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.

Getting Your Foot in the Door: 8 Ways to reduce “declines” for chaplains

the chaplain makes his rounds

One issue that I see frequently coming across chaplain discussion boards is that many have increasing numbers of those declining chaplain support. One poster, a hospice chaplain in Georgia, said her declines went from 10% five years ago to about 35% now.

Many believe that the refusal of spiritual support is due to a decline in religiosity overall in our country and culture. That may be true, but I don’t think it accounts for the majority of declines. Even though the Pew Research Center found a nearly 8 point percentage drop in those professing Christianity between 2007 and 2014, about 70% of Americans still identify as a member of some Christian church or faith group. From my own experience I can say as that I have had many accepting of chaplain support who were atheist or agnostic, or believed in God but did not consider themselves religious.  And no these were not millennials, these were your typical elderly hospice patient. Continue reading

Spiritual Communication Boards for the Critically Ill: Wall Street Journal

This came across the line from the APC and thought it was such a brilliant and simple idea. The text is included below but please access the full article here.

When William Campion was in the intensive-care unit this month after a double lung transplant, he felt nervous and scared and could breathe only with the help of a machine.

Joel Nightingale Berning, a chaplain at Mr. Campion’s hospital, New York-Presbyterian/Columbia University Medical Center, stopped by. He saw that Mr. Campion had a tube in his neck and windpipe, which prevented him from speaking. The chaplain held up a communication board—not the kind used to check a patient’s physical pain and needs, but a “spiritual board” that asks if he or she would like a blessing, a prayer or another religious ministry. The board also lets patients rate their level of spiritual pain on a scale of 0 through 10, from none to “extreme.” Continue reading

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

Support our Nicaragua Trip!

la-ben-1

Something a little different if you don’t mind…

In June 2017, my family will have an opportunity to go on an international mission trip to Nicaragua.  The trip is being coordinated through our church, New Community Church, in partnership with Agros International.  This trip is the seventh team from our church to go into Nicaragua to build relationships that both support and encourage the people there who are working hard to move out of extreme poverty using loans provided by Agros International. Continue reading

The Unproductive Chaplain

welcome to the machine

welcome to the machine

I wrote previously how chaplains need to be productive, and how to do that. I now want to unravel all that. Productivity may be how we prove our worth to our employers, however it can also run counter to how we do that, and even to our ability to do that. Continue reading

Merry Christmas from the Chaplain’s Report!

I wanted to pass along my thanks to all of my readers. This blog has reached far beyond where I thought it could. I’ve had over 18,000 visitors this year from every continent in the world. Thank you!

This year – and this month – have been especially busy so I haven’t had the time to write as I want, but look for something soon. Keep sharing!

God bless you, wherever you are. Continue in the good work that God has for you to do.

The Productive Chaplain

here we see a Chaplain being productive…

If you’re a professional chaplain you have probably heard this phrase: “Let’s talk about your productivity.” For anyone the “productivity” talk is uncomfortable. For chaplains this talk is often more uncomfortable because what we “do” and “produce” can be very hard to grasp. Continue reading

Chaplain Kerry Egan On Fresh Air: ‘On Living’ 

Hospital and Hospice Chaplain Kerry Egan was recently featured in an interview on NPR’s Fresh Air. The interview concerns her new book based on insights she’s had over the years working with dying patients. It’s not only a great look at chaplaincy for those who’ve never encountered it, but full of great “a-ha” moments for those of us serving as Chaplains.

Some highlights are found here.

Hear the Fresh Air program for October 31, 2016

Source: Kerry Egan On Fresh Air: ‘On Living’ : Shots – Health News : NPR

Effective Swearing for Chaplains (and Other Clergy Too!)

***trigger alert: as this is a post about colorful language, be aware that there is colorful language abounding after the jump***

Clergy, sometimes it’s OK to use swear words. That’s the summary. For the full text click below, but language aboundeth herein

Continue reading