Showing posts with label quality. Show all posts
Showing posts with label quality. Show all posts
Monday, October 23, 2017
It seems everywhere a person turns, there’s nonstop discourse regarding healthcare quality, particularly the relationship of meeting quality metrics to demonstrating lower costs and higher value. As palliative care further immerses itself into usual healthcare delivery, it behooves our workforce to adeptly apply quality improvement skills to translate our sense of “what is right” into the usual practice of “what is done.” Meeting these demands takes skills and practice, rooted in an evolving evidence base around quality improvement science.
It may confuse some to hear that quality improvement is derived from science. For some, quality improvement is what you call things when there’s not grant money, not a protocol or consent, the project is not publishable or meaty enough to face the feedback or scrutiny of your peers, or when there’s a high likelihood of failure. Quality improvement and “pilot” study can sometimes seem synonymous, and it’s certainly the former and not the latter when results are negative or there’s “more to learn.”
In fact, quality improvement is just as time and resource intensive as pure research, a reflection of rigor that started from the very beginning. The formative years of quality improvement science originated from the factory setting, where observers painstakingly monitored outcomes at the individual and systems level, quantified opportunities for improvement at the outcome (number of widgets) side, and changed how products are made through incentives and modifications to the environment. The origin of the term the “Hawthorne Effect” comes from just such study.
In the 1920’s, the Hawthorne Works, a telephone products manufacturing plant just outside of Chicago, commissioned investigators to experiment how to increase productivity among assembly line workers. The studies continued on for almost a decade, with small changes in lighting (brighter lighting led to more productivity), changes in cleanliness of facilities, and moving work stations around, all leading to small, time-limited upticks in production. In the end, the investigators concluded that the changes in production were ultimately more a result of the workers knowing their production numbers were being observed, than the actual interventions themselves. Though different than what the investigators had originally thought, the Effect is a powerful tool used today to motivate change. The Hawthorne Effect is why highway signs that announce the monitoring of speed by an increased police presence and overhead aircraft reflectively lead to drivers slowing down. Knowing you’re being watched changes your behavior.
From the early part of the 20th century moving forward, a robust science regarding process control, change management, and behavior change built upon the early lessons from the Hawthorne factory. We now have approaches like Failure Mode and Effects Analysis (FMEA) that try to anticipate errors or understand when future breakdowns of the system will occur. Much of this is built upon knowledge that comes from the fields of human factors engineering and industrial engineering, far away from the settings where healthcare is delivered. We also discuss the concept of “high reliability organizations” that anticipate and address opportunities for improvement within increasingly complex environments. It’s the idea that healthcare could become like nuclear power plants and the airline industry; extraordinarily rare errors, that when they occur, are industry-wide learning events. Getting there involves a focus on quality improvement science that is no less robust or meticulous than generating our evidence through clinical trials and the like. And importantly, palliative care through its entrenched ethos and culture around shaping the system to maximize patient-derived wishes, can lead the way in getting there.
To get a taste of quality improvement and its implementation in palliative care, my colleagues and I recently published an article “Quality Improvement Pearls for the Palliative Care and Hospice Professional” which the publisher of the Journal of Pain and Symptom Management has made available for complimentary download for the next few weeks.
Also, there are webinar-based opportunities to learn more about the quickly-evolving environment in palliative care quality. For example, the community-based palliative care quality improvement collaborative I co-chair with AAHPM President Janet Bull, the Global Palliative Care Quality Alliance, is hosting its Third Annual Quality Matters in Palliative Care Conference.
This free, virtual, webinar-based, half-day conference will offer complimentary CME/CNE and feature speakers covering topics related to principles of quality measurement, population health and palliative care, and what CAPC, AAHPM, and HPNA are doing to further the quality agenda in our field. The conference is this Thursday, October 26th in the afternoon. Please register at www.gpcqa.org/qmc. Even if you can’t attend live, please register to receive a copy of the slides and a recording of the presentations.
Arif Kamal MD, MBA, MHS is an Associate Professor of Medicine and Business Administration at Duke University and Physician Quality and Outcomes Officer of the Duke Cancer Institute. He is the father of two beautiful children and has learned (as the younger one is 6 months old) that sleep is a precious, precious thing and should be appreciated whenever (if ever) it occurs.
Monday, October 23, 2017
Monday, September 25, 2017
by Christian Sinclair
In 2003, I began my hospice and palliative medicine (HPM) fellowship in Winston-Salem, NC. I was a solo fellow in a new program, and as luck would have it, I had loads of time to dedicate myself to learning. Since my wife, Kelly, was beginning her pediatric emergency medicine fellowship in Kansas City at the same time, I only had my dog and my fellowship to worry about. I always enjoyed reading articles and imagined how it would apply in my own practice. But when it came down to it, I was never really able to implement much of what I was reading, let alone have the numbers to benchmark against the research.
Fast forward to Spring of 2016. With years of experience across multiple care settings, I finally had an opportunity to implement research tools into everyday clinical practice by using the Edmonton Symptom Assessment Scale (ESAS) in each visit and tracking how patients do over time. I had used the ESAS in a few visits over the years, but could never seem to use it reliably at every visit with every patient.
At KU, we have been using a modified ESAS (with Mild, Moderate Severe) on the inpatient side for a long time, but never the numbers-based ESAS that would be most applicable to research. In practice, my symptom assessments were always driven more by the narrative of the patient, winding indirectly as the patient told their story. I never pressed hard on getting the mild, moderate, severe directly from the patients mouth, but would interpret their story into the scale and document it. Eventually I would get a comprehensive view of symptoms and make a good clinical plan, but I was never going to be able to use that to demonstrate quality nor publish research.
Even admitting this publicly, has taken me some time to do. I figured that everybody was already getting patient-reported outcomes. Frankly, it feels kind of embarrassing to admit. But as I talked to more people, I realized that other HPM clinicians were also not able to apply tools like the ESAS universally. Sure they might get few numbers or severity scores, but to do that at EVERY visit and for EVERY patient, that takes more than just clinician will. It takes a system-based approach to change. And that is not easy.
So in 2016, I talked with the outpatient nurse navigators, Amy and Wendy, and I asked them to help make sure that EVERY patient at EVERY visit was getting an ESAS form and that we were documenting it in the chart. They were both game, which I look back on and count my blessings. In all my previous attempts, when moving from research to implementation that culture change step always worked for a week or two and then regressed to the baseline. Someone gets too busy, or behind and then the standardized thing you are trying to do feels like 'extra work' for no good reason.
To help ensure our success, we made it a focus to talk about the ESAS at the beginning of the clinic day, in between patients and a debrief at the end of clinic. At first, our language was probably inelegant as we introduced the ESAS concept. When people rebelled against 'one more form' or 'hating those damn numbers', we initially backed down, but we persisted and it paid off, because we refined our language and we discovered how to overcome the hesitation of our patients. We helped our patients see the ESAS numbers as a demonstration of their voice and experience. After one interesting conversation with a patient, we began to call these numbers 'our palliative care labs' because 'no blood draw is going to tell me that your nausea was awful last night.'
