Failing Mrs. Jones: How a group of doctors (including me) failed a dying patient

Wednesday, 14 Aug 2013 01:44

About Dr. Monica Williams-Murphy (120 Posts)

Dr. Monica Williams-Murphy is a Board Certified Emergency Medicine Physician, who practices in one of the largest emergency departments in the United States at Huntsville Hospital. Through her writing and speaking, she is devoted to transforming the end of life into a time of peace, closure and healing. Media Page

Standing up from my computer terminal to go see another patient, I caught a glimpse of a small, spindly frail woman being rolled by paramedics into one of my shock and trauma rooms.

Very calmly, I remarked, “That woman is dying.”

The medical student who was rotating with me was unnerved that I would make such a pronouncement out of a mere casual observance, “Oh my goodness! How can you just say that?”

“Well, I just know,” I said, and motioned her over to see the patient with me. The paramedics identified her as ‘Mrs. Jones’ and quickly gave me a report while she was still on their stretcher: 78 year old female, advanced colon cancer, not eating or drinking for 3 days, barely responsive, sent in after home health nurse called the cancer doctors about her condition. Patient is on active chemotherapy.  Family had no advance directives.”

Visibly uncomfortable with my comfort, the medical student stood back as I leaned in close to Mrs. Jones and held her hand. She was really a pitiful site—80ish pounds, gray-hued skin, swollen legs and breathing rapidly. The sound of bubbles and mucous in her airway muffled her voice for the only clear words that I would ever hear from her, “I’m dying,” she said.

“Yes, you seem to be,” I said in my softest, gentlest voice. “What can I get for you? Are you in any pain?” I asked. To each question, she shook her head “No.” But she could not communicate anything beyond this, so I could not readily gather her wishes.

I ordered oxygen, labs and IV access while I tried to figure out what to do next—would this be aggressive intervention, comfort care or somewhere in between? I wasn’t sure because she was clearly not on hospice, there were no advance directives, her husband wasn’t there yet, and there were no records of her in our computer to help me sort out my next urgent medical course of care for her. But, I did have the name of her oncologist, so I called him up.

“Hey, Jack (we are very collegial at my hospital), I’m taking care of Mrs. Jones here in the ER and I don’t have any records on her to understand the big picture of her care goals and plans.”

I continued, “I have to tell you, that she is in really bad shape- frankly, she appears to be actively dying and I didn’t know if you had discussed comfort care options with her before.”

Without pause, he responded, “Well, I haven’t discussed Advance Directives with her and her husband; but I really don’t think she is ready for comfort care only just yet. She is has been coming to the office all week for fluids and responded well to a round of chemo last week.”

I about fell out of my chair.

This was the first mega-failure for Mrs. Jones.

How could someone have advanced cancer and never have had their doctor discuss advance care planning with them? Isn’t this a form of “moral medical malpractice”? Or, was this an extreme case of medical paternalism at its worst?

Even worse, this oncologist had been seeing her frequently. Did he not see “where” she was on the “map” of her illness? Was he unable to see the forest for the trees? I mean, I looked across the hall and could tell that Mrs. Jones was dying, even before she told me herself…didn’t he even have a hint of the same gestalt?

So, that was mega-fail number one, from an oncologist: failure to help Mrs. Jones and her family plan and prepare.

Failure number two came from me.

When her husband arrived, I sat him down in the closest quiet space I could find and after a short “ease-in” period, I stated the bottom line: “She told me herself that she is dying, and I believe her.”

I waited for his response.

He said, “I have seen a lot of people die and I was thinking that she is dying. But at the same time, I really want to get her hydrated and try to get her nutritional status up.”

“Mr. Jones,” I replied, “I really think this is it. I think she is dying no matter what we do at this point. If she was my mother, I would only choose medications to make her comfortable.”

When I asked him what he thought Mrs. Jones would want if she could communicate it (substituted judgment), he said, “No CPR or breathing machine, but she would want to try everything else.”

So, here is where I failed; I entered a DNR order and let my conversation stop there. I let Mr. Jones’ preconceived hope for recovery, planted by the oncologist’s silence, to go unchallenged further. This led to Mrs. Jones going to the ICU for aggressive IV fluid and pressors (chemical blood pressure support agents). The family, limited by visiting hours and falsely expecting a turn-around with aggressive IV therapy, went home for a break.

However, instead of “turning around,” Mrs. Jones became unconscious soon after they left.

