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.

Dying at home – our grandfather’s great escape

Our 94-year-old grandfather’s last journey was not a glorious affair, an inelegant denouement to a life marked by global travel and migration. Still, to us, as we pushed his wheelchair out of the hospital lobby, it felt like we were making the “Great Escape.” It must have been a strange sight, 2 young physicians awkwardly transferring their grandfather into the passenger seat of their car, discharging him from the hospital against the expectation that he should remain there given his poor state of health. Once home, as we rolled him through the driveway toward his house, we took a family photograph, holding up his flaccid arms like a victorious heavyweight after a grueling 12 rounds. We breathed a collective sigh of relief knowing that he would spend his last days in the comfort of his home, surrounded by loved ones. We could sense his relief as well, as he settled back into his bed facing his television—news blaring, as always—and slept calmly for the first time in weeks. 

Read full text *gated >>

<< Back to Publications

Triggered Palliative Care for Late-stage Dementia: a Pilot Randomized Trial

This pilot randomized controlled trial enrolled 62 dyads of persons with late-stage dementia and family decision-makers on admission to hospital. Intervention dyads received dementia-specific specialty palliative care consultation plus post-acute transitional care. Control dyads received usual care and educational information. The primary outcome was 60-day hospital or emergency department visits. Secondary patient and family-centered outcomes were patient comfort, family distress, palliative care domains addressed in the treatment plan, and access to hospice or community-based palliative care. Secondary decision-making outcomes were discussion of prognosis, goals of care, completion of Medical Orders for Scope of Treatment (MOST), and treatment decisions.

Results

Of 137 eligible dyads, 62 (45%) enrolled. The intervention proved feasible, with protocol completion ranging from 77% (family 2-week call) to 93% (initial consultation). Hospital and emergency department visits did not differ (intervention vs control, 0.68 vs 0.53 transfers per 60 days, p=0.415). Intervention patients had more palliative care domains addressed, and were more likely to receive hospice (25% vs 3%, p<0.019). Intervention families were more likely to discuss prognosis (90% vs 3%, p<0.001) and goals of care (90% vs 25%, p<0.001), and to have a MOST at 60-day follow-up (79% vs 30%, p<0.001). More intervention families made decisions to avoid re-hospitalization (13% vs 0%, p=0.033).

Conclusion

Specialty palliative care consultation for hospitalized patients with for late-stage dementia is feasible and promising to improve decision-making and some treatment outcomes.

Continue reading >

< Back to Publications

How AI could transform elder care

A House of Commons (UK) committee questioned a humanoid robot, Pepper, to see how artificial intelligence (AI) and robotics can be used to help care for older people.

Pepper is currently based at Middlesex University and works with final year students on robotics, psychology, biomedicine and education. An identical robot with different programming is also part of a three-year international research project called Caresses, which is developing the world’s first culturally aware robots aimed at assisting with care for older people.

Pepper told the education select committee that the service could cut costs for caring for older people, as well as helping with issues such as loneliness.

Pepper said: “Assistive intelligent robots for older people could relieve pressure on hospitals and care homes as well as improve the care delivery at home and promote independent living for elderly people.”

SoftBank Robotics, the firm behind Pepper, claims that the humanoid is capable of ‘understanding and reacting to main human emotions’. It states: “Pepper is well equipped with features and a high level interface for communicating with those around him. Pepper analyses expressions and voice tones using the latest advances in voice recognition.”

Continue Reading >

< Back to Publications

Doctors need to improve their conversations with dying patients, says RCP

Doctors need to speak to patients with terminal illnesses in a timelier way and handle conversations with greater compassion and confidence, says a report from the Royal College of Physicians.

The report, which examined why clinicians find it difficult to talk to patients about death, found that some doctors thought that death could be perceived as a failure and that modern medicine was expected to cure all ailments. However, evidence from patients and carers indicated that many people wanted to talk about death and that planning helped them feel more empowered about their care and decision making. …

View Full Text (BMJ subscription required) >

< Back to Publications

Aggressive EOL Care Negatively Impacts Care Quality, Health Costs in Metastatic Lung Cancer

Among patients with metastatic lung cancer there has been a substantial increase in ICU use during terminal hospitalizations, resulting in high cost for the health care system.

