Monday, October 27, 2014
(This is the first of two reviews of the apparently fantastic inaugural 2014 Palliative Oncology conference. Please see Kristina Newport and Shanthis Sivendran's review for additional perspectives. If you use these conference reviews with your teams/orgs, please let us know in the comments below. - Ed.)
I've tried to summarize some of the key points from some sessions of this amazing palliative oncology conference! This post focuses on those areas which were clinically meaningful or could be easily implemented in palliative care programs; all of which I brought back to my team. (There were some presentations on research or complex interventions such as decision support or telephone-based systems which showed some impact but these are not discussed in detail here because they are not as immediately relevant). Some of my own takeaways are here as well as those of the many that I talked to at the conference - I've usually tried to put these in parentheses.
Look at the tweets as well - #pallonc - there are lots of great comments there!
Symptom Management and End-of-Life Care:
Anne Walling from UCLA presented on unmet symptom management needs for cancer patients from a large national survey. Unmet needs were defined as patients who had a symptom, stated that they wanted help for the symptom, but had not received that help from their physicians. 15% of patients had an unmet need - most prevalent were fatigue, dyspnea. Poorer communication was related to a higher risk for unmet needs for symptoms.
David Einstein from Tufts presented on a survey of residents about CPR discussions in advanced cancer patients and found dissatisfaction with the discussions - although residents were aware that the patients had very low rate of possibility of surviving CPR, a minority felt that it was appropriate for them to give a recommendation about CPR - they tended to feel that patients should make their own decisions. They didn't feel that they needed more training. More senior training year was correlated with a higher rate of including a recommendation.
Joanna Paladino from Dana Farber presented beautifully on how the interventions was implemented and barriers to implementation in early results of an advance care planning intervention in oncology involving triggers and a communication guide which was provided with the billing form.
This is based on best practices in advance care planning for oncology: start early; address information needs and prognosis; focus on values, goals, priorities, psychosocial concerns; well-documented. Not just filling out an advance directive.
Most oncologists (this was a volunteer sample, and small sample to date - early in the study) did do advance care planning with included patients and document this, although it often took multiple triggers. The most important oncologist-reported barrier to having the conversations was the oncologist feeling that the timing wasn't right or that there were other priorities for that visit (not having insufficient time to have the conversation).
In the discussion - the important point was made that we should set expectations right from the start in oncology - when the oncologist has that initial conversation, it is really key that they set the tone (eg, that this will be challenging, that the
Patty Ganz talked about the overlap between palliative care and survivorship - it really is a continuum and both approaches should incorporate elements of the other (we try to do some survivorship work in our palliative care clinic - preparing patients for the next phase or working with those survivors who have persistent symptoms or are still on a lot of extra medications for symptoms). This is a place we can help set expectations as well - there were some different opinions expressed on this; Dr Ganz was concerned that telling patients too much about side effects could set patients up to have more problems and thought that monitoring patients more closely was a more appropriate approach, whereas others during the conference stated that patients should be educated about potential side effects (such as fatigue) up front so they would be aware that these could be related to the cancer or treatment and report them.
Julienne Bower gave a wonderful session on fatigue in survivorship and the most current research on interventions and the ASCO guidelines for fatigue. My big takeaway was the importance of a multimodal approach - things like cognitive-behavioral therapy, exercise tailored to cancer patients such as restorative yoga. We refer a lot of these patients to our local community cancer support program which offers walking programs, yoga and other targeted exercise, and support groups, and sometimes to our integrative medicine program as well. She also discussed the importance of identifying risk factors since many survivors don't develop fatigue (and fatigue certainly varies
Tim Ahles spoke about post-treatment cognitive problems and the takeaway for me was the importance of evaluating for this in patients at high risk, which we often don't address well - in particular, older cancer patients with multiple conditions have a high rate of pre-existing cognitive impairment. We know that this can affect treatment, decision-making, and caregiving and the risks of the medications we prescribe for symptom management, and it would be important to be more cognizant of this and screen for it more frequently than we do.
Lynn Henry talked about aromatase inhibitor-associated musculoskeletal symptoms, which is also a common issue and one that we've tried to work with patients in our palliative care clinic about - it can be very debilitating, but now that there are multiple options, it may be worth rotating medications. Evidence for now is for exercise and weight loss - no other good evidence currently for effective interventions, although trials ongoing.
Skills for End of Life Care
There were many lovely moments in this session - I've tried to capture a bit of this below.
Anthony Back spoke about communication - including PAUSE for early - Pause: take a moment to initiate, Ask permission (explain why), Understand (ask about values), Suggest: find a surrogate -Emphathize - expect emotions. Check www.vitaltalk.org - there are suggestions for how to do all of this.
A key point is that there are ways to respond to statements such as "I only want to talk about positive things" - using empathy, asking more questions about what they mean by positive is an opportunity to ask about meaning and values and also what they're scared of. REMAP is the acronym for late EOL: Reframe (status quo isn't working), Expect emotion (empathize 1st), Map: what's important, Align: with deep values, Plan: match treatments to values.
Tony's key message was to start by giving ourselves a reminder (and to ask others to give themselves a reminder) to start doing one of these things with our patients. (What I always try to do, and ask others to do, also is to take a moment in every encounter - or at least, in every day - to reflect on this and make sure we're being present with where our patients are - and with what they are really saying or feeling.)
