼痛管理对老年晚期肝癌患者生存质量和家庭压力的影响

摘要：目的：观察以互联网为依托的居家安宁疗护联合疼痛管理对老年晚期肝癌患者生存质量和家庭压力的影响。方法：选择2020年6月-2021年5月和2021年6月-2022年5月在廊下及吕巷接受居家安宁疗护的肝癌晚期患者61例和77例分别为常规疗护组、互联网疗护组，分别予以常规居家安宁疗护联合疼痛管理，和互联网为依托的居家安宁疗护联合疼痛管理护理。在干预前、干预后3个月比较两组患者生存质量、负面情绪、睡眠、疼痛以及家庭压力。结果：干预3个月后，互联网疗护组QOL-LC量表中躯体功能、心理功能、症状/副作用、社会功能评分、SAS和SDS评分、PSQI评分、疼痛VAS评分、FDI评分均低于常规疗护组，舒适度量表中生理舒适、精神心理舒适、环境舒适三个维度各条目平均分高于常规疗护组。结论：以互联网为依托的安宁居家疗护联合疼痛管理，提高老年晚期肝癌患者生存质量、缓解患者家庭压力的重要作用。     

Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided

Individuals with a primary malignant brain tumour require intensive palliative care services because of the symptoms and cognitive problems they experience. Many of these patients stay with their families at home, being supported by palliative care home teams rather than being admitted for hospice care. The provision of respite care and community services to support these families goes largely unreported. This study arises out of a need to review support services for patients and carers within one cancer and palliative care service. This retrospective case analysis identifies that there are a range of services used in the community to support patients with primary malignant brain tumours but that only a small proportion receive inpatient hospice care. District nursing services were extensively used but also a high number (74%) of patients were admitted to local hospitals for symptom management. This paper attempts to explore the services utilized but also questions the apparently limited provision of hospice care for supporting individuals in the palliative care stages of such an illness. This paper considers the illness trajectory, the complex symptoms experienced by patients and respite services utilized. Issues of those engaged in informal care giving and in the provision of support for those with a primary malignant glioma are also considered.     

Older adults' attitudes to death, palliative treatment and hospice care

BACKGROUND: Cancer patients who receive care from specialist palliative care services in the UK are younger than those who do not receive this care. This may be explained by age-related differences in attitudes to end-of-life care. OBJECTIVE: To determine the relationship between age and i) attitudes to death and preparation for death; and ii) knowledge about, and attitudes to, cancer and palliative care. DESIGN: Interviews with older people, using a novel questionnaire developed using nominal groups. Main comparisons were made between people aged 55-74 with those aged 75 years and over. SETTING: General practices in London. SUBJECTS: 129 people aged 55-74 and 127 people aged 75 years or over on the lists of general practitioners. METHODS: A cross-sectional survey to determine knowledge and experience of hospice care; preparation for end-of-life; and attitudes to end-of-life issues. RESULTS: Participants were knowledgeable about specialist palliative care and almost half had some indirect contact with a hospice. People aged >74 were less likely than younger participants to want their doctor to end their life in a terminal illness. Although they believed death was easier to face for older people, they did not believe that younger people deserved more consideration than older people when dying, or that they should have priority for hospice care. Education, social class, hospice knowledge and anxiety about death had little influence on overall attitudes. CONCLUSIONS: The relative under-utilization of hospice and specialist palliative care services by older people with cancer in the UK cannot be explained by their attitudes to end-of-life issues and palliative care.     

The quality of supportive care among inpatients dying with advanced cancer

Purpose

Managing symptoms and communicating effectively are essential aspects of providing high-quality cancer care, especially among patients with advanced cancer. The purpose of this study is to apply novel quality indicators to measure the quality of supportive care provided to patients with advanced cancer who died in a large university medical center.

Methods

Cancer quality ASSIST is a comprehensive quality indicator (QI) set that includes 92 symptom and care planning indicators, of which we piloted 15 applicable to persons with advanced cancer who died in the hospital setting. We evaluated medical records of all adult terminal hospitalizations with lengths of stay ≥3?days at one university medical center between April 2005 and April 2006.

