BTD2019 Palliative Care

BTD2019   Palliative Care



good morning everyone my name is Jennifer Shen I'm a palliative care doctor and an oncologist at Massachusetts General Hospital and it is truly such an honor and such a privilege to be with you this morning to spend some time thinking about the intersection of cancer care palliative care mental health and really bridging this divide as Kelly says and how do we really think together about how to equalize care and provide excellent care to all of our patients and today with a focus on those with severe mental illness it's really an honor to be here to introduce and to moderate this panel of amazing women who will be here to discuss both case presentations of patient stories and also to hear some presentations from from from dr. Jackson and dr. chat Mayer about palliative care and also about the intersection of social work and palliative care and so with that and actually I really want to as you're hearing these patients stories and narratives and these presentations we will open up the panel for a discussion and I'm looking forward to having a rich discussion with all of you and we'll welcome some questions from all of you as well I'm so to start MS Berlin Okwe is the community outreach nurse at North Suffolk Mental Health Association after graduating from nursing school miss aqueous interest in health policy inspired her to pursue a degree in community health and sustainability and an mph and she's now pursuing a degree as a Doctor of Nursing Practice she has conducted research and the social determinants of health in Cameroon Africa and has also studied integrative care between psychiatric and medical services at the North Suffolk Mental Health Association for the past eight years MS Okwe has worked with adults with co-occurring mental and medical disorders primarily as a liaison to their medical team and as a group home manager she recognizes the urgent need for clinicians to collaborate across healthcare delivery and is here to present our first patient narrative thank you Miss ugly [Applause] good morning everybody and Wow this is quite different from last year I think we're moving from one level to the other and thank you dr. Irving for organizing this and I like to crack a joke that if you haven't realized that I have an accent then I don't know what planet you're living in so if you can understand me just not the person next to you and ask what did she just say that's okay so the patient narrative I'm about to present is not a narrative of despair it's a narrative of Hope because we are making advances and with programs like the one led by dr. Irwin will making sure that the gap between adults living with serious mental illnesses or even children living with serious mental illnesses the mortality gap is narrowed every single year so I don't want you to be sad I just want you to know that this is possible we can do it and we need each and every one of us to have our hands on deck in order to get this accomplished so this is the story of a 58 57 year old unmarried gentleman with chronic schizophrenia cardiovascular disease and severe COPD living in a group home designed for adults with serious mental illnesses and increased medical complexity he was isolated from his family for several years and his group home staff was the family he had and his support system he was diagnosed with advanced stage cancer a few months to his 55th birthday as it will be expected he was cleared of the unknown past trauma from health care system several decades earlier contributed to his fear of losing control and be abandoned his schizophrenia in two interfered with his ability to understand the severity of his cancer diagnosis his cancer team told him that his cancer could not be cured and that he had two options to try to slow the cancer or focus on comfort he said okay okay every time we went to those appointments but the moment we stepped out of the room his question to me or any of the staff that accompanied him to his appointment would be what did they mean does that mean I'm going to die how soon am I going to die he believed that his care team was overreacting when they suggested that he start treatment right away eventually he got radiation after radiation he felt comfortable and he got chemotherapy and after completing chemotherapy he decided he wanted maintenance immunotherapy and he tolerated all treatments extremely well many mornings he struggled and did not wish to get out of bed or leave his home he declined care even from his group home staff and wanted to take on his day as he would normally do before his cancer diagnosis six months later his cancer progressed he was tired and he had multiple fours he had multiple times when he did not even want to get out of bed for a shower and he just wanted to stay in bed his primary care doctor sent a palliative care nurse to speak to the group home staff as his cancer got worse and he felt more tired he was more able to understand how sick he was working with his oncology community mental health and home and home visits from his primary care team the patient decided to change his coach status to do not resuscitate and do not intubate at this time he became more open to discussing his cancer care goals and often he had many questions for his group home staff and his community mental health care team he would often ask how serious is this cancer how long would I leave but every time he added those questions our response to him would be what matters to you most and in the course of these discussions he was able to identify four important goals for his cancer treatment he wanted to be comfortable he wanted to be pain-free and he did not want any IV lines on him he wanted to be independent and by independence a walk to the neighborhood coffee shop was all he wanted he did not want somebody to go to the store for him he wanted to be able to make that walk to the store and get his own coffee he wanted to reconnect with his family and above all he wanted to die in a place he called home surrounded by his group home staff while the patient seemed comfortable that he was approaching end of life his community mental health workers struggle with the idea that his cancer was terminal each team member needed to come to terms with their convictions about palliative care as there was a general confusion between palliative and hospice care thankfully the patient's primary care on oncology and prayer and psychiatry teams were available to discuss with staff and clarify what palliative care is after staff accepted that he was going to die they were more able to support him to focus on meeting his own goals this was not as easy as it sounds there were times staff would retreat to the office and like we can't do this but dick nevertheless strove on this was challenging it was hard to communicate communicate across multiple teams and it was hard to make sense of the patient wanting to get treatment that could make him feel better but also not wanting to get out of bed in the morning we strove to support the patient's wishes and prevent him from getting hurt 12 months to 18 months is the life expectancy estimate for people diagnosed with his type and stage of cancer but like everything else in life and estimate is just that an estimate this patient made it to 30 months stayed active in the community and despite becoming weaker never experienced severe pain he reconnected with his family and went out on multiple outings with his family members and finally he died where he wanted at home after one final trip to the corner shop to the corner coffee store grabbing his coffee and taken his last sips and he went out as a pro and he will always be remembered so it is not a story of despair we can do this but we all need to be on board [Applause] thank you ms aqua I you know I I love the way that you opened which is you know this is a narrative of hope you know we are all here because we have hope and that we can make things better and that we can do this together that we can spread the message and bring people in and it's so powerful it's so powerful I think you know when I hear that story and thinking