Can you and your loved ones answer 5 questions about the end of life? Alex Drane, founder of Engage With Grace, explains why Thanksgiving is a good time to talk about these issues:
If you have thoughts to share about Engage With Grace, end-of-life decisions, or related issues, please do so in the comments. Happy Thanksgiving!
I really think that a topic like end of life discussions should not be open during thanksgiving. I think we should talk about the best things or happiest moments during holidays. There are days you can set and talk to your family about “end of life”, don’t turn a happy holiday to a gloomy holiday.
I’ll tell you what gloomy is.
It’s when a family member has had a catastrophic health disaster, with no meaningful recovery possible, sedated and hooked up to and dependent on life support, with tubes and beeping machines everywhere, with most of the family believing that the sick person would want to be let go, based on their interpretations of how they’d live their life till then, but others thinking the opposite, and others opposed to terminating life support, in general, for other reason. And, then that family starts to fight, or the loudest most assertive person takes over, or no decision is made at all and the sick person just lingers and dies anyway, because there’s nothing objective to show the way to would the sick person would have wanted for them selves.
Those scenarios, which get played out over and over and over again, is what is really and truly gloomy and awkward and morbid and painful, and that will wound and strain family ties like few other things will.
Mrs. Life says
From experience, the holidays are always an awkward time. Seeing faces for the first time in years, being in close proximity by relatives that touch your nerve everytime. I don’t know if it can be done by most families. I think wakes and funerals are the best and most probable time to talk about long term planning, but that’s just me.
e-Patient Dave says
Hi folks, thanks so much for speaking up!
“No, not now” was my first reaction to this, too, when it first came up three years ago. My personal feeling is that we-all tend to cling to life, not wanting to talk about the end. Then, as Alex’s sister in law found, the end may arrive unexpectedly.
She talked about it at TEDMED – I briefly mentioned it in a post back then. She relates how that young mother barely got to have her final wish, and it was only because the family advocated strongly. And how glad the young daughter is, years later, about how it turned out.
It’s surely not something I’d bring up as people first gather and then sit down for dinner.
But as I thought about it, if family settles in and discussion moves on later, it may be for some families the only time they’re together that way. (Except, indeed, other deaths.)
When I was facing my own probable death in 2007 one thing I learned is that everyone deals with it differently.
Don’t do anything that’s not real for you. But perhaps with this conversation in the back of our minds over time, it will come up when the time is right.
For another friend’s perspective on this, see Brian Ahier’s post today Give Thanks with a Grateful Heart.
Thank you again for joining the conversation.
e-Patient Dave says
Here is the full text of Alex’s TEDMED talk.
Annie Stith, e-Patient says
Thanks for posting the text of the TEDMED presentation. It was incredibly moving. I was in tears — probably in part because, as I said elsewhere, my Mother died in the hospital when I know that’s not what she wanted.
The statistics got to me, too. It seems that if 70% of people want to die at home, that should then be an assumption by physicians and hospital staff. I wonder why it’s not part of the medical community’s culture?
e-Patient Dave says
> I wonder why it’s not part of
> the medical community’s culture?
I can’t speak for what’s in anyone’s mind but I’ve heard repeatedly, here and elsewhere, that treatments are COMMONLY administered at end of life against the patient’s express will. I can’t think of any explanation other than pure profiteering: jacking into the dying person’s carcass to extract money before the patient dies.
Here’s an example from two years ago: Overtreatment – sometimes against our will. And that was a case where the family included a high powered, well connected doctor.
I believe I’ve heard that Medicare will be cancelling funding for end of life care that wasn’t explicitly requested by the patient / family. Can someone confirm that?
My own father died at a nursing home, Heritage Harbor in Annapolis, against his express wish, because our family was given half-truths about hospice. He could have come home, but it would have cost the nursing home tens of thousands of dollars, and they led my mother to believe she’d get almost no support if hospice got involved. Their wording was artful and tricky.
I suspect this isn’t new: an ancestor of mine died in the 1890s in Denver, and his final papers show 5-6 doctor visits a day in his final weeks, all from doctors who hadn’t seen him earlier.
What to do about it? There’s no substitute for wising up, educating each other, and talking it out – BEFORE the time comes. Being engaged in our treatment decisions, before the time comes.
