Care of the Spirit: Effects of an Interdisciplinary Undergraduate End-of-Life Course on Knowledge, Competence, and Response Empathy.

The purpose of this pilot was to identify the effects of a 4-credit interdisciplinary undergraduate course focused on communication strategies to enhance spiritual care at the end of life. The course provided students with opportunities to enhance their ability to communicate empathically with individuals facing the end of life. Evidence-based content focused on ways to live each day with hope and gratitude, strengthen relationships, create a legacy, and find meaning and purpose in life and death. Narayanasamy's (1999) Actioning Spirituality and Spiritual Care Education and Training in Nursing model guided project development. The study used a prospective, pretest/posttest design. Participants included undergraduate students (n = 34) from nursing, premedicine, athletic training, business, economics, and religious studies at a Midwest liberal arts college. Statistically significant differences were found in students' attitudes toward and knowledge of spirituality/spiritual care (P < .0001, Cohen's d = 0.59), spiritual care competence (P < .0001, Cohen's d = 0.79), and level of response empathy through role play (P < .0001, Cohen's d = 0.92). Many students referred to this course as "life changing" and "healing." As our students go out into the community, they may intimately touch the lives and hearts of future patients, family, and friends who face the end of life with their compassionate words.

First referral to an integrated onco-palliative care program: a retrospective analysis of its timing.

BACKGROUND: Palliative care (PC) referral is recommended early in the course of advanced cancer. This study aims to describe, in an integrated onco-palliative care program (IOPC), patient's profile when first referred to this program, timing of this referral and its impact on the trajectory of care at end-of-life. METHODS: The IOPC combined the weekly onco-palliative meeting (OPM) dedicated to patients with incurable cancer, and/or the clinical evaluation by the PC team. Oncologists can refer to the multidisciplinary board of the OPM the patients for whom goals and organization of care need to be discussed. We analyzed all patients first referred at OPM in 2011-2013. We defined the index of precocity (IP), as the ratio of the time from first referral to death by the time from diagnosis of incurability to death, ranging from 0 (late referral) to 1 (early referral). RESULTS: Of the 416 patients included, 57% presented with lung, urothelial cancers, or sarcoma. At first referral to IOPC, 76% were receiving antitumoral treatment, 63% were outpatients, 56% had a performance status ≤2 and 46% had a serum albumin level > 35 g/l. The median [1st-3rd quartile] IP was 0.39 [0.16-0.72], ranging between 0.53 [0.20-0.79] (earliest referral, i.e. close to diagnosis of incurability, for lung cancer) to 0.16 [0.07-0.56] (latest referral, i.e. close to death relatively to length of metastatic disease, for prostate cancer). Among 367 decedents, 42 (13%) received antitumoral treatment within 14 days before death, and 157 (43%) died in PC units. CONCLUSIONS: The IOPC is an effective organization to enable early integration of PC and decrease aggressiveness of care near the end-of life. The IP is a useful tool to model the timing of referral to IOPC, while taking into account each cancer types and therapeutic advances.

Interdisciplinary Communication: Documentation of Advance Care Planning and End-of-Life Care in Adolescents and Young Adults With Cancer.

Advance care planning is being increasingly recognized as a component of quality in end-of-life care, but standardized documentation in the electronic health record has not yet been achieved, undermining interdisciplinary communication about care needs and limiting research opportunities.We examined the electronic health records of nine adolescent and young adults with cancer who died after participation in an advance care planning clinical trial (N = 30). In this secondary analysis of this subgroup, disease trajectory and end-of-life information were abstracted from the electronic health record, and treatment preferences from the original study were obtained.All deceased participants older than 18 years had a surrogate decision maker identified in the electronic health record, and all deceased participants had limitations placed on their care, varying from 1.5 hours up to 2 months before death. However, assessment of relations between treatment preferences and end-of-life care was difficult and revealed the presence of circumstances that advance care planning is designed to avoid, such as family conflict. Lack of an integrated health care record regarding advance care planning and end-of-life care makes both care coordination and examination of the association between planning and goal concordant care more difficult.

