End-stage Care Research Articles

End-stage care for children after heart transplant.

Heart transplant is performed annually in over 600 children worldwide to treat life-limiting cardiac disease. Conversations regarding waitlist mortality, post-transplant morbidity and mortality, and goals of care are commonplace pre-transplant. However, there is a void of information and resources for providers and families when end-stage disease recurs in the long-term transplant recipient. The purpose of this review is to discuss the care of the pediatric heart transplant recipient with chronic cardiac dysfunction occurring years after a successful transplant. This includes a need for transplant providers to have education and training related both to palliative care and medical ethics to improve shared decision making with patients and families.

Cost-Effectiveness of Brentuximab Vedotin Versus Physician's Choice of Methotrexate or Bexarotene for the Treatment of Cutaneous T-cell Lymphoma in Canada.

Brentuximab vedotin versus physician's choice of methotrexate (MTX) or bexarotene (BEX) significantly improved progression-free survival (PFS) (median PFS, 16.7 vs. 3.5months) and delayed time to subsequent treatment (8.4 vs. 3.7months), with similar overall survival in patients with CD30-expressing mycosis fungoides (MF) or primary cutaneous anaplastic large cell lymphoma (pcALCL), two types of cutaneous T-cell lymphomas. We assessed the cost-effectiveness of brentuximab vedotin versus MTX or BEX from a Canadian healthcare payer perspective in the indicated population. A 5-state partitioned survival model [pre-progression, non-stem cell transplant (SCT) post-progression, SCT, SCT relapse, death] with a weekly cycle length and 45-year lifetime horizon has been developed. Health-state occupancies, utility estimates, and treatment duration were informed by ALCANZA. Other inputs and costs came from the literature or clinician experts. Scenario analyses varied key parameters and tested assumptions. Brentuximab vedotin versus MTX or BEX was cost-effective; the incremental cost-effectiveness ratio was CAN$43,790 per quality-adjusted life year (QALY) gained. Brentuximab vedotin was more effective (incremental life years: 0.15; QALYs: 0.25) and total treatment costs were slightly higher (incremental costs: $11,105) than MTX or BEX. Key model drivers included end-stage care duration, SCT eligibility, and brentuximab vedotin retreatment rates. Brentuximab vedotin compared with MTX or BEX was cost-effective for CD30-expressing MF and pcALCL. Brentuximab vedotin's higher drug costs versus MTX or BEX were offset by decreased post-progression and end-stage management costs, and showed a 0.25 QALY gain versus MTX or BEX, and increased the proportion of patients eligible for potentially curative SCT.

Time is tissue. Want to save millions in wound care? Start early: a QI project to expedite referral of high-risk wound care patients to specialised care

IntroductionWound care is a multibillion-dollar industry, and most research and treatment are geared towards late-stage or end-stage care. The longer a patient has a wound, the more likely it is...

“I want to go home”: How location at death influences caregiver well-being in bereavement

Goal concordant or congruent care involves having expressed wishes upheld. Yet, the preferred location for end-of-life care may be unaddressed. Caregiver-patient congruence between preferred and actual locations of care may influence the quality of life in bereavement. The study aimed to explore how the congruence between caregiver-patient preferred and actual locations of death influenced well-being in bereavement. Mixed methods were employed. In-depth in-person interviews were conducted with 108 bereaved caregivers of a hospice patient about 4 months after the death. An interview guide was used to collect quantitative and qualitative data: demographics, decision-making, Core Bereavement Items (CBI), Health Related Quality of Life, and perspectives on the end-of-life experiences. Data were analyzed with a convergent mixed methods one-phase process. Patient preference-actual location congruence occurred for 53%; caregiver preference-actual location congruence occurred for 74%; caregiver-patient preference and location of death occurred for 48%. Participants who reported some type of incongruence demonstrated higher levels of distress, including more days of being physically and emotionally unwell and more intense bereavement symptoms. The Acute Separation subscale and CBI total scores demonstrated significant differences for participants who experienced incongruence compared with those who did not. Preference location congruence themes emerged: (1) caregiver-patient location congruence, (2) caregiver-patient location incongruence, and (3) location informed bereavement. Congruence between a dying person's preferred and actual locations at death has been considered good care. There has been little focus on the reciprocity between caregiver-patient wishes. Discussing preferences about the place of end-stage care may not make location congruence possible, but it can foster shared understanding and support for caregivers' sense of coherence and well-being in bereavement.

