Less Pain, More Gain: Palliative Care for Ovarian Cancer
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Dr. Carolyn Lefkowits of CU Denver leads a presentation on palliative care and what it means for those with recurrent ovarian cancer.
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Less Pain, More Gain: Palliative Care for Ovarian Cancer
- 1. Less Pain, More Gain: Palliative Care Strategies for Recurrent Ovarian Cancer Carolyn Lefkowits, M.D. M.P.H. M.S. Assistant Professor, Gynecologic Oncology & Palliative Care University of Colorado Denver SHARE Webinar Sept 27, 2017
- 2. Objectives • Define palliative care & differentiate it from hospice • List at least 3 evidence-based benefits of palliative care • Differentiate between primary & specialty palliative care • Leave with homework
- 3. Outline: Palliative Care • What is it? • Why do we need it? • How can you get it? • Barriers • Next steps
- 4. What is Palliative Care? Palliative Care (PC): “therapies that address the multiple issues that cause suffering for patients and their families and impact their quality of life” NOT synonymous with end-of-life care/hospice Can be offered concurrently with curative therapy Smith et al JCO 2012
- 5. What is Palliative Care? “Palliative care is specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family…It is appropriate at any stage in a serious illness and can be provided along with curative treatment.” “an extra layer of support” Center to Advance Palliative Care
- 6. What is Palliative Care? Palliative Care Hospice
- 7. What is Palliative Care? Radwany & von Gruenigen 2012
- 8. ASCO & AAHPM Domains of Palliative Care 1. Symptom assessment & management 2. Psychosocial assessment & management 3. Spiritual & cultural assessment & management 4. Communication & shared decision making 5. Advance care planning 6. Coordination/continuity of care 7. Appropriate specialty palliative care & hospice referral 8. Carer support 9. End-of-life care ASCO Palliative Care in Oncology Symposium, 2015
- 9. Outline: Palliative Care • What is it? • Why do we need it? • Barriers • How can you get it? • Next steps
- 10. Why do we need palliative care? You are a Bridge: Palliative Care 1 min 40 sec youtube video (https://youtu.be/lDHhg76tMHc)
- 11. Benefits of palliative care Nonrandomized studies have shown the following benefits without decreased survival • Reduced pain & other distress • Improved health-related QOL • High patient & family satisfaction with care • Increased likelihood of location of death being outside of hospital • Reduction in hospital & ICU length of stay Meier et al 2006
- 12. • Randomized trial: 151 stage IV lung cancer patients – Arm 1: standard care – Arm 2: palliative care integrated from the time of diagnosis • Palliative care group – Improved quality of life – Less depression – Less aggressive care at the end-of-life – Statistically significantly longer survival
- 13. “It is the panel’s expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden”
- 14. • n=87 patients discontinuing anti-cancer therapy • Integrated Care Model (ICM) patients had seen PC prior to decision to d/c anti-cancer therapy • ICM patients – Better QOL – Less depression – Less chemo within last 6 wks of life (40% vs 6%, p=0.001) – Improved median survival (HR 0.48, p=0.46)
- 15. • n=95 patients with gyn malignancy & inpatient PC consultation for symptom management • Improvement in prevalence moderate to severe symptom intensity – between PC consult & discharge for: pain, anorexia, fatigue & nausea (magnitude 58-66%) – within one day of PC consult for: pain, fatigue, nausea (magnitude 50-55%) • Majority of improvement that occurred between consult & discharge happened within 24hrs of consult
- 16. • Model of routine care vs routine care + PC referral at time of diagnosis of recurrent platinum-resistant disease • Data from Temel et al informed creation of model • Early palliative care associated with – Cost savings $1285 per patient over routine care – ICER <$50,000/QALY – Assuming no clinical benefit other than QOL improvement, remained highly cost-effective
- 17. Palliative Care & The Society of Gynecologic Oncology (SGO)
- 18. Palliative Care & Ovarian Cancer: Christine’s Story https://soundcloud.com/get-palliative-care/a-quality-life-episode-1-christines-story
- 19. Outline: Palliative Care • What is it? • Why do we need it? • How can you get it? • Barriers • Next steps
- 20. Where can you get palliative care? • Primary palliative care: delivered by non- palliative care specialists • Specialty palliative care: delivered by palliative care specialists – In the hospital – In an outpatient clinic – At home • Home palliative care • Hospice care
- 21. What actually happens at a palliative care appointment? • n=67 patients with advanced lung cancer • 1st palliative care visit median 55 minutes (range 20-120 min) • Mean minutes spent (range) – Symptom management 20 mins (0-75) – Patient & family coping 15 mins (0-78) – Illness understanding & education 10 mins (0-35) Jacobsen et al JPM 2011
