Validation of the German version of the needs assessment tool: progressive disease-heart failure.

BACKGROUND: The Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF) is a tool created to assess the needs of people living with heart failure and their informal caregivers to assist delivering care in a more comprehensive way that addresses actual needs that are unmet, and to improve quality of life. In this study, we aimed to (1) Translate the tool into German and culturally adapt it. (2) Assess internal consistency, inter-rater reliability, and test-retest reliability of the German NAT: PD-HF. (3) Evaluate whether and how patients and health care personnel understand the tool and its utility. (4) Assess the tool's face validity, applicability, relevance, and acceptability among health care personnel. METHODS: Single-center validation study. The tool was translated from English into German using a forward-backward translation. To assess internal consistency, we used Cronbach´s alpha. To assess inter-rater reliability and test-retest reliability, we used Cohen´s kappa, and to assess validity we used face validity. RESULTS: The translated tool showed good internal consistency. Raters were in substantial agreement on a majority of the questions, and agreement was almost perfect for all the questions in the test-retest analysis. Face validity was rated high by health care personnel. CONCLUSION: The German NAT: PD-HF is a reliable, valid, and internally consistent tool that is well accepted by both patients and health care personnel. However, it is important to keep in mind that effective use of the tool requires training of health care personnel.

Recommendations for advance care planning in adults with congenital heart disease: a position paper from the ESC Working Group of Adult Congenital Heart Disease, the Association of Cardiovascular Nursing and Allied Professions (ACNAP), the European Association for Palliative Care (EAPC), and the International Society for Adult Congenital Heart Disease (ISACHD).

Survival prospects in adults with congenital heart disease (CHD), although improved in recent decades, still remain below expectations for the general population. Patients and their loved ones benefit from preparation for both unexpected and predictable deaths, sometimes preceded by a prolonged period of declining health. Hence, advance care planning (ACP) is an integral part of comprehensive care for adults with CHD. This position paper summarizes evidence regarding benefits of and patients' preferences for ACP and provides practical advice regarding the implementation of ACP processes within clinical adult CHD practice. We suggest that ACP be delivered as a structured process across different stages, with content dependent upon the anticipated disease progression. We acknowledge potential barriers to initiate ACP discussions and emphasize the importance of a sensitive and situation-specific communication style. Conclusions presented in this article reflect agreed expert opinions and include both patient and provider perspectives.

Unmet device reprogramming needs at the end of life among patients with implantable cardioverter defibrillator: A systematic review and meta-analysis.

BACKGROUND: Use of implantable cardioverter defibrillators is increasingly common. As patients approach the end of life, it is appropriate to deactivate the shock function. AIM: To assess the prevalence of implantable cardioverter defibrillator reprogramming to deactivate the shock function at the end of life and the prevalence of advance directives among this population. DESIGN: Following a previously established protocol available in PROSPERO, we performed a narrative synthesis of our findings and used the logit transformation method to perform our quantitative synthesis. DATA SOURCES: We searched seven bibliographic databases (Embase, Cochrane Central register of controlled Trials, Medline-Ovid, Web-of-Science, Scopus, PsychInfo, and CINAHL) and additional sources until April 2019. RESULTS: Of the references we identified, 14 were included. We found a pooled prevalence of implantable cardioverter defibrillator reprogramming at the end of life of 28% (95% confidence interval, 22%-36%) with higher reprogramming rates after the recommendations for managing the device at the end of life were published. Among patients with advance directives, the pooled prevalence of advance directives that explicitly mentioned the device was 1% (95% confidence interval, 1%-3%). CONCLUSIONS: The prevalence of implantable cardioverter defibrillator reprogramming and advance directives that explicitly mentioned the device was very low. Study data suggested reprogramming decisions were made very late, after the patient experienced multiple shocks. Patient suffering could be ameliorated if physicians and other healthcare professionals adhere to clinical guidelines for the good management of the device at the end of life and include deactivating the shock function in the discussion that leads to the advance directive.

Dosimetrically administered nebulized morphine for breathlessness in very severe chronic obstructive pulmonary disease: a randomized, controlled trial.

