State of the art 2007

The beginning of the modern hospice movement and palliative medicine relates to the recognition of the fact that a cure-oriented health care system often neglects the critically ill and the dying in terms of appropriate treatment and human care. Therefore, the idea was born to offer comprehensive medical, nursing, psychological, social and spiritual care for these patients and their families at a suitable location . This first location was St Christopher's Hospice in London; the starting point of a still ongoing humanly and ethically demanded development.     

National survey of palliative care in end-stage renal disease in the UK.

BACKGROUND: Palliative care for patients with end-stage renal disease (ESRD) is a neglected aspect of nephrology. We carried out this survey to establish the current pattern of provision of palliative care for ESRD in the UK. METHODS: An anonymous but numbered questionnaire concerning local palliative care provision was sent to clinical directors of all 69 UK renal units. RESULTS: All the questionnaires were returned. Only 27 (39%) units employ nursing or Professions Allied to Medicine (PAM) staff with palliative care for ESRD patients as a specified part of their role. In 19 of these units, staff spend <4 h per week concerned with palliative care and only five units have staff working for >12 h a week in this role. Fifty-five (80%) units do not have a written protocol for palliative care. Anaemic ESRD patients with an expected survival of >3 months receive blood transfusion in 59 (86%) units, intravenous iron in 61 (88%) units and erythropoietin in 63 (91%) units. Only 37 (54%) units kept a record of patients seen by the unit staff but deemed not suitable for dialysis. CONCLUSION: There is a significant variation in provision of palliative care services across the UK. In some areas, access to palliative care is restricted to patients with malignant disease, and ESRD patients are excluded.     

Palliativmedizinische Kompetenz im Rettungsdienst?

Emergency medicine is a symbol of fighting against death; palliative medicine will improve quality of life in face of unavoidable or permitted dying. Both methods seem to be incompatible. And yet emergency teams are confronted with situations, which need no curative but palliative aims in therapy. Case reports demonstrate possible conflicts. Juridical statements don’t solve the problems, but lead emergency doctors to act without or against patient’s agreement or in an ethically doubtful manner. Emergency medicine is indicated to avoid life-threatening events or if prognosis is unclarified. Palliative medicine must be realized in rescue service too, when suffering is to be relieved or patient must be accompanied in dying. Emergency doctors need palliative competence to differentiate which way of treatment is indicated for a particular patient.     

Palliative medicine: medical and psychological aspects

Palliative medicine is a speciality aimed at controlling symptoms for patients with life-limiting illnesses. Palliative medicine is not just for people who are dying; rather it is a component of care for patients with a life-limiting illness. It manages symptoms in a holistic manner addressing a patient's physical, psychological, social and spiritual needs. This article gives an overview of the principles of palliative medicine and guidance on management of frequently seen symptoms, emergencies and end of life care.     

Medical and psychological aspects of palliative medicine

Palliative medicine/palliative care is a speciality aimed at symptom control in patients with life-limiting illnesses. Palliative medicine no longer focuses on care of the dying only but is an integral part of the management of patients with a life-limiting illness. It approaches symptom control in a holistic manner addressing a patient’s physical, psychological, social and spiritual needs. This article aims to give an overview of the principles of palliative medicine and guidance on management of particular, frequently seen symptoms, emergencies and end of life care.     

社区临终关怀护理中护士所面对的伦理冲突及对策

目的：探讨社区临终关怀护理中护士所面对的伦理冲突并提出相关的对策。方法以本社区卫生服务中心2012年4月~2014年4月期间的100位临终患者为研究对象,了解他们关于与临终关怀护理有关的一些观念,同时与护士中和临终关怀护理相关的伦理观念结合进行分析。结果在患者的病情告知途径方面,主要是医生和患者家属;在对病情的告知方面,92%的患者都希望能被告知;在死亡观方面,患者都呈现出消极、回避的态度。结论护士内在的伦理道德在对临终患者进行护理的过程中容易和临终关怀的伦理产生冲突,必须采取必要对策来解决这一问题,以便更好地为临终患者提供临终关怀护理服务。     

Experience with a Hospice-care Program for the Terminally Ill

A hospice-care program offers an opportunity to provide effective palliative care for patients terminally ill with malignant disease and to develop improved methods for coping with the problems of the dying patient. All patients for whom antitumor therapy does not offer a reasonable possibility of cure are eligible for Church Hospital's multidisciplinary program, the focus of which is on both the patient and his family. Acceptance by medical staff, patients and families has been enthusiastic. Both conventional and unconventional methods can be helpful in making terminally ill patients more comfortable. Much has been learned about the control of pain in such patients. Intestinal obstruction can often be managed non-operatively without the use of nasogastric tube. Other common symptoms such as weakness, anorexia, depression, dyspnea, etc. can be relieved with varying degrees of success. An objective of the program is to allow the patient to be at home for most of his terminal illness and to die there if possible. By utilizing patient and family instruction, visiting nurses and home health aides, approximately two-thirds of the patients in the program at any given time are at home. Basing the program in an acute care hospital has allowed coordination with the curative treatment of malignant disease and effective use of radiation and chemotherapy for palliative purposes. The organizational structure, financing, facilities and clinical experience with 100 consecutive patients of the Church Hospital hospice-care program are described.     