"Aggressive medical care at the end of life for patients with cancer has not demonstrated a survival benefit and is associated with worse quality of life for patients,” write the authors of a study published in the American Society of Clinical Oncology. The authors of the study evaluated aggressive care at the end of life in patients with metastatic lung cancer, and concluded that aggressive care at the end of life is poor-quality care.

The study included a total of 412,946 patients identified from the National Inpatient Sample database with stage IV lung cancer who had been terminally hospitalized between 1998 and 2014. The researchers used longitudinal analysis to determine trends in aggressive inpatient care at the end of life and multivariate logistic regression to determine associations with patient and hospital characteristics."

Continue reading >

< Back to Publications

How much end‐of‐life care is of low value?

A significant proportion of healthcare expenditure is spent on patients in their last year of life. In the United States, such patients accounted for 25% of the Medicare budget in 2009,1 with more recent data from 2009 to 2011 from nine developed countries showing the share of total healthcare spend incurred ranging from 8.5% in the United States to 11.2% in Taiwan.2 In Australia, hospital care for the last year of life for those aged 65 years and over constitutes around 9% of all inpatient costs.3

A rising concern is how much of this relatively expensive end‐of‐life care is of low value, that is, ineffective or even harmful. In one study, 12% of admissions to three Australian tertiary hospitals involving patients at the end of life involved the administration of futile care, as defined by audit criteria and expert consensus.4 A systematic review of 38 studies found that on average one in three older patients in the last 6 months of life received interventions in hospital that were very unlikely to confer benefit.5 These included dialysis, radiotherapy, transfusions, antibiotics, life support treatments and unnecessary and often invasive investigations. The same review found non‐beneficial intensive care unit admission involved one in 10 patients. Surveys of older patients in the United States indicate receiving inappropriate care with its unintended consequences is perceived as more of a problem than being denied appropriate care.6

Continue reading >

< Back to Publications

Registration is now open for the 2019 Advance Care Planning - International conference in Rotterdam, the Netherlands from 13-16 March, 2019!

You can now find the exciting plenary programme on the conference website www.acpi2019.com. Bio’s and titles of presentations will be added soon.

The deadline for abstracts is 28 October, 2018. Note that the conference intends to consider abstracts about policy initiatives, ethical reasoning, legal issues etc., and proposals for themed sessions or workshops.

Read moreACP-I 2019 Conference - March 13-16, 2019 in Rotterdam, the Netherlands

UK Researchers explore why minority ethnic patients access end of life care less

Health professionals in Leicester are pioneering a new approach to end-of-life care for black, Asian, and minority ethnic (BAME) communities after recent research showed they access end-of-life care less and clinicians are not as confident in supporting them.

By undertaking a major new study, LOROS Hospice and Leicester’s Hospitals are trying to find out why BAME communities are accessing end-of-life care services less than other patients, and at a later stage when interventions then become necessary.

This is even though the government has pledged a high standard of end-of-life care for all patients, regardless of their background.

The 30-month-long study, entitled, ‘Thinking Ahead: Exploring and understanding experiences and decisions in end-of-life care for people from minority ethnic communities’ is supported by a grant of £417,000 from the National Institute for Health Research (NIHR).

Continue reading >

< Back to Publications

Moral distress in intensive care unit professionals is associated with profession, age, and years of experience
Journal of Critical Care
Peter M. Dodek, MD, MHS, Hubert Wong, PhD, Monica Norena, MS, Najib Ayas, MD, MPH, Steven C. Reynolds, MD, Sean P. Keenan, MD, MSc, Ann Hamric, RN, PhD, Patricia Rodney, RN, PhD, Miriam Stewart, RN, BSN, BA, Lynn Alden, PhD
February 2016.

