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.