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.

 “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.

Read More>

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. 

Read More>

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). 

Read More>

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. 

Read More>

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

Read More>

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. 

Read More>

 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.

Read More>

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. 

Read More>

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.

Read More>

 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.

Read More>

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. 

Read More>

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. 

Read More>

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. 

Read More>

 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.”

Read More>

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.

Read More>

 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.

Read More>

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.

Read More>

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.

Read More>

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.

Read More>

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.”

Read More>

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. 

Read More>

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. 

Read More>

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.

Read More>

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. 

Read More>

The number of older people living and dying with frailty is rising, but our understanding of their end-of-life care needs is limited.

Read More>

 Researchers evaluated potential predictors of advance care planning (ACP) documentation and discussion via this cross-sectional study, 2012-2014. Participants comprised a total of 60,917 community-dwelling female nurses aged 66 to 93 years living across the United States. Based on self-reports, ACP documentation was noted in the large majority (84%); 35% reported a recent ACP discussion. This suggests a major participatory gap in an element critical to ACP effectiveness. Demographic factors such as age and race were noted to be correlated with both ACP categories. Multivariable analyses suggested that race had the most strong association: compared with whites, African Americans were 27% less likely to report ACP documentation alone and 41% less likely to report documentation with discussion.

Read More>

Seriously ill people near death face difficult decisions about life-sustaining treatments such as cardiopulmonary resuscitation and mechanical ventilation. Patient decision aids may improve alignment between patients’ preferences and the care they receive, but the quantity, quality, and routine use of these tools are unknown. We conducted a systematic environmental scan to identify all decision aids for seriously ill people at high risk of death facing choices about life-sustaining treatments, assess their quality, and explore their use in clinical settings. We searched MEDLINE, Google, and mobile application stores and surveyed experts. We included 27 decision aids in our scan. Concerning content, 14 of 27 decision aids for seriously ill people near death were for people with specific diseases and conditions (ie, advanced cancer or kidney disease); 11 concerned individual life-sustaining treatment decisions (ie, cardiopulmonary resuscitation or mechanical ventilation). Only two focused on more general care pathways (ie, life-sustaining intervention, palliative care, and hospice). Twenty-four of 27 decision aids presented options in a balanced way; 23 identified funding sources, and 19 of 27 reported their publication date. Just 11 used plain language. A minority, 11 of 27, listed evidence sources, five documented rigorous evidence-synthesis methods, six disclosed competing interests, and three offered update policies. Preliminary results suggest that few health systems use decision aids in routine patient care. Although many decision aids exist for life-sustaining treatment decisions during serious illness, the tools are deficient in some key quality areas. 

Read More>

 The topic of critical and end-of-life care is a subject that unites us all as humans but is one that we often avoid until the very last moment. Rob Epstein and Jeffrey Friedman’s short documentary End Game is less an exploration about palliative care and more a celebration of the compassionate care that can and should be offered to all of us at that existential moment in our lives when the transition between life and death comes into bold relief.

 Read More>

Although providing direct care to residents with dementia, long-term care (LTC) home staff of registered nurses’, registered practical nurses’, and personal support workers’ involvement in end-of-life decision-making is rarely acknowledged. The purpose of this study was to examine barriers and facilitators to LTC home staff involvement in end-of-life decision-making for people with advanced dementia. We report on the barriers to staff involvement in decision-making. Using an interpretive descriptive design, four major barriers to staff involvement in decision-making were identified: (a) the predominance of a biomedical model of care; (b) a varied understanding of a palliative approach; (c) challenging relationships with families; and (d) a discomfort with discussing death. Findings suggest that the predominant biomedical model in LTC homes, while important, must be imbued with a philosophy that emphasizes relationships among residents with dementia, family and staff.

Read More>

Cancer is the leading cause of death in the developed world, and yet healthcare practitioners infrequently discuss goals of care (GoC) with hospitalized cancer patients. We sought to identify barriers to GoC discussions from the perspectives of staff oncologists, oncology residents, and oncology nurses.

Read More>

Families' reports of unpleasant experiences with end-of-life care may inform practice to improve perceived quality of dying of their loved ones. Humane and compassionate care and attention from physicians and other staff for resident and family may facilitate recollections of a peaceful death.

Read More>

To develop and validate a values clarification tool, the Short Graphic Values History Tool (GVHT), designed to support person-centred decision making during serious illness.

Read More>

Evidence demonstrates that discussion between clinicians and seriously ill patients about their goals and preferences, or serious illness communication, is a high-value intervention, resulting in growing demand for improvement in this area. Promising efforts address this demand utilizing interprofessional teams; yet, we lack insight into how different professions work together to deliver better serious illness communication.

Read More>

Oregon’s end-of-life medical directive form, or POLST form, will no longer include the option of having a feeding tube.