It took a while but we also recognized that just 'getting the numbers' was not enough. Going back to get these numbers after the visit was over and the plan was made was showing the patients that the symptoms were not necessarily driving the plan. So we adjusted and worked to make sure the ESAS was one of the first things we discussed with the patient, which in turn became the spine of the visit and therefore drove the plan.
Once we began to get consecutive visits with ESAS scores, we were able to show the patients their numbers over time. The feedback was tremendous in demonstrating that we cared about their symptom experience, and as we have become more facile in applying the ESAS we have noticed the objections fall greatly.
And now we have lots of ESAS numbers over lots of visits, but (and this is a BIG BUT) they were all buried in the narrative/free text part of the chart. So we needed to find a way to get this data exported from the Electronic Health Record. I'll share how we did that in part two tomorrow, because when I tried to figure out how to accomplish that, there was no guidance online I found helpful. My hope is that these stories of my clinical transformation from research wanna-be to providing the founding blocks of research and quality improvement may help someone else see that it is possible.
If you want to join in the conversation, this Wednesday we will be hosting the September #hpm Tweet Chat on the topic of "Moving from Research to Implementation to Research in HPM." #hpm Tweet Chats are held on the last Wednesday of the month at 9p ET/6p PT. Sign up on hpmchat.org to be updated of the monthly topic.
Christian Sinclair, MD, FAAHPM is immediate past president of AAHPM, editor-in-chief of Pallimed and a palliative care doctor at the University of Kansas Health System. If he isn't reading about HPM research, you can find him reading board game rules.
In 2003, I began my hospice and palliative medicine (HPM) fellowship in Winston-Salem, NC. I was a solo fellow in a new program, and as luck would have it, I had loads of time to dedicate myself to learning. Since my wife, Kelly, was beginning her pediatric emergency medicine fellowship in Kansas City at the same time, I only had my dog and my fellowship to worry about. I always enjoyed reading articles and imagined how it would apply in my own practice. But when it came down to it, I was never really able to implement much of what I was reading, let alone have the numbers to benchmark against the research.
Fast forward to Spring of 2016. With years of experience across multiple care settings, I finally had an opportunity to implement research tools into everyday clinical practice by using the Edmonton Symptom Assessment Scale (ESAS) in each visit and tracking how patients do over time. I had used the ESAS in a few visits over the years, but could never seem to use it reliably at every visit with every patient.At KU, we have been using a modified ESAS (with Mild, Moderate Severe) on the inpatient side for a long time, but never the numbers-based ESAS that would be most applicable to research. In practice, my symptom assessments were always driven more by the narrative of the patient, winding indirectly as the patient told their story. I never pressed hard on getting the mild, moderate, severe directly from the patients mouth, but would interpret their story into the scale and document it. Eventually I would get a comprehensive view of symptoms and make a good clinical plan, but I was never going to be able to use that to demonstrate quality nor publish research.
Even admitting this publicly, has taken me some time to do. I figured that everybody was already getting patient-reported outcomes. Frankly, it feels kind of embarrassing to admit. But as I talked to more people, I realized that other HPM clinicians were also not able to apply tools like the ESAS universally. Sure they might get few numbers or severity scores, but to do that at EVERY visit and for EVERY patient, that takes more than just clinician will. It takes a system-based approach to change. And that is not easy.
So in 2016, I talked with the outpatient nurse navigators, Amy and Wendy, and I asked them to help make sure that EVERY patient at EVERY visit was getting an ESAS form and that we were documenting it in the chart. They were both game, which I look back on and count my blessings. In all my previous attempts, when moving from research to implementation that culture change step always worked for a week or two and then regressed to the baseline. Someone gets too busy, or behind and then the standardized thing you are trying to do feels like 'extra work' for no good reason.
To help ensure our success, we made it a focus to talk about the ESAS at the beginning of the clinic day, in between patients and a debrief at the end of clinic. At first, our language was probably inelegant as we introduced the ESAS concept. When people rebelled against 'one more form' or 'hating those damn numbers', we initially backed down, but we persisted and it paid off, because we refined our language and we discovered how to overcome the hesitation of our patients. We helped our patients see the ESAS numbers as a demonstration of their voice and experience. After one interesting conversation with a patient, we began to call these numbers 'our palliative care labs' because 'no blood draw is going to tell me that your nausea was awful last night.'
It took a while but we also recognized that just 'getting the numbers' was not enough. Going back to get these numbers after the visit was over and the plan was made was showing the patients that the symptoms were not necessarily driving the plan. So we adjusted and worked to make sure the ESAS was one of the first things we discussed with the patient, which in turn became the spine of the visit and therefore drove the plan.
Once we began to get consecutive visits with ESAS scores, we were able to show the patients their numbers over time. The feedback was tremendous in demonstrating that we cared about their symptom experience, and as we have become more facile in applying the ESAS we have noticed the objections fall greatly.
And now we have lots of ESAS numbers over lots of visits, but (and this is a BIG BUT) they were all buried in the narrative/free text part of the chart. So we needed to find a way to get this data exported from the Electronic Health Record. I'll share how we did that in part two tomorrow, because when I tried to figure out how to accomplish that, there was no guidance online I found helpful. My hope is that these stories of my clinical transformation from research wanna-be to providing the founding blocks of research and quality improvement may help someone else see that it is possible.If you want to join in the conversation, this Wednesday we will be hosting the September #hpm Tweet Chat on the topic of "Moving from Research to Implementation to Research in HPM." #hpm Tweet Chats are held on the last Wednesday of the month at 9p ET/6p PT. Sign up on hpmchat.org to be updated of the monthly topic.
Christian Sinclair, MD, FAAHPM is immediate past president of AAHPM, editor-in-chief of Pallimed and a palliative care doctor at the University of Kansas Health System. If he isn't reading about HPM research, you can find him reading board game rules.
Monday, September 25, 2017
Wednesday, October 5, 2016
Apologies for the “clickbait” title to the blog post; scouring the internet it seems that hyperbole works to get readers’ attention, certainly among entertainment sites and maybe increasingly within presidential politics. But it seems I had little choice; the fifth word of my title is “Quality”, which excites very few people. Bear with me, I promise this will get good.
Quality improvement is critical for palliative care organizations to build and sustain success within their clinical missions. Those who are watching and evaluating us, including patients, caregivers, health systems, regulators, and payers, are increasingly expecting a consistent product, delivered in close alignment with our growing evidence base. Further, rapid evolutions in the health care delivery and payment ecosystem require palliative care organizations to masterfully deploy quality improvement initiatives to solve problems. This requires a facile understanding of key steps needed to transition from identifying a problem to sustaining the change.
I’ve spent much of the past five years working as a Quality Improvement Coach for the American Society of Clinical Oncology’s (ASCO) Quality Training Program and ASCO/AAHPM Virtual Learning Collaborative and have come away with a few pearls that may be helpful. I also highly recommend “The Improvement Guide” by Langley et al., seen by many as the definitive textbook for healthcare quality improvement.
Below I offer Five Tips, by no means an exhaustive review, but a decent place to start.
