Creating A Teachable Moment for Patients In Palliative Care and EOL

Wow is all I can say to a study published in AMA Internal Medicine titled “Early Palliative Care in Advanced Lung Cancer” by Yoong, Park, Greer, Jackson, et al. You can find the abstract here. (Sorry but it’s behind a pay wall.) This article should be free. The data and the recommendations it presents is a crucial component in moving more patients toward a better understanding of palliative care. Limiting distribution to only healthcare professionals (HPC) limits the number of patients and their families from understanding its value and benefit.

This study extends the work of Jennifer S. Temel, MD whose article “Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer” in the August 10, 2010 NEJM offered a very clear picture of how ” early palliative care led to significant improvements in both quality of life and mood.”   Yoong stated objectives were: 1. Identify key elements of early palliative care (PC) 2. Explore the timing of key elements, and 3. Compare the content of the PC physician (PCP) and oncologic visit. They were looking for the important elements of the clinical visit with the PCP that improved outcomes. This study found that early PCP visits focused on symptom management, strengthening coping, and prognostic awareness. While later and more crucial visits have a distinct set of features for PCP involvement and enables to oncologist to focus on cancer treatment and management.

My enthusiasm about this article and its data is centered on the fact that communications, relationships, and rapport were early elements established between PCP and patient. These elements I believe drove the results. Communications, relationships, and rapport are the cornerstones of learning and reflection. Learning and reflection are critical to changing behavior. In addition communications, relationships, and rapport establish a baseline for the more difficult discussions such as end of life (EOL), resuscitation preference, hospice, and change in treatment.

The authors noted that the PCP visits centered on psychosocial aspects of worsening disease and how that effects both patient and family while the oncologist focused more on the disease, its treatment, and management. The authors further noted that they observed the content of early to later PCP visits changed to match the disease trajectory and did not follow a checklist. This seems to match the reality that guidelines in generally are not applied to all patients. And I see it as pointing to a path in managing palliative care specific to patient needs. We all face death and dying differently not one guideline will serve all.

One data set that the authors note is that the PC clinicians focused on establishing a relationship, which leads to identifying needs and preferences for information (knowledge transfer) early. Later in the disease trajectory when treatment was failing and the disease progressing and discussion of EOL was initiated that relationship was drawn upon. Further the authors noted there was not a presumed discussion of EOL care or hospice when the PCP was brought into the clinical picture. It does not support the argument that the PCP early on will bring EOL and hospice up.

Early visits to the PCP, patients and family and the establishment of a relationship drives continuity of care and greater familiarity with the issues and needs of patient and family on both sides. This improves the quality and reflection surrounding later and more complex disease issues such as change in treatment, EOL, and hospice.

This study is within my area of interest palliation, hospice, caregiving, and adult learning. This study presents a place and time where the application of adult learning will drive understanding and knowledge transfer. With the reality of the patient status and the knowledge the PCP has there exists a ready-made value exchange; patients are seeking solutions to problems and the PCP can directly address that. But to be the most effective the PCP needs to understand what are the patient and family gaps in knowledge. What can be done to improve that relationship based on knowledge transfer, strengthen it, make it work better to produce more valuable outcomes?

First, patients as all adults will learn only when they are seeking solutions to problems they want to solve. Patients who are entering palliative care are facing the most difficult problems in life but many may be unable to characterize or articulate those problems. What can be done to aid them in such a way that they can better and more quickly identify problems/needs to the PCP or oncologist? In addition what can be done to aid the PCP or oncologist to improve his/her knowledge in order to maximize the benefit of communications and rapport to create a true value exchange between patient and physician? The authors are looking to at an additional study to identify ‘salient elements of clinical encounters and nonverbal communication that occurs between patient and PCP physician. If we understand the problems these patients are seeking to solve earlier and more clearly we can better manage them and match them to the trajectory of the disease. We may in fact be able to circumvent the need to monitor nonverbal communications, as a tool to ferret out knowledge about patient needs.

Creating a simple and short inventory that the patient and the caregivers complete independently at the first visit would serve the long-term needs of both. And this type of learning is bidirectional were both PCP and patient exchange knowledge that creates reflection on action. I would recommend creating inventory questions using the authors Key Elements of Palliative Care Visits: Relationship and rapport building, Addressing symptoms, Addressing coping, Establishing illness understanding, Discussing cancer treatments, EOL planning, and Engaging family members.

This inventory/needs assessment tool first and foremost identifies problems the patient and family are seeking solutions to. Once it is completed the difference between patient and family would be determined first. These differences are gaps that may or may not need to be closed but clearly need to note and managed because of the dissonance it may create. Answers to the questions by patient will be used to focus discussion and what information to bring to the table and how that information changes behavior and attitude. Keep in mind the completion of this inventory goes a long way to opening learning receptors for the patient as well as the PCP. This ‘needs assessment’ serves as mile markers along the disease trajectory and can be easily updated.

Yoong, Park, Greer, Jackson, et al. have served up proof that palliative care works, that creating rapport and a relationship with palliative patients offers benefits and outcomes that improve quality of life, EOL planning, and the ability of patient and family to face decisions. Improving the ability of the both the patient and the PCP physician to determine needs and problems will go a long way to improve palliative care and EOL decisions. We have all the clinical tools in place what we to do now is create those tools that will allow for higher quality communications and rapport during this darkest of times for any human. 

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