I introduced the topic to my daughter 2 years ago. It was a start. When she turned 21 we did wills, hc power of attorney, etc. Not fun, and it takes time, but you learn a lot listening to your loved ones. Being able to have this discussion – which is ongoing -builds trust
These discussions are vitally important and it is a great gift to give your family. My mother had an ongoing discussion with us during the last two years of her life, she had cancer. We were very grateful that her last days were not filled with uncertainy or conflict because we all knew her wishes. All of us (there are seven) have discussed our wishes with spouses, siblings, children, etc.
But not on a holiday!!! Some people dread going to family gatherings as it is. This year my family – as many families have – has been through the wringer with financial worries and other issues. We had a great day today and really needed one.
Annie Stith, e-Patient says
I know that, when my family used to get together for a holiday, it was one of the rare times we were all together. Because many had to travel, it was never a one day holiday, but more of a 3-5 day holiday.
I can certainly see talking about end-of-life issues on any of those other days we were all together. I know in my case I’d prefer to have a family talk then, than to have 6 separate conversations with each of my siblings.
When my mother passed, I knew she wanted her end to happen at home because of the way she spoke about her father going home instead of passing over in the hospital. Because she didn’t have a family conversation, we ended up fighting during a time we needed each other’s support, and my mother’s final wishes weren’t carried out.
That’s a terrible thing to carry, and some of my family won’t even speak to me still, 30 years later.
Susannah Fox says
Thanks so much for the comments.
What I appreciate about Engage With Grace is the gift of simplicity: the one-page summary that you can print out and use as a discussion guide or just think about on your own.
I also appreciate Alex sharing her own family’s story:
Instead of fumbling for words or a way to introduce the topic, you can say, “Hey, I heard an incredible story and got to thinking about these questions. Anyone want to talk about it?”
But every family is different. No one should feel compelled to have this conversation before they are ready or if they don’t think Thanksgiving is the right time. Engage With Grace just plants the seed – it’s up to each of us to cultivate it in our own way.
The start may be rocky — “Eewwww” by a teenaged cancer survivor already familiar with fears about her own death — but ultimately it creates trust.
Carol Torgan, Ph.D. says
Susannah – Thank you for raising awareness of this vitally important issue. As Alexandra Drane says in her TEDMED talk, you only die once.
Finding the ‘right’ time to talk about death with your family can be difficult. You can use a Hallmark movie, the birth of a grandchild, or even a sappy holiday card, as a starting point. The key is to Just Do It. As part of the Engage With Grace blog rally, I’ve shared my story as an example, and provided an additional list of questions individuals may wish to consider, http://bit.ly/h7yQ2P.
Preparing for your own death and sharing your plans with your family members is one of the most empowering things you can do as an individual, and may be the most powerful way you can show your family how much you love them.
Susannah Fox says
Thanks, Carol! Your essay is inspiring.
I’m very happy to say that, after checking in with siblings before I did it, I printed out the Engage With Grace slide and just left it on the kitchen counter yesterday. It sparked a conversation among generations that led us to the revelation that we all indeed have done the necessary paperwork (medical directives, power of attorney, etc). In just a few minutes we found out who is the designated and back-up decision maker for each person in the family AND the location of all the documents for each person.
Wow. And thanks.
I’ve known about Engage With Grace for three years, but it was only this year that I felt brave enough to actually do it. Much of that courage was inspired by seeing Alex Drane speak at TEDMED, but also the comments and essays I’ve read online this week.
Again, nobody should feel pressure to start this conversation if they are not ready, but I have to say it feels wonderful once it has happened. True thanksgiving for me.
Brian Ahier says
It is true that some families will not find the holidays the best time to have these difficult discussions. But please find some time to set aside for this important conversation. It may be that Thanksgiving is not the right moment to bring it up in the context of your family. I’m just glad that there has been so much attention drawn to the subject ~ the seeds of conversation have been planted…
Susan Birk says
Thanksgiving may be the best time to talk about end-of-life issues for some families–for others, not so much. But holidays or not, kudos to Engage with Grace for jostling people, including me, to have the discussion, which is all that really matters. My husband and I may think we know what my 89-year-old mother-in-law who’s moving in with us wants at the end of life, but we may be surprised if we ask her, so we really need to have the talk. I’m sure there’s more we could learn, and the 5 Questions is a great tool for organizing the discussion and getting answers to the crucial questions. I think my MIL would appreciate us asking. So thanks!