'There isn't anywhere to go': Ontario halfway house for aging inmates addressing gap in prison system

According to the Office of the Correctional Investigator (OCI), 1 in 4 federal inmates behind bars is 50 or older — which classifies them as older offenders because serving time can add about 10 years to a chronological age.

In response to the number of aging offenders behind bars and on parole, the OCI and the Canadian Human Rights Commission are set to release a report later this fall on what they call "the systemic discrimination of aging and elderly offenders."

"The system is trying to play catch-up," said Jeff Morgan, Haley House's casework manager. "Nobody stepped back and said, 'Hey, we got these older guys, what are we going to do with them? When they get sick, when they go out and we still have to monitor them, where are we going to put them?'

"You end up with guys that are sitting inside [prison], that are granted parole — but they can't leave, because there isn't anywhere to go," said Morgan, a retired, 32-year veteran of the Peterborough Police Service.

Read more >

< Back to Publications

Causes of moral distress in the intensive care unit: A qualitative study.
Pub Med.
Henrich NJ, Dodek PM, Alden L, Keenan SP, Reynolds S, Rodney P.
October 2016.

Meaningful connections in dementia end of life care in long term care homes

Background

Most persons with dementia die in long term care (LTC) homes, where palliative approaches are appropriate. However, palliative approaches have not been widely implemented and there is limited understanding of staff and family experiences of dying and bereavement in this context.

Method

This descriptive qualitative study explored family and staff experiences of end of life and end of life care for persons with dementia in LTC homes. Eighteen focus groups were conducted with 77 staff members and 19 relatives of persons with dementia at four LTC homes in four Canadian provinces.

Results

Three themes emerged: knowing the resident, the understanding that they are all human beings, and the long slow decline and death of residents with dementia.

Read more >

< Back to Publications

Recovery after critical illness in patients aged 80 years or older: a multi-center prospective observational cohort study. 
Intensive Care Med.
Heyland DK, Garland A, Bagshaw SM, Cook D, Rockwood K, Stelfox HT, Dodek P, Fowler RA, Turgeon AF, Burns K, Muscedere J, Kutsogiannis J, Albert M, Mehta S, Jiang X, Day AG.   
November 2015.

Teaching Communication Skills to ICU Nurses

How do you teach communication in serious illness?  Can you?  Do you teach it the same way to doctors and nurses in training?  What level trainee do you target - medical students, interns, residents?  How do we know our teaching is working?

We discuss these and other bread and butter communication issues with Dr. Wendy Anderson, a palliative care physician at UCSF, director of the Bay Area Hub for Vitaltalk, and leader of IMPACT-ICU, a project to train ICU nurses in communication.  

Listen to the GeriPal podcast episode >

< Back to Publications

The Very Elderly Admitted to ICU: A Quality Finish?
Crit Care Med. 
Heyland D, Cook D, Bagshaw SM, Garland A, Stelfox HT, Mehta S, Dodek P, Kutsogiannis J, Burns K, Muscedere J, Turgeon AF, Fowler R, Jiang X, Day AG;Canadian Critical Care Trials Group; Canadian Researchers at the End of Life Network.  
July 2015.

 

"The trouble with hospitalized seniors" by Dr. Brian Goldman

 
"Hospital readmissions are a huge and growing problem in Canada. Researchers from Alberta and Ontario looked at more than 700,000 Ontario patients over the age of 65 with an average age of just over 78 years of age. 
 
Overall, 88,000 or 12 per cent of the patients had to be readmitted to hospital within 30 days of being discharged. Forty per cent of the patients had five or more chronic medical conditions. The big ones included arthritis, Type 2 diabetes, heart disease, anxiety, depression or cancer.
 
As an ER physician on the front lines, I see this all the time. It used to be once a shift. Now, it feels like I'm seeing three or four patients per shift who have returned to the ER after having been admitted and discharged from the hospital where I work.
 
