Engage with Grace

This is the full text of Alexandra Drane's talk about Engage with Grace at TEDMED. I'm so proud of Alex for what she's done and her talk was outstanding–Matthew Holt

So when I heard that I was going to be speaking with all of you about end of life, I was a little sad at first…even though end of life is an obsession of mine….because TedMed is such a sexy event, and speaking here is such an honor. I wanted to talk with you about something like vitality – feeling alive, being empowered, taking life into your own hands…but then it hit me… that’s what end of life actually is – that’s what it can be when it’s done well.

But … It’s not usually.  70% of people want to die at home, only 30% do.

Here’s another stat you might not have thought about recently – You only die once.  Think about that for one second – You only die once. Not my words – Atul Gawande’s in his incredible essay on end of life – ‘Letting Go’–  which I am now declaring as mandatory reading for each and every person attending TedMed.

End of life in the US has somehow failed to become personal. It’s like this thing we put on a shelf and ignore.  And getting what you want at end of life has become synonymous with filling out forms and getting waivers and going to some lawyers office where you pay a lot of money and get excited when you get to keep the pen.

But that’s not what it’s about. Not at all. Let me tell you a story.

Once upon a time there was this extraordinary woman named Za – short for Rosaria. Za was first generation Italian, breathtaking to look at, driven to become a pharmacist – the first in her family to go to college – and of course she was also human…She loved to enjoy…spending money she didn’t always have, generous to a fault. She was madly in love with her husband John and her two year old daughter Alessia, the apple of her eye. Deep within Za welled this enormous sense of joy – a deep gratitude for the life she had. As it turned out, deep within her also lived cancer – and not just any cancer – but the terrible and unforgiving brain cancer Glioblastoma – described by one of her surgeons as whip cream in a sponge – virtually impossible to eradicate. The seven month battle Za waged against her illness was a mighty one – she endured two massive brain surgeries, radiation, chemotherapy, all the related humiliations – but the cancer didn’t really care.

Can you imagine being 32, being in love, being a new mum, loving your job, looking forward to standing up for your brother as he got married on New Years Eve – and instead of putting on your favorite sexy dress and highest heels, being ambulanced from one hospital to another because they had found a mass in your head? Can you imagine waking in a hospital bed surrounded by the very family that had flown in for this wedding – many all the way from Sicily – and hearing from them that you had a tumor in your brain? Can you imagine – after six exhausting weeks of radiation –sitting on this cot covered with a crinkly piece of paper, freezing in your johny, hoping your two year old wasn’t wreaking too much havoc in the waiting room where she waited with your mum – can you imagine hearing that the radiation hadn’t worked? That the cancer had actually grown?  Can you imagine knowing you were dying?  At 32?  
I don’t know for sure that she did know that she was dying.  Even though we were there with her almost every night over those seven months, I don’t know because we never talked about it.  Death just wasn’t something you talked about in the family. And all those doctors that took care of her? In this hospital that was number one for this very type of cancer? They never talked to her about it either.

They did ask us what we wanted to do when the end was near, however.  We didn’t know for sure, we hadn’t discussed it with her. Our gut was she would want to go home –  So that’s what we told them.  ‘We want to take her home.’  

They said, ‘You can’t.  Her case is too complicated. She needs to stay here in the hospital.’ Now I work in the healthcare space, and I am not a shy and retiring wallflower – But when the head oncologist looked down on us and said, ‘You can’t’ – I froze. Just caved.  And Antonio – her brother, my man, who had spent most of those seven months embarrassed by how frequently I questioned her care team  - he stood up, thank god, and said, ‘No.  We are taking her home.  We are absolutely unquestionably 100% taking her home.’  

And so we did. And that night – after two months in the hospital, two months of her daughter feeling afraid to lie next to, or talk to, or even touch this mum she had stopped being able to recognize – on the very first night we had Za settled at home –– and safely surrounded by the comforts, the familiarities, the smells of those sacred four walls –  Alessia crawled up next to her in the bed, and for the first time in eight weeks, gave her mum her medicine. For the first time since Za’s 2nd surgery, she tucked her head into the crook of her mum’s neck. And Za – who had not spoken or opened her eyes in at least a week, woke up fully, and looked her daughter square in the eyes, and loved her in the way that only a mum can. And the next night she died, peacefully, at home.

