Joan M. Teno

Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel

CONTEXTnDespite increasing interest in advance care planning (ACP) and previous ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives.nnnOBJECTIVEnThe aim of this study was to develop a consensus definition of ACP for adults.nnnMETHODSnWe convened a Delphi panel of multidisciplinary, international ACP experts consisting of 52 clinicians, researchers, and policy leaders from four countries and a patient/surrogate advisory committee. We conducted 10 rounds using a modified Delphi method and qualitatively analyzed panelists input. Panelists identified several themes lacking consensus and iteratively discussed and developed a final consensus definition.nnnRESULTSnPanelists identified several tensions concerning ACP concepts such as whether the definition should focus on conversations vs. written advance directives; patients values vs. treatment preferences; current shared decision making vs. future medical decisions; and who should be included in the process. The panel achieved a final consensus one-sentence definition and accompanying goals statement: Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness. The panel also described strategies to best support adults in ACP.nnnCONCLUSIONSnA multidisciplinary Delphi panel developed a consensus definition for ACP for adults that can be used to inform implementation and measurement of ACP clinical, research, and policy initiatives.

International study of the place of death of people with cancer: a population-level comparison of 14 countries across 4 continents using death certificate data

Background:Where people die can influence a number of indicators of the quality of dying. We aimed to describe the place of death of people with cancer and its associations with clinical, socio-demographic and healthcare supply characteristics in 14 countries.Methods:Cross-sectional study using death certificate data for all deaths from cancer (ICD-10 codes C00-C97) in 2008 in Belgium, Canada, Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (2010), USA (2007) and Wales (N=1u2009355u2009910). Multivariable logistic regression analyses evaluated factors associated with home death within countries and differences across countries.Results:Between 12% (South Korea) and 57% (Mexico) of cancer deaths occurred at home; between 26% (Netherlands, New Zealand) and 87% (South Korea) occurred in hospital. The large between-country differences in home or hospital deaths were partly explained by differences in availability of hospital- and long-term care beds and general practitioners. Haematologic rather than solid cancer (odds ratios (ORs) 1.29–3.17) and being married rather than divorced (ORs 1.17–2.54) were most consistently associated with home death across countries.Conclusions:A large country variation in the place of death can partly be explained by countries’ healthcare resources. Country-specific choices regarding the organisation of end-of-life cancer care likely explain an additional part. These findings indicate the further challenge to evaluate how different specific policies can influence place of death patterns.

International Variation in Place of Death of Older People Who Died From Dementia in 14 European and non-European Countries

OBJECTIVESnThe objective of this study was to examine variation in place of death of older people dying from dementia in countries across 4 continents.nnnDESIGNnStudy of death certificate data.nnnMETHODSnWe included deaths of older (65 + years) people whose underlying cause of death was a dementia-related disease (ICD-10: F01, F02, F03, G30) in Belgium, the Netherlands, England, Wales, France, Italy, Spain, Czech Republic, Hungary, New Zealand, United States, Canada, Mexico and South Korea. We examined associations between place of death and sociodemographic factors, social support, and residential and health care system factors.nnnRESULTSnOverall, 4.8% of all deaths were from a dementia-related disease, ranging from 0.4% in Mexico to 6.9% in Canada. Of those deaths, the proportion occurring in hospital varied from 1.6% in the Netherlands to 73.6% in South Korea. When controlling for potential confounders, hospital death was more likely for men, those younger than 80, and those married or living in a region with a higher availability of long-term care beds, although this could not be concluded for each country. Hospital death was least likely in the Netherlands compared with other countries.nnnCONCLUSIONSnPlace of death of older people who died from a dementia-related disease differs substantially between countries, which might point to organizational differences in end-of-life care provision. Increasing the availability of long-term care beds might be important to reduce the number of hospital deaths, while focusing specialized end-of-life care services on married people or those aged 65 to 79 might be crucial for achieving home death. However, proper end-of-life care needs to be ensured in hospitals, should this be the most appropriate end-of-life care setting.

