Palliative care for people with end-stage non-malignant lung disease

Progressive non-malignant lung disease (PNMLD) is a common cause of morbidity and mortality in the UK. In 1999, chronic lung disease--including chronic obstructive pulmonary disease (COPD), tuberculosis, pulmonary circulatory disease, pneumonoconiosis, sarcoidosis and cystic fibrosis--killed almost 39,000 (British Thoracic Society, 2000), while it is estimated that 600,000 people in the UK have COPD, the most common non-malignant lung disease (BTS, 2001).     

Palliative care for people with non-malignant conditions in a New Zealand community

Abstract

Introduction: Little is known about the experiences of people with non-malignant, life-threatening conditions in the community who are not receiving hospice palliative care. The aim of this study was to understand the experiences and needs of people dying in the community with respiratory, renal, cardiac, neurological diseases, and cancer and those of the people caring for them, both formal health professionals and informal carers.

Subjects and Methods: This is qualitative research where 13 people with life-limiting illness, eight spousal caregivers, three adult children, three specialists, one general practitioner and one psychotherapist were interviewed – a total of 29 participants. Analysis was thematic and interpretive within a phenomenological framework.

Conclusions: Non-malignant disease makes similar demands on patients, families and health professionals, yet malignant disease is more likely to have the terminal phase identified so that people can access palliative care services. There were a number of spousal caregivers, who also had life-limiting conditions thus increasing the level of burden experienced by not only themselves, but their families. This research identified the needs of individuals and their families with non-malignant conditions compared with those with malignant conditions and confirmed the findings of previous literature. Understanding the burden families' experience and how they rely on health professionals will assist in developing collaborative ways of working to break down barriers and provide palliative care for these individuals and their families.     

Palliative care in Parkinson's disease

Parkinson's disease is a progressive, neurodegenerative condition with no known cure. People with the condition can have complex palliative care needs similar to those of cancer patients. This article describes the four stages of Parkinson's disease, and illustrates how nurses can apply the principles of palliative care to support and care at each stage.     

Patterns of dying: palliative care for non-malignant disease

As awareness grows of the palliative care needs of those diagnosed with advanced life-threatening illness other than cancer, consideration needs to be given to how to address these needs. This paper focuses on palliative care for those with such diagnoses by describing variations in illness trajectory according to diagnosis, and exploring how this may affect provision of palliative care.     

Palliative care provision in Huntington's disease

There is currently much interest regarding the needs of people affected by non-malignant disease and whether or not these are being met by palliative care services. The evidence available appears to support the conclusion that while there is a general inequality of access, some individuals with non-malignant conditions such as cardiac disease and motor neurone disease are able to access palliative care services more readily than others. Huntington's disease (HD) is a devastating neurological condition of long duration and as such may have a lengthy palliative phase. Consequently, a diagnosis of HD will have a major impact on the quality of life of the affected individual and their family. For carers, an understanding of this challenging disease and its prognosis is essential for the provision of appropriate and effective care. This article reviews the links between HD and palliative care and discusses some of the challenges facing patients, families and health care professionals in adopting a palliative approach in the management of the disease.     

Palliative care in chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease (COPD) is the only major worldwide cause of mortality that is currently increasing in prevalence. Furthermore, COPD is incurable, and the only therapy that has been shown to increase survival is oxygen therapy in selected patients. Compared to patients with cancer, patients with COPD experience similar levels of pain, breathlessness, fatigue, depression, and anxiety and have a worse quality of life but have comparatively little access to palliative care. When these patients do receive palliative care, they tend to be referred later than patients with cancer. Many disease, patient-, and provider-related factors contribute to this phenomenon, including COPD's unpredictable course, misperceptions of palliative care among patients and physicians, and lack of advance care planning discussions outside of crisis situations. A new paradigm for palliative care would introduce palliative treatments alongside, rather than at the exclusion of disease-modifying interventions. This integrated approach would circumvent the issue of difficult prognostication in COPD, as any patient would receive individualized palliative interventions from the time of diagnosis. These points will be covered in this review, which discusses the challenges in providing palliative care to COPD patients, the strategies to mitigate the challenges, management of common symptoms, and the evidence for integrated palliative care models as well as some suggestions for future development.     