BACKGROUND: Systemic morphine has evidence to support its use for reducing breathlessness in patients with severe chronic obstructive pulmonary disease (COPD). The effectiveness of the nebulized route, however, has not yet been confirmed. Recent studies have shown that opioid receptors are localized within epithelium of human trachea and large bronchi, a target site for a dosimetric nebulizer. The aim of this study was to compare any clinical or statistical differences in breathlessness intensity between nebulized 2.0% morphine and 0,9% NaCl in patients with very severe COPD. METHODS: The study was a double-blind, controlled, cross-over trial. Participants received morphine or NaCl during two 4-day periods. Sequence of periods was randomized. The primary outcome measure was reduction of breathlessness intensity now by ≥20 mm using a 100 mm visual analogue scale (VAS) at baseline, 15, 30, 60, 120, 180 and 240 min after daily administration, during normal activities. RESULTS: Ten of 11 patients included completed the study protocol. All patients experienced clinically and statistically significant (p < 0.0001) breathlessness reduction during morphine nebulization. Mean VAS changes for morphine and 0.9% NaCl periods were 25.4 mm (standard deviation (SD): 9.0; median: 23,0; range: 14.0 to 41,5; confidence interval (CI): 95%) and 6.3 mm (SD: 7.8; median: 6.8; range: -11,5 to 19,5; CI: 95%), respectively. No treatment emergent adverse effects were noted. DISCUSSION: Our study showed superiority of dosimetrically administered nebulized morphine compared to NaCl in reducing breathlessness. This may have been achieved through morphine's direct action on receptors in large airways, although a systemic effect from absorption through the lungs cannot be excluded. TRIAL REGISTRATION: Retrospectively registered (07.03.2017), ISRCTN14865597.

The presence of mu-, delta-, and kappa-opioid receptors in human heart tissue.

Functional evidence suggests that the stimulation of peripheral and central opioid receptors (ORs) is able to modulate heart function. Moreover, selective stimulation of either cardiac or central ORs evokes preconditioning and, therefore, protects the heart against ischemic injury. However, anatomic evidence for OR subtypes in the human heart is scarce. Human heart tissue obtained during autopsy after sudden death was examined immunohistochemically for mu- (MOR), kappa- (KOR), and delta- (DOR) OR subtypes. MOR and DOR immunoreactivity was found mainly in myocardial cells, as well as on sparse individual nerve fibers. KOR immunoreactivity was identified predominantly in myocardial cells and on intrinsic cardiac adrenergic (ICA) cell-like structures. Double immunofluorescence confocal microscopy revealed that DOR colocalized with the neuronal marker PGP9.5, as well as with the sensory neuron marker calcitonin gene-related peptide (CGRP). CGRP-immunoreactive (IR) fibers were detected either in nerve bundles or as sparse individual fibers containing varicose-like structures. Our findings offer the first hint of an anatomic basis for the existence of OR subtypes in the human heart by demonstrating their presence in CGRP-IR sensory nerve fibers, small cells with an eccentric nucleus resembling ICA cells, and myocardial cells. Taken together, this suggests the role of opioids in both the neural transmission and regulation of myocardial cell function.

Regular, low-dose methadone for reducing breathlessness in people experiencing or at risk of neurotoxic effects from morphine: A single-center case series.

Breathlessness is a common symptom suffered by people living with advanced malignant and non-malignant diseases, one which significantly limits their quality of life. If it emerges at minimal exertion, despite the maximal, guidelines-directed, disease-specific therapies, it should be considered persistent and obliges clinicians to prescribe symptomatic, non-pharmacological, and pharmacological treatment to alleviate it. Opioids are recommended for the symptomatic treatment of persistent breathlessness, with morphine most extensively studied for this indication. It is extensively metabolized in the liver into water-soluble 3- and 6-glucuronides, excreted by the kidneys. In the case of advanced renal failure, the glucuronides accumulate, mainly responsible for toxicity 3-glucuronides. Some people, predominantly those with advanced renal failure, develop neurotoxic effects after chronic morphine, even when prescribed at a very low dose. A single-center case series of consecutive patients experiencing neurotoxic effects after long-term, low-dose morphine or at risk of such effects were transferred to methadone to avoid the accumulation of neurotoxic metabolites. Over the course of 4.5 years, 26 patients have been treated with methadone in the median dose of 3.0 mg/24 h p.o., for persisting breathlessness. Sixteen of them had been treated previously with an opioid (usually morphine) at the median dose of 7.0 mg/24 h (morphine oral daily dose equivalent). They were transferred to methadone, with the median dose of 3.0 mg/24 h orally (methadone oral daily dose equivalent), and the median morphine-to-methadone dose ratio was 2.5:1. All patients experienced a meaningful improvement in breathlessness intensity after methadone, by a median of 5 points (range 1-8) on the 0-10 numerical rating scale (NRS) in the whole group, and by 2 points (range 0-8) in those pretreated with other opioids, mainly morphine. Low-dose methadone can be considered an efficient alternative to morphine for reducing breathlessness in people experiencing neurotoxic effects or at risk of developing them following treatment with morphine.