Advanced care planning in adult congenital heart disease: Transitioning from repair to palliation and end-of-life care.

As a result of advances in pediatric care, the majority of patients born with congenital heart disease (CHD) survive into adulthood [1]. Effective transfer and transition programs assure that patients with CHD remain in follow-up and receive continuous holistic care. Unfortunately, adult patients with CHD carry residual lesions and sequelae putting them at risk for premature death related to re-interventions or complications; most commonly heart failure and arrhythmia [2]. The scientific adult CHD (ACHD) community has been working hard to identify variables related to worse outcomes, modifying those where possible in order to improve survival. Indeed, survival in adults with CHD has increased, but consequently, on top of CHD-related complications, patients are increasingly exposed to the standard cardiovascular risk factors. Therefore, a program for lifelong coaching on health behavior and life style management becomes indispensable. More emerging is that a substantial number of patients, in particular those with complex heart defects, will eventually end up in a stage with hardly any medical or interventional options left. Our healthcare provision has to be prepared to organize care for this specific group of patients who will die prematurely and require the timely development and establishment of advanced care planning. Advanced care planning should preferentially be set-up in expert CHD centers. The long-lasting relationship in ACHD care with healthcare providers offers an excellent basis with regards to prognosis, advanced care planning and end-of-life issues.

Care Needs of Patients at the End of Life With a Noncancer Diagnosis Who Live at Home.

BACKGROUND: As the population ages, the prevalence of various chronic diseases increases. Palliative care for patients at the end of life with a noncancer diagnosis is currently limited because of the difficulties of demarcating the boundaries of the end-of-life care period and of determining the various care needs of patients at the end of life. PURPOSE: This study aimed to investigate the levels of importance and difficulty of the multidimensional care needs for patients with a noncancer diagnosis during various end-of-life stages. METHODS: This study is a retrospective survey. Home healthcarenurse specialists (HHNS) reviewed medical and nursing records and responded to a structured questionnaire. The caring experiences of HHNS with 115 patients, who were 40 years or older, had received home care nursing throughout the stable (between the onset of the end-of-life stage and 1 week before death) and near-death (1 week before death) stages at Seoul St. Mary's Hospital in Korea, and had died between September 1, 2014, and December 31, 2015, were analyzed. RESULTS: The care needs of "coordination among family or relatives" and "support for fundamental needs" were more important in the stable stage than in the near-death stage. The care need of "loss, grief care" was more important in the near-death stage than in the stable stage. The care need of "physical symptoms management" was the most difficult to meet in both stages. Lower Palliative Performance Scale score was associated with a higher level of care need, particularly in the "management of physical symptoms" and "psychological support" realms in the stable stage and in the "coordination among family or relatives" realm in both stages. CONCLUSIONS: End-of-life stage and initial score on the Palliative Performance Scale were found to have a significant influence on the multidimensional care needs of patients with a noncancer diagnosis. Thus, healthcare professionals should assess patient care needs according to disease trajectory to provide continuous and holistic care.

Drug consumption and futile medication prescribing in the last year of life: an observational study.

Background: the last year of life for many older people is associated with high symptom burden and frequent hospitalizations. Hospital physicians have an opportunity to prioritize essential medications and deprescribe potentially futile medications. Objective: to measure medication consumption during hospitalization in the last year of life and the prevalence of potentially inappropriate medications (PIMs) at hospital discharge. Design: retrospective chart review. Setting: acute hospital. Subjects: ≥65 years, hospitalized in the last year of life. Methods: medication consumption was determined by examining hospital Medication Administration Records. PIMs were defined using STOPPFrail deprescribing criteria. Results: the study included 410 patients. The mean age of participants was 80.8, 49.3% were female, and 63.7% were severely frail. The median number of days spent in hospital in the last year of life was 32 (interquartile range 15-59). During all hospitalizations, the mean number of individual medications consumed was 23.8 (standard deviation 10.1). One-in-six patients consumed 35 or more medications in their last year. Over 80% of patients were prescribed at least one PIM at discharge and 33% had ≥3 PIMs. Lipid-lowering medications, proton pump inhibitors, anti-psychotics and calcium supplements accounted for 59% of all PIMs. Full implementation of STOPPFrail recommendations would have resulted in one-in-four long-term medications being discontinued. Conclusion: high levels of medication consumption in the last year of life not only reflect high symptom burden experienced by patients but also continued prescribing of futile medications. Physicians assisted by the STOPPFrail tool can reduce medication burden for older people approaching end of life.

