OBJECTIVES: Mechanical ventilation (MV) has been shown to improve survival and quality of life in motor neuron disease (MND). However, during the progression of MND, there may come a point when MV is no longer felt appropriate. Association of Palliative Medicine Guidelines have been recently published to help clinicians withdraw MV at the request of patients with MND in a safe and compassionate manner to ensure that symptoms of distress and dyspnoea are minimised.
METHODS: In this report, we discuss the palliative and ventilatory management of six ventilator-dependent patients with MND who had requested the withdrawal of MV as part of their end-of-life care.
RESULTS: We have withdrawn MV from six patients with MND at their request and our practice has been influenced by the Association of Palliative Medicine Guidelines.
CONCLUSION: Withdrawal of MV in MND at a patient's request is challenging but is also a fundamental responsibility of healthcare teams. We discuss the lessons we have learnt which will influence our practice and help other teams in the future.
BACKGROUND: The use of noninvasive ventilation (NIV) in the emergency setting to reverse hypercapnic coma in frail patients with end-stage chronic respiratory failure and do-not-intubate orders remains a questionable issue given the poor outcome of this vulnerable population. We aimed to answer this issue by assessing not only subjects' outcome with NIV but also subjects' point of view regarding NIV for this indication.
METHODS: A prospective observational case-control study was conducted in 3 French tertiary care hospitals during a 2-y period. Forty-three individuals who were comatose (with pH < 7.25 and PaCO2 > 100 mm Hg at admission) were compared with 43 subjects who were not comatose and who were treated with NIV for acute hypercapnic respiratory failure. NIV was applied by using the same protocol in both groups. They all had a do-not-intubate order and were considered vulnerable individuals with end-stage chronic respiratory failure according to well-validated scores.
RESULTS: NIV yielded similar outcomes in the 2 groups regarding in-hospital mortality (n = 12 [28%] vs n = 12 [28%] in the noncomatose controls, P > .99) and 6-month survival (n = 28 [65%] vs n = 22 [51%] in the noncomatose controls, P = .31). Despite poor quality of life scores (21.5 ± 10 vs 31 ± 6 in the awakened controls, P = .056) as assessed by using the VQ11 questionnaire 6 months to 1 y after hospital discharge, a large majority of the survivors (n = 23 [85%]) would be willing to receive NIV again if a new episode of acute hypercapnic respiratory failure occurs.
CONCLUSION: In the frailest subjects with supposed end-stage chronic respiratory failure that justifies treatment limitation decisions, it is worth trying NIV when acute hypercapnic respiratory failure occurs, even in the case of extreme respiratory acidosis with hypercapnic coma at admission.
INTRODUCTION: Myocardial infarction (MI) remains a leading cause of mortality. Palliative care (PC) has recently expanded in scope to include noncancer-related conditions. There is little data available regarding the use of PC in critical MI patients.
METHODS: We used discharge data from the National Inpatient Sample for the years 2012 to 2014. We examined discharges with a primary diagnosis of MI. We measured the rate of PC referral, trend in utilization during the study period and possible predictors of PC utilization.
RESULTS: Among 1 667 520 discharges of those patients =18 years of age and with a primary diagnosis of MI, use of PC was seen in 2.5% of all patients and in 24% of patients who died. In a multivariable logistic regression, we found the presence of cancer, cardiogenic shock, dementia, stroke, hemiplegia, the use of circulatory support, and mechanical ventilation were associated with higher likelihood of PC referral. Palliative care referral increased during the study period, odds ratio of 1.18 per year (95% confidence interval: 1.14-1.21; P value <.001). Palliative care was not associated with prolonged length of stay.
CONCLUSION: Several comorbidities were associated with the use of PC, most notably the use of mechanical ventilation and the presence of metastatic cancer. There was a trend of increasing use of PC during the study period.
