Open Notes and Compassionate Care

For me, the crux of the problem is this: Do Open Notes conflict with the ideal of compassionate care? 

When I was in practice I spent a great deal of time and effort tailoring what I said to each patient when reviewing my findings and presenting my recommendations. Which facts I shared and how I phrased them depended on:

• The patient's preferences for information
• The patient's communication style
• The patient's level of medical knowledge
• The patient's medical situation
• Our relationship over time 

I strived to communicate information in ways that promoted each patient's Healthy Survivorship -- even though back then I didn't call it that.

The acts of breaking news -- good or bad -- and making recommendations were dynamic processes that occurred in real time. I constantly adjusted what I was saying, depending on the patient's response to what was being said, as well as the patient's questions or comments.

In contrast, physicians notes are stripped of the filter of compassion -- words and actions that help patients hear and process medical information in healing ways.  

I see now that my initial reservations reflect my knee-jerk assumption that Open Notes couldn't possibly support compassionate care. Over the past week, as I've written this series of posts I've come to see that maybe I was wrong. I'll explain in my next post.

Comments

[Jeanne M. Hannah]

Wendy, what you write here today resonates so strongly with me. My eldest sister Kay died in 1990 after her recurrence of breast cancer metastasized and spread to her lungs and liver.

Kay did not have hospice care, although it would have been very helpful to her and likely would have given her a little longer to live.

The reason she did not have hospice care was because her doctors did not recommend (prescribe) it. Why not? Because Kay could not and would not admit that she was dying. In other words, as you write above, Kay preferred not to know bad news.

Therefore, her doctors chose not to tell her how bad her prognosis was. Instead, they informed her about a new experimental treatment for lung cancer and she was planning to go to Johns Hopkins for that as soon as she was able to travel. Of course that did not occur. I am sure that her doctors believed that they were being compassionate.

On the positive side, her doctors gave her hope. But it was false hope.

And, in building in her an unrealistic hope of survival, they took away something else: her ability to prepare herself and her children for her impending death--only weeks away.

To this day, her children ask me how I knew she was dying (from the other end of a telephone 1600 miles away) when they, at her bedside, did not know. They were 21 and 16. They heard with the ears of children who shared their mother's hope. I rushed to her bedside, but arrived too late to say goodbye.

Her children still occasionally ask me what I heard that they missed--why did I know what they did not know. This has provided us with many tearful conversations because they never got to say goodbye to their beloved mother.

"Two roads diverged in a wood, and I—I took the one less traveled by,
And that has made all the difference." Robert Frost

Choices are very hard to make. Clinicians obviously have difficult decisions to make as they balance a patient's desire to know or not to know against their decision about how much information to provide. Should a doctor factor into that decision the fact that there are minor children for whom the parent must make major decisions about custody and future needs?

Jeanne

[Wendy S. Harpham, M.D.]

Dear Jeanne,
I'm so sorry about your sister's illness and untimely death. Your personal story about your nieces and nephews highlights how what clinicians say to their patients with terminal disease also affects the patients' families forever after.
With hope, Wendy

[Pat O]

Wendy,

I suspect that most patients would not want to see their notes. People I know seem to trust their doctors to make the right decisions for them. And when they don't, they simply look for another doctor. So the point may turn out to be moot for a large portion of the patient population.

I, on the other hand, am one of those few who might want to view the notes from time to time.

My concern about Open Notes is that if doctors stress over how they "spin" a given observation or thought, they could ultimately blind both the patients and themselves to the facts as they see them. Or they may waste valuable time keeping two sets of notes--one open, the other private.

I figure a busy doctor may remember little or nothing about a given patient's case from visit to visit and must rely on those notes to refresh his/her memory quickly. If he/she has softened or sidestepped issues, the notes may become so fuzzy as to be useless to the doctor (and any others who may have to step in).

I think doctors should write whatever they need to write for themselves in order to bridge the various time and distraction gaps so they can give us the best care possible.

How we deal with those raw notes (if/when we choose to look at them) is simply a patient management matter.

Pat

[Jonnie Hickman]

Dr Wendy,

As a hospice nurse I too saw patients and their families that struggled with the acceptance of impending death. I had families who actually carried on like the patient was going to have the surgery or the next treatment when actually they only had a short time left. I watched families tell their loved ones exactly what the patient wanted to hear. "You need to eat so you will be strong enough for surgery." I struggled with this as it seemed to be a lie to the patient, but I never spoke up because I didn't know the patients entire story or how they processed life. I don't know if anyone's life was extended by not being aware of their real condition, but the families seemed to find comfort in the denial.

In my own fight, I find it difficult at times to hear what is really being said. The good news never seems good enough, the bad news just kind of slowly seeps into my head. I find it hard to express myself in a way to let others know exactly what is going on and I feel like a burden every time I ask someone to explain it over.

A few weeks ago, I was told by a radiologist who was going to do an ablation on my liver that I was too compromised for an open surgery, I would need to travel for a gamma knife procedure and that I would never qualify for a transplant with a stage 4 cancer. I have to recently move back home as I am no longer able to stay independant and care for myself, so when I walked in mom wanted to know what was said. I became very clinical and said exactly what I was told. My mom became very concerned and started crying. Me, I just went on like I hadn't even been to the doctor.

I didn't feel compassion from this doctor, but I didn't expect it. I wanted him to treat me as if I was the educated nurse and not the weepy 41 year old who wants to hang onto life and enjoy every breath. The one who wants to hold her granddaughter in November when she is born.

I don't know about anyone else who has a cancer or has always been the caregiver, but when I talk about my cancer, I don't always think of it as me. Every once and awhile I stop and I think Oh no, I am talking about me. I am dying. I have cancer. Almost like in some ways I am disconnected from the reality of it.

Thank you so much for continuing this site. Your sharing is very helpful to me. I enjoy being able to relate to the things you write and I feel like I am normal.