1. Getter, Amy MS, RN


The challenge of balancing honesty with kindness in hospice care.


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In our local hospice slang, they are known as a "tepee couple." Visualize a carefully constructed, strong, but potentially vulnerable affair; if one of the poles is removed, the whole thing becomes unstable and is easily dismantled.

Figure. Illustration... - Click to enlarge in new windowFigure. Illustration by McClain Moore.

This couple might be your elderly neighbors: he helps his wife into the house as she moves slowly, step by unsteady step, in time with her four-point cane; at the same time, you know that he is recovering from recent chemotherapy treatments. Or they may be your aging parents: your mother's role as primary caregiver hampered by her right leg weakness from a stroke and advancing heart disease, while your father needs more care from day to day as his renal failure approaches the decision to begin dialysis or not. They support and care for each other.


It's a little-or a lot-precarious.


I knock on a hospice patient's door; this is my first visit to their apartment. After a long pause, I hear someone call "come in." I enter and take in a hunched figure in a chair, dressed in a hospital gown. Her spouse, George, to my left, is struggling with a gallon of milk and trying to maneuver his walker out of the kitchen. We sit down at the kitchen table, George and I, slowly becoming acquainted. His wife, who remains silently huddled in the chair while we talk, has advanced dementia.


George tells me he's the "chief cook and bottle washer," having only a little help in the mornings to get her ready for the day. They've been married longer than I've been alive. As we review their needs and how he's managing, my heart aches for this man who barely has the energy to do what's necessary for himself. Yet his main concern is for his wife. Who will care for her, I wonder, when death finally claims him?


In hospice, I'm often confronted with the difficulty of balancing honesty with kindness. I love a quote often attributed to the Buddha: "When words are both true and kind, they can change our world." It follows that sometimes what is true is not kind, and that truth must be cloaked in kindness-as in this instance, as I sit at the table listening to George, whose hopeful, unrealistic comments confirm that he simply can't hear the truth.


The notes in his chart inform me that there have been other discussions-with the palliative care team during his last hospitalization, as well as conferences between his physicians, his adult children, and the discharge planners. He desperately wants things to remain unchanged, even with his steadily waning energy, as the cancer steals his life away. He needs to hold on to his dream.


The truth is this: he won't be able to stay here and continue caring for his wife; soon he may be bedridden. There will be a collapse in this fragile care-giving system.


My dilemma is that I understand his futile hope and I find myself not wanting to be the dream-breaker. We talk about his hopes: he'd like to stay in his home and have death occur naturally. I hope this for him, too; I just worry it probably won't happen. He will end up in the hospital, because neither he nor his family has a plan B, and he'll likely end his days in a nursing home. I'm sick that we have so few options for people without either the family willing or able to step in to be caretakers or enough money to provide around-the-clock caregiving in the home.


So I ask, "What can we do to help today?" This is something I can do for him: a little planning. I arrange for the bath aide, and a volunteer, and he says he will consider having a few more hours a day of help. I'll talk with the social worker about a care conference as soon as possible.


I prepare to go away, feeling ineffective and discouraged, wishing there were a quick fix for the too-common scenario of our tepee couple. But I realize that this is a lesson for me. My most significant contribution may be to hold George's hope, advocating for his dream however possible, while listening and providing support without regard for my own agenda. I've been known to say, "Why didn't they know this before?" or "Why didn't they have a plan for caregiving before they came home?"


Then I realize: this is the plan-George's plan.


Now he cheerfully assures me that he plans to get better and be able to do what he is accustomed to doing every day-soon, he hopes, with his usual stamina returned. He thanks me profusely. As I leave through the doorway, I feel like I've walked through a dream catcher-whatever it is that, at least for now, catches George's bad dreams before they can get to him, protecting him as he sleeps.