Why We Get Complicated Grief Wrong

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.

Amy Kumm-Hanson: The incarnational nature of Chaplaincy

photo: A.Kumm-Hanson, Iceland 2016

From Amy Kumm-Hanson; I thought her words spoke a great deal about the difference between the nature of Chaplaincy and its place in ministry.

Chaplaincy is not a cerebral ministry of long hours spent in a pastor’s study in preparation for preaching. It is holding hands through bed rails and wearing isolation gowns and being willing to literally stand in suffering with God’s beloveds. It is not about translating Hebrew or Greek from ancient texts, but about translating scripture into something now that matters to the mother who is delivering her stillborn child or the son losing his father to cancer.

The theology of the cross is particularly apparent to me in my hospital work. This theology holds that God’s love for all of creation is most clearly seen in the act of dying on the cross.  That God did the most human thing of all, which is to die. The theological conviction that shapes my ministry as a chaplain is that God knows what it is to suffer and to die, and there is no place that God is unwilling to go, even death. This is good news for all of us who feel immersed in suffering, our own or that of others.

Read her whole post here.

“What do these stones mean to you?” Reflections on Joshua 4

The following is from a remembrance service I did at a facility some years ago. At the end of the service we passed out stones to the families and staff in attendance. I hope you enjoy it.

…Joshua said to them: “Cross over before the ark of the LORD your God into the midst of the Jordan, and each one of you take up a stone on his shoulder, according to the number of the tribes of the children of Israel, that this may be a sign among you when your children ask in time to come, saying, ‘What do these stones mean to you?’ Then you shall answer them that the waters of the Jordan were cut off before the ark of the covenant of the LORD; when it crossed over the Jordan, the waters of the Jordan were cut off. And these stones shall be for a memorial to the children of Israel forever.” Continue reading

Chaplain Tom Becraft on Caregiver Burnout

I recently read a fantastic article by Tom Becraft on managing the seemingly unmanageable barrage of stress and grief that can come in heathcare chaplaincy. He begins with the summary of the first hour of one day:

  • 6:30 a.m.   The morning shift is just starting. I have just entered the office and am taking off my coat. The desk phone rings. It is from the nighttime hospital supervisor regarding an unfolding situation in Room 1040. A 34 year-old mother of four small children has had a massive stroke apparently caused by a sudden dissecting carotid artery. Brain death is likely. Considerations: how to emotionally and spiritually support this large non-English speaking family; how to facilitate the organ donor requester process; how staff, some of whom are young mothers, might experience this death; how to prioritize. I clip my cell phone and pager to my belt and head out.

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Why I’m a Chaplain – II: Connecticut Hospice

Last time I talked about how my dad’s illness and death helped guide me toward hospice. What I hadn’t mentioned was that he was never on hospice – we didn’t even have time to consider that. My first experience in hospice care came while I was in seminary at Yale Divinity, where for a time I volunteered at Connecticut Hospice.

This was my first experience with any kind of hospice. My responsibilities were pretty light – empty the garbage cans by the bedside, make sure the water pitchers were full. But it was quite an interesting experience and one that, along with many others, pointed me in the direction where I am headed now.  Continue reading

Why I’m a Chaplain – I: My Dad

I thought I’d start a series talking less about the practicalities of hospice and chaplaincy and share a bit about what got me to this place in life. Even these are going to be numbered don’t think of them being in any particular order.

So first is my dad.

I grew up in rural western Pennsylvania on a 50 acre farm with my three sisters, mom and dad. My dad, besides running the farm, worked in a sintering plant. The steel industry in the area was on the decline, and I remember my dad alternately being laid off, then working odd shift hours, then being laid off again and so on. But something significant happened when I was in about middle school: my dad was diagnosed with Acute Lymphocitic Leukemia (if I remember all that correctly). Initially this came as a huge blow to our family, but our doctor said that if you were going to get Leukemia this is the type to get. It was not itself fatal, and could be managed fairly well. Continue reading

Sample CPE Verbatim: Allowing for authenticity

The following is an excerpt from a Level II verbatim I did several years ago to give you an example of how I wrote toward the Level II standards.

This case ended up being one of my most difficult, in that the patient was a child and I was good friends with his mother. His death was hard on all of us. As I have children this child’s age, it cut very close for me. Perhaps a bit too close. This visit is a follow-up regarding her son’s death. I think you’ll see several themes at work:

  1. who is caring for whom?
  2. recognizing defensiveness
  3. allowing space for authenticity and giving permission to be authentic
  4. theodicy – how does God work things out for the good when a child dies?
  5. self care

While I see these themes at work, I don’t think I touched on all of them in the conversation.

Feel free to comment!

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Jesus loves you, but you’re still going to die

Every so often in hospice you get asked a baffling question, one that you don’t have a ready answer for. Sometimes it’s because the answer is simply beyond fathoming or beyond a simple explanation: “why is this happening to me?” or “why does God allow so much evil in the world?” Other times I’m baffled because the answer seems so obvious that I’m trying to understand why it’s asked at all. Such was the question I had posed to me a while back:

“Why does God have to take my mom? She never did anything wrong!”

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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. Continue reading

Joshua 4: Message for a facility memorial service

I thought I’d pass this recent message from a memorial service our hospice hosted at a personal care facility. They had started a rock garden and we donated a tree to serve as a memorial marker.

…Joshua said to them: “Cross over before the ark of the Lord your God into the midst of the Jordan, and each one of you take up a stone on his shoulder, according to the number of the tribes of the children of Israel, that this may be a sign among you when your children ask in time to come, saying, ‘What do these stones mean to you?’ Then you shall answer them that the waters of the Jordan were cut off before the ark of the covenant of the Lord; when it crossed over the Jordan, the waters of the Jordan were cut off. And these stones shall be for a memorial to the children of Israel forever.” Joshua 4:4b-7

This scene marks a pivotal point in the history of Israel. This nation of former slaves has survived forty years in the wilderness, scraping by only at times by means of miraculous intervention, to arrive at the land promised to them several generations before. Nobody who heard that promise is alive to see it fulfilled. Even Moses, who lead the bedraggled group for those 40 years and who was for all that time their closest connection to God, died before this scene. This nation of nomads has finally arrived at the end of their journey from slavery to freedom.

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