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Posts tagged ‘palliative care’

Lee Geropalliative Caring Model


The current ANS featured article comes with Continuing Education, and addresses one of the most pressing, and important challenges in nursing – end-of-life care.  The article is titled “Lee Geropalliative Caring Model: A Situation-Specific Theory for Older Adults,” authored by Susan M. Lee, PhD, RN, NP-C, ACHPN, FAAN.  The article is available to download at no cost while it is featured.  Here is a message from Dr Lee about her work:

As a nurse scientist at Massachusetts General Hospital, my nurse colleagues taught me that they face daily challenges with aggressive end-of-life treatments, particularly among older adults, that do not make a difference.  In fact, the treatments that nurses are called upon to deliver caused more suffering. They looked for direction, language, frameworks that would give them a more credible voice on behalf of patients and families. With HRSA funding, we were able to bring novel education in ethics, geropalliative care, and evidence-based practice that helped to build moral courage and knowledge.  Ultimately, these programs and their extraordinary faculty, helped them to be more effective in the murky crossroads of humans and healthcare.

One education program, AgeWISE, was disseminated nationally to determine its transferability to nurses in other hospitals. It yielded similar outcomes among rural and urban nurses. Universally, nurses want guidance. The model presented in ANS this month is a synthesis of research, ANA standards, ethics, and nursing theory that can help nurses focus on what is most important. These are tough situations that are fraught with emotion, competing values, power imbalances, and ego. Even in situations where nurses cannot change the plan of care, the model reminds nurses that there are are almost limitless opportunities to make a difference to patients and families by comforting body/mind/spirit and helping families transition to a new reality.

Theory-guided practice is more important than ever. It is intimately linked to our disciplinary values. Situation-specific theories can help nurses navigate situations that are difficult to sort out. I welcome conversation at susan.lee@umb.edu

 

 

End of Life Care: An Emerging Praxis


The latest ANS featured article from the current issue focused on Palliative Care is titled: “What End-of-Life Care Needs Now: An Emerging Praxis of the Sacred and Subtle” by William Rosa, MS, RN, LMT, AHN-BC, AGPCNP-BC, CCRN-CMC and Tarron Estes, BA.  We invite you to download the article at no charge while it is featured, and return here to offer our responses for discussion.  Here is a message from the author about the work behind the article:

billy-rosa

William Rosa

As the tsunami of aging population grows, and medical technical care alone misses the heart of caring, so does the cry to “Occupy Death”, to create care and healing at end of life and “Restore Death to its Sacred Place in the Beauty, Mystery, and Celebration of Life”. It is no longer enough to expect death with dignity; we must strive toward evolving human-centered care. It is not sufficient to ‘do no harm’; we must deliberately create healing environments guided by the spiritual autonomy of the dying one.

tarron-estes2

Tarron Estes

The wonderful news is this: As this cry grows to restore sacred, comforting care to our loved ones during their final months, weeks, and days of life, there is an equivalent groundswell of desire to serve, and a growing numbers of end of life doulas rising to meet the needs of those nearing death. This is the premise and guiding force behind our work.

Decision Making at the End of Life


Our latest featured article is “Decision Making Among Older Adults at the End of Life: A Theoretical Perspective” by Rafael D. Romo, PhD, RN, PHN; Carol S. Dawson-Rose, PhD, RN, FAAN; Ann M. Mayo, DNSc, RN, FAAN; and Margaret I. Wallhagen, PhD, GNP-BC, FGSA, AGSF, FAAN. The article is available for no-cost download while it is featured, so I encourage you to visit the website, read the article, and return here to add your comments about this work!  Dr. Romo shared this background information about his work for ANS readers:

We are honored to have our manuscript has been selected as an Editor’s Pick. This work has special meaning for me (the first author) as it is the culmination of a long journey, one that began with my mother’s death in 2000, led to my career as a nurse, and on to a PhD. Through her death (and my father’s death that occurred while I was working on my

Rafael Romo

Rafael Romo

dissertation), I saw first-hand how the process in which decisions are made is at least, if not more, important as the choices themselves. As clinicians, however, we often find ourselves perplexed by patients’ decision making.

