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1.

Objective

To discuss the importance, current status and directions for improvement of advance care planning and communication about end-of-life care for patients with Chronic Obstructive Pulmonary Disease (COPD).

Methods

Narrative review of the currently available literature regarding advance care planning and communication about end-of-life care in COPD.

Results

Advance care planning, including patient-clinician communication about end-of-life care, can improve outcomes for patients and their families and may be particularly important for patients with COPD. Patient-clinician communication is needed to inform and prepare patients about their diagnosis, treatment, prognosis, and what dying might be like. It is necessary to help patients and their clinicians understand patient preferences for life-sustaining treatments. Despite these advantages, advance care planning and conversations about end-of-life care in current practice are limited and their quality is often poor.

Conclusion

Advance care planning can improve outcomes for patients and their relatives. Recent studies provide directions for how to facilitate advance care planning for patients with COPD.

Practice implications

Advance care planning ought to be part of care for patients with advanced COPD. Future studies should focus on interventions to facilitate advance care planning in patients with COPD with the goal of improving the quality of end-of-life care.  相似文献   

2.
OBJECTIVE: This essay identifies elderly cancer patients as a population that experiences cancer-related health disparities at the end-of-life. METHODS: While hospice and palliative care (PC) are care options for this population, it is argued that PC prior to hospice will yield numerous benefits for long-term end-of-life care. RESULTS: It is theorized that PC prior to hospice will be beneficial in meeting the family's needs in a timely and adequate manner, improving quality of life, increasing caregiver satisfaction and communication, possibly delay institutionalization of the patient, and may ultimately impact bereavement. CONCLUSION: Patients would be able to benefit from PC in an early stage of their disease, positively influencing older cancer patients and families. PRACTICE IMPLICATIONS: Long-term assessment of the impact of PC prior to hospice is proposed as a promising direction of future research.  相似文献   

3.
Chronic obstructive pulmonary disease (COPD) is a chronic respiratory illness with a myriad of disabling symptoms and a decline in the functional parameters that affect the quality of life. The mortality and morbidity associated with severe COPD is high and the patients are mostly housebound and in need of continuous care and support. The uncertain nature of its prognosis makes the commencement of palliative care and discussion of end-of-life issues difficult even in the advanced stage of the disease. This is often compounded by inadequate communication and counseling with patients and their relatives. The areas that may improve the quality of care include the management of dyspnea, oxygen therapy, nutritional support, antianxiety, and antidepressant treatment, and advance care planning. Hence, it is necessary to pursue a holistic care approach for palliative care services along with disease-specific medical management in all such patients to improve the quality of life in end-stage COPD.  相似文献   

4.
BACKGROUND: Communication with patients on end-of-life decisions is a delicate topic for which there is little guidance.AIM: To describe the development of a guideline for GPs on end-of-life communication with patients who wish to die at home, in a context where patient autonomy and euthanasia are legally regulated. DESIGN OF STUDY: A three-phase process (generation, elaboration and validation). In the generation phase, literature findings were structured and then prioritised in a focus group with GPs of a palliative care consultation network. In the elaboration phase, qualitative data on patients' and caregivers' perspectives were gathered through a focus group with next-of-kin, in-depth interviews with terminal patients, and four quality circle sessions with representatives of all constituencies. In the validation phase, the acceptability of the draft guideline was reviewed in bipolar focus groups (GPs-nurses and GPs-specialists). Finally, comments were solicited from experts by mail. SETTING: Primary home care in Belgium. SUBJECTS: Participants in this study were terminal patients (n = 17), next-of-kin of terminal patients (n = 17), GPs (n = 25), specialists (n = 3), nurses (n = 8), other caregivers (n = 2) and experts (n = 41). RESULTS: Caregivers and patients expressed a need for a comprehensive guideline on communication in end-of-life decisions. Four major communication themes were prioritised: truth telling; exploration of the patient's wishes regarding the end of life; dealing with disproportionate interventions; and dealing with requests for euthanasia in the terminal phase of life. Additional themes required special attention in the guideline: continuity of care by the GP; communication on foregoing food and fluid; and technical aspects of euthanasia. CONCLUSION: It was feasible to develop a guideline by combining the three cornerstones of evidence-based medicine: literature search, patient values and professional experience.  相似文献   

