It’s Always Too Soon Until It’s Too Late
By Leah Carey
June 21, 2016
It takes courage to talk about end-of-life issues before they are imminent. Unfortunately, when end of life becomes imminent, it is often too late to discuss these issues with a clear head.
That is why Ellen Goodman created The Conversation Project.
Goodman is best known as a Pulitzer Prize-winning columnist for the Boston Globe. Since her 2010 retirement from that paper, she has shifted her focus to end-of-life concerns.
Her interest in the subject began with her mother’s death. “My mom was one of those people who could talk about your problems until you were bored with them. We talked about everything except one thing: how she wanted to live at the end of her life,” she recounts on The Conversation Project website. “In my mom’s last years of life … I was faced with cascading decisions for which I was wholly unprepared. After all the years I had written about these issues, I was still blindsided by the inevitable.”
Today, Goodman spends her time encouraging others to have the conversations that she neglected to have with her mother: What is important to you about life? What do you want for your death?
“Everybody has a story. It’s amazing,” Goodman said in a recent phone interview. “There’s a three-second pause and out pours a story. There are stories of good deaths and hard deaths. I’ve heard them all.”
“I’ve heard people talk about how they deeply wished they’d had a conversation with a loved one, but when that loved one started talking about it they said, Oh don’t be silly, you’re not going to die. And then they really regretted that they hadn’t listened,” Goodman continued. “And then there are people who did have those conversations and they felt much more comfortable that they were doing what their loved one wanted. Their mourning was there, but their sense of guilt or their questioning of whether they did the right thing was alleviated hugely.”
Having “the conversation” is a gift you give your family, she said. “The last legacy that you want to leave is your adult children yelling at each other or estranged from each other because they have different ideas of what should happen.”
The starter kit
The Conversation Project offers a starter kit to help everyone have the conversation with their loved ones. It focuses not just on the specifics of what types of treatment you would want during end-of-life care, but also what your philosophy of health care is.
The guide starts with “Where I Stand” questions that allow you to rank your feelings on issues like:
As a patient, I’d like to know… Only the basics about my condition and treatment to All the details about my condition and treatment
As doctors treat me, I would like… My doctors to do what they think is best to To have a say in every decision
What are your concerns about treatment? I’m worried that I won’t get enough care to I’m worried that I’ll get overly aggressive care
“The starter kit isn’t scary, it isn’t medical,” said Goodman. “One of the things we suggest people start with asking is what their experiences were, telling the story.”
They recently released a new kit that is geared toward people with Alzheimer’s and dementia. “It’s always too soon until it’s too late,” said Goodman. “If there’s any place that’s true, it’s about cognitive decline.”
They have also created a guide for parents to have “the conversation” with a critically-ill child.
Normalizing the conversation
Goodman said that she and her compatriots have been talking with Hollywood screenwriters in the hopes of bringing end-of-life conversations into the regular conversations portrayed in movies and television.
“We’ve had some examples of quite wonderful pieces were done … like Lena Dunham did one episode of Girls in which she had a conversation with her grandmother,” Goodman said. “On the other hand, I think it was Grey’s Anatomy in which the doctors overrode the decisions of the family.”
She’s also concerned about storylines that show someone receiving resuscitation and walking out of the hospital the same day. “That is the opposite of reality,” she said.
“Our goal is to normalize these conversations – to change the cultural norm from not having the conversation to having them,” she continued. “Having them incorportated into shows without them being the focus of the show is something we’d like to see.”
Goodman said that the biggest goal of The Conversation Project is for people to have “the conversation” before a crisis. “Crisis is a terrible time to learn.”
There are two days a year that Shawn LaFrance thinks are ideal for talking about advanced directives: Thanksgiving and April 16.
“At Thanksgiving families come together, sometimes multi-generations,” he said. “Isn’t that a great time to have those conversations? We say, No pie until you talk about how you want to die.”
