Code discussions (this is another class paper for Narrative medicine)

 Advance Directives (ADs) delineate an individual’s health care wishes and include a Living Will (which documents preferences for CPR, mechanical ventilation, artificial feeding) and Durable Power of Attorney for Health Care. Doing a comprehensive AD discussion properly takes time and should be intermittently re-discussed.

Many individuals, unfortunately, have never had these discussions. Only about 20% of adults have ADs; the majority do not discuss goals of care (GOC) or have end-of-life discussions until they are hospitalized with a serious illness (1).

Patients with ADs have fewer hospitalizations in their last months of life and are more likely to receive care that aligns with their wishes.

Providers, in the outpatient setting, have often failed to initiate these discussions for multiple reasons.

Code status-the decision to use cardiopulmonary resuscitation (CPR)- is just one part of ADs, but ascends to one of the highest priorities when an older adult or a patient with an acute or chronic life-threatening illness presents to the ED.

In an ED study on 187 high-risk patients, or their surrogate decision makers, 84% noted to never having previously discussed code status and 83% were unaware of their current code status (2).

Therefore, unfortunately, many code status discussions take place in an ED.

Code status discussions are challenging, even for oncologists (3).

Physicians’ confidence regarding code status discussions is low compared with their confidence regarding other medical discussions (4).

It’s often a resident physician who is given the task of the code status discussion prior to admission.

In a study, 68% of residents surveyed noted not receiving any code status training during medical school and only 13% felt competent to discuss code status on their first day of residency (5). 75% noted to no formal training during residency and only 39% noted to ever having had a code status discussion observed/critiqued by a supervising physician (5).

Individuals, family members and caregivers have difficulty with code status discussions for multiple reasons (fear, guilt, distrust of the medical system, spiritual beliefs, etc.) as well misinformation regarding the success of CPR, often due to what has been depicted on television shows.

A review done in 1996 on 96 episodes of ER, Chicago Hope and Rescue 911 showed 75% were successfully resuscitated with CPR and 67% of those were discharged from the hospital (6). A more recent (2020-2011) review of 91 episodes of Gray’s Anatomy and House showed a 69.6% success rate of CPR with 71.9% of those being discharged from the hospital (7).

Actual success rate of in-hospital CPR is approximately 44% and only about 17% are ultimately still alive to be discharged from the hospital (8).

The survival-to-hospital discharge is less than 5% for older adults and those with serious illnesses (9).

Many who survive have significant neurological and functional impairments.

A standard code status question, often asked in a busy ED setting has been:

“If your heart stops, do you want us to restart it?”

It’s been equated to a mechanic asking a customer, “If your car stalls, do you want us to jumpstart the engine (10)?”

Most would say yes to questions such as this, especially in a hospital (10).

The goal of a code status discussion is to support patient self-determination and, hopefully, avoid non-beneficial interventions at the end of life (11).

The Palliative Care Network, Medical College of Wisconsin (12), offers excellent suggestions on code status discussions. Their Fast Facts encompass many Narrative-Based Medicine (NBM) principles (open ended questions, listening to the patient’s story, responding, education, etc.). After review, the following abbreviated approach could be helpful:

First state, “I’d like to talk with you about a health care choice that I review with all patients.”

And then, three questions that could potentially improve the quality of a code status discussion are:

1.      What do you understand about your current health situation?”

Transitioning to…

2.      “What are your health care goals for the future?”

And finally…

3.      “If you should die despite all our efforts, or in the event of your death, do you want heroic measures to try and bring you back?”

Using the words die or death helps to clarify the initiation of CPR is a choice that tries to reverse death (13).

The discussion can then become more specific, including actual statistics, if/when asked and/or if/when appropriate.

“Deciding to not undergo CPR does not mean that other interventions (medications, antibiotics, fluids, etc.) to treat your current condition are stopped.”

“Roughly, only about 1 out of every 6 (17%) patients who undergo in-hospital CPR survive long enough to be discharged from the hospital.”

Or for an older adult with significant co-morbidities:

“Only approximately 1 out of every 20 (5%) older adults, with medical conditions such as yours, who undergo in-hospital CPR will survive long enough to be discharged from the hospital.”

Educational efforts must continue for all health care providers and the public to discuss ADs in a non-ED setting.

Television shows are sure to continue to depict favorable outcomes to CPR.

It’s currently “Jimmy V Week” in the United States and the foundations (the V Foundation) motto is “Don’t give up, don’t ever give up.”

Therefore, discussions often need to be repeated over time as GOC change (due to changes in one’s medical condition) as well as if/when the outcome information reviewed is accepted to a greater degree.

