We need to rethink grief

Artist Motol Yamamoto, who created labyrinths of salt to help express his own grief at the loss of his sister due to brain cancer. Click on the image for more information.

In my hospice, as well as in many others, when someone dies we consider the family members involved and rate their grief as low, medium or high. The thought being that if someone is on the low end, they will generally be fine. On the medium and high end though, we need to be more involved as this person may not cope well.

And I’m starting to think this is really missing the point.

There has been research recently in regards to complicated grief – grief that becomes debilitating to the point of becoming a chronic, life-limiting condition. This is the kind of grief that we in hospice are trying to identify, monitor and assist with. It differs from normal grief in that it is much more of a clinical condition, however it has many of the same characteristics as normal grief. The main determinants between the two, putting it simply, are duration of symptoms and the severity of them. Normal grief can involve impulsive crying, sleeplessness, rapid weight loss or gain, and even auditory or visual hallucinations. But they tend to subside over time and generally do not interfere with daily functioning. Complicated grief resembles PTSD, in that it can have these same symptoms but amplified and intrusive to the point where they cannot function normally.

First, I think the categories don’t make much sense because they tend to be totally subjective. I’ve tried very hard to look at research and develop tools to use to help us determine who is going to need more help or not, but in many cases it still comes down to someone’s gut feeling. The following conversation is one that’s often heard when we discuss the family of a patient who passed:

“What do you think about Mary B.? Low?”

“I think high. She was really crying when her dad died.”

“Right, but does she have any other issues? She seems to have good support.”

“Yeah but the facility her dad was at thinks she’ll be high.”

“Ok we’ll put her at moderate.”

That’s nonsense. Utter nonsense. It doesn’t take into account that crying, even extended tearfulness, is common and normal. It doesn’t ask questions about how this person dealt with grief in the past, what her beliefs are, if she has a history of depression or addiction, or the nature of her support. And there’s no indication at all that anyone has asked Mary how she thinks she will cope.

One of the biggest problems related to complicated grief is that there is very little understanding overall, even among hospice employees, about what complicated grief looks like and what constitutes normal grief versus complicated grief.

I think we need to move away from looking at complicated grief purely as a level of risk to an approach that focuses on the expectation of recovery and adjustment in the long term. We simply can’t guess at whether someone is low, medium or high risk and then hope for the best. Those of us who counsel the grieved need to investigate what normal adjustment looks like in the long run and give people the tools, and freedom, to help make sure they can grieve in their own way.

Finally, and perhaps most importantly, we need to ask people how they have coped with loss in the past and how they think they will handle this loss now and in the future. This puts the individual back in control of being the “expert” of their life, not us.

6 thoughts on “We need to rethink grief

  1. I am a Hospice Chaplain and I appreciated this article and passed it on to my fellow Chaplain and our Bereavement Coordinator. We talk a lot about maintaining the patient’s dignity and autonomy that their death is their journey not ours but you are extending this also to the family.

    In reference to the patient’s dignity you might appreciate my poem “I Am Not My Disease” at deelyzee.wordpress.com.

  2. Bang on, Sam, this is something I’ve been digging into in great detail these past few years because the Joint Commission decided to put a ‘risk of complicated grief assessment’ in the standards for palliative care certification. Fun. There is no such thing. The evidence on risk factors is still brand new and though some mechanisms are clear (pediatrics and suicide), even intuitive causes like sudden trauma are not necessarily risks. Furthermore, there is very good evidence (see George Bonanno’s brilliant work and his mass media book ‘The Other Side of Sadness’) that for at least 6-8 weeks after a death (including day of) there is NO WAY to predict where someone is going to be at the one year mark, which is the minimum for determining complicated grief. I empower my bereaved families by giving them my ‘prescription’ for ‘3-6 months of crazy’ and after that, here’s my number, call me and I’ll tell you that that’s okay too. Remember disenfranchised grief, i.e. grief for which you do not have permission (usually from yourself) is proven to cause a host of badness. So our role as clinicians preparing families for years of grief is to lend them our full authority to give themselves permission to grieve however they can.

    Finally, don’t get me started on measuring a risk for something for which we have equally NO CLUE what to offer above and beyond our usual (limited) bereavement resources. While there are some very good and promising ideas out there, there are no evidence based interventions for those found to be at risk.

    What does seem to work and seems to be based on the theory behind complicated grief (attachment theory and narrative re-construction) is meaning-making interventions, especially prior to the death. What few studies have been done show that people who endorsed the one-item statement ‘I found meaning in their death’ are at lower risk, people who set goals are at lower risk, and the big one is people for whom the bereaved is their primary source of identity (think of the daughter who spent 12 years caring for her demented mother) are at high risk. What this means for us is we explore and empower their transcendent narratives and try to incorporate their present (felt) spiritual understanding of the death into it. Sounds like chaplaincy, neh?

    When I can figure out how to set goals in my life, maybe I can try that one too! Ha!

    • Thanks Tim. I’ve run into the same thing in regards to our software needing to match the JCHO standards of “low/mod/high” without any indication of how to do it. Hopefully this is something that further research will flesh out more. And I brought up your ideas regarding meaning-making surrounding the death and identity to our support team today. Good stuff – easy and practical to implement.

  3. I agree especially with your final paragraph. Our responsibility as Chaplains is to empower patients and family members to take charge of their circumstance and their lives. We need to listen and help them process what they are feeling and experiencing.

    • Thanks Revgarth1! It’s something I’ve been passionate about for some time. I think this can be just another area where we become the expert in someone else’s life without knowing it.

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