Unobvious wounds: the suffering of hospice patients

Background: The suffering of palliative care patients is ordinarily thought of in terms of symptoms, and these are identified by medical terms (pain, nausea, depression). The problematic issue of relief of patients’ pain meaning the same thing as the ‘relief of the suffering and distress of terminally ill patients’ has been raised. Aim: The aim of this study was to estimate the frequency with which medically defined suffering matched the reported suffering of our patients. Methods: One hundred patients admitted to a hospice were asked ‘In what way are you suffering?’ The patients’ diagnoses, their pain scores and the reasons for admission as defined by the treating clinicians were recorded. The mean age of the patients was 68 years (range 28?93 years), 92 had advanced malignant disease and 51 were women. Results: Twenty‐four patients were unable to state the reason for hospice admission, but none had any uncertainty in identifying the nature of their own suffering. There was a weak correlation between the patient's view of their suffering and the reason for admission. The identification of pain as the cause of suffering was weakly correlated with pain scores. Some patients with pain scores of 8?10/10 did not mention pain as a cause of suffering, and others with scores of 0/10 did identify pain as the cause of suffering. Conclusion: Asking hospice patients about suffering in a simple open‐ended way can expose a different dimension of distress, and the views of the 100 patients of this study support the statement that relief of pain and relief of suffering are not the same. (Intern Med J 2004; 34: 604?607)     

临终关怀与和缓医疗

临终关怀与和缓医疗是以预期生命有限的患者及其家庭成员为中心,通过预测、预防和治疗患者的病痛,改善其生活质量.主要内容是对症状进行评估和处理、控制疼痛、进行家庭护理、减轻或消除患者的心理负担和消极情绪,帮助临终患者以舒适和有尊严的方式度过最后的时光.临终关怀不同于安乐死,即不促进也不延缓患者的死亡,而是贯穿于疾病治疗始终,重视患者生理、智力、情感、社会及精神需求,帮助患者保持自主性、获取信息并自主选择.和缓医疗是现代医学领域中新的边缘交叉性学科,是人口老龄化的需求和人类文明发展的标志;和缓医疗需要一个多学科的团队,需要良好的沟通技巧和专业技能.     

The intersection between geriatrics and palliative care: a call for a new research agenda

Palliative care is interdisciplinary treatment focused on the relief of suffering and achieving the best possible quality of life for patients and their caregivers. It differs for geriatric patients from what is usually appropriate in a younger population because of the nature and duration of chronic illness during old age. In spite of the fact that death occurs far more commonly in older people than in any age group, the evidence base for palliative care in older adults is sparse. Over the coming years, the research foci in the field of geriatrics and palliative care that must be addressed include establishing the prevalence of symptoms in patients with chronic disease; evaluating the association between treatment of symptoms and outcomes; increasing the evidence base for treatment of symptoms; understanding psychological well-being, spiritual well-being, and quality of life of patients and elucidating and alleviating sources of caregiver burden; reevaluating service delivery; adapting research methodologies specifically for geriatric palliative care; and increasing the number of geriatricians trained as investigators in palliative care research. This article discusses specific methods to improve the current situation within each of these seven areas.     

Hospice usage by minorities in the last year of life: results from the National Mortality Followback Survey

OBJECTIVES: To examine racial/ethnic variations in rates of hospice use in a national cohort and to identify individual characteristics associated with hospice use. DESIGN: Secondary analysis of the 1993 National Mortality Followback Survey (NMFS), a nationally obtained sample using death certificates and interviews with relatives (proxy respondents) to provide mortality, social, and economic data and information about healthcare utilization in the last year of life for 23,000 deceased individuals. SETTING: Hospice care. PARTICIPANTS: Individuals aged 15 and older who died in 1993. Subjects were included in this analysis if they died of nontraumatic causes (N = 11,291). MEASUREMENTS: Hospice use was dichotomized by proxy responses indicating use or nonuse of home or inpatient hospice services. The percentage of individuals using hospice services in the last year of life was calculated. RESULTS: Unadjusted bivariate results found that African Americans were less likely to use hospice than whites (odds ratio (OR) = 0.59; P <.001) and that those without a living will (LW) (OR = 0.23; P <.001) and without a cancer diagnosis (OR = 0.28; P <.001) were less likely to use hospice. The negative relationship between African Americans and hospice use was unaffected when controlled for sex, education, marital status, existence of a LW, income, and access to health care. Logistic models revealed that presence of a LW diminished the negative relationship between African Americans and hospice use, but the latter remained significant (OR = 0.83; P =.033). A subanalysis of subjects aged 55 and older showed a significant interaction between access to care and race/ethnicity with respect to hospice use (P =.044). Inclusion of income in this multivariable logistic model attenuated the relationship between African-American race/ethnicity and hospice use (OR = 0.77), and the difference between whites and African Americans became only marginally statistically significant (P =.060). CONCLUSION: In the 1993 NMFS, hospice use was negatively associated with African-American race/ethnicity independent of income and access to healthcare. The relationship is not independent of age, insurance type, or history of stroke. For subjects aged 55 and older, access to healthcare may be an important confounder of the negative relationship between African-American race/ethnicity and hospice use. Consistent with previous studies, this analysis found that African Americans were less likely to use LWs than whites. The reduced importance of African-American race/ethnicity on hospice use with the inclusion of presence of a LW in logistic models suggests that similar cultural processes may shape differences between African Americans and whites in advance care planning and hospice use.     