Tube Feeding in US Nursing Home Residents With Advanced Dementia, 2000-2014

Tube Feeding in US Nursing Home Residents With Advanced Dementia, 2000-2014 Over the last 2 decades, research has failed to demonstrate benefits of tube feeding in patients with advanced dementia.1,2 Expert opinion and position statements by national organizations increasingly advocate against this practice.3 This study was conducted to describe feeding tube insertion rates from 2000-2014 among US nursing home residents with advanced dementia. Racial disparities were examined because black race has been strongly associated with greater feeding tube use.4

Estimating the need for palliative care at the population level: A cross-national study in 12 countries

Background: To implement the appropriate services and develop adequate interventions, detailed estimates of the needs for palliative care in the population are needed. Aim: To estimate the proportion of decedents potentially in need of palliative care across 12 European and non-European countries. Design: This is a cross-sectional study using death certificate data. Setting/participants: All adults (⩾18u2009years) who died in 2008 in Belgium, Czech Republic, France, Hungary, Italy, Spain (Andalusia, 2010), Sweden, Canada, the United States (2007), Korea, Mexico, and New Zealand (Nu2009=u20094,908,114). Underlying causes of death were used to apply three estimation methods developed by Rosenwax et al., the French National Observatory on End-of-Life Care, and Murtagh et al., respectively. Results: The proportion of individuals who died from diseases that indicate palliative care needs at the end of life ranged from 38% to 74%. We found important cross-country variation: the population potentially in need of palliative care was lower in Mexico (24%–58%) than in the United States (41%–76%) and varied from 31%–83% in Hungary to 42%–79% in Spain. Irrespective of the estimation methods, female sex and higher age were independently associated with the likelihood of being in need of palliative care near the end of life. Home and nursing home were the two places of deaths with the highest prevalence of palliative care needs. Conclusion: These estimations of the size of the population potentially in need of palliative care provide robust indications of the challenge countries are facing if they want to seriously address palliative care needs at the population level.

Association of Increasing Use of Mechanical Ventilation Among Nursing Home Residents With Advanced Dementia and Intensive Care Unit Beds

ImportancenMechanical ventilation may be lifesaving, but in certain persons, such as those with advanced dementia, it may prolong patient suffering without a clear survival benefit.nnnObjectivenTo describe the use and outcomes of mechanical ventilation and its association with the increasing numbers of intensive care unit (ICU) beds in the United States for patients with advanced dementia residing in a nursing home 120 days before that hospital admission.nnnDesign, Setting, and ParticipantsnThis retrospective cohort study evaluated Medicare beneficiaries with advanced dementia hospitalized from January 1, 2000, to December 31, 2013, using the Minimum Data Set assessments linked with Medicare part A claims. A hospital fixed-effect, multivariable logistic regression model examined the effect of changes in ICU beds within individual hospitals and the likelihood of receiving mechanical ventilation, controlling for patients demographic characteristics, function, and comorbidities.nnnMain Outcomes and MeasuresnMechanical ventilation.nnnResultsnFrom 2000 to 2013, a total of 635u202f008 hospitalizations of 380u202f060 eligible patients occurred (30.5% male and 69.5% female; mean [SD] age, 84.4 [7.4] years). Use of mechanical ventilation increased from 39 per 1000 hospitalizations in 2000 to 78 per 1000 hospitalizations in 2013 (Pu2009<u2009.001, test of linear trend). As the number of ICU beds in a hospital increased over time, patients with advanced dementia were more likely to receive mechanical ventilation (ie, adjusted odds ratio per 10 ICU bed increase, 1.06; 95% CI, 1.05-1.07). In 2013, hospitals in the top decile in the number of ICU beds were reimbursed

Examining Variation in Hospice Visits by Professional Staff in the Last 2 Days of Life

9611.89 per hospitalization compared with

Place of death of people living with Parkinson’s disease: a population-level study in 11 countries

8050.24 per hospitalization in the lower decile (Pu2009<u2009.001) without an improvement in 1-year mortality (65.2% vs 64.6%; Pu2009=u200954).nnnConclusions and RelevancenAmong hospitalized nursing home residents with advanced dementia, we found an increase in the use of mechanical ventilation over time without substantial improvement in survival. This increase in the use of mechanical ventilation was associated with an increase in the number of ICU beds within a hospital.