5.
Patient centered palliative cancer care would imply, first, the introduction of psychosocial endpoints when evaluating treatment and making decisions. Second, patient control would have to be enhanced by information giving and increased decision involvement. We have indicated that paradoxes exist when a patient centered approach is advocated in the context of palliative cancer care. So-called patient oriented outcomes, like quality of life, once introduced seem to be disregarded by many patients themselves and survival is given a more important weight. Likewise, physicians seem to be inclined to treat patients aggressively for little benefit rather than providing supportive care. Both parties seem to prefer to do something actively to maintain a semblance of control over the disease process. Giving treatment, even if aggressive, is a way to avoid the confrontation with the little efficacy that the physician has to offer to incurable cancer patients. This mechanism is reflected in the content of conversations in palliative care. Patient centered care would imply that patient control and autonomy are enhanced. However, again paradoxically, many patients seem to want to avoid information and leave the decisions to be made by their doctors. Physicians, then, follow such wishes while paying more attention to aggressive therapy than to the notion of watchful waiting. This may help to avoid the painful confrontation with bad news. Dilemmas then remain. Patients wishing to maintain hope and avoid emotional impact of a full understanding of their prognosis may rather not be informed brusquely about prognosis or the aims of supportive therapy and forced to make an informed decision. However, by giving more aggressive, maybe even futile, treatment, and withholding supportive care patients may receive less than 'quality end-of-life care'. Therefore, information about less intrusive strategies should still be given in a cautious manner, while regarding the patient's defenses respectfully.  相似文献   

6.
BACKGROUND: New out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important. AIM: To explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers. DESIGN OF STUDY: Qualitative, community-based study using in-depth interviews, focus groups and telephone interviews. SETTING: Urban, semi-urban and rural communities in three areas of Scotland. METHOD: Interviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals. RESULTS: Patients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services. CONCLUSIONS: Service configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements are needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups.  相似文献   

7.

Background

Chronic obstructive pulmonary disease (COPD) guidelines recommend early access to palliative care together with optimal, disease-directed therapy for people with advanced disease, however, this occurs infrequently. This study explored the approaches of respiratory and palliative medicine specialists to palliative care and advance care planning (ACP) in advanced COPD.

Methods

An online survey was emailed to all specialists and trainees in respiratory medicine in Australia and New Zealand (ANZ), and to all palliative medicine specialists and trainees in ANZ and the United Kingdom.

Results

Five hundred seventy-seven (33.1%) responses were received, with 440 (25.2%) complete questionnaires included from 177 respiratory and 263 palliative medicine doctors. Most respiratory doctors (140, 80.9%) were very or quite comfortable providing a palliative approach themselves to people with COPD. 113 (63.8%) respiratory doctors recommended referring people with advanced COPD to specialist palliative care, mainly for access to: psychosocial and spiritual care (105, 59.3%), carer support (104, 58.5%), and end-of-life care (94, 53.1%). 432 (98.2%) participants recommended initiating ACP discussions. Palliative medicine doctors were more likely to recommend discussing: what palliative care is (p <?0.0001), what death and dying might be like (p?<?0.0001) and prognosis (p =?0.004). Themes highlighted in open responses included: inadequate, fragmented models of care, with limited collaboration or support from palliative care services.

Conclusions

While both specialties recognised the significant palliative care and ACP needs of people with advanced COPD, in reality few patients access these elements of care. Formal collaboration and bi-directional support between respiratory and palliative medicine, are required to address these unmet needs.
  相似文献   

8.

Background  

The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO)' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated.  相似文献   

9.
ObjectiveTo identify preferences of advanced lung cancer patients for receiving information and participating in decision-making concerning treatment options, health-care-setting transfers and end-of-life decision-making.MethodsOver the course of 1 year, pulmonologists and oncologists in 13 hospitals in Flanders, Belgium, invited patients with an initial diagnosis of non-small-cell lung cancer IIIb/IV to participate in the study. Shortly after inclusion, the patients were interviewed with a structured questionnaire.ResultsOne-hundred and twenty-eight patients with a median estimated survival time of 10 months participated. Almost all wanted information on diagnosis, treatment and cure rate and slightly fewer on life expectancy (88.2%). Information about palliative care was desired by 63.5% of patients and information about end-of-life decisions by 56.8%. The percentage of patients who preferred personal control over medical decision-making increased to 14.8% for treatment, 25.0% for transfer and 49.2% for end-of-life decisions, all of which were higher than for medical decisions in general (9.3%).ConclusionInformation and participation preferences of advanced lung cancer patients differ depending on the type of information or decision.Practice implicationsAs part of a patient-centred approach, physicians should not only check the general but also the specific information and participation preferences of their patients.  相似文献   

10.

