Hospice and Palliative Care 2.0 – CCCC

All of us do it. Literally 100% of us die.

That death doesn’t have to be full of pain and suffering, though. Marta Friedman, LCSW from UCSF remarked during one of the office hours sessions that, “Almost any moment can be a palliative moment.” It’s true.

My favorite session at the Coalition for Compassionate Care of California and Children’s Hospice & Palliative Care Coalition 9th Annual Summit was Defining, Evaluating & Articulating Social Work in Pediatric Palliative Care. The biggest realization I had during the session was that when children ask, “Am I dying?” it’s a social worker’s job to try and get to the real question of what the child is wondering about, and more often than not that’s really about a symptom, a parent’s behavior, or change of environment. I also really liked how this group of highly intelligent women talked about being “generalists,” and having to understand all disease continuums and processes across care. That’s quite the responsibility.

The panel that I spoke on with Rachael Goldring went extraordinarily well, and received nothing but positive feedback. I think that this largely had to do with the different energies we presented the audience with, as well as how opposite our stories and experiences with (or without) palliative care were. My final message for the audience in regards to talking to pediatric patients about palliative care was to ask early, ask often and ask gently. You can view the panel here by starting around 51 minutes into the stream.

Rachael’s perspective was that not telling a pediatric patient everything about their care is the worst thing you can do as a provider, but I countered her statement to remind audience members that there really is no one size fits all recommendation here, as some patients are information seekers, others information avoiders, and that the use of developmentally appropriate language during disclosure is critical. I also asked those in the audience to reflect on Dr. Zitter’s recent column about the necessity of Death Ed with Dr. Dawn Gross, and ask themselves why we have sex education, but not death education when both are relevant to everyone’s developmental lifespan.

Dr. Jessica Zitter’s talk reminded me that patients cannot die well if they don’t know they’re dying. They can’t access hospice or palliative care if they don’t know they qualify or even need it. Why doesn’t this get talked about? Well..what do we fear more than dying? Dying badly. In fact, in the information that she presented, 54% of patients said that being dependent on a breathing machine or ventilator would be worse than death.

My biggest takeaway from the conference was probably wrapped up in Dr. Zitter’s talk about medical interventions that are put into place, and while they might be seemingly well meaning, they don’t always produce outcomes that patients want, or even need, really. Sometimes interventions are trauma more than anything. How do we make sure that medical interventions aren’t just trauma? We share what we know as patients.

Disclosure: I receive financial support for travel, lodging, and registration fees for this conference, as well as a speaking honorarium. The views expressed in this post are my own.

Conversations that matter

This year I was fortunate enough to be asked to moderate a panel at Stanford Medicine X. The panel was called “Ah-Ha! moments in mental health and chronic disease management,” and I used the moment to shine a light on the similarities between patient communities regardless of age and diagnosis. The room for our panel was packed, and had standing room only. Each of the panelists – Mark Freeman, Danielle Edges, Ally Ferlito, and Sarah Kucharski – nailed their responses to questions and so clearly articulated the importance of mental health both in their own lives and in the lives of others within their patient communities.

standing-room

We saved time for a few questions at the end, and Christopher Snider pulled one from the live Twitter audience who was tuning in. We also had a physician remind the room how there is simply a lack of training related to patient mental health. His reminder didn’t present as an attack on the panel, but rather as words of empathy and a pleading apology to panelists after hearing how systems have failed and continue to fail some of them. As a follow up to his statement, I reminded everyone in the room how there were several Student Leadership Program attendees present for this session. Hopefully these students – future pharmacists, physicians, and researchers, took away a better understanding of the patient experience. Those attending the conference within the Student Leadership Program (SLP) blossomed, many receiving offers for funding their venture ideas, connecting with physicians for mentorship, and successfully networking amongst other guests. As an SLP Advisor, I felt like a proud parent! It was an honor to help coordinate the SLP program, and to improve upon accessibility efforts. It’s exciting to know that I was one of the youngest people there with very few undergraduate students, yet still tasked with the responsibility and respected for expertise, whether that be as a patient or student. And to think that two years ago I was apprehensive about applying to the program. This just shows that age, degrees, and professional qualifications cannot be substituted for life experience.

Just like last year, I met more people than I can count. But, out of everyone, Elizabeth Jameson stood out as the clear frontrunner as the person who I was supposed to meet. She was a part of the ePatient program as well, and I was immediately drawn to her. Liz was too. elizabethI think that we all had an instant connection. I found one of Elizabeth’s cards on the ground, and can swear that I have come across her artwork somewhere else before. While my admiration of her work certainly opened up the conversation, I believe that we were meant to meet for other reasons. You can see some of her pieces here. Elizabeth specializes in the intersection of art and science, and has secondary progressive Multiple Sclerosis. She and her artist assistant Catherine Monahon have created some incredible pieces over the years, all of which center around her own brain scans, similar to the ones that I have created in the past. I think that Elizabeth’s artwork speaks to the power of the patient voice, and also the reclaiming of one’s condition in a world so focused on fixing and medicating upon diagnosis. Her work is featured in permanent art collections at places like the National Institutes of Health, Stanford University, Yale University, and the Center for Brain Science at Harvard University, and I can only hope that one day we can collaborate on a piece of artwork together.

Friends and conversations had at 2015’s conference have translated into opportunities for 2016-2017, too. I’ll post that update later this month.

Disclosure: This post is one of several as a part of the Stanford Medicine X ePatient Scholar Program – Engagement Track, for which I receive financial support for travel, lodging, and registration fees for this conference. The views expressed in this post are my own.