Using routine data to improve palliative and end of life care

IMPORTANCEnIn the final days of life, symptoms are exacerbated and often families need both education and emotional support from hospice professional staff. The Medicare Hospice Benefit provides a per-diem payment with no requirements on the frequency of patient visits.nnnOBJECTIVEnTo examine individual characteristics, hospice program, and geographic variation in hospice visits by professional staff during the last 2 days of life.nnnDESIGN, SETTING, AND PARTICIPANTSnThis retrospective cohort study of 661 557 Medicare hospice beneficiaries included all patients who died in federal fiscal year 2014 (October 1, 2013-September 30, 2014) in hospice services while receiving routine home care in the last 2 days of life. Data analysis was conducted from March 9 to August 25, 2015.nnnMAIN OUTCOMES AND MEASURESnMedicare regulations require that hospice care centers report daily the frequency and duration of patient visits by professional staff, as well as the type of hospice staff who conduct these visits. We examined visit variation by hospice professional staff (physician, nursing staff, and social worker) during the last 2 days of life using a multivariable logistic model adjusting for decedent and hospice program characteristics.nnnRESULTSnOf the 661 557 patients in the study, 81 478 (12.3%) received no professional staff visits in the last 2 days of life. State variation ranged from 590 of 15 399 patients (3.8%) in Wisconsin to 97 of 492 patients (19.7%) in Alaska, and hospice program interquartile variation ranged from 3.2% (25th percentile) to 19.5% (75th percentile). Black patients were less likely to have any visits than were white patients (7352 of 48 221 [15.2%] vs 70 365 of 585 377 [12.0%]; adjusted odds ratio, 1.30; 95% CI, 1.24-1.37). Those dying in a nursing home were 1.74 times less likely to have any visits than those dying at home (30 880 of 186 649 [16.5%] vs 40 973 of 386 654 [10.6%]; 95% CI, 1.62-1.88). Those dying on a Sunday were 3.35 times less likely to have a visit compared with persons dying on a Tuesday (19 519 of 95 979 [20.3%] vs 6784 of 92 127 [7.4%]; 95% CI, 3.17-3.55).nnnCONCLUSIONS AND RELEVANCEnHospice visits in the last 2 days of life by professional staff vary by race, hospice program, and geographic region of the country. Visits were less likely when the Medicare beneficiary was black, dying on a Sunday, and receiving care in a nursing home.

Differences in place of death between lung cancer and COPD patients: a 14-country study using death certificate data

BackgroundMost people prefer to receive end-of-life care in familiar surroundings rather than in hospital. This study examines variation in place of death for people dying from Parkinson’s disease (PD) across 11 European and non-European countries.MethodsUsing death certificate data of 2008 for Belgium, France, Italy, Hungary, Czech Republic, New Zealand, USA, Canada, Mexico, South Korea and Spain for all deaths with PD as an underlying cause (ICD-10 code: G20) cross-national differences in place of death were examined. Associations between place of death and patient socio-demographic and regional characteristics were evaluated using multivariable binary logistic regression analyses.ResultsThe proportion of deaths in hospital ranged from 17% in the USA to 75% in South Korea. Hospital was the most prevalent place of death in France (40%), Hungary (60%) and South Korea; nursing home in New Zealand (71%), Belgium (52%), USA (50%), Canada (48%) and Czech Republic (44%); home in Mexico (73%), Italy (51%) and Spain (46%). The chances of dying in hospital were consistently higher for men (Belgium, France, Italy, USA, Canada), those younger than 80xa0years (Belgium, France, Italy, USA, Mexico), and those living in areas with a higher provision of hospital beds (Italy, USA).ConclusionsIn several countries a substantial proportion of deaths from PD occurs in hospitals, although this may not be the most optimal place of terminal care and death. The wide variation between countries in the proportion of deaths from PD occurring in hospital indicates a potential for many countries to reduce these proportions.