Background

COPD is a progressive lung disorder with rates of mortality between 36–50%, within 2 years after admission for an acute exacerbation. While treatment with inhaled bronchodilators and steroids may partially relieve symptoms and oxygen therapy may prolong life, for many patients the course of the disease is one of inexorable decline. Very few palliative care intervention studies are available for this population. This trial seeks to determine the effectiveness of the introduction of specialized palliative care on hospital, intensive care unit and emergency admissions of patients with severe and very severe COPD.

Methods/Design

The study is a three year single centre, randomized controlled trial using a 2 arms parallel groups design conducted in a tertiary center (University Hospitals; Geneva). For the intervention group, an early palliative care consultation is added to standard care; the control group benefits from standard care only. Patients with COPD defined according to GOLD criteria with a stage III or IV disease and/or long term treatment with domiciliary oxygen and/or home mechanical ventilation and/or one or more hospital admissions in the previous year for an acute exacerbation are eligible to participate. Allocation concealment is achieved using randomisation by sealed envelopes. Our sample size of 90 patients/group gives the study a 80% power to detect a 20% decrease in intensive care unit and emergency admissions – the primary endpoint. All data regarding participants will be analysed by a researcher blinded to treatment allocation, according to the "Intention to treat" principle.

Discussion

Given the trends toward aggressive and costly care near end-of-life among patients with COPD, a timely introduction of palliative care may limit unnecessary and burdensome personal and societal costs, and invasive approaches. The results of this study may provide directions for future palliative care interventions in this particular population.

Trial registration

This trial has been registered at clinicaltrials.gov under NCT02223780
  相似文献   

11.
PURPOSE: High-quality palliative care requires physicians who communicate effectively, yet many do not receive adequate training. Leading efforts to demonstrate the effectiveness of such training have involved time-intensive programs that included primarily attending physicians, which have been conducted outside of the United States. The goal was to evaluate the effect of a short course to improve residents' communication skills delivering bad news and eliciting patients' preferences for end-of-life care. METHOD: This prospective trial enrolled internal medicine residents at Duke University Medical Center from 1999 to 2001. The course consisted of small-group teaching with lecture, discussion, and role-play. The outcome measure was observed communication skills delivering bad news and eliciting patients' preferences for end-of-life treatment, assessed via audio-recorded standardized patient encounters before and after receiving the intervention. RESULTS: Thirty-seven residents received the intervention and 19 were in the control group. Residents attending the course demonstrated statistically significant increases in their overall skill ratings in the delivery of bad news, with improvement in the specific areas of information giving and responding to emotional cues. Although cumulative scores for discussions about patient preferences for treatment did not increase, residents demonstrated enhanced specific skills including discussing probability, presenting clinical scenarios, and asking about prior experience with end-of-life decision making. CONCLUSION: A relatively short, intensive course can improve the end-of-life communication skills of U.S. medical residents.  相似文献   

12.
The potential for long-term support on a ventricular assist device (VAD) in the bridge-to-transplant (BTT) and destination therapy (DT) settings has created unprecedented ethical challenges for patients and caregivers. Concerns include the patient's adaptation to life on a device and the ethical, clinical, and practical issues associated with living on mechanical support. On the basis of our experience treating 175 consecutive VAD patients, we have developed a model to address the ethical and psychosocial needs of patients undergoing VAD implantation. Patient preparation for VAD implantation encompasses three phases: 1) initial information regarding the physical events involved in implantation, risks and benefits of current device technology, and the use of VAD as a rescue device; 2) preimplant preparation including completion of advance directives specific to BTT/DT, competency determination, and identifying a patient spokesperson, multidisciplinary consultants, and cultural preferences regarding device withdrawal; and 3) VAD-specific end-of-life issues including plans for device replacement and palliative care with hospice or device withdrawal. This three-phase 10-point model addresses the ethical and psychosocial issues that should be discussed with patients undergoing VAD support.  相似文献   

13.