about there's so many different highlights that I think dr. Jackson will touch on as well but this idea of you know what does the patient think when they hear something and when the doctors step out of the room and what are the questions that happen and and who do you turn to and this idea of as as the disease evolved being more open to discussing goals and what matters most and I love what you did as a team which is not just to identify in vague terms what matters most but really specific things you know being able to get to the coffee shop and where he wants to die and who is his family who does he want to to be with when he goes and when he gets sicker and is nearing the end of his life and that you know at the end you were able to actualize what matters most to him so again we will have a lot of time to touch on a lot of these themes but I think that that patient story really segues beautifully into our next speaker who is dr. Vickie Jackson she's the chief of the division of palliative care and geriatric medicine at MGH associate professor in the department of medicine at Harvard Medical School and co-director at the of the Harvard Medical School Center for palliative care dr. Jackson is the palliative care lead investigator and mentor on several studies funded through the NIH NCI and NCCN investigating the effect of early ambulatory palliative care for patients with advanced cancer and dr. Ryan had mentioned one of the the big studies that dr. Jackson had been involved in almost a decade ago she has worked with hospital leadership at MGH to develop the palliative care continuum project which seeks to disseminate excellent palliative care for seriously ill patients at MGH through patient engagement comprehensive advance care planning and primary palliative care edge for clinicians across the health system she also currently serves as a member of the board for the American Academy of hospice and palliative medicine I will add that dr. Jackson I'm just recently won the Clifford Barger excellence and mentoring award a very prestigious award at MGH and is truly a role model for her whole team at MGH and for all of those who work alongside her dr. Jackson thank you thank you so much it's such a pleasure to be here let me just pull up my slides here all right so I have no financial disclosures I am hoping that today we can define the difference between palliative care and hospice gain an awareness about the data supporting palliative care integration into oncology define this core concept and palliative care called prognostic awareness and think about it specifically in the setting of mental illness so this is a critically important topic and it is really important that everybody in the room is part it we all have to do this together this is not just the oncologist or the palliative care person or the social worker doing it it is all of us everyone who cares for these patients in any setting and to talk a little bit about how we help patients as Kelly was talking about as Susan Sontag talking about living in two worlds holding this dual framework of living well while they also have this deeper awareness that dying is a possibility so what we know from the literature is that patients all patients are really clear that if they're living with serious illness they want more things than just living longer it's not just about life prolongation at all costs and I think one thing that's tricky in the mental illness context is there are times when that patient who doesn't want to get out of bed you wonder if they didn't have a have schizophrenia could we engage them in some other way which i think is an important question it's also an important question even in this golden age of oncology treatment there are many patients we can't cure right both things are true and we have to have a deep understanding if living longer isn't possible or even if it is what other goals are important and the literature suggests patients want exactly what this patient who is described just now wanted they want relief from pain and other symptoms they don't want to be a burden on their family or their loved ones they want to have as much control as possible often in an illness that robs them of control they want to strengthen relationships with loved ones and they want informed shared medical decision-making with the care team and most patients will say to me hey Vickie if I'm living help me live but if you actually think I'm dying don't make that die in part longer right but then the question is how do we know if we're living or we're starting the dying phase right and that requires a really open clear dialogue with the team so I'm going to start with just a couple definitions about what is hospice and what is palliative care because it's super confusing for people and so we can just put it to rest so Hospice is actually a medical insurance benefit that require and it's meant for people in the last six months of life so a doctor two doctors have to say yes we think if the illness takes it's likely course the patient would live less than six months in most situations it is difficult for patients to get chemotherapy or disease modifying therapies like radiation while they're on Hospice it's not impossible but it's it's quite difficult Hospice can be provided at home including a group home in a hospice residence or facility depending upon what's happening and the insurance that the patient has I think it's important to know it is the gold standard of end-of-life care a very end-of-life care so if someone's suggesting hospice to your patient don't think that that means they're giving up on them it may mean that they actually think that is the best way to get them care in that last few months of life now what's palliative care palliative care is a medical subspecialty for people with serious illness and their families it's a very holistic approach my job when I walk into a patient's room I say my job is to help you live as well as you can for as long as you can so I work on improving quality of life as defined by the patient it's appropriate for any age and diagnosis any stage of treatment and happens at the same time patients are getting disease-modifying therapy so I see patients who are getting bone-marrow transplants I see patients who we think will be cured from their cancer but have terrible symptoms I had a patient I saw on Tuesday he's got a tumor in his pelvis and he can never sit down that's not great quality of life right so even though he's likely to live 20 years with this cancer I see him to try to help improve his quality of life palliative care is an interdisciplinary team and we think about ourselves like an extra layer of support so we're with the oncology team together in the deep end of the pool trying to help this patient and family do as well as possible so I would say for all of you who are trying to think about the messaging it's really important that you're clear about the messaging about what palliative care is and what it is not so yes it's for seriously ill patients it doesn't mean that they have to be dying okay it's about matching goals and values about what's important like this patient wanted to get to the coffee shop awesome goal I should be helping the team help him be able to actualize that goal it's not about giving up it's it's an extra layer of support to the team it's not about rationing care and I see myself as my job is to empower patients to have your voices their voices heard and I would imagine that every one of you in this room feels like that's part of your job too so know that palliative care can partner with you it is not the thing that we start and we call up when we're like oh there's nothing else to do if we wait until then we have messed missed our opportunity to really partner to improve quality of life I would also say that question that was asked of this patient what matters most to you is brilliant and that's what we do in palliative care and each of you should become facile with doing this is not about death panels or refusing people the care that they want or need it is about making sure that they're getting what's important to them so Dave mentioned