Friday, September 5, 2014

Stand Up To Cancer Can Have a Palliative Care Focus - How You Can Help

If you have not been on any social media channels, watching TV, listening to the radio, or picking up a newspaper or magazine in the past week, you may have missed that tonight Friday September 5th is the Stand Up to Cancer (SU2C) concert/fundraiser. (Which channel is it on? Doesn't matter it will be simulcast on 31 channels.) What is this and why will I later be asking you to watch it and take notes? Well, keep reading if you want to make a difference in palliative care.

SU2C draws all sorts of celebrities to talk about their personal experiences with cancer whether it be with their family, friends or even themselves. When I first heard of this organization in the late 2000s (the oughts? the oughties? anyway...), I wasn't really sure of their mission, their likely longevity, and I was honestly a bit skeptical if their funds would actually go to cancer research or care. Maybe, I thought, this is just a feel good vehicle for stars to feel like they were making a difference. I admit I may have been a tad bit too cynical about the whole fundraising enterprise back then.

In the intervening years, I became more familiar with the background, work, responsibilities and excitement which comes along with development work. Working on the AAHPM's first major fundraising campaign, Shaping the Future, enforced the importance of motivating people to drive resources to a strong mission. Seeing the impact of the ALS Ice Bucket grassroots campaign was a fantastic learning experience for all of us in hospice and palliative care. I've done my homework on SU2C and frankly they are a pretty stand-up organization when it comes to administering donations. Rated 4 stars on Charity Navigator, they earn high marks for Accountability, Transparency and Financial Impact. They are backed by the Entertainment Industry Foundation, which is an umbrella organization for many causes.

With the help of the American Association for Cancer Research, SU2C has supported 750 researchers and 140 clinical trials organized into Dream Teams focused on translational research (bench to bedside) for rapid impacts in patient care. But when you look at the details of their research teams it is pretty clear the focus is on genetics, and biomedical therapies. The mission statements of SU2C and AACR never explicitly mention anything resembling palliative care or the more benign and accepted supportive care. But this year the theme is 'Survivorship,' and as any palliative advocate knows quality of life (QoL) is a big piece of survivorship. So seeing this big concert extravaganza has my brain thinking a bit more creatively about how HPM can learn from SU2C, and maybe how HPM can influence SU2C in the future.

So here is what we all need to do - watch and engage with the SU2C concert/media storm in the next 24-48 hours. In particular, listen to celebrities experiences with cancer. Sure, some of them will talk about 'ending cancer', 'fighting cancer' (don't get us started on battle language), 'curing cancer' and other lofty long term goals. Yet what we must listen for are the moments where we can say "THAT'S PALLIATIVE CARE!"

I'm talking about the discussions of quality of life while someone is receiving treatment, taking time to be with family, rediscovering spirituality, complicated grief, uncontrolled symptoms which went untreated, health care communication successes and failure. You will hear many situations which are truly about the impact of palliative care (whether it was available or not), and that, my friend, is where we come together and make a list of all the times when palliative care themes, philosophies or approaches were used or could have been used to help people Stand Up To Cancer.

Here is where the magic happens. Once we have a collection of true experiences shared publicly we can reach out to Stand Up To Cancer and start a dialogue about making next year's theme about palliative care. Yes, it is a long shot, but we could sit by or instead we could stand up ourselves to advocate for some of this great support to improve the quality of life of all people with cancer, whether they survive or not. And if that big piƱata of a goal doesn't work, we now know a group of celebrities who have shared very real experiences about palliative care and maybe we might be able to reach some of them to champion this great cause.

So will you stand up?

Pallimed | Blogger Template adapted from Mash2 by Bloggermint