A co-design process developing heuristics for practitioners providing end of life care for people with dementia.

BACKGROUND: The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia. METHODS: An iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with dementia. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice. RESULTS: Four broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing "routine care" at the end of life. Each topic became a heuristic consisting of rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering 'comfort feeding' only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer's wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting the delivery of care, in order to promote comfort and dignity at the end of life. CONCLUSIONS: The heuristics are easy to use and remember, offering a novel approach to decision making for dementia end-of-life care. They have the potential to be used alongside existing end-of-life care recommendations, adding more readily available practical assistance. This is the first study to synthesise experience and existing evidence into easy-to-use heuristics for dementia end-of-life care.

Integrating palliative care with usual care of diabetic foot wounds.

Palliative care is a philosophy and a system for deciding care and can be used alone or integrated with usual chronic disease care. Palliative care encompasses end-of-life care. Palliative care aims to enhance quality of life, optimize function and manage symptoms including early in the course of chronic diseases. The purposes of this article are to outline palliative care and discuss how it can be integrated with usual care of diabetic foot wounds. Many people with diabetes who have foot wounds also have other comorbidities and diabetes complications such as cardiovascular and renal disease and depression, which affect medicine and other treatment choices, functional status, surgical risk and quality of life. Two broad of diabetic foot disease exist: those likely to heal but who could still benefit from integrated palliative care such as managing pain and those where healing is unlikely where palliation can be the primary focus. People with diabetes can die suddenly, although the life course is usually long with periods of stable and unstable disease. Many health professionals are reluctant to discuss palliative care or suggest people to document their end-of-life care preferences. If such preferences are not documented, the person might not achieve their desired death or place of death and health professionals and families can be confronted with difficult decisions. Palliative care can be integrated with usual foot care and is associated with improved function, better quality of life and greater patient and family satisfaction.

[Bioethics is dead. Long live medical ethics!]. / La Bioética ha Muerto. ¡Viva la Ética Médica!

The purpose of this paper is to show a paradigmatic crisis in academic bioethics. Since an important part of bioethicists began to relativize the ethical prohibition of killing an innocent human being, one way or another they began to ally with the death industry: the business of abortion, and then that of euthanasia. The thesis of this paper is that by crossing that Rubicon bioethics has been corrupted and has lost its connection to the ethical, political and legal discourse. One can only hope that it will revive from its ashes if it retakes the ″taboo″ of the sacredness of human life, something for which medical ethics could provide invaluable help, because it still keeps the notion that ″a doctor should not kill″, although in an excessively ″discreet″ and somehow ″ashamed″ way. However, conscientious doctors know more about ethics than most bioethicists.

[The current situation of palliative medicine in Germany--clinical implications, education and research]. / Palliativmedizin--Aktueller Stand in Klinik, Forschung und Lehre.

Palliative medicine (or palliative care, referring to its multi-professional character) denotes a comprehensive care concept for patients suffering from incurable and progressive disease, and their relatives. Specialized support structures are necessary, including (inpatient) palliative care units, (inpatient) consultation services, and (outpatient) specialized palliative home care services. Further, research and education is mandatory in order to gain and to spread this particular expertise and attitude. This contribution focuses on the current situation and on the development of palliative care structures in Germany.