Background  

Comprehensive "Total Pain" assessments of patients' end-of-life needs are critical for providing improved patient-clinician communication, assessing needs, and offering high quality palliative care. However, patients' needs-based research methodologies and findings remain highly diverse with their lack of consensus preventing optimum needs assessments and care planning. Mixed-methods is an underused yet robust "patient-based" approach for reported lived experiences to map both the incidence and prevalence of what patients perceive as important end of life needs.  相似文献   

14.
OBJECTIVE: To describe the attitudes towards truth-telling of both terminal patients and professional caregivers, and to determine their perceived barriers to full information exchange. METHODS: In-depth interviews with 17 terminal patients selected through GPs and staff members of Flemish palliative care centres, and 3 focus groups with different professional caregivers. Analysis was based on grounded theory. RESULTS: There was considerable variability in the preferences of patients regarding when and how they wanted to be informed of their diagnosis, prognosis, expected disease course and end-of-life decisions. Major ambivalence was observed regarding the degree to which patients wanted to hear 'the whole truth'. Patients and caregivers agreed that truth-telling should be a 'dosed and gradual' process. Several barriers to more complete and timely truth-telling were identified. CONCLUSION: The preferences of both patients and caregivers for step-by-step--and hence slow and limited--information prevents terminal patients from reaching the level of information needed for informed end-of-life decision-making. PRACTICE IMPLICATIONS: The preference of patients and caregivers to 'dose' the truth may entail some risks, such as a 'Catch 22' situation in which both patients and caregivers wait for a signal from each other before starting a dialogue about impending death.  相似文献   

15.

Background

Calls for better end-of-life care for advanced chronic obstructive pulmonary disease (COPD) reflect the large number who die from the disease and their considerable unmet needs.

Aim

To determine palliative care needs in advanced COPD.

Design

Cross-sectional interview study in patients’ homes using structured questionnaires generated from 44 south London general practices.

Method

One hundred and sixty-three (61% response) patients were interviewed, mean age 72 years, 50% female, with diagnosis of COPD and at least two of: forced expiratory volume in the first second (FEV1) <40% predicted, hospital admissions or acute severe exacerbations with COPD, long-term oxygen therapy, cor pulmonale, use of oral steroids, and being housebound. Patients with advanced cancer, severe alcohol-related or mental health problems, or learning difficulties, were excluded; 145 patients were included in the analysis.

Results

One hundred and twenty-eight (88%) participants reported shortness of breath most days/every day, 45% were housebound, 75% had a carer. Medical records indicated that participants were at least as severe as non-participants. Eighty-two (57%) had severe breathlessness; 134 (92%) said breathlessness was their most important problem; 31 (21%) were on suboptimal treatment; 42 (30%) who were severely affected had not been admitted to hospital in the previous 2 years; 86 of 102 who had been admitted would want admission again if unwell to the same extent. None expressed existential concerns and few discussed need in terms of end-of-life care, despite severe breathlessness and impairment.

Conclusion

Needs in advanced COPD were considerable, with many reporting severe intractable breathlessness. Palliation of breathlessness was a priority, but discussion of need was seldom in terms of ‘end-of-life care’.  相似文献   

16.

Background

Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care.

Aim

To obtain detailed information on facilitators and barriers for GP–patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills.

Design of study

Qualitative study with focus groups, interviews, and questionnaires.

Setting

GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands.

Method

GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers.

Results

Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors'' delay and strong demands from patients'' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor–patient relationships, while consultants report insufficient clarification of patients'' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios.

Conclusion

The study findings suggest that the quality of GP–patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated.  相似文献   

17.
18.
This article presents recommendations for improving the education of physicians about end-of-life care in the acute care hospital setting. The authors, who have a variety of backgrounds and represent several types of institutions, formulated and reached consensus on these recommendations as members of the Acute Care Hospital Working Group, one of eight working groups convened at the National Consensus Conference on Medical Education for Care Near the End of Life in May 1997. A recently published literature review on the status of palliative care education, a summary of recent research on education about end-of-life care, and expert opinion were helpful in developing the recommendations. The authors emphasize that the acute care setting offers many opportunities for education about care at the end of life. Faculty should support learners' appreciation of the importance of end-of-life care, and convey the meaning and privilege of attending to patients and families at this difficult time. Faculty should teach students and residents to provide care that embodies attention to the control of distressing physical, physiologic, and spiritual symptoms, appropriate awareness of patients' differing cultural backgrounds and their impact upon the experience of dying, excellent communication skills, the application of bioethical principles, timely referral and smooth transition to other care settings that meet patient and family goals, and the role of the interdisciplinary team in meeting the diverse needs of dying patients and their families.  相似文献   

19.

