End-of-Life Choice, Palliative Care and Counseling

A notebook from the Compassion & Choices 2012 Conferenceby admin


Thursday, June 28

12:45 PM

Lots of excitement here as people arrive. Two women coming out of the Grand Ballroom say, “We really want to see Dear Abby. But where is everybody? Isn’t it about to start?” You can see the urgency in their faces. They relax once they realize their watches are still on East Coast time.

2:00 PM

Columnist Abigail Van Buren talks about end-of-life decision making
Columnist Abigail Van Buren talks about end-of-life decision making

Big crowd, nearly 300. Buzz throughout the ballroom as the program begins. Compassion & Choices’ own Mickey MacIntyre welcomes people to the conference. And now he introduces Dear Abby; she looks just like her picture in the paper! Only more glamorous.

2:35 PM

Abby looks up from her prepared notes to ask any press in the audience not to report what she is about to say. For that reason it’s not possible to relate the story she’s telling, but the reaction is universal. You can hear a pin drop. This much can be told: She is speaking from the heart about her family experience with end-of-life choice.

It’s so compelling to hear personal stories. And from someone like Abby—who must always be conscious of her public persona—to hear her open up like this is very moving.

3:20 PM

Splitting up into breakout sessions now. People are consulting their programs, trying to decide where to go and comparing notes.

The lobby foyer is full for the host committee’s opening reception, and it feels like a real celebration. Michele Smith, a Chicago Alderman, welcomes the crowd to the city. An improvisational comedy group has everyone laughing with sketches on death and social work — not an easy task! A jazz trio is playing, everybody seems to love Chicago’s trademark foods, the wine is flowing, and people are really starting to warm up and connect.

Friday, June 29

8:00 AM

Over breakfast EOLC (End-of-Life Consultation program) volunteers, community advocates and medical professionals are connecting with each other for table-talk meetings.

8:30 AM

The early hour has not deterred people from gathering to hear family perspectives. Three people are on this panel, each speaking from a different perspective as someone who supported a family member who achieved a peaceful death.

9:30 AM

This family panel is more than affecting; it’s transforming. The three panelists have been through a profoundly deep place that inevitably changes you as a human being. There’s something about people who’ve faced difficult circumstances and then embraced their experience for a greater purpose. It’s free of sentiment. There’s drama, but it’s so plainspoken and from the heart, it really gets you.

10:10 AM

Alderman Michele Smith gives a rousing welcome
Alderman Michele Smith gives a rousing welcome

Here’s a testament to the power of that family panel. Last Wish, the book panelist Betty Rollin wrote about supporting her mother’s journey to a peaceful death, is for sale in the lobby. Ten minutes after the end of the session, the books are sold out!

10:15 AM

Person after person says similar things as they consult their programs and decide what breakout session to attend: There are too many good choices! If only I could be in two places at once!

12:00 PM

Gathering for the luncheon presentation on “reframing the conversation about palliative care.” In the hallways between sessions, lots of little groups of attendees are sitting together, sharing with each other and trading contact information.

1:30: PM

Fascinating dialogue between two leaders in the field of palliative care. Rebecca Kirch of the Center to Advance Palliative Care and the American Cancer Society talks about reframing the discussion about palliative care: It’s not about death, it’s about quality of life in one’s final days. Compassion & Choices Board Member and Chair of Medical Education at Mt. Sinai School of Medicine Dr. David Muller says palliative care specialists shouldn’t move the goalposts; to say it’s not about death is to indulge people’s death aversion. Expand the practice beyond the dying, but remember where you came from. The lobby is buzzing.

8:00 PM

It’s been quite a day! After an afternoon of sessions and workshops, a reception this evening features a performance from Tina Lear on the piano and then a remarkable presentation by Megan Cole. A blend of great theater and education, Megan explores how patient care can benefit from empathy. There are social workers and medical professionals still in their seats minutes after the conclusion as if pondering how to incorporate what they’ve heard into compassionate care.

Saturday, June 30

8:30 AM

This is not like most conferences, where the final day’s attendance is low. Everyone is still here. Despite nearly 300 people it seems intimate enough — has a family feeling. Attendees recognize each other in the hallway, recognize presenters, and come up to say hello. At breakfast groups of people from individual states are getting together to talk about what’s happening in their states and how people from the conference can get involved.

9:30 AM

EOLC Clinical Director Judy Epstein, second from right, listens to family perspectives panel. From left, Betty Rollin, Lois Hansen and EOLC Clinical Director Judy Epstein, second from right, listens to
family perspectives panel. From left, Betty Rollin, Lois Hansen and
Neil Rudolph.

Now this is an unexpected perspective. Steven Jenkinson — palliative care consultant and something of a gadfly to the movement — is offering a riveting talk that challenges not just the medical professionals but also the very organizers of this conference. He says our culture is “death phobic and grief illiterate;” death phobia always gets catered to when it shows up. “Patient-centered care” is one of Compassion & Choices’ guiding principles. Jenkinson says “No”: Death should be at the center. Otherwise, we’re in denial. Another great line: He calls palliative care “madness masquerading as professional competence.”

So many people are saying this conference made them really think; this is among the most thought-provoking

12:30 PM

Closing luncheon. Barbara Coombs Lee reviews the state of the movement and gives an inspiring challenge to seize the momentum and move forward. Sue Porter, EOLC volunteer and board member, accepts an award on behalf of Peter Goodwin, doctor who pioneered Oregon’s law and died this spring with medication under Oregon’s Death with Dignity Act.
Another long-time Oregon volunteer is accepting the Presidential Service award (as in President Obama) on behalf of all Compassion & Choices volunteers. She’s the same person who exclaimed today, “I learned so much. I had no idea how much there was to learn.”

Download the 2012 Conference Program here.