Few data are available regarding treatment outcomes in lung cancer patients with metastasis who initiated mechanical ventilation in the emergency department (ED). We aimed to evaluate 28-day mortality in lung cancer patients with metastasis who initiated mechanical ventilation in the ED. Patients with solid malignancy who initiated mechanical ventilation in the ED of a tertiary hospital were retrospectively identified and stratified into four groups according to the presence of lung cancer and metastasis. Among 212 included patients, the mortality rates by the 28th hospital day were as follows: 44.2% (19/43) in non-lung cancer patients without metastasis, 63.2% (43/68) in non-lung cancer patients with metastasis, 52.4% (11/21) in lung cancer patients without metastasis, and 66.2% (53/80) in lung cancer patients with metastasis. In multivariable analysis, lung cancer patients with metastasis had significantly higher odds ratio for 28-day mortality than non-lung cancer patients without metastasis (adjusted odds ratio [OR] = 7.17, 95% confidence interval [CI] = 2.14–24.01). Sepsis-related respiratory failure (adjusted OR = 2.60, 95% CI = 1.16–5.84) and cardiopulmonary resuscitation (adjusted OR = 13.34, 95% CI = 4.45–39.95) over respiratory failure without sepsis and acute organ dysfunction process measured by sequential organ failure assessment (SOFA) score (adjusted OR = 1.15, 95% CI = 1.05–12.6) were independently associated with an increase in mortality rate. In conclusion, the treatment outcomes in lung cancer patients with metastasis who initiated mechanical ventilation in the ED were poor. Aggressive resuscitation versus end-of-life care in advance of an unexpected medical crisis should be considered in lung cancer patients with metastasis via a multidisciplinary approach with a consideration of underlying comorbid illnesses in the acute organ dysfunction processes.
BACKGROUND: Little is known about the patterns of end-of-life (EOL) health care for older Mexican-Americans with or without a diagnosis of Alzheimer's disease and related dementias (ADRD). Our objective was to investigate the frequency of acute hospital admissions, intensive care unit (ICU) use, and ventilator use during the last 30-days of life for deceased older Mexican-American Medicare Beneficiaries with and without an ADRD diagnosis.
METHODS: We used Medicare claims data linked with survey information from 1,090 participants (mean age of death 85.1 years) of the Hispanic EPESE. Multivariable logistic regression models were used to estimate the odds for hospitalization, ICU use, and ventilator use in the last 30-days of life for decedents with ADRD compared to those without ADRD. Generalized linear models were used to estimate risk ratio for length of hospital stay (LOS).
RESULTS: Within the last 30-days of life, 64.5% of decedents had an acute hospitalization (59.1% ADRD, 68.3% no ADRD), 33.9% had an ICU stay (31.3% ADRD, 35.8% no ADRD), and 17.2% used a ventilator (14.9% ADRD, 18.8% no ADRD). ADRD was associated with significantly lower hospitalizations (OR=0.67, 95% CI=0.50-0.89) and shorter LOS (RR=0.77, 95% CI=0.65-0.90).
CONCLUSION: Hospitalization, ICU stay, and ventilator use are common at the end of life for older Mexican-Americans. The lower hospitalization and shorter LOS of decedents with ADRD indicate a modest reduction in acute care use. Future research should investigate the impact of EOL planning on acute-care use and quality of life in terminally ill Mexican-American older adults.
Education and recognition of death anxiety are important for respiratory therapists. A vital component of respiratory therapy is managing mechanical ventilation and dealing with death and dying. For most institutions, respiratory therapy is a vital component of the rapid response team, code team, and trauma team. Removal of mechanical ventilation is a duty primarily bestowed upon the respiratory therapist. Exposure to death, on a frequent basis, can take an emotional toll and lead to burnout, stress, and increased turnover. Managers and leaders in the hospital must make efforts to provide counseling and education to support respiratory therapists and their ongoing exposure to death and dying. This paper examines coping mechanisms for physicians and paramedics, resulting in tools that can be used to provide support to the respiratory therapist.
OBJECTIVES: An increasing number of patients with motor neuron disease (MND) in the UK and Ireland use assisted ventilation, and a small proportion of these use long-term tracheostomy ventilation (TV).1 2 NICE guidelines recommend that patients with MND should routinely receive specialist palliative care input. The aim was to establish the extent to which hospices and specialist palliative care units (SPCUs) in the UK and Ireland currently manage patients with MND using assisted ventilation especially TV and to identify any associated barriers.