I wonder sometimes, who got the greatest gift that night? Was it Za?  Who may finally have felt some peace, at home, finally able to connect with her daughter? Or was it really Alessia – who is now 7, and who to this day crawls into my lap to hear stories of her mum, and how she was the very last thing her mum saw – how her mums face had softened in unbelievable peace on that last night? Or was it really the rest of us – honored to witness that incredible moment – knowing we almost missed it?

Reinventing the way we deal with end of life is a gift for everyone – for each and every person alive today.  And it’s something we have to do. Unquestionably, 100%, we have to do this better.

So we came up with this idea…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 could all commit to being able to answer – for ourselves, for our loved ones.

Theoneslide The thought was this – if we could answer the questions for ourselves, if we could answer just these five questions for our loved ones, then we could focus on making sure the intent they represented was  honored – No matter what. Take a quick look – do you know how you would answer? Could you answer for your loved ones?  Let's take number two – If you were in this state – would you want to be at home, or in the hospital? There is no wrong answer. It’s only wrong if no one knows your answer, and no one is willing to advocate for you. 

Since we launched over two years ago, we’ve seen that once this conversation does get started, once we share these thoughts with each other, the lawyers, the affidavits, the system that intervenes to bowl over our intent– it stops being intimidating – we become empowered. You only die once – die the way you want. Make sure your loved ones get that same gift.  

Our time together has mostly been about furthering health and wellness. I would argue that that’s what better managing end of life is all about – vitality. Za didn’t plan to get brain cancer – and none of us are planning for anything less than living forever – so until one of us here is smart enough to make that happen – let’s at least commit to this: we live our life with intent – we can end our life with that same honor. And we can make sure our loved ones have that luxury as well.  

But if we wanted, we could do more than that. Since Engage with Grace went viral – it has made a difference, but it’s not enough. Make no mistake about it – The power in this very room right now could single handedly change the way we as a nation deal with end of life. You could get this conversation started in a real way – in a game changing way. You are an amazing group of individuals – and most of you do a lot of talking, a lot of influencing… what if you added this one slide to the end of your talks?  What if you became an ambassador for getting this conversation going? This room's currency is the social networks we all have –  if everyone here shared this with their own circle of influence, by January we could probably have touched the entire US. Commit to being able to answer the five questions for yourself, for your loved ones. Commit to advocating for each other. Then commit to spreading the word – take this on as a mission.  Just one slide – just five questions – just two minutes to spread the word. Think of the enormous difference we could make together. Help us Engage with Grace.

Categories: Uncategorized

Tagged as:

4 replies »

  1. I was also in the audience and her talk was quite moving. For those who want to take a more formal step, there is the Five Wishes Living Will, which meets the legal requirements for an advance directive in 42 states.
    Five Wishes lets your family and doctors know:
    •Who you want to make health care decisions for you when you can’t make them.
    •The kind of medical treatment you want or don’t want.
    •How comfortable you want to be.
    •How you want people to treat you.
    •What you want your loved ones to know.
    Here’s a link: http://www.agingwithdignity.org/index.php.
    Full disclosure, Five Wishes was developed under an RWJF grant.

  2. Thank you Alex. I will definitely use this in my practice. Much easier for patients and family to process than the POLST form.

  3. I was there, and Alex did us all proud. She conveyed the story with such feeling – reading it brings tears to my eyes again.
    I recently learned that my own father wanted to die at home, but his long-term care facility, which we trusted so well, gave us half-truths about hospice. When Mom asked if it was time for hospice, they told us we’d only get one hour of care a day. That was only true of we stayed in the facility: if we’d brought him home as they knew he wanted, their income would have stopped, but a whole other world of hospice care would have opened up to him.
    I don’t know if it was ineptitude on their part, or a simple misunderstanding, or what. I do know he (and we) would have benefitted if we’d been more proactive (and yes, less trusting) about the whole situation, as Alex urges we do.

  4. Brought tears to my eyes. There is too much profit in the dying process for there to be change. Review the Medicare expenditures during the last week of life. As doctors are paid less and spend less time with patient and family, the dying process will continue to be grist for the cash register, whether it be fee for service, DRG, or MEDICAL HOME.