What Can Happen to Your Last Wishes May Not Be What You Planned

This is not how it was supposed to happen

Many of us these days are caring for aging family members. We’re having difficult conversations about end-of-life planning that includes a Living Trust, Power of Attorney and Advance Healthcare Directive. We’re making sure doctors understand our wishes and making decisions about nursing care and hospice.

This patient had done everything right

A New York Times article by Daniela Lamas, M.D., You’ve Detailed Your Last Wishes, but Doctors May Not See Them, resonates for many who are dealing with aging family members. In this case, the patient is an elderly man who had done everything right. He was brave enough to talk with his doctors about his cancer and knew that time was short. He had designated a healthcare proxy and signed all the right documents.

Yet here he was in the ER, surrounded by strangers, the intubation he didn’t want looming, his carefully recorded plans buried somewhere in his electronic record. He was pale, feverish, too confused to communicate, with no family around. The medical team wondered what the patient would have wanted.

One doctor surfaced a note from the patient’s oncologist

Just a few weeks before, the doctor and patient had talked about the realities—that there were no further therapies to slow the growth of his cancer. The patient had requested that when things got worse, there would be no breathing tubes or chest compressions. Only comfort and quiet. Yet the ER team, busy with X-rays, ultrasounds and medications, didn’t see the note. Thankfully, a resident found the notation and flew down to the ER to stop the Hail-Mary efforts and simply follow the patient’s wishes.

We have a system that doesn’t protect patients from getting care they don’t want

It would be easy to blame the oncologist for not sending the patient home with a legally binding directive documenting his end-of-life wishes, or the emergency doctors for not searching harder in the chart, but it’s not that simple. It’s not about individuals, but about a system that doesn’t sufficiently protect patients from getting care they do not want.

Increasingly, doctors are trained to have difficult conversations with patients about prognosis and care goals. Outside the hospital, people with serious illnesses are encouraged to discuss these issues with their friends and family. But what happens after those difficult conversations can be a mystery.

Don’t assume you can tell your doctor your wishes and it will enough

It’s tempting to assume that if you tell one doctor your end-of-life wishes, that’s enough. That what you want will be clearly documented and retrieved when needed, and the record will follow you wherever you go. Yet this critical information is sometimes not documented even when conversations do happen, or they’re scattered through our electronic records, only intermittently accessible, with few standards or best practices to guide us.

Searching electronic records for notes: A common dilemma

“As a doctor working in the ICU I knew firsthand the frustrations of searching the electronic record for notes and scanned documents and had no idea how common this problem was.

• I heard stories of patients who had been transferred to nursing facilities without their advance directives and returned to the hospital intubated when that was explicitly not what they wanted.
• Other patients had grown ill on vacation, ending up in a hospital they’d never been to, with an entirely different electronic medical record. No one could access prior documentation.
• Others described situations in which last-minute “saves” through extreme diligence or chance had led to good outcomes.”

Few existing regulations on advance care planning

The Centers for Medicare and Medicaid Service are relatively silent on advance-care planning. Recently, a handful of startups has stepped in. Software and clever patient apps that work outside the electronic record are working to help systems communicate with each other.

Creating standards for sharing across all electronic records, everywhere

What could really make a meaningful difference is standards for sharing, or “interoperability” across all electronic records that would benefit every patient, everywhere. At the very least, all related advance-care planning documentation should be in one place in the medical record and accessible with one simple click of the mouse. Beyond that, maybe all health systems could require identification of a health-care proxy for all patients, so we would know who should make decisions if the patient can’t.

The medical industry is playing catch-up

This story is a good example of the medical industry trying to catch up. While this patient never got strong enough to make it back home, his family arrived, and he was quiet and comfortable in the end. Just as he had wanted.

Is it time to create or update your Living Trust?

Our comprehensive Living Trust package includes a Power of Attorney and Advance Healthcare Directive. Contact us at one of our three Bay Area offices to schedule an appointment to create or update your Trust. We’re helpful, compassionate and affordable.