the study that we did at MGH which was a study for patients with advanced lung cancer with metastatic lung cancer we saw patients at the time of diagnosis and then monthly until the end of their life and there were multiple outcomes of that study that were interesting one was that patients had improved quality of life which thank goodness that's my job would have been super embarrassing if that weren't true but so they felt better the thing I'm probably most proud of is they had a 50% lower rate of depression so if anyone tells you that talking about these things makes people depressed and give up not supported by the literature stop that myth right now now in this study and the reason it got a ton of press was we showed that patients who had early intervention palliative care actually lived about three months longer we didn't look at survival as an outcome because we thought we prolonged life we wanted just to make sure that the survival was the same in each group because we knew people would criticize us and say sure Vickie you made him feel better but you know they they died six months earlier but that is not what has happened so what do we do what's in the palliative care syringe we spend more time assessing the patient's understanding of prognosis and treatment and we're one of 20 conversations or 40 conversations that happen with these patients we might be 10 of those conversations to help them really understand and make sense of what's happening so I would say a central goal of early integrated palliative care is to cultivate prognostic awareness and I and and will define that I would say this is important for patients and families and it's also really important for all of their clinical team who cares for them and I would say uniquely if a patient's been living in a group home for 20 years that family just like we heard in this story have to come to terms with that too and be able to figure out how to have conversations with the patient so the concept of prognostic awareness is this dynamic understanding of one's life expectancy or illness trajectory and why is this important because patients when they have a deeper awareness can weigh the burdens and benefits of treatment they can have more meaningful discussions about their goals and values and they can match their treatment decisions to their goals and values and empowering patients to live well is actually part of what we all need to be doing this whole idea of helping a patient make a decision about resuscitation preferences patients make really different decisions if they think they're going to live ten years or if they're gonna live ten months right that just makes sense if we think we can cure something a patient may be likely to go through very very difficult treatment for the chance of cure they're less likely to want to go through really aggressive treatment if it is if it means that they could live a month longer two months longer so we have to figure out how do we as a team have these conversations I'd say one thing that has just become really clear to me is within the setting of patients who are not living with serious mental illness and I would imagine it's even more true with patients who are is that this integration happens over time this is not something anybody makes sense of immediately and it's impossible to live with an awareness of your term analogy every moment of every day and so there are times when patients will be able to talk about it and times when they can't and that doesn't mean that they're not doing it the right way that's just normal because this is overwhelming and I think what's hard about that is sometimes I'm in the room with the patient I'm like are we on a day where we're going there or are we not going there today right like I have to figure that out and I would imagine it is even more and I have seen this even more powerfully true in the setting of patients with with chronic mental illness on Tuesday as a woman who had a sort of long-standing psychotic disorder Nos kind of thing and what was really fascinating is when she could go and have these deeper conversations during our our time together and when she couldn't and I just had to be nimble it was like a dance and making sure that everybody else on that care team knew what she was capable of had where she was in them in that moment I think the other powerful piece is that this integration and prognostic awareness we as a team have to have an understanding so the idea that the hope that the group home folks really struggled makes sense to they need to cultivate prognostic awareness and how the patient is making sense of their illness as well so we think about this sort of prognostic awareness as a pendulum that we'll start out thinking you know I'm doing fine I don't I'm healthy I run I'm okay I'm probably gonna do okay with this illness and over time as we heard with this patient their body starts to give them cues that things are different right and that he felt more fatigued and had a sense that maybe this was not going to maybe he was sicker and he was able to then integrate and have a different conversation so I want to introduce you to a patient of mine who I cared for her name is Betsy she's not a woman who is living with severe mental illness but the reason that I want to show you a couple video clips is I want you to see how hard this is for somebody who has good health literacy does not live with chronic mental illness and also has a great support system so let's take these concepts and think about how do we translate them into patients who have severe mental illness so patients are ambivalent about having these conversations and let's hear what Betsy said you'd been unclear about whether you really wanted prognostic information right because can you talk a little bit about that about your desires for prognostic information and how you thought about love to talk about that because I think it's actually really really important for doctors to know that anticipation I you know as a patient with a brain I think I should know all about my help and all about my health care and all about prognosis and outcomes and all that I think that's the right thing to do and then I ask a question and I realize I don't want to know the answer but I've already asked a question and the informations out there and then I'm devastated so I think that when doctors give when they hear a patient ask a question I hope that doctors think very carefully about why is this person asking this question and how much information and can I give this information even though it horrible information in a hopeful way so I think when we think about the patient we heard earlier this is about both things it's about this is where we are and let's get you to the coffee shop like that's a really hopeful important thing hope doesn't need to be only cure or living longer right so we all need to think about this shift and the reason we want patients to have this deeper prognostic awareness is it does change the medical decisions they make I think when we think about this as our job everybody in this room it's not saying that the patient's going to say great I'm gonna have a kumbaya death and I'm cool with that that's not what we're saying we're saying that we're able to have the patient hold both realities that dying is possible and if that is possible what does matter most to you what's important to you in that context and patients often over time can begin to hold these two concepts more closely more intimately and it informs their medical decision making so I would encourage each of you to think when you're working with patients with with a serious illness and a serious mental illness to think about this framework that we use in palliative care which is assessing their prognostic awareness trying to help them hold both of these concepts helping them focus on living and whatever living looks like for them while they also acknowledge dying and this assessing prognostic awareness we may ask what's your understanding of your of your illness we would maybe say what are your hopes in light of your illness I find that some of my patients who I care for who