2013: that was the year that was.

In caring for older people, geriatricians have always adopted a multi-domain approach, and this article reflects on the diverse aspects covered by journals in general medicine, geriatric medicine and gerontology in 2013. Topics were selected that represented developing or controversial areas that are important to care of increasingly frail older people. These include the increasing use of single physical performance measures in assessment, optimal body mass index, assessment of frailty and sarcopenia, dementia, diabetes treatment goals, end-of-life care, management of complexity and design of health and social services to meet complexity. The increasingly important role of patient and carer engagement in management of disease and syndromes is highlighted. In particular, two eloquent articles from prominent physicians who have been experiencing the ageing process and demands of being a dementia carer provide a timely reminder of what the reality is in grappling with the inexorable decline that occurs with ageing, and caregiving as the central core to what medicine is all about. Looking towards the future, the potential of robotic technology, modifying the physical and social living environment in improving quality of care and quality of life is described.

New horizons in care home medicine.

Care home medicine has been an under-researched area, but over the last decade there has been a substantial growth in publications. Most of these have focused on the 'geriatric giants' of falls, incontinence and mental health issues (especially dementia, behavioural disturbance and depression) as well as other key topics such as medication use and issues related to death and dying. Other areas of recent interest are around access to health services for care home residents, how such services may most effectively be developed and how the quality of life for residents can be enhanced. While many of the reported studies are small and not always well designed, evidence in several areas is emerging which begins to guide service developments. A common theme is that multi-disciplinary interventions are the most effective models of delivery. The role of care home staff as members of these teams is key to their effectiveness. Recent consensus guidelines around falls prevention in care homes synthesise the evidence and recommend multi-disciplinary interventions, and clarify the role of vitamin D and of exercise in certain populations in the care home. The benefits of pharmacist led medication reviews are beginning to emerge; although studies reviewed to date have not yet led to the 'holy grail' of hospital admission avoidance they point to benefits in reduction of drug burden. Effectiveness may be enhanced when working with GPs and care home nurses. Welcome evidence is emerging that in the UK the rate of prescription of anti-psychotics has fallen. This is clear evidence that changes in practice around care homes can be effected. The poor access to non-pharmacological therapies for care home residents with behavioural disturbance remains a significant gap in service. End-of-life care planning and delivery is an important part of care in care homes, and there is evidence that integrated pathways can improve care; however, the use of palliative care medications was limited unless specialist care staff were involved. Integrated models of care that focus on resident-centred goals and which value the role of care home staff as members of the team working to deliver these goals are most likely to result in improvements in the quality of care experienced by care home residents.

La atención espiritual al final de la vida en los domicilios / Spiritual end of life domiciliary care: a bibliographic review

Se efectúa una revisión bibliográfica descriptiva sobre el tema de la espiritualidad, en un entorno de cuidados paliativos a enfermos adultos, con diferentes patologías, que se encuentran en una etapa avanzada de la enfermedad. Se analiza la construcción sociocultural de la espiritualidad al final de la vida en el medio domiciliario, relacionándola con el proceso de la enfermedad, terminalidad y muerte. Se describe el acompañamiento de los profesionales de enfermería en cuidados paliativos (CP) en la atención a las necesidades espirituales, desde un conocimiento integral. Debe considerarse que si los profesionales enfermeros tienen en cuenta la espiritualidad de los pacientes con una enfermedad terminal, estando presente la espiritualidad y la religiosidad, deberían contar con unas estrategias establecidas en sus acciones para ofrecer un bienestar espiritual (AU)

This article is a descriptive literature review on the topic of spirituality, in a palliative care aimed at adult patients with different pathologies that are in an advanced stage of the disease. We analyze the sociocultural construction of spirituality at the end of life in the domiciliary environment, relating it to the disease process, its terminality and death. We describe the attention of the palliative-nurses, caring for the spiritual needs from a holistic point of view. It has to be considered that if the palliative-nurses are aware of the spirituality of patients with terminal illness should have some established strategies in their efforts to provide spiritual comfort (AU)

Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training.

