Learning from Every Patient

A Newsletter for Frontline Healthcare Team Members and Quality Improvement Professionals

Real cases. Practical improvements. Stronger voices at the bedside.

From HB Healthcare Safety® and Influence Ignited!

Edited by Jeanne M. Huddleston, MD, MS

Why a Newsletter and Why Now?

BLUF: This newsletter was created to spread meaningful lessons learned across organizations’ multidisciplinary frontline teams and quality improvement professionals. The goal is to spread the good that others achieve—and stop repeating what we already know does not work.

There is a HUGE problem with not sharing the good, the bad, and the ugly from quality improvement initiatives. We end up with pockets of excellence, even within the same organization, and we keep repeating the same darn projects, somehow surprised when they fail again.

For the last 10 years, I have preached the importance of “Intentional Knowledge Dissemination” to all SLS Collaborative members. They all adopted a more robust learning capability to identify failures in their healthcare delivery systems and which patients are affected. Most sites improved their mortality rates and end-of-life care, while some still struggle. Some tackled delays in treatment (antibiotics, anticoagulation, specialty consultations, etc.), which remain one of the toughest areas for improvement due to their broad, multidisciplinary nature.

So what have I been doing to ease the moral distress of knowing about high-risk opportunities for improvement that are still not fixed—beyond annual benchmarking reports, monthly grand rounds–style Collaborative Conversations, invited presentations, and an academic publication? A lot of worrying, but nothing substantial enough to match the size of the problem.

Hence the need for a communication vehicle to get the word out about the meaningful work people are doing to save lives and decrease suffering—for patients and for each other.

In Memory of My Dear Friend Rita

BLUF: What happens to patients when they do not have an advocate with medical knowledge who can fill in the cracks?

This is a hard story to write because there are really two stories here—hers and mine. I will share hers as objectively as I can and mine as authentically as I can.

Rita’s Story – Abandoned

Rita died about six weeks ago, between Christmas and New Year’s Day, from widely metastatic ovarian carcinoma. She had exhausted standard chemotherapy and then waited nearly two months to learn whether her tissue matched any of several research protocols, while her rib cage, arm, and left hip pain worsened so much that she had to stop working. She saw a couple of advanced allied health providers in primary care at her oncology team’s request; per her report, no one explained the cause of her pain, and she declined opioids because she believed it “couldn’t be that serious” and wanted to stay clear-headed as a widow caring for her adult special needs, fully dependent son.

By Thanksgiving, the pain was unrelenting. She could not get in to see her primary, and the only local oncologist had left the organization; no one would prescribe opioids without an in-person visit, and the first available palliative care appointment was more than three weeks away. She called me in distress and asked me to see her. That is where my story begins.

Jeanne’s Story – The Continued Fall Through the Cracks

I agreed to see her in an official capacity. She shuffled in with a cane—this woman who used to outpace me in the hallway—clearly declining and in tremendous discomfort; she was dying and needed pain management and hospice, not another wait. The palliative care visit was simply too far away, and I had recently learned that anyone can initiate a hospice referral, including the patient herself, by directly contacting a hospice agency. So that is what we did. I started her on a low-dose fentanyl patch with breakthrough oxycodone, and the hospice team took it from there.

Rita was meticulous by nature. She called several times a day when she did not understand exactly which medication was for what, and I stopped by a few evenings before Christmas while her family was out of town. Her son, who loved her fiercely, became overwhelmed and was not equipped to be her primary caregiver; when her symptoms frightened him or she needed a diaper change, he called the EMTs. On Christmas Day, I was out of town, and he was managing alone. When she fell, he again called the EMTs, and later that day her sister called me—knowing Rita did not want a nursing home and that there was no realistic respite option on Christmas—asking what to do. I recommended going to the ED for admission until a safe end-of-life plan could be arranged.

The hospital moved quickly. She was discharged to a nursing home in a neighboring community for respite care, where she died within two days—about 36 of those hours without pain medication—and I never saw her again.

Rita’s Story – The End

On paper, a skilled nursing facility with good nursing care sounded ideal: her son could visit and then step out for a break without worrying about her safety. But at the time of hospital discharge, the hospice team had already destroyed her medications according to policy, and the hospital team did not realize that, for hospice patients, they needed to ensure that filled prescriptions for controlled substances actually accompanied her to the facility. Rita suffered with uncontrolled pain and respiratory distress for nearly 36 hours, and her family suffered alongside her, until one staff member remembered a “COVID cart” with the medications her hospital physician had prescribed; they were able to provide temporary comfort until the correct hospice meds arrived.

Rita died in the middle of the night, sleeping comfortably—alone, but comfortable.

The Loved-One Lens

First, I believe no one involved did anything wrong or intended harm; everyone was working to the best of their ability within a fragmented system that still failed her. Even when we do our best, the patient and family experience can be far from what we would want for our own loved ones.

If Rita were your sister or mother, what would you have wanted to be better for her? I am genuinely curious: what opportunities for improvement do you see in this case, and what might you do differently next time you care for patients with advanced oncologic disease—whether they are on the hospital ward, in hospice, or in a nursing home? Reply to this note and let me know what you think.

And please, reply with a story you are willing to share. I would love to hear from you, and I suspect that Rita—and the teams who cared for her—are not the only ones who have experienced something like this.

About this Newsletter

Learning From Every Patient is a case-based patient safety and quality newsletter for frontline clinicians and healthcare quality improvement professionals who want to stop preventable harm. Each issue features rotating content, including real cases, expert commentary, a short “Loved One Lens” reflection, a brief look at “what worked” in successful improvement efforts, tips and tricks for quality improvement and patient safety projects, and quick scans of relevant new evidence. Published by HB Healthcare Safety, SBC, and powered by Influence Ignited!, the newsletter is edited by Jeanne M. Huddleston, MD, MS, and is designed to turn everyday stories and process defects into practical, actionable lessons you can use on your next shift.

Editor: Jeanne M Huddleston, MD, MS

Founder, Influence Ignited, LLC

Co-Founder, HB Healthcare Safety, SBC

Professor of Medicine, Mayo Clinic College of Medicine

huddleston@hbhealthcaresafety.org OR huddleston@influenceignited.org