Thrombosis and anticoagulation in palliative care: an evolving clinical challenge

There is a clear recognition of the relationship between thrombosis and neoplastic diseases. In recent years, there have been a few reports dealing with some of the features of clinical progression and management of venous thromboembolism (VTE) in palliative care patients. In this report, we present four cases that describe some of the diverse aspects of this clinically challenging area to illustrate the symptom and quality of life issues for patients, and the management challenge for palliative care clinicians. Perhaps the most important issue in the palliative care setting is the need to balance the inconvenience of the various diagnostic and therapeutic options, particularly in settings where progression has resulted in a deteriorated physical and cognitive condition. We need to recognize that VTE does cause significant problems for some of our patients. We will always need to balance issues of life expectancy, comfort and quality of life, and risk and benefits of anticoagulation, and align these problems with the individual patient, and the family dynamics and desires we encounter.     

Racial, cultural, and ethnic factors influencing end-of-life care

Past efforts in the palliative and end-of-life care field have been laudably directed at increasing the cultural competence of providers and institutions and improving outreach to multicultural communities. Today, however, we face new challenges with regard to racial, cultural, and ethnic factors at the end of life. We now have documented evidence of disparities in almost every area of health care. In addition, breakthroughs in genomics research, including "race-based therapeutics," have redefined the meaning of our human differences. These trends, unfolding in an increasingly polarized post-9/11 world, greatly challenge our understanding of concepts of race, culture, and ethnicity. By definition, when considering these concepts, our focus shifts from the individual to that of group membership. In turn, this suggests using a population-based or epidemiological approach, which at once reveals inequalities and inequities in mortality patterns across diverse groups. Understanding and serving the needs of specific populations requires us to apply a framework of equity and to consider strategies to eliminate disparities. These include identifying sources of bias and discrimination in health care; enhancing the collection of racial, ethnic, and other demographic data; and increasing the representation of a range of diverse population groups in well designed qualitative and quantitative research. Using an epidemiological framework does not suggest, however, that we lose sight of dying individuals and their families. At the end of life, an individualized approach to care with a focus on quality is paramount for any patient, regardless of racial, ethnic, or cultural background.     

Ethical considerations in end-of-life care and research

The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to base clinical decisions. Therefore, there is an urgent need for research that can define the standard of care and can increase access to quality care. This paper discusses six ethical aspects of end-of-life research that investigators and clinicians should consider in designing and conducting palliative care research. These include: (1) whether a study is research or quality improvement; (2) the study's potential benefits to future patients; (3) the study's potential benefits to subjects; (4) the study's risks to subjects; (5) subjects' decision-making capacity; and (6) the voluntariness of subjects' choices to participate in research.     

Reciprocal suffering: the need to improve family caregivers' quality of life through palliative care

There is growing recognition of the reciprocity of suffering by patients and families experiencing terminal illness and the need to improve the quality of their lives as the patient's illness progresses. Research is presented that addresses the importance of a dyadic perspective in recognizing patients' and families' stress and adjustment and the related physical, emotional, social, spiritual and financial needs at the end-of-life. These aspects of quality of life are specifically addressed by palliative care. The philosophy and goals of palliative care are described, as is its role in promoting the best possible quality of life for patients and their families experiencing terminal illness. This article addresses the importance of assessing the dynamics of the family caregiving system and potential palliative care interventions to enhance the quality of life of family caregivers. Implications for research are also discussed.     

Opportunities for Palliative Care in Patients With Burn Injury—A Systematic Review

ContextPatients with significant burn injuries likely have palliative care needs.ObjectivesWe performed a systematic review of existing evidence concerning the palliative care needs of burn patients.MethodsThrough November 26, 2018, we systematically searched PubMed, CINAHL, Embase, Web of Science, and Scopus, using terms representing burn injuries and the eight domains of quality palliative care as outlined by the National Consensus Project for Quality Palliative Care. Eligible articles involved burn-injured patients treated with an intervention targeting at least one of the eight domains.ResultsOur searches yielded 7532 unique records, which led to 238 articles for full review and 88 studies that met inclusion criteria. Seventy-five studies addressed the domain physical aspects of care and merit a separate systematic review; 13 studies were included in our final review. Four of the seven domains—processes of care, psychologic symptoms, social aspects, and end of life—were addressed by studies but three domains—spiritual, cultural, or ethics—were unaddressed. Included studies highlight potential benefits from peridischarge self-care education programs, peer support, and group therapy in improving quality of life. In patients with severe injuries, end-of-life decision-making protocols were associated with increased utilization of comfort-focused treatments.ConclusionMost existing palliative care-related research in burn patients addresses interventions for physical symptoms with minimal literature concerning other domains. Opportunities exist for further research of palliative care in burn populations with emphasis on addressing interventions for all domains and better standardizing the language and outcomes for the palliative care interventions.     