- 22. Center to Advance Palliative Care (getpalliativecare.org) • Quiz – “is palliative care right for you?” • Searchable provider directory
- 23. Outline: Palliative Care • What is it? • Why do we need it? • How can you get it? • Barriers • Next steps
- 24. Barriers to Palliative Care Integration • Limited availability • Poor reimbursement • Lack of provider education • Palliative care has a branding problem
- 25. Barriers: Lack of Provider Education • Survey 327 practicing gyn oncologists – Only 45% said training helped them relate to terminally ill patients & families • Survey 103 gyn oncology fellows – Quality & quantity of palliative care training rated lower than other common oncologic topics • Survey 29 gyn onc fellowship directors – 14% written pall care curriculum – 48% elective/required pall care rotation Ramondetta et al 2004 Lesnock et al 2013 Lefkowits et al 2015
- 26. Palliative Care Has a Branding Problem
- 27. Palliative Care Has a Branding Problem “How knowledgeable, if at all, are you about palliative care?” CAPC 2011
- 28. Branding Problem: Providers • Lack knowledge of specialty palliative care services & their benefits • Equate palliative care with end-of-life care • Patients unlikely to request palliative care referral, but open to it when recommended by oncologist CAPC 2011 Schenker et al JOP 2014 Schenker et al JPM 2014
- 29. Palliative Care Has a Branding Problem “One of the greatest remaining challenges is the need for better understanding of the role of palliative care among both the public and professionals across the continuum of care so that hospice and palliative care can achieve their full potential for patients and their families” Institute of Medicine (IOM) Dying in America 2014
- 30. Palliative Care Has a Branding Problem Age 25+ Age 65+ Very likely 63% 62% Somewhat likely 29% 28% Not too/Not at all likely 6% 6% “How likely, if at all, would you be to consider palliative care for a loved one if they had a serious illness?”
- 31. Outline: Palliative Care • What is it? • Why do we need it? • How can you get it? • Barriers • Next steps
- 32. Next Steps to Improve Palliative Care Integration for Women with Ovarian Cancer • Education • Research • Policy
- 33. Objectives • Define palliative care & differentiate it from hospice • List at least 3 evidence-based benefits of palliative care • Differentiate between primary & specialty palliative care • Leave with homework – familiarize yourself with palliative care resources near you (getpalliativecare.org)
- 34. Take Home Points • What is palliative care – “an extra layer of support” • Why palliative care – Because it improves clinical outcomes without adversely affecting survival • How palliative care – Getpalliativecare.org • When palliative care – Why not now?
- 35. Thank you!
Editor's Notes
- So delighted to be here today speaking to you about a topic that’s close to my heart. My name is Carolyn Lefkowits, I’m a gynecologic oncologist & palliative care physician at the University of Colorado Denver and I am fellowship trained in both disciplines. In my clinical work at the University of Colorado I do primarily gyn oncology and then ½ day per week I have a palliative care clinic at the cancer center where I see patients with all kinds of cancers.
- My objectives are that by the end of this session, you would be able to -define palliative care & differentiate it from hospice or EOL care -list at least 3 evidence-based benefits of palliative care for people with cancer -differentiate between primary and specialty palliative care -and I’d like you to leave with homework – that homework will be to familiarize yourself with the palliative care resources available to you wherever you are
- We’ll start by talking about what pall care is (and isn’t) Then I’m going to review some of the evidence supporting integration of palliative care into cancer care, or why we need it Palliative care can be delivered in lots of different ways, so we’ll talk about some of the ways you can get it We’ll go over some barriers to palliative care integration And then next steps toward improved integration of palliative care into the care of women with ovarian cancer
- What is palliative care? You may read lots of different definitions out there. The definition on this slide is from the American Society of Clinical Oncology…Palliative care includes therapies that address the multiple issues that cause suffering for patients and their families and impact their quality of life. Just to dispel up front a common misconception, PC is NOT synonymous with EOL care, can be offered concurrently with surgery, chemotherapy or radiation therapy, including when the goal of that therapy is cure.
