The Canadian Researchers at the End of Life Network (CARENET) is a group of health care professionals from across the country that collaborate with each other to understand and improve palliative and end-of-life care.

With over half of expected deaths occurring in acute hospitals, and a workforce not trained to care for them, good quality end-of-life care in these settings is hard to achieve. The National Consensus Statement on Essential Elements for Safe and High-Quality End-of-Life Care has been translated into e-learning modules by the End of Life Essentials project, and this study aims to demonstrate how clinicians interpret the Consensus Statement in their day-to-day practice by answering the question at the end of each module: ‘Tomorrow, the one thing I can change to more appropriately provide end-of-life care is…’ 

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 LGBT (lesbian, gay, bisexual, and transgender) older adults are more likely than their heterosexual peers to age with limited support in stigmatizing environments often poorly served by traditional social services challenging their preparedness for end of life. Fourteen focus groups and three individual interviews were conducted in five Canadian cities with gay/bisexual men (5 groups; 40 participants), lesbian/bisexual women (5 groups; 29 participants), and transgender persons (3 interviews, 4 groups; 24 participants). Four superordinate themes were identified: (a) motivators and obstacles, (b) relationship concerns, (c) dynamics of LGBT culture and lives, and (d) institutional concerns. Several pressing issues emerged including depression and isolation (more common among gay and bisexual men), financial/class issues (lesbian and bisexual women), and uncomfortable interactions with health-care providers (transgender participants). These findings highlight the challenges and complexities in end-of-life preparation within LGBT communities.

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Bob Hall was recovering from yet another surgery in March 2014 when a volunteer walked into his hospital room. It had been a rocky recovery since his lung transplant three months earlier at the William S. Middleton Memorial Veterans Hospital in Madison, Wis. The volunteer wasn’t there to check on his lungs or breathing. Instead, she asked Hall if he wanted to tell his life story. 

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“Maggie would have wanted everything done. She didn’t want to die.”

I’m sitting beside *Maggie’s hospital bed, speaking to her sister, her only surviving next of kin and substitute decision maker. I have known Maggie for over six months. When she was first referred to see me, she was a dynamic 45-year-old woman who had just been diagnosed with metastatic pancreatic cancer.

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LGBTQ advocates fought discrimination to celebrate PRIDE. In their old age, that lingering fear is affecting their health.

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Complication rates are high among the oldest patients. Now a surgeons’ group will propose standards for hospitals operating on the elderly.

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Spain has one of the world’s highest life expectancies, and its rapidly ageing population is putting the health system under strain. Improvement of quality of care for elderly people is an imperative to improve outcomes and reduce costs.

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Use of intensive care unit (ICU) resources in the USA outpaces that of other countries. This increased use is not accompanied by superior clinical outcomes and is at times discordant with patient preferences.

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Little is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories. The aim of this study was to compare symptoms before death in LTC for those with cancer, dementia or chronic illness.

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We recognise that critical care is sometimes provided in situations that are unwanted, non-beneficial, or unsustainably resource intense. In this issue of The Lancet Respiratory Medicine, a Series of three articles 1, 2, 3 review the published literature on avoiding unwanted intensive care unit (ICU) care, and identify the drivers of non-beneficial or cost-ineffective ICU use. Although to stop doing something that is unwanted, ineffective, and expensive should be easy, previous attempts to reduce the use of critical care in these situations have not always been met with success. Observational studies have routinely shown that advance care planning documents and palliative care consultation are associated with low rates of ICU use near the end of life. However, prospective interventional studies of palliative care or advance care planning have shown small to modest effects at best, and some have shown concerning negative effects on family members, such as increased rates of post-traumatic stress disorder. Moreover, the resources required to deliver some of these interventions are substantial, and might be hard to justify on the basis of the resources they save or the outcomes that they achieve. The efforts to reduce unwanted, non-beneficial, or unsustainable critical care can themselves be unwanted, non-beneficial, or unsustainable. 

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My colleagues often ask me: “Why are Chinese patients so resistant to hospice and palliative care?” “Why are they so unrealistic?” “Don’t they understand that death is part of life?” “Is it true that with Chinese patients you cannot discuss advance directives?”

As a Chinese speaking geriatrician and palliative care physician practicing in Flushing, NY, I have cared for countless Chinese patients with serious illnesses or at end of life. Invariably, when Chinese patients or families see me, they ask me if I speak Chinese. When I reply “I do” in Mandarin, the relief and instant trust I see on their faces make my day meaningful and worthwhile.

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 For a generation of LGBTQ+ people who lived through unprecedented social change, getting older poses new challenges. When it comes to seeking elder care, concerns about lack of services, discrimination, neglect and even abuse threaten to reverse recent progress.

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Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients. 

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Shoppers in south London were disoriented this month by the arrival of an airport departure lounge in the middle of a popular shopping centre. An often used metaphor for the end of life, the pop-up Departure Lounge in Lewisham was designed to encourage passersby to examine what it means to have a “good death.” 