Even More MedX Access

Whenever I would hear or think about the Stanford Medicine X conference over the past couple of years, I would imagine the MedX piano music playing, the announcer saying my name, and me walking on stage. It was my “dream big” goal. Well, it just happened in real life.

21098991513_f5a4530e7c_o (2)As I took the stage, everything that I had envisioned over the past several years fell into place. I got to address hundreds of healthcare’s most impactful individuals, and spread a message that three years ago I could have never imagined I would give, and said words that I never would have imagined saying publically. My friends, being the cheerleaders that they are, hosted a viewing party on campus.

A spectacular video of me filmed this summer played right before I took the stage, and I couldn’t be happier with how it turned out.

Taking the stage was one of those moments that I will never forget. The lights hit, and I just started talking. I had a message to share, and I did it. I used to be the kid in class who started crying in front of everyone whenever I had to give a presentation, regardless of the topic. I once cried through a presentation of a poem about bunnies. I had to take a summer speech class for school in order to try and get over my fear of public speaking. From the feedback shared on Twitter, the audience needed to hear what I had to say at MedX much more than that class needed to hear about a poem about bunnies.

Screen Shot 2015-10-12 at 8.41.48 PM

Talking to and meeting people that I had connected with via Twitter over the past several years at the conference itself was absolutely fantastic. I got to catch up with old friends like Alicia Staley from #BCSM Chats whom I had met a few years prior but hadn’t seen since, and meet and check out Dana Lewis‘ from #HCSM Chats artificial pancreas up close and personal. Connecting with Tom and Audun from Symplur face-to-face was great as well, because their efforts have been instrumental in the upkeep of #BTSM Chats, and all Tweetchats, really, over the past couple of years. Most importantly, Liz and I were able to reunite for some #BTSM bonding, which is something that we rarely get to do. The other ePatients in attendance were all incredible, and each story was more awe-inspiring than the next. Never have I ever heard caregivers advocate so hard on behalf of their children than at this conference, and never have I been around so many other people with chronic illnesses like me, but at the same time who are still so different. Each ePatient was so well versed in their conditions, and I’ve never seen that in an entire a group of people before. Every single one of us knew how to fiercely advocate for ourselves, and it was fascinating to watch take place. This rarity is another breed of patients. We’re paving the way for future patients to come. The healthcare providers, researchers, and technologists who I had the privilege of speaking with exceeded my expectations of their understanding of patient-centered care, Drs. Roni Zeiger and David Rosenman in particular.

When I returned to Arizona, I had finals to prepare for. Oh right, college. I’m not one of those international scientists who was presenting at the conference too, am I? Nope. I still have a few degrees to go if I want to get on their level. Processing what had just happened was something that was going to have to wait another week or two. I came back, took my exams, and did a Tiger Woods victory dance that I had not caught the MedX bug that everyone else seems to have gotten. Then again, I am an honorary doctor after participating in the doctor-patient simulation lab, so I could have prescribed myself some antibiotics if I needed them, right?

My undergrad friends were amazed at this opportunity that I was afforded. They wanted to know how they could get involved. How might we make MedX more accessible to undergraduate college students? How might we turn a private event, something that requires funds outside of a college-student’s budget, into something that students could gain access to, in-person? What would that look like? Would it be through more pop-up events? Would it be through student-curated events on campus?

These students are highly motivated pre-med and pre-health students who, in their own words, say that attending MedX would be “the dream.” MedX was once “the dream” for me, but then it became my reality. I gained access as a patient. Sometimes having a brain tumor comes in handy, I suppose. These other students want access too, but they don’t have brain tumors, and they can’t apply to the ePatient program. Emily Kramer-Golinkoff said during a panel that many patients are literally dying while they wait for research to improve, her included. This is the reality. These students would do almost anything to be at this conference. They are energized and motivated to be a part of this conference that will hopefully be a catalyst to keep Emily alive. They want to be a part of this shift in medicine. They want to learn from patients, and they want access to this conference. They want a seat at the table. Watching online isn’t enough for these students anymore. They want to talk to the patients, and they want to talk to the rest of the speakers. Twitter can start conversations, but they say that it isn’t enough. They want to debate the ethics of research protocols, and they want to challenge how doctor-patient interactions are taking place. They want to bring up issues that they see aren’t being addressed by physicians they are interning and volunteering with, and their ideas are just as valuable as mine. Undergraduate students want to be involved, and they don’t want to have to wait until they can afford to attend the conference as future physicians. They don’t want to wait, because Cystic Fibrosis won’t wait, and because no other illness will wait, either. Some students might be under the legal drinking age, but they aren’t too young to know that they want to change healthcare. They might even be the ones to do it.

Disclosure: As a part of the Stanford Medicine X ePatient Scholar Program, I received financial support for travel, lodging, and registration fees for this conference. The views expressed in this post are my own.

Students Supporting Brain Tumor Research

I spoke at an event for Students Supporting Brain Tumor Research on Monday night here on campus. It impresses me that the group is entirely run by high school and college students. Although the turnout was quite small, I was still able to communicate what I think the needs of the brain tumor community are to college students without that medical experience.

As it turned out, there was a fellow brain tumor survivor in the audience! He is a freshman here as well, and we even live in the same building. From what I remember about the brief conversation that we had, his tumor was in his right temporal lobe, and he is also interested in patient and research based advocacy. I am looking forward to hearing more about his story when we have lunch together next week.

Image