Typically, they are frail seniors with dementia and other chronic medical conditions." Read more >
 
About the author: Dr. Brian Goldman is a veteran ER physician and an award-winning medical reporter for CBC Television's The Health Show and The National. Brian has a proven knack for making sense of medical baffelgab. On White Coat, Black Art, he takes listeners past medical bluff and bluster and shows what really goes on at hospitals and clinics. He is the author of The Night Shift and his new book The Power of Kindness: Why Empathy is Essential in Everyday Life.
 

 

Admission of the very elderly to the intensive care unit: family members' perspectives on clinical decision-making from a multicenter cohort study. 
Palliat Med.
Heyland DK, Dodek P, Mehta S, Cook D, Garland A, Stelfox HT, Bagshaw SM, Kutsogiannis DJ, Burns K, Muscedere J, Turgeon AF, Fowler R, Jiang X, Day AG; Canadian Critical Care Trials Group and Canadian Researchers at End of Life Network (CARENET).
2015 Apr.

 

Impact of Goals of Care on Resource Use at End of Life

 

Using a sub-sample from a larger study (NR014856), a team of researchers at Frances Payne Bolton School of Nursing, Case Western Reserve University, sought to exam­ine whether there were differences in resource use at EOL between patients with advanced cancer who identified goals of care focused heavily upon survival versus those who identified goals of care heavily focused on quality of life (QOL).

The larger study used a longitudinal descriptive study design and collected data on patients with a diagno­sis of stage 4 gastrointestinal or lung cancers. Data were collected at University Hospitals Seidman Cancer Center in Cleveland, Ohio, every 3 months until the end of the 15-month study period or patient death.

Subjects were asked at each time point, “Regarding your care, what is most important to you right now?” (Figure). Anchors on the 100-point visual analog scale were QOL and survival, with a value of 50 indicating a goal with equal weight given to both domains. Values greater than 50 indicated a goal of care that focused more on survival than QOL. Continue reading >

Predicting Performance Status 1 Year After Critical Illness in Patients 80 Years or Older: Development of a Multivariable Clinical Prediction Model.
Crit Care Med.
Heyland DK, Stelfox HT, Garland A, Cook D, Dodek P, Kutsogiannis J, Jiang X, Turgeon AF, Day AG; Canadian Critical Care Trials Group and the Canadian Researchers at the End of Life Network.
April 13, 2016 

Fraser Health "Planning for the Future" Team wins Collaboration Award

 

As Fraser Health’s Regional Coordinator for Advance Care Planning, Cari Borenko Hoffman spends much of her time educating and supporting health care providers and community members about the importance of planning for the future. It’s an enormous task, made even more complicated when questions arise about not just health care, but legal and financial planning – topics outside of Fraser Health’s purview. 

A partnership between the Ladner United Church Parish Health Team, Deltassist Family and Community Services Society, Delta Senior’s Planning Team, and Fraser Health has proven that by working together, communities can prepare residents to have these meaningful conversations.

The partnership is a recipient of an Above and Beyond Best Collaboration Award for their work on “Planning for the future: Important information and conversations about medical, legal and financial decision making.”
 
Continue reading >

< Back to Publications

 

End of life care in acute care hospitals in Canada. A quality finish? 
J Palliat Care.
Heyland D, Groll D, Rocker G, Dodek P, Gafni A, Tranmer J, Pichora D, Lazar N, Kutsogiannis J, Shortt S, Lam M, for the Canadian Researchers at the End of Life Network (CARENET).  
Autumn 2005.

When patients and doctors disagree about prognosis

 

As palliative care physicians who frequently discuss goals of care with seriously ill patients and their families, we often get called because the patient/family is “in denial.”

In a common scenario, we are consulted by a medical team where team members want us to make sure the family “gets it” and them makes the “appropriate” decision for a do not resuscitate (DNR) order or for hospice care.

Too often, from the consulting service perspective, the term “denial” is a substitute for “the patient won’t do what we think they should be doing.”

In these cases, our first challenge as clinicians is to understand the patient beliefs that underlie the disagreement, including how the patient obtained them, how those beliefs function in their life and family, and their malleability. Read More>

< Back to Publications

Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously ill hospitalized patients and family members.
Chest.
Heyland D, Frank C, Groll, D, Pichora D, Dodek P, Rocker G, Gafni A for the Canadian Researchers at the End of Life Network (CARENET).   
August 2006.