She was going to die, as I had known from the start.  But now she was alone, except for the ICU nurse and the pulmonologist who saw her next—the doctor who unbeknownst to himself, provided the final failure for Mrs. Jones.

The pulmonologist at least recognized that Mrs. Jones was dying and appropriately honored her DNR order, but wrote these words in her chart “There is nothing more I can do for her…family called to come in.”

How did we arrive at a place where the doctor doesn’t think there is anything to do for the actively dying patient? Do we think that if we cannot order an IV med or put in a central line that there is nothing for us to do? Doctors still hold a priestly role in society whether we accept and fulfill this role or not.  It is high time that we take this mantle back upon us and be hell-bent on making sure that our dying patients are having “good deaths,” with as much devotion as we give to “saving” our patients and attempting to give them a “good life.”

So, in the end, Mrs. Jones died just shortly after she arrived to the ICU. She knew that she was dying and I knew that she was dying whether anyone else accepted it or not. Regrettably, we (her doctors) failed to prepare her for that moment—and in that moment, we failed to care for her best—we failed to give her the best death possible. I hope, where ever Mrs. Jones is, that she will forgive us.

Monica Williams-Murphy, MD

As always names and some medical details are changed to protect the privacy of the patient. Date of publication has no relevance to the date of the actual patient encounter

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26 thoughts on “Failing Mrs. Jones: How a group of doctors (including me) failed a dying patient

    1. Anonymous

      Great article and the greatest thing that come out of this is the knowledge you gained from this experience. The last failure which is no fault of you is the lack of a integrated or universal medical record system nationally to be able to make an informed decision when treating a patient.

  1. Stan Dura

    Hey Monica! I’ve lost 3 sisters this past year, all to cancer. One refused to see a doctor, but the other two had great oncologists and seemed to be pretty pleased with the care from various other medical staff they interacted with. What you say resonates with me, though, more from the family and pediatric side of things. The doctors and nurse practitioners who take the time and actively listen, get to know us, appropriately trust and challenge our informed and not-so-informed self diagnoses, etc. are a different breed, and leave us having more faith in them, the facility, and even ourselves at times. Thanks for carrying the mantle, and for making sure you’re not the only one to do so. :-)

  2. Lori

    Thank you Monica for your dedication to such a controversial subject. It’s always been my thought to provide quality of life over quantity. Families have difficult decisions to make in stressful times. Definately there should be better communication between patients, families and caregivers of the wishes of the patient.

  3. Pingback: Failing Mrs. Jones: How a group of doctors (including me) failed a dying patient | It’s OK to Die | All Things Palliative - Article Feed

  4. Rea

    Another excellent article from you, Dr. Murphy. Agree with Virginia Seno = Beautiful! Said with all the power and courage of someone who lives in the eye of the storm. Yours is the voice that matters. Violates the physicians’ unwritten code of ethics: never never ever speak publicly against another physician, esp. not yourself. That is, it takes guts to look inward. Most people can’t/won’t do it. You can. Keep talking. Your audience is growing, just as you intend. Keep writing so that we can have the pleasure of reading and thinking and helping you to take action!

  5. Alex

    Too bad that she had to go to the ICU, and family couldn’t stay with her. I still remember a lady I saw. She was an older lady who came in unresponsive from the local retirement home. Unresponsive, so of course I had to intubate. The CT showed a large intracerebral bleed. Not a surgical candidate, so couldn’t transfer. Family wanted DNR. Local MD was willing to admit, but family couldn’t be with her in ICU. So I did a “terminal wean” in the ED, just going back in to see her and family every 15 min or so. (Just so glad an ICU attending in residency taught us how to do terminal weans). Family got to stay with her, and were very happy. The nurses wrote me up for spending too much time in the room…..

  6. Julie Saeger Nierenberg

    Powerful article, Monica. Thank you for writing and sharing it. Our orientation can change toward quality versus quantity, I believe, and hopefully will sooner than later. Who among us would not prefer to die a good death after living a good life? Let’s prepare ourselves and our significant others–including and especially the doctors who care for us–to embrace that stage of our lives according to our well planned and chosen wishes. It’s the final chapter, for Heaven’s sake (pun intended)! Let’s write and rewrite it to be the very best it can be, especially for the protagonist.