- Here’s another definition that I like, this one is from the Center to Advance Palliative Care, I’m going to read it to you… In short, palliative care serves as “an extra layer of support” for women and their families who are living with ovarian cancer This phrase “extra layer of support” is one that comes from a public opinion survey done by the CAPC, where they found that the majority of people did not know what palliative care was, we’ll talk more about that later, but once it was explained to them, more at length, this short phrase resonated with people and I use it all the time with patients & colleagues So objective #1 was that you’d be able to define palliative care, I think the easiest definition to remember is “an extra layer of support”
- When talking about palliative care, I think it’s important to spend most of our time talking about what it is, as opposed to what it isn’t. But I want to make sure to drive home that point that palliative care is not synonymous with hospice care. Hospice care falls under the umbrella of palliative care. Hospice care, unlike palliative care, is only available to patients with a limited prognosis who are no longer pursuing disease-directed therapy, like chemo or surgery. Palliative care, on the other hand, is not limited in that way. So all hospice care can be considered palliative care, but hospice care represents only a small subset of palliative care
- This is a nice pictorial representation of an integrated model of palliative care, where palliative care is integrated into cancer care from the time of diagnosis. In reality, I don’t think the need for palliative care is necessarily a straight line increase over time, I think that line can go up and down over the disease course depending on need, but the point being that palliative care is a part of the equation from the beginning, as is advance care planning. And then for patients who ultimately die of their disease, hospice care near the end of life and bereavement care for surviving family after death are part of the spectrum of care and those elements, hospice care & bereavement care, also falls under the umbrella of palliative care.
- To get a bit more concrete about what palliative care is, what clinical services it provides, this slide contains the nine domains of palliative care as outlined by the American Society of Clinical Oncology, ASCO, and the American Association of Hospice & Palliative Medicine, AAHPM Palliative care includes… Communication & shared decision making Those conversations may include prognosis or advance care planning, or just decision-making at branch points in care when we’re choosing between multiple options, figuring out how we best match that patients values and goals to her treatment. Advance care planning: detailed discussion of ACP, benefits, barriers, is beyond what we have time for today, but it’s critically important, in the setting of a serious illness such as ovarian cancer that their loved ones and medical team have a sense of what that person would want for their care if they were suddenly to get sicker or be unable to speak for themselves Number 6 is coordination/continuity of care: this can be helping to coordinate a clear message for patients who have multiple services involved in their care. Also includes helping patients navigate the healthcare system. For example, helping match services available in the system to patient’s goals and values. Number 7 is appropriate palliative care & hospice referral – here palliative care referral refers to palliative care specialists, and, as we’ll discuss more later, not all palliative care can or should be delivered by palliative care specialists Number 8 is carer, or caregiver support Number 9 is EOL care
- So before we go on to why we need palliative care, just to review, palliative care services as an extra layer of support to patients and families facing serious illness. It can be offered concurrently with disease-directed therapy with the goal of improving quality of life. This distinguishes it from hospice care, which is available only to patients with limited prognosis who are no longer pursuing disease-directed therapy. Palliative care includes, among other things, symptom management, assistance with patient & family coping and efforts to improve illness understanding. Why do we need palliative care? In summary, because high quality evidence shows multiple benefits, to both individual patients & families, and the healthcare system, providing truly high value care. Now I want to review some of the evidence behind that assertion. I had a couple of videos that I wanted to show with this presentation, but from an AV standpoint we couldn’t get those to work for the webinar, but links to them will be available in the version of my slides that will be available online
- Let’s talk about the benefits of palliative care At this point there have been multiple retrospective studies showing benefits of palliative care with respect to quality of life, for both patients and caergivers, including -reduced pain & other distress -improved HRQOL -high patient & family satisfaction with care For patients who ultimately die of their illness, patients who have had involvement with palliative care specialists are less likely to die in the hospital, more likely to die at home or in another location that they prefer And palliative care is association with reduction in hospital & ICU LOS The question of how, if at all, palliative care impacts survival is a pretty hot topic. At the very least, all comparative trials that involve palliative care interventions have shown no decrement in survival. We are not shortening peoples lives by integrating palliative care into their care (I mention this because it’s a common fear, I think among both patients & providers, what if the palliative care providers just try to talk everyone into hospice? But that’s not how it works, and the data bears out that palliative care does NOT shorten survival)