Pamela Ressler says
Thank you, Susannah for posting your original entry on Engage with Grace and to all subsequent commenters. I have been involved with Engage with Grace since its inception three years ago, having participated in the blog rally each of those years (pamressler.blogspot.com).
I agree that for many families it is difficult to bring up end of life during the holidays — but let’s be honest when is a good time? I know I would have been very resistant and reluctant to discuss any aspect of end-of-life 13 years ago…but in the span of the last 13 years my family has had to face this very difficult conversation 4 times, first with my 89 year old grandmother with Alzheimer’s, next with my 74 year old father diagnosed with a malignant brain tumor, then my 90 year old aunt with complications of diabetes and heart disease, and finally and most unthinkable, with my 14 year old son diagnosed with cancer of the bile ducts.
All of these conversations were very different, all with very different treatment goals…but all with a common goal of honoring the wishes of the individual. In my mind, this is what Engage with Grace does — it allows each of us to let our family members know what we value so those who are left to make the difficult decisions when/if we can no longer speak for ourselves can feel that they honored their loved ones values and wishes as best as possible.
This is truly a gift of peace and solace to those we leave behind. So whether it is during the Thanksgiving holiday or another time of the year, open up the conversation. Organ donation, another part of end of life discussions, has become a topic that is now widely talked about because of some celebrity endorsements of its importance. The NFL pre-game show (on Thanksgiving) spotlighted former NFL Bengal’s player Chris Henry’s mother who donated Chris’ organs to four individuals after Chris’ sudden death from an automobile accident.http://news.yahoo.com/s/ac/20101126/en_ac/7280230_four_families_thankful_for_organ_donations_from_late_nfl_player_chris_henry Perhaps we need these media openings..on holidays when we are gathered together, to realize that the conversation has been started for us, we just need to continue it.
Happy Thanksgiving everyone.
e-Patient Dave says
Over the weekend, a friend discovered (much to her surprise) that the family WAS able to discuss this. It was a setting where they were together for a few days, not just for Thanksgiving dinner.
We might be surprised what others are capable of.
I like Susannah’s idea of leaving the slide lying there where people can spot it in passing, and think about it for a while and speak about it when they want.
Alexandra Drane says
Wow. What enormous gratitude for each of you as individuals and all of us collectively trying to figure this stuff out.
As a serial entrepreneur, one of my favorite reminders is: ‘If it was easy, someone would have done it already.’ This is not easy. It’s just UNBELIEVABLY important. ‘Problems worthy of attack prove their worth by fighting back’ (I mutter that under my breath every time I fail at something – so pretty much every day). This is a problem worthy of attack.
When we started Engage with Grace we did it not because we believed we had the answer, but because we believed we had to try. There are so many reasons this is difficult to do – as individuals, as family members, as organizations, as communities… that’s okay… we need to focus on why it’s so important to do it – and the arc of the above incredible discussion reminds us of that. This is a conversation you will have one day – including (but not limited to….) at the bedside of a beloved and dying family member (these are very hard times to uncover disconnects in expectations and knowledge), or in your head after the fact (sometimes for years and years) as you wrestle with whether you did the ‘right’ thing, or you can have it now – precisely and exactly and lovingly and generously and hopefully right when you do NOT have to have it.
Anyone who has gone through this knows there are two critical success factors to this conversation – first and most important that you have it at all, and second, that you have it when you don’t NEED to have it. If Thanksgiving feels like a terrible time to do it, pick an alternative. Or try Susannah’s approach to just leaving the slide around…that was exactly our hope!! There is an ease in starting ‘hard’ conversations when we have a tool…an aid…
Another benefit to the slide? If you’re all looking at the slide, you don’t need to be looking at each other….sometimes that’s a ‘safer’ way to get the conversation going. You can also check out deathoverdinner.org for some other great approaches to just getting this done – maybe even with joy.
However you do it, whenever you do it, wherever you do it – please just do it. Soon. Not only is there a very real chance it will not be the ‘downer’ you expect (but actually a loving and connecting and relieving and enormously satisfying exchange) – I can promise you it will be better than the alternative…trying to figure out after the fact or in the middle of the worst of it all just exactly what someone would want.
Doing death well is a gift – for all involved… a gift that will keep on giving. Sending enormous amounts of gratitude out to all of you – and love and love and love to Susannah and e-patient Dave – you two are beloved heroes.