Hospice Bereavement Coordinator asks about reaching out…

Dear Dr. Neimeyer,

My question is related to the bulk of my role as a hospice bereavement coordinator, which is to reach out via telephone to identified bereaved family members of our hospice patients after the patient has passed.  The bereavement model employed is a “clean break” model, meaning the team that cared for the family prior to the death is not part of the aftercare. That is where I come into play.  I send a pamphlet, You’re Not Alone within a few days of the death.  In the opening page it states someone will be calling to offer support in the coming weeks.  I try to contact the identified person within 2-3 weeks following the death.  My calls are usually met with expressions of appreciation for the call and the care demonstrated to their loved one while in hospice care. When asked about how they are doing since the death, the majority of people state that they are doing well, they were expecting it, it was a relief, they had time to prepare, etc. Almost half refuse the offer of additional reading material and calls, and support group resources.

Granted, I am a stranger (to them), calling out of the blue and interrupting their day to ask them a rather personal question about something that people are usually reluctant to talk about in the best of circumstances!

I am left wondering if there is a better way of initiating the conversation and getting to some depth?  Is it even ethical to do so–open someone up to potential pain against their desire/or seeking it out?  I would be most interested in any insight or thoughts you might have on this.

Holly

Dear Holly,

Regarding your question, I imagine that the appreciative non-response that you receive from the great majority of families to which you reach out after the death of a loved one in hospice care is one part reflection of the families’ resilience–as 90% of responses to bereavement tend to be adaptive under such circumstances–and one part reflection on the “clean break” model you describe.  Not surprisingly, perhaps, families are likely to be more disclosing and receptive to further services when a “continuity of care” model is adopted by the hospice, palliative care, or other institutional setting involved in end-of-life care.  Not only do families come to know and trust the staff involved in bereavement care during the time their patient is receiving treatment, but staff can also develop a clearer idea of which families are struggling and are likely to merit close aftercare follow up.  Often it is quite clear which families also need care even in the end-of-life period, when individual or family counseling can be extended to those who display particularly anguished anticipatory grief reactions.

But on the presumption that you cannot single-handedly change institutional policies, what can you do to help ensure that a higher percentage of those who merit post-loss support actually receive it?  Here are a few ideas to consider.

1.  Touch base during the pre-loss period.  If the policy of your hospice is to offer support to all families after the death, whether or not they accept it, then might you make your preliminary contact with them during the period of hospice care, rather than after?  A face-to-face meeting at that time to express concern and interest in how they are doing can do much to consolidate a relationship, as you can then let them know that you will check back with them in the future.  The later call is then more likely to be received with greater openness and receptivity to more contact.

2.  Evaluate known risk factors for complicated grief.  In our research, such factors as lower levels of education and economic constraints are associated with more anguishing anticipatory grief during the end-of-life period, and emotional or practical dependency on the patient, anxiety proneness, spiritual struggle during the end-stage illness and difficulty making sense of the pending death and its implications for survivors’ lives all predict higher levels of complication during palliative care as well as in the months following the death.  As valid measures exist for all of these factors and others that forecast poor bereavement outcome (e.g., death of a spouse or child, violent death loss), monitoring these circumstances during hospice care could help determine the minority of families that are likely to benefit from more support or therapy following the loss.  Where this is not possible, identifying these in case conferences that pool professional evaluations may prove a feasible alternative. For such families, an in-home visit might go farther toward opening the door than would a simple phone call.

3.  Target your inquiry to those who are most vulnerable.  Very likely you will speak to a single family member in your follow up call, and not necessarily the one most in need of help.  Inquiring into who in the family seems to be coping best with the loss and who seems to be having a harder time could open some doors to further contact or conversation with the most relevant person(s).  For example, in the case of the death of a young or middle aged parent, the surviving spouse might decline offers of support, but welcome attention for his or her children, and adult children who do not themselves feel the need for further care or counseling might welcome it for a surviving parent who is grieving deeply following the loss of a partner.  Expressing an interest in working with the recipient of the call to address these needs (“Yes, that does sound like he/she is having a hard time.  Do you think it would be better for me to check in by phone with him/her directly, or find a time to stop by?) might help you reach those most in need, rather than attempting to throw a lifeline randomly to whoever answers the phone.

Dr. Neimeyer