- I’d like to tell you a bit about the most famous study of palliative care in cancer to date. These patients had lung cancer, not gynecologic cancer, but plans are underway to try to conduct a similar study with gyn cancer patients This was a trial of stage IV lung cancer patients, randomly chosen to either get Standard oncology care, oncologist could refer to palliative care specialist if she or he chose Routine PC from the time of diagnosis, patients would see PC team about once a month So this was NOT a trial of palliative care vs no palliative care. It was a trial of routine palliative care, from the time of diagnosis, vs usual care They found that the group that had PC from the time of diagnosis had -better QOL (this was their primary outcome) -less depression -for those who died, less aggressive care at the end of their lives And the study was not primarily designed to look at survival, but not only did palliative care not shorten patients lives, the patients who received routine palliative care actually lived LONGER than those who received standard care
- The trial I just told you about is the most well known among several randomized trials to have shown a benefit of early palliative care integration. Those trials taken together prompted the American Society of Clinical Oncology in 2012 to issue a Provisional Clinical Opinion on the Integration of Palliative Care into Standard Oncology care Their recommendation was that combined standard oncology care and PC should be considered early in the disease course for any patient with either metastatic cancer and/or high symptom burden They recently updated this document with latest trials, recommendation remained essentially the same
- I just want to quickly mention a few studies specifically in gynecologic cancer that support some of the benefits of palliative care. This is a study out of Brazil from 2014. They looked at a group of breast and gyn cancer patients (about half had gyn cancer) who were at the point of discontinuing anti-cancer therapy and they were all moving to purely palliative care. They compared patients who had already seen palliative care prior to reaching the point of discontinuing cancer therapy to those who were having PC introduced for the first time when stopping cancer therapy. So these were two groups essentially capturing the old vs new model of palliative care, where PC was mutually exclusive from vs integrated with, cancer therapy. The patients who had earlier integration of PC, which they called the integrated care model had -better QOL -less depression -less chemo w/in last 6wks of life -improved median survival
- This is a study we did at Magee, published last year essentially a case series of 95 inpatients with gyn malignancy who had SPC consultation primary for symptom management. We wanted to look at impact of PC consultation on symptom management. We didn’t have a control group, so we looked at timing of symptom improvement relative to timing of PC consult to try to establish that association. The primary outcome we looked at was prevalence of moderate to severe symptom intensity. That improved between PC consult and discharge for pain, anorexia, fatigue & nausea, magnitude on order of 60% And it improved within one day of PC consult for pain, fatigue & nausea, magnitude on order of 50% Though we couldn’t prove causation, we did note that the majority of symptom improvement that happened over the hospitalization happened within 24hrs of PC consultation, suggesting an association.
- Lowery and colleagues in 2013 looking at CE of early PC integration for platinum resistant ovarian cancer. They used data from the Temel trial to inform the model, which involved PC integration from the time of diagnosis of platinum resistant disease. Found that early PC associated with cost savings over routine care and even if we assumed no clinical benefit other than QOL improvement, it remained highly CE
- In light of the projects I just reviewed, and others, In 2013, the Society of Gynecologic Oncology, our national society, included palliative care in their choosing wisely list, which is a list intended to highlight either overused or underused services. They advised to delay basic level palliative care for women with advanced or relapsed gyn cancer and, when appropriate, refer to specialty level palliative medicine. This brings highlights a couple of points -first being, palliative care is an integral part of the care of women with gynecologic cancers -second, not all palliative care is provided by palliative care specialists. Which brings us to…
- How can you get palliative care? Before we go there, just to review, the reason we need palliative care is because it improves the quality of care. It improves quality of life, improves symptom burden, at worst does not shorten survival, may even improve survival. So how can you get it?