泉州地区医护人员临终关怀态度及影响因素分析

目的了解泉州地区医护人员的临终关怀态度,分析其影响因素,为提升医护人员临终关怀水平提供参考。方法采用自制医护人员临终关怀态度量表对泉州市不同级别医院的临床医护人员238名进行调查。结果医护人员临终关怀态度得分为102.73±11.41,经逐步回归分析,工作年限、临终关怀知识来源种类、最近一年内治疗或护理过治愈无望的终末期患者数量、经历亲友离世是影响医护人员临终关怀态度的主要因素(均P0.05)。结论医护人员临终关怀态度较正向,影响医护人员临终关怀态度的因素较多,可加强国内外的文化交流及加强继续教育或相关培训,结合治疗和护理末期患者的经历、个人亲身体会,宣传临终关怀理念,以提供优质临终关怀服务。     

Notärztliche Betreuung von Tumorpatienten in der finalen Krankheitsphase

Background

Presently and even more in the near future more cancer patients will be treated at home especially in the final stage of their disease. For this reason the prehospital emergency system will be confronted with the specific needs of these patients. Palliative care is not part of the German model of post-graduate training regulations for emergency medicine and palliative care teams (PCT) are only involved in the treatment of cancer patients in emergency situations.

Methods

Over a 12-month period we retrospectively analysed all emergency cases that had been categorised as final cancer stage at 2 emergency sites (one air-based, the other ground-based) involving physicians in an out-of-hospital setting. We analysed all cases for indications of emergency call, prehospital treatment and involvement of a PCT in the treatment of symptoms.

Results

For this period we analysed 2,765 emergency documents and identified more than 2.5% as emergency calls by cancer patients or their relatives (the majority of patients had been in the final stage of the disease). Most emergency calls occurred at times when no general practitioner was on duty and acute dyspnoea (42.7%) was the prominent diagnosis. After emergency treatment 61.8% patients had been admitted to hospital. In most settings a PCT was not involved in the treatment of palliative care patients or their relatives (92.7%).

Conclusions

Our data demonstrate that care of cancer patients in the final stage of the disease is relevant in emergency medicine. These patients are in need of help based on principles of palliative care. Under these circumstances cooperation of the medical disciplines (emergency and palliative medicine) concerned seems to be necessary. This may increase the possibility for patients to stay at home for the last days of their life. Because of this we are convinced that basic knowledge of palliative care should be integrated into the German model of post-graduate training regulations for emergency care. Combining parts of the curricula (palliative and emergency medicine) it would be possible for emergency physicians to guide their treatment by the ideas and strategies of palliative care. But we are also convinced that the system of PCT should increase and become more involved in prehospital care in emergency cases of palliative care patients.     

Anaesthesia and palliative care

Palliative medicine provides end-of-life care to terminally ill patients with a focus on pain and symptom management, psychosocial and spiritual support and bereavement follow-up. This article reviews some of the more recent literature on the subject of palliative care focusing on educational barriers to quality palliative care, advances in quality assessment, and advances in pain and symptom management.     

Reality of dying in conditions of Preshov region

Dying, but not the death, is an essential problem. The more we believe that death ends everything, the more we fear from death. All religions want to cut this fear. They highlight that present life continues and human spirit lives further on, in another postmortem dimension. Authors evaluated death of 142 patients, among which 45 (32%) died at home, 74 (52%) in hospital, 34 (24%) among family relatives and 56 (39%) without the presence of relatives. Most of the dying patients wish to stay with their family. If this wish cannot be fulfilled, then a palliative care seems to be the most suitable alternative for an individual in terminal stage in modern society. In the Preshov region, there is a lack of hospices and palliative care does not cover the needs of terminally ill patients.     

