Hospice admission — end-stage colon cancer

DRHello — you must be Nola. I am Dr. Whitfield, one of the physicians with the hospice program, and this is Dana Okafor, the nurse who will be leading your care team. Thank you for letting us come to the house.

PTWell, you are the first doctors who ever offered to come to me instead of the other way around. Sit anywhere. Mind the cat.

FAMILYI am Karen, her niece. I have been staying over most nights lately. She says I hover.

PTYou do hover, sweetheart. But somebody has to do the paperwork.

DRWe are glad you are here, Karen. Nola, I have read through the records from your doctors, but I would rather hear it from you. Tell me where things stand, in your own words.

PTWell. You know about the cancer. It started with the polyps — for years they kept finding them, taking them out, finding more back there. Then last year it was not a polyp anymore. The cancer has grown across a whole stretch of the colon now. The specialist sat me down last month and was honest with me. He said anything more they could do would take more out of me than it would take out of the cancer. And I said, then I believe we are done. I am seventy-five. I am not done living, but I am done fighting.

DRThat takes real clarity. So let me ask the question that matters most: what do you want the time ahead to look like?

PTStaying right here. This house, my flower beds out front, my shows, Karen, and the cat. I do not want to die in a hospital hallway under those lights. And I do not want to hurt more than I have to. That is the whole list.

FAMILYShe has been very clear about it for months. My job is making sure everybody listens.

DRThen our job is simple: comfort, at home, on your terms. That is exactly what hospice is for. Can I ask about symptoms? Start with pain.

PTThe belly aches most days — dull, low down, comes and goes. And my back — the back has been bad for twenty years, that is nothing new. Some days the two of them gang up on me. The pills keep it just about bearable.

NURSENola, I have the medication list from the pharmacy, and I want to make sure it matches what you actually take, because it is quite a list. Acetaminophen, the 325s. Simvastatin, 10 milligrams, for cholesterol. The OxyContin — oxycodone 10 milligram extended-release. Percocet — that is acetaminophen 325 with oxycodone 10 — for the bad stretches. Tramadol 50. Naproxen sodium, the 220s. A hydrocodone 10 milligram extended-release capsule. An amoxicillin-clavulanate left over from the dentist. And a fluoride gel.

PTThat is the drawer, yes. Different doctors, different years. Some days I could not tell you which one does what.

NURSEThat is exactly why I read it out. Over our next visits we will get it organized — a written schedule, what each medicine is for, which one is for breakthrough pain — so you and Karen are not guessing at two in the morning.

FAMILYThank God. I have them sorted in a muffin tin right now.

NURSEHonestly, a muffin tin beats half the systems I have seen. One thing I will be asking about every single visit, because of these pain medicines: your bowels. They slow everything down. Are you moving your bowels regularly?

PTSlower than I used to, but yes, most days. Karen keeps pushing the prune juice.

NURSEKeep pushing it, Karen — fluids, and you tell me right away if things stop. With this cancer and these medicines, that is the one we never ignore.

DRBesides pain — appetite? Energy?

PTAppetite is small. I eat like a bird and Karen fusses. And I am tired. I sleep more afternoons than not. They always said my blood ran low — the anemia — so maybe that is some of it.

DRIt likely adds to it, along with the illness itself. Here is how we think about tiredness in hospice: we spend your energy where you want it spent. Flowers in the morning if that is your best hour, rest after. Not every symptom needs a pill. Now — housekeeping, and Karen, this is your department. For hospice, two physicians certify that the illness has reached the stage where comfort is the right focus. I have completed that certification with her attending doctor. That is done. We also send the formal notifications — her primary doctor and her insurance both get notice that hospice is coordinating everything now. Nobody here has to make those calls.

FAMILYSo her regular doctor already knows? Good. I was dreading that phone tree.

NURSEAll handled. And today counts as your initial assessment — I will look you over head to toe in a few minutes — and from it we build your individualized plan of care. That is the document that says what Nola wants, what we do about it, and who comes when. Yours will say: home, comfort, flowers, cat.

PTPut the cat's name in it. Biscuit. He will be offended otherwise.

NURSEBiscuit goes in the chart, I promise. Here is the rhythm. I will come a couple of times a week to start, more whenever you need me. An aide can come to help with bathing and dressing, if you will allow it. There is a social worker, and a chaplain if you ever want one. We can bring equipment too — some folks like a hospital bed downstairs, grab bars for the bathroom.

PTNo hospital bed yet. I have slept in my own bed for forty years and I intend to keep at it a while. The grab bars I would take.

NURSEThen the plan says grab bars yes, bed not yet — and that is your call to change, not ours. And this number here answers twenty-four hours a day, every day of the year. Two in the morning, Christmas, does not matter. You call, a hospice nurse answers.

FAMILYWhat about when it gets harder? Everyone keeps warning me it will.

DRIt may, and it is the right question to ask out loud. When it does, we bring more to the house — stronger scheduling of the medicines, more visits, whatever comfort takes. What we will not do is put her through an ambulance ride and an emergency room, unless she asks for that. Nola, I want to hear it from you directly: if your heart or your breathing were to give out, what do you want done?

PTLet me go easy. No machines, no pounding on my chest. I lived through a rough marriage a long time ago — I did my fighting then, and it taught me the difference between fighting and suffering. I am choosing easy now. Karen knows all this.

FAMILYShe has told me for years. I will honor it. Does not mean I have to like it.

DRYou do not have to like it, Karen. You just have to love her, and that is plainly covered. We will write Nola's wishes into the plan of care in her own words, so every nurse and aide who walks through that door knows them without her repeating herself.

PTGood. I hate repeating myself.

NURSEThen let me do my listening and checking, and I will write everything up. Nola — right now, this minute, is the pain all right?

PTRight now? Sitting in my own chair with my cat and people being straight with me? About as good as it gets.

DRThat is the feeling we are here to protect. Dana will see you again in two days, and Karen, you can call that number tonight if anything at all comes up.

FAMILYThank you. Both of you. This is the first day in a month I feel like I can breathe.

PTSee? Hovering less already. Go on, nurse, do your listening. Biscuit will supervise. He is a hard judge, but fair.