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.

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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