- How can you get palliative care? You can get palliative care from your oncology team or from palliative care specialists We use the term primary palliative care to refer to palliative care delivered by providers who are not palliative care specialists – that can be PCP or oncology team, doesn’t have to be physician, can be nurse, NP/PA, SW Specialty palliative care is palliative care delivered by palliative care specialists – providers specifically trained in palliative care, often involves an interdisciplinary team with MD, NP/PA, RN, SW, chaplain Specialty palliative care teams may be available in the hospital… Specialty palliative care can also be delivered at home in the form of home palliative care and hospice care
- So we talked in generalities about palliative care definitions and domains, but if you go see a palliative care provider, either in an outpatient clinic or a consultation in the hospital, what actually happens, what do they do? That varies from patient to patient depending on their needs within the multiple domains of palliative care But to give you an idea, here’s some data from the landmark trial of palliative care integration in cancer, which was done in the study I told you about earlier with lung cancer patients,
- The Center to Advance Palliative Care is a wonderful national organization devoted to palliative care, their website has a number of great features, including…
- Why doesn’t every patient with ovarian cancer get palliative care? Let’s talk about some barriers
- In terms of availability, there are not enough specialty palliative care providers in the country to provide specialty palliative care to everyone who might benefit from it. There’s a lot of talk in the specialty palliative care community now about how to target the available specialty palliative care capacity to patients who will most benefit from it. I think the specialty palliative care community sometimes jumps too fast to the solution that more palliative care should be primary palliative care, should be provided in cancer care by the oncology team. I think if we’re asking for increased attention to an element of the care of women with ovarian cancer, namely the palliative care element, by the oncology team, we have to increase that team’s capacity, in terms of both education and clinician time or clinician manpower, can’t just assume that an oncology provider who’s already seeing as many patients as they can fit into a day can suddenly start adding good high quality primary palliative care into their visits Next is poor reimbursement. I didn’t go into this today, partially due to time and partially because I think it’s far secondary to the clinical benefits, but palliative care has been shown to be more cost efficient at the healthcare system level, saving money in terms of shorter ICU stays, less intensive EOL interventions, again all without shortening survival. Despite that, given our current healthcare system model, not well reimbursed in a fee-for-service model, disincentivizing institutions from building these programs. I’m going to get up on my soapbox for one second and just say that I think if palliative care were a drug, that a drug company stood to make a fortune off of, and it had demonstrated benefits like it does, we’d be giving it to every single patient with cancer Next barrier is lack of provider education
- I think our training as gyn oncologists leaves us inadequately prepared for the role of primary palliative care provider One survey of over 300 gyn oncologists found that only 45% felt that their training had helped them relate to terminally ill patients & families -in that same study 77% of respondents felt that more training in EOL care would be helpful Another survey of 103 gyn oncology fellows, they rated the quality & quantity of their palliative care training lower than other common procedural & oncologic issues -in that survey 89% of fellows said they felt pall care was integral to their training but only 11% reported getting such training Finally a survey of gyn oncology fellowship directors, only 14% reported having a written curriculum for palliative care; encouragingly almost half said their program had either an elective or required pall care rotation
- Then the final barrier I want to mention is that palliative care has a branding problem – we think palliative care is the death squad right? This cartoon shows grim reaper as new palliative specialist
- Earlier I asked you guys this same question – how knowledgeable, if at all, are you about palliative care? In 2011 the Center to Advance Palliative Care conducted a survey of 800 adults in the US, oversampling people age 65 or over. They found that 70% described themselves as not at all knowledgeable about palliative care. Palliative care has a branding problem
- Pall care also has a branding problem with providers, who have been shown to lack knowledge of palliative care services & benefits and often equate pall care with EOL care In some ways, I think the branding issue with providers is both a tougher nut to crack, because whereas patients just have lack of knowledge, providers have existing misconceptions. And other research has shown that patients, even those with demonstrated unmet palliative care needs, are unlikely to request a pall care consult, though the vast majority are open to it if their provider suggests it Some institutions have taken to renaming their palliative care services or divisions supportive care, to try to avoid any negative connotations that patients or providers may have about the phrase palliative care. They did that at MD ACC and found that their referral rates increased after that name chance, so that’s something to consider
- The issue of how palliative care is understood, or misunderstood, is so important that in 2014 the Institute of Medicine, in their report Dying in America, concluded that…
- When those same people who started out not at all knowledgeable about palliative care were informed about what it is, using the definition we talked about at the beginning including the phrase extra layer of support, they had an overwhelmingly positive reaction So the public have tended to be uninformed, but when informed, tend to have a very positive view of palliative care
- Like any other area of healthcare, progress will require additional research, education (for both patients & providers) and education. We need education for both patients & providers about palliative care, what it is and isn’t, and normalizing it as part of cancer care We need research that looks at symptom management, how to best utilize palliative care specialists, how to best elucidate patient & family values and match treatment plans to those values We need policy that recognizes the contribution that palliative care makes to the care of people with serious illnesses, including ovarian cancer, and incentivizes its use This room is so rich with passion for the lives of women with ovarian cancer, saving them and I would argue that saving lives is not just about helping women with ovarian cancer live longer, but also helping them live better and I think that improving palliative care integration is one important way to do that. And it can be as simple as working to normalize palliative care as a routine part of cancer care among your friends and family and the communities that you live and work in
- Hopefully you now feel able to define pall care & differentiate it from hospice Familiar with some of the evidence-based benefits of pall care Feel able to differentiate between primary palliative care, delivered by PCP or oncology team, and SPC, delivered by specialty palliative care team For your homework, I want you to at least familiarize yourself with the palliative care resources near you so you know what’s available to you – you can do that by asking your oncologist, by looking on getpalliativecare.org
- Here’s a gratuitous picture of our campus and the mountains in the background, I’d be happy to take any questions