Results

Of 496 decedents, 118 had advanced cancer (mean age 60, 54?% male). Forty-five percent received chemotherapy or radiation in the month prior to or during admission. During the hospitalization, 56?% of the patients spent time in the ICU (median length of stay 8?days), one in five received first-time hemodialysis, and 23?% had a ventilator withdrawn anticipating death. The 118 patients triggered 596 quality indicators of which 476 passed (QI level pass rate 80?%, range 50–100?%). Pain assessment and management were consistently performed; however, other cancer supportive care needed improvement: 26?% of patients not receiving cancer therapy who had nausea and vomiting received inadequate follow-up, more than one quarter of patients with dyspnea had this symptom inadequately addressed, and 29?% of patients taking long-acting opioids were not prescribed a bowel regimen. Timely discussion of patient preferences upon admission to the ICU or initiation of mechanical ventilation occurred in 64 and 69?% of cases, respectively.

Conclusions

This set of quality indicators can evaluate the quality of supportive and end-of-life care provided to inpatients dying with advanced cancer and identify aspects of care that need improvement.     

Assessing the value of hospice care: is documentation of cost savings necessary

Hospice care is one end-of-life option that since its inception has been the subject of numerous cost comparisons. Early hospice care emerged as a social movement in the United Kingdom. This movement began outside the medical services establishment and sought to improve care for the terminally ill through palliative and supportive services, provided in the patient's own home (1). Hospice care was viewed as a dramatic shift away from the dominant medical paradigm that favored aggressive and technologically intensive treatment of advanced disease in an institutional setting. While many public and health policy analysts have attributed the high cost of dying to the use of aggressive and intensive treatments, the cost-savings of hospice is still an issue for debate. The results of the National Hospice study, which documented medical cost savings during the last six months of life for hospice patients as compared to conventional care patients, was seen as the impetus for Medicare reimbursement for hospice services (2,3). Against this backdrop, the Medicare Hospice Benefit was enacted in 1982 with the goal of providing humane, compassionate and cost-effective care for Medicare beneficiaries with incurable advanced disease. Ever increasing concerns about rising health care costs and the economics of dying have fueled numerous studies trying to quantify the cost savings at the end of life that may result from hospice versus conventional care.     

Minimum dataset activity for hospice and hospital palliative care services in the UK 1997/98

This study reports on the third in an annual series of surveys covering England, Wales, Scotland and Northern Ireland on the activity of palliative care services. This report concentrates on inpatient (hospice and hospital) services. All 640 known UK palliative services were sent a standardized questionnaire asking about the characteristics and numbers of patients cared for. Results were analysed for those services primarily for adults. From the 189 inpatient units (2955 beds) there was an 84% response rate in total, but the response to many of the questions was lower than this. Sixty per cent of services recorded 24,362 new patients, and about 50% provided details showing that 96.7% patients had cancer, and one-third were aged under 65 years. This is higher than the national distribution of cancer deaths where 24% are under 65 years. Conversely, only 7% were in the over 84 age group, which has 14% of cancer deaths. Most patients (73%) were admitted from their own home. Half of the admissions ended in death, and the majority of discharges were to the patient's own home. The mean length of stay was 13.1 days, with larger units tending to have a longer length of stay. Forty per cent of admissions were for one week or less (2.3% of patients died on the day of admission) and 15% were for more than three weeks. Bed occupancy varied between 99.7 and 48.9%. Responses were received from 74% of the 326 hospital support services, although again many questions were answered by less than half of those eligible to do so. Details of 37,194 new patients were reported (5.9% did not have cancer, although there was a wide range between services). Patients typically had four contacts with the service, although almost a quarter were single contacts. Three-quarters of the contacts were by a clinical nurse specialist. National estimates suggest that of the 155,000 patients dying of cancer in the UK each year 27,600 (18%) die in a hospice. There are 39,000 new hospice admissions each year and about 100,000 patients have contact with a hospital support service. Overall, the national provision of palliative care is increasing but there are groups who still appear to be missing out on palliative care, especially older people. Increasingly, patients appear to be admitted to a hospice earlier in care and are discharged home.     