Anticipating and predicting patient decision making would help clinicians who are responsible for supporting and guiding patients through the process, which at times may feel like gazing into a proverbial crystal ball. In my PhD program I began to look at different frameworks that exist to explain, if not predict, decision outcomes among older adults, particularly at the end of life. Prospect theory1 is one important theory that attempts to explain decision making, though in the area of economics. Not only is the original paper one of the most frequently cited papers ever published,2 but the theory has been rigorously tested through numerous studies in a wide variety of fields.

I became interested in prospect theory because it has emerged as a potential framework in healthcare decisions and shows great promise. However, I was struck by one aspect to the existing healthcare research: how the commodity is determined. This commodity is a continuum on which a choice can be measured as a gain or a loss. In economics, the commodity has generally been a purely monetary measure. This is easily measured and constructed as everyone has a sense of what $100 is, even if it is more or less important based on one’s financial situation. In healthcare, the commodity has been measured not so much from patients’ perspectives but from an objective clinical criterion of health. In this study we found that participants’ subjective perceptions of health were markedly different than those determine by traditional clinical measures. While clinicians may use disability or comorbidity as a commodity on which to value choices that is indeed objective, participants were determining their health differently. Not only that, they were trying to value choices on two competing criteria: their desire to live as long as possible and their hope to maintain a high quality of life.

By using prospect theory as an a priori framework in this analysis, we bring important innovations to our understanding of the theory as it is used in healthcare. First, we chose to look at commodities of health status and prognosis as the participants defined them. Thus, rather than using their clinical status and prognosis – which was poor for all the participants – we relied on their personal perceptions as this is the point of reference from which they make decisions. Second, we examined how these two commodities were being utilized together, as it became apparent our participants were valuing choices on both. Even those who felt they were in the best of health didn’t make choices solely on that criterion; rather, they still considered how long they felt they had to live. Likewise, those who felt they had a very short prognosis still “wanted a chance,” as one participant put it. What we discovered is that participants were trying to achieve a delicate balance between the two and that using multiple criteria appears to become more and more important as ones health declined. As they approach the end of life, they are not willing to sacrifice quality of life completely to live as long as possible. Instead, they want a happy medium. This desire to use two commodities seems unique to end-of-life decisions and was not fully addressed by prospect theory.

Is theory needed to understand decision making at this specific time of life? We argue yes. Theory is important both to clinical practice and research. Because clinicians are called upon to resolve the discordant views patients may have of both their health and prognosis, they greatly benefit from understanding this important balancing act. Clinics need to help patients navigate through the complex choices around end-of-life care. While “correcting” patients’ subjective self-assessments may seem like taking away hope, patients cannot make the value-based decisions they say are important without fully understanding the true nature of their situations. Our participants understood this and looked to providers to guide them – and in many cases, to simply make decisions for them.

Besides its value for clinicians and patients, theory plays an important role from the research perspective, as it helps us identify what needs to be studied, and by extension, what interventions may be helpful. Theory also helps us determine where interventions can be applied. Despite all the research that has been done in end-of-life decision making, older adults frequently continue to receive care that is \inconsistent with long-held views, so we continue to have a weak understanding of how older adults are making these choices. In this paper we propose an extended view of prospect theory that can be used to better frame decision making at this unique and challenging time of life. We do not propose this extension as the definitive statement on theory related to end-of-life decision making. We cannot yet offer ways to test and validate our perspective. Rather, we seek to start a dialog that will lead to new and innovative thinking in end-of-life decision making, particularly when the decisions transition from choices about what one would want in an abstract future to what one does want in a concrete reality of today. There are, and will be, detractors of our perspective of prospect theory. We welcome this and hope our manuscript initiates a long, vibrant conversation that will indeed push the envelope and prompt further research that enables us to ensure older adults at the end of life receive high-quality care that is consistent with their own values and goals at the end of life.

  1. Kahneman D, Tversky A. Prospect theory: an analysis of decision under risk. 1979;47(2):263-292.
  2. Wu G, Zhang J, Gonzalez R. Decision under risk. In: Koehler DJ, Harvey N, eds. Blackwell Handbook of Judgment and Decision Making. Malden, MA: Blackwell Publishing; 2004: 399-423.