have severe mental illness that can't that question can be too abstract sometimes for them so this question that was asked like what matters most you is really helpful or what do you need right now or that we actually as clinicians who are in those group in your group home with these patients you know what matters most you see it every single day and that's how you advocate for these patients and is there a way for them to talk about their worries so helping them hold both of these concepts this dual framework where they're able to have a space for talking about their worries talking about their worries does not mean you're making them hopeless that's an important thing to remember so how do we align with hopes and how do we help cultivate this dual framework sometimes I will use ways to say I'm glad you're feeling really well and let's think about how we can get you to do these things that are important to you I also work to empathize with the experience it's hard to have an illness we can't cure sometimes patients need to hear that piece of information many many many times and it doesn't matter if they have mental illness or not coming to terms with one's mortality is very very difficult I'd say another piece that's super important is figuring out what does living mean for the patient and focus on what that is and how can we help achieve those goals as we said in this case that is what is helpful I'm going to sort of move through these slides quickly just because I want to make sure that we have time for the for the continued discussion so we think about focusing on living in multiple ways one is making sure that symptoms are in good control and that we're helping patients cope well manage their worries and do the things that are important to them I think Tara's gonna speak a bit about the role of social work in this space guitar and Amy and I think thinking about all of these coping strategies that you think about all the time we should be especially employing in patients when they're really struggling in this space another piece that I think is really critically important is remembering that we can be hopeful with them too so sometimes patients will say to me I hope I can't believe that I could die from this I'm really hoping they're wrong I think it's really okay to say boy I hope they're wrong too right I'd love to see that happen and how do we live with you today like what do we do right now and I think all of all of us who are living with these patients need to feel comfortable going there with the hopes and with our worries and acknowledgement that the dying piece actually could be possible and so this acknowledging dying helps people integrate it helps them actually discuss the possibility in a way that helps make it safer and I would say the people who know these patients best whether they're family or you're in the group home if we can't tolerate having these discussions we are telling patients really clearly that this is so scary that nobody can talk about it and that is a serious problem so part of what I would say is to be the advocates that you are in every single area of this patient's life this means getting skill in this space too so you can act so you can clearly clearly advocate for them I'm going to just show this quick last video as I finish up and to say that this concrete thinking that happens happens for all patients and so don't be surprised if this actor you see this in your patient population because we see this in patients who are not living with serious illness one thing that I remember it was many times in an outpatient clinic you'd ask a question and I would say is this information you want to know because there aren't any right or wrong answers and most of the time you said I don't want to know right and when you were in the hospital and Tim was coming to visit you said I think I need to know because you wanted to be able to give him some sort of grounding in it and I think do you have a sense of what changed for you in that or how because I think you're right most patients have exactly what you're describing which is they like know they're supposed to be the good do be patient who knows all this stuff and is an informed consumer and then in their heart of hearts like listen I don't really want to know what this cuz I don't know that's gonna help me but it's it seems like there was a shift for you and it seemed to my experience it was it was around talking to your children it is right I I have felt that the kids especially my son was overly hopeful uh-huh that he thought I was gonna be cured right and I needed him to know that this was not going to happen I needed him to have a little bit of reality dose and I think he got it but it was it was hard because you know he he wants the best to have here something and so I asked so I could deal with him right but now I'm back to I don't want to know right interesting yeah and what I hear in that is that you are holding the fact that this can't be cured and living very fully as fully as you can day-to-day but don't feel like having many more any more clear prognostic information would be helpful to you know it isn't helpful I mean we are for where we are yeah I had a cat scan not too long ago and I told the care team I don't want to know the answers I don't want to know the results they aren't gonna do me any good at this point so let's just keep that from me mm-hmm that's fine so I think the thing to know about this is even patients who have not been living with serious illness or mental illness have not been living with the trauma inflicted on them by the medical system still are ambivalent in this way so don't be surprised when your patients who have had those experiences feel that way and our job is to work with them to help them begin to have a language around this so we can help them figure out what matters most to them and empower them to do that so thank you and I'm so incredibly grateful for the work that each of you does to help patients living with cancer and with serious illness and with serious mental illness thank you [Applause] hello can you guys hear me from thank you dr. Jackson it was snowy cumple I think to have this idea of the end the definitions what are we talking about this idea of hospice and palliative care and how to really define them in ways that make sense to pay to our patients to our clients and the data to support palliative care as well and then this this larger issue of really prognostic awareness what is it and how do we use that to empower patients to make decisions that that that make sense for them in their lives that's actually a good segue into one of our breakout sections later this afternoon is going to be a little bit about how to use those questions that dr. Jackson mentioned and then how to take that home with you guys so that'll be kind of one of the workshops this afternoon just back into one of the earlier concepts that you brought up about early palliative care I think a lot of people probably the audience are like yeah you know we want that for our patients too I think dr. Jackson and many visitors have done a lot of work about early integration of palliative care into patients Cancer Care and I can only imagine that that's already hard in your general population getting palliative care in the door early and now this idea of how do you get palliative care in the door early or even in the door period even at the end of life for patients with severe mental illness and if you had any girls wisdom about joining up yeah so I think one piece is just the language that each of you uses so if you say hey I want this other person to help us take good care of you that is huge a huge endorsement right one thing to know is most many hospice agencies now have got a palliative care arm where they will actually you don't need to be the patient does not need to be enrolled in hospice but will come see patients in their home setting as an opportunity I think to work not only with the patient but the family or the members of the group home knowing that this is a this is a big team sport so I guess I would say start by advocating and asking the clinical team in