The other, April 16, is in recognition of the old trope that there are only two certain things: death and taxes. “You do your taxes on April 15 and think about advanced directives on April 16,” said LaFrance.
LaFrance is the executive director at the Foundation for Health Communities, which has created New Hampshire’s Advanced Care Planning Guide, a DIY guide to creating your Living Will and Power of Attorney for Health Care.
LaFrance explained that while the Living Will is good in terms of detailing your wishes, it can’t cover every eventuality. For that reason, “it’s far more important to select your Durable Power of Attorney for Health Care.” This is the person who you empower to make all health care decisions on your behalf, in the event that you are unable to make them yourself.
LaFrance said that until recently, many people were only doing advanced directives as part of estate planning with a lawyer. “That’s fine, but it gets wrapped up in these other legal documents and oftentimes put in a safe deposit box where it’s not accessible.”
Once advanced directives are filled out, hopefully as part of a larger conversation with family members, the finished forms should be distributed to family and medical providers.
Attorney Bob Brazil of St. Johnsbury looks at a lot of advanced directive documents with his clients, but he doesn’t fill many of them out himself.
“I’m finding that these days most people are capable of filling these forms out on their own. They’re intended to be simple to use,” he said. “I assist people with putting their health care directives together, but that is basically talking about the decisions you have to make while completing this form, what your options are.”
Brazil explained that Vermont has a short form and a long form, and you can decide which you prefer to fill out.
The short form covers issues like what sort of pain care you want, whether you want assisted breathing, intubation, etc. “Decisions that are not covered by the health care directive, you’d be authorizing someone with the power of attorney to make those decisions for you.”
The long form is more detailed, including a statement of your values and goals, instructions for organ donation, disposition of your body after death and more.
Brazil said that it’s important to recognize that while advanced directives express your wishes, there are circumstances in which health care providers may not honor them – often because there is disagreement among family members of co-equal standing over how they should be carried out. “The hospital is not necessarily legally bound by your health care directive, but having a conversation with your primary care physician is a great way to strengthen it,” Brazil said. “Let people know what your wishes are so if there’s any potential for confusion or lack of clarity down the road, you’ve addressed that ahead of time.”
Brazil highly recommends that his clients register their advanced directives with the Living Will Registry.
My mother was an extremely practical person, so when she was diagnosed with cancer in 2014 she immediately wanted to make sure her advanced directives were up to date.
That’s when we stepped into a whirlpool of confusion.
We downloaded the advanced directive paperwork, never entirely sure that we had the most recent legal versions. We heard from friends that perhaps there were additional documents that we needed, but no one could identify what they were.
The advanced directive paperwork has numerous fill-in-the-blank areas. Mom was concerned that she hadn’t covered every potential outcome or predicted every possibility.
The downloadable do-it-yourself paperwork was designed for regular people to do without a lawyer, and yet we were never sure that what we had done was right. We struggled with the dilemma – should we trust our own reading of these documents, or should we spend money to have them redone by an attorney? And, not having an existing relationship with a lawyer, how would we choose with whom to work?
We, two intelligent, highly-educated women, were stymied by the whole issue.
Ultimately, thanks to the suggestion of friends, we chose Attorney Bob Brazil in St. Johnsbury because he is licensed in both Vermont and New Hampshire. He reviewed the documents and gave us feedback (he did, in fact, suggest that we redo them). I am grateful for the time and care he took to make sure we understood what was going on.
Once we finally started asking the right questions of the right person, it was relatively no muss-no fuss. But we had to wade through our own (admittedly irrational) fear of legalities and paperwork first, and that was no picnic.
For many people, the fear begins long before getting to the paperwork – they’d rather not consider end-of-life decisions or care at all.
I hope this issue of Living With Dying will be useful in helping you walk past whatever may be confusing or frightening about filling out your advanced directives. As everyone I spoke with reminded me, it’s never too early – it’s not just the elderly who have accidents or unexpected health events.