Research progress on nursing staff′s coping with death competence

Nursing staff plays a crucial role in the end-stage of a patient′s life, and it is inevitable for nursing staff to face and handle problems about death. The ability to cope with death is of vital importance, which can reduce the risk of emotional distress in nurses, and assist nurses to better participate in patients' end-stage care, and improve the quality of care. This paper summarizes the definition, components, theoretical frameworks and models, assessment tools, status quo, influencing factors of the coping with death competence, and propose the corresponding intervention strategy according to the situation of our country, provide references for the future research. Key words: Nurse; Coping with death competence; Review

Difficulties Experienced in Trauma Nursing Practice by Expert Emergency Nurses in Japan

The objective of this study was to determine the difficulties experienced in trauma nursing practice by expert emergency nurses in Japan. Ten nurses who worked at emergency and critical care centers in Japan were directly involved in nursing patients were selected by purposive sampling and underwent semi-structured interviews regarding the difficulties they experienced in trauma nursing. The nurses were specialists in critical care nursing or were certified emergency nurses. The interview responses were analyzed by the qualitative descriptive method. The following six categories of difficulties associated with the direct care of trauma patients and their family members encountered in trauma nursing practice were identified: [Initial handling of highly urgent trauma patients], [Understanding and observing the condition of patients who are in the treatment stage], [Judging when to transition to end-stage care for patients difficult to save], [Mitigating suffering and expanding safe activities of daily living for trauma patients], [Transitional care with a long-term perspective for trauma patients], and [Relationships with the family members of patients who died]. Three categories of difficulties related to the role of the expert nurse in trauma nursing practice were identified: [Person-to-person coordination and cooperation for a trauma patient], [Playing an educational role for the nursing staff], and [Pursuing expertise in trauma nursing and gaining empirical knowledge]. The findings suggested a need to establish systems for training and consultative support and opportunities to create meaning by reflecting on fulfillment and nursing practice.

The rehabilitation services current situation and reference of developed countries in elderly patients with tumor

The tumor is a kind of age-related chronic diseases. Nearly 60% tumors appear in 65 years or older. With the growth of elderly population and worsen of environment. There is an upward trend in elderly patients with tumor. Most of patients with tumor, their subsequent treatment, rehabilitation or end-stage care outside the hospital. Rely on the community′s long-term rehabilitation services at home. However, due to various factors, limit the elderly patients with physical and mental needs. Unmet effective needs. This paper is based on extensive researching and reading lots of literature, to summarize and analyze the rehabilitation services between the elderly patients with tumor at the present stage, in order to attract attention to community elderly patients with tumor at home, further improve the service system and quality of life for the elderly patient with tumor. Key words: Geriatric oncology; Comprehensive evaluation; Rehabilitation service

A medico-economic study of trabectedin compared with end-stage treatment in soft tissue sarcomas

The development of new anticancer drugs has strongly contributed to improve patients’ outcomes. However, the question can be raised whether the sometimes minor benefits are worth the cost to both the individuals and the society. The aim of this medico-economic study was to evaluate trabectedin cost-effectiveness compared with end-stage care in the treatment of soft-tissue sarcoma. We retrospectively analyzed data from 45 patients treated with trabectedin for soft tissue sarcoma. Real-life data of clinical benefits and costs of trabectedin were compared with simulated end-stage treatment. Univariate and probabilistic sensitivity analyses identified key drivers of the incremental cost-effectiveness ratio. Trabectedin was associated with longer progression-free survival (4.0 months versus 1.6 months) and higher costs (€24,780 versus €15,490) compared with end-stage treatment. The incremental cost per year of progression-free survival gained with trabectedin was €46,104 (95% confidence interval; €45,039–€47,169). The results were relatively insensitive to changes. Trabectedin was cost-effective in the context of an orphan disease, when used to treat patients with a short life expectancy and few therapeutic options.