your area what is possible and then looking to see what agencies might be able to fill that need because they're out there but most don't even know to ask okay I think that I thank you so much dr. Jackson for your presentation and for giving us a lot of pearls of wisdom of how to move forward I think that Segway is also really nicely into this idea of our next patient story and narrative which is this idea that MS aqua also touched upon as well this idea of team and and what that means and that you know it's a much broader sense I think in patients with a severe mental illness I think in your when I when people often think about patient-doctor relationship there's the patient and maybe the doctor and the nurses but in somebody with severe mental illness this idea of team is much broader you know it includes you know the Social Work team the therapists the psychiatrists the group home staff the people that take the patients to and from their visits and so this idea of team is much broader much bigger and our next speaker will actually present a patient narrative that really touches upon this idea of team and family as well and it is my pleasure to introduce miss Amy Khor vine she is a social work case manager with the collaborative care and community engagement program which is a clinical social worker at North Shore Medical Center Partners HealthCare and is also a clinician in private practice MS core villain is a licensed clinical social worker she has worked with people with cancer mental illness and their families for 14 years miss corlane is the assistant director of the collaborative care and community engagement program at Mass General Hospital she works as the social work case manager for the bridge trial of patients of person-centered collaborative care led by dr. Irwin which aims to improve cancer outcomes for patients with cancer and serious mental illness by promoting collaboration across disciplines ms coralline is a member of the stakeholder board and steering committee of the engage initiative as well she is passionate about improving outcomes for people with serious mental illness and cancer meeting people where they are and engaging social workers in research and advocacy she's actively involved in the association of oncology Social Work and the American psychosocial oncology society as well miss corlane thank you [Applause] Thank You dr. Shen so I'm gonna talk a little bit about a patient and sister that I worked with to give you a little bit of the caregiver perspective and the work that I do as an oncology social worker so Jane is a 68 year old woman who is living with her sister in a suburb close to Boston she was diagnosed with cancer at the base of her tongue requiring seven weeks of chemo and radiation and in her 20s she was diagnosed with bipolar disorder she was really struggling with dementia and memory loss when we first met her and at times she wasn't completely aware of her cancer her sister on the other hand was fully aware and had a lot of questions and needed a lot of support so it became pretty clear that my role was going to be not just supporting Jane but also supporting her sister Sarah so when Jane was in the hospital with complications related to her breathing Sarah immediately pulled dr. Irwin and I aside and said I need a team meeting immediately I need to know what's going on I need to know when she's gonna die really was very direct about needing a plan and we're sitting with Jane who really did not seem concerned about what was ahead she was very disappointed that she had to go to rehab and that was gonna be really difficult for her and and Sarah was not happy about that either so we sort of had this moment where we could see that Jane did not have as much of the awareness of her illness and Sarah had almost too much awareness so we were able to give her some answers and it was really my role to stay in touch with Sarah as much as possible which sometimes was multiple calls a day and you know what happened was we really saw that Jane was kind of giving her sister one story and she was giving our team another so she would tell our team I want to be in the rehab that's where I feel the safest and I want to complete my treatment and then she would actually then turn and call her sister and say you have to get me out of here I hated here the food is terrible and then her sister would call me and say why can't she get her out there she's in a horrible place why aren't you doing your job so we really started to think like how do we have these complicated discussions seeing that they are not always on the same page and what Sarah and I came to understand is that she really you know Jane just really wanted to make both of us happy she wanted she could see that it made our team happy that she stay in the rehab and it made her sister happy that she'd be home so that's just an example of how sometimes the caregiver and the patient are not on the same page Sarah was the OL what is the oldest of six siblings and she has been the caregiver to all of her siblings throughout her entire life so she has always been the one that everybody goes to and I imagine that that is really hard to be the one who's always responsible for everybody two of their siblings had already died of cancer one was struggling with substance abuse and now she was faced with having her other sister who was living with her and she's very close with also going through an extremely difficult cancer treatment so her Jane's goals of care really varied as I said and and she really just wanted to be at home so as soon as we got her out of the rehab she was happy being at home but she then didn't want to come back and see the team and so it was hard to get her to come back for her scans to know whether she was taking her medications because even though they lived in the same house they really lived very separate lives and Sarah was adamant that she was not going to drag her into the hospital she said I'm not gonna make her come she said she doesn't want to come I'm not making her come said okay well we we may need to work on that because we don't know what's going on with her we don't want to know what medications she's taking so really building the relationship with Sarah was the key to having the conversations then with Jane talking with Sarah about what would she want for her sister's life if things got worse what would you know would she want her to stay at home and that changed too so I think to dr. Jackson's point you know it's about having these conversations again and again and again and it can feel repetitive but really the person you're sitting across from is sometimes hearing it the way you're saying it for the first time so it's okay to to repeat it and to say it again and again one day Sara called me on the phone and she was very scared she was not angry at me which was a little bit of shift so and she said you know she's not waking up she's not eating I don't know that she's taking her medications I don't know what to do and I talked to dr. Irwin and we said you need to call 9-1-1 and bring her to the hospital right now she said well she won't come and I said well then we've you've got to make her come or the ambulance will make her come and you know once we got her to come in and she was able to get hydrated and and be thinking a little clearer I said to her you know I said to I such a Jane you know what what matters to you we're working really hard to get you to come in what matters to you she said I want to be at home with my cats I don't want to be in the hospital I don't want to be in a rehab I said all right that's good for me to know because what we can do it what your part is is to drink water and eat what she can and when I call you you need to answer the phone and tell me how you're doing and we're gonna have a nurse come in if that's really what you want then let's make that happen and I think that that really made her feel better and it made her sister feel like someone was answering on the other end I think a lot of times caregivers just need to know that someone's gonna pick up the phone and listen and so I know that we have many clinicians in the room