Feeding tubes are surgically inserted through the abdomen wall and deliver food. Doctors say they work well for patients in a coma or living with a condition like Lou Gehrig’s disease.

But Dr. Susan Tolle with Oregon Health & Science University’s Center for Ethics In Health Care, said research shows the tubes can be harmful for people with dementia. They tend to increase discomfort and agitation, she says, and that can lead to the use of restraints and as a result, bedsores.

Read More>

Designing and implementing population-based systems of care that address the social determinants of health, take action on multiple levels, and are guided by evidence-based principles is a pressing priority, and an international challenge. Aging persons are a priority demographic whose health needs span physical, psychosocial and existential care domains, increase in the last year of life, are often poorly coordinated and therefore remain unmet. Compassionate communities (CCs) are an example of a public health approach that fully addresses the holistic healthcare needs of those who are aging and nearing end of life. The sharing of resources, tools, and innovations among implementers of CCs is occurring globally. Although this can increase impact, it also generates complexity that can complicate robust evaluation. When initiating population health level projects, it is important to clearly define and organize concepts and processes that are proposed to influence the health outcomes. The Health Impact Change Model (HICM) was developed to unpack the complexities associated with the implementation and evaluation of a Canadian CC intervention. The HICM offers utility for citizens, leaders and decision-makers who are engaged in the implementation of population health level strategies or other social approaches to care, such as compassionate cities and age or dementia-friendly communities. The HICM’s concepts can be adapted to address a community’s healthcare context, needs, and goals for change. We share examples of how the model’s major concepts have been applied in the development, evaluation and spread of a complex CC approach.

Read More>

Advance care planning (ACP) is understudied among American Indian individuals. A cross-sectional, self-administered survey was conducted with a convenience sample of 200 American Indian and 436 non-Hispanic White older adults from two Midwestern states to identify correlates of ACP. Compared with their White peers, American Indian older adults were significantly less likely to have an end-of-life (EOL) care plan or to have completed a durable power of attorney for health care (DPAHC) or a living will. Multivariate logistic regression showed that having an EOL plan was associated with older age, having some college education or more, and having a greater number of chronic conditions, but not with race. Having a DPAHC was associated with being White, older age, having lower levels of depressive symptoms, and having a greater number of chronic conditions, whereas completing a living will was associated with being White, older age, having some college education or more, and having a greater number of chronic conditions. Nurses need to engage in targeted culturally sensitive approaches to promote ACP, grounded in indigenous cultures' health beliefs and practices.

Read More>

In emergencies, the elderly die. Here’s how we can start to change that.

With the Vulnerable Persons at Risk (VPR) algorithm, seniors don’t have to be helpless in the face of disaster.

“Older adults living in their own homes are more likely to be harmed in a disaster because of physical frailty, disability and social isolation. They often have needs that make them more vulnerable and less able to cope with the physical and mental challenges posed by disasters.”

Read More>

Researchers explore the potential of artificial intelligence (AI) to improve patient/provider communication, including providing information about patients' physical and mental health, detecting high-risk situations when providers are under stress, and preventing unnecessary testing.

Read More>

New report aims to guide a national dementia strategy for Canada

An expert panel has released a report outlining the best ways to tackle the growing incidence of Alzheimer's and other forms of dementia among Canadians as a basis for the federal government's long-promised national strategy on the progressive brain diseases.

Read More>

The average expected lifespan in Canadian long-term care (LTC) homes is now less than two years post-admission, making LTC a palliative care setting. As little is known about the readiness of LTC staff in Canada to embrace a palliative care mandate, the main objective of this study was to assess qualities relevant to palliative care, including personal emotional wellbeing, palliative care self-efficacy and person-centred practices (e.g. knowing the person, comfort care). A convenience sample of 228 professional and non-professional staff (e.g. nurses and nursing assistants) across four Canadian LTC homes participated in a survey. Burnout, secondary traumatic stress and poor job satisfaction were well below accepted thresholds, e.g. burnout: mean = 20.49 (standard deviation (SD) = 5.39) for professionals; mean = 22.09 (SD = 4.98) for non-professionals; cut score = 42. Furthermore, only 0–1 per cent of each group showed a score above cut-off for any of these variables. Reported self-efficacy was moderate, e.g. efficacy in delivery: mean = 18.63 (SD = 6.29) for professionals; mean = 15.33 (SD = 7.52) for non-professionals; maximum = 32. The same was true of self-reported person-centred care, e.g. knowing the person; mean = 22.05 (SD = 6.55) for professionals; mean = 22.91 (SD = 6.16) for non-professionals; maximum = 35. t-Tests showed that non-professional staff reported relatively higher levels of burnout, while professional staff reported greater job satisfaction and self-efficacy (p < 0.05). There was no difference in secondary traumatic stress or person-centred care (p > 0.05). Overall, these results suggest that the emotional wellbeing of the Canadian LTC workforce is unlikely to impede effective palliative care. However, palliative care self-efficacy and person-centred care can be further cultivated in this context.