The goal of this paper was to offer an approach for code status discussions, even in a chaotic ED setting, utilizing 3 questions that incorporate some NBM principles.

Hopefully confidence in these discussions will increase so that, ultimately, the care that is being rendered, especially to older adults with advanced chronic illnesses, will more closely align with their wishes.

References:

1.      Ram P, Horn B, Siegel A. An Internal Medicine Residents’ Perspective on End-of-life Discussions. Indian J Palliative Care. 2018, Jul-Sep: 24 (3): 388-389.

2.      Sanghvi S, et al. Decoding Code status: Assessing End of Life Care Knowledge in High-Risk Populations. The Journal of Emergency Medicine, Vol. 76, September 2025: 144.

3.      Taylor R, Gustin J, Wells-DiGregorio S. Improving Do-Not-Resuscitate Discussions: A Framework for Physicians. The Journal of Supportive Oncology. Vol. 8, No. 1, Jan/Feb 2010.

4.      Sulmasy D, Sood J, Ury W. Physicians’ confidence in discussing do not resuscitate orders with patients and surrogates. Journal of medical Ethics. Vol. 34, No. 2, Feb. 2008: 96-101.

5.      Gaffney s, Winzelberg G. When See One, Do One, Teach One Isn’t Enough: Assessing Internal Medicine Residents’ Code Status Communication Training Needs. JPSM, Vol. 59, Issue 2, Feb. 2020.

6.      Diem S, Lantos J, Tulsky J. Cardiopulmonary resuscitation on Television. Miracles and misinformation. NEJM, 1996 Jun 13: 334(24): 1578-82.

7.      Portanova J, et al. It isn’t like this on TV: Revisiting CPR survival rates depicted on popular TV shows. Resuscitation. 2015 Nov: 96: 148-50.

8.      Palliative Care Network of Wisconsin. Fast Fact #179.

9.      Palliative Care Network of Wisconsin. Fast Fact #024.

10.  Ulin L. Why so many patients are confused about CPR and do-not-resuscitate orders. First Opinion. Sept. 11, 2024.

11.  Yuen, J, Reid M, Fetters M. Hospital do-Not-Resuscitate Orders: Why They Have Failed and How to Fix Them. J Gen Intern Med. 2011 Feb 1; 26 (7): 791-797.

12.  https://palliativecarenetwork.com

13.  Palliative Care Network of Wisconsin. Fast Fact #023.

Thinking back...

Stephen

Steven was 48 years old. Just a couple of years older than me. He had chronic hepatitis C, Crohn’s disease, protein-calorie undernutrition, chronic nonmalignant pain, panic attacks, depression and painful peripheral neuropathy. Most recently he had an emergency cholecystectomy that was complicated by rhabdomyolysis and acute renal failure.

He had previously “fired” another doctor in my office. He had also been fired or been asked to go elsewhere by many colleagues in other offices.

He “choose” me about three years ago after we had a good encounter on a day his previous doctor was on vacation and I was able to spend a good deal of time with him because I had had some cancellations. Also, I was probably more relaxed appearing due to thinking that I wouldn’t have to follow him long term once his doctor returned from vacation. I was mistaken.

His mother called the next day to see if I would agree to take him on as a patient. I started my new acting job the minute I said, “oh sure, I would be happy to be your sons’ doctor.” I really wanted to say, “no, I don’t want to try and take care of your demanding, complaining, chronically ill son who has already alienated and terminated relationships with nearly every other primary care and specialist in town,” but didn’t.

Most mornings, it seemed, I started my day with a note to call him. I saw him frequently for scheduled visits. He would also just show up unannounced on other days and demand to speak with me. The front desk staff hated to deal with him due to his angry tone, and my nurse would cringe at just the sound of hearing his name, as I would.

He was very intelligent. Unfortunately, he was a truly miserable person to be around. He would spend hours on the internet researching traditional and alternative treatments for his different medical diagnoses. Most doctors found him “impossible.” Whenever I referred him to a specialist, I hoped for a positive outcome. Shortly thereafter, however, I would get either a letter or a call from the consultant letting me know that follow-up with them wasn’t necessary. One such note from a GI specialist:

     “The patient is talkative and argumentative. Through the internet, he thinks he knows everything there is to know about Crohn’s disease. I offered him a colonoscopy to re-evaluate the status of his disease and he declines. He should be sent for psychiatric evaluation and treatment.”

When I saw yet another note to call his home, the “G” rated version of my thoughts was “gosh darn it, this guy is driving me crazy!” I had just talked to him yesterday for a long time. I had also spent an hour with him in the office two days ago.

