“Being an unpaid caregiver is the epicenter of Life Sucks Disease,” says Alexandra Drane, Co-Founder & CEO of ARCHANGELS, “but it’s also one of the most glorious, one of the most magnificent jobs we’ll ever have.” So, what’s the trick to managing the “sucky” side of caregiving? Data.

Alex’s company ARCHANGELS has invented the Caregiver Intensity Index, which she describes as a “two-and-a-half minute Cosmo quiz” that helps caregivers quantify the intensity of their caregiving experience and identify the top two things driving that intensity and the top two things alleviating it. The score coming out of this helps caregivers validate the intensity of their experience, offers a framework for communicating about it, and, as Alex puts it, delivers “data that gives them permission to believe” that the stress they are feeling is real. ARCHANGELS then uses the info to crosswalk caregivers to existing resources that can help them manage those intensity-driving challenges – whether they be related to financial stress, workplace stress, relationship stress or otherwise.

Knowing that health plans and employers are starting to “see the light” when it comes to caregiving and its impact on their workforce, Alex and I talk about just how much payers are really willing to contribute to supporting the resources needed to support caregivers and how the data ARCHANGELS is providing is helping demonstrate need and connection to health and well-being. Lots of interesting data points on caregiving in this one – particularly when it comes to mental health and how things have changed through the pandemic. Watch now!

Joining Matthew Holt (@boltyboy) on #THCBGang on April 21 for an hour of topical and sometime combative conversation on what’s happening in health care are: patient safety expert and all around wit Michael Millenson (@MLMillenson); digital health guru Fard Johnmar (@fardj); delivery & platform expert Vince Kuraitis (@VinceKuraitis); and a special guest – Alexandra Drane (@adrane) the queen of caregivers everywhere.

You can see the video below live (and later archived) & if you’d rather listen than watch, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels.

Listen to Alex’s career trajectory as an entrepreneur; how she discovered and publicized the “Unmentionaables“; the good and the bad of her leaving Eliza, and the incredibly important work she is doing with Archangels. All packed into 45 mins!

This is be available as a video below and a podcast on Apple and Spotify from Friday.

Episode 6 of “The THCB Gang” was live-streamed on Thursday, April 23 at 1pm PT- 4pm ET! 4-6 semi-regular guests drawn from THCB authors and other assorted old friends of mine will shoot the sh*t about health care business, politics, practice, and tech. It’s available below and is preserved as a weekly podcast available on our iTunes & Spotify channels.

Our lineup included: Saurabh Jha (@roguerad), Ian Morrison (@seccurve), Kim Bellard (@kimbbellard), Grace Cordovano (@GraceCordovano),Vince Kuraitis (@VinceKuraitis), Brian Klepper (@bklepper1), and a special guest – Alexandra Drane (@adrane, founder of Eliza, Queen of the Unmentionables, CEO of ArchAngels and sometimes Walmart cashier). Lots of great conversation especially around palliative care, patient experience, the real prevalence of COVID-19 and much more.

And if you want to contact Alex about caregiving, here is her Youtube Channel or please email her. — Matthew Holt

We’ve all experienced the crushing agony of a heartbreak, or the deep foundational stress of worrying about how you’ll pay all your bills, or the isolating and bleak reality of a mum or dad or loved one whose health is failing in a way you can’t figure out how to stop – or fix. Life is hard. Now – how hard is all relative … but for most of us, our days are consumed on some level with a pretty significant level of worry. Did you overextend when you bought that house? Is so-and-so gunning for your job? Is it wrong that you secretly and deeply resent your partner because you’re sick of them “never doing anything”?

And how about the real worries – will you have food, electricity, heat, clothing, safety…the worries that consume more people than any of us would care to imagine (The Shriver Report has 1 out of 3 women living ‘on the brink’ – in other words, right smack dab in this reality). For fun – let’s try an exercise marriage counselors use for marriages that are in trouble…they have each of you sit down and write on a piece of paper what matters to you, and what you think matters to your partner. Then they compare the two. And what do you think stands out in stark testament to the current state of the relationship? Pretty much zero overlap. You don’t understand what matters to me, and I don’t understand what matters to you.

Let’s extend that analogy to the healthcare space…picture a typical day for many of us in the health communication space, for example. How are we spending our days? Dreaming up new and more imaginative ways to lecture about the importance of getting a colon cancer screening, or eating well, or taking your blood pressure medication, or getting in for your annual Medicare wellness visit, or or or…

And a question for those of us working on this stuff. If you turned all that passion and intensity you bring with you to work, and to the task of telling others how to live in a way that complies with HEDIS this or STAR that or [insert any other traditional health quality metric here]…if you turned that lens on yourself – how are you doing? Do you eat the way you should? How’s your weight? Do you sleep the recommended 7 to 8 hours of sleep a night? How are you on your preventive screenings – are you up to date? Did you exercise at all in the last week?

