Reviewer Acknowledgement 2014

The aim of this paper is to encourage critical discussion of an individual's understanding of palliative care and compare this with a health care professional's understanding of palliative care. In doing this, the paper serves to illustrate the importance of words attached to services – so with palliative care – are we providing good care, or scaring the patients? The paper touches on the historical origins of palliative care as an adjunct of oncology, to a specialism in its own right and now as an integral part of all care – in a ‘generalist palliative care nurse’. However, it is unlikely that patients and their families are aware of such developments and will see palliative care services as immediate end of life care. It is argued that whatever your thoughts on the use of the term ‘palliative care’, it is important to understand what has resonance for patients. You may not agree with this paper, and I do not expect all of you to agree, but I hope it has made you think. For those who strongly disagree, take heart from a quote by Frank A. Clark (1860–1936)‘We find comfort among those who agree with us – growth among those who don’t’.     

The prevention of euthanasia through palliative care: new developments in The Netherlands

Dutch palliative care stands on the eve of important changes. Further development of palliative care has become part of official national health care policy. One of the aims is prevention of euthanasia. Through an expansion and improvement of palliative care facilities it is trying to rule out the possibility that future requests of euthanasia might be brought about through insufficient and inadequate palliative care. This paper focuses on these new developments in The Netherlands. It first discusses the recent developments with regard to euthanasia. Thereafter, it describes the dynamic setting of palliative care. Finally, the issue of prevention of euthanasia through palliative care is analyzed. With regard to this topic, two questions need to be carefully distinguished. On the one hand, there is the factual question of whether a further development of palliative care can prevent euthanasia, on the other hand we have the normative question of whether palliative care should be further developed to prevent euthanasia. Both questions are analyzed.     

Minding the gap: access to palliative care and the homeless

Background

With an ever increasing number of individuals living with chronic and terminal illnesses, palliative care as an emerging field is poised for unprecedented expansion. Today’s rising recognition of its key role in patients’ illnesses has led to increased interest in access to palliative care. It is known that homelessness as a social determinant of health has been associated with decreased access to health resources in spite of poorer health outcomes and some would argue, higher need. This article aims to discuss the current state of affairs with regards to accessing palliative care for the homeless in Canada.

Discussion

Recent review of the literature reveals differential access to palliative care services and outcomes with differing socio-economic status (SES). Notably, individuals of lower SES and in particular, those who are homeless have poorer health outcomes in addition to poor access to quality palliative care. Current palliative care services are ill equipped to care for this vulnerable population and most programs are built upon an infrastructure that is prohibitive for the homeless to access its services. A preliminary review of existing Canadian programs in place to address this gap in access identified a paucity of sporadic palliative care programs across the country with a focus on homeless and vulnerably-housed individuals. It is apparent that there is no unified national strategy to address this gap in access.

Summary

The changing landscape of the Canadian population calls for an expansion of palliative care as a field and as many have put it, as a right. The right to access quality palliative and end of life care should not be confined to particular population groups. This article calls for the development of a unified national strategy to address this glaring gap in our healthcare provision and advocates for attention to and adoption of policy and processes that would support the homeless populations’ right to quality palliative care.

     

Palliative cancer care ethics: principles and challenges in the Indian setting

Palliative cancer treatment is a system of care that seeks to relieve suffering in patients with progressive cancer. Given the intractable symptoms with which certain malignancies manifest, palliative care offers a practical approach towards improving the patient's quality of life. However, there are an array of ethical issues associated with this treatment strategy such as particular methods of pain relief, a reliable assessment of suffering, autonomy, and multi-specialist care. While these principles are important to increase and improve the network of palliative care, the resource-poor Indian environments present numerous barriers for these principles to be practically applied. As the infrastructure of comprehensive cancer centers develop, paralleled with an increase in training of palliative care professionals, significant improvements need to be made in order to elevate the status of palliative cancer care in India.     

Changes in professionals’ beliefs following a palliative care implementation programme at a surgical department: a qualitative evaluation

Background

One ambition regarding palliative care is that it should be more accessible to patients and families regardless of care setting. Previous studies show many difficulties and shortcomings in the care of patients with palliative care needs in acute care facilities, but also challenges regarding efforts to implement palliative care. The aim of this study is to evaluate how the implementation of palliative care, using a combination of integration and consultation strategies, can change beliefs regarding palliative care among professionals in a surgical department.

Method

In order to explore professionals’ experiential outcome of an educational implementation strategy, a before-after qualitative design was used. The study was based on three focus group discussions. Two discussions were conducted before introducing the implementation strategy and one was conducted after. The participants consisted of five nurses and two specialist surgeons from a surgical department in Sweden. The focus group discussions revealed a variety of different attitudes and beliefs, which were analysed using qualitative systematic text condensation.

Results

Beliefs regarding palliative care were identified in seven areas; the importance of palliative care, working methods in palliative care, team collaboration in palliative care, collegial support, discussions about diagnosis, symptoms at the end of life, and families of patients in palliative care. Changes in beliefs were seen in all areas except one: team collaboration in palliative care.