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 Nearly three quarters of GPs have too little time to discuss end of life care with patients - and only just over half feel comfortable doing so, a poll reveals.

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Canadians deserve to live out their lives in comfort and with dignity. They should also have access to care that is appropriate to their needs and that respects their wishes. For this reason, palliative care is a key priority in the Government of Canada's ongoing efforts to improve our health care system.

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With the burgeoning numbers of older people and the strong linkage between aging and Alzheimer’s disease and other dementias, almost all health systems will provide care for individuals with these disorders. This needed care may range from providing information, referring to community-based organizations, and monitoring for those with early disease to delivering intensive care management for those with medical and psychosocial complications. Because of the diversity of needs and range of costs associated with different types of dementia care, a population-based approach that tailors interventions to the needs of subpopulations will best meet the triple aim of better quality, better outcomes, and lower costs for individuals with dementia. We provide an example of how a population-based approach can be implemented and identify strategies for caring for different subpopulations of people with dementia.

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Although heart disease is the leading cause of death in the United States, few patients with heart disease are referred to palliative care, and for those that do receive such a referral this occurs much too late, a new study shows. 

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Most respondents to a recent survey in the U.K. said they aren't sure what will happen in their final days, a sign of the challenges faced by health-care providers there and in Canada when helping aging populations die with dignity. 

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Benjamin Franklin famously quipped that the only certainties in life are death and taxes. Today, most people could justifiably add, "and I don't understand either of them."

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It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life.

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High rates of health care utilization at the end of life may be a marker of care that does not align with patient-stated preferences. We sought to describe trends in end-of-life care and factors associated with dying in hospital.

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The article entitled “Plan now for end-of-life issues” by David Amies (April 26) is a welcome reminder that we are all immortal and need to plan for the eventuality of our death.>

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(HealthDay)—An interdisciplinary care protocol for frail geriatric trauma patients significantly reduces the risk for delirium and 30-day readmission, according to a study published online April 5 in the Journal of the American College of Surgeons.

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Fewer than half of physicians, nurses, and advanced practice registered nurses (APRNs) report always or frequently having end-of-life discussions with older patients with chronic illnesses, according to a recent Medscape poll.

The providers also say many patients put off the discussions as well.

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While the particular health-care concerns of transgender people have been documented and transgender aging is an emerging area of scholarship, little is known about planning for later and end-of-life care among transgender older adults. As part of a larger project, focus groups and interviews were conducted with 24 transgender older adults (average age 70 years) living in five cities in Canada exploring their concerns and explicit plans for later life care. Three primary themes emerged: (a) “dealing with the day-to-day” reflecting economic precarity and transitioning in later life, (b) fractures and support within family and community, and (c) “there’s a huge gap between principle and practice” reflecting mixed experiences and perceptions of health-care services. These themes suggest that effective promotion of care planning among older transgender persons requires an appreciation of the daily exigencies of their lives and the extent and nature of social support available to them.

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 “Feeling optimistic,” Grant Schlotter wrote on Facebook on Aug. 14, 2018. In the post, he announced to family and friends that he was in a Victoria hospital, where he was being nursed back to health. Mr. Schlotter – Myster to his friends – was a hockey fan, a cat lover, a one-time insurance broker and a drug user.

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Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study’s purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data. Four primary themes were identified as barriers: (1) hindrances to information; (2) barriers to hospice; (3) ineffective attempts to comfort; and (4) the nature of death with dementia. Six themes were identified as facilitators: (1) religious/spiritual beliefs; (2) caregiver initiative; (3) prior experience; (4) bearing witness to decline; (5) professionals alerting caregiver (of what to expect of impending death); and (6) culture and legacy of family caregiving. The results support an increased role of social work in addressing caregivers’ awareness of impending death and helping prepare them for the death of an elder with dementia. 

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Few of us are eager to think about our final days, and we all hope to make our own healthcare decisions until the end. But, for many of us, there will come a point when we will be unable to do so (1;2). 

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The Care Homes Quality Assurance nurses and commissioners at Haringey Clinical Commissioning Group (CCG) led on the development and implementation of a nurse-led Advanced Care Planning facilitator project in care homes. The new initiative complements existing End of Life Care (EOLC) provision in care homes and has delivered improved outcomes, experiences and use of resources, whilst supporting continued high-quality care for those who use the service. 

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Elder care leaves families stressed, exhausted and looking for help, a challenge particularly felt by women. A patchwork of hospital programs, government supports and online communities shows a way forward

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To describe the rate of do-not-resuscitate (DNR) and do-not-hospitalize (DNH) orders among residents newly admitted into long-term care homes. We also assessed the association between DNR and DNH orders with hospital admissions, deaths in hospital, and survival. 

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 Nancy Schoenborn, a geriatrician at Johns Hopkins University’s School of Medicine, noticed that doctors increasingly are being told by their professional organizations to treat patients in the last decade or so of life differently. Less aggressive control of blood sugar and blood pressure makes sense for people with fewer years to go, the guidelines suggest. Screening tests for certain cancers probably won’t be beneficial if a patient is unlikely to live at least an additional 10 years.