Modelling the complete continuum of care using system dynamics: the case of osteoarthritis in Alberta

Estimating how many patients will require care, the nature of the care they require, and when and where they will require it, is critical when planning resources for a sustainable health-care system. Resource planning must consider how quickly patients move among stages of care, the various different pathways they may take and the resources required at each stage. This research presents a preliminary long-term, population-driven system dynamics simulation developed to support resource planning and policy development relating to osteoarthritis care. The simulation models osteoarthritis patients as they transition through the continuum of care from disease onset through end-stage care, and provides insight into the size and characteristics of the patient population, their resource requirements and associated health-care costs. Although the model presented is specific to the osteoarthritis care system in the Province of Alberta, Canada, similar methods could be applied to develop simulations relating to other chronic conditions.

The Importance of Palliative Care in Cancer Rehabilitation

Cancer deaths in many countries rank second only to heart disease and are responsible for 1 out of 4 deaths. Rehabilitation, a cancer patient and treatment of the disease within the limits of the maximum physical, social, psychological, and vocational function is to help gain. Cancer rehabilitation is the main aim of improving the quality of life of the person. Palliative care of patients with end-stage care includes a comprehensive integrated approach to symptom management. Palliative care is playing an increasing role in the disease process, and symptom control in the final stages of life issues become the sole occupation. Deadly delivery models of care for patients with disorders of growth and symptom management, physician experience, and wider empirically derived treatment algorithms have become the need. Palliative care offers the answer to these needs. Advanced diseasemodifying treatments allow for a longer period of survival. This tendency has shaped the treatment of AIDS and many cancers. Although life is extended, lost functions are not brought back. Progressive weakness and dependence physical therapy interest in this group of patients has led to the search. This common base, rehabilitative, palliative patient-specific clinical and academic can be a basis to create a scope.

Care of patients with Huntington's disease in South America: a survey

Huntington's disease (HD) is a rare neurodegenerative disease with a multitude of symptoms, which requires access to specialized multidisciplinary care for adequate management. The aim of this study was to survey the characteristics of care in various HD centers in South America (SA). Methods A questionnaire was sent to 24 centers involved in the care for HD patients in SA. Results Of the total 24 centers, 19 (79.2%) are academic units. The majority of centers (62.5%) are general movement disorders clinics. Multidisciplinary care is available in 19 (79.2%) centers and in 20 (83.3%) care is provided free of charge. Genetic testing and counseling are available in 25 and 66.6% of centers, respectively. The majority of centers (83.3%) have no institutional support for end-stage care. Conclusions Although HD centers in SA are committed to providing multidisciplinary care, access to genetic counseling and end-stage care are lacking in most centers.

Improved Evidence Will Support Sound Decision Making but Will Not Solve the Problem of Cost Containment in Oncology

TO THE EDITOR: In his recent contribution, Caplan 1 suggested four shifts in thinking about the ethics of health care to strengthen the role of evidence in current debates on cost containment. We agree with the statement of Caplan that “evidence is not determinative about what we ought to do.” However, we argue that it is already possible to determine more clearly the kind of evidence that is needed for decision making than was done in the article. Moreover, it seems crucial to clarify the limits of evidence with regards to setting the limits of public health care funding fairly. Caplan 1 envisaged the decision making between patients and physicians as a process in which oncologists provide guidance for prudent choices, especially regarding tough choices in end-stage cancer care. We sympathize with such an approach to deliberative or shared decision making. However, current clinical research does not often provide the evidence needed for discussions about benefits and burdens of “another round of chemotherapy.” 1 Although clinical researchers published rich data regarding the improvement of progression-free survival that did not often translate in the same way to a longer overall survival, 2 there is a scarcity of data on the burdens of such treatment and its effect on the quality of life, especially with respect to the last phase of life. Such patient-orientated research is a prerequisite for “offering an opinion informed by evidence” in situations in which a significant number of patients with advanced cancer understandably enough ask for anything available at the end of their disease trajectory. 3 The need for the right data indicates that value judgments become relevant long before the interpretation of evidence, as seemed to be suggested by Caplan. 1 Examples for normative relevant decisions when data are generated and published are the well-known practices of selective reporting of favorable results and decisions about the study design (ie, noninferior studies, exclusion criteria, and study duration) and the choice of patient-relevant end points or the early stoppage of trials. Value judgments also come into play when systematic reviews are generated that need to synthesize study findings and often play a crucial role in coverage decisions (eg, in the purposes of the Patient

