Support

On Cancer: Recognizing and Relieving Persistent and Debilitating Grief

By Andrea Peirce, BA, Writer/Editor  |  Monday, June 23, 2014
Pictured: Wendy Lichtenthal Memorial Sloan Kettering clinical psychologist Wendy Lichtenthal says new ways of easing persistent grief are gradually coming to light.

Grief over the death of a loved one is a normal part of the human experience. However, healthcare providers at Memorial Sloan Kettering and elsewhere increasingly are recognizing that a small subgroup of bereaved individuals experience intense and severe grief that refuses to lift over time. Some studies suggest this may affect as many as one in six people.

“Everyone has their own path when grieving, and for many, missing a loved one lasts a lifetime,” explains Memorial Sloan Kettering clinical psychologist Wendy Lichtenthal, Director of the Counseling Center’s Bereavement Clinic.

It’s entirely normal for an adult who loses a spouse, life partner, or child to have feelings of yearning for the loved one that has died, and to be shocked, dazed, or even numb for some time. He or she may initially have significant trouble accepting the loss, avoid reminders of the lost loved one, express feelings of bitterness, struggle with a sense that life is empty or meaningless, or have difficulty moving on with his or her regular activities.

While there is no right or wrong way to experience loss, mental-health professionals do get concerned when after half a year or so, several of these symptoms are persistent or severe, are experienced daily, and are disabling,” Dr. Lichtenthal says.

A Topic That Deserves More Research

In recognition of the growing body of evidence that this type of experience can be debilitating, contributors to the most recent edition of the major reference manual for mental-health professionals — the fifth version of the Diagnostic and Statistical Manual, or DSM-5 – introduced persistent complex bereavement disorder as a condition that merits further research.

Dr. Lichtenthal explains that individuals suffering from this possible syndrome display a stable pattern of symptoms that remain intense and are persistently debilitating for a year or more. “These individuals are not only deeply missing their loved one but also often feel stuck in their grief and have difficulty processing their loss as real, despite the passage of time.”

As a practitioner and researcher, Dr. Lichtenthal has observed the phenomenon many times and is examining the condition through clinical trials and research with doctors who work with bereaved individuals. For example, a clinical trial that recently opened for enrollment at Memorial Sloan Kettering aims to find helpful interventions for parents who have lost a child to cancer.

Why Define Persistent Grief?

Mental-health professionals caution that when assessing people for persistent grief, it is extremely important to take into account the context in which their grief is being expressed and the nature of the relationship they are mourning.

For example, Dr. Lichtenthal says, it’s entirely normal for a parent to be absolutely devastated over the death of a child and have difficulty adapting to this profound loss after a year or more. “The grief lasts a lifetime for most parents. As clinicians, we want to find ways to help those who find it difficult, over time, to find ways to reengage with life and coexist with their grief.”

She cautions that “we don’t want to overpathologize grief and make it into something that is psychologically abnormal or unhealthy. Many individuals do find ways to adapt to their loss. But we do want to have a definition — a language — for communicating both with other clinicians about people who really could use help and with other researchers, so that we advance science in this area.”

Offering Help

Though every person’s situation is different, there are some general ways that individual or group counseling might help ease suffering from more persistent and debilitating grief:

  • It teaches methods to experience and tolerate painful feelings. To pretend the loss did not occur doesn’t help. “The rub about grief is that working with it involves feeling it and finding ways to tolerate the pain,” explains Dr. Lichtenthal.
  • It helps work through means of thinking about being in the world without that person. People often get stuck at this point, throwing themselves into activities to keep busy and avoiding processing the loss and the reality that their loved one is no longer present.
  • It explores ways to continue to stay connected to the loved one so that reengaging in life does not feel like a lack of sentiment or a betrayal.
  • It teaches people to not criticize their emotional responses. Sometimes people get stuck on how they think they “should” be feeling or acting.
  • It offers tools such as focused journaling to take stock of the loss. - It shows ways to make meaning of the loss and consider the impact the lost individual has had on one’s life.

Dr. Lichtenthal notes that ultimately, some people are simply ambivalent about feeling better. “The trick about grief is that it maintains that connection and lets us know that our loved ones are still part of our world. It can feel like betrayal to let go of the mourning.”

But with professional help and progress in research, more strategies may well become available to ease the suffering of people profoundly debilitated by grief.

Comments

What about grief when you watch a loved one deteriorate because the doctor at Sloan refused continued treatment? What about anger when the oncologist looks at a patient & makes an assumption about their condition rather than do a medical follow up? What about when the oncologist makes a mistake & rather than help & heal the patient, he refuses to let any other doctor at Sloan help????

Melissa, we are sorry if you are unhappy with your loved one's care. Please know that our Patient Representatives are here to help address your concerns. We have sent them your concern, and you can contact them directly at 212-639-7202 to discuss this in more detail.

These "experts" in grief haven't lost a child have they? Please. You haven't a clue what you're talking about unless you've buried your own. If your child dies, then you get to decide what's best for YOU, not for ME. You are no expert "Dr."

Sandy, our deep condolences for your loss. We passed your comment on to Dr. Lichtenthal, and this is her response:

Ms. Wheeler, I am so terribly sorry for your loss.  You are absolutely right, no one can possibly understand what it’s like for a parent to lose a child unless that person has been through it themselves—and still, even then, as you suggest, what each person has gone through and needs is different.  For this very reason, the intervention project referenced in the post above (http://www.mskcc.org/cancer-care/trial/14-102) has been and will continue to be developed with the expert input of parents who lost a child to cancer—these parents have provided invaluable feedback about how to best support other bereaved parents.  In my opinion, any mental health professional who works in this area should humbly acknowledge that they are not the expert here—you are the expert of you.  While recognizing our own limits, I hope we can still find ways to do something to support those who have been through such a devastating experience. 

I don't need an "intervention" or "treatment" as I'm not broken. Your last line about support, yes thats what I need. But others treating me as if I am somehow wrong or sick for have "severe" symptoms is offensive. I am grieving. And if I am the expert, let me grieve.

Sandy, we passed your comment on to Dr. Lichtenthal again, and this is her response:

I think you raise such an important point about how the way we word things (using words like "intervention" or "severe") and how it can be perceived or make someone feel; thank you so much for this. Support providers often use words like intervention without implying that how someone is feeling is "pathological," but you are so right--we should be extremely mindful about connotations and how such jargon comes across to those we are trying to support. I am grateful for you drawing attention to this, and sincerely wish you everything you need during such a difficult time. You mentioned needing support, and if there is any way we can assist you in obtaining this support, please feel free to call the Counseling Center at 646-888-0200.

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