The Dark Side of Hospice

 

How can something be darker than dark? What I mean is although hospice has been touted as a more compassionate and gentle way to exit this world than to frantically undergo painful, futile and expensive last-ditch treatments, the hospice experience can end up ugly as well. One of my fans recently asked—nay, challenged me—to tell her story. Maggie (not her real name) described not one, not two, but several no-no’s on the part of her hospice team. For me even one such occurrence goes way beyond embarrassment as a hospice professional myself. I am enraged on behalf of sufferers when I hear about any purported providers of spiritual well being who intensify rather than reduce spiritual distress.

 According to Maggie, one of her top grievances was that the nurse “repeatedly tried to recruit me as a hospice volunteer while I was still in the process of tending to my husband and myself in his last weeks. The fact that they felt it was a good time to do this, iron hot and all that, did not make it either kind or effective.  Yes, I know I have the courage to face reality.  But that doesn’t mean it’s like an emotional ATM for hospice people to draw on. And it did make me feel that I was just a useful person to them, rather than someone needing to lean on them.”

 The chief irony here is that when people are receiving hospice services, either before or after the death, that is time when the hospice team typically urges families to receive the help of volunteers. If anything, my experience first- and secondhand was that families complained that this offer was made far too often. It saddens me deeply that Maggie experienced the opposite.

 As Maggie told me, the intrusiveness that I just alluded to was an issue as well, but chiefly in regard to a different matter. Often after a death, hospice “calls too often” regarding the offer of bereavement help. Maggie writes, “I asked them not to contact me further, but every week or so it seemed, a new batch of material came through the mail, tearing apart the thin cover that was developing over my grief.  I begged them over and over to stop it, but they only redoubled their efforts, inviting me to bereavement events. I explained I was doing all this on my own time, privately, with my son, and I really felt as if I was just being treated as a person in a government program, rather than a hospice relative.”

 Why the hospice team is loath to hear “no” has many causes, some superficial, some darker. When I worked for hospice, I was aware of the pressure to make sure our services were offered and utilized (like voting early and often). Government and medically related auditors such as the Joint Commission would look askance at health care organizations that seemed to skimp on making their services available. So alas, there is some truth that everyone in the healthcare system is “being treated as a person in a government program.” I did what I could to offer visits and bereavement calls without “bugging” anyone. In fact—here’s a true confession—while I was asked to call families twice about bereavement care, if the first time they said no, I usually did not call again unless I had a hunch that further along in the grieving process I should see if they had changed their minds. Despite not calling, I documented that I did so in order to provide the soothing comfort of statistics to the hospice supervisor and ultimately the government.

 As to the darker side of offering help? There may be the feeling of wanting to be needed. There may be, unfortunately, a sense of power from being a “helper.” Or it could have to do with one’s own issues of not having been helped at a critical time in one’s own life. Then, as Maggie confided, there is always the dynamic that arises between care givers and care receivers:

 “Looking back,” Maggie ponders, “I think some of this was the result of my own affect. I’ve had high powered jobs, have supervised many many people and programs at once, am used to making decisions and getting things accomplished, was fearless in my care of my husband even at his most helpless, and I suspect I came off as intimidating to the personnel attending, so they needed to show their own expertise.” [Maggie also hastened to add that there were many positive aspects of hospice, especially the care she and her husband received from the home health aide.]

What is your take on why and when those in the helping professions get off track?

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Announcement: A Review to die for of Encountering the Edge:What People Told Me Before They Died at http://secularchaplain.wordpress.com/2014/05/09/dying-to-read-this-book/

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