METHODS: A 25-item questionnaire was developed in Survey Monkey. A link to the questionnaire was emailed to every medical director (n=185) of inpatient hospices/SPCUs in the UK and Ireland.
RESULTS: The response rate was 42.4% (n=78). 97.4% of units admit patients with MND on non-invasive ventilation (NIV), but only 28.2% admit those using TV. 80.8% of units have adequate expertise in the management of NIV, compared with 7.7% for managing TV. 35.9% and 2.6% of units have a policy for managing patients using NIV and TV, respectively. 14.1% respondents had been involved in the care of patients with MND using TV, in the specialist palliative care setting in the last 5 years.
CONCLUSIONS: A minority of UK and Irish hospices/SPUs provide support to TV MND patients and few units currently have management or admission policies for this cohort of patients. Respondents indicated a lack of appropriate expertise and experience. Further exploration of these barriers is required to establish how to optimise care for TV MND patients in this setting.
There are mainly two types of needs for the ventilator users with severe neurological diseases: respiratory related needs include mode of ventilation selection, mode of ventilator prescription, maintaining lung recruitment and good airway clearance; non-respiratory related needs include substantial nursing care, adequate nutrition, accessible communication and psychological support. All these are important to maintain the quality of life of these patients.
INTRODUCTION: Non-invasive ventilation(NIV) is commonly used to manage acute respiratory failure due to decompensated cardiorespiratory disease. We describe symptom burden in this population.
METHODS: Fifty, consecutive, consenting, English speaking, cognitively intact patients, admitted to wards other than the intensive care unit (ICU) in a tertiary teaching hospital and treated with NIV for hypercapnic respiratory failure, were recruited. The 14-item Condensed Memorial Symptom Assessment Scale was used to assess physical and psychological symptoms within 36 hours of commencing NIV. Breathlessness (using Borg score), pain location and intensity using a numerical rating scale, and four symptoms potentially prevalent in patients undergoing NIV (cough, sputum, gastric bloating and dry eyes) were also assessed.
RESULTS: Patients reported a median of 10 symptoms (IQR 9-13). A median of 5 symptoms (IQR 3-7) were rated as severe. Breathlessness was the most prevalent and most distressing symptom, with participants reporting a mean maximum Borg score of 7.55 over the 24 hours prior to admission. Dry mouth, lack of energy, cough, sputum, difficulty sleeping and psychological symptoms were prevalent. Pain, when reported, was of moderate intensity and contributed to distress.
CONCLUSIONS: This study describes the patient-reported symptoms occurring during an episode of acute respiratory failure. Understanding the symptom profile of patients in this setting may allow clinicians to target symptom relief while simultaneously managing respiratory failure, enhancing care.
The intensive care unit (ICU) and hospice inpatient unit (IPU) environments differ in many ways. Although both endeavor to provide the best care possible for their patients, the day-to-day goals of these environments are almost antithetical. Similarly, the experiences and expertise of the staff differ. When performing a similar clinical task, it may be addressed in different ways because each group is engrained in their primary day-to-day focus. Terminal withdrawal of mechanical ventilation is a procedure that is performed in both ICUs and some hospice IPUs. Previous examinations of this subject have been based largely upon the correlative background, practices, and perceptions of the ICU prescriber. The purpose of this review is to examine how the manner in which this procedure is performed in the hospice environment may differ in ways that the intensivist can incorporate into their own plan of care, or better appreciate when making the decision to remove mechanical ventilation in the critical care unit or transfer the patient to a hospice environment for the procedure to be completed.