Ethical dilemmas in hospice and palliative care

In order to understand some of the ethical dilemmas that face hospice programs in the United States, one must understand the Medicare Hospice Benefit, which is the model by which hospice programs provide palliative care to terminally ill patients in the United States. Unlike palliative care programs outside the United States, patients must have a prognosis of 6 months or less to receive hospice care under the Medicare Hospice Benefit. Care is reimbursed on a per diem basis, and inpatient care is restricted to pain and symptom management that cannot be managed in another setting. Ethical dilemmas that face physicians referring patients to hospice programs include the ability of clinicians to predict accurately a patient prognosis of 6 months or less, and to what extent hospice programs and clinicians are obligated to provide patients with full information about their illness, as the Medicare Hospice Benefit requires that patients sign an informed consent in order to elect the hospice benefit. There are ethical dilemmas that affect day-to-day patient management in palliative care programs including physician concern over the use of morphine because of possible respiratory depression in the advanced cancer patient, the question of providing enteral or parenteral nutritional support to patients who refuse to eat near the end of life, and the question of providing parenteral fluids to patients who are unable to take fluids during the terminal phases of illness. A final ethical dilemma concerns the methodology for quality of life research in palliative care. By following current research dogma, and only considering patient-generated data as valid, the patient population that most needs to be studied is excluded. A new methodology specifically for palliative care research is needed to provide information on the patients who are cognitively or physically impaired and unable to provide input regarding their needs near the end of life.Presented as an invited lecture at the 6th International Symposium: Supportive Care in Cancer, New Orleans, La., USA, 2–5 March 1994     

Emotional support and the role of Clinical Nurse Specialists in palliative care

BACKGROUND: Clinical Nurse Specialists (CNS) play a major role in the delivery of specialist palliative care services to patients with advanced cancer, in hospital, hospice and community settings across the United Kingdom. A major component of their work focuses on the delivery of emotional care and support to patients and their families. AIM: This paper critically examines the literature on emotional care and support for patients with advanced cancer requiring palliative care. The aim is to increase understanding of how CNSs and patients interact and work together to produce emotionally supportive relationships. METHODS: A literature search was performed using the CINAHL, MEDLINE and ASSIA CD-ROM databases and combinations of the key words: 'emotional support', 'emotional care', 'end of life', 'palliative', 'terminal illness', 'advanced cancer', 'Clinical Nurse Specialist', 'emotional labour'. Additional relevant articles were identified from the reference lists of papers identified by the literature search. FINDINGS: The literature revealed a lack of clarity about the terms used to describe emotional care and support. However, at the same time, there is a taken for granted assumption that a shared understanding of these terms exists. Developing supportive nurse-patient relationships involves a complex process, one that consists of getting to 'know the patient' through the effective use of communication skills, in a variety of health care contexts. The costs of engaging in 'emotion work' are highlighted. CONCLUSIONS: Existing research fails to recognize that emotional care and support as a concept is not a fixed, stable entity learnt through experience and socialization, but is moulded by the process of social interaction and by specific contexts and theoretical perspectives. Further methodologically sound research is needed to explore what happens when emotional care and support are delivered in different care settings, obtaining the views of both parties involved. Implications for the practice of CNSs are discussed.     

Impact of availability of an inpatient hospice unit on the parent hospital's quality of palliative care for Taiwanese cancer decedents, 2001-2006

Context

Hospice care has increasingly been shown to affect quality of palliative care at both the individual and institutional levels. However, an institutional effect has only been addressed in single comprehensive cancer centers/selected community hospitals.

Objectives

To investigate the impact of an inpatient hospice unit on the parent hospital’s quality of palliative care.

Methods

This was a retrospective cohort study using administrative data from the entire population of 204,850 Taiwanese pediatric and adult cancer patients who died in 2001–2006. Outcome variables were adjusted by multivariate logistic regression for five groups of confounding variables: 1) patient demographics and disease characteristics, 2) primary hospital characteristics, 3) primary physician specialty, 4) health care resources at the hospital and regional levels, and 5) historical trend.

Results

Taiwanese cancer patients who received primary care in a hospital with an inpatient hospice unit (whether or not they received hospice care) were significantly less likely to be intubated (adjusted odds ratio [AOR]: 0.71; 95% confidence interval [CI]: 0.58, 0.86) and use mechanical ventilation support (AOR: 0.70; 95% CI: 0.56, 0.87) in their last month of life. They also were more likely to use hospice care before death (AOR: 3.51; 95% CI: 1.57, 7.86). Furthermore, if they used hospice care, they tended to be referred earlier than cancer patients being cared for in a hospital without an inpatient hospice unit.