Palliative Sedierung

Terminal illnesses can cause distressing symptoms such as severe pain, mental confusions, feelings of suffocation, and agitation. Despite skilled palliative care in some cases these symptoms may not respond to standard interventions. After all other means to provide comfort and relief to a dying patient have been tried and are unsuccessful, clinical caregivers and patients can consider palliative sedation.Sedation in the context of palliative medicine is the monitored use of medications to induce varying degrees of unconsciousness to bring about a state of decreased or absent awareness in order to relieve the burden of otherwise refractory suffering. Palliative sedation is not intended to cause death or shorten life. The patient and family should agree with plans for palliative sedation. Because cases involving palliative sedation are emotionally stressful, the patient, family, and health care workers can all benefit from talking about the complex medical, ethical, and emotional issues they raise.     

Palliative care knowledge,attitudes, and experiences amongst patients with bladder cancer and their caregivers

ObjectivesPalliative care is underutilized amongst patients with bladder cancer despite guideline recommendations and known benefits. In order to uncover potential access barriers, we sought to describe patient and caregiver knowledge, attitudes and experiences surrounding palliative care.MethodsWe surveyed 272 patients with bladder cancer and their caregivers through the Bladder Cancer Advocacy Network Patient Survey Network. In addition to collecting demographic, socioeconomic, and clinical characteristics, previously studied and validated questionnaires on palliative care knowledge and beliefs were administered. Patients and caregivers were also queried regarding their experiences with palliative care consultation.ResultsSurvey respondents demonstrated highly accurate knowledge of palliative care services. Attitudes and beliefs surrounding palliative care were overall positive. Caregivers demonstrated better knowledge and more positive beliefs of palliative care compared to patients. Despite an overall positive sentiment toward palliative care, only 9% of the cohort had palliative care consultation as part of their cancer treatment plan. Most patients with muscle-invasive or metastatic bladder cancer wished that palliative care had been discussed by their providers.ConclusionsA subset of bladder cancer patients possess accurate knowledge and positive beliefs of palliative care. Palliative care is infrequently discussed during the treatment of bladder cancer, with patients and their caregivers expressing desire for palliative care to be discussed more often. Provider education surrounding palliative care services is imperative to improving access for bladder cancer patients and caregivers.     

老年病房善别护理流程的建立与实践

目的探索老年科病房善别护理流程的建立和实践,构建老年住院患者临终关怀护理模式。方法建立老年科临终关怀组织架构,制定老年科住院患者善别护理流程,从老年患者入院到死亡后的丧亲安抚,以团队合作方式,提供连续的、一致的全程护理服务。结果实施3年来患者家属对病室环境、护理服务、巡视沟通、健康教育、临终关怀5个方面的满意率逐年上升,总满意率由94.67%上升至96.20%。结论开展善别护理能帮助老年患者改变对待死亡的态度,提高家属对死亡的接受度,提升护理服务满意率。     

Palliative care in end-stage renal disease: illness trajectories, communication, and hospice use

Palliative care is comprehensive, interdisciplinary care focusing on pain and symptom management, advance-care planning and communication, psychosocial and spiritual support, and, in end-stage renal disease (ESRD), the ethical issues in dialysis decision making. End-of-life care is one aspect of palliative care and incorporates all of the previously mentioned components as well as hospice and bereavement care. ESRD patients and their families are appropriate candidates for palliative care because of their high symptom burden, shortened survival, and significant comorbidity. The usual pattern of illness trajectory in ESRD is a progressive decline punctuated by episodes of acute deterioration prompted by sentinel events like limb amputation or myocardial infarction. Such events provide opportunities for advance-care planning and communication between providers and patients and families. Although communication is an integral component of palliative care, little is understood about effective provider-patient communication, especially in estimating and discussing prognosis. Palliative care has much to offer toward improving the quality of dialysis patients' lives as well as planning for and improving the quality of their deaths. The palliative care issues of illness trajectory, communication, and hospice use among ESRD patients will be reviewed.     

Palliativmedizin

Palliative medicine has progressed during recent years to an independent medical faculty within the German health system. Despite this development palliative care systems for out-of-hospital and in-hospital palliative care are still insufficient in Germany so that the development of necessary resources must be considered as not yet completed. To support the further national development palliative medicine can be temporarily or permanently coupled to existing departments, which can be advantageous for all concerned and last but not least be profitable to patients and their relatives. Possibilities for participation of anaesthesiologists in this area of medical care are discussed in the study reported here. Anaesthesiologists have always historically been represented in palliative medical departments, e.g. as pain specialists. In the following investigation the special possibilities of anaesthesia departments for supporting the education and development of in-hospital and out-of hospital palliative medical care departments are reported. Previous experience of co-operation between these two departments is well established. Departments of palliative medicine depend on a well working interdisciplinary co-operation between different medical disciplines (e.g. anaesthesiology, radiotherapy, surgery and oncology) and several medical professions (e.g. physicians, nurses, psychologists). The aim of palliative care therapy is to be responsible for the best possible therapy for cancer patients and to give support to their care-giving relatives. Due to the increasing establishment of palliative care procedures in Germany, departments of anaesthesiology should actively take part in the further development. Part of the responsibility of most anaesthesia departments is to practice pain management and critical care medicine, which are reasons why anaesthesiologists are predestined to be part of the system for palliative care patients and their relatives. Anaesthesia departments can be responsible for the organization of in-hospital and out-of-hospital palliative medicine and palliative care. The integration of anaesthesiological expertise into palliative medicine departments and vice versa can be a great opportunity for both medical departments and therefore represents a worthwhile engagement.     