Palliative care in long-term care: a system in change

The provision of palliative care for older people within the next decade will need to be substantially different to that provided today. In long-term care settings the achievement of quality palliative care will require attention to all levels of the health and social care system, in both its formal and informal manifestations. We suggest that long-term care facilities will become the hospices of the future, caring for older people with chronic conditions with a long trajectory to death, the most common being dementia. We see this progression as inevitable and appropriate if the right support is provided. We discuss the impact that transferability and sustainability has had on the present provision of palliative care for older people and how that may affect the future. Four forces which are important factors in public policy; leadership, a culture that supports learning throughout the care process, an emphasis on effective team development and the use of information technologies for quality activities are used as a framework for our vision of social planning. We then go on to discuss the impact of costs, workforce, service planning and public awareness as vital areas where progress needs to be carefully tackled. We suggest some likely poor outcomes if this planning does not occur, but indicate that if planning and implementation is effective then services can provide the kind of care the baby boomer generation seeks.     

Palliative care in advanced kidney disease: a nurse-led joint renal and specialist palliative care clinic

The National Service Framework for Renal Services Part 2 identifies quality requirements for end-of-life care for individuals with kidney failure, recognizing the potential to forge closer relationships between renal and specialist palliative care providers. This article describes a pilot project set up by two Clinical Nurse Specialists, one working in hospice specialist palliative care and the other in renal palliative care within an acute trust. The purpose of the pilot was to work in collaboration to run a streamlined nurse-led clinic that would meet the palliative care needs of chronic kidney disease (CKD) Stage 5 patients and their carers. To achieve this the clinic would have to provide optimal symptom management, empower patients to make their own choices, and support them with advance care planning underpinned by the End of Life Care Strategy. The partnership also aimed to promote service improvement and practice development using transference of knowledge, skills, and expertise. Initial informal feedback, including a very small patient survey, suggests that the clinic was well received by patients, carers, and other health professionals. The clinic is ongoing and deserves more formal evaluation to encourage future service development.     

Palliative care: a challenge for orthopaedic nursing care

Patients who face chronic, incurable, or life-ending musculoskeletal conditions often receive inadequate care either due to a lack of caregiver awareness or inattention to maintaining the highest quality at the end of life. Palliative care focuses on the comprehensive physical, psychological, social, spiritual, and existential needs of patients with life-threatening or debilitating illness. Orthopaedic nurses and all nurses in general are challenged to incorporate palliative care principles into care planned with patients and families facing end-of-life issues. This article addresses the leadership role the National Association of Orthopaedic Nurses (NAON) has taken to develop a consensus document which endorses the Last Acts Precepts of Palliative Care and affirms the need for palliative care with patients who experience life-threatening illness. A case study is used to illustrate the opportunity a multidisciplinary team has to center care on the individual, while remaining sensitive to the holistic needs of the patient for self-determination at the end of life.     

Palliative care: a Yorkshire approach.

Palliative care services have traditionally tended to concentrate on the needs of patients with cancer. The philosophy of Yorkshire Health is to extend those services to all people with life-threatening diseases. The progress in service provision which has taken place in the region is described, but work still needs to be done in training professionals to provide the appropriate level of skilled care to patients in hospitals, hospices and community.     

Palliative care in Parkinson's disease: implications for neuroscience nursing.

Parkinson's disease (PD) is a chronic, progressive neurological disease affecting 1.5 million Americans. The modern success of pharmacology and deep-brain stimulation surgery to treat the motor symptoms of tremor, rigidity, and bradykinesia provide PD patients with longer lives and increased motor functioning. However, in the moderate and advanced stages of disease, the therapeutic benefits of pharmacology diminish and motor symptoms are more complicated to treat. The nonmotor symptoms of PD receive little attention in clinical settings, although they can lead to disability and caregiver burden. The Center to Advance Palliative Care advocates applying the principles of palliative care to chronic disease. Likewise, the World Health Organization has redefined palliative care to include life-threatening illness. The Parkinson's Disease Model of Care (PDMC) takes the precepts of palliative care and presents a model for the neuroscience nurse to use in individual care planning across the trajectory of disease. The PDMC guides the nurse in providing relief from suffering for PD patients and their families, from diagnosis through bereavement, with an emphasis on advance care planning.     

Palliative care: a challenge for nurses

There is an ever-growing number of cancer patients in the world today. Of the estimated nine million new cancer cases diagnosed in 1997 worldwide, 52% occurred in developing countries (WHO, 1998). The mortality from cancer is expected to rise around the globe. About 7 million deaths per year occur in the world due to cancer, of which, approximately 0.8 million occur in India (WHO, 1994). There is no cure to date for this disease but definitely a lot can be done to make the lives of these people meaningful and productive. With this idea the concept of hospice and palliative care was initiated.