 

Culturally sensitive communication at the end-of-life in the intensive care unit: A systematic review

The objectives of this systematic review were the following: (i) to describe whether culturally sensitive communication is used by clinicians (nurses and physicians) when communicating with patients and families at the end-of-life in the intensive care unit and (ii) to evaluate the impact of culturally sensitive communication at the end-of-life.

The systematic review question was how is culturally sensitive communication used by clinicians when communicating with patients and families at the end-of-life in the intensive care unit? Read More>

< Back to Publications

What matters the most in end-of-life care: Perceptions of seriously ill patients and their family members.
CMAJ. 
Heyland D, Dodek P, Rocker G, Groll D, Gafni A, Pichora D, Shortt S, Tranmer J, Lazar N, Kutsogiannis J, Lam M, for the Canadian Researchers at the End of Life Network (CARENET).
Feb 28, 2006.

Ambiguity of ‘comfort care’ creates confusion for physicians, patients

The term “comfort care” has generally become synonymous with end-of-life care in today's healthcare environment, but the use of this terminology may have undesirable effects on the wide-scale perception of what is truly detailed in such care. 

In a perspective article published in JAMA Internal Medicine, investigators describe the importance of clarifying the ambiguity associated with “comfort care” in current society.

Read More>

< Back to Publications

CARENET: A resource for researchers in end-of-life care.
Can J Geriatr.
Frank C, Heyland D, Pichora D.
2006.

ACP Decisions is pleased to announce that eighteen of its decision aids focused on end-of-life care have been certified by the Washington State Health Care Authority. ACP Decisions is one of only four organizations in the U.S. to receive certification within the end-of-life care category.

Read More>

TORRANCE, Calif.—Rod Hochman vividly remembers watching his father die the wrong way, laid out by a stroke at age 78, hooked up to a ventilator and an intravenous drip in an ICU, his last hours spent in a hospital. It was the most aggressive care modern medicine could offer, and the family later came to understand that it was unlikely to save him. It was not how he wanted to end his days. Read more>

"A few weeks ago, on my way to see a patient in the hospital, I ran into a cardiologist who I like a lot. We have cared for a few patients together—people whose hearts had failed so severely that he didn’t have anything useful to offer them anymore, and they were transitioned to the palliative care unit, where I work, to die." Read more>

Life support decision making in critical care: Identifying and appraising the qualitative research evidence. 
Critical Care Medicine. 
Giacomini M, Cook D, DeJean D, in collaboration with the Canadian Researchers at the End of Life Network (CARENET).
Apr. 2009.

“Don’t you think he looks comfortable right now?”

We stand quietly at the foot of the bed and watch. The patient lies semisupine in the mechanical bed, intermittently breathing slowly and deeply before longer apneic pauses. Despite the soft groan of the bilevel positive airway pressure machine and the occasional chirps from 4 continuous intravenous drips, he seems settled, arms open, hands unfolded to the fluorescent overhead lighting. Even in this state of unconsciousness, he seems to be preparing to die. Read more>

Discussing prognosis with patients and their families near the end of life: Impact on satisfaction with end of life care.
Open Med. 
Heyland D, Allan E, Rocker G, Dodek P, Pichora D, Gafni A.
June 16th, 2009. 

Dr. Shoshana Ungerleider is bringing together a cross-disciplinary set of minds to reimagine what dying in America looks like today starting with palliative care in the United States. After years of seeing how the system provides less-than-desirable services to patients and their families, Ungerleider extended her career as an internist at one of the best teaching hospitals in the country to focus on awakening a global movement with the End Well Foundation. Read More>

'Living with death': The evolution of the family member's experience of mechanical ventilation.
Critical Care Medicine. 
Sinuff T, Giacomini M, Shaw R, Swinton M, Cook D. for the Canadian Researchers at the End of Life Network (CARENET).  
Jan. 2009.