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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?

 

 

 

New ANS Topics: “Palliative Care” and “Open Topic”


new1With the beginning of a new year, we have a big announcement!  First we have added a new topic to the usual line-up of issue topics – Palliative Care for ANS 39:3 with a manuscript submission date of January 15, 2016.  In addition, we are introducing the “Open Topic,” which makes it possible to submit your manuscript at any time!

During the manuscript submission process, if you select “Open Topic” on the list of future issue topics, your manuscript will be entered into the peer review system, which should be completed within about 8 weeks of submission.  Once your manuscript has been favorably reviewed and accepted for publication, it will be scheduled for the next available issue.  ANS issues will still include manuscripts that are focused on the scheduled issue topic, but will also include “Open Topic” articles that generally address the purposes of ANS, which are to contribute to the development of nursing science and to promote the application of emerging theories and research findings to practice.

Rural Nursing and Palliative Care


This “Editor’s Pick” article describes an analysis of two studies that examine nursing palliative care in rural settings.  The authors (Barbara Pesut, PhD, RN; Barbara McLeod, MSN, BSN, RN; Rachelle Hole, PhD, MSW; Miranda Dalhuisen, BSN, RN) explain how the findings of these studies inform nursing practice in palliative care, and the ways in which the rural context shapes nursing practice. Their analysis provides insight into the ways in which nursing palliative care improves quality of life.  Dr. Pesut described their project as follows:

This article was birthed out of the Initiative for a Palliative Approach in Nursing: Education and Leadership, more commonly known as iPANEL.

“Research for nurses by nurses” is the motto for iPANEL.  A population aging with multiple chronic health conditions provides some important challenges for nurses, challenges that require both evidence and leadership. Research conducted by members of this team have indicated that a failure to identify and support those who are dying may have adverse consequences including poor symptom management, lack of advance

Barbara McLeod (L) and Barbara Pesut (R)

care planning and failure to attend to important psychosocial and spiritual issues. These issues are particularly relevant for nurses working in non specialized palliative settings such as acute medical units, residential care and home health.

iPANEL is a unique team, funded by the Michael Smith Foundation for Health Research, of researchers, clinicians, administrators and policy makers whose goal it is to integrate a palliative approach into the care of those living with life limiting chronic illness.  A palliative approach takes the supportive principles of palliative care and applies them in an upstream approach, recognizing that although there is a role for specialized palliative care, a palliative approach can be used by all nurses in all contexts to improve the care of the dying. A palliative approach begins by recognizing that a person with an advancing chronic illness may indeed be on a dying trajectory and then having sensitive and ongoing conversations around the goals of care.

This particular project arose out of my (Barb Pesut’s) interest in rural palliative care. Having done extensive ethnographic work examining palliative care in rural areas I was struck by how the rural context influenced

Rachelle Hole (L), Miranda Dalhuisen (R)

nursing work at end of life. I observed how policies and programs generated in urban areas had unintended consequences for nurses. For example, nurses in rural areas work outside of hours and scopes of practice to ensure that their neighbours and friends are well cared for. And yet, this may put them in difficult situations if they are not supported by administrators, if they feel less than competent in the care they are being asked to provide, or if the burden of care becomes too great. In the context of my research I heard many nurses talk about wanting more of the benefits of specialized palliative teams. And yet, I also observed a high degree of expertise and commitment in these nurses as they cared for palliative individuals. It made me wonder about the concept of specialty practice, and where it served nursing well…and not so well. Thus, rural nursing work became an important context in which to look at a palliative approach which seeks to apply the principles of palliative care within generalist contexts – the rural context became an important “living laboratory”. It also became an opportunity to deepen understandings of what rural family caregivers need most from nurses.

Barb Pesut and Barbara McLeod are academic/practice partners leading iPANEL on how to better understand how to educate nurses for a palliative approach. Rachelle Hole is a colleague from social work who brought her expertise in qualitative analysis and social systems to help us think outside of our ‘nursing lens’ as we analyzed the data. Miranda Dalhuisen is a palliative nurse and research coordinator – those invaluable partners who make our programs of research doable.

Visit the ANS web site today to download a free copy of this very informative and interesting article!

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