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.

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.

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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.

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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.

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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.

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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.

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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.

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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.”

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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

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

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Advance directives emerged in the 1960s with the goal of empowering people to exert control over their future medical decisions. However, it has become apparent, over recent years, that advance directives do not sufficiently capture the temporal and relational aspects of planning treatment and care.

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I met Anton* earlier this year, shortly after starting my residency training to become a family physician. A Ukrainian gentleman in his 80s, Anton had been living largely independently with his son, spending his days cooking, cleaning and keeping up with sports on TV. Then, without warning, he had developed vision loss and a severe headache. A CT scan showed a bleed into his brain that couldn’t be surgically removed. My job was to evaluate the progress of his symptoms, monitor his pain and coordinate his plan for discharge with his son. Read More>

Relatively little is known regarding predictors of advance care planning (ACP) in former nurses. We aimed to evaluate potential predictors of ACP documentation and discussion. Read More>

With an increased dependency on nursing homes to provide care to the ageing population, it is likely that ethical issues will also increase. This study aimed to identify the type of ethical issues and level of associated distress experienced by nurses providing palliative care in nursing homes in the UK and Canada, and pilot the Ethical issues in Palliative Care for Nursing Homes (EPiCNH) instrument in Canada. Read more>

While enjoying her seventh decade on the planet, Donna Personna knows her remaining days are numbered. Yet the prospect of her demise doesn't scare her. Read More>

Two nurses with a passion for aged care have thrown in their jobs to become digital entrepreneurs dedicated to empowering people as they age or face the end of their life. Read More>

Patients' end-of-life surrogates are overly confident in their readiness to make crucial decisions for their loved ones, recent research shows. Read More>

Developing the Framework on Palliative Care in Canada would have been impossible without the participation and direction-setting provided by key organizations, groups and individuals, including provinces and territories and other federal government departments. 

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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>

They say the kitchen is the heart of the home. It’s a place of congregation and conversation; where meals are created, coffee is brewed, and stories are shared.

After embarking on a renovation project this summer, I’ve come to discover there are many common threads between kitchens and home care, particularly when it comes to design and the need for innovation. In both cases, the goal is to create something that works for your needs and fits with your lifestyle, preferences and patterns. With that in mind, here are my top three tips and some practical insight for updating your kitchen – or better yet, modernizing home care in Ontario.

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Regardless of one’s healthcare condition, contemplating end-of-life care is never an easy thought process for the patient or loved ones. For nurses who are tasked with helping to guide decisions related to the initiation of palliative care and advanced directives, no two scenarios are the same and ethical dilemmas can often arise. ADVANCE recently spoke with three nurses who shared their most frequent types of ethical decisions that they’re confronted with and how they have attempted to navigate specific encounters. Read More>

Shared decision making (SDM) is a process by which a healthcare choice is made by the patient, significant others, or both with one or more healthcare professionals. However, it has not yet been widely adopted in practice. This is the second update of this Cochrane review. Read More>

Dementia carers require more support and guidance to navigate the end-of-life care for their loved one, a new international study has found. Read More>

The Institute of Medicine identifies that quality palliative/end-of-life (EOL) care should be provided to patients with serious, life-limiting illnesses and their families by competently prepared health professionals.Read More>

New international research from Advance Care Planning Australia (ACPA) reveals that dementia carers need more support and guidance to navigate end-of-life care for their loved one. 

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Emergency-room doctor Kevin Haselhorst had an epiphany while he tried valiantly to save an elderly man who’d been through one-too-many traumas. His book, “Wishes To Die For: A Caregiver’s Guide to Advance Care Directives,” was the first step toward a new advocacy. Dr. Haselhorst continues to work toward helping people understand the importance of healthcare directives and the ability to make their own decisions about end-of-life care. Curious about more of Dr. Haselhorst’s views, the Candid Caregiver contacted him through email for the following interview. Read More>

End-of-life debates in medical ethics often centre around several interrelated issues: improving care, avoiding coercion, and recognising the dignity and rights of the terminally ill. Care ethics advocates relational autonomy and non-abandonment. These commitments, however, face system pressures—economic, social and legal—that can be coercive. This article takes up two related aspects in this domain of ethics. Firstly, that competence and communication are core clinical ethics principles that can sidestep the overplayed dichotomies in end-of-life care. And secondly, it questions the assumption that advance directives are universally benevolent—comparing the provisions of the Council of Europe’s 1999 recommendations on protection of human rights and dignity of the dying within the framework of the Irish context. The article also registers the unintended impacts of changing legal frameworks in relation to euthanasia and assisted suicide in Europe, including recent proposals in the Netherlands. A focus on human dignity can provide a theologically and philosophically shared normative orientation that argues for present directives rather than only advance directives, and a presumption in favour of ‘living up to death’. Dignity approaches not only grant rights but secure them by supporting ongoing initiatives that honour, rather than erode, the ‘longevity dividend’. Read More>

The relief of patients’ suffering – both physical and non-physical – is a primary aim of palliative care, and has been described as an obligation and ethical duty for palliative care providers. This paper suggests that common approaches to relieving patients’ non-physical suffering – such as creating opportunities to make meaning, achieve personal growth, and hone one’s resiliencies – comprise the larger, more tellable part of the palliative care discourse. A more marginal, less tellable part of the discourse acknowledges that some non- physical suffering cannot necessarily be relieved. Inspired by Foucauldian writings, this paper suggests that palliative care discourse may be disciplining the relief of non-physical suffering, with unintended ramifications for front-line practice. Making more space for both the tellable and untellable stories of patients’ non-physical suffering holds potential for an evolved palliative care discourse; one that un-disciplines dying. Read more>

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