Conclusion

It is possible to change the beliefs of health care professionals in a surgical department regarding palliative care through the implementation of palliative knowledge. Beliefs were changed from an individual to a collective development where the group initiated a shared palliative working method. The changes observed were palliative care being described as more complex and participants differentiating between surgical care and palliative care.

     

Clinical aspects of palliative care in advanced Parkinson’s disease

Parkinson's disease (PD) is one of the most common neurodegenerative disorders of the elderly population. Few therapeutic options are available for patients with PD requiring palliative care. Treatment of the early stages of PD is entirely different from later stages. During the later stages, the palliative care model is introduced to provide the patient with comfort and support. Early palliative care in PD requires minimization of dyskinesias and decreasing occurrence of motor and non-motor off times in an effort to maximize independent motor function. In the later stages, the focus of treatment shifts to treating the predominant non-motor symptoms and having a more supportive and palliative nature. The purpose of this review is to provide a summary of the palliative care management issues and palliative care management options of end-stage PD patients.     

Development of a palliative education assessment tool for medical student education.

Studies assessing palliative care education in U.S. medical schools reveal that little attention is paid to this topic. Although core competencies have been defined, few schools have implemented effective means to incorporate formal palliative care education into undergraduate curricula. To promote reform, each school needs to conduct a thorough assessment to identify palliative care content throughout the four-year curriculum. The authors developed an innovative assessment instrument to facilitate curricular mapping of palliative care education. The Palliative Education Assessment Tool (PEAT) comprises seven palliative care domains: palliative medicine, pain, neuropsychologic symptoms, other symptoms, ethics and the law, patient/family/nonclinical caregiver perspectives on end-of-life care, and clinical communication skills. Each domain details specific curricular objectives of knowledge, skills, and attitudes. Designed as a flexible self-assessment tool, PEAT helps determine the existence of palliative care education, which usually is found in various formats throughout a medical school's curriculum and thus sometimes "hidden." PEAT enables educators to describe a specific, multidimensional aspect of the curriculum and use the information for strategic planning, educational reform, and evaluation. The curricular reform implications of such an instrument are broader than palliative care assessment. A modified version of PEAT can be used to assess systematically other topics that are taught in various formats in the curriculum and to develop collaborative approaches to fulfilling the educational objectives of those topics.     

Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands

Background

Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high quality palliative care, clinical practice guidelines are needed. The aim of this study is to improve palliative care for children by making high quality care recommendations to recognize and relieve symptoms in paediatric palliative care.

Methods

An extensive search was performed for guidelines and systematic reviews on paediatric palliative care up to year 2011. An expert panel combined the evidence with consensus to form recommendations on the treatment of symptoms in paediatric palliative care.

Results

We appraised 21 guidelines and identified 693 potentially eligible articles of which four met our inclusion criteria. None gave recommendations on the treatment of symptoms in paediatric palliative care. Two textbooks and an adult palliative care website were eventually our main sources of evidence.

Conclusion

Hardly any evidence is available for the treatment of symptoms in paediatric palliative care. By combining evidence for adult palliative care and the sparse evidence for paediatric palliative care with expert opinion we defined a unique set of high quality care recommendations to relieve symptoms and lessen the suffering of children in palliative care. These results are an important tool to educate caregivers on how to relieve symptoms in children in paediatric palliative care.

     

Palliative care as a response to dysthanasia

Palliative care is frequently discussed as an alternative or a counter-balance to euthanasia. In this paper, palliative care is considered as a response to dysthanasia or therapeutic persistence. First, the main features of dysthanasia are mentioned: the accent is put on different questions: until when to implement therapeutic persistence? When does the treatment become useless? What is a permanent vegetative condition? Then, palliative care, the scope of which is to achieve the best life quality for the patient and his family is discussed. The hospice and its care are emphasized, analyzing the international guidelines on the topics at the end of life. International palliative care recommendations are analyzed; special attention is paid on the codex of medical ethics and deontology and its regulations concerning palliative care. Conclusion summarizes some thoughts about dysthanasia and palliative care.     

Ireland,the UK and Europe: a review of undergraduate medical education in palliative care

Palliative Care is an important and emerging medical speciality, formally recognised by the Irish Medical Council in June 1995. Three years previously, in 1992, the Association of Palliative Medicine for Great Britain and Ireland published an official curriculum for undergraduate medical education in palliative care. The European Association of Palliative Care held a workshop the following year and reported that, with the exception of the UK, education for medical students is incomplete. This review examines the evidence that European undergraduate medical education in palliative care is underdeveloped. Key elements of effective undergraduate teaching programmes in this discipline are identified. Finally, it is noted that little has been written about undergraduate palliative care education in Irish medical schools; the situation in this country is thus unknown. A study to determine current education in palliative care in Irish medical schools is required.     

The PAMINO-project: evaluating a primary care-based educational program to improve the quality of life of palliative patients

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.     

Palliative care and dementia—A time and place?