Palliative care provision for people living with heart failure: The Geneva model.

As life expectancy rises and the survival rate after acute cardiovascular events improves, the number of people living and dying with chronic heart failure is increasing. People suffering from chronic ischemic and non-ischemic heart disease may experience a significant limitation of their quality of life which can be addressed by palliative care. Although international guidelines recommend the implementation of integrated palliative care for patients with heart failure, models of care are scarce and are often limited to patients at the end of life. In this paper, we describe the implementation of a model designed to improve the early integration of palliative care for patients with heart failure. This model has enabled patients to access palliative care when they normally would not have and given them the opportunity to plan their care in line with their values and preferences. However, the effectiveness of this interdisciplinary model of care on patients' quality of life and symptom burden still requires evaluation.

Comprehensive care for people living with heart failure and chronic obstructive pulmonary disease-Integration of palliative care with disease-specific care: From guidelines to practice.

Heart failure (HF) and chronic obstructive pulmonary disease (COPD) are the leading global epidemiological, clinical, social, and economic burden. Due to similar risk factors and overlapping pathophysiological pathways, the coexistence of these two diseases is common. People with severe COPD and advanced chronic HF (CHF) develop similar symptoms that aggravate if evoking mechanisms overlap. The coexistence of COPD and CHF limits the quality of life (QoL) and worsens symptom burden and mortality, more than if only one of them is present. Both conditions progress despite optimal, guidelines directed treatment, frequently exacerbate, and have a similar or worse prognosis in comparison with many malignant diseases. Palliative care (PC) is effective in QoL improvement of people with CHF and COPD and may be a valuable addition to standard treatment. The current guidelines for the management of HF and COPD emphasize the importance of early integration of PC parallel to disease-modifying therapies in people with advanced forms of both conditions. The number of patients with HF and COPD requiring PC is high and will grow in future decades necessitating further attention to research and knowledge translation in this field of practice. Care pathways for people living with concomitant HF and COPD have not been published so far. It can be hypothesized that overlapping of symptoms and similarity in disease trajectories allow to draw a model of care which will address symptoms and problems caused by either condition.

Palliative Care for People Living With Heart Disease-Does Sex Make a Difference?

The distribution of individual heart disease differs among women and men and, parallel to this, among particular age groups. Women are usually affected by cardiovascular disease at an older age than men, and as the prevalence of comorbidities (like diabetes or chronic pain syndromes) grows with age, women suffer from a higher number of symptoms (such as pain and breathlessness) than men. Women live longer, and after a husband or partner's death, they suffer from a stronger sense of loneliness, are more dependent on institutionalized care and have more unaddressed needs than men. Heart failure (HF) is a common end-stage pathway of many cardiovascular diseases and causes substantial symptom burden and suffering despite optimal cardiologic treatment. Modern, personalized medicine makes every effort, including close cooperation between disciplines, to alleviate them as efficiently as possible. Palliative Care (PC) interventions include symptom management, psychosocial and spiritual support. In complex situations they are provided by a specialized multiprofessional team, but usually the application of PC principles by the healthcare team responsible for the person is sufficient. PC should be involved in usual care to improve the quality of life of patients and their relatives as soon as appropriate needs emerge. Even at less advanced stages of disease, PC is an additional layer of support added to disease modifying management, not only at the end-of-life. The relatively scarce data suggest sex-specific differences in symptom pathophysiology, distribution and the requisite management needed for their successful alleviation. This paper summarizes the sex-related differences in PC needs and in the wide range of interventions (from medical treatment to spiritual support) that can be considered to optimally address them.

Palliative care for people living with cardiac disease.