Rapid death after admission to palliative care

Background: Palliative care units provide non‐curative treatment and support to patients with terminal illness. Brief end‐of‐life admissions are disruptive for patients and their families, and increase staff stress. Extremely rapid deaths (survival <24 h from admission) are particularly challenging for all involved. From 1 January 2010 to 23 August 2011, 256 patients died on the Palliative Care Unit (Caritas Christi) at St Vincent's Hospital Melbourne. Forty‐two died within 24 h (16%), while 214 survived beyond 24 h (84%). Aims: A retrospective chart audit was conducted, aiming to identify factors characterising those patients who died within 24 h. Methods: Groups were compared for age, gender, country of birth, preferred language, ward of origin, primary pathology, time trends, whether an emergency code was called, Palliative Care Outcomes Collaboration (PCOC) phase, modified Karnofsky score and commencement of a syringe driver for medication. Results: Results showed that admission from neurosurgery (P= 0.0001), a vascular or infective pathology (P= 0.0001), PCOC phase ≥3 (P= 0.0001), modified Karnofsky score ≤20% (P= 0.0001), and commencement of a syringe driver prior to or at admission (P= 0.0001) were all significantly associated with death within 24 h of admission. On binary logistic regression, the only independent predictor of patients likely to die in <24 h from admission was PCOC phase ≥3 (P= 0.002). Conclusions: This study is designed to help clinicians identify patients likely to deteriorate rapidly. Alternative options could include earlier transfer to the palliative care unit or palliation on their home ward with palliative care consultation.     

Palliative care for patients with dementia: a national survey

OBJECTIVES: To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC. DESIGN: Telephone and Web‐based surveys. SETTING: U.S. hospice and PC programs from the National Hospice and Palliative Care Organization's program list. PARTICIPANTS: Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC. MEASUREMENTS: A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC. RESULTS: Ninety‐four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end‐of‐life care. CONCLUSION: Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible.     

宁养医疗服务与有尊严的死亡

随着科技的进步和文明的发展,临终与死亡问题越来越受到人们的关注。而医疗水平的提高以及人口的逐渐老龄化则使得终末期疾病患者的数量持续增加,病程延长。终末期患者的宁养医疗服务又称之为安宁缓和医疗,旨在最大程度的减轻患者的痛苦、避免无谓的治疗从而提高生活质量并做到有尊严的死亡。目前国内在该领域的研究起步较晚,投入尚嫌不足,存在许多亟待解决的问题。临床现状凸显了宁养服务的重要性和紧迫性,本文拟就相关问题做一阐述。     

Need for hospice and palliative care services in patients with end-stage heart failure treated with intermittent infusion of inotropes