The current focus in dementia care places emphasis on the potential of people to live well with the condition. Given the historical tendency to neglect the full rights and citizenship of people with dementia, such an emphasis gives hope and optimism that there is life after diagnosis. This paper seeks to explore the potential compromise of effective preparation for the complexities of advanced illness that may be presented by this consistently up-beat message. Dementia is a life limiting condition, currently without cure. Therefore, the appropriateness of palliative care may seem obvious. Yet, until relatively recently, palliative care was seen as an adjunct to oncology in the minds of professionals and public alike. However, there is a growing recognition that specialist palliative care has much to offer people with a range of long term conditions, including people with dementia. So, whilst ‘living well’ is an important message—especially following diagnosis—planning for advanced dementia and dying well is equally important. The aim of this paper is to highlight policy on the living well and the palliative care approach for people with dementia. A word limited narrative literature review was conducted to explore how policies have or have not informed the literature on both messages. The findings emphasise the need for a continuum approach to dementia care, with discussion on when, where, and how can palliative care be delivered for people with dementia.     

Access to palliative care for homeless people: complex lives,complex care

Background

People experiencing homelessness often encounter progressive incurable somatic diseases in combination with psychiatric and psychosocial problems, and many need palliative care at the end of their lives. Little is known about how palliative care for this group can be started in good time and provided optimally. The objective of this paper is to give insight into the extent people experiencing homelessness have access to good palliative care.

Methods

Qualitative in-depth interviews were held to reconstruct the cases of 19 people experiencing homelessness in the Netherlands. Eight cases concerned persons being in the palliative phase (using the surprise question) and the other 11 cases concerned persons recently died after a period of ill health due to somatic illness. We used purposive sampling until data saturation was reached. The total number of interviews was 52. All interviews were transcribed verbatim and analysed inductively.

Results

Three key themes were: ‘late access’, ‘capricious trajectory’ and ‘complex care’. The first key theme refers to the often delayed start of palliative care, because of the difficulties in recognizing the need for palliative care, the ambivalence of people experiencing homelessness about accepting palliative care, and the lack of facilities with specific expertise in palliative care for them. The second key theme refers to the illness trajectory, which is often capricious because of the challenging behaviour of people experiencing homelessness, an unpredictable disease process and a system not being able to accommodate or meet their needs. The third key theme refers to the complexity of their care with regard to pain and symptom control, psychosocial and spiritual aspects, and the social network.

Conclusions

The care for in the palliative phase does not satisfy the core requirements of palliative care since there are bottlenecks regarding timely identification, the social network, and the assessment and management of physical symptoms and psychosocial and spiritual care needs. Education in palliative care of outreach professionals, training staff in shelters in the provision of palliative care, and building a network of palliative care specialists for people experiencing homelessness.

     

Palliative care in chronic psycho-geriatrics: a case-study

In this case-study the relevance of psycho-social interventions for providing palliative care in the terminal phase of life of psycho-geriatric patients with functional-psychiatric co-pathology is described. The know-how, interventions and facilities such as available in a reactivation unit in a 'psychiatric-skilled' Dutch nursing home, were highly relevant to tune palliative care to the needs and abilities of the patient. The application of the four main-dimensions of the method of Dynamic System Analysis (particularly Cognitive functions, Psychological functions, Social context and Biology) can stimulate professionals to use an integral perspective both to the psycho-social needs of terminal psycho-geriatric patients and their relatives and to the biological aspects. To establish the value of the DSA method for providing palliative care to psycho-geriatric patients with functional-psychiatric co-pathology scientific research is recommended to determine the prognostic profile of patients who benefit most from an actual palliative care program.     

General practitioners' use and experiences of palliative care services: a survey in south east England

Background  

The role of the General Practitioner (GP) is central to community palliative care. Good liaison between the different professionals involved in a patient's care is extremely important in palliative care patients. In cases where GPs have previously been dissatisfied with palliative services, this may be seen as a barrier to referral when caring for other patients. The aim of this survey is to investigate the use and previous experiences of GPs of two palliative care services, with particular emphasis on barriers to referral and to explore issues surrounding the GP's role in caring for palliative patients.     

Issues in Dutch palliative care: readjusting a distorted image

This issue presents a review of several issues in Dutch palliative care, paying attention to readjusting a distorted image due to the euthanasia practice in the Netherlands. A few articles stress the evolution of palliative care (especially in the UK and the Netherlands), developed palliative care services in the Netherlands, and new developments in the Netherlands concerning the prevention of euthanasia through palliative care. Also the needs concerning palliative care for children as well as for chronic psycho-geriatrics patients are presented. Further attention is paid to the organisation of palliative care, focusing at evaluative research on palliative support teams, caring for caregivers (experiences and evaluation of interventions for palliative care teams), and effects of transmural care on coordination and continuity of care. Finally, some articles focus on ethical considerations in the treatment of pain in hospice movement, ethical evaluation of clinical trials in palliative care, and the role of informed consent in palliative radiotherapy, stressing the participation of patients and proxies in treatment decisions. Conclusions are presented on the consequences for educational and counselling aspects of palliative care.