Postdoctoral Research Training in Palliative Care: Lessons Learned From a T32 Program

Our aging population and advances in chronic disease management that prolong the time that patients live with a chronic illness have combined to create an enormous need for improved palliative care research across diverse diseases. In this article, we describe the structure and processes of a National Institutes of Health-funded T32 postdoctoral research fellowship at the University of Washington and our experiences in developing and implementing the program. We recognize a broad definition of palliative care research, including research focused on improving quality of life, minimizing symptoms, providing psychological and spiritual support, and improving communication about patients' values and goals of care, all in the context of a serious illness. We describe our four core principles for postdoctoral training in palliative care research, each with a number of specific approaches: 1) mastering a set of essential content and research skills; 2) structured mentoring and academic career development; 3) creating and supporting early success; and 4) interdisciplinary training and team science. In addition, we also describe our framework for the essential competencies necessary for a palliative care research training program, our methods for identification and selection of applicants, our outcomes to date, and our processes of continuous quality assessment and improvement. Our goal is to describe our successful postdoctoral research training program in palliative care to promote development of new programs and share information between programs to continue to build the field of collaborative and interdisciplinary palliative care research.     

Inappropriate referrals at the end of life—the existing Indian scenario

The Economist Intelligence Unit has ranked India’s end-of-life care last out of 40 countries. The lack of orientation towards palliative care, poor communication skills, a disease-focused, curative approach and the unending battle against death—all lead to unrealistic hope in patients and their families. Inappropriate referrals at the end of life are common and result in a lot of avoidable suffering for both the patients and their families. Propagation of clear guidelines to limit inappropriate therapeutic interventions and referrals in patients with limited prognosis is the need of the hour. Awareness, sensitization, education and training in palliative care are urgently required to change attitudes. This would go a long way in mitigating the misery for both the dying and their carers.     

Unequal cancer survivorship care: addressing cultural and sociodemographic disparities in the clinic

The number of individuals diagnosed with cancer is growing worldwide. Cancer patients from underserved populations have widely documented disparities through the continuum of cancer care. As the number of cancer survivors (i.e., individuals who have completed cancer treatment) from underserved populations also continue to grow, these individuals may continue to experience barriers to survivorship care, resulting in persistent long-term negative impacts on health and quality of life. In addition, there is limited participation of survivors from underserved populations in clinical trials and other research studies. To address disparities and change practices in survivorship care, a better understanding of the roles of both socioeconomic status (SES) and of culture in cancer care disparities and the relevance of these to providing high-quality care is needed. SES and culture often overlap but are not identical; understanding the impact of each is especially relevant to survivorship care. To enhance health equity among cancer survivors, clinicians need to practice culturally competent care, address cultural beliefs and practices that may influence survivors’ beliefs and activities, gain awareness of historical patterns of medical care in the survivor’s community, and consider how barriers to cross-cultural communications may hinder communication in clinical settings. While the design and implementation of survivorship care programs emphasizing effectiveness and equity is complex and potentially time consuming, it is critical for providing optimal care for all survivors, including those from the most vulnerable populations.     

Non-cancer palliative care: Experience and challenges faced in a palliative program from Singapore

Abstract

Palliative care espouses a holistic and multidisciplinary approach applicable to stages of disease in response to needs together with disease-modifying treatments, regardless of diagnosis. While cancer is the single most common killer disease, responsible for 28% of deaths in Singapore in 2007, non-cancer diseases accounted for more than twice that at 66%. Integrating palliative care for patients suffering from end-organ failure would balance curative measures with quality of life for our frailest patients, and support these patients during their final journey. This is only possible with close cooperation between palliative care teams and organ specialists. We report our experience and insights in managing non-cancer cases in an integrative model of care over the past 4 years. We find that most families and patients suffering from end stage non-cancer conditions are able to accept palliative care after honest communication and are able to talk about end-of-life plans. The majority of patients can achieve satisfactory symptom control, be cared for, and die in a place of their choice with the support of a palliative home care program without the need for frequent hospitalizations. Sustaining this model of care requires diligence, collaboration, and upgrading of skills based on coordinated resource allocation.     

