What’s in a name? Why conceptual clarity about “a palliative approach” is important

Guest post by authors Pat Porterfield, Kelli Stajduhar, Rick Sawatzky, and Cara Pearson of iPANEL. A recently published article by the iPANEL team is the focus of this blog post. The goal of this research was to clarify the meaning of a “palliative approach” to healthcare for people who have chronic advancing life-limiting conditions. Read the full article for more information about a palliative approach and prominent care delivery models.

Palliative care … palliative approach … hospice palliative care … end of life care – Phrases and terms often used interchangeably, often misunderstood, and often the cause of extended discussions among those of us interested in the care of people who are living with and dying from serious illnesses.

Since 2011, we’ve been part of a group of British Columbia nurse researchers, clinicians and administrators examining how we could best integrate a “palliative approach” into the care of people with chronic life-limiting illness. This group is iPANEL (Initiative for a Palliative Approach in Nursing: Evidence and Leadership). We recognized that people who were dying from chronic, life-limiting illnesses, such as dementia, frailty, COPD and kidney disease, were not receiving adequate palliative care services. We also recognized that most people with these long-term advancing illnesses need a different type of service. What they need is a palliative approach to care, which can lead to better care planning throughout the course of their illness, before they are recognized as imminently dying.  Proper care planning acknowledges that these individuals will not recover from these illnesses, and that the best care we can give will include clear communication about what they can expect and how we as care providers can meet their needs.

Our research has taken many forms, but at its core is a recently completed knowledge synthesis project and subsequent publication entitled Conceptual Foundations of a Palliative Approach: A Knowledge Synthesis. This paper is open access so that everyone can read it for free.

Since we became involved in this work, we commonly hear, “Why do we need to clarify what a palliative approach is? After all, the World Health Organization (WHO) already defines palliative care as an ‘approach’ which includes ‘life-limiting illness’ and ‘early identification.’ Isn’t that what you mean by a palliative approach?”  We recognize the importance of the World Health Organization’s work in using the term “approach” to indicate that palliative care implies an attitude and manner of care appropriate for life-threatening illness earlier in the illness trajectory. However, this definition does not address all the characteristics inherent in our understanding of a palliative approach.

Based on our analysis of the literature, we propose using the term palliative approach to describe the attitude and “processes” by which the foundational principles and knowledge of palliative care are adopted, adapted, and integrated to improve quality of life and relief of suffering for all those with chronic life-limiting conditions.

A Palliative Approach to Care

  1. Mandates upstream orientation of palliative care principles to meet the needs of patients, residents, clients and families;
  2. Requires adaptation of palliative care knowledge and expertise to different patient populations and their unique disease profiles; and
  3. Is operationalized through contextualization and integration into all healthcare sectors and settings.

As described in more detail in the paper, the work involved in adopting, adapting, and integrating palliative care principles and knowledge requires the expertise of health care providers familiar with these illness trajectories. These health care providers already work within existing systems of chronic care management and are familiar with providing care to patients with life-limiting illnesses. What is key is finding ways to support more effective partnerships between existing health care providers. Improving collaboration between primary care, chronic disease specialists and palliative care services is essential to enacting a palliative approach at clinical and system levels.

One such way to support effective collaboration is a shared understanding of a palliative approach, with conceptual and linguistic clarity. When palliative care is understood as a service, there can be ambiguity in who is responsible for delivering that service. Whereas if a palliative approach is clearly the philosophy that everyone uses and is understood to be delivered by a wide circle of care providers, discussion can more effectively focus on patient and family needs, with each health care professional doing what they can to meet those needs. Consider the following brief scenarios that illustrate this difference.

Care planning discussions for “Mrs S,” who is an 83-year-old patient recently diagnosed with end-stage renal failure:

 

Scenario One:  Using “palliative care” as the descriptor for the care required

Nephrology clinician: “This lady needs palliative care” (intent: as in philosophy or approach to care, acknowledging that the patient has needs related to her life-limiting illness).

Palliative care clinician (PCC): “She isn’t ready for palliative care right now; she really needs a discussion with you” (intent: “not ready” is in reference to a palliative care specialist service; the PCC supports that the patient needs information about her illness progression and options, but feels this information is best provided by nephrology and wishes to ward off what would be an inappropriate referral) “and she certainly isn’t eligible yet” (intent: referring to palliative care benefits which are intended for those patients within the last six months of life; additionally, the phrase “not eligible” adds to the confusion about what palliative care is).

Clearly there is lots of room for misinterpretation of what is meant by “palliative care.” The back and forth between using “palliative care” as a philosophy and as specialized services, often with eligibility attached to those services, is evident in the literature. This scenario demonstrates the lack of clarity.

 

Scenario Two: Using “palliative approach” as the descriptor for the care required

Nephrology clinician: “Mrs S needs a palliative approach” (intent: palliative approach as a philosophy or approach to care, acknowledging that patient has needs related to her life-limiting illness).

Palliative care clinician: “I agree. What do you think are her most immediate needs?” (there is no ambiguity; it is clear that the intent is for the nephrology team to assess the patient’s needs).

Nephrology clinician: “We need to talk with her about how her illness may progress and let her know what her renal care options are” (intent: acknowledges the information about illness trajectory and treatment is best provided by nephrology).

Palliative care clinician: “Sounds good. Let us know if we can help you provide care as her illness progresses” (intent: the specialized palliative care clinician is available for support, but ongoing care will be provided by the renal team).

Although this second scenario is obviously idealized, the term palliative approach contributes to clarity of focus, which is the evolving needs of the person and an approach to her care based on partnerships.  In fact, partnerships were identified by our knowledge synthesis as being enablers for integrating a palliative approach.

 

What are your thoughts?

What do you think are the implications when we use terms like palliative care and palliative approach interchangably, or when we don’t have a clear understanding of what these terms mean?  Do you see possibilities to improve care through refining our understanding and use of the term palliative approach? Do you have ideas for integrating a palliative approach in your care setting?

 

iPANEL is a group of BC nursing researchers, practitioners and administrators that formally came together in 2011, with funding from the Michael Smith Foundation for Health Research. The iPANEL team is committed to improving care for people with chronic advancing life-limiting conditions, and their family members, by furthering the integration of a palliative approach throughout the British Columbia health care system.

iPanel – Conceptual foundations of a palliative approach: a knowledge synthesis

Over the past few years I have cited the iPANEL research (Initiative for a Palliative Approach in Nursing: Evidence and Leadership) as one of the most important research projects in hospice and palliative care today.

Today the iPANEL team announced the publication of their latest article – Conceptual foundations of a palliative approach: a knowledge synthesisThe article can be found here.

Please distribute this article widely! This is an open access journal, so SEND people to the LINK instead of sending the PDF. The number of hits impacts the ranking of the article on the journal’s website!

If you are citing the article, Rick has provided the citation to save you the time and effort of figuring that out!
Sawatzky, R., Porterfield, P., Lee, J., Dixon, D., Lounsbury, K., Pesut, B., Roberts, D., Tayler, C., Voth, J., & Stajduhar, K. (2016). Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliative Care, 15(5). doi: 10.1186/s1290401600769. Available: http://www.biomedcentral.com/1472-684X/15/5

Congratulations to the iPANEL team!