Read More>

 

OTTAWA, Jan. 15, 2019 /CNW/ - The Canadian Foundation for Healthcare Improvement (CFHI) today announced that it is working with seven organizations across five provinces and one territory to spread Embedding Palliative Approaches to Care (EPAC). EPAC is a proven innovation that helps staff in long term care identify residents who could benefit from a palliative approach to care, have conversations with them and their families about what they want, and develop and implement comprehensive care plans.

Read More>

Background
Advance care planning may be beneficial for nursing home residents, but its implementation is suboptimal in several countries.

Aims
To investigate knowledge of, attitudes towards, and experience with advance care planning of nursing home staff members in Italy.

Read More>

The geriatric (≥65 years of age) population is one of the fastest growing age groups in the United States. As this number increases, so does the number of geriatric trauma patients. Because this group has higher mortality rates and requires more resources, a Geriatric Trauma Palliative Care Program was created at a Level 1 Trauma Center in Dallas, TX, to provide concurrent lifesaving therapies and primary palliative care to older adults. The trauma program implemented the American College of Surgeons (ACS) Trauma Quality Improvement Program Palliative Care Best Practices Guidelines (ACS, 2017) to better care for acute traumatic injuries as well as the specific spiritual, emotional, and psychiatric needs of the geriatric trauma palliative care patient and family. Using the guidelines, the team performed a gap analysis, carried out program development, created a palliative care pathway to guide our evidence-based practice implementation, and performed retrospective chart reviews for 3-month pre- and postimplementation analysis. Using Person's χ2 test and Fisher's exact test, our initial evaluation of the program showed statistically significant (p < .001) improvements in the measures related to the implementation of primary palliative care, pain and symptom management, and end-of-life care. The guidelines gave the team a consistent framework for implementing the basic competencies required to deliver primary palliative care, pain and symptom management, and end-of-life care to trauma patients.

Read More>

Advance care planning conversations traditionally have been promoted using the Standard of Substituted Judgment and the Standard of Best Interests. In practice, both are often inadequate. Patients frequently avoid these conversations completely, making substituted judgment decisions nearly impossible. Surrogates are also often unable to make clinical decisions representing the best interests of family members as patients. Many physicians are unskilled at discussing these difficult and complex decisions with surrogates as well. Using an integrative family medicine ethics approach, we present a case study that demonstrates how skillful family physicians might introduce and conduct these conversations at routine office appointments, reconciling ethical theory with both patient-centered and physician-centered considerations in a practical and time-sensitive fashion. We believe 3 physician behaviors will help prepare patients to engage their surrogates and help empower surrogates to serve their role well, if and when that time comes: 1) thinking broadly about clinical issues and ethical considerations; 2) engaging in a mindful and contemporaneous deliberation with the patient—and surrogate when appropriate and possible—about these issues and considerations; and 3) cultivating a reflective responsiveness to these interactions, both when things go well and when they do not.

Read More>

A built environment designed to be appropriate for palliative care can make a profound difference for people with life-limiting illnesses. The built environment affects a patient’s quality of life, the management of physical and psychological symptoms, and the quality of social interactions with loved ones and caregivers. This article is informed by the emerging trends in the research and practice in the disciplines of architecture, design, medicine, and nursing. The article is intended to provide a definition of palliative design and invite discussion of its potential impact on patients, families, and caregivers. Our goal is to initiate conversation about palliative design, foster sharing of experiences and feedback among building professionals, and discuss future paths for formal adoption into practice.

Read more>

Death is the ultimate inconvenient truth, its inevitability a conversation that far too many doctors still go out of their way to avoid, according to a recent report by Britain’s Royal College of Physicians. Talking about dying: How to begin honest conversations about what lies ahead looks at why doctors and other health care professionals find it so difficult to talk about dying to patients who are frail or terminally ill. Everyone realizes that early and honest conversations allow both doctors and patients to better explore the choices around their future care. So why isn’t it happening as often as it should?
Read More>

Imagine an 82-year-old patient – we’ll call him Mr. A -- with severe congestive heart failure, bouncing in and out of the hospital with increased frailty. During one hospital admission, Mr. A’s cardiologist consults the palliative care team for symptom management and clarification of goals of care. Mr. A tells the palliative care team that what matters most to him is to return home to be with his wife. He does not want to be placed on a ventilator, nor does he want aggressive measures taken. He agrees to go to a skilled nursing facility (SNF) for strengthening but says that if his heart failure worsens, he wants to return home.
Read More>

Pull the headset over your eyes and the world around you fades. You have become 66-year-old Clay Crowder, and you are dying.

Read More>

To explore how nonphysicians and physicians interpret the word “treatable” in the context of critical illness.

Read more>

Back to top