Anticipatory grief, when a loved one is dying

Dear Dr. Neimeyer,

My question is about anticipatory grief, the distress that family members can feel when a loved one is receiving end-of-life care. I work in a palliative care unit of a large hospital, and we often have families who are overwhelmed with the reality of the patient’s impending death, to a point that they can’t take in the message that further treatment is medically futile–no amount of heroic interventions can restore the person to health, but only prolong the patient’s suffering. Almost always we can control the patient’s pain, and often do so in a way that permits conscious conversation, at least at times, with family members. But the further radiation treatments, surgeries, tube feeding and ventilation wanted by families who are “in denial” are anguishing to the patient who needlessly suffers them, as well as to staff who administer them.

So my question is, how can we talk to these families who seem to be seeking treatment for their own anticipatory grief, rather than for the ultimate benefit of the patient?

Judy

Dear Judy–

Just as you imply, most of us have a hard time taking in and integrating the reality of a loved one’s pending death, despite our best efforts to secure curative treatment. For a lifetime the patient has been a central part of our lives–a parent, a spouse, a sibling, a child–and making sense of a complex and dire medical diagnosis and often highly technological treatment regimen can be nearly as cognitively daunting as imagining life without them is emotionally perturbing. Our research documents how the resulting anticipatory grief can be part of a worrisome cluster of problems, which are exacerbated for people who are by disposition prone to anxiety, have low social support, struggle with their spirituality and belief in a benign God in the face of their loved one’s suffering, experience high degrees of dependency on the dying patient and especially who have a hard time finding meaning in the hard transition and their life beyond it. Your compassionate question about how to broach such issues in the context of treatment decisions therefore is a delicate but critical one.

My basic suggestion would be to ground the discussion in hope. That is, what do they hope for their loved one, at this point in the illness? If a cure, what signs would the family look for to know whether that was likely or possible? What signs would suggest it is not? If the latter, what more might they hope for–perhaps the patient’s comfort, or some precious time to be with the other in earnest conversation, or even loving silence, while the patient is at peace? What do they hope for for themselves, and their children or other loved ones, going forward? What decisions about caring for the patient or themselves would best advance these goals? Having an unhurried conversation of this sort in a quiet, private space can help families feel heard, and open doors to realistic but empathic discussions about their fears and hopes, and what hospital staff, chaplains and physicians can do to support them. Where more support is needed, a referral to a therapist on staff or in the community can help provide more continuity of care, at the end of life for the patient, and for the family beyond.

–Dr. Neimeyer