I’d bet the answer to all those questions is “no”. And I’d even go so far as to bet on some level, you (like me) are toiling away in your own private little hell. Most of us are pretty fundamentally lonely. Lost in a world of rapidly increasing communication mechanisms that with all their connecting are still, somehow, leaving us feeling incredibly alone. Alone in a world where it looks like everybody else is doing just fine (‘Check out how happy I am in this Facebook photo!!’) – and we’re the only ones kind of failing at everything.

Let’s compare those two lists – what matters to me as a human, and what matters to the healthcare system. What matters to me is my financial stress, my caregiver stress, my relationship stress, my job stress….and what matters to the healthcare system is checking the boxes on ‘quality’ metrics designed solely around a traditional definition of health.

My dad always told me if you want to start a business, pick a tidal wave that’s happening with or without you…because you’re going to make mistakes and when you do, that tidal wave will pick you up and carry you along with it. The extent to which our lives define our health is a tidal wave – and we can both acknowledge that, and start building products and tools and solutions and movements that meet each of us in the messy reality of our lives, or we can get washed out by that very same enormous and fast moving force.

The literature is clear – when life goes wrong, health goes wrong. Case in point – it’s now estimated that workplace stress alone is causing additional expenditures of between $125 to $190 billion a year – representing 5 to 8 percent of national spending on health care…and even more importantly – 120,000 deaths a year.

There are growing examples of individuals and organizations that get this stuff – and that are fielding solutions to help. Companies like Health Leads (meeting us on the lowest rung of Maslow’s Hierarchy and getting us access to heat, water, safety…), and Iora Health (meeting us squarely where we are and getting us support for our caregiver stress, our divorce, our substance issue…). I recently got to be part of the latest Robert Wood Johnson Foundation’s Pioneering Ideas Podcast (link below) and in the process learned how broadly this idea is spreading…Dr. Paul Tang of linkAges from Palo Alto Medical Foundation(a project RWJF supports) talks about stress, and its effects – especially on seniors – and what we can do about it. Harvard economist/MacArthur Genius Grant winner Sendhil Mullainathan shares ideas for transforming health and healthcare in a world where ‘attentional real estate’ – given the messy realities of life – is scarce.  We double dog dare you to listen here:  

As an industry with a mantra to heal, this is ground zero. We need to expand our definition of health to include life – and take this on not just as our obligation, but as our opportunity to address the fundamental drivers of health. And let’s not stop there. Let’s practice radical empathy with each other, and with ourselves. Let’s do it in the privacy of our homes, and let’s bring that raw authenticity with us to our work. Whatever you do to start acknowledging that health is life – start it now… maybe just by closing your eyes and inhaling a big fat breath of fresh air while reminding yourself, ‘I am not alone in this crazy world, because we all feel alone and on some level we are all crazy – but only in the very best of well-intentioned ways.’

 Alexandra Drane is the Founder and Chairman of the Board of Eliza Corporation and Queen of the UnMentionables (a series she started at Health 2.0 in October 2010)

Most of us find ourselves pretty fascinating… flipping through photos and slowing down for the ones where we’re included, tweeting our favorite tidbits of information, facebook-ing progress on this or that…

We find other people captivating as well. In fact, there’s a meme going around on facebook where people share a handful of things that most people don’t know about them – and there’s a great joy in learning these tidbits about the friends and family we think we know so well.

This Thanksgiving, we’re asking our friends and family to try this exercise, but with a twist – we want to know how they’d answer just five questions on their end-of-life preferences.

What? Are you CRAZY? Talk about how you’d want to die over Thanksgiving? Yup – that’s exactly what we’re suggesting. You know why? Because this is a conversation you absolutely want to have exactly when you DON’T need to have it… and it’s a conversation you need to have with your loved ones. Our hope for you this Thanksgiving is that you’ll have the luxury of checking both those boxes.

As humans, we’re all pretty fascinating, and exploring what matters to each of us under different circumstances can be a captivating conversation…and captivating conversations are part of what turkey dinners are all about. It’s also a vital one – there will be few times in our lives where ‘getting it right’ is more important than at the end of them.

There are also few greater gifts you can give to your loved ones, and they to you, than making sure these lives we are living with such ferocious intent have the luxury of ending the same way.

Engage with Grace is a way to help get the conversation about end of life started – a way to Engage in this topic with Grace. Just five simple questions about our end of life preferences that we can all commit to being able to answer – for ourselves, for our loved ones. Take a quick look – do you know how you would answer? Could you answer for your loved ones? There is no wrong answer – It’s only wrong if you don’t know your answers … or if you haven’t shared them.