The evolving and important role of anesthesiology in palliative care

A small but clinically significant proportion of dying patients experience severe physically or psychologically distressing symptoms that are refractory to the usual first-line therapies. Anesthesiologists, currently poorly represented in the rapidly evolving specialties of hospice and palliative medicine, are uniquely qualified to contribute to the comprehensive care of patients who are in this category. Anesthesiologists' interpersonal capabilities in the management of patients and families under duress, their knowledge and comfort level with the application of potent analgesic and consciousness-altering pharmacology, and their titrating and monitoring skills would add a valuable dimension to palliative care teams. This article summarizes the state of the art and means by which anesthesiologists might contribute to improvements in the important end-of-life outcome of safe and comfortable dying.     

Palliative care in the surgical ICU

Palliative care for the critically ill has become an increasingly important component of care in the SICU. As the population ages, medical technology continues to offer new treatments that can prolong life, and more and more Americans die in the hospital in critical care settings, the appropriate management of the end-of-life must be part of the clinical expertise of surgeons and intensivists. Part of this expertise must include the components of palliative care (eg, pain and symptom management, psychosocial support, communication skills, shared decision-making) and specialized areas of withdrawal and withholding of life support. Integrating palliative care expertise into the SICU is not straightforward; understanding when and how to make the transition from curative to palliative care can be fraught with uncertainty regarding prognosis and patient preferences.Attention to the principles of good pain management, communication with patient and family, and discussion of goals of care are not just for patients who are at the end-of-life, but are appropriate care for all critically ill patients, regardless of prognosis. In this framework, "intensive care"encompasses palliative and curative care.     

Medical futility and end-of-life care

Acceptance of the concept of medical futility facilitates a paradigm shift from curative to palliative medicine, accommodating a more humane approach and avoiding unnecessary suffering in the course of the dying process. This should not be looked upon as abandoning the patient but rather as providing the patient and family with an opportunity to come to terms with the dying process. It also does not entail withdrawal or passivity on the part of the health care professional. In addition to medical skills, the treating physician is responsible for guiding this process by demonstrating sensitivity and compassion, respecting the values of patients, their families and the medical staff. The need for training to equip medical staff to take responsibility as empathetic participants in end-of-life decision-making is underscored.     

Ambulante und stationäre palliativmedizinische Patientenversorgung in Deutschland

Background

In Germany, specialized out-patient palliative care systems (SPCS) are still structurally and organizationally under construction. Palliative care patients need an easy access to a qualified SPCS. The purpose of the present investigation was to show the nationwide distribution of all SPCS teams in comparison to the distribution of emergency medical systems. Possibilities for an effective structure of palliative medical care systems will be discussed in order to optimize patient care..

Methods

All SPCS teams in Germany (according to the Guide to hospices and palliative medicine of the German Association for Palliative Care 2008/2009) were documented. A cartographic representation of the structural distribution of palliative care systems was made taking a catchment area diameter of 50 km for each SPCS team and an accessibility diameter of 20 km for every palliative ward into account. These data were compared with the nationwide distribution of emergency institutions.

Results

In Germany 25 SPCS teams and 198 palliative wards could be identified. In contrast there are 1,109 emergency physician locations (1,051 ground based, 58 air based). The nationwide distribution of the existing SPCS teams does not at present give exhaustive coverage in comparison to emergency medical structures. No structure which might potentially result in an exhaustive implementation of SPCS teams and palliative stations is recognizable in the analysis or distribution.

Conclusions

The coverage of SPCS and in-hospital palliative care is still a theoretical construct in many regions of Germany. The number of existing SPCS teams and in-patient palliative institutions is insufficient to guarantee an exhaustive coverage of patient care as in emergency medical services. In order to achieve a higher quality of results the quality of the structure and processes must first be ensured. The distribution of palliative care should be centrally coordinated along the same lines as the emergency institutions in order to achieve a need-oriented exhaustive coverage. A surplus of care in some regions at the expense of an undersupply in other regions must be avoided. In the next step a further development and adaption of existing structures to the requirements would be a logical approach.