Tip #1: Define the problem – Have a problem statement. This is one or two sentences that covers the Who, What, When, and Where of the problem (but not Why or How). Add a Harm to this statement to give it some punch. For example, “At the Mustard Clinic, from January through July 2016 the outpatient palliative care clinic no-show rate was 40%, missing critical opportunities for patients to receive timely symptom management, goals of care discussions, and possibly reduce time in the hospital during an unwanted readmission.”
Tip #2: Define the problem, again – Quality improvement committees are like family meetings, everyone’s inherently and not unexpectedly on different pages. When starting a quality improvement committee meeting, go around the room and ask everyone what they think the problem is you’re trying to solve. Marvel at the variation, and the “scope creep” and “scope drift” that occur over time. And then insert your excellent family meeting skills to get everyone on the same page. Lack of consensus on the specific problem will sink you.
Tip #3: Problem first, solutions (much) later – If your problem statement sounds something like this, “Because of high 30-day readmission rates at our hospital, we need more palliative care” then you’ve put the cart before the horse. All quality improvement starts with a specific, agreed-upon problem – not a solution. Starting a palliative care clinic, growing a palliative care service, applying disease-based triggers for consultation, etc. are all solutions. Implementing your solution is not the point of quality improvement, it’s solving a problem. Our practice is to not speak of solutions until at least the fourth meeting of our quality improvement committee.
Tip #4: Have an aim statement. What is the goal of your quality improvement project? Be specific, and think of the Who, What, When, and Where (but not How). For example, “By July 2017 we will decrease the outpatient palliative care clinic no-show rate to 25% at the Mustard Clinic.” You cannot yet know the “How”, because it’s dependent on the “Why”. And you can’t understand the “Why” without exploring the drivers of the problem, and the process by which the problem occurs.
Tip #5: Explore the “Why”. Be curious, open-minded, and solicit opinions of all stakeholders. The above fictitious problem of clinic no-show rates is complex, and not easy to solve (or people would have solved it already). If any part of your brain is saying, “Isn’t it obvious, what they need to do is….” then you’re like the 99% of us (very much including me) who must practice exploring the process, and getting input from all stakeholders. I could imagine this committee would solicit input from patients, caregivers, front desk staff, phone triage personnel, appointment schedulers, nurses, physicians, and financial counselors. Can you think of others? Drawing the process from start to finish is also very helpful. How does a patient go from being referred to the clinic to successfully coming? Where are all the places the process could go wrong? What data is needed to quantify the shortfalls? The point here is try not to go down a path of implementing solutions until you’re confident of the problem, have an understanding of where the process is breaking down, and have tailored the solution to that breakdown.
I’ll be speaking more about this topic, and will be joined by several other national leaders including Drs. Diane Meier, Steve Pantilat, and Phil Rodgers during the 2nd Annual Palliative Care Quality Matters Conference on October 20th from 12-5PM EST. The Conference is hosted by the Global Palliative Care Quality Alliance (www.gpcqa.org), a multi-site, volunteer collaboration of healthcare organizations with a passion for improving quality in palliative care.
The virtual conference presented via Webex is open to all colleagues with complimentary registration and CME/CNE. Register at www.gpcqa.org/qmc
Additionally, this Wednesday evening October 5th at 9PM EST/6PM PST I’ll be hosting a Tweetchat. Would love your input on the following questions:
T1: What makes performing quality improvement challenging in palliative care and hospice?
T2: Most quality improvement projects don’t work. Name an epic failure you were part of. What did you learn?
T3: Change my Top Five to a Top Ten list. What tips could you add?
T4: How could we help each other in our field do better quality improvement? What’s the role of AAHPM, HPNA, NHPCO and other membership societies?
What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 10/5/2016 - 9p ET/ 6p PT
Host: Dr. Arif Kamal @arifkamalMD
Follow @hpmchat and go to www.hpmchat.org for up to date info.
If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org
For more on past tweetchats, see our archive here.
Arif Kamal MD MBA MHS is the Physician Quality and Outcomes Officer and Assistant Professor of Medicine (Oncology and Palliative Care) at Duke University. He is a diehard Kansas City Chiefs football fan, which has prepared him for discussions regarding futility and complicated grief with his patients.
Wednesday, October 5, 2016
Wednesday, April 27, 2016
I was drawn to the field of palliative care by something subjective, the feeling of deep satisfaction from providing goal-aligned care for my patients, and the desire to do that better. In training, I came to realize that while much of our work lies in the qualitative realm, the key to doing it better lies in the underlying structure and frame of good communication, symptom management, and care coordination. It is no surprise to me, then, that palliative care is embracing the increasing emphasis on healthcare quality and value; in other words, the quantitative measures that underlie the qualitative experience of our patients and families. I was gratified to see the number of sessions at this year’s AAHPM Annual Assembly that were focused on this topic, and was especially interested in the discussions around the less easily measured aspects of the care that we provide. Many of the metrics that have been tracked and reported in the palliative care field have focused on expenditures and resource utilization, and I for one have struggled with how to collect and organize data on the actual quality of the care I’m providing.
So what does high quality palliative care look like? How
do we measure quality of life parameters in an efficient and meaningful way?
How do we measure the alignment of a patient’s care with his or her goals? How
do we measure the ways in which we impact their experience of advanced illness?
Please join NQF's National Quality Partners and the
Coalition to Transform Advanced Illness Care (C-TAC), co-hosts of the
Wednesday, April 27 (9 pm-10 pm ET) #hpm TweetChat, "Measures that Matter
in Advanced Illness Care."
TweetChat topics:
* Q1
What is the most important aspect of care delivery that you or your
organization currently measures to assess quality #hpm?
* Q2 How
are quality measures integrated into staff performance evaluations & to
whom do they apply (leaders, nurses, chaplains, etc.)?
* Q3
What do individuals & their families see as the most important marker of
quality #hpm care?
* Q4 If
you could identify one measure to capture overall #hpm quality, what would it
be?
* Q5 If
you could add one policy that would improve the delivery of #hpm, what would it
be?
#hpm TweetChats take place every Wednesday at 9 pm ET and
began in 2010 to bring people together to discuss a broad range of hospice and
palliative medicine topics, learn from interdisciplinary perspectives, and
empower everyone to become advocates for high-quality advanced illness care.
Supported by The Research Retirement Foundation, this
TweetChat builds on an NQP initiative to promote high-quality care for adult
patients of all ages with advanced illness. NQP and C-TAC are working together
to galvanize diverse stakeholders to action and maximize their collective
impact.
Meredith MacMartin is a palliative care physician at Dartmouth-Hitchcock Medical Center (@DartmouthHitch) and @GeiselMed. She is also one of the moderators of #hpm chat.
When: Wed 4/27/2016 - 9p ET/ 6p PT
Host: NQF’s National Quality Partners follow @NatQualityForum and Coalition to Transform Advanced Illness Care follow @CTACorg
Follow @hpmchat and go to www.hpmchat.org for up to date info.
If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org
For more on past tweetchats, see our archive here.