An audit of ten years' experience in all patients undergoing withdrawal of cardiorespiratory support (WCRS) in the context of donation after circulatory death (DCD) was conducted in Queensland, Australia (2008 to 2017). One hundred and seventy-one patients proceeded to donation after declaration of death by circulatory criteria with loss of pulsatile arterial blood pressure (circulatory arrest) for five minutes. The demographics, times and haemodynamic observations were abstracted, de-identified and collated. The average age of patients was 43 years (standard deviation 16.1 years) and 63% were male. The median and mean times to an agonal systolic blood pressure below 50 mmHg were 10 and 11 minutes and the median and mean times from WCRS to circulatory arrest were 14 and 16 minutes. After systolic blood pressure fell to 50 mmHg or lower, 33 patients (19.3%) had spontaneous return of systolic pressure to above 50 mmHg. Following periods of circulatory arrest, five patients were documented to have spontaneous return of pulsatile arterial pressure. Two patients had return of circulation after two minutes, but less than five minutes of circulatory arrest and three patients had return of circulation where circulatory arrest had been documented for less than two minutes. Following WCRS, transient restoration of circulation following circulatory arrest may occur, even following two minutes of circulatory asystole, albeit rarely.
OBJECTIVE: To determine whether code status, advance directives, and decisions to limit life support were different for patients with limited English proficiency (LEP) in the intensive care unit (ICU) as compared with patients whose primary language was English.
PATIENTS AND METHODS: We conducted a retrospective cohort study in adult patients admitted to 7 ICUs in a single tertiary academic medical center from May 31, 2011, through June 1, 2014.
RESULTS: Of the 27,523 patients admitted to the ICU, 779 (2.8%) had LEP. When adjusted for severity of illness, sex, education level, and insurance status, patients with LEP were less likely to change their code status from full code to do not resuscitate during ICU admission (odds ratio [OR], 0.62; 95% CI, 0.46-0.82; P<.001) and took 3.8 days (95% CI, 1.9-5.6 days; P<.001) longer to change to do not resuscitate. Patients with LEP who died in the ICU were less likely to receive a comfort measures order set (OR, 0.38; 95% CI, 0.16-0.91; P=.03) and took 19.1 days (95% CI, 13.2-25.1 days; P<.001) longer to transition to comfort measures only. Patients with LEP were less likely to have an advance directive (OR, 0.23; 95% CI, 0.18-0.29; P<.001), more likely to receive mechanical ventilation (OR, 1.26; 95% CI, 1.07-1.48; P=.005), and more likely to have restraints used (OR, 1.36; 95% CI, 1.11-1.65; P=.003). The hospital length of stay was 2.7 days longer for patients with LEP. Additional adjustment for religion, race, and age yielded similar results.
CONCLUSION: There are important differences in end-of-life care and decision making for patients with LEP.
Nevaeh's* swollen, septic body shone like a stone – the dome of her abdomen turgid, her obsidian skin smooth and clammy. At 10 months of age, she was already a chronically ill child who breathed and was fed through tubes, and that day, the unremitting river of illness finally eroded her. Within minutes of our initial assessment in the emergency department, she vomited a thick, tarry sediment of blood, the stress of which stopped her burdened heart.
Chronic fibrotic interstitial lung disease (ILD) forms a substantial proportion of disabling lung diseases and leads to significant morbidity and mortality. The mortality of these patients when admitted to the Intensive Care Unit with acute respiratory worsening requiring mechanical ventilation can reach up to 90%. Indian law does not allow the physician to make the final decision about mechanical ventilation, we are forced to follow the wishes of the family despite knowing the extremely poor outcome of aggressive intervention and invasive ventilation. Patients more often become ventilator dependent and do not gain much regarding the quality of life with mechanical ventilation. Hence, there is a desperate need for palliative support for these patients with advance care planning to reduce the suffering of these patients toward the end of life. The article describes various methods by which the decision making process of mechanical ventilation could be made simpler and acceptable to the patient and the families of fibrotic Interstitial lung disease patients and also the dilemma faced by chest physician in India with virtually no prior end of life planning and no clear guidelines on ventilation when it comes to palliation of patients with advanced ILD.
BACKGROUND: Although racial/ethnic minorities receive more intense, nonbeneficial healthcare at the end of life, the role of race/ethnicity independent of other social determinants of health is not well understood.
OBJECTIVES: Examine the association between race/ethnicity, other key social determinants of health, and healthcare intensity in the last 30 days of life for those with chronic, life-limiting illness.
SUBJECTS: We identified 22,068 decedents with chronic illness cared for at a single healthcare system in Washington State who died between 2010 and 2015 and linked electronic health records to death certificate data.
