Caring for those facing life-limiting illness
September 28, 2020
Canada Research Chair in Health, Ethics and Diversity (2010–2020)
Principal’s Research Chair in Palliative and End-of-life Care for Frail and Rural Adult Populations
Health and Social Development
Okanagan (Kelowna, BC)
PhD, Nursing, UBC
BScN, University of Victoria
Diploma, Nursing, British Columbia Institute of Technology
“I saw first-hand how compassionate care can positively affect the dying experience. One of my research goals is to provide nurses with the best and most appropriate care strategies during this circumstance.”
“HONESTLY, I WOULDN’T WANT TO DO ANYTHING ELSE,” explains Barbara Pesut, referring to her end-of-life research. But Pesut’s dedication and commitment goes far beyond this simple acknowledgement. For more than three decades, the professor in UBC Okanagan’s School of Nursing has been speaking up for those who go quietly into the night.
Pesut — a Canada Research Chair in Health, Ethics and Diversity from 2010 to 2020 and a Principal’s Research Chair in Palliative and End-of-life Care for Frail and Rural Adult Populations — began her nursing career at the Bone Marrow Transplant Unit at BC Children’s Hospital. It was here that she first observed patients and families going through grief and bereavement.
“I saw first-hand how compassionate care can positively affect the dying experience,” she explains. “This care usually falls on nurses, since they’re the frontline caregivers. One of my research goals is to provide nurses with the best and most appropriate care strategies during this circumstance.”
Care, in this case, encompasses a wide range of activities aimed at improving the quality of life for adults with life-limiting chronic illnesses, both during their illness and in death. As part of her research, Pesut aims to implement programs that will support older adults ‘age-in-place’ in their home or community, rather than at a facility. She also wants to determine how health care workers can help to relieve suffering at end-of-life.
Both cases involve moral, practical and clinical implications — which the COVID-19 pandemic has brought to the forefront.
“For the first time in decades, the average Canadian is thinking about end-of-life,” says Pesut. “Death and dying have become front page headlines and are part of our daily conversations.”
She adds that more than ever, communities, family members and frontline workers need support in caring for those who are dying.
“Most medical and nursing education is focused around acute care situations, like trauma or cardiac issues,” Pesut says, adding that this has been the traditional approach to medical teaching.
She suggests there also needs to be more end-of-life care teachings, such as how suffering can be alleviated and how to support grieving families.
“We need to think about how death impacts students, who see themselves as healers.”
Pesut says she would begin by declassifying dying and living as separate states. “They are inter-connected and on a continuum. Good end-of-life care begins well before an individual is on a definite path to dying.”
BRINGING IN PALLIATIVE CARE
While most people think of palliative care in relation to end-of-life care, it also involves caring for those who face life-limiting illness and addressing issues that cause suffering. The purpose of palliative care is to assure the patient — and those involved in their life — experiences optimal quality of life. This involves care across the continuum of the patient’s illness and in all dimensions of life, including symptom management and social, spiritual and psychological needs.
Pesut believes that ensuring the right type of care is available at the right time is a priority.
“The nature of dying has changed,” says Pesut. “We’ve been successful in prolonging life — we’ve hit it out of the park, actually.”
She adds, however, that in some cases living longer isn’t always better, especially as chronic illnesses accumulate alongside the candles on birthday cakes. The burden of these new illnesses and lack of nearby family supports may lead to disengagement from life and loneliness.
In response, Pesut and fellow researcher Wendy Duggleby from the University of Alberta developed a resource to help support those in need of assistance. Called Nav-CARE, the service introduces older adults to trained volunteers who can help connect individuals to resources available in their communities while providing emotional support and companionship.
Thanks to Nav-CARE, 27 communities across Canada have implemented programs to serve older persons living at home with serious illness. Community members young and old are able to share and connect in ways that improve the quality of life of both.
Staying at home has become especially relevant with the emergence of COVID-19. Instead of visiting houses, Nav-CARE volunteers are now reaching out via phone or the computer.
Pesut, along with UBCO interdisciplinary master’s student Paxton Bruce, has started a new research project to see how this new dynamic is working.
Pesut says that many seniors are coping well on their own and benefitting from some of the COVID-19 resources, such as online grocery shopping and virtual physician visits.
But Bruce adds that both the volunteers and clients miss the in-person get-togethers.
“Although everyone is grateful to be healthy, many agree it’s hard to have meaningful conversations on the phone.”
Pesut and Bruce hope to have a better understanding of what is working and how to improve what isn’t during the trying times of social and physical distancing.
Regardless of how it’s done, spending time with individuals who are at the end of their lives is grounding, according to Pesut.
“They remind us that we’re all in this together.”
MAiD: A NEW OPTION
Master’s alumna Madeleine Greig agrees with the importance of communication between caregivers and their communities.
With supervision from Pesut, Greig explored how nurses are delivering care in multi-cultural and evolving situations. One of the studies described the challenges nurses face when helping to deliver medical assistance in dying (MAiD).
“As a society, we’re at an interesting point in time where people are talking more about end-of-life and death,” says Greig. “It was interesting to learn about how people approach this topic.”
After she completed her master’s degree Greig returned to clinical practice at the BC Children’s Hospital Oncology, Hematology & Bone Marrow Transplant Unit, where Pesut also practiced. Greig says her graduate training enhanced her ability to critically appraise clinical situations and to appreciate ethical complexities.
“I’m grateful to Dr. Pesut for this experience,” says Greig, who is still involved with some of the research.
Pesut and her team at UBCO’s Health, Ethics and Diversity Lab have been studying the impact of MAiD on nursing since its legalization in 2016.
“As of 2019, 13,946 Canadians have received MAiD, yet we know little about how the law is being implemented across the country,” says Pesut. “Our previous studies suggest there’s a variation in policy and practice. We’ve found that MAiD is influencing end-of-life decisions, including pain management and how other strategies to reduce suffering are being used.”
Pesut wants to better understand how individuals are navigating palliative care, with MAiD as an option. Thanks to funding from the Canadian Institutes of Health Research (CIHR) some of this research is already underway.
“There’s a lot of moral distress when people suffer. Getting everyone on the same page, from heath care providers to family members, is key.”
Greig looks forward to the findings. “I’d like to see greater understanding of the complexity of end-of-life care decisions. For example, one’s decision to pursue MAiD, or a healthcare provider’s decision not to provide MAiD, is informed not only by their personal autonomy, but also by their family and economic situations, personal or professional experiences and many other factors.”
With an aging population that has been significantly impacted by the COVID-19 pandemic, Pesut says there will be more demand on healthcare providers.
For example, during peak distancing restrictions, family members couldn’t visit their ailing relatives in care homes and health care facilities; providing emotional support has rested on the shoulder of frontline workers.
“We want to continue providing good care, but to do it well,” says Pesut. “This becomes harder during times of crises. We’re hopeful that a better understanding of what the caregiver and the patient requires will facilitate this.”
For Pesut, supporting patients, families and health care professionals has been — and continues to be — meaningful.
“It’s a privilege to accompany individuals on their final paths. In a world that is concrete, this remains a moment of mystery.”