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Two medics roll Mrs. M into the emergency department. Sweat drips from her forehead. Her chest heaves in and out as she tries to suck every last oxygen molecule from inside the oxygen mask. I introduce myself and she opens her eyes but her glassy stare lands beyond me. “She has metastatic breast cancer,” says one of the medics. “She’s in hospice. But her son wants everything done.”

“Doing everything isn’t a plan that’s compatible with hospice,” I mutter.

“We didn’t know what to do,” says the medic, shaking his head. “She wasn’t this bad when we arrived at her home. She was working to breathe, but not like this.”


Hospice care aims to provide compassionate care for people near the ends of their lives. This type of team-oriented medical care focuses on controlling pain and other symptoms and meeting the emotional and spiritual needs of patients and their family members. Although some hospice care is provided in special centers, most is provided in patients’ homes. Hospice workers visit daily to help their patients die with dignity and free from pain.

That should have been what happened with Mrs. M (not her real name). But her son called 911 and now she is in the emergency department. I ask the medics for any hospice-related paperwork. They raise empty hands. There’s no advanced directive or POLST form, either, meaning no documentation telling me what kind of end-of-life care Mrs. M wanted — or didn’t want.


“Is her son here?” I ask.

Paul (not his real name) is a thin, nervous man; his windbreaker is zipped to his throat. In a trembling voice he describes how his mother hadn’t been feeling well all day and had gotten worse during the evening.

“Please, doctor, do something,” he says.

It’s neither a request nor a demand. It’s a plea that contains a quiet emotional force and presumes we share a common understanding on one key point: what that “something” is.

I must take some definitive action very soon. Normally, the lungs take in oxygen and expel carbon dioxide. Monitors show that not enough oxygen is reaching Mrs. M’s bloodstream and carbon dioxide is building up to a dangerous level. That’s partly why she’s so somnolent. A portable chest X-ray reveals lungs overrun with cancer and a cloud suggesting pneumonia.

Although most Americans say they want to die at home, many die in hospitals. That’s due to a range of factors, including challenges in end-of-life planning and communication. An effective and meaningful process requires several elements to be in place. Patients must discuss their goals of care with family members and health care providers. These wishes and discussions must then be documented, kept up to date, and made available to emergency providers like me who, confronted with hard decisions under pressing time constraints, could desperately use some guidance.

When a patient no longer has the ability to make decisions, designated surrogates — which is what I assume Paul is — make decisions as the patient would have, meaning consistent with their wishes and goals. But I’ve observed how even the most loving, informed, and prepared surrogates can be knocked off balance when the moment finally comes to make decisions.

I explain to Paul that his mother will die if I don’t insert a breathing tube into her airway and connect her to a ventilator. He nods. He knows those interventions won’t cure the irreversible metastatic breast cancer that’s killing her. He confirms her wish for hospice care. I ask what he understands hospice to mean.

But he answers a different question. “Do everything,” he says.

I bite my lip, quickly turning away so Paul won’t see the heat beaming from my eyeballs. And I’m suddenly ashamed. He seems so fragile. I worry that my frustration will shatter him into pieces. But I have a dying, barely responsive patient who is unable to speak for herself and a family member begging for treatment that, to the best of my knowledge, contradicts her wishes.

Mrs. M weighs more than 300 pounds. The oxygen mask conceals a small mouth. She has a short neck and many chins. These physical attributes are important because it will likely be a challenge to pass a breathing tube down her throat. Medications to relax her airways aren’t working. And she’s too sleepy for a BIPAP mask, a form of noninvasive ventilation for acute respiratory failure that might otherwise buy us some time.

The nurse I am working with shoots me a look, that look, a wordless kick in the ass. We don’t have time.

As I describe what it will take to “do everything,” Paul scrunches up his face. We will first try to intubate Mrs. M, which means putting a breathing tube down her throat and into her airway, then connect it to a machine that will breathe for her. If we can’t intubate her, we will cut into her neck with a scalpel and insert the breathing tube below her vocal cords, a procedure known as cricothyroidotomy. To me that is cruel and unnecessary treatment for someone who likely wants comfort measures only. It also puts the physicians and nurses caring for Mrs. M into a morally distressing position.

I then detail the comfort care we would provide his mother if we honor her wishes. It includes giving her oxygen, controlling her pain, and using medications to mitigate her shortness of breath and air hunger. The goals of that care — to relieve suffering — are different, but would be just as aggressive as “doing everything.”

I tell Paul, “We’re staying right here. We won’t leave your mother alone.” I’ve cared for patients or families who choose to “do everything” even if it’s not what they desire out of fear their loved one will otherwise be abandoned.

He suggests that we wait. He needs to talk to his sister. It’s almost 2 a.m. and she’s at work.

I shake my head. Indecision is the worst possible decision.

“She’s coming. She should be here in an hour.”

As an emergency physician, my goal is to save lives. But I can also help provide patients with good deaths. From my perspective, you usually have just one chance to do that, and this one is slipping away.