Crisis in Caregiving: When Home-Based End-Of-Life Care is No Longer Possible

Understanding the factors that precipitate caregiving crises that cannot be resolved at home is central to improving options for care at life's end. The purpose of this study was to explore caregivers' perceptions of the crises that preceded and were resolved by relocation during end-of-life care. In-depth interviews were conducted with 36 caregivers of people who died in a hospice house. The results illuminate a conceptual model of the caregiving crisis, which has three stages: (a) precipitating factors--the interrelationship between illness trajectory and reciprocal suffering (physical, psychological, emotional and social distress), (b) crisis, and (c) resolution (settled or unsettled). Relocation presents an opportunity for families to relinquish the burden of end-stage care so that they can resume and complete a lifelong relationship. Careful recognition of and attention to the intimate dynamics that accompany suffering and dying are essential elements of palliative care, which aims to uphold the dignity of the dying person and the integrity of the family in both caregiving and bereavement.

District nurse role in end-stage COPD: a review

District Nurses (DNs) are core providers of end-stage care in the community but appear to have little contact with patients suffering from non-malignant diseases, such as chronic obstructive pulmonary disease (COPD). This review found limited literature describing the role of DNs in end-stage COPD care, and the studies that did touch on the subject restricted their discourse to the frequency of interaction. A clear bias of end-of-life services to patients with malignancy was noted, as well as a call for community services to extend care to all end-stage patients regardless of underlying disease. In addition, there was a further call for DNs to apply a more holistic approach to care, as described in the literature. Finally, it was clear that while ongoing community intervention is necessary for end-stage COPD patients, support and training is essential to equip DNs to care for these vulnerable patients.

Caring for individuals with end-stage dementia at the end of life

Little is known about the beliefs and practices of social workers who work with individuals with end-stage dementia. With more individuals reaching the end stages of the disease, it is crucial to determine how professionals view their work with end-stage dementia patients and their caregivers. During this ethnographic study, the beliefs and practices about dementia care of 13 hospice social workers from the United States were documented for 10 months through interviews, in-field observations, and chart reviews. It was determined that although hospice social workers use a wealth of practice skills with individuals with end-stage dementia and their caregivers and strive to enhance the personhood of the patients, they also possess a neutral to negative view of practice with this population and see their role as limited and ambiguous compared to how they view their work with cognitively intact patients. This study has implications for how hospice social workers and other healthcare professionals provide end-of-life care for patients and families who are dealing with dementia and the types of training that should be implemented in hospice agencies to strengthen end-stage dementia care.

Huntington’s Disease: A Caring Approach to the End of Life

This article describes the challenges of end-of-life care encountered in a specialized long-term care program for people with Huntington's disease (HD). The Promoting Excellence in End-of-Life Care Huntington's Disease Workgroup defines the initiation of palliative care as the point at which independent living is no longer possible. Mobility and lifestyle accommodations for people in the nursing home setting with an early-onset disease are a major feature of this program. The primary end-of-life considerations are advance directives decision-making and anticipating end-stage care needs. Disease progression, denial, family conflict, and clinician blind-spots may impede the development of timely advance directives. The unpredictable and idiosyncratic nature of disease progression impacts decision making for end-of-life care settings and approaches: hospitalization, nursing home stay, and in-house hospice care are the available options. The Workgroup has delineated several priority areas for patient care in HD: autonomy; dignity; meaningful social interaction; communication; comfort; safety and order; spirituality; enjoyment, entertainment and well-being; nutrition; and functional competence. This review also includes a description of the program features in each of these areas.