DESIGN: Binomial regression models were used to test associations of healthcare intensity with race/ethnicity, insurance status, education, and median income by zip code. Path analyses tested direct and indirect effects of race/ethnicity with insurance, education, and median income by zip code used as mediators.
MEASUREMENTS: We examined three measures of healthcare intensity: (1) intensive care unit admission, (2) use of mechanical ventilation, and (3) receipt of cardiopulmonary resuscitation.
RESULTS: Minority race/ethnicity, lower income and educational attainment, and Medicaid and military insurance were associated with higher intensity care. Socioeconomic disadvantage accounted for some of the higher intensity in racial/ethnic minorities, but most of the effects were direct effects of race/ethnicity.
CONCLUSIONS: The effects of minority race/ethnicity on healthcare intensity at the end of life are only partly mediated by other social determinants of health. Future interventions should address the factors driving both direct and indirect effects of race/ethnicity on healthcare intensity.
AIMS AND OBJECTIVES: To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom.
BACKGROUND: In recent years, increasing numbers of children-dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable.
DESIGN: This was a qualitative study using an inductive, semantic analytic approach within a realist epistemology.
METHODS: Data collection was carried out in 2013. Interviews took place with parents (n = 5) and focus groups with professionals (n = 26) who had experience of step-down care.
RESULTS: Multiple benefits of step-down in the hospice were clear. Both sets of accounts suggested that for children and families life was "on hold" in hospital. Hospice was considered a home-like environment where the child and family could "live again". Parents reflected that, in hospice they were "living, not existing" while professionals highlighted hospice as nurturing and empowering the whole family, promoting the child's development while safely meeting their clinical needs.
CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: The study highlights a number of crucial benefits to the child and family both in the immediate and longer terms. The collective perspectives therefore endorse hospice as a potential viable choice for these children and their families during the always difficult, usually protracted transition from hospital to home.
BACKGROUND: Non-invasive ventilation (NIV) improves quality of life and survival in patients with amyotrophic lateral sclerosis (ALS) and respiratory symptoms. Little is known about the patterns of NIV use over time and the impact of NIV on end-of-life decision-making in ALS.
OBJECTIVE: This study assessed the pattern of NIV use over the course of the disease and the timing of end-of-life discussions in people living with ALS.
METHOD: A retrospective single-center cohort study was performed at London Health Sciences Centre. Daily NIV duration of use was evaluated at 3-month intervals. The timing of diagnosis, NIV initiation, discussions relating to do-not-attempt-resuscitation (DNAR) and death were examined.
RESULTS: In total, 48 patients were included in the analysis. Duration of NIV use increased over time, and tolerance to NIV was observed to be better than expected in patients with bulbar-onset ALS. There was a high degree of variability in the timing of end-of-life discussions in patients with ALS (356±451 days from diagnosis). In this cohort, there was a strong association between the timing of discussions regarding code status and establishment of a DNAR order (r2=0.93).
CONCLUSION: This retrospective cohort study suggests that the use of NIV in ALS increases over time and that there remains a great deal of variability in the timing of end-of-life discussions in people living with ALS. Future prospective studies exploring the use NIV over the disease trajectory and how NIV affects end-of-life decision-making in people with ALS are needed.
BACKGROUND: Dying is ubiquitous, yet the optimal management of hydration in the terminal phase is undetermined. Palliative care (PC) doctors' practices may act as a de facto measure of the benefits and burdens of artificial hydration (AH) use.
OBJECTIVE: To identify PC doctors' AH prescribing practices for imminently dying patients and possible influencing factors.
METHODS: An online survey of doctors belonging to the Australian and New Zealand Society of Palliative Medicine.
RESULTS: One hundred and thirty-six surveys were completed (30% response rate). AH use for patients in the prognosticated last week of life was low: 77% of respondents prescribed AH to 0-10% of patients and 3% of respondents prescribed to more than 20%. The most common reason for prescribing AH was palliation of family/patient concern rather than a physical symptom. The majority thought there was no effect of AH on survival, or on symptoms of fatigue (90%), reduced level of consciousness (88%), agitation (75%), nausea (69%), vomiting (68%), myoclonus (66%), thirst (65%), delirium (62%), cough (57%), or bowel obstruction (50%). AH was thought to worsen subcutaneous edema (94%), upper respiratory tract secretions (85%), ascites (73%), physical discomfort (72%), dyspnea (62%), and urinary symptoms (57%).