Advanced directives speak for us when we lose the mental capacity to speak for ourselves. They chronicle our values and beliefs, what brings us joy, the burdens we’re willing to endure for an acceptable quality of life, and when we’d refuse or stop treatment.

The Patient Self-Determination Act was implemented in 1991. It requires most health care institutions to give you a written summary of your health care decision-making rights, ask if you have an advance directive, and document the answer in your medical record. Sadly, the cherished idea of respecting patient autonomy and preserving dignity at the end of life by providing cogent directions to health care providers like me hasn’t translated well into practice.

Physician orders for life-sustaining treatment (POLST) programs hold promise as medical orders that communicate specific preferences for patients facing life-limiting illnesses. However, these documents may contain confusing or even contradictory instructions that must be interpreted by physicians at a time of crisis when clarity is needed. For example, a form indicates a patient doesn’t want any resuscitative efforts and desires a “natural death only” but also expresses no limits on medical interventions, which implies “do everything.”

What may seem to be contradictory instructions could actually just reflect challenges inherent in predicting unforeseen situations. A patient with congestive heart failure may ask not to have CPR if her heart suddenly stops, but may want to try intubation if her lungs fill with fluid, because that condition might be reversible.

I wasn’t sure what Paul understood. Sometimes family members are overwhelmed by making potentially life-changing decisions for their critically ill loved ones. The experience can produce profound emotional consequences later on. Though I was horrified by the possibility of performing lifesaving measures on a patient who apparently had other preferences, I wasn’t in a position to unilaterally decide that “doing everything” was inappropriate.

Unable to contact Paul’s sister, and with Mrs. M deteriorating quickly, I decide to intubate her.

I am grateful that the breathing tube slips in easily. For the moment, Mrs. M is stable and sedated, a ventilator breathing for her.

But now I’m distressed. Intubating her feels wrong, though necessary given the circumstances.

I finally have a chance to dive into Mrs. M’s medical records. The electronic medical record should make locating and honoring advance care planning information easier, especially in emergency settings where having this information readily available helps provide care that aligns with the patient’s wishes. But this documentation, even among older patients, often isn’t available.

I find a note in the record from Mrs. M’s oncologist. Earlier in the week this doctor told Mrs. M that she had a month to live, maybe two. Mrs. M then refused any further chemotherapy and said she didn’t want to be intubated or receive CPR. It was at this visit that her oncologist referred her to hospice care. The note also alluded to difficult conversations with the family, who were less accepting of Mrs. M’s prognosis than she was.

Paul’s sister, Violet (not her real name), finally arrives. Like me, she’s dressed in scrubs, having been summoned from her work as a certified nursing assistant in a nursing home. Even after I share with her and Paul what I read in her mother’s medical record, Violet insists that we keep her mother on the ventilator.

“Please?” she asks.

The ventilator breathing for Mrs. M has been giving her tissues oxygen while blowing off carbon dioxide. She gradually becomes more alert. Soon she’s gesturing to pull out the breathing tube.

“She wants to talk,” Violet says.

“To do that, I’ll have to take out the tube,” I say.

“We know she’s dying,” Violet says, her teary eyes turning to her mom. “We were hoping for a little more time.”

I have heard this many times from families. Their expectations might seem unrealistic, but they’re doing their best to keep the reality of death in the future. There is a profound difference between the idea of dying when death is an omnipresent shadow on some distant horizon and when it is happening right now.

We give Mrs. M morphine to keep her comfortable and pull out the breathing tube. She shares kisses with Violet and Paul. We pull in chairs and her family gathers around the emergency stretcher.

“She raised us all by herself,” says Violet, holding her mother’s hand. “She worked every day, I mean every day, to support us. She is a fighter, the toughest woman you ever met.”

I look at Paul, sitting beside his mother and rubbing her arm. Of course he was going to insist on doing everything — what the oncologist and providers like me consider compassionate care is, in his mind, giving up.

Mrs. M’s breaths are slow and shallow. Sister and brother collapse into each other’s arms. I take over holding Mrs. M’s hand, almost as an apology for what I’d done. I could have framed the discussion with her children differently, recognizing not only their mother’s wishes but supporting the emotional needs of the decision-makers.

In a 1995 article, bioethicist Daniel Callahan wrote, “Is death a friend or an enemy, to be acquiesced to or to be fought?” He said that the American health care system isn’t sure how to answer that question. I think the same holds true for most families.

A peaceful quiet takes over the room. For the first time I notice gratitude in Paul’s and Violet’s faces. A nurse lowers the lights in the room and shuts off the monitor. Mrs. M’s breaths come more slowly, her chest barely rising with each one. I breathe a silent sigh of relief, grateful that Mrs. M got a second chance at a good death.

Jay Baruch, M.D., is associate professor of emergency medicine and director of the Medical Humanities and Bioethics Scholarly Concentration at the Warren Alpert Medical School of Brown University in Providence, R.I. Some of the details of this case have been changed.

