Friday, January 02, 2009

POA, POA, my kingdom for a POA

In health care settings we are always aware that we are encountering but a tiny slice of a patient's (and family's) life. We try our best to understand the person and family but sometimes the task is like trying to assess the overall health of a human body by looking at a single "slice" of a CT scan. You can see what's right in front of you but not what came before, except by inference. Sometimes things sort of make sense but other times something comes blasting into the situation as if from left field.

I am thinking of a patient who was admitted to hospice care. Six people were involved in the decision (the patient was in a coma and couldn't make decisions). Five of the six believed that hospice care was in their loved one's best interest. The sixth did not, wishing for continued aggressive treatment. Where I live, the law sets up a heirarchy of relatives in terms of their right to make decisions for an incapacitated patient. A spouse, for example, takes precedence over an adult child, who takes precedence over a parent, who takes precedence over an adult sibling, etc. This heirarchy, however, is trumped by a medical durable power of attorney (MDPOA). If an MDPOA exists, the person who holds the MDPOA is the authorized decision-maker for the incapacitated patient.

In most cases, even if one member of a family holds the MDPOA, that member consults with other family members and a consensus is reached. That's a good outcome, because the burden of making life-and-death decisions (like withdrawal of life support when a situation appears beyond recovery) is enormous upon whomever is tasked with the decisions. If the family is in agreement, the burden is shared, and the members of the family can support one another through the tough time.

Sometimes that doesn't work, and existing conflicts in the family come into play and get acted out around the end-of-life decisions. A family member who has historically felt disempowered may be vocal in opposing the care plan determined by the MDPOA, and that gets hairy, because the opposed family member often attempts to engage the caregiving staff against the MDPOA. The law is clear, however, that the right and responsibility to act for the patient rests with the MDPOA. So the opposed family member really cannot be allowed to determine the course of treatment, unless the MDPOA agrees. I have seen families where old sibling rivalries explode into fights over care of an incapacitated parent, and also seen families where old rivalries for a family member's affection produce agonizing conflict over who really was close enough to the person to understand their wishes, the law be damned. Often you can't figure out what the fight's actually about when it explodes. And when deep pre-existing conflict is at the bottom of the fight, you shouldn't put any money on the possibility of reconciliation any time soon.

In the family I'm thinking about, the patient was admitted to hospice, and five of six relatives agreed to make that choice. From the understanding of the hospice staff, no MDPOA existed, and among the five in agreement were several who are right at the top of the legal heirarchy. The one dissenting relative cannot overturn the choice, except--after several days of private and public stewing, the dissenting relative claimed to hold the patient's MDPOA. Yikes. That could change everything. If the relative were to produce a valid MDPOA, then it may be back to the drawing board, even though the incapacitated patient has apparently been pronounced incurable by a number of medical specialists.

It can be difficult to see where God is when the tempests are raging. The family member whose needs are most important would seem to be the incapacitated patient, who is unable to make or articulate decisions about care or quality of life. Of course, when families are in conflict, every person genuinely believes that she or he is representing the true desires of the incapacitated one, even if that belief is fueled by personal need. In the shock and anguish of a loved one's end of life, we all hear what we most want to hear, and so interventions from staff have to be both compassionate and very clear. Sometimes the chaplain's role as I've experienced it is to find a way to affirm all of the warring family members while letting go of any expectation of facilitating a resolution. Sometimes clarification (and re-clarification as needed) of facts is helpful, to give relatives in great pain the option of engaging a channel other than the emotional. Sometimes social workers are the best support, facilitating family meetings, arranging for physicians to answer medical questions, etc. But the desire for a miracle can captivate family and care staff as well. The family, or some members, may desire that God restore their loved one's health or that God would turn the hearts of those opposed to their point of view. The care staff may get caught by the desire that the family be united in peace, which in most cases would be as big a miracle as the healing of the patient. My own notion of chaplaincy is to model straightforward acceptance of the "as-isness" of the situation. I find myself saying things like, "You and your parent may never agree about this; you represent two genuinely different points of view," but also saying things like, "The story's not over; I know you feel completely at odds with (whomever) right now, but who knows what the future may hold." That, and trying to actually be in the room with the anger and tension and the cloud of unknown history, and hold each member tenderly. And remind other staff that the family's fight is not with us but with each other, and it's old.

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