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

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.

 

Peter Singer, Blackmore and Weikart Discuss: Does Life Have Intrinsic Value?

Peter Singer, Richard Weikart, and Susan Blackmore

source: Premier Christian Radio

For those of us in hospice settings, the notion of “quality of life” is very important. There is disagreement however concerning what or who actually gives that life quality. This podcast from the UK program Unbelievable?  tackles both sides of the issue of what gives life value. Peter Singer and Susan Blackmore uphold the notion that life has no intrinsic value from a Creator, only from the value one derives from it, while Christian author Richard Weikart takes the opposite view. It’s a very good conversation with both sides taken seriously, and I was especially glad to hear from Peter Singer as his views are often shrouded in controversy. Click on the image above to be taken to the podcast page or click here. I hope you find it insightful.

Share your opinions below!

 

 

Crossing Divides: Can an Atheist be a Chaplain?

Can an Atheist be a chaplain?

It may seem like a ridiculous question, I know. However Great Britain recently named its first “Non-Religious Pastoral Carer” within its national health system. This sparked debate about whether or not it’s even possible for a non-religious person could technically be a “chaplain” given that the title itself has an obvious religious connotation.

While the argument is interesting, I don’t find it very helpful though. It becomes an argument about semantics and definitions. But frame the question this way and I think it gets interesting: Can someone of one faith provide spiritual support to another of a different faith, or of no faith at all? Put it that way and I think you are getting to a core question for those serving in Chaplaincy already, as well as those planning for ministry. Continue reading

Verbatim: Ms. F, “Maybe it’s not so bad”

(watch the video above before you read on: it’s funny, creative and has cute doggies)

I wanted to share my most recent verbatim which I’m also using for my certification. It’s in a bit of a different format and is definitely longer than most of my posts. Read on and I hope you benefit from it. You’ll catch why I included the video at the end of the paper. 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

Gerald May: The Chaplain as Physician

I’ve been reading the excellent book Simply Sane by Dr. Gerald May, primarily for my personal benefit but secondarily for professional benefit. It wasn’t recommended to me by anyone, and I honestly can’t remember how I stumbled upon it, but I’m glad I did.

Dr. Gerald May

It’s an excellent book for those doing pastoral care as well as teachers and educators. I recently read a passage that struck me as to how well it spoke to the position that many Chaplains find themselves in: wondering what to do.

I had an older woman come on service a few days ago who appeared to be greatly depressed. When I introduced myself and gave the usual opening “how are you today?”, her response was “I want to die. Can you give me a shot?” Continue reading

A. James Rudin: Clergy education for end-of-life questions inadequate

Rabbi A. James Rudin recently wrote about the growing need for clergy of all faiths to be prepared to help those dealing with tough choices related to end of life care. He asserts that often the questions being asked at the bedside of the dying are not as much related to deep metaphysical questions but are much more pragmatic and ethical:

Rather, [the] questions, usually asked in a hospital room, go like this. “My beloved family member is gravely ill. The doctors are recommending some extraordinary and complex medical treatments. I am confused and I am being asked to make a decision. As my spiritual leader, please tell me, what should I do?”

Unfortunately many clergy are not provided much opportunity for education in medical ethics and how it relates to their particular faith. Some denominations require some clinical pastoral education which, depending on the training center, would provide invaluable insights into the day-to-day decisions encountered in trauma units and hospices. But this represents only a very small group of those in ministry training, and an even smaller percentage of those currently in ministry. Other seminaries offer courses in medical ethics, but these are almost always elective. Because of these deficits, Rudin concludes:

Medical science and technology will move forward with or without the religious community. Major decisions about health care in the U.S., including the staggering question of withdrawing and withholding life support systems from desperately ill or comatose patients, will be made with or without the “benefit of clergy.”

If the best thinkers within our faith communities do not address these issues in a thoughtful and informed way, others will decide for us, and that would be an abdication of religious leadership. If that happens, rabbis, priests, pastors and imams will have no one to blame but themselves, and worst of all, desperately ill patients and their troubled families will be the losers.

What has been your experience as a minister or as a chaplain? Did you have adequate training to help others cope with complex end of life issues?