Wednesday, April 27, 2016
Thursday, September 10, 2015
Palliative care is at a crossroads. We have for several decades leveraged our tenacity, charisma, and evidence base to transition ourselves from a novel consultative service to the accepted, standard-of-care approach of caring for persons with serious illness and their caregivers. Despite the remarkable integration of our services and care philosophy, we are not immune to the shifting winds of change across all of healthcare. From the upper echelons of healthcare on down, clinicians, administrators, payers, and patients are all evolving they ways they deliver, receive, and evaluate healthcare. Among all the changes and evolutions taking place, one thesis statement summarizes the transformation between the old and new ways: Quality. Now. Matters. And it is how we react to the increasing calls for measuring, reporting, and proving quality of healthcare delivery in specialty palliative care that will dictate the future sustainability and growth of the discipline.
Modern approaches to total quality management depend on a diligent focus by organizations in four key areas: regular implementation of structured quality improvement cycles, transformation to a culture of continuous awareness of service defects, engagement for change by employees across all levels of an organization, and a patient-centric definition of quality that welcomes consumer feedback. Admittedly, these are difficult concepts to master, and harder still to implement. Further, in palliative care, the clinical services we provide are diverse, complex, and demanding. The answers are not always easy, and not often found by leaders outside of our field. Improving the quality of care we deliver is fundamentally the professional responsibility of those who know the discipline from the inside. Although we possess expertise at providing clinical care, developing consultative programs, and growing our field, the fundamental infrastructure to learn, collaborate, and improve our care through an advanced understanding of healthcare quality improvement is missing, and sorely needed.
As a grassroots effort to change this, we at the Global Palliative Care Quality Alliance are hosting the inaugural “Quality Matters Conference” on October 15, 2015. This webinar-based, half-day virtual conference will use short didactic sessions (limit 20 minutes) and open Q and A sessions to address several of these impending changes for our field, and across healthcare. We will discuss topics such as: the national landscape of quality measurement, the Measuring What Matters initiative from AAHPM, evolving reimbursement policies and their links to quality measurement, leadership for change and motivating clinicians, and billing and coding tips for busy clinicians. All the topics center around our theme for the conference, “Innovation through Collaboration,” which highlights the need to band together within the discipline to guide innovations in high-quality palliative care delivery. To emphasize the importance of such education, we will provide complimentary registration and Continuing Medical Education (CME) and Continuing Nursing Education (CNE) through Duke University (register at www.gpcqa.org/qmc). We hope to provide an informative, collaborative, and engaging environment for palliative care team members of all backgrounds to learn more about palliative care quality.
The collaborative spirit of palliative care is truly one of its greatest strengths. We regularly come together to teach, learn, and grow from each other. We are the model that other disciplines strive to emulate. We look forward to seeing many wonderful colleagues at the upcoming Quality Matters Conference to learn how we can all play a vital role in improving the experience of those with serious illness and their caregivers, one quality improvement initiative at a time.
We will also be talking about quality initiatives in palliative care during the September 16th #hpm chat. We hope you can join us then. Details are below.
Dr Arif Kamal (@arifkamalmd) is an Assistant Professor of Medicine at Duke University. His research is focused on palliative care outcomes, quality, and professional burnout.
What: #hpm chat on Twitter
When: Wed September 16, 2015 - 9p ET/ 6p PT
Host: Dr. Arif Kamal (@arifkamalmd)
Follow @hpmchat on Twitter for all the latest on #hpm chats.
If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using a chat client like Tchat.io or Tweetdeck for ease of following.
You can access the transcripts and analytics of #hpm chats through @Symplur.
Thursday, September 10, 2015
Monday, June 1, 2015
Some years ago, on an inpatient hospice locum, where the majority of the hospice residents had cancer, I made a point of visiting the day room as often as I could. It was a source of wonder; whenever I looked in it would be humming with activity. In one corner, a sing-song would be in session, with a volunteer accompanying on piano; in another corner, set up as a little coffee shop, there were animated discussions going on at every table. Outside, the minibus, driven by another volunteer, was drawing up, and some residents burst in the door full of news about their guided trip around the Botanic Gardens. It was a place where death was not considered an enemy.
The locum post also included home visits, and during one of these I attended a patient in a nursing home for the elderly. After the consultation, on the way out, I passed the day room. It was huge, gloomy, and cavernous. The floor was covered with a grubby stained carpet, and the curtains were partly drawn even though it was a dull cloudy day and dark enough outside. A television was blaring; a children's cartoon was on. The old people were lined against the wall; some were rambling and whispering to themselves, others were dribbling, most were just staring into space. An old man sitting near the door pawed at me, and I recoiled involuntarily and fled. There was just too much grief, too much misery to cope with; it was a place where death would have been a real friend. As with the Struldbruggs in Gulliver's Travels, there can be no fear of death when we see the real horrors of eternal life.
But why? Why is there such a gulf in the level of care? Both sets of patients are dying and both are surely equally deserving.
There are, however, some significant differences. The people in one group are younger and are able to communicate their symptoms better, and they have more predictable and shorter prognoses. For every patient dying with cancer, a family doctor will have three or four dying with one of the degenerative diseases of the elderly. If a patient with senile dementia is in severe chronic pain, are any of us going to have the time to visit them regularly during the day and follow them up regularly during the following weeks and years?
As W.B. Yeats said, “Too long a sacrifice can make a stone of the heart;” and if it’s tough for us, consider the 24/7 burden carried by the carers, with no end in sight.
Patients with cancer are different and, dare I say it, easier to look after; it's like getting on a train a few stops from the station. We know that, however onerous the commitment, it won't last for ever. So lots of other passengers jump aboard: distant relatives, neighbours, specialist nurses, hospice doctors, social workers, chaplains. And when the train pulls into the station—bang!—we all jump off in a huge blast of endorphins.
Do-gooders? As John Wayne said, “We're doing good for ourselves.”
Please come join Dr. Liam Farrell as he hosts #hpm chat this Wednesday night. Details below.
Related Resources:
Irish Times Article June, 2015: Elderly care home patients given ‘chemical cosh’ drugs
Journal of General Internal Medicine Feb. 2015: Hospice use among nursing home and non-nursing home patients
New England Journal of Medicine, May 2015: Changes in Medicare costs with the growth of hospice care in nursing homes
Dr Liam Farrell (@drlfarrell) has been a columnist for many years, for the BMJ and Lancet among others. He was a family doctor for 20 years in Crossmaglen, Ireland, and is a former tutor in palliative care. Follow his Facebook page.
What: #hpm chat on Twitter
When: Wed 06/03/2015 - 9p ET/ 6p PT
Host: Liam Farrell @drlfarrell
Facebook Event Listing: https://www.facebook.com/events/1441986336104144/
If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io, for ease of following.
You can find Chat Transcript and Chat Analytics courtesy of @symplur
Monday, June 1, 2015
Tuesday, November 18, 2014
Plenary Sessions
Diane Meier opened the seminar by expressing gratitude for the work of palliative care professionals across the country. Using the Diffusion of Innovation Theory, Dr. Meier proceeded to make a cogent case that palliative care is past the tipping point and sits on the precipice of being institutionalized such that palliative care will be seen as an indispensable and expected component of health care delivery in all settings moving forward. She supported her case by referencing a variety of accomplishments including but not limited to:
- palliative care as an established field with a high prevalence of palliative care teams in hospitals;
- the increasing number of formal certification and accreditation processes in palliative care;
- the growing public and professional awareness about palliative care. See Being Mortal as one example;
- the increased number of palliative care training options through entities like ELNEC, Vital Talk, and CAPC;
- additional evidence on the benefit of palliative care for patients and families;
- supportive policy and enhanced advocacy.
