When an online community member dies
February 7, 2012
What should a community manager do when a member dies? In short, acknowledge the loss and celebrate the life.
Most people have little experience with death, loss and grief. The community manager can help by giving people a place to talk about their feelings and pay tribute. You should lead by example. Don’t be prescriptive, but offer guidance to people who may be facing the reality of death for the first time.
- Start an “In memory of” thread or blog. Write about the member’s contribution to the community. Include a photo if available and a personalized message about how he or she will be missed, for example, “we’ll all miss Jim’s witty humour and love for cooking metaphors.”
- Announce the death in at least one communication – a blog post, newsletter, a forum thread. Be careful about its placement in a newsletter in relationship to the other headlines. Be respectful, but don’t completely change the normal, expected tone of the newsletter.
Here are some optional ideas:
- Contact a family member or friend privately (if possible) and ask if community members can send donations to a specific charity. Post this information to the community.
- Post funeral or memorial details if appropriate.
- Offer links to grief counselling services and online resources, such as Canadian Virtual Hospice.
What inspired community tributes have you seen?
Colleen Young 
This is obviously a really tough question and it will be guided in large part by the type of community and the culture of the community. If it’s a community of people with Stage 4 cancer, there is probably an established practice by virtue of the fact that it unfortunately happens often. If it’s a business community where heath is not a topic of conversation, it would be handled very different, perhaps by even sending a direct email to those who were connected to the individual instead of a public community announcement. Regardless, it’s worth asking the community what they feel is appropriate and respecting the general tenor of the person who has passed – if they were incredibly private for example, you may choose to handle the situation differently.
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This is an issue we deal with regularly at patientslikeme.com. We consider information about a member’s death to be part of their data legacy on our site. Once we confirm the death with family or obituary, we note the date on the member’s account and add a black bar to their profile to indicate visually that they’ve died.
We encourage family members to inform the community if they like, or we are available to do that for them. There are always In Memory posts where the community members are welcome to come and pay their respects. Many of our members live with progressive conditions and are very aware of their own timelines, so this is definitely something our communities are thinking about and talking about.
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Excellent post Colleen. The timing on this is surreal.
Recently, a prominent Canadian volunteer support person died. He was known internationally as a patient contact. It was difficult for us to deal with because it impacted us as individuals as well.
We felt it important to acknowledge his contributions to patients worldwide and also wanted to alert them so they didn’t hear about it 6 months later or worse. We have great respect for him as well as friendships with him. We were also concerned about patients calling his phone number seeking his support, at a time when his family was grieving, or in future and his family having to repeatedly tell people he died.
We sent an email blast through our support forum to all registrants to notify them, share our remembrance of him, and linked to his online obituary in his local news plus a memorial page through the funeral home. We included an apology for having to deliver the news to them this way. Email is possibly the worst way to get news like this so we were concerned about that but there was no other way really.
On our support forum, we created a memorial discussion for him with the same information and links. Finally, we emailed our affiliated international patient groups as he had formed many friendships over many years internationally. They also announced his death in a similar way to their members.
We have not contacted his family directly yet as we understand this time is hard, but we will be doing that as well. Many of us were friends with him and we want to offer our support to his family if they need someone to talk with now or in future. We’re tracking grief support resources and agencies across Canada as a result, so that we can direct people to someone near them for grief support, when a loved one dies. Sometimes the last thing survivors want to deal with is an organization focused on the very illness which took their loved ones’ life. It’s best to have professional grief supports to share with them.
One of the greatest concerns we had was the impact this would have on fellow patients. He was young and it was unexpected and sudden death. It has really shaken up many fellow patients to the reality of our illness and that we can’t ignore we are at risk of death at any time. It’s important to be sensitive to them as well to help them not react in fear or live in fear of them experiencing the same thing. We are trying to empower our members to live life as fully as possible, to not dwell on risk of death at any time, but be proactive in taking care of health and managing their illness so they can enjoy their good days as much as possible.
Thank you for this post. It is very important topic and all organizations and support groups will need to address this issue at some point unfortunately. It’s great to have your work as a resource for guidance and education.
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Rachel, Jeanette and Carrie,
Many thanks for adding your wisdom and experiences to this post. Collective knowledge is so much richer than a single opinion.
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Colleen,
Thanks for this timely and thoughtful post. I think that your point about acknowledging the loss and holding a space for memories and sharing is hugely important. In our #EOLchat Tweet chat, we had one session specifically focused on the loss of a support group member, both on and offline. The Storify of that chat can be found here: http://storify.com/drbeckerschutte/eolchat-12-22-11-death-in-a-support-group.
Warmly,
Ann
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I was disappointed to miss that particular #EOLchat. The Storify of the chat helped inform this post. Thank you for sharing it here Ann.
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I am only catching up on this post today but what a timely one for the #BCSM community who lost two integral members the same week you wrote this. We reached out to each other online from all corners of the world to remember, to grieve, to support each other – to light a virtual candle for our beloved friends, Rachel Moro Cheetham and Susan Niebur. It was one of the most beautiful, moving things I have witnessed online and a wonderful example of how we can support and hold each other in an online space.
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So true Marie. The timing of the post was purely coincidental, but providential in that the #BCSM put the recommendations into practice naturally and perfectly.
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Thanks Colleen, for an awesome post and the many discussions we have had about #EOL and #HPM issues on your blog and in tweetchats. Your example and these discussions helped me and the #BCSM team put the tribute in action when Rachel Cheetham Moro and Susan Niebur died February 6. Within an hour of hearing of their deaths, I’d been in touch with our previously scheduled guest and from that point forward, February 6 was a day like no other for the #bcsm community.
These two women I’d met in the virtual world – then in real life – slipped from the edge of our fingers. They are gone. I am still stunned. They were young, intelligent, vital and a source of courage and inspiration to all that met them. I have not been the same since they died, and the #BCSM community has not been the same: yet how could we be? Loss is not absorbed equally among us. Grief has its own way.
The simple on-line tribute that evening was only a beginning. The ultimate test, the truth of our friendship and respect for their legacy, will be in forging initiatives and real progress from the hopes and dreams they shared. That to me, is the strength of an online community: where do we go from here?
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So true Jody. Thank you for sharing. We will explore more about where we go from here.
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