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David Casarett, M.D. Headshot

Grief Beyond Belief

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There are few experiences that are as lonely and isolating as facing the death of a loved one. That sense of loss makes the world around us seem different -- strange and foreign in ways that are difficult to see and impossible to explain to others. The very experience of loss rearranges how we think of ourselves and who we are, and yet the world around us continues as if nothing had happened.

We feel different. In fact, we are different. The loss of someone we love changes us irrevocably.

And it feels like the world should stop and acknowledge that loss. But of course it doesn't. People go to work and school, current events unfold, and email continues to pour in. It can feel like no one else notices, or cares.

That's bad enough, but what Rebecca Hensler discovered after the death of her son in 2009 was much worse. As Kimberly Winston reports in the USA Today, some of the support that Hensler received was worse than no support at all.

Friends and colleagues reassured her that her son was in a better place, for instance. They told her that her son's death was all part of God's plan. And they said they could see her son as an angel.

However well-meaning, those expressions of support did little to relieve Hensler's grief. In fact, they probably caused more harm than help, because Hensler doesn't believe in God. And she had little patience for talk of "God's plan" and angels. She just wanted her son back.
But Hensler found out that she wasn't alone. Last year she started a Facebook page Grief Beyond Belief that quickly struck a chord with non-believers around the world. That page has become a place where people struggling with loss can support each other in ways that don't offer what can be perceived all too easily as false reassurance.

How many people are there like Rebecca Hensler? I'm not sure, but surveys consistently indicate that there are at least 12,000,000 people in the U.S. alone who identify themselves as atheists. More significantly, perhaps, many of these surveys point out that even more -- as many as 30 million -- don't call themselves atheists but neither do they believe in God or a higher power.

For these people -- and I count myself among them -- how is talk of angels and heaven going to lessen the pain that they're feeling? As Hensler and her thousands of Facebook followers will point out, it won't. At best that language is irrelevant. It's just another brick in the isolating wall of grief.

At its worst, though, that talk of heaven and angels can be hurtful. Indeed, some of the most powerful posts tell the story of friends and colleagues and even family members whose goal is less supportive than evangelical. To say to someone, for instance, that their parent's death was attributable to their lack of faith seems impossible to defend.

As a hospice physician, these stories are enough to make me hesitant to raise the question of religion with my patients. Indeed, that territory seems treacherous, and full of hidden hazards. I always want to support my patients and their families in whatever beliefs they have, but I'm afraid to say the wrong thing.

Putting those anxieties aside, though, I do ask my patients about their religious beliefs. For me, though, it's not so much a discussion of religion per se, but a chance for them to put boundaries around their beliefs. It's a chance for them to tell me, if they feel comfortable doing so, that they don't believe in God. More broadly, it's a chance for them to tell me and the other members of the hospice team how we can support them, and what is off limits. In fact, several patients have told me that they don't want to hear anyone talk to them about how their death was part of a larger plan. They just didn't want to hear it from us. So we made sure they didn't.

That can be especially important when a family encompasses a range of religious beliefs. For instance, I took care of an older woman recently who was a confirmed atheist, as was her eldest daughter. But her two sons weren't, and one of them was a Baptist minister who insisted on praying with -- and for -- his mother and the rest of the family.

Fortunately our hospice chaplains are adept at reading these sorts of situations. They have to be, since they provide spiritual support to people with a wide range of beliefs. In that case they were able to broker a compromise that preserved family harmony, but which protected our patient from prayers that she was finding increasingly distracting and intrusive.

It's our chaplains, too, who have helped me to be more comfortable in talking about religion with atheists and believers alike. They're remarkably flexible in adapting to the needs of our patients, whoever they are and whatever they believe. A Baptist who needs to pray? Fine. A Buddhist who needs a clear mind to meditate? OK. For our chaplains, as strange as it may sound, atheism is just another set of beliefs that deserve our respect and support. Just as much respect, in fact, as we give to Baptists or Buddhists. And that's an attitude that I hope Rebecca Hensler's efforts will promote.