David Weissman used his plenary to encourage palliative care professionals to be educators. While many palliative care teams may balk at opportunities to educate due to a lack of time, Dr. Weissman encouraged teams to find creative and meaningful ways to educate. He provided examples on ways to integrate education informally into clinical practice. Moreover, Dr. Weissman spoke to maximizing the learning experience through thoughtful and intentional approaches to defining the title of your presentation, writing objectives and selecting your educational format. Additionally, Dr. Weissman referenced tools to aid you as an educator such as the End of Life/Palliative Education Resource Center and Fast Facts. Later in the seminar, CAPC recognized Dr. Weissman with the CAPC 2014 Innovation Award for his substantial and meaningful contributions to the field of palliative care.
Sister Carol Keehan, President and CEO of the Catholic Health Association of the United States offered effusive praise for the work of palliative care professionals during her session. She described the integration of palliative care services in CHA member health systems while repeatedly noting the importance of high quality care for the seriously ill.
Graeme Rocker from Dalhousie University discussed the program INSPIRED Approaches to COPD: Improving Care and Creating Value. Dr. Rocker described this outreach program for patients and families living with advanced COPD and demonstrated how the program resulted in improved clinical outcomes for patients as well as a reduction in ED visits, hospitalizations and hospital days. During his presentation a family member who benefit from the program described her experience and the importance of palliative care professionals.
Former Senator Bill Frist offered the final plenary session. Dr. Frist described the role of the private sector in scaling palliative care. Dr. Frist highlighted the private sector’s ability to move quickly, provide capital to programs and experiment with new models of care delivery. Furthermore, he articulated the value palliative care brings to the private sector as incentives for quality increase. He concluded his presentation by demonstrating how Aspire Health is working with the private sector to respond to the needs of the seriously ill.
Conclusion
On the whole, the 2014 CAPC Seminar offered the over 900 attendees the tools to address issues that are integral to the development and sustainability of high quality palliative care programs. Intensive and concurrent sessions offered a wide range of expertise including but not limited to program development, clinical models, quality metrics, leadership, developing business plans, palliative care across systems, inpatient, outpatient, clinic based and home palliative care, palliative care in the ICU, emergency department and long-term care facilities, reaching out to payers, and specific populations.
CAPC will be a membership organization beginning in 2015 and attendees got the first look at some of the benefits of membership which includes online curriculum, virtual office hours, and web conferences.
The conference offered adequate time and setting for networking opportunities and included “office hours” so attendees could work directly with faculty experts. The #CAPCSeminar14 received much attention from a thoughtful and active community on Twitter. It’s well worth searching the hashtag to see quotes, photos, articles, and references.
Undoubtedly, participants will use the content from the conference to launch new or enhance existing palliative care programs across the country.
Turner West, MPH, MTS is an educator and administrator at Hospice of the Bluegrass in Lexington, KY. He is married has a 16 month old with a “ask me about palliative care” bib and an 8 year-old St. Bernard.
Image Credit: Palm Trees Gerald Harriman (@hpmsudo) via Twitter
Image Credit: Conference Hall Ian Kwok (@kwokytalky) via Twitter
Tuesday, November 18, 2014
Friday, October 31, 2014
How many times has a friend, a relative or a colleague asked me to recommend a good hospice in Reno or Redding or Rockford and I was flummoxed. Even if I knew the medical director or the executive director from work on national committees and thought he or she was a great, what did I really know about the quality of service provided by their hospice? I often wished I could have access to the kind of data I typically review when consulting with a hospice - their length of stay, proportion of patients living in a nursing home, proportion of patients discharged alive, readiness to provide continuous care, robustness of the on-call service, etc.
Now, at least some of that information is available on-line through a website developed by the Washington Post. The key information in the new Consumer Guide to Hospice is taken from Medicare cost reports and "other sources." One can see the size of the hospice, age, ownership type, amount of continuous care or general inpatient care provided, and spending per day on therapy, doctors, and nursing. The database also reports a hospice's "profit" per day, a label I find highly misleading (more on that below).
Is this information helpful?
In a limited way, yes. I would advise people to look first at accreditation status. Only 40% of hospices are accredited, and I would always lean towards an accredited program when available. Although accreditation tends to focus more on structure and processes than on outcomes, a program that has been accredited has had objective outside reviewers who have given it a stamp of approval. That speaks to a program's willingness to open itself to review and, hopefully, improvement.
Next, focus on size and age of the hospice. As in almost every other part of medicine, practice is linked to higher quality. Experience - gained over time and gained over a number of cases, usually helps build both individual clinician expertise and organizational/team expertise. Very new and very small hospices are unlikely to have the breadth of experience and the depth of resources to assist with challenging or unusual circumstances. Unless I had a specific reason to know that a very small or very new hospice had a service or skill that was needed (such as a new pediatric service or a new hospice residence), I would stick with hospices with experience of at least 5 years (10 years is even better) and volume of at least 80 patients per day. Not always possible in a rural area - but rural areas may not offer a choice in any case.
Third, I'd look at the "live discharge" rate. The Post justifies this number saying that large number of people leaving a hospice may indicate they are unhappy with the care and services. Maybe. More likely it represents a hospice had a very (maybe overly) open admission policy, taking people too early and too "healthy" and then discharging them. I would actually select hospices that had live discharge rates in the 10% to 20% range. Too few live discharges likely means the hospice is too tight and guarded in who they accept, and not willing to bend flexibly to each patient and family's needs. But too high a discharge rate - let's say over about one third - makes me uncomfortable too. Stay in the middle on this indicator.
Fourth - I would advise NOT looking at the $ per day. The data likely comes from the Medicare Hospice Cost Reports, which have all kinds of issues in how data is reported, especially when hospices run their own inpatient units. The so called "profit" is especially misleading. I can't tell exactly how the Washington Post calculated the number - but if, as I guess, it is everything left over after "allowable" Medicare costs, it is in no way all "profit" for a hospice. Recall, hospices are required to provide bereavement services without Medicare reimbursement. Many hospices plow money left over after nursing and doctor and therapy costs into community bereavement services, extensive community education, bridge programs, or other community services. The "profit" number doesn't give any indication whether these dollars are truly "profit" being returned to shareholders, reserves begin saved for a rainy day, or carefully husbanded resources that fund additional community services. As interesting as it is, I'd ignore that information when choosing a hospice.
The Consumer Guide allows you to filter by ownership status at the very start of a query, which seems to imply that ownership status ought to be part of one's consideration. But I don't find ownership status to be a very useful indicator. It's true that a lot of Medpac's recent policy analysis has focused on differences between not-for-profit and for-profit providers, and that some concerning trends are associated with for-profit providers. But in my experience there are both good and not-so-good providers in both groups, and ownership status is not nearly as helpful in distinguishing between them as the other factors mentioned above.
Finally - I would advise supplementing the information in the Consumer Guide with careful telephone screening of any hospice being considered. I like the list of 16 questions to ask on the website of the American Hospice Foundation (disclosure: I was on the AHF board for many years.)