Many critically ill hospital patients would rather not have aggressive medical interventions, such as CPR, at the end of their lives. But a new study shows that in Canada, their wishes often don't match up with patients' hospital charts.

Read more and listen to the interview>

Satisfaction with end of life care: A longitudinal study of patients and their family caregivers in the last months of life.
J Palliative Care.
Heyland DK, Frank C, Tranmer J, Paul N, Pichora D, Jiang X, Day A, for the Canadian Researchers at the End of Life Network (CARENET).
Winter 2009.

Communication and End-of-Life Care in the Intensive Care Unit: Patient, Family, and Clinician Outcomes

Boyle, Diane K. PhD, RN; Miller, Peggy A. MS, RN; Forbes-Thompson, Sarah A. PhD, RN

Even though good communication among clinicians, patients, and family members is identified as the most important factor in end-of-life care in ICUs, it is the least accomplished.

According to accumulated evidence, communication about end-of-life decisions in ICUs is difficult and flawed. Poor communication leaves clinicians and family members stressed and dissatisfied, as well as patients' wishes neglected.

Conflict and anger both among clinicians and between clinicians and family members also result. Physicians and nurses lack communication skills, an essential element to achieve better outcomes at end of life.

There is an emerging evidence base that proactive, multidisciplinary strategies such as formal and informal family meetings, daily team consensus procedures, palliative care team case finding, and ethics consultation improve communication about end-of-life decisions. Evidence suggests that improving end-of-life communication in ICUs can improve the quality of care by resulting in earlier transition to palliative care for patients who ultimately do not survive and by increasing family and clinician satisfaction.

Both larger, randomized controlled trials and mixed methods designs are needed in future work. In addition, research to improve clinician communication skills and to assess the effects of organizational and unit context and culture on end-of-life outcomes is essential.

Read more >

< Back to Publications

Educating medical residents in end-of-life care: Results of a national survey.
J Palliat Med.
Schroder C, Heyland D, Jiang X, Rocker G, Dodek P, for the Canadian Researchers at the End of Life Network (CARENET).
May 2009.

Defining priorities for improving end-of-life care in Canada.
CMAJ.
Heyland DK, Cook DJ, Rocker GM, Dodek PM, Kutsogiannis DJ, Skrobik Y, Jiang X, Day AG, Cohen SR.
Nov. 9th, 2010.

To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and to identify gaps to improve ACP receptivity, utilization, implementation, and outcomes. Read more

Just ask: discussing goals of care with patients in hospital with serious illness.
CMAJ.
You JJ, Fowler RA, Heyland DK; Canadian Researchers at the End of Life Network (CARENET)
2014.

The Department of Veterans Affairs (VA) is likely the largest provider of health care for LGBT persons in US. However, histories of homophobia, stigma, discrimination, and past military policies have all had a lasting impact on the health of LGBT veterans. Effects can be seen across healthcare needs, disparities, access, and utilization for or by LGBT veterans. Read more.

Enhancing the quality of end-of-life care in Canada.
CMAJ.
Cook D, Rocker G, Heyland DK.
Nov 5, 2013

 

The doctor patient relationship in Singapore is changing.

In decades past, it was typically the doctor who made treatment decisions on behalf of patients, sometimes with input from the patients and/or their families, and sometimes without any input at all. Read more

What do Canadians think of advance care planning? Findings from an online opinion poll.
BMJ Supportive Palliative Care.
Teixeira A, Hanvey L, Tayler, C, Heyland DK et al. 
Oct 4, 2013.

The McGill Quality of Life Questionnaire has been widely used with people with life-threatening illnesses without modification since its publication in 1996. With use, areas for improvement have emerged; therefore, various minor modifications were tested over time.

To revise the McGill Quality of Life Questionnaire (McGill Quality of Life Questionnaire–Revised) while maintaining or improving its psychometric properties and length, keeping it as close as possible to the McGill Quality of Life Questionnaire to enable reasonable comparison with existing McGill Quality of Life Questionnaire literature.

More about the questionnaire

Back to top