today and I hope that some of what you'll learn today will guide these discussions I also know we have people living with cancer and their caregivers in the room today and I hope that some of what you learned today will be that you can have these difficult conversations with the people around you who care for you and that you can know that they may repeat themselves a couple of times but that they're really trying to figure out what matters to you most [Applause] thank you so much mr. wine for the this patient narrative I think it just highlights so much you really can't talk about palliative care and not talk about the team and our Social Work colleagues that really help support patients and their families and again this other theme that really has been woven throughout this morning already which is you know finding out what matters most and how to make a plan to make that happen and as as you said mr. core valiant you know this idea of that really resonates with patients because you're really trying to identify the things that are most important to them and to try to make a plan to make that happen and that the Social Work team members were incredibly critical in helping guide that journey for this individual and with that I will open with our final speaker for this for our panel dr. Tara chat Myer as she is an assistant professor at the University of Louisville School of Medicine division of general internal medicine and palliative care and medical education she is the president of the Association of oncology Social Work vice president of the American clinical social work association and an affiliated faculty member at the Kent School of Social Work as a longtime oncology and palliative care social worker dr. Shep Myers research interests include psychosocial care of cancer survivors and their families gerontology health disparities caregiver issues palliative care survivorship and interprofessional education she is a co-investigator on numerous projects including a National Cancer Institute grant to develop a training program for health science educators to provide interprofessional education and oncology palliative care at institutions across the nation and an interdisciplinary gerontology curriculum for learners in medicine nursing Social Work dentistry and pharmacy dr. Shep Meyer has won several awards including the American Cancer Society its care award recognizing an allied health care professional for their compassionate affirming respectful and empathic service to the needs of cancer survivors and their families dr. Chet Mehra thank you for speaking with us this morning okay can I open this does it have slides on it or that was just yours okay okay hello everyone thank you so much for having me I'm gonna find my slide advancer here so it's really an honor to be here and among this great group of colleagues I have again learned something new every time I listen to these individuals and and hopefully you're gaining a sense of the mission of the importance of the integration of early palliative care if you're not as familiar with it for those of you who are MGH individuals for me it feels a little bit like I'm preaching to the choir because they they kind of under sold the importance of that study they're really probably isn't a palliative care practitioner in the world who hasn't cited that 2010 study about how palliative care not only improved quality of life and lower depression but increased life people live longer so that was an extremely influential and groundbreaking study so let's see while I figure out my buttons here I think I got it okay so I have some quick main points I'm giving an oncology Social Work perspective but the values of oncology social work are really shared among probably everyone here we all buy into and support psychosocial oncology so I'm using the oncology Social Work example but really is applicable across professions and so I'm going to describe that a little bit and then go into why oncology social work and everyone else really should advocate for early integration of palliative care with those affected by cancer and serious mental illness and then go into a little bit about how to do it or at least how to start it so what is oncology social work according to the association of oncology social work it's the practice that provides psychosocial services to cancer patients their families and caregivers as part of the oncology healthcare team we conduct research and connect patients and families with essential communities national and international resources as well as end-of-life care and so what you see here is a list of the functions of the clinical practice of Social Work popping up from psychosocial assessments to determine survivor and family strengths and needs relative to coping effectively with cancer diagnosis treatment and follow-up interdisciplinary care planning with survivor and family input based on mutual goals we do a range of therapeutic and other intervention including supportive counseling group work and education to address issues in each phase of illness we do pre-admission transfer and discharge planning case management services as well as direct assistance to meet financial transportation lodging and other needs and proactive provision of services to at-risk populations including assistance with negotiating barriers to cancer information screening treatment and resources within the institution and the community you see collaboration advocacy the removal of barriers and addressing gaps and finally research we do participate in research and we are developing our own research knowledge base as well looking at the impact of cancer refining interventions as well as of aid evaluating practice outcomes so going to a wider stance from oncology tools of Social Work to Social Work values in general this kind of explains why social workers are so weird in a lot of ways although obviously you see things that are shared among multiple professional core values you see service and competence and integrity we place a huge importance on the value of human relationships and the dignity and the worth of the person and of course social justice and I just want to read that one ethical principle that we have for you social workers pursue social social change particularly with and on behalf of vulnerable and oppressed individuals and groups of people social workers social change efforts are focused primarily on issues of poverty unemployment discrimination and other forms of social injustice these activities seek to promote sensitivity to and knowledge about oppression and cultural and ethnic diversity social workers strive to ensure access to needed information services and resources equality of opportunity and meaningful participation and decision-making for all that one's particularly relevant to the topic that we have today and that's why I wanted to share that with you and of course when you think of social workers think about pie why because we focus on the person in the environment that's like Social Work 101 that when you first go to school you learn about the person in an environment and because of that we focus a lot of our assessments and our interventions on the social determinants of health again super relevant to this population in particular but we know the studies that that are out there and there are many say that social determinants of health affect impact health outcomes anywhere from 50 to something like 70% of health comes are determined not by medical interventions psychosocial or psychological interventions but by social determinants and social interventions so these are super important for us so moving into why should we advocate then for early integration of palliative care we've kind of gone through the Social Work values and values that I believe are probably shared by many of the other professions as well the main reason is because palliative care is patient-centered care and patient centered Cancer Care is care that is respectable of and responsive to individual patient preferences needs and values and ensures that patient values guide all clinical decisions and it's not something that they say and