Many in our community have been upset at the way that the ongoing Washington Post series has emphasized problems in hospice care. I agree that those problems are not the rule - but we also can't ignore them. Giving consumers - and us, the supposed experts - the information to begin to sort out who is operating way outside of the norm - is a helpful step. I applaud the Washington Post for making this information accessible.
PS. Make sure your hospice checks - and corrects, if necessary - the information displayed about it. We have already heard from some organizations who noticed errant information for their site.
Friday, October 31, 2014
Thursday, September 5, 2013
“I’m seeing the road that I’ve traveled
A road paved with heartache and tears
And I’m seeing the past that I’ve wasted
While watchin’ the bubbles in my beer”
- Bob Wills
I’ve always preferred Bob Wills’ “…bubbles…” to Don Ho’s “Tiny Bubbles”. The former always feel more contemplative, but also remind me to continue to break out of the doldrums…the usual…don’t take the world as it sits today as the way it will always be.
For those looking to break new ground and collaborate on enhancing palliative care in the community, a new opportunity is getting underway. The American Society of Clinical Oncology (ASCO) in collaboration with the American Academy of Hospice and Palliative Medicine (AAHPM) is embarking on a Virtual Learning Collaborative pilot to improve the delivery of palliative care in oncology practices.
This multiyear project will encourage oncology practices to develop evidence-based approaches to palliative care and to use proven quality improvement techniques to do better each day than the day before.
Applications are being accepted through the end of September from practices that are registered for ASCO’s Quality Oncology Practice Initiative (QOPI). Teams, including a physician-champion and other leaders, from 25 practices will be selected to participate in this pilot.
Visit this link to learn more about the program:
http://www.asco.org/institute-quality/asco-virtual-learning-collaborative
What does this mean to the Pallimed reader?
Reach out to oncology practices with which you work today, or with which you would like to collaborate. Ask them if they are ASCO QOPI practices…are they thinking about this learning opportunity…and would they like a date?
To learn more about this project or about ASCO’s QOPI program send a note to vlc@asco.org
Sometimes you have to leave the bubbles to do their thing, and get up off the bar stool, and make a difference in this world. This just might be that opportunity.
Thursday, September 5, 2013
Friday, September 30, 2011
by Lyle Fettig
The Journal of Clinical Oncology published a Swedish study which examines correlation between patients being informed of imminent death status and other palliative care quality outcome measures. In the study, 91% of patients were informed of their imminent death status. How was this measured? Sweden has a national palliative care registry which is described in the study text (click the little Union Jack at the top right of the page to view the front page in English) :
This online register was completed by the physician and/or nurse responsible for the patient's care during the last week of life, although HCPs were not aware of the research question of this study. The design of the SRPC Web questionnaire does not allow any missing data at submission. The Web questionnaire is based on the 11 principles constituting good death as defined by the British Geriatrics Society and was designed to be used in any care setting, independent of diagnosis, with the intent to look retrospectively at important aspects of care delivered during the last week of life. The 25 items on the SRPC include 14 questions that cover background data of patient and reporting unit and three questions that cover items not considered relevant to the aim of this study (ie, use of visual analog or numeric rating scales during last week of life, frequency of pressure ulcers, and staff reflection). The remaining eight questions covering, for example, degree of autonomy, information about imminent death, symptom control, parenteral as needed (ie, pro re nata or PRN) prescriptions, and preferred location at time of death, were included in the analysis in this study.The ACP Hospitalist Blog commented on this study in more detail right after the study was released. I'm going to keep my comments on the results brief. The bottom line was no surprise. Being informed of imminent death status correlated positively with more prn symptomatic medication orders, family being informed of imminent death status as well as being offered bereavement services, and patients recorded as dying in their preferred location. Being informed did not correlate with increased anxiety or pain. Minor methodological issues aside, this is yet more data (need we more?) to suggest that we should get over the worry about the effect of prognostic information on patients, even at the very end. When we don't sensitively explore patients' wishes for prognostic information and then give them info when they want it, it's usually because of our own discomfort rather than a protective effect for the patient.
What really strikes me about this study though is the existence of the database which made the study possible. Considering the fact that I would struggle to access many of these data at my own institution, it's amazing that Sweden has a national database and that over 13,000 subjects could be included in the study. Sweden is not unique in their attempt to measure various outcomes on a population level near the end of life. See this Canadian study looking at the trajectory of performance status and symptom scores in patients with cancer in the last six months of life.
Would something like this be possible in the United States? Could we develop a common repository for palliative care outcome measurement for individual patients? What are the true patient-centered outcomes which matter most to our patients and families when confronted with serious illness?
These questions don't exist in a vacuum and should be viewed within the context of the Accountable Care Act and evolving healthcare system. The Department of Health and Human Services recently released final rules for Accountable Care Organizations. The rules document describes 33 quality outcomes which ACO's will need to report in order to qualify for "shared savings" above and beyond Medicare Part A and B reimbursements (see page 324). In the first year of the program, merely reporting all 33 outcomes will be sufficient to qualify for the "shared savings" payments. In subsequent years, the ACO will need to meet a certain standard to qualify.
Take note of the first ten quality outcomes (all but the last three will be measured by patient survey data):
- Getting Timely Care, Appointments, and Information
- How Well Your Doctors Communicate
- Patients' Rating of Doctor
- Access to Specialists
- Health Promotion and Education
- Shared Decision Making
- Health Status/Functional Status
- Risk-Standardized, All Condition Readmission
- Ambulatory Sensitive Conditions Admissions: Chronic Obstructive Pulmonary Disease
- Ambulatory Sensitive Conditions Admissions: Congestive Heart Failure
While I'm rambling on about everything under the sun, the Swedish Palliative Care Registry has a second questionairre that is filled out yearly at a program level (rather than specific to individual patients). We do already have a registry similar to this: The CAPC National Palliative Care Registry. Your program should sign up for that, too, if it hasn't already.
Friday, September 30, 2011
Tuesday, September 13, 2011
by Holly Yang
On September 1st 2011, the Joint Commission started certifying hospital-based Palliative Care Programs! It is open to all Joint Commission accredited hospitals including long-term acute care care and children's hospitals. The standards for certification were based on the National Consensus Project's Clinical Practice Guidelines for Palliative Care and A National Framework and Preferred Practices for Palliative and Hospice Care Quality from the National Quality Forum. For previous comments on the importance of this see Christian's post from spring when it was announced.
It is "designed to recognize hospital inpatient programs that demonstrate exceptional patient and family-centered care in order to optimize the quality of life for patients with serious illness. Palliative care involves addressing physical, emotional, social and spiritual needs and facilitating patient autonomy, access to information and choice."
The full text is here, but some of the highlights of the requirements are (I'm paraphrasing, so please see the complete text for all the little words that make a big difference):
- 24/7 coverage - by phone on nights and weekends, with availability of someone to come in to see the patient if necessary, and "must be able to provide the same level of palliative care services during nights/weekends as during normal weekday hours."
