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Posts tagged ‘Bernie Pauly’

Death Is a Social Justice Issue

Our first featured article from the latest ANS issue is titled “Death Is a Social Justice Issue: Perspectives on Equity-Informed Palliative Care” by Sheryl Reimer-Kirkham, PhD, RN; Kelli Stajduhar, PhD, RN; Bernie Pauly, PhD, RN; Melissa Giesbrecht, PhD; Ashley Mollison, MA; Ryan McNeil, PhD; and Bruce Wallace, PhD.  While this article is featured it is available for download at no cost! Please read it, then return here to join a discussion around these important ideas!  Here is a message from Dr. Reimer-Kirham about their work:

In this paper, we lay the theoretical groundwork and make the case for equity-informed palliative care.  We draw on the Equitable Access to Care (EAC) study to explore the end-of-life experiences of people who are ‘doubly

Sheryl Reimer-Kirkham

Sheryl Reimer-Kirkham

vulnerable’ – those who are dying and experiencing hardships due to social determinants of health such as poverty, homelessness, racialization and criminalization. Our research emerged out of the distress of health and social service workers who witnessed their clients dying prematurely because they were diagnosed with life-limiting conditions too late, when treatment options were either not available or less effective.

The EAC study seeks to understand barriers to quality end-of-life care and to create recommendations for policies and practices to improve equitable access and enhanced quality of care.  To conduct our research, we observe and interview people experiencing structural vulnerability at the end-of-life, their ‘chosen’ family and service providers, and key decision makers from various service backgrounds. Our study also looks at promising models and practices of end-of-life (EOL) care for homeless people that can be applied in the local context.

Our team is a community-academic partnership which includes the University of Victoria (Institute on Aging &

Kelli Stajduhar

Kelli Stajduhar

Lifelong Health, School of Nursing, and Centre for Addictions Research of BC), Trinity Western University (School of Nursing), BC Centre for Excellence in HIV/AIDS, Palliative Education and Care for the Homeless (PEACH), and the Palliative Outreach Resource Team (PORT). PEACH is a palliative consult/support service for homeless people in Toronto, ON. PORT is a group of service providers who work to improve quality and access to palliative and bereavement services for dying homeless people in Victoria, BC. Our study began in 2014 and we plan to release results by fall 2017.

As a community-academic partnership, it is important to us that we collaborate with our networks to foster

Bernie Pauly

Bernie Pauly

dialogue, raise awareness, and create practical recommendations to bring about social change.  Highlighted in this paper, last year we brought together specialized palliative care services with community health and social service workers to host A PORT in the Storm: A day of education and discussion about equitable access in palliative care. Outcomes from this event included networking, awareness, and greater understanding of services available, and the organizational barriers to providing quality care at EOL.

In this paper, we explore how a social justice lens in palliative care can illuminate how social and structural inequities profoundly shape health, illness, and dying experiences for people who are made particularly vulnerable by a constellation of socio-political, economic, cultural and historical forces.  By offering three exemplars – Leslie, George, and Cliff – we illustrate why an equity-informed approach to palliative care is desperately needed for a nuanced understanding regarding who current palliative care programs are failing.

Recently, our study team wrote an op-ed called Homeless Deserve End-of-Life Care but aren’t getting it to direct attention to the story of a homeless, Indigenous man in our community who was discharged from hospital after surgery with no place to go. Our study and the experience of homeless people at EOL garnered international attention when the Canadian Broadcasting Corporation (CBC)  picked up this story. Dr. Kelli Stajduhar recently spoke to The Walrus Talks Quality of Life audience about the value of palliative care and its lack of availability in Canada.  (see also Acknowledgements noted on manuscript).

Our hope is that our article and this blog increases awareness about the need for equity-informed approaches to palliative care, including prompting discussion around the following questions: What are the experiences of health and social service workers in providing EOL care (both ‘informal’ and specialized) to people experiencing structural vulnerability? What policies and practices have supported quality end-of-life care for this population?




Evidence guiding culturally safe nursing practice

The current ANS featured article titled “Toward Cultural Safety Nurse and Patient Perceptions of Illicit Substance Use in a Hospitalized Setting”  is based on a collaborative project that focuses on cultural safety in health care.  The authors, Bernadette (Bernie) Pauly, PhD, RN; Jane McCall, MSN, RN; Annette J. Browne, PhD, RN; J. Parker, MA and Ashley Mollison, MA shared this background about their work:

Our article describes an ethnographic research project examining the experiences of people who use illicit drugs and nurses who provide care for them in acute care settings. The idea for this research emerged from a recognition that people who are identified as using illicit drugs and facing socio-economic disadvantages often experience stigma when accessing health care services. Nurses working at Insite, Vancouver’s supervised injection site, found that cultural safety helps to mitigate stigma when working with people who use illicit drugs, so this project set out to explore what cultural safety might look like with this population in other settings. Cultural safety was developed in New Zealand to address persistent health inequities experienced by Maori people and has been a strategy to enhance care for people experiencing the negative effects of stigma, racism and other forms of discrimination, and ongoing marginalization.

In exploring the meaning of cultural safety, from the perspectives of people who use illicit drugs and nurses, participants described 3 main conceptualizations of illicit drug use, as 1) individual failings; 2) criminal activity, and 3) a disease of ‘addiction’. They discussed how these intersect to negatively impact access to care, management of pain, and access to of harm reduction supplies.

In relation to illicit drug use, cultural safety can prompt nurses and other healthcare providers about the importance of situating drug use in the history of the criminalization of drug use, and how continued legacies of that criminalization impact the care that people receive, preventing people from accessing health services now and in the future. Creating culturally safe(r) environments involves health care professionals
examining their own values and conceptualizations of drug use, and about people who use drugs, and how that might affect practices and policies in acute care

This project would not have been possible without the leadership and input from a peer advisory committee comprised of members of the Society of Living Illicit Drug Users (SOLID), an organization run by and for people who use(d) illicit drugs. The peer advisory met regularly throughout the project to provide direction on the interview questions, strategies for data collection, and input on research findings. A nurse advisory committee provided parallel leadership and direction to the research process. The advisory groups ensured that the research questions were relevant, that the process of data collection was attentive to needs of participants, and that the research findings were interpreted within an appropriate context of lived experience and practice. Together with the research team, the nurses and peers developed a practical set of recommendations for practice.

The results of the research were presented at two hospital forums where advisory committee members, nurses and managers discussed how research recommendations could be implemented through changes to hospital policy and practice. As a result of the research there have been changes to hospital harm reduction policies and practices. Today, the cultural safety bulletin is being mobilized by SOLID to offer peer-run trainings to front line health and social service providers.

This article is available for download without cost while it is featured on the ANS web site!  Download and read it now!  Then come back here and share your comments – we would be delighted to hear from you!

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