Modern palliative care: an exercise in prevention and partnership

Palliative care is no longer solely an excercise in controlling suffering at the end of life. If we are to apply the principles of palliative care throughout the course of illness, both the culture and the organization of palliative care services must change. New partners must be enlisted in more sophisticated, increasingly academic partnerships. This change, while welcome and necessary, must come about with perservation of the core values of palliative care.     

Palliative care in developing countries: why research is needed

Contemporary medical knowledge is sufficient to control the suffering of most of the millions of terminally patients in the world if applied appropriately. However, palliative care is still unavailable to most patients in developing countries. Effective models of palliative care delivery that have been tested in developed countries seldom apply to the developing world where poverty, extended families, and insufficient health infrastructure require the adaptation of such care to local cultures and circumstances. Research from developing countries is therefore needed to develop, implement, and monitor the delivery of palliative care in ways that are feasible in resource-poor settings and acceptable to local populations. Palliative care research shares most of the obstacles common to health research in the developing world. Additional obstacles include a lack of consideration of palliative care as part of cancer control strategies and the low political acceptability of such care because it involves the use of opioid analgesics. Coordinated research efforts through active networking and common protocols would increase the visibility of the discipline, provide answers relevant to the local contexts, and assist in expanding palliative care services across the developing world.     

Palliative Care in Developing Countries

Contemporary medical knowledge is sufficient to control the suffering of most of the millions of terminally patients in the world if applied appropriately. However, palliative care is still unavailable to most patients in developing countries. Effective models of palliative care delivery that have been tested in developed countries seldom apply to the developing world where poverty, extended families, and insufficient health infrastructure require the adaptation of such care to local cultures and circumstances. Research from developing countries is therefore needed to develop, implement, and monitor the delivery of palliative care in ways that are feasible in resource-poor settings and acceptable to local populations. Palliative care research shares most of the obstacles common to health research in the developing world. Additional obstacles include a lack of consideration of palliative care as part of cancer control strategies and the low political acceptability of such care because it involves the use of opioid analgesics. Coordinated research efforts through active networking and common protocols would increase the visibility of the discipline, provide answers relevant to the local contexts, and assist in expanding palliative care services across the developing world.     

Palliative Care in Neurology

Palliative medicine is a specialty that focuses on improving the quality of life for patients with serious or advanced medical conditions, and it is appropriate at any stage of disease, including at the time of diagnosis. Neurologic conditions tend to have high symptom burdens, variable disease courses, and poor prognoses that affect not only patients but also their families and caregivers. Patients with a variety of neurologic conditions such as Parkinson disease, dementia, amyotrophic lateral sclerosis, brain tumors, stroke, and acute neurologic illnesses have substantial unmet needs that can be addressed through a combination of primary and specialty palliative care. The complex needs of these patients are ideally managed with a comprehensive approach to care that addresses the physical, psychological, social, and spiritual aspects of care in an effort to reduce suffering. Early discussions about prognosis, goals of care, and advance care planning are critical as they can provide guidance for treatment decisions and allow patients to retain a sense of autonomy despite progressive cognitive or functional decline. With the rapid growth in palliative care across the United States, there are opportunities to improve the palliative care knowledge of neurology trainees, the delivery of palliative care to patients with neurologic disease by both neurologists and nonneurologists, and the research agenda for neuropalliative care.     

When Two Worlds Meet

ABSTRACT

The author is one of four American premedical students traveled to India to spend a month with Pallium India (palliumindia.org) to learn about palliative care at Trivandrum Institute of Palliative Sciences, in the south Indian state of Kerala. The program was arranged by Child Family Health International (cfhi.org). They attended classroom sessions and joined the palliative care team during home visits and hospital consultations. They learned not just what palliative care is, but also how to understand and adapt to another culture. It was shocking to learn that all health care expenses are often out-of-pocket for most of the developing world and to see the extent of the suffering involved in life-limiting diseases. The students saw how the medical professional could adopt a basic and simple approach to medicine, acting as a mix of scientist, humanist, and spiritualist. She concludes that we in the United States too seem to be learning the value of such an approach and to make better use of available resources to improve the quality of life of those who are suffering.     

Maintaining quality of life at the end of life. (Mayo Clinic, Rochester, MN) May Clin Proc 2000;75:1305–1310.