Many cardiovascular diseases lead to heart failure, which is a progressive syndrome causing significant distress and limiting the quality of life, despite optimal cardiologic treatment. It is estimated that about 26 000 people in Poland suffer from advanced heart failure, and this number is growing. That is why palliative care (PC) dedicated to people living with end­stage cardiac diseases should be urgently implemented in Poland. Well­organized PC may not only relieve symptoms and improve quality of life in people living with cardiac diseases not responding to treatment but also support patients and their families during the dying process. Palliative care in patients with cardiac diseases should be continued during the end-of-life period. It should be implemented regardless of prognosis, and adjusted to patients' needs. Two approaches to PC are presented in this expert opinion. The first one (generic) is provided by all medical professionals incorporating PC principles into the usual patient care. The second approach, namely, specialized PC, is ensured by a multiprofessional team or at least a PC specialist who received appropriate training in PC. The model of needs-based (not prognosis-based) implementation of PC is discussed in this paper. Symptom control, support in decision-making, and sensitive, open communication are considered integral elements of PC interventions. Medical professionals developing PC in Poland should think about groups of patients with special needs like those with valvular heart disease, grown­up congenital heart disease, and pulmonary arterial hypertension, as well as elderly people. This consensus document presents main recommendations for future PC organization in Poland. Among others, we suggest changing the Polish National Health Fund reimbursement rules regarding PC and improving cardiologist education on PC.

Palliative care for people living with heart failure: European Association for Palliative Care Task Force expert position statement.

Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, when PC needs emerge. These needs can be of physical, emotional, social, or spiritual nature. This document encourages the use of validated assessment tools to recognize such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific aspects, such as modification of implantable device activity at the end of life. The Whole Person Care concept describes the inseparability of the physical, emotional, and spiritual dimensions of the human being. Addressing psychological and spiritual needs, together with medical treatment, maintains personal integrity and promotes emotional healing. Most PC concerns can be addressed by the usual care team, supported by a PC specialist if needed. During dying, the persons' needs may change dynamically and intensive PC is often required. Following the death of a person, bereavement services benefit loved ones. The authors conclude that the inclusion of PC within the regular clinical framework for people with heart failure results in a substantial improvement in quality of life as well as comfort and dignity whilst dying.

Institution of the health care agent in Polish legislation: position of the Polish Working Group on End-of-Life Ethics.

INTRODUCTION In numerous countries legislation has been put in place allowing citizens to appoint persons authorized to make medical decisions on their behalf, should the principal lose such decision­making capacity. OBJECTIVES The paper aimed to prepare a draft proposal of legal regulations introducing into Polish legislation the institution of the health care agent. PATIENTS AND METHODS The draft proposal has been grounded in 6 expertise workshops, in conjunction with several online debates. RESULTS The right to appoint a health care agent should apply to all persons of full legal capacity, and to minors over 16 years of age. Every non-legally incapacitated adult person would be eligible to be appointed a health care agent. Appointment of substitute agents should also be legally provided for. The prerogatives of health care agents would come into effect upon the principals' loss of their decisionmaking capacity, or upon the principals' waiving their right to be provided with pertinent information on their health status. The health care agents would make decisions in all matters pertaining to medical treatment, while remaining under no obligation to perform any hands-on caring duties for their principals. The term of medical power-of-attorney should be discretionary, while its revocation or resignation should be possible at any time. In the event of health care agents' inactivity, or in the event that their actions should appear contrary to the principals' best interests, an attending physician should notify a pertinent court of law whose prerogatives would facilitate revocation of a medical power-of-attorney.  CONCLUSIONS Statutory appointment of a health care agent allows every citizen to appoint in this capacity a person who, to the best of his or her knowledge, would best represent his or her interests in the event that the principal should ultimately lose the capacity to make medical decisions on his or her own behalf.

End-of-life matters in chronic heart failure patients.