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Using data from more than 150,000 patients, researchers conclude that there is room for deprescribing of preventative medicines in older people with cancer. Older patients with cancer receiving end-of-life care may be overprescribed preventative medicines, study results have shown[1]. The researchers also found that patients’ quality of life could be improved by deprescribing. 

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Researchers analyzed 21 studies to determine the impact of age on mortality in elderly subjects on mechanical ventilation. Eligible studies compared two different age groups. Mortality in subjects ages ≥ 65 years was considered the primary outcome, and the secondary outcomes included severity scores, intensive care unit and hospital lengths of stay, and the presence of ventilator-associated pneumonia. Via subgroup analysis, subjects with ARDS and of cutoff ages of 70 and 80 years were examined for mortality. Despite low-quality evidence, the investigators concluded that age may be associated with greater mortality in critically ill subjects receiving mechanical ventilation.

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 Words have a power that is deeper and stranger than their accepted definitions. When the end of life is inevitable and patients or their families consent, we may withdraw aggressive therapies or medications, or stop interventions, but we should never withdraw care.

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Dementia is a progressive and incurable condition, causing significant public health burden to individuals, families, and society.1 In response, the United States National Plan to Address Alzheimer's Disease established goals to address the impact of dementia, including expanding supports for people with dementia and their families.2 Congress has exponentially increased National Institutes of Health funding for dementia research since 2015. Yet, there is an elephant in the room: death. 

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In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide. 

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Toby G. Campbell, MD, MSCI, is a thoracic oncologist and palliative care physician from the University of Wisconsin Carbone Cancer Center. He began his talk during Saturday’s final session of the 2019 National Comprehensive Cancer Network (NCCN) Annual Conference with a confession: “I cannot practice palliative [care] and oncology very effectively at the same time,” he said. 

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 In their latest op. ed. George Heckman and Paul Hébert state that, “Because we do not have crucial discussions, as many as 30 percent of [older adults living with frailty living in nursing homes] are admitted to an intensive care unit and 50 percent to hospitals in their last month of life. Because we have not normalized difficult conversations around death, we will never know whether this is what they would have wished. A key reason is fear.”

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To individually plan end-of-life care, open communication about a person’s preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person’s underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting “early,” including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered.

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 Aged care’s palliative care evidence and practice resource centre has developed two new resources to help aged care nurses and care workers provide quality end-of-life care to residents.

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A FEW YEARS ago, on a warm sunny afternoon, my 90-year-old father-in-law was sweeping his patio when he suddenly felt weak and dizzy. Falling to his knees, he crawled inside his condo and onto the couch. He was shaking but not confused when my wife, Susan, came over minutes later, since we lived just a block away. She texted me at work, where I was just finishing my clinic, and asked me to come over.

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A challenge for commissioners and providers of end-of-life care in dementia is to translate recommendations for good or effective care into quality indicators that inform service development and evaluation.

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The federal government has launched three new trial programs offering face-to-face assistance to senior Australians and their families in every state and territory, including selected rural and remote areas.

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Palliative care has an image problem: patients and families have negative views about receiving it, and those who need it commonly enter care reluctantly or too late. Boyd and colleagues (doi:10.1136/bmj.l881) discuss whether these unfavourable ideas might improve if palliative care were rebranded, perhaps as “enhanced” or “best supportive care.” The term “end of life care” is not optimal, because palliative interventions are helpful, and should be introduced, well before the end of life. Ultimately the authors conclude that attitudes, not names, should change. But they acknowledge that positive language matters. Rather than describing palliative care as an end of life intervention, doctors and families should instead consider it “an opportunity for specialist advice on managing pain and other symptoms, for help with complex decision making, and in preparing for the future.”

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Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of Advance Care Planning by this group across a number of countries where Advance Care Planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote Advance Care Planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape Advance Care Planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities; and to promote older peoples’ ability to enact moral agency in making such decisions. 

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The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care. 

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Healthcare organizations are expanding community‐based serious illness care programs to deliver care for homebound patients. Programs typically focus on home‐based primary care or home‐based palliative care, yet this population may require both services. We developed and evaluated a primary and palliative care program serving seriously ill older adults, called the Reaching Out to Enhance the Health of Adults in Their Communities and Homes (REACH) program. Our objective was to determine the impact of the REACH program on healthcare utilization and the patient care experience.

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End-of-life care and expectations are difficult topics for many families and even some clinicians. Over the past few years, the caregiving emphasis has shifted from an effort to save or prolong someone's life by any means necessary to a more nuanced approach that favors quality of life. Doing so often means removing or avoiding invasive medical interventions such as mechanical ventilation, or breathing tubes, and other procedures such as continuous intravenous medications and dialysis that require frequent monitoring by medical staff. 

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