  7. Rachel

    I also believe there is not enough education done on dying. I believe we need to turn these conversations around from doing all we can medically to keep a person alive to a conversation about what we can do to surround the dying person with love and support. We act like we’re born to live forever, and we aren’t. I’m on board that something needs to change. After walking through 13 years of caregiving with my mother and being with her when she died, something needs to change.

  8. Michael Kiella

    Mirabile dictum.

    Thank you Monica.

    ….our last life experiences should indeed proceed as part of a continuation: an “unencumbered life”… not life’s final burden.

  9. T R Patterson

    Great piece. I think you go too far in feeling that you had failed abysmally. The oncologist had set all of us up to fail, and stopping the treatment train cannot just happen in an instant in these scenarios when no one has addressed it before. I have been ushered out of many patient rooms because I insisted that spouse of family talk about end of life care- and yes, they die in ICU, despite us. The medical world for the most part still regards death, and discussions of death as the enemy, which is just sad. DO keep up the good work I am not as eloquent in prose as you, but support you greatly.
    Rey Patterson

  10. Anne Dugan

    Wonderful article!! Too bad every physician doesn’t have to read it!! I am the Inpatient Coordinator at an Inpatient Hospice Facility and I see this way too often…..I walk into a hospital room to evaluate the patient for our facility and the patient is actively dying….do the other clinicians just not see it or do they just not know what to say to the family?

  11. Mark Knister

    It takes courage to write what you did, thank you! As a chaplain, it is heartbreaking to try to “convince” a family that a patient is dying when the Dr. does not have the courage to tell them the truth. Just saying, “I think it’s time for hospice,” is not enough. (Nine times out of ten they allow the patient/family to make a followup appointment!! For what??) We have Dr. ride-a-longs; it is quite eye opening for them in the real world.

  12. Sandi Hebley

    I agree with you , Mark. Maybe someday discussions of end-of-life and ride-alongs with hospice folks will be a required part of medical training. EPEC has been a good start, but we all need to support expanding it.

  13. Carol J. Eblen

    If physicians and clinics had been placed under the provisions of the 1991 Patient Self Determination Act, they would have a legal obligation to talk to their elderly patients with diseases that could end their lives about the other legal standard of care —–Hospice and Palliative Care.

    Unfortunately, they weren’t because the AMA and other interests lobbied against any legal obligation to get informed consent for one standard of care, i.e. curative care, as opposed to the other standard of care, palliative and hospice care. There have been two distinct legal standards of care reimbursed under Medicare protocols. since the 1991 Law was passed. Patients can’t be on Medicare and Hospice at the same time. It is one or the other.

    Physicians have no legal obligation to tell the truth to their dying patients and they don’t!

    Why haven’t physicians been put under a mandate to SEEK INFORMED CONSENT for Curative Care as opposed to Palliative Care/transition to Hospice from all of their Medicare/Medicaid patients with co-morbidities and late-stage disease? SHOULD WE FOLLOW THE $$$$$$.

    The public policy goal of preventing dying elderly patients from dying in ICUs at great expense to the government and the private insurers was undercut when physicians and clinics were not placed under the provisions of the 1991 PSDA. Overtreatment of the elderly (for profit?) has continued to be a problem for the government and the private insurers and NOW physicians are using DNR Status often to limit life-saving and life-extending treatments that they KNOW will not be reimbursed under CMS protocols developed over the last ten years.

  14. Marsha Farrell

    As I read your story, I saw something very powerful that you DID for Mrs. Jones.
    Mrs. Jones acknowledged and voiced that there was “an elephant” in the room… the fact that she was dying.
    She pointed to the elephant and you respectfully acknowledged it. Up until that time, Mrs. Jones was isolated
    by her oncologist and family because they would not speak with her about the elephant.
    What an unfortunate waste of time not to speak about the most important things in our lives as death approaches.
    Ira Byock’s “Four Things That Matter Most” comes to my mind: 1) Please forgive me. 2) I forgive you. 3) Thank you and
    4) I Love you. Then the dying person can easily say “Good bye” and slip out of his/her physical body.

  15. Jim Sinclair

    I am an Oncologist and Palliative Care physician. I suspect I had a few patients like Mrs. Jones early in my career. I have done a better job but have a way to go before all of my patients have timely goals of care discussions. Sadly I fear the intitial consult just isn’t the right time. I have had a few patients “look good” in my office only to look terrible in the ED a few hours later. I will not cast my stone at the Oncologist in this story until I have completely corrected my behavior.