then just don't do palliative care really really does it they set the example and a very high bar in making this happen they consider the patient as a whole person beyond their disease from the time of diagnosis through the balance of their lives and it's respectful of the patient's preferences needs and values related to the involvement of their family and friends in their care and it empowers the patient to participate in their care in a way that is consistent with their preferences needs and values and finally it requires that multiple levels of cancer care delivery are designed to accommodate the needs of patients and caregivers acknowledging the care delivery system must support providers to function effectively this one in particular multiple levels of care this is specifically about breaking down the barriers which this collaborative has tried to do beyond just doing care in institutions and moving out into the community and collaborating between the two and then supporting the providers to do that that's what this last one's about and why it's so important and that is self actualized patient-centered care if there ever was one so palliative care seeks to attain these lofty goals through the use of an interprofessional team and and and there's no one profession that can accomplish all the needs that our patients have and with palliative care they really are committed to the interprofessional team approach now there are many many many team members and like I said the importance of a team goes way beyond just individual clinical teams and moves into the community care as well but with palliative care the core primary professions that you most often see of course are the chaplains the physicians the social workers even psychologists registered nurses and nurse practitioners and then you see again patient caregivers family right there at the center and that's that's a common theme among all palliative care teams so we've kind of gone through the core value of palliative care and its value on patient-centered care and I highlighted some social work values and hopefully you've seen that there's really a lot of overlap between the two and why it's so easy for social workers in general not just oncology social workers but social workers in general to fully support and buy into this concept and Dame Cicely Saunders you know we like to argue she's kind of a walking interprofessional team she was the founder of Hospice of the hospice movement in England and we like to argue about what she was first I think she was a social worker first personally okay okay and then she became a nurse and then she went and got education to become a physician so that she could do Hospice but she integrated the values of all of those professions to create what was the first kind of version of palliative care that we had that was formal so that was just that that's why it makes so much sense particularly for Social Work but also I would ask you again to examine your own the health care professionals in the room if you haven't thought about those core values in a while go back and read them some of us have to do that every once in a while and just look to see where it aligns and look at the other main values and mission of palliative care in general and look to see where those things align and start to think of ways that you can integrate that into your own practice so because of that here's my statement social workers must absolutely must advocate for early integration of palliative care with cancer care and I was going to cite that study not actually realizing that it's it's already been study cited a couple times today and there are multiple other studies out there that support that those findings so it's very very important so how do social workers and everyone else in the room start to think about ways to integrate palliative care early well the social worker role in palliative care is doing some of the things that kind of already been been brought up here today planting the seeds about a time when a cure might no longer be attainable and the treatment focus may need to shift at cultivating prognostic awareness assessing or assisting patients and expressing their hopes and goals as she said dr. Jackson this is everyone's responsibility these are some things that we do but it's really really everyone's responsibility supporting patients and families through the transitions in physical and psychological psychosocial abilities navigating differing goals of care between patients and caregivers as we have heard highlighted in some of these patients stories today counseling patients about advanced directives and the huge and super important one for social workers in particular is bridging communication and education needs between the patient's families and all healthcare providers and teams again across barriers across institutions and settings and into communities and for Social Work oncology social workers and their work with those living with serious mental illness it's really about going back and applying those core social work values and standards which really do mandate the mission of this collaborative which is to the prevention of premature cancer more and the improvement of quality of life of individuals affected by mental illness and cancer going back to dignity and worth of the person and social justice and and and thinking of ways to apply those concepts with this particular group of patients who need us and it's even more about super extra comprehensive assessment we all do try to do comprehensive assessment but we have to do it more in depth and in different ways as you heard highlighted today already by Amy and some of the stuff that she did and it's not just assessing a patient but assessing caregivers community supports community clinicians and patients looking at the strengths and barriers with each and thinking outside of the box for solutions to those barriers and then really challenging the healthcare team and the system to do the same to think outside of the box to solve problems and this is what today is all about you know what this what this actually looks like in practice you heard already in these cases but also the rest of the sessions throughout the day are gonna be grappling with these things these issues and kind of what that looks like and then of course with community clinicians include palliative care look for us we're out there and if you imagine like what you saw today with the two cases you saw a wonderful medical and psychosocial skill applied to these cases and these patients had excellent care and they used a lot of the generalist approaches that palliative care supports in their approach to the care of the patients what might it have been like for these teams that were facing these challenges had they had that extra layer of support of either a hospital-based or a community-based palliative care team that could have been intervening as well and supporting the family it could have potentially been a little bit less stressful there could have been a little bit less suffering a little bit earlier on so I just challenge us all to continue to think about incorporating palliative care so now to get to it has everyone here heard of this the clinical practice guidelines in quality palliative care put out by the national consensus project if not this is something you want to check out you could go to the website there and download it for free you can read it online for free or you can actually purchase a copy it is it puts out a list of guidelines that they update quite regularly the fourth edition just came out and they aim at approving care and the safety of patients and families it defines structures and processes of care and sex sets expectations for providers it guides clinical decision making and promotes standardization and it creates a foundation for accountability these guidelines provide essential elements for standards policies and best practices and it's not just it doesn't have to be just for palliative care teams like you can read through this document as a health care team an oncology team or otherwise and think about ways that you might incorporate