Background

Our aim was to obtain a clearer picture of the relevant care experiences and care perceptions of incurably ill Turkish and Moroccan patients, their relatives and professional care providers, as well as of communication and decision-making patterns at the end of life. The ultimate objective is to improve palliative care for Turkish and Moroccan immigrants in the Netherlands, by taking account of socio-cultural factors in the guidelines for palliative care.

Methods

A systematic literature review was undertaken. The data sources were seventeen national and international literature databases, four Dutch journals dedicated to palliative care and 37 websites of relevant national and international organizations. All the references found were checked to see whether they met the structured inclusion criteria. Inclusion was limited to publications dealing with primary empirical research on the relationship between socio-cultural factors and the health or care situation of Turkish or Moroccan patients with an oncological or incurable disease. The selection was made by first reading the titles and abstracts and subsequently the full texts. The process of deciding which studies to include was carried out by two reviewers independently. A generic appraisal instrument was applied to assess the methodological quality.

Results

Fifty-seven studies were found that reported findings for the countries of origin (mainly Turkey) and the immigrant host countries (mainly the Netherlands). The central themes were experiences and perceptions of family care, professional care, end-of-life care and communication. Family care is considered a duty, even when such care becomes a severe burden for the main female family caregiver in particular. Professional hospital care is preferred by many of the patients and relatives because they are looking for a cure and security. End-of-life care is strongly influenced by the continuing hope for recovery. Relatives are often quite influential in end-of-life decisions, such as the decision to withdraw or withhold treatments. The diagnosis, prognosis and end-of-life decisions are seldom discussed with the patient, and communication about pain and mental problems is often limited. Language barriers and the dominance of the family may exacerbate communication problems.

Conclusions

This review confirms the view that family members of patients with a Turkish or Moroccan background have a central role in care, communication and decision making at the end of life. This, in combination with their continuing hope for the patient’s recovery may inhibit open communication between patients, relatives and professionals as partners in palliative care. This implies that organizations and professionals involved in palliative care should take patients’ socio-cultural characteristics into account and incorporate cultural sensitivity into care standards and care practices.
  相似文献   

20.
OBJECTIVE: LCME has recently required that all graduating medical students learn about end-of-life care. This program describes the design and integration into an existing geriatrics clerkship of a palliative care module that teaches the foundations of end-of-life and palliative care to medical students. DESCRIPTION: Faculty experts in geriatrics met during a series of weekly meetings in 1999 to design a mandatory four-week-long clinical clerkship in geriatrics. Since the palliative care program is based within the geriatrics department, faculty members with interest and expertise in both geriatrics and palliative care were invited to design a palliative care module that can be integrated into the clerkship. Since LCME does not specify details of what students must learn about end-of-life care, and our goal is to educate and prepare students for any chosen specialty, we wanted to design a basic core curriculum in palliative care that would be useful to any graduating student. After reviewing potential palliative care topics, and given limited curriculum time, we condensed the medical student core curriculum to the following sessions: (1) Systematic Pain Assessment Management, (2) Management of Distressing Symptoms, (3) Communicating Bad News, and (4) Advance Directives. We developed PowerPoint presentations, teaching case vignettes, and a set of reference articles, which can be distributed to students as well as to help faculty teachers prepare for the sessions. Teaching sessions occur in small groups, using case discussions and interactive lectures. Sessions 3 and 4 are co-facilitated by palliative care physicians and ethicists, who use role-plays, reflections, and discussions to teach the topics. At the end of the clerkship, students practice these communication skills with videotaped standardized patient encounters, and debrief with faculty members about their performances and ways to improve their communication skills. DISCUSSION: Palliative care sessions are welcomed by the students, who traditionally have not received much teaching in this area. Even though students have learned about mechanisms regulating pain and other symptoms in the past, they have not learned to assess or treat symptoms in a systematic way. Students often have good questions about the decision-making, legal, and ethical issues that emerge for patients near the end of life. Thus, co-facilitation of physicians with ethicists presents both the practical clinical and the theoretical perspectives, and provides a good model for team teaching. In terms of teaching style, students are more involved and participatory when teachers use case vignettes as compared with slide presentations, even if they are case-based. When using role-plays to teach students how to communicate bad news, we found that students need to feel safe in that environment, need to know they can call for time out when necessary, and want to have seen one done before they are asked to do one.  相似文献   

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