Conclusion

Integrating both acute care and palliative care approaches to caring for terminally ill cancer patients in the same hospital may influence the quality of palliative care throughout the hospital as evidenced by our findings that these patients have lower likelihood of being intubated with mechanical ventilation support in the last month of life, greater propensity to receive hospice care in the last year of life, and a trend toward earlier referral to hospice care. The generalizability of these results may be limited to patients who died of a noncancer cause and by the two groups not being exactly matched for patients’ characteristics.     

CHOICES: promoting early access to end-of-life care through home-based transition management

CHOICES is a comprehensive home-based care coordination program designed to bridge the gap between home health and hospice for Medicare + Choice enrollees with advanced chronic illness in San Francisco's East Bay region. Key elements of the program include physician education, enrollment of patients with high disease burden who may not be terminally ill, co-management of care with the primary physician, and an advanced practice clinical team that provides comprehensive in-home assessments, a flexible mix of life-prolonging and palliative care that evolves with disease progression, focused education and advance planning, and caregiver support. During a 42-month demonstration, 208 patients were enrolled in the program. Eighty percent had a non-cancer diagnosis; 40% were people of color. After an 8-month follow-up, 44% of the study cohort had died in the program or after transfer to hospice, 51% had been discharged, and 5% remained active. Median length of stay for decedents was 260 days. Preliminary evidence supports the program's feasibility and acceptability to patients, families, physicians, and agency partners. However, the uncertain future of Medicare + Choice and of managed care may jeopardize the program's sustainability. Policymakers and taxpayers will need to determine how to care for the growing number of chronically ill elderly who wish to remain at home as illness advances. The care needs of these patients and their families may overwhelm a health system organized around hospital treatment of acute illness.     

Developing triggers for the surgical intensive care unit for palliative care integration

PurposeDespite the growing acceptance of palliative care as a component of high-quality care for patients with serious illness, it remains underutilized in the surgical critical care setting. This article provides insight into a model for palliative care integration into the surgical intensive care unit (SICU), using triggers.MethodsWe performed a prospective cohort study after the implementation of a new set of palliative care triggers in the SICU of an 1170-bed tertiary medical center over the course of 9 months. We aimed to determine the ability of these triggers to identify patients who would benefit from palliative care consultation.ResultsThere were 517 SICU admissions during the period of interest. Of this cohort, patients who had not yet been discharged at the time of analysis were excluded (n = 25), and the remaining underwent analysis (n = 492). Factors significantly associated with hospital death or hospice discharge were repeat SICU admission, metastatic/advanced cancer, SICU physician referral, and the matching of 2 or more secondary criteria.ConclusionsA series of triggers can help identify patients who may benefit from palliative care consultation. This approach can be used in intensive care settings to facilitate palliative care integration.     

Interval between palliative care referral and death among patients treated at a comprehensive cancer center

In recent years, patients with advanced cancer are referred more frequently to palliative care programs. However, the referrals usually occur relatively late for the management of severe physical and psychological distress. The purpose of this retrospective study was to investigate the interval between palliative care referral and death in patients with advanced cancer. We reviewed charts of 240 consecutive patients with advanced cancer referred to the palliative care program at M.D. Anderson Cancer Center between September and December 2003. Demographics, as well as dates of cancer diagnosis, advanced disease diagnosis, palliative care referral, and death were determined. The median age was 61 years old, 173 were male, 304 patients had solid tumors, and 26 had hematologic malignancies. The median time intervals between the diagnosis of the primary cancer and death, diagnosis of advanced disease and death, advanced disease and palliative care referral, and palliative care referral and death were 33.0 months (95% confidence interval [CI]: 25.8-41.9), 9.4 months (95% CI: 7.9-11.1), 5.6 months (95% CI: 4.3-7.7), and 1.9 months (95% CI: 1.6-2.2), respectively. The patients' median time interval from advanced cancer diagnosis to death and from palliative care referral to death was shorter in patients with hematologic malignancies than in those with sold tumors (p = 0.018 and p < 0.001, respectively). Median time interval between palliative care referral and death was longer for patients less than 65 year old than those 65 years old or more (p = 0.03). Our results should help palliative care and oncology programs at comprehensive cancer centers plan how to develop joint programs for patient care.