PURPOSE: To determine factors contributing to the infrequent provision of spiritual care (SC) by nurses and physicians caring for patients at the end of life (EOL). PATIENTS AND METHODS: This is a survey-based, multisite study conducted from March 2006 through January 2009. All eligible patients with advanced cancer receiving palliative radiation therapy and oncology physician and nurses at four Boston academic centers were approached for study participation; 75 patients (response rate = 73%) and 339 nurses and physicians (response rate = 63%) participated. The survey assessed practical and operational dimensions of SC, including eight SC examples. Outcomes assessed five factors hypothesized to contribute to SC infrequency. RESULTS: Most patients with advanced cancer had never received any form of spiritual care from their oncology nurses or physicians (87% and 94%, respectively; P for difference = .043). Majorities of patients indicated that SC is an important component of cancer care from nurses and physicians (86% and 87%, respectively; P = .1). Most nurses and physicians thought that SC should at least occasionally be provided (87% and 80%, respectively; P = .16). Majorities of patients, nurses, and physicians endorsed the appropriateness of eight examples of SC (averages, 78%, 93%, and 87%, respectively; P = .01). In adjusted analyses, the strongest predictor of SC provision by nurses and physicians was reception of SC training (odds ratio [OR] = 11.20, 95% CI, 1.24 to 101; and OR = 7.22, 95% CI, 1.91 to 27.30, respectively). Most nurses and physicians had not received SC training (88% and 86%, respectively; P = .83). CONCLUSION: Patients, nurses, and physicians view SC as an important, appropriate, and beneficial component of EOL care. SC infrequency may be primarily due to lack of training, suggesting that SC training is critical to meeting national EOL care guidelines.

Palliative care nursing for children in the UK and Ireland.

Currently, there are many changes taking place in the area of paediatric palliative care. These include the role of the nurse, development of national policies, and recommendations for the future of paediatric palliative care. This article discusses palliative care for children with life-limiting conditions in the UK and Ireland, highlights national and international developments in this area, describes current services, and makes recommendations for future developments. Paediatric palliative care should be holistic, family centred and tailored to meet the needs of each child and family. Palliative care should promote autonomy and allow informed choices regarding end-of-life care. Palliative care should begin at the time of diagnosis and continue beyond illness, through the bereavement process. It should be adaptable to allow care delivery in any setting; home, hospice or hospital. Health professionals providing paediatric palliative care should be appropriately trained in this specialist field and the best interests of the child should always be at the forefront of care.

Reduced use of chemotherapy at the end of life in an integrated-care model of oncology and palliative care.

AIMS AND BACKGROUND: When there is little hope of a clinical benefit, too delayed a withdrawal from chemotherapy might be detrimental for a patient's quality of life. We evaluated appropriately timed cessation of chemotherapy in our Oncology Department after integration of a Supportive and Palliative Care Unit. METHODS: We carried out a review of deceased patients in our department from January 2006 to December 2009. Activities of the Supportive and Palliative Care Unit started in late 2007. We analyzed the characteristics of patients near the end of life and chemotherapy use within 30 days of death as an aggressiveness of cure index. RESULTS: During the considered period, 361 hospitalized patients died: 69 in 2006, 77 in 2007, 97 in 2008 and 118 in 2009; 102 never received chemotherapy. Sixty-one of the remaining 259 patients died within 30 days of the last drug administration. The percentage of patients receiving chemotherapy in their last 30 days fell from 19% in 2006 and 20% in 2007, to 16% in 2008 and 14% in 2009. CONCLUSIONS: Supportive and Palliative Care Unit integration decreased chemotherapy use in the last 30 days of life. A careful evaluation of prognostic factors of advanced cancer patients and provision of appropriate supportive and palliative cares can reduce the use of futile anticancer chemotherapy and preserve a patient's qualify of life.