Despite the successful growth of the hospice movement during the past 30 years in the United States, almost 85% of Americans continue to die in hospitals or nursing homes. While the benefits of palliative care principles are well established, palliative care interventions remain underused in clinical practice in the settings in which most Americans die. Our premise is that physicians as a group perpetuate end-of-life suffering rather than ease the transition from life to death. We also believe that maintaining quality of life (QOL) at the end of life requires a multidimensional approach orchestrated by physicians drawing on the full range of available physical, psychological, social, and spiritual interventions. This article defines the meaning of QOL at the end of life and then examines the ramifications of failing to attend to QOL concerns in dying patients. It reviews strategies that physicians can use to advance palliative care approaches, thereby reducing terminally ill patients' suffering in the institutions in which most die.     

Workforce Planning for Community-Based Palliative Care Specialist Teams Using Operations Research

ContextMany countries have aging populations. Thus, the need for palliative care will increase. However, the methods to estimate optimal staffing for specialist palliative care teams are rudimentary as yet.ObjectivesTo develop a population-need workforce planning model for community-based palliative care specialist teams and to apply the model to forecast the staff needed to care for all patients with terminal illness, organ failure, and frailty during the next 20 years, with and without the expansion of primary palliative care.MethodsWe used operations research (linear programming) to model the problem. We used the framework of the Canadian Society of Palliative Care Physicians and the Nova Scotia palliative care strategy to apply the model.ResultsTo meet the palliative care needs for persons dying across Nova Scotia in 2019, the model generated an estimate of 70.8 nurses, 23.6 physicians, and 11.9 social workers, a total of 106.3 staff. Thereby, the model indicated that a 64% increase in specialist palliative care staff was needed immediately, and a further 13.1% increase would be needed during the next 20 years. Trained primary palliative care providers currently meet 3.7% of need, and with their expansion are expected to meet 20.3% by 2038.ConclusionHistorical, current, and projected data can be used with operations research to forecast staffing levels for specialist palliative care teams under various scenarios. The forecast can be updated as new data emerge, applied to other populations, and used to test alternative delivery models.     

Reflections on lymphoedema, fungating wounds and the power of touch in the last weeks of life

Terminal care is a significant chapter of life in which each individual has the right to expect dignity, compassion, holistic care, and quality of life. The case of 'Sally', a 57-year-old woman with a diagnosis of inflammatory breast cancer, left arm lymphoedema, and a fungating chest wound, gave palliative care nurses a multitude of distressing and complex challenges to manage. Management of lymphoedema is often put into the 'too hard basket', especially in the palliative care setting. Similarly, fungating wounds are hard to confront, and the power of touch is often underestimated. The aim of this case study is to explore and reflect on how these issues entwine, and how vital it is for nurses to feel comfortable in providing the most appropriate care. As a result of reflection on Sally's care management many issues were highlighted, including the crucial need to relieve her symptoms with timely, appropriate, dignified, and respectful care, optimizing her sense of worth and quality of life.     

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.     

A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia

Aim. This paper considers the challenges of delivering effective palliative care to older people with dementia and the possible strategies to overcome barriers to end-of-life care in these patients. Background. In UK alone, approximately 100 000 people with dementia die each year and as the number of older people increases, dementia is set to become even more prevalent. Dementia is a progressive terminal illness for which there is currently no cure. Patients dying with dementia have significant health-care needs and in recent years it has been recognised that palliative care should be made available to everyone regardless of diagnosis, as this improves comfort and quality of life. Despite this, patients dying with dementia are often still not given access to palliative care services. Method. A review of English language literature published after 1996 to the present day relating to older people with dementia during the terminal phase of their illness. Results. Twenty-nine articles met inclusion criteria for the review. Most originated from North America and UK and were mostly quantitative in nature. Four key themes were identified: difficulties associated with diagnosing the terminal phase of the illness (prognostication); issues relating to communication; medical interventions; and the appropriateness of palliative care intervention. Conclusions. This review reinforces the importance of providing appropriate palliative care to individuals suffering from end-stage dementia and identifies some of the barriers to extending such specialist palliative care provision. Relevance to practice. There is an urgent need to improve palliative care provision for older people with end-stage dementia and, in addition, more research is required on the needs of patients entering the terminal phase of dementia to assist the allocation of appropriate resources and training to ensure quality and equality in the provision of end-of-life care.