Coming together over the dinner table to talk about the important stuff is part of our DNA…and it’s where so much of the good stuff happens. We connect, we share, we learn, we laugh, we fall in love, out of love, we fight and make up, we celebrate, we (maybe even) cry. If this Thanksgiving turns out not to be your thing, then pick another dinner. Check out the genius Death over Dinner movement started by our dear friend Michael Hebb to help make that happen. Thousands of dinners happening across the country – from cool hipsters to the very dearest grandparents coming together to think hard, eat well, and make sure we nail this end of life thing by making sure we’re talking about it. We double dog dare you to have a Death Dinner – and not enjoy it.

Know what else? What we want at the end of our lives often changes as we go through them… a mum of toddlers may find she’d opt for more intensive treatment options, while a great-grandfather may feel more comfortable choosing quality of life related treatment… so have this conversation once, then keep having it.

None of us are planning for anything less than living forever – so until one of us is smart enough to make that happen (go Google!) – let’s at least commit to this: we live our life with intent – we can end our life with that same honor. 70% of us want to die at home, only 30% of us do. Each of us will only die once – make sure you get to die the way you want. Then make sure that’s a gift you give to your loved ones as well.

Just five questions. Just get started.

Could there be a more important conversation to have this thanksgiving? Nope. Maybe that’s why they call it talkin’ turkey.

Warm holiday wishes from Alexandra Drane, Matthew Holt, Leigh Calabrese-Eck, and the rest of the Engage With Grace team.

Our family debates a lot of things over our dinner table – the best Looney Toon character, politics, whether or not (and where or when) something is appropriate…  For many of these topics, there are no right answers and no wrong answers – just a whole lot of discussion and opinions.

A few months ago, on the heels of the Health 2.0 conference, a small group of us gathered in a San Francisco kitchen for one of the most powerful experiences most of us had ever had around a dinner table.

The idea behind this inaugural “death dinner” was that it would be a forum to talk about death — how we’d want to go, how we want to be remembered, how we’d coped with the “good” or “bad” deaths among our friends and family. Through laughter and tears, from one thoughtful course to the next, we openly discussed death in ways many of us had never really thought about.  And that’s exactly the point. While it may seem uncomfortable–or even taboo–people are ready for this conversation.

Designed for both intimacy and accessibility, the Let’s Have Dinner and Talk about Death project takes the concept of the death dinner to the next level by not just leveraging the physical dinner table as its centerpiece, but by giving folks a chance to engage online.

Born from the collaborative minds of Michael Hebb (‘Hebb’) and Scott Macklin (inaugural Teaching Fellow and Associate Director, respectively, at the University of Washington Master of Communication in Digital Media program), and now a division of Engage With Grace, this project is the latest in Hebb’s and Macklin’s ongoing effort to “rethink the role the internet plays in embodied human experience.”  Pretty cool, yes?

This April 18th (coincidentally falling during the week of National Healthcare Decisions Day), Hebb will offer a sneak peek of the Death Dinner at TEDMED.

Conversations like this hold the power to reverse some distressing trends in our country today — trends that can feel even more distressing when they become reality for you and your family. 70 percent of Americans say they would prefer to die at home yet only 30 percent of Americans actually do. And let’s not forget that more than 25% of Medicare dollars are spent on the last year of patients’ lives – a year that can also wipe out a family’s savings on services it appears most of us wouldn’t even want.

The more we talk about end-of-life in casual settings, the more comfortable we’ll all get expressing our preferences… and the more prepared we’ll all be to understand and honor each others’ wishes when the time actually does come.  That evolution alone can start to make a dent on the bad stuff that happens when patients’ values aren’t heard and the system (that genuinely just doesn’t know any better) takes over.

Anyone who has joined us in the annual Engage With Grace Thanksgiving blog rally understands the power of the communal table to generate lively, thoughtful conversations.   And every year we hear from folks who are surprised to hear their loved ones’ end of life preferences…and those who surprise themselves by how much they’re able to open up on the topic.

Sometimes it’s just a matter of having the right conversation starter, like The One Slide, or a personal story that really resonates.  But most of all, people find that when it’s a conversation they don’t have to have, it can actually be a conversation they enjoy having.  And think of it this way – in a world increasingly fascinated with sharing every little detail of our respective lives – this could just be one of the last unexplored territories – imagine the intrigue!

In the spirit of continuing our mission to have everyone in this country understand, communicate, and have honored their end of life wishes, Engage With Grace is proud to support Let’s Have Dinner and Talk about Death. We raise our glass to Hebb and team for what they’ve accomplished already, and in anticipation of the impact we can all have together.

As we as individuals lose our squeamishness about having these conversations, the healthcare system – with its increasingly consumer-driven model – will follow.

And that’s good for everyone at the table.

Alexandra Drane is the Chief Visionary Officer of Eliza.

