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.

When All is Said and Done: Death and “Magic Words”

Your average hospice chaplain. Probably had 3 units of Level II CPE.

Recently I had a family whose mother was on hospice with us. When Isabel* had a sudden decline and became active her family gathered around the bedside and all started to say the things that families and caregivers – including hospice staff – feel that they need to say in order for the dying person to “let go”. They all said that they loved her and that they would be OK. They had out of town family come in and say good-bye in person and on the phone. They told her over and over again that it was OK for her to go. The priest gave last rites. This went on for well over a week.

Needless to say it was rough. The family came and went, said what they needed to say, and still Isabel seemed to hang on. There were a lot of thoughts and questions: “What haven’t we said? Is there someone that hasn’t said goodbye yet? Is she waiting to hear from someone? What are we missing? Why is she still here?

My best response was, “I don’t know.”

Continue reading

“Hope can harm dying patients”: F. Perry Wilson on Doctors, Families and Misplaced Hope

Our humanity, as well as our caring nature, often calls us to be sources of strength and encouragement to those who are in crisis. This is true of Doctors, Chaplains, Nurses – in fact the whole hospice team. We hate to be the ones delivering bad news, especially when we feel like the other needs comfort rather than reality when reality most likely is going to be awful.

F. Perry Wilson, MD, MS

Dr. F. Perry Wilson, in a video report on MedPageToday, reports on a recent study concerning what doctors and surrogates believed a terminal ventilator patient’s chances of survival to be. The study found major discrepancies between doctors and families, and while doctors were often more accurate in their assessment that knowledge was rarely transferred to the families in the study. Families were often too optimistic regarding chances of survival. There were several factors involved in this, including religious belief or hope for a miracle, the need to not “give up”, and even magical thinking (“If I circle 50% it might be true”).

The study and analysis reveal how medical clinicians and supporters, including Chaplains and Social Workers, can reframe “hope” to mean hope in a peaceful death rather than hope for a full recovery.

One piece of the puzzle that was not addressed was that this unwarranted optimism could easily be seen as part of the grieving process for families. While education about realistic expectations is certainly necessary and needed, resistance to this advice in favor of “hope” shouldn’t just be written off.  Denial, bargaining and magical thinking are part of the grieving process and may show that they are trying to wrestle with acceptance rather than avoid it.

 

Why Roy Focker’s Dead and Wolverine Isn’t (At Least Really): Death in Anime and American comic culture

Marvel Comics’ cash cow Wolverine has been dead now since 2014. At least until he isn’t dead anymore.

Yes, Wolvie died when his healing factor was turned off and, in an epic fight with a mad scientist, he’s now entombed in the unbreakable metal adamantium. It’s a poetic tragedy in that adamantium was what originally coated his bones and trademark claws making him basically unbreakable. Now the metal is on the outside and Wolverine has suffocated to death.

Probably.

I’m actually impressed that Marvel has kept him dead this long. He’s died on at least 40 occasions after all. Granted, many of those are in alternate timelines and “What if?” titles, so you can’t really count them. But the 2014 Death of Wolverine story seems to be the first time Wolverine has died and stayed dead. Continue reading

“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

Too Close to Home: Hospice workers and personal loss

Within the past 6 months two of the nurses I work with lost their mothers. In both of these cases, they chose to have their mothers on our hospice.

This is a very hard thing to do. It was awkward for a while for all of us at team especially to be referring to and discussing someone in a very clinical manner, yet knowing that this was a team member’s mother. Yet it was also a good reminder for all of us that all of our patients are someone’s mother, father, brother, sister, or even child.

The awkwardness goes away after a brief time. However when that loss finally happens it can be devastating, not only to the family member but to the whole team. Continue reading

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

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