BACKGROUND: Hospice and palliative care programs to relieve suffering and optimize management of terminally ill patients have grown rapidly in the United States. However, there are no data on the need for these services among patients with end-stage heart failure receiving intermittent infusion of intravenous inotropes. HYPOTHESIS: The need for hospice and palliative care programs among patients in end-stage heart failure who receive intermittent infusion of inotropes is investigated. METHODS: The study included all stable patients with refractory heart failure symptoms treated with inotropes in our outpatient unit. A total of 73 patients (65 +/- 12 years; left ventricular ejection fraction 22 +/- 9%; New York Heart Association class 3.6 +/- 0.4) were seen during a 49-month period. Of these, 35 patients (48%) met hospice or palliative care evaluation criteria upon referral but were offered, and accepted, the alternative of parenteral inotropes. In all, 1,737 individual outpatient treatment sessions were given, with a mean of 24 +/- 19 sessions per patient (range 5 to 118 sessions), representing a minimum of 9,948 h of inotrope therapy. RESULTS: A total of 18 (25%) patients died, 6 (8%) patients were withdrawn from the program (3 by their primary physicians and 3 because of significant travel limitations); 4 (5%) patients required continuous intravenous home therapy; and 44 (61%) patients were discharged with significant improvement in their heart failure symptoms. Only 7 of the 18 patients who died had received hospice or palliative care intervention, mainly for the sake of comfort and to ease the transition among family members. The rest of the patients were comfortable and had accepted the natural evolution of their disease; they were not interested in or did not require hospice or palliative care intervention. Of the patients discharged from the outpatient cardiac infusion unit, the interval free of heart failure symptoms after the final infusion treatment ranged from 201 to 489 days, with no need for hospitalization or emergency room visits. CONCLUSION: Our results demonstrate that intermittent infusion of intravenous inotropes can be safely administered and can improve symptoms in a significant number of patients, probably by slowing the natural progression of heart failure. Although the full clinical impact of inotrope therapy in an outpatient setting has not been fully defined, other nonhemodynamic-related benefits should be sought and investigated. Our results suggest that intermittent infusion of intravenous inotropes is one of the prominent variables that requires particular attention. In our experience, the institution of intermittent infusions of intravenous inotropes can, in fact, modify end-stage heart failure symptoms that, in most patients, are currently perceived to lead to a terminal event. Thus, appropriate use of intermittent infusion of intravenous inotropes may not only improve functional class and symptoms in a significant number of patients identified as terminal by their poor response to conventional therapy, but it may also facilitate better utilization of hospice and palliative care resources among patients with end-stage heart failure. Furthermore, the need for hospice and palliative care in patients with heart failure should be revisited in view of adjuvant treatment options such as intermittent infusion of intravenous inotropes.     

Our dementia challenge: arise palliative care

While many of the maladies of the 20th century are steadily coming under control, the march of neurodegenerative disorders continues largely unchecked. Dementias are an exemplar of such disorders; their incidence and prevalence continue to rise, in large part due to a steadily ageing population worldwide. They represent a group of chronic, progressive and, ultimately, fatal neurodegenerative diseases. Dementia has remained therapeutically recalcitrant. It is not a single disease, and because of that, we cannot expect a single panacea. While primary prevention rightly gains prominence, those with established disease currently require a shift in focus from curative intent towards improved quality of life. Enter palliative care. The sheer number and complexity of needs of patients with dementia, from the physical to the psychosocial and spiritual, necessitates the engagement of a wide range of medical disciplines, nursing and allied health professionals. One of those disciplines, as highlighted in the recent Australian Royal Commission into Aged Care Quality and Safety, is palliative care. This paper shall expand upon that role in the overall context of care for those with dementia.     

Hospice use and outcomes in nursing home residents with advanced dementia

OBJECTIVES: To identify characteristics of nursing home (NH) residents with advanced dementia and their healthcare proxies (HCPs) associated with hospice referral and to examine the association between hospice use and the treatment of pain and dyspnea and unmet needs during the last 7 days of life. DESIGN: Prospective cohort study. SETTING: Twenty‐two Boston‐area NHs. PARTICIPANTS: Three hundred twenty‐three NH residents with advanced dementia and their HCPs. MEASUREMENTS: Data were collected at baseline and quarterly for up to 18 months. Hospice referral, frequency of pain and dyspnea, and treatment of these symptoms was ascertained. HCPs reported unmet needs during the last 7 days of the residents' lives for communication, information, emotional support, and help with personal care. RESULTS: Twenty‐two percent of residents were referred to hospice. After multivariable adjustment, factors associated with hospice referral were nonwhite race, eating problems, HCP's perception that the resident's had less than 6 months to live, and better HCP mental health. Residents in hospice were more likely to receive scheduled opioids for pain (adjusted odds ratio (AOR)=3.16; 95% confidence interval (95% CI)=1.57–6.36) and oxygen, morphine, scopolamine, or hyoscyamine for dyspnea (AOR=3.28, 95% CI=1.37–7.86). HCPs of residents in hospice reported fewer unmet needs in all domains during the last 7 days of the residents' life. CONCLUSION: A minority of NH residents with advanced dementia received hospice care. Hospice recipients were more likely to received scheduled opioids for pain and symptomatic treatment for dyspnea and had fewer unmet needs at the end of life.     

Report of the Geriatrics-Hospice and Palliative Medicine Work Group: American Geriatrics Society and American Academy of Hospice and Palliative Medicine leadership collaboration

Although the fields of hospice and palliative medicine and geriatrics have developed from separate origins, they share much in common. They share concerns for optimizing care of older adults with advanced illness. They both seek to address the common problem of care fragmentation for those with chronic illness. Both subspecialties see the patient and their loved ones as a unit requiring thoughtful, integrated care, rather than seeing the patient as a cluster of organ systems and conditions. The fields also share many core principles, including an emphasis on interdisciplinary care and care coordination. As increasing emphasis is placed on the medical home, chronic and advanced illness care, and systems changes to decrease care fragmentation, geriatrics and hospice and palliative medicine stand to benefit by blending efforts and common interests to improve care for patients and their loved ones. In 2009, a collaborative effort was begun involving the leadership of the American Geriatrics Society, the American Academy of Hospice and Palliative Medicine, and the John A. Hartford Foundation. The goal of the collaboration was to convene leaders in geriatrics and hospice and palliative medicine to identify areas of potential synergy between the two subspecialties and to design a plan for exploring and developing these areas of common interest. This article describes the progress of the collaborative effort to date.     

