I recently switched positions in my company to help manage our bereavement services. Don’t worry – I’m still in the field as a chaplain as well (with a very limited caseload – something I asked for)! I had a great deal of experience working in bereavement in my prior company so this has been a good fit so far.
However this move has brought up something that has always bothered me. That is even though that the staff I work with on a daily basis has years of experience in hospice care we still struggle with measuring and even recognizing complicated grief and bereavement.
Complicated grief is brought on by loss and differs from simple or “normal” grief in that it is chronic, debilitating, and associated with other illnesses such as clinical anxiety and depression. In hospice, we try very hard to support our families both before and after the patient dies. Part of this involves identifying risk factors in family members that may lead to complicated grief. In an overview of research provided by Burke and Neimeyer, clinically these factors include
- history of prior clinical depression or anxiety
- multiple stressers (concurrent losses, interpersonal difficulties, financial problems etc.)
- anxious, avoidant, dependent or insecure relationships
- history of substance abuse
- timeliness of death (death of a child or young adult)
- type of death (violent, suicide)
- lack of family cohesion and/or poor support network
- gender, income, culture, and education
However when I discuss deaths with others to see if someone may be prone to complicated grief, the reasons why are rarely associated with these clinical factors. Instead the feeling is more based on their current grieving, situational factors and good old “gut instinct”. It’s not uncommon at all for a staff member to tell me that a family member is “high risk” because they were very emotional, even irrationally so, at the time of death, without considering that this show of emotion is to be expected and in some cultures even required.
One difficulty I’ve found is that identifying risk factors prior to death is often very difficult. We may only have a few contacts with a family member before a death, and in some cases only one before the patient dies. It’s difficult to identify risk factors in that period of time, even with a good psychosocial assessment.
However the greatest hurdle we have is education. We simply do not know enough about what complicated grief is, how it progresses, and what signs to look for. Part of that is we don’t all agree what “grieving well” is. Naturally our own version of what “normal” is tends to overshadow how we view other people’s reactions, but our “normal” and theirs can be quite different. I find even most people who are grieving don’t know what “normal” is. I recently had a conversation with a woman whose mother died on hospice who was concerned that she felt guilty about being free from the burden of caring for her mother and wondered when those feelings would go away – 2 days after she died! I assured her that what she was experiencing was quite normal and that, to be honest, she still had a long way to go in her grief. She felt relieved in knowing that she was much more normal than she thought she was.
This is true for hospice staff as well. All staff who work with patients and families need to know what normal and abnormal grief looks like. The statement “they’re in denial!” should not be tossed around like an accusation toward a “noncompliant” patient or family member (more on that later) but as a recognition that denial is part of the grieving process and therefore is not a problem. Protracted, ongoing denial that is “stuck” can be a sign of difficulty coping. The prescription here though is not to get the other to see things your way but to to understand what they are going through. That requires patience and insight into the complicated dynamics of loss, relationships, and meaning that sometimes gets lost when you’re just trying to get someone to agree to have an oxygen tank in the home.
Chaplains can take the lead in this area in our teams, as we can often be the people who are needed to slow things down and address things that may be lost otherwise. We need to educate and reinforce to our staff what is and is not normal grief, and to be able to provide resources and support when we see someone at risk of complicated grief.
Research in complicated grief is frankly pretty scarce but it is growing. There are plenty of popular books about grief, but fewer scholarly papers. If you are interested in an overview of the research thus far the aforementioned article by Laurie Burke and Robert Neimeyer is a great overview. A quick search on Google Scholar will yield other articles, some of which are free to access.