PURPOSE OF REVIEW: Until recently, concepts of care for people with heart failure had rarely included preparation for unavoidable imminent death or caring for the dying.The purpose of this review is to provide an update on current end-of-life issues specific to heart failure patients. RECENT FINDINGS: Mortality in the heart failure population remains high, especially shortly after the first acute heart failure hospitalization. Patients with systolic heart failure die more frequently from progressive heart failure or sudden cardiac death; patients with diastolic heart failure for noncardiovascular reasons and sudden cardiac death. The mode of haemodynamic decline leading to heart failure death can be characterised by low cardiac output (with or without secondary end-organ dysfunction), congestion, or a combination of both. A new model of end-of-life trajectories has been proposed which takes into account influence of comorbidities on the prognosis of heart failure. Advance care planning for patients with implanted cardiac devices has been shown to be unsatisfactory. A recent strategy for managing implantable cardioverter defibrillators in patients approaching death is presented. SUMMARY: There is an emerging need to define specific challenges for end-of-life care for approaching death in heart failure patients. More research and education are needed to improve care for dying heart failure patients, including those with implanted cardiac devices.

Opioid receptor bronchial tree: current science.

PURPOSE OF REVIEW: Systemic opioids have the evidence to support their use in refractory dyspnea; however, the mechanisms of how they exert their effects are not fully understood. The relevance of peripheral mechanisms, in part, is still questioned, especially as a meta-analysis demonstrated no benefit from nebulized opioids. This might be related to the lack of standardization of the inhalation methods. There is a need to clarify whether peripheral opioid receptors may serve as the target for inhaled treatment and what are the potential peripheral mechanisms of opioids. RECENT FINDINGS: Opioidergic systems are present in structures important for the regulation of bronchial and pulmonary vascular responses, as well as breathlessness perception in the human respiratory system. Opioid receptors located in the pulmonary neuroendocrine cells (PNECs) and sensory C-fibers within the bronchial epithelium are easily accessible for inhaled treatment. Morphine administrated by a pneumodosimetric method shows a different pharmacokinetic profile to those described for systemic routes, suggesting local metabolism in lung. SUMMARY: Research suggests that peripheral opioid receptors in lungs may be utilized as a target for therapeutic interventions. According to this hypothesis, to achieve breathlessness relief, opioids should be administered in close proximity to their receptors in the PNECs and sensory C-fibers of the bronchial epithelium.

[High-risk pulmonary embolism in early post-operative period]. / Zator tetnicy plucnej wysokiego ryzyka u pacjenta we wczesnym okresie pooperacyjnym.

High risk pulmonary embolism remains a major diagnostic and therapeutic challenge. One of the most difficult clinical situation is pulmonary embolism in patients in early postoperative period as most of them has contraindication to fibrinolysis. In this paper we present the case of patient with thrombophilia and pulmonary embolism diagnosed on the third day after cancer-related laparoscopic prostatectomy. Patient was successfully treated by means of percutaneous catheter thrombus defragmentation and intraarterial infusion of the reduced dose of alteplase.

[Angina pectoris due to coronary-subclavian steal syndrome caused by the LIMA graft in the patient after CABG with the use of the right and left mammary artery]. / Dlawica piersiowa niestabilna spowodowana zespolem podkradania wiencowo-podobojczykowego przez LIMA z jednoczesnym krytycznym zwezeniem RIMA u pacjenta po CABG z uzyciem dwóch tetnic piersiowych wewnetrznych.

We present a case of a patient with unstable angina pectoris two years after coronary artery by-pass graft surgery with the use of the right and left mammary artery. The symptoms were caused by the critical RIMA stenosis and coronary-subclavian steal syndrome through the LIMA graft. Unsuccessful attempt of percutaneous angioplasty of the closed left subclavian artery was made. The angioplasty of the proximal part of the RIMA with the implantation of a drug eluting stent followed by the angioplasty of both left circumflex artery and obtuse marginal artery with the implantation of bare metal stents was performed. These procedures resulted in disappearance of anginal symptoms. Neurological examination did not reveal any signs of vertebrobasilar steal.

[Severe tachycardiomyopathy and thrombus in the left atrial appendage--a case report]. / Zaawansowana kardiomiopatia tachyarytmiczna i przewlekla, oporna na leczenie skrzeplina w uszku lewego przedsionka.

We describe a case of severe left ventricular (LV) heart failure caused by tachycardiomyopathy with concomitant presence of unsolved thrombus in left atrial appendage despite effective oral anticoagulant treatment. Successful ablation of atrial flutter and atrioventricular nodal reentry tachycardia entailed resolution of heart failure symptoms and normalisation of LV function.