We talk to people every day about the barriers, fears, and motivations they have around their health, and often have the luxury of funneling the insights we learn back into the larger healthcare ecosystem. So here’s a doozy:  recent Eliza survey data (from October 2012) suggests that 82% of people say they would like their health plan more if they were more proactive about covered health care benefits … and two-thirds of people believe that their health plan is not telling them enough about what’s going on with healthcare reform and how it will impact their care in the coming years.

Based on this data, we wanted to dig a bit deeper into what exactly we can tell people to expect on that front. So we engaged Jeff Goldsmith and Charlie Baker in a conversation on everything from whether or not the Affordable Care Act is implementable (2:50) to the readiness of state and federal exchanges (5:00) to how employers will be stepping up to fill in critical health components (10:15) to the impact of increasing consolidation (15:00) to how the physician realm can keep a semblance of competitive tension in the provider networks (25:25).

And finally, we asked them the question we should all be asking ourselves:  will the care you are going to get in 2015 be better than the care you got in 2009? [40:41]

Click here to listen to the Podcast.

The good news is that many of these trends can be addressed through strategies like a stronger consumer-focused angle; higher-touch yet lower-cost communication between healthcare organizations and the people they serve; and a deeper understanding of how to proactively encourage health in both traditional (preventive health) and not-so-traditional (patient advocacy) ways. All eminently doable, right?

So listen, learn, and enjoy… and most importantly, stay ferociously committed to a healthier 2013 for all of us.

Alexandra Drane is the Chief Visionary Officer of Eliza.

Once again we’re hosting the annual Engage with Grace blogrally. Engage with Grace aims to get people talking about their wishes for end of life and advanced care. If you want to host this on your blog please do and feel free to get the html for this post here — Matthew Holt

One of our favorite things we ever heard Steve Jobs say is … “If you live each day as if it was your last, someday you’ll most certainly be right.” We love it for three reasons: 1) It reminds all of us that living with intention is one of the most important things we can do. 2) It reminds all of us that one day will be our last. 3) It’s a great example of how Steve Jobs just made most things (even things about death – even things he was quoting) sound better.

Most of us do pretty well with the living with intention part – but the dying thing? Not so much. And maybe that doesn’t bother us so much as individuals because heck, we’re not going to die anyway!! That’s one of those things that happens to other people …

Then one day it does – happen to someone else. But it’s someone that we love. And everything about our perspective on end of life changes.

If you haven’t personally had the experience of seeing or helping a loved one navigate the incredible complexities of terminal illness, then just ask someone who has. Chances are nearly 3 out of 4 of those stories will be bad ones – involving actions and decisions that were at odds with that person’s values. And the worst part about it? Most of this mess is unintentional – no one is deliberately trying to make anyone else suffer – it’s just that few of us are taking the time to figure out our own preferences for what we’d like when our time is near, making sure those preferences are known, and appointing someone to advocate on our behalf.

Goodness, you might be wondering, just what are we getting at and why are we keeping you from stretching out on the couch preparing your belly for onslaught?

Thanksgiving is a time for gathering, for communing, and for thinking hard together with friends and family about the things that matter. Here’s the crazy thing – in the wake of one of the most intense political seasons in recent history, one of the safest topics to debate around the table this year might just be that one last taboo: end of life planning. And you know what? It’s also one of the most important.

Here’s one debate nobody wants to have – deciding on behalf of a loved one how to handle tough decisions at the end of their life. And there is no greater gift you can give your loved ones than saving them from that agony. So let’s take that off the table right now, this weekend. Know what you want at the end of your life; know the preferences of your loved ones. Print out this one slide with just these five questions on it.

Have the conversation with your family. Now. Not a year from now, not when you or a loved one are diagnosed with something, not at the bedside of a mother or a father or a sibling or a life-long partner…but NOW. Have it this Thanksgiving when you are gathered together as a family, with your loved ones. Why? Because now is when it matters. This is the conversation to have when you don’t need to have it. And, believe it or not, when it’s a hypothetical conversation – you might even find it fascinating. We find sharing almost everything else about ourselves fascinating – why not this, too? And then, one day, when the real stuff happens? You’ll be ready.

Doing end of life better is important for all of us. And the good news is that for all the squeamishness we think people have around this issue, the tide is changing, and more and more people are realizing that as a country dedicated to living with great intention – we need to apply that same sense of purpose and honor to how we die.

One day, Rosa Parks refused to move her seat on a bus in Montgomery County, Alabama.  Others had before. Why was this day different? Because her story tapped into a million other stories that together sparked a revolution that changed the course of history.

Each of us has a story – it has a beginning, a middle, and an end. We work so hard to design a beautiful life – spend the time to design a beautiful end, too. Know the answers to just these five questions for yourself, and for your loved ones. Commit to advocating for each other. Then pass it on. Let’s start a revolution.

Engage with Grace.

Alexandra Drane is the Founder of Engage with Grace.