- See patients - At least 10 in the past and at least one during the on-site review
- Use evidenced-based approach to guide care (and/or practice guidelines to deliver care using a standardized method)
- Have the ability to direct clinical management and coordinate care
- Have an IDT (interdisciplinary team) and follow an organized approach to deliver care
- QI - Improve performance by collecting performance measurement data over time (at least 4 months' worth). No specific tools, but should be "evidenced-based, relevant, valid and reliable"
While some of these may be a challenge, it will help to standardize what "palliative care" delivery is in hospitals and help patients get the quality care they need. It will help hospitals know what is important in providing palliative care, since they don't live and breathe this every day. For example, making IDT a part of the requirements is so important, because it helps hospital administration types understand the necessity of the team approach to whole-patient care. While I don't think the hospital will be so excited to get this certification that they will immediately offer to hire a full-time social worker and chaplain/spiritual counselor for your team, I do think it is a step in the right direction and can only help you advocate for the inclusion of more psychosocial and spiritual support.
The 24/7 requirement has generated some discussion on the Center to Advance Palliative Care (CAPC) forum, as this may be one of the most difficult requirements for many programs, but does make sense for our patients' care. If I put myself in the patient's shoes, if I needed help from a palliative care team at 9 pm on a Saturday night, I really hope I could get it. Just like if I needed a cardiologist, one better be available. To expect the people who consult us to partner with us fully, we need to be available to help. It can't rely on one person on call 24/7/365. We may need to get creative and partner with other providers (like your local hospices). It will be interesting to see what teams do, and it will be a great thing for us to share our experiences with each other, a kind of national brain-storming for good solutions.
CAPC has done a great job getting you the resources you need including how-to guides and an audio conference. Check them out and best of luck!
Thanks to all those who worked so hard to get these in place, and thanks to all of you out there taking care of the patients every day.
Tuesday, September 13, 2011
Tuesday, March 29, 2011
- A formal, organized palliative care program led by an interdisciplinary team whose members possess the requisite expertise in palliative care,
- Leadership endorsement and support of the program’s goals for providing care, treatment and services,
- A special focus on patient and family engagement,
- Processes which support the coordination of care and communication among all care settings and providers, and
- The use of evidence-based national guidelines or expert consensus to guide patient care.
I do like the emphasis on the whole hospital program and not just the team. This may set some higher standards than all teams will be able to accomplish, but then I think that makes all of us strive to do better. Or we can be like Lake Wobegon where everyone is above average. I just wonder what percentage of teams will be able to achieve this certification for the hospital as a whole. This cutoff point will be interesting to watch.
When The Joint Commission comes to your hospital, your palliative care team can get excited because now you may be the people that help the hospital achieve more recognition. The suits in the C-Suite might find a new interest in what your program is doing and hopefully (fingers crossed) you might get the resources and staffing to achieve it!
One slight irony is the Advanced Certification for Palliative Care is housed in The Joint Commissions "Disease-Specific Programs." Palliative care is about people, I guess we have to keep on educating.
Tuesday, March 29, 2011
Saturday, November 20, 2010
For those of you wondering what to do with all of your free time now that the boards are over, I highly recommend immersing yourself for an hour or two in the maps, graphs, and tables of the Dartmouth Atlas’ first comprehensive report on end of life care for patients with advanced cancer. The premise of the Dartmouth Atlas is that the large local variations in health care services which Dartmouth has documented, are caused by supply (more surgeons=more surgeries; more hospital beds=more hospital days) and by local patterns and customs of care, NOT by evidence-based care delivered to achieve better outcomes. The Dartmouth Institute researchers assert that
“Our findings point to important opportunities to improve not only the quality of care (by ensuring that effective care is reliably delivered) but also to reduce the costs of care (by reducing avoidable hospitalizations and unnecessary specialist visits).”[1]
Saturday, November 20, 2010
Friday, May 7, 2010
During the 1998 Institute of Medicine (IOM) Roundtable on Quality, experts in the field categorized medical error into one or more of three areas: underuse, overuse, or misuse. Much discussion and research has focused on the topic of underuse (barriers to access of care, especially to preventive care), misuse (avoiding hospital-acquired infections, etc.) and others over the topic of overuse (provision of tests and interventions that have no clinical benefit and while still having associated risk).
Research by The RAND Corporation quantified some of the overuse: 20-40 percent of some surgical procedures are performed on patients who cannot, on scientific grounds, be expected to benefit from them (Leape et al. 1991). - From Don Berwick's Eisenberg lecture, April 2005
The national debates over healthcare reform have once again brought to the fore this 3rd cause for medical error - particularly due to its financial implications.
According to the American College of Physicians (ACP) 2009 policy paper, Controlling Health Care Costs While Promoting the Best Possible Health Outcomes, the Congressional Budget Office estimates that 5% of the American gross domestic product (roughly $700 billion per year) is spent on medical tests and proceduresthat do not improve health outcomes. (Introduction to interview with Steven Weinberger, MD, FACP - on Medscape)
I for one, look forwards to seeing what ACP brings forward with regards to evidence-based recommendations to address this question. In my practice in palliative care, it has not been uncommon for me to be called to address questions of intensity of care - not only from the patient's perspective, but through conflicting points of view between the physicians caring for patients. One very personal story for me was when I was called to another state, to the bedside of a dear friend who had been in a horrific car-on-bicycle accident. He on his regular 50 mile Sunday bike ride when a car swerved ever-so-slightly and hit him head-on. He was rushed to hospital with massive head and chest injuries. He had bilateral brain contusions and bleeds. After a couple of weeks of giving it their all, there was clear conflict between clinicians information being shard with families:
- One physician pointed to the small improvements each day: the wounds were healing, his face less swollen, cardiac function improving. His honest perspective was that he was getting better, and could continue to improve to leave the hospital. This physician treasured life over all else. In the words of Dr. Epstein's article referred to by Dr. Levy in his blog "Running a hospital:"
"The Role of the Physician in the Preservation of Life." Q J Med 2007; 100:585–589.
That, however, what he missed was meaning of the next part of Dr. Epstein's speech -
We physicians belong to an ancient profession, standing apart from all others in its primary concern and respect for human life and its enmity to death. And in the long run, that attitude of the profession may be as important to society as any miracle that modern technical medicine can perform.The fact is that for all our talk and our science, we do only a little. Life cannot be prolonged indefinitely, and death comes at last. But the little we can do has an importance that transcends the patient, for it carries a message to all our patients and to the world: Human beings are important.
- The other physician saw a very different picture: a young man, an athlete and artist who would never return to his previous vigorous self and should he survive this hospitalization (a big if) would likely remain on life-support for his remaining years would definitely always be completely dependent for all activities of daily living, unable to carry on a conversation. He saw the ongoing aggressive life-sustaining interventions as possible overuse, given the dismal outcome.
Harm from overuse is not merely harm to the patient and family (providing risky or painful procedures that have little to no benefit - principle of beneficence and non-maleficense) society (cost, burden - from the principle of justice), but also may harm staff: physicians, nurses, other caregivers. In some settings: test after test, procedure following procedure in a patient with progressive end-stage disease who remains minimally interactive but winces to the interventions. One physician ordering this, while others are the ones doing it, protesting as they do, questioning the rationale and the harm with perceived little-to-no benefit, as nurses pick up the pieces. Nurses, resident physicians, and attending physicians have spoken to me of their sense of struggle, their inclination to avoid patients to whom they are "forced" to provide care they see as not having benefit but instead harm. For the ordering physician, the drive may indeed be patient preference, or perhaps that personal and professional commitment to valuing life and fighting of its enemy - i.e. death.