some of its principles in your own practice some of the key concepts of course are patient patient and family-centered approach to care it's inclusive of all people living with serious illness regardless of setting diagnosis age or prognosis as dr. Jackson said and it's a responsibility and this document really promotes that it's the responsibility of all clinicians and disciplines caring for people living with serious illness so their premise is it's everyone's responsibility and to use that document and consume what's in there to apply into your own practice some of the domains that are included you can see here it starts with such structures and processes of care which really highlight the roles and the the structure of the team itself and the education requirements of the very of a palliative care team as well as whether what an interdisciplinary assessment might look like for the team then it goes into that what is the whole person all the aspects of care that make up the whole person from the physical the psychological and psychiatric the social the spiritual religious and existential and the cultural and of course ethical and legal aspects of care and it does touch on care of the patient nearing the end of life because it does need to be some specialized knowledge in that area so you can see you can look and see the whole person here and there's nothing nothing missing there and when you go through it this is a several page document that lists you know line by line specific recommendations for care in each of those areas I just pulled one for you as an example today I pulled the psychological and psychiatric aspects of care and this is the description interdisciplinary team addresses the psychological and psychiatric aspects of care in the context of serious illness they conduct a comprehensive developmentally and culturally sensitive mental status screenings social worker facilitates mental health assessment and treatment in all care settings and then communicates to the team communicate to the patient and the family the implications of psychological and psychiatric aspects of care so that's kind of like the description of what it is then here's just one guideline there are many within this domain of psychological and psychiatric aspects of care the interdisciplinary team includes professions who have received training in the potential psychological and psychiatric impact of illness including potential distressing behavior changes on both patients and families as they relate to psychological well-being the team has or has access to staff with training to recognize and treat common psychological issues including anxiety depression delirium hopelessness post-traumatic stress disorder and substance use disorder and withdrawal symptoms and more complex psychiatric issues suicidal ideation serious and persistent mental illness as well as personality disorders this is all within that one just that one guideline so this is a wonderful resource for everyone in this room even patients and families go and look okay this is the kind of care I want I'm gonna go and ask my doctors to help me get this type of care from now on because we know we talked about kind of how do we how do we get palliative care earlier with patients and families and we have a lot of data that also says the number one barrier to people getting palliative care is not the people it's not patients and Families it's providers and it's because of our use of language and the way we describe it as dr. Jackson has already highlighted there's a huge difference in well there's nothing else we can do for you it's time to call in Hospice how would you hear that versus you know it might be time because I'm really disappointed that we haven't been able to to cure your cancer with this the treatments that we've offered it might be time to talk about shifting the focus of your care from aggressive curative or life-prolonging to really aggressive symptom control and a aggressive support in a setting that that makes you the most comfortable and that kind of care is either palliative care or hospice and there's a huge difference and when patients and families hear it in that way they're able to receive it and they're able to do it because it doesn't communicate abandonment so because of that I'm kind of closing with there's one more thing after this but integration of palliative care with curative and life-prolonging care is a responsibility for all of us who are caring for these patients with serious cancer serious mental illness and for more information specifically around social work palliative care Social Work and oncology social work there's some great oxford handbooks that are out there for your social workers who want to I have more information this is a wonderful wonderful resource and any directors in the room make sure you buy at least one copy of both of these books for your cancer center or your palliative care team because they are just truly wonderful resources now the other thing that was mentioned in the intro oh and also the Oxford puts out palliative and oncology handbooks for nurses physicians as well so there's a great list of riyer a great great reading material for practitioners the other thing that I do at the University of Louisville is something called I cope then our interdisciplinary curriculum an oncology palliative education this was an NCI r-25 that was funded several years ago where we recreated a mandatory interprofessional oncology palliative curriculum for all learners in the School of Medicine nursing Social Work and chaplain residents in town and it was it is and remains to this day truly mandatory even though we have the funding is over because it was several years ago but today we have close to 3,000 learners who have gone through this I cope curriculum learned how to learn together around these concepts of palliative oncology who've now gone into the world and have gone into residency all over the world or all over the country in particular and have in an earlier time in their career bought into the interprofessional palliative care approach particularly with cancer care so there are some things online on the website that you can do you can go and do some of those online modules if you want to learn more about the integration of palliative care early in oncology care we have a few case based approach modules that are in there and then for there if there are any teams in the room who are wanting to get more information about how to create interprofessional palliative oncology learning experiences in your own clinical settings or for your learner's that was the other study that's currently ongoing that we're doing and I have information at the AO SW table out there about both I cope and I pecs the new one where we are recruiting right now faculty teams who want to create their own interprofessional Palli of oncology learning experiences so that's it thank you very much thank you dr. Chet Meyer that was such a helpful introduction to into thinking about social work and the interweaving with palliative care and cancer care and I love this idea but I think that's right that that idea of Pi really resonates with everyone here especially in patients with severe mental illness and this idea of person and environment and in the mission of Social Work which is really helping advocate for those who are vulnerable and and and you couldn't speak to I think a group that that that really is near and dear to our heart am I thinking the interest of time dr. Erwin that we're gonna do we have do we have time for I think what we'll do thankfully this is a day-long symposium we had really hoped to kind of open it up to questions but I think we we really had a lot of excitement and enthusiasm and a lot of great information that was presented to us but we will all be here throughout the day and so please feel free to approach any of us with some questions that you might have I'm in an interest of time I think we might be wrapping up and moving okay great a five minute break yeah we'll be around thank you so much and thank you to our panel [Applause]

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