I called. His mother answered. She let me know that Stephen had died in his sleep. His mother graciously thanked me for everything I had done, and we had a wonderful talk about his life. I don’t think she realized that I had, at times, daydreamed and looked forward to the day that I wouldn’t be burdened by having him as a patient.

Stephen’s dead. He can no longer bother me, but I think about him often. I drive past the apartment where he lived with his mother on the way to my office.

I’m ashamed to have harbored such ill feelings while he was alive, but at the same time, I’m proud to have had a long-term relationship with him when so many others with health care providers had failed. In retrospect, the time I spent with him represented only a small fraction of my practice, or my life, for that matter.

I couldn’t let him know how I really felt. In my private life I can choose those with whom I associate. As a doctor, I can’t or shouldn’t choose, especially those who have nowhere else to turn. Appearing to care and trying to remain his advocate was the least that I could do for him.

Difficult patients are usually not only chronically ill but may often be demanding with poor communication skills. They are often just mad at the world.

When another Stephen chooses me to be his doctor, I hope I will step up to the plate again.

Although caring for him seemed like a very long gig at the time, it really wasn’t.

Cure sometimes, treat often, comfort always

 I'm in the midst of getting a foundational certificate in Narrative Medicine and haven't done a blog entry for a while. Here was my first paper for the class:

“Cure sometimes, treat often, comfort always,” were sentiments, expressed by Dr. Edmund Livingston Trudeau, in the late 19^th century.

But “when sociologists studied medicine in the 1960s, they observed physicians to practice with detached concern (1).”

And historically, physicians-in-training have been taught: “Don’t get too close to patients.” The thinking was that keeping a safe distance from patients emotionally would reduce the risk of getting burned out (2).

Although getting to know the whole patient was emphasized during residency and fellowship training, admittedly, once practicing full-time, I would navigate as quickly as possible through encounters, trying to be as productive as the other physicians in the group.

But I couldn’t envision this as my modus operandi for years to come and, occasionally, daydreamed about walking away from medicine.

I had only been out of medical school for about ten years.

Fortunately, a quote in 1996, by Dr. George S. Poehlman, struck a chord: “Always ask your patients something that is totally non-medical before closing out the patient encounter. You will become an amateur anthropologist on whom stories are bestowed.”

I started to do just that and would briefly document, in a journal, a story from an encounter each day that was, in my opinion, unique, uplifting, or humorous.

It didn’t add a lot of time to encounters, it improved my interactions with most patients and their families, and I had a renewed appreciation for my career.

Occasionally, I would even cognitively reframe a less-than-optimal encounter by teasing out a portion that still highlighted their humanity.

Over time, I added stories of personal life events, including health related issues that affected myself or family members.

“In Frank’s book, The Wounded Storyteller, there is a sentence…, “The ill person who turns illness into story transforms fate into experience; the disease that sets the body apart from others becomes, in the story, the common bond of suffering that joins bodies in their shared vulnerability (3).”

I’ve encouraged my patients, my family, and other health care providers, to journal and tell their stories, if applicable.

“Other people are going to find healing in your wounds. Your greatest life messages and your most effective ministry will come out of your deepest hurts.”-Rich Warren

Not everyone is a writer, as Arthur Frank has noted: “So, having a lot more to say, I did what I do, which is to write. Had I been a painter or sculptor, a musician, or a dramatist, I would have said what I had to say in that idiom (4).”

Storytelling, “in whichever medium they have resources…may communalize suffering…generates communities of vicariously shared experience…is a way out of isolation and a way into alliances. Stories turn loneliness into affiliation (4).”

That’s a wonderful consequence.

“Through the narrative process of reflection and self-examination, both physicians and patients can achieve more accurate understanding of all the sequelae of illness, equipping them to weather its tides (1).”

I completely agree.

I suspect Dr. Trudeau would as well.

References:

1.     Charon, R. (2001). Narrative Medicine – A Model for Empathy, Reflection, Profession and Trust. JAMA, 286(15), 1897–1902.

2.     Trzeciak, S., Mazzarelli, A. Compassionomics-The Revolutionary Scientific Evidence That Caring Makes A Difference. 2019. ISBN: 978-1622181063.

3.     Weingarten, Kaethe (2001). Making sense of illness narratives: Braiding theory, practice and the embodied life. Working with the Stories of Women’s Lives. Dulwich Centre Publications.

4.  Frank, Arthur W. (2017). An illness of one’s own: Memoir as art form and research as witness. Cogent Arts and Humanities. Volume 4, Issue 1.