  16. Laura Macias

    Thank you, Dr. Williams-Murphy. I appreciate the self-reflection and candor you have shared…it takes a strong person to examine themselves so closely.
    I have been working in Hospice and Palliative Care for 8 years, and for the past 3 years have been managing a nurse-led, outpatient palliative care service. I have lost count of the number of times I have recognized someone to be dying, yet no one but myself was willing or able to state that fact out loud. I cannot tell you how often our staff is the first to aknowledge what the patient themselves understand, but what no one else was willing to discuss. I do not know of many other professions that can be this dishonest and still be held in such high esteem (except maybe lawyers!)
    I get it. Doctors are drawn to medicine because they want to save people, and many of them see death as an enemy to be fought at any cost. I am waiting for the day that medical schools start to talk about death for what it is–a normal part of the life cycle, that can be (somewhat) predictable.

  17. Dhont Kathleen

    Great article, we all have to learn how we can give as much as possible comfort and warmth to patients who are dying and there family;

  18. Hospice-Palliative RN

    We all know our society is death-denying; this week I have seen two patients, both elderly, who were treated, literally, within “an inch of their lives”; their oncologists never discussed their actual life expectancy with them. Once we acknowledged their status, educated their families, both felt comfortable enough to slip away, although unfortunately in hospital. Oncologists care deeply for their patients, but are afraid of “stealing hope”; patients tell us that their desire is for their providers to be realistic and to manage their burdensome symptoms. We can honor the lives of our patients by introducing palliative care at the time of life-limiting diagnosis. Face it: if a patient has had cancer before, and is now facing a recurrence, it will likely not be cured. This is the time to be honest, to ask what’s most important, to LISTEN to the answers. We in the white coats are the people they look to for guidance. We owe it to them to be compassionate, and honest; to afford them quality time with their loved ones.

  19. Ha

    I have been involved in the hospice community for 30 years. Sadly. this is the same conversation that was taking place all those years ago. However, I do want to say, from my experiences that I believe we have and are making progress. Thanks to the pioneers – Saunders, Kubler Ross, Byock, Peralta – I believe the medical community is now beginning to understand some of the special issues surrounding the body’s decline into its final moments. Many doctors are now beginning to write “Allow a natural death” orders rather than DNR. However, in practice, what most of the practitioners want is someone else to “have the conversation.” Many times this includes both nurses and doctors. No one has time to sit down with the family, describe in detail the trajectory of the final illness the body is experiencing. Extracting a plan from an anxious patient, and a worn out family struggling with the question of “Did we do enough?” can take precious minutes (hours?) out of an already overcrowded day. All of us who “get it” just need to keep teaching – (Preaching?). Our message has been and is changing the world. Keep up the good work, Monica, and thank you for the posting.

  20. Sue Wintz

    Great article! I would suggest that a professional chaplain should have been paged and brought into the situation the moment that Mrs. Jones entered the emergency room. As a member of the professional team, the chaplain could have not only been part of the initial conversation with the patient and later her husband but also with the extended family that arrived. By completing a spiritual assessment, the chaplain would have been able to identify the beliefs and values of the patient and family and gently assisted in the conversation about goals of care for the patient as well as educating the family. While the overall hoped-for outcome would be to provide compassionate end of life care for the patient, another would have been to provide compassionate bereavement care for the family. Perhaps then they would not have made the aggressive decisions, would not have left the ICU if the had decided for continued care, would have been with Mrs. Jones when she died, and received the support they needed. The chaplain can also, as a member of the team, participate in the team conversations to determine a plan of care that encompasses the identified beliefs and values. What is often missed is a collaborative team approach, and that is unfortunate for everyone.

  21. Julie

    It seems to me that Mrs. Jones had been failed by many along her journey at the end of life. If she was receiving chemo for cancer, then there had been other healthcare professionals involved with Mrs. Jones and her family long before she came to the hospital this last time. Why didn’t any of them have those conversations early in the disease process?

  22. Robert Jones

    Death has something in common with mental illness,–we fear them because we know we have limited control over them. We tend to think in black and white terms. Black and white is less complex.

    Monica has made us all paramedics of the soul. We stand on the diving board with others, and comfort them in their final dive into a higher plane.

    I think God does not author the stories of life in black and white. Rather he uses a rainbow of colors in His penning.

    Monica,— maker of rainbows.


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