The Care Needs of Community-Dwelling Seniors Suffering from Advanced Chronic Obstructive Pulmonary Disease

This study was undertaken to determine the care needs of Canadian seniors living at home with advanced chronic obstructive pulmonary disease (COPD). COPD is a leading cause of morbidity and mortality worldwide. Although hospitalizations for illness exacerbations and end-stage care may be common, most persons with COPD live out their lives in the community. Little is known about the care needs of this significant population. This study was guided by the research question: "What are the care needs and care priorities of senior citizens with end-stage COPD?" An ethnographic qualitative approach was used to address this question. Twelve community-dwelling seniors living in a Canadian city and diagnosed with advanced COPD were interviewed three times in their homes over an eight-month period in 2006. Three themes emerged, each with concrete care needs: (a) self-reliance and independence through adaptation, (b) stable health through maintenance, and (c) living with constraints. The predominant theme was that all participants wanted to maintain their independence. This required considerable adaptation, as well as assistance from others. Ensuring and improving assistance is important to prevent additional suffering and reduce exacerbations requiring hospitalization, a particularly important aim given the high and rising incidence of advanced COPD. A number of other insightful findings reveal the significance of learning directly from the persons who live with chronic illnesses about their lives.

Caregiver Grief in Terminal Illness and Bereavement: A Mixed-Methods Study

Caregivers experience multiple losses during the downhill trajectory of a loved one's terminal illness. Using mixed methods, this two-stage study explored caregiver grief during a terminal illness and after the care recipient's death. Caregiver grief was a state of heightened responsiveness during end-stage care: anxiety, hostility, depression, and trouble concentrating, remembering, and getting things done. Following the death, caregiver grief became a state of sustained reactivity: Overall distress was diminished and anxiety and hostility decreased significantly, but loneliness, sadness, and tears increased. Overwhelming responses were triggered by unforeseen visual or auditory reminders of the person. Sleep disturbances began during end-stage care and continued after the death. At both times, caregiver grief was highly influenced by the social context; relationships with family and friends (more cohesive versus conflicted) shaped responses. Social work practitioners can help caregivers who may be unaware they are experiencing grief to identify and integrate these normal responses to loss.

GPs' attitudes to discussing prognosis in severe COPD: an Auckland (NZ) to London (UK) comparison

A palliative care approach, as used routinely in cancer, is also valid for incurable chronic illnesses such as chronic obstructive airways disease (COPD). However, a London study recently reported that general practitioners (GPs), who provide most end-stage care for COPD patients, do not routinely discuss prognosis with these patients. To compare the views of GPs in Auckland, New Zealand (NZ) and London, United Kingdom (UK) on discussions of prognosis in severe COPD. A postal questionnaire of 509 randomly selected Auckland GPs. The questionnaire was almost identical to the UK one. Comparisons were made with aggregated statistics for the London sample as reported in published findings and personal communication with the London authors. The Auckland response rate of 56% was similar to that of the London study (55%). Most GPs in both samples stated that discussions on prognosis are necessary in severe COPD and that GPs have an important role in discussing prognosis. Smaller proportions of both samples reported usually having such discussions, although Auckland GPs (55.6%) were more likely to hold the discussions than were London counterparts (40.7%). Auckland GPs were also more likely to agree that patients with severe COPD want to discuss prognosis and that patients value these discussions. One-third of the Auckland GPs and nearly half the London GPs believe that some patients with severe COPD who want to discuss prognosis are not given the opportunity to do so. Auckland GPs are more open than their London counterparts to discussing prognosis in severe COPD. There is increased scope for GPs in London to discuss prognosis with these patients. Further support is needed for GPs in both countries who do not routinely discuss prognosis in severe COPD, but consider it is necessary to have these discussions.

Discussing life-sustaining treatments: an overview and communications guide for primary care physicians.

Physicians must be skilled communicators with patients, families, and multidisciplinary health care teams to meet ethical decision-making challenges arising in end-stage disease care. We offer practical suggestions for collaborative communication in the "perfect storm" of contemporary critical care settings.