After the Fall: The Decisions Nobody Prepares You For

A broken hip forces two questions at once — whether to operate, and whether to give up hospice to do it. Here is what the evidence actually supports, and what the paperwork costs you on the way back.

The phone call

The facility called to say Lori had fallen and they suspected a broken hip. It was the pandemic. I could not go.

She was at stage seven by then. Bedbound, non-verbal, and had been for some time.

Access restrictions meant I could not be in the building and I could not be at the hospital. So I made the decisions that followed from my house, by telephone, with a surgeon I never met.

A lot of families made decisions this way in those years, and some are still carrying them. If that was you, you were not doing it wrong. There was no version of it that felt like enough.

I do not know how she fell. The facility said they found her on the floor. She may have got herself up — people do, even late, even when you would swear they could not. It is also possible that someone there was at fault and it was recorded as an accident. Nobody witnessed it, I was not in the building, and that is where it has stayed. Only God knows.

I include that because a great many facility falls are unwitnessed, and families are left holding the same blank space. If you are in it, you are not being paranoid and you are not being unfair. You are being asked to accept an account of the worst night of your year from the only party with an interest in how it reads.

The first fork: hospital means giving up hospice

She was on hospice. Taking her to the hospital for surgery meant revoking it.

This is the part almost nobody publishes clearly, and families meet it in an emergency department, handed a form by someone who has explained it forty times and no longer hears how it sounds.

Hospice is a benefit you elect. In electing it, you set aside Medicare coverage for treatment aimed at curing the terminal condition. If you then want that curative treatment — a hip repaired, say — the hospice election has to be revoked.

Mechanically, under federal rules:

• The patient or their representative may revoke at any time.
• It requires a signed statement with an effective date, and the date cannot be backdated.
• On revocation, the Medicare coverage that hospice had set aside resumes — and the remaining days of that benefit period are forfeited.
• The person may elect hospice again later, for any benefit period they are still eligible for.

Read that last point the way a family reads it: you can get it back. Which is true, and is not the same as getting it back quickly.

How I knew she was in pain

She was not crying out. She was not agitated. She was curled into herself with her arms held tense.

She could not tell me anything. She had not been able to for a long time.

What she was doing was trying to stay in a fetal position and holding her arms rigid. That was it. That was the whole signal.

A person with advanced dementia in serious pain may make no sound at all. Silence is not comfort. The absence of shouting is not the absence of suffering.

Clinicians use observational tools for exactly this problem. The most widely used is the PAINAD scale — Pain Assessment in Advanced Dementia — which scores five things, each from zero to two: breathing, negative vocalization, facial expression, body language, and consolability.

Body language is the one families miss, and it is where Lori scored. Rigidity. Clenched hands. Knees drawn up. Guarding a part of the body. Resisting being moved or turned.

You do not need to score anyone. You need to know that posture counts as evidence, and that you can say to a clinician: she is rigid, she is guarding, she cannot be settled — can we assess her pain formally? That sentence gets a different response than "I think she seems uncomfortable."

The second fork: whether to operate

I chose surgery to reduce her pain. Not to get her walking, and not to extend her life.

The surgeon and I talked it through on the phone. A broken hip is severely painful, and it hurts on every movement — every turn, every change, every time somebody makes her comfortable.

The question is not "will surgery fix her." The question is "which path hurts her less."

And the evidence supports treating it that way.

A study in JAMA Internal Medicine followed 3,083 nursing home residents with advanced dementia who sustained a hip fracture. Just under 85% had surgical repair; the rest were managed without surgery.

• Six-month mortality: 31.5% with surgery, 53.8% without.
• Median survival: 1.4 years with surgery, 0.4 years without.
• Documented pain among survivors: 29.0% with surgery, 30.9% without.
• Pressure ulcers: 11.2% with surgery, 19.0% without.
• Still walking at six months: 10.7% with surgery, 4.8% without.

Two conclusions come out of that table, and families deserve both.

Surgery does not give them back their walking. Ten percent versus five percent is not a recovery story. Anyone hoping for rehabilitation should hear that number before they consent, not after.

Surgery still means less pain and fewer pressure sores. That pressure ulcer figure is the concrete one — it is what "managed without surgery" actually looks like day to day. A person who hurts every time they are turned gets turned less, and skin breaks down.

The Palliative Care Network of Wisconsin puts it directly: even for patients who will never walk again, surgical repair can provide considerable pain relief. Non-operative management is not the gentle option. It is pain control, modified movement, and sometimes traction, for a fracture that hurts continuously.

What happened

A few days in the hospital, back to memory care, and about two weeks before hospice was in place again.

She died roughly two months later.

I have thought about whether the surgery was the right call, and I keep landing in the same place. She was already at stage seven and already bedbound before she fell. The operation was never going to add to her life, and it did not. It was about the two months she had, not about extending them.

The evidence agrees with the reasoning, which I did not know at the time and which would have helped. If you are being asked to consent to surgery for someone who will never walk again, you are not refusing to let them go. You are treating pain in a person who cannot ask you to.

If your person is at an earlier stage

Most families reading this are not at stage seven, and the questions are different.

For someone at stage five or six who might genuinely rehabilitate, the useful issues are these.

• "Non-weight-bearing for six weeks" is not a plan. It assumes a patient who can retain and follow an instruction. Say this to the rehab team on day one and ask what the protocol is for someone who cannot. If they do not have one, that tells you something about the facility.
• Ask about weight-bearing as tolerated. Surgeons increasingly favor fixation that allows immediate weight-bearing precisely because restriction is unenforceable in this population. It is a fair question to raise before the operation, not after.
• Therapy has to be adapted. Short sessions, the same therapist where possible, demonstration rather than verbal instruction, and the same time of day. Ask whether the facility has dementia-specific rehab experience, and treat a vague answer as an answer.
• Watch for delirium, and do not let it be dismissed. Sudden confusion after surgery is common, treatable, and frequently written off as "the dementia getting worse." It is a distinct medical event. See delirium or dementia — this is the single most useful companion piece to this one.
• Expect a step down, and measure it later. Some function does come back as delirium clears, over days to weeks. Some does not. Judging the new baseline in the first two weeks will frighten you unnecessarily; judging it at three months is more honest.
• Beware what "high fall risk" does next. The standard response is to keep the person seated, and the standard consequence is deconditioning, weight gain and further immobility. Ask specifically what mobility the plan includes, not just what restrictions it imposes.

What I would tell you

Decide about pain, get the hospice paperwork moving early, and do not let silence be read as comfort.

Those are the three things I would go back and hand myself, standing in my own kitchen on the phone to a surgeon I could not see.

None of them make it easier. They make it clearer, which is not the same thing but is what is available.