CONCLUSION: PC doctors from Australia and New Zealand reported lower use of AH for dying patients compared to international counterparts. The study showed high concordance in respondents' opinions: most thought AH was unlikely to provide clinical benefit and might cause harm. Further studies are needed to determine best practice of AH use at the end of life.
OBJECTIVES: Patients requiring mechanical ventilation have high morbidity and mortality. Providing palliative care services has been suggested as a way to improve comprehensive management of critically ill patients. We examined the trend in the utilization of palliative care among adults who require prolonged mechanical ventilation. Primary objectives were to determine the trend in palliative care utilization over time, predictors for palliative care utilization, and palliative care impact on hospital length of stay.
DESIGN: Retrospective, cross-sectional study.
SETTING: The National Inpatient Sample data between 2009 and 2013 was used for this study.
PATIENTS: Adults (age = 18 yr) who underwent prolonged mechanical ventilation (= 96 consecutive hr) were studied.
MEASUREMENTS AND MAIN RESULTS: Palliative care and mechanical ventilation were identified using the corresponding International Classification of Diseases, 9th revision, Clinical Modification, codes. A total of 1,751,870 hospitalizations with prolonged mechanical ventilation were identified between 2009 and 2013. The utilization of palliative care increased yearly from 6.5% in 2009 to 13.1% in 2013 (p < 0.001). Among the mechanically ventilated patients who died, palliative care increased from 15.9% in 2009 to 33.3% in 2013 (p < 0.001). Median hospital length of stay for patients with and without palliative care was 13 and 17 days, respectively (p < 0.001). Patients discharged to either short- or long-term care facilities had a shorter length of stay if palliative care was provided (15 vs 19 d; p < 0.001). The factors associated with a higher palliative care utilization included older age, malignancy, larger hospitals in urban areas, and teaching hospitals. Non-Caucasian race was associated with lower palliative care utilization.
CONCLUSIONS: Among patients who undergo prolonged mechanical ventilation, palliative care utilization is increasing, particularly in patients who die during hospitalization. Using palliative care for mechanically ventilated patients who are discharged to either short- or long-term care facilities is associated with a shorter hospital length of stay.
BACKGROUND: Health-related quality of life (HRQL), life satisfaction, living conditions, patients' attitudes towards life and death, expectations, beliefs and unmet needs are all poorly understood aspects associated with patients receiving invasive home mechanical ventilation (HMV) following ICU treatment and unsuccessful weaning. Therefore, the present study aimed to assess (1) HRQL, (2) life satisfaction and (3) patients' perspectives on life and death associated with invasive HMV as the consequence of unsuccessful weaning.
RESULTS: Patients undergoing invasive HMV with full technical supply and maximal patient care were screened over a 1-year period and assessed in their home environment. The study comprised the following: (1) detailed information on specific aspects of daily life, (2) self-evaluation of 23 specific daily life aspects, (3) HRQL assessment using the Severe Respiratory Insufficiency Questionnaire, (4) open interviews about the patient's living situation, HRQL, unsolved problems, treatment options, dying and the concept of an afterlife. Out of 112 patients admitted to a specialized weaning centre, 50 were discharged with invasive HMV and 25 out of these (14 COPD and 11 neuromuscular patients) were ultimately enrolled. HRQL and life satisfaction were severely impaired, despite maximal patient care and full supply of technical aids. The most important areas of dissatisfaction identified were mobility, communication, social contact and care dependency. Importantly, 32% of patients would have elected to die in hindsight rather than receive invasive HMV.
CONCLUSIONS: Despite maximal patient care and a full supply of technical aids, both HRQL and life satisfaction are severely impaired in many invasive HMV patients who have failed prolonged weaning. These findings raise ethical concerns about the use of long-term invasive HMV following unsuccessful weaning.