The development of a palliative care program for managed care patients: a case example

Palliative care is emerging as an important new field. Although programs are developing in hospital environments, little is known about development of programs in outpatient practices or those serving large managed care populations. This article provides a framework for the development of a comprehensive palliative care program in a large multispecialty group practice that serves managed care patients. The article addresses guiding principles, the need for obtaining baseline data, how the clinical consultation service was established, development of outcomes measures, and information on current program status. Five themes emerged as key to successful program development, most importantly the close collaboration between administrative and clinical staff in all aspects of program development.     

Anger in palliative care: a clinical approach

Anger in patients and families is a common problem in the care of persons with advanced disease. Whereas it is widely accepted that anger may be a justifiable reaction to significant illness and loss, it frequently creates difficulties for the doctors involved in care. In particular, there is often a personal impact on the doctor at whom anger is directed. This paper examines results of qualitative research with palliative care workers in the context of the broader published literature and the authors' clinical experiences. The ability to interact effectively with angry patients is a skill that is often learned with experience and is extremely useful in both transforming the patients' reaction into a more creative emotion and in developing a therapeutic relationship. Despite conscientious efforts, however, a few patients continue to be angry. A practical approach to anger, useful for the clinician directly involved in care, is outlined along with some strategies to adopt in the face of persistent anger.     

Prescribing in palliative care as death approaches

OBJECTIVES: To determine how prescribing for comorbid illnesses and symptom control changes during the palliative phase of a terminal illness. DESIGN: This prospective cohort study explores the relative contribution to prescribing of symptom-specific medications (SSMs) and long-term medications for comorbid medical conditions. SETTING: Regional consultative palliative care program, Adelaide, South Australia. PARTICIPANTS: Two hundred sixty consecutive patients, 96% of whom had cancer, who enrolled and subsequently died in a larger randomized trial exploring palliative service delivery. MEASUREMENTS: Medication and performance data were collected monthly from referral until death (mean 107 days, median 93 days, standard deviation (SD) 103 days, range 11-752 days). Prespecified subgroup analyses of age, performance status, and the baseline use of medications for comorbid medical conditions were performed. RESULTS: At baseline, the mean total number of medications+/-SD was 4.9+/-2.8 (range 0-16), SSMs was 2.3+/-1.5 (range 0-7), and medications for comorbid medical conditions was 2.6+/-2.4 (range 0-13). As death approached, the total number of medications increased because of SSM prescribing (2.5 more medications, 95% confidence interval (CI)=2.2-2.9; P<.001) with a decrease in medications for comorbid medical conditions (1.1 fewer medications, 95% CI=0.8-1.3; P<.001). There was an increase in the number of medications meeting Beers' criteria for high-risk inappropriate medication use for SSMs (29% to 48%). More SSMs were prescribed in people with better performance status, and older participants took more medications for comorbid medical conditions. CONCLUSION: Prescribing changes as life-limiting illnesses progress, with older people taking more medications. Medications for comorbid medical conditions should be reviewed in the context of their original therapeutic goals.     

Referral to specialist palliative care

Recent literature has suggested that earlier referral to palliative care can improve quality of life and prognosis. The decision to refer to palliative care is a complex process that can involve an interplay of interpersonal, subjective and institutional factors. Negotiating this referral process can be challenging to a medical specialist from a professional and personal viewpoint. What remains unknown is what actually influences the individual clinician to refer a patient to palliative care.     

Perspectives on advance care planning and palliative care among adults with congenital heart disease

Background: Patients with adult congenital heart disease (ACHD) report that ad‐ vance care planning (ACP) is important, and that they want information about prog‐ nosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill‐defined.
Methods: We conducted a cross‐sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facili‐ tators to these discussions.
Results: The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care preferences; and 91% to speak to a clinician who specializes in palliative care. Being married and anticipating a shorter lifespan were associated with increased reported willingness to participate in ACP. The health care provider with whom most participants preferred to have these discussions was their ACHD clinician. Participants identified important barriers and facilitators to these discussions.
Conclusion: Patients with ACHD report being willing to participate in ACP and pallia‐ tive care discussions. Patients prefer to have these discussions with their ACHD clini‐ cians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.