Take the case of Mr. Martinez, * a terminal lung cancer patient. Most hospice patients have a DNR--a "do not resuscitate" order, which directs hospital and emergency personnel to NOT use life-saving techniques such as CPR or a ventilator, but to let the patient die naturally. Mr. Martinez, a native of Argentina, does not have a DNR, although he would like to have one. Why? Because his son, who still lives in Argentina, wants the father's life prolonged until he can make it to the United States to say goodbye to his father. The father doesn't have the heart to disagree. While this seems like a natural desire in a way, it really is very selfish, the nurse explained--it would mean keeping the father alive, perhaps in pain, just so the son can meet his own emotional needs. And it's not like the son never sees the father; he visits every couple of months, and has had plenty of opportunity to say a meaningful goodbye. Because what do you really gain from seeing an empty, non-communicative shell that's kept alive by a machine?
The nurse I know said this is a common situation--family members simply can't let go, even when the end is imminent. So it has become her job to try and convince the son--via e-mail, since he is in Argentina--to encourage the father to have a DNR. Not a task I envy, that's for sure. It's one that requires great finesse, compassion, and understanding. And a thick skin, to boot. All done in a one-way conversation, without facial expressions, body language, or vocal inflection--all tools that can be extremely helpful when trying to talk about something so serious and traumatic.
Mr. Martinez's son, an out-of-town family member, is what one of the nurse's co-workers calls a "seagull"--someone who flies in, sh**s on everyone and then flies out. They want to help, and they (usually) have the best of intentions, but they don't really know the day-to-day situation or the intricacies of their family member's care (or health condition). So they rather muck things up. Often, they step in so aggressively and vehemently because they feel guilty for not being there on a more regular basis, the nurse told me, so they feel they must "fix" what seems "broken" to make up for that absence. When really, the opinionated assistance often does more harm than good.
But it's not just the "seagulls" who can cause a wrinkle in a patient-care situation. Nearby relatives, even daily caregivers, can create serious problems, the nurse told me. She related the story of one family where two sisters were, in her words, "at each other's throats." Just about literally, it seems. One of the sisters actually called 911 on the other sister because she felt that sister wasn't appropriately administering the patient's medication.
The kicker? The patient's problem was agitation. I doubt if sirens, police, EMTs, and whoever else showed up helped alleviate the symptoms the sisters *claimed* they were so concerned about.
This is another situation that, as a health care worker, would be a sticky one to resolve (if a resolution was even possible--a temporary cease fire might be your best bet).
This is not to say that family members are always a source of trouble and ire. As the nurse told me, "Family can also be the greatest resource." When that happens, it makes the health care worker's job infinitely easier and richer. So you hope and pray for this scenario.
But for those times when the family members seem to be working against you rather than with you, I imagine you must tap deep into yourself for strength, composure, patience, and endurance. And still, even though it seems undeserved, compassion. Because while the family members may be making your life hell, you have to realize that their life is hell right now, too.
Come alongside. Understand. Empathize. And then maybe you stand a chance not of changing the family, but of helping them to decide to change themselves.
* Names and details have been changed to protect patient anonymity.
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