A couple of nice points - "do you have any pictures of that on your smartphone?" a way to connect with the patient. He also recommended the movie, "Boyhood".
BJ Miller gave us some perceptions from his Zen hospice perspective - reminded us that bringing in extra disciplines is critical (others reminded me of this is critical - bring in the SW and chaplain! - we need these other disciplines to do good palliative care, although many of us don't have good access, we need to keep working on that). He also talked about suffering as a universal experience and something that we can all relate to with our patients, and that there are many other types other than the physical/ prescribing medications, and that this is often what we are afraid of when we talk about dying, rather than the dying itself. (I have many patients who will say that it is the pain that they're afraid of - and it's important to empathize with this and state that we will be there for them if that happens and that there are many things we can do, rather than try to promise that we can prevent this). He reminded us about music, art, poetry, film, nature - all the incredibly important aesthetic things we can do to help relieve patients' and families' suffering (and our own as care providers). We need to pay attention and listen.
Integration of Palliative Care into Oncology
Jennifer Temel spoke about the increasing challenges of prognostication in oncology - that this will become more and more individualized and dependent upon patients' responses to treatment - need to work closely with oncology colleagues to communicate about prognosis, especially early in patients' cancer care. (It also depends on many factors that may not be in prognostic tools and on trajectories over time, which the longitudinal oncologist may better address). She also spoke about the critical importance of individualizing palliative care, which others also addressed at the conference - it's not one size-fits-all, and often needs to change over time. She also spoke about the infeasibility of implementing these very intensive palliative care interventions from the Temel and Zimmerman clinical trials into practice in most settings. She also stressed that even when the oncologist is very skilled in palliative care, there is often still a role for palliative care - the patient may not want to/ feel comfortable discussing these issues with the oncologist who they're afraid might stop chemo or are their hope for improving survival - and the patient may be willing to address these issues with a palliative care clinician. It really should be an integrated/collaborative care model, not a referral model to specialty palliative care. (One comment was the more palliative care you have, the risk is that the oncologists may be doing it less themselves - Ifor example: when an oncologist doesn't deal with the pain at all, and the patient suffers for 2 weeks until the palliative care appointment happens. Just something to watch out for).
Jamie von Roenn - "Palliative care ALWAYS" - anticancer treatment sometimes". (This approach might make our fellows/oncologists/radiation oncologists more comfortable with the fact that with offering palliative care interventions, such as symptom management, they are always doing something for the patient.) Also, she made an impassioned statement that often when oncologists say that the chemotherapy is "palliative" - we should really be using this term for chemotherapy which is given with the primary purpose of relieving symptoms, which is rarely the case - if it's given with the purpose of increasing survival, for patients with symptoms unlikely to be helped by the chemotherapy (or where the chemotherapy is more likely to make them feel worse), or when the patient is taking the chemotherapy with the intent of cure - we should not be calling that palliative chemotherapy.
Dr James Zabora gave the SW/psychosocial perspective and focused on the importance of the availability and use of psychosocial interventions, many of which have a strong evidence base. He discussed the PLISSIT approach to evaluating sexuality - that we should be asking about it more, and the first step is asking permission - and the HOPE approach to spirituality. He really focused on using a problem-solving approach, which includes specific skills, rather than just addressing coping, and discussed that there were many psychosocial interventions with a strong evidence base (that may be available through community-based cancer organizations if not at your institution).
There were a lot of great posters and the discussions and environment were very stimulating - I didn't get to see a lot of them, but they should all be available through the virtual meeting - here are a few that stood out. In particular, there were many posters on integrating palliative care into outpatient oncology in a variety of settings and countries with many perspectives, such as the poster by Mary Buss - a key point that I took away is that many people are doing this, but it is likely most practical/appropriate for patients later in the course of the disease, rather than at the time of diagnosis, in actual practice, given limited resources and the challenges of screening effectively. Sarah Livermore presented on the use of delirium screening in outpatient palliative care using a newly validated tool, the FAM-CAM, that I am going to go back and try.
And a shout out to my great colleagues from Hopkins - our oncology palliative care team, presented by Colleen Apostol that screening cancer inpatients at risk for critical care and promoting goals of care meetings for those patients was associated with reduced use of critical care and increased use of hospice. And from one of our fellows, Isaac Bromberg, that only half of oncology inpatients who went to acute rehabilitation ever got more chemotherapy, and of those who didn't, almost all died within 6 months - so that consideration of acute rehabilitation should include consideration of palliative care consultation as well.
The palliative oncology conference will be in Boston again next year - it sold out before the early bird deadline - I highly recommend this conference and if you're interested, be sure to sign up early! And for those of you who are not physicians - there was some interdisciplinary content, but could certainly be much more - would be great to see some other types of professional societies (eg, HPNA) be involved as sponsors of the meeting and have more presentations from other specialties, as we have with the AAHPM-HPNA meeting. There is also a virtual meeting available (pallonc.org/arc) and many of the posters, etc are online.
Sydney Morss Dy, MD, MSc is Physician Leader, Harry J. Duffey Pain and Palliative Care Program, Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, where she has had the great good fortune to work closely for many years with clinical pharmacists, pain specialists, social workers, and a psychiatric liaison nurse, who have taught her much about pain management and the use of opioids.
Photo Credit: @Ctsinclair via Twitter
Photo Credit: Werner Kunz via Compfight cc