In our field we weave through cultures of medicine and preferences of patients, families and even clinicians that represent a wide range of perspectives, even on the value of prognosticating stating that maybe this patient will be the one to beat the odds and question the role of epidemiology of prognostication or EBM in prognosis. (Thank you Drew for your review of the article on Prognosis in the Neuro ICU.)
One of our roles as the palliative care clinician or team-member, is to navigate in this world of uncertainty. To support families struggling as they see the patient slowly, ever-so-slowly die as more and more is done to prevent or slow down the death per their request, while supporting the healthcare team who struggles with the procedures that seem to have little to offer, while supporting and watching with the physician who is also doing all he or she can to keep this person, their patient alive - as he or she believes we can clinicians are called to do.
I think physicians fall in all areas of believe around these topics - influenced, of course, by personal values and education. I remember when I was a medical student meeting another med student at a wedding. On his way to the wedding he had seen a massive accident with multiple deaths. He told me that there he met our shared enemy - death. At that moment, I began to believe that there are two general places where people fall - on one end of the extreme: death the enemy, on the other, suffering the enemy. At risk of influencing this readership, I will share that in my mind, I believe that our call as physicians (and nurses, and all in healthcare field) is to prevent premature or preventable death, but the primary role - as Eric Cassell so eloquently wrote in numerous articles, is to alleviate suffering - in all its manifestations.
One of our roles as the palliative care clinician or team-member, is to navigate in this world of uncertainty. To support families struggling as they see the patient slowly, ever-so-slowly die as more and more is done to prevent or slow down the death per their request, while supporting the healthcare team who struggles with the procedures that seem to have little to offer, while supporting and watching with the physician who is also doing all he or she can to keep this person, their patient alive - as he or she believes we can clinicians are called to do.
I think physicians fall in all areas of believe around these topics - influenced, of course, by personal values and education. I remember when I was a medical student meeting another med student at a wedding. On his way to the wedding he had seen a massive accident with multiple deaths. He told me that there he met our shared enemy - death. At that moment, I began to believe that there are two general places where people fall - on one end of the extreme: death the enemy, on the other, suffering the enemy. At risk of influencing this readership, I will share that in my mind, I believe that our call as physicians (and nurses, and all in healthcare field) is to prevent premature or preventable death, but the primary role - as Eric Cassell so eloquently wrote in numerous articles, is to alleviate suffering - in all its manifestations.
Particularly in our field of palliative medicine, we walk on this ledge of uncertainty, of differing opinion and values, lending strength and comfort to any who suffer due to the illness and complications of treatment. We are also called to lend our expertise in preventing medical error - whether overtreatment, undertreatment, or mistreatment - in the time of life when patients, their families, and their clinicians often most struggle with defining what this means. Even when we personally may disagree with the choices made, our role is to lend strength, to practice non-abandonement, and - as Dr. Epstein was known to do - to "fluff the pillows" for patients and even to colleagues whether .
Friday, May 7, 2010
Tuesday, November 24, 2009
In consideration of the many family dinners that will occur over the next few days of the Thanksgiving holiday, for the second year in a row Pallimed is hosting (along with several other medical bloggers) a guest post from Engage with Grace and the One Slide Project. This post will stay at the top of Pallimed from Tuesday the 24th until Sunday the 29th. You can also join the Engage with Grace group on Facebook.
Have a safe and meaningful Thanksgiving!
Some conversations are easier than others
Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.
It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.
Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.
A bit of levity.
At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.
To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:
Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.
So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.
Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.
One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slidewww.engagewithgrace.org now stands sentry on their fridge.
Wishing you and yours a holiday that’s fulfilling in all the right ways.
(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )
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Tuesday, November 24, 2009
Thursday, April 16, 2009
1)
Pain has a paper about 'acceptance of pain' in cancer patients. They define 'pain acceptance' as: "the acknowledgement of pain without directing all efforts toward controlling it and refocusing efforts toward living a fulfilling life in spite of chronic pain."
The study involves ~130 patients at a single Canadian cancer center (mean age 55; ~60% saying that their worst pain during the day was moderate-to-severe) who answered a whole bunch of questions about pain, quality of life, etc.
They were also administered a pain acceptance scale which looked at activity engagement and pain willingness: "Activity Engagement measures the degree to which people with pain participate in life activities despite pain, and Pain Willingness measures willingness to experience pain without controlling it."
A shockingly-difficult-to-interpret (at least for me, and at least in part related to an exuberance of acronyms related to all the different scales used) regression analysis was then done to see what predicted more or less pain acceptance. So much so that I will just let them summarize their findings in their own words:
The finding that parents with kids at home had less 'willingness' was pretty solid and seems worth exploring. Regarding the other findings, I found myself asking why one couldn't conclude simply that people who were doing better (coping-wise) were doing better and they were simply measuring the same things (depressive symptoms as an index of activity engagement, catastrophizing as an index of willingness), as opposed to there being something unique/helpful about the idea of pain acceptance: particularly that pain acceptance didn't seem to have much to do with pain itself or function. For me, this is a good example of research which is tantalizing close to questions I grapple with as a clinician (What does it mean to be someone who copes well with their pain? Is that something 'real' and distinct from overall approaches to coping, psychiatric symptoms, or psychopathology? Is this a phenomenon which is amenable to clinical intervention separate from supportive counseling and good symptom control? etc.) but then disorients rather than clarifies....This is the first study to show that greater acceptance of cancer pain is related to better psychological wellbeing. ...This study is also the first to show a relationship between parental status and acceptance of cancer pain. Specifically, parents with children at home reported lower willingness to experience pain than those without children. Acceptance of cancer pain was unrelated to pain duration, severity, and qualities, subjective social and relational factors, and age and gender. This study adds to our growing understanding of biopsychosocial factors in cancer pain and its impact and suggests that acceptance may play a role in patients’ adaptation to living with ongoing disease-related pain. We found that Activity Engagement was related to lower severity of depressive symptoms, and Pain Willingness was related to less pain catastrophizing.
2)
JCO has a paper describing the development and initial validation (in a geographically restricted sample) of a tool to measure patient satisfaction with care in advanced cancer patients. The tool was developed to measure satisfaction/identify needs based on the following assumptions of what quality care means for advanced cancer patients:
[H]ealth care providers sensitively communicate with patients about their prognosis and promote shared decision making to the extent that patients want to be involved; patients are educated about what they can expect during treatment, what to monitor, and who they can turn to for help; patients are provided with their desired emotional support and symptom amelioration; patients are treated with respect; cancer treatment sessions support comfort, ensure privacy, and promote healing; and care is coordinated among health care providers.As you can see there is a particular focus on communication - the tool asks numerous questions about how communication went - and notably the area which patients most consistently identified need for improvement (over half) was regarding communication (as opposed to, say, how things went in the chemo-room, etc.). The validation data (internal consistency, etc.) looked promising.
Thursday, April 16, 2009
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