  • I have bared witness to the tragedy of losing an 84 yr old parent because of The opposition of DNI Mistakenly done by a student in the hospital. I’m glad to read your article. Intubation will only take away the quality of life they have left. I’m so disheartened

  • When I visit my sister in icu she had a triple bypass surgery heart,she was on life support but she was coherence a little,when you called her name she would open her eyes and then close them,but as I was talking to her she turned her head away from me.and she passed 2 days later.

  • The ER physician nor the ER nurse called the hospice to have a Nurse, SW, Chaplain, or Hospice Physician assist the family at the hospital. These trained end of life professionals not only help the patient with symptoms but also help with psychosocial and spiritual needs for the patient and family. It is sad that community and facility physicians do not understand how helpful the hospice professionals can be. It is sad hospices do not get the training to these physicians or physicians will not accept hospice philosophy. This hospital physician and family would have had less distress by making one phone call.
    When hospices do not follow their mission then state, federal and accreditation agencies need to be notified.

    • Unfortunately I had to deal with a situation that a hospital failed to offer my poor 68 year old father ANY hospice or palliative care services and sent him home to die ONLY because I kept complaining about his care. The hospital still confirmed he had stage 4 CKF, and NOT ESRD. He had trouble breathing and pain due to being put in opioid withdrawal by the resident overseeing his care. He was discharged so poorly with DOH deficiencies and discharge papers that had incorrect medication and missing multiple important facts about his medical history. He was taken back to ER 4 days later by ambulance with same complaints as before discharge and suffered a pulmonary embolism due to ER doctor not meeting standard of care and following through on STAT testing including D-Dimer and troponin numbers. Abnormal ecg and cardiologist didn’t come until over 2 hours to examine him. My dad went into distress begging me to help him breathe, begging for me to help him, and I was frozen screaming daddy I luv you, daddy I luv you, knowing exactly what was happening. He was pronounced dead at 214pm after being triaged at 1118am. If the hospital didn’t force discharge him, take him off of blood thinner after a major colostomy surgery, and sent home with ESRD and no plan of care to help him with his last days of life. This all could have been avoided if the hospital IF they did what they should have done for him and my siblings. It’s disgusting and I have nightmares about this ordeal and in therapy to cope. Its terrible that all these care options are available but never followed through by our healthcare system, they failed us and we pay the price.

    • Oh that is something I didn’t know about. I had contacted all agencies from DOH, CBS, and OPMC. Can I contact a agency about reporting the hospital for discharging and not offering any of those services since my dad was diagnosed with ESRD and was basically sent home to die? Who can I report this to?


    Sending a dying patient to the hospital
    provides no benefit to anyone.
    It traumatizes the patient, the family, & all the medical providers.
    And it makes no difference in the final outcome:
    The patient will inevitably die,
    no matter what is done.

    If the family wants “more time” with the dying relative,
    let them devote that time
    BEFORE there is any need for hospitalization.

    Having a written end-of-life plan
    —which everyone concerned has read and agreed to—
    should prevent any and all chaotic scenes
    in the intensive care unit of the hospital.

    If there is one relative who says “do everything”,
    there should be social workers
    connected to the hospice program
    who will calm this person
    and point out that everyone has already agreed

    Let each written end-of-life plan
    say in bold letters:

  • This may really represent a failure on the part of the hospice program involved. “Paul” should have known to call hospice before calling 911, and one wonders how much real support and education the family had been getting. I’ve certainly heard many stories of hospice staff failing to provide the kind of compassionate care Dr. Baruch did. It sounds as though Paul had become frightened by his mother’s rapid deterioration and needed his sister’s moral support. It may not have been so much a matter of “Do everything,” as “Don’t make me go through this alone.” The dispreferred intubation gave the siblings the opportunity to say good-bye to their mother together in a setting in which they too felt cared for, and that may have been the best possible outcome. If I had been Mrs. M, I would have wanted the same for my kids.

  • I do not think such brief delays are tragic or the intent of directives to avoid.

    Some amount of futility is fine. The serve a purpose, they can provide months or years of quality care to some, protect golden years.

    It is a fact that natural death routinely follows close calls for our oldest. Many 100 yo’s have had aggressive treatment in prior decades and are sharp, happy. Few have not!

    Depression can be cured. When it is cheaper to kill then cure quality of life can be ignored. Futility is when absent easy to ignore. Gratitude in faces not for ER docs to find, there role is to be stopped not find excuses to stop. Over time, the er can be bridaled by patient.

  • I have been a supporter of PainlessDeath With dignity since the 80s when NJ started the NJ Cancer Pain Initiative. I have n end of life directive that I recently had scanned in my Hospital EHR. Hopefully, they follow my wishes in an unexpected event.

  • Hospice is a scam now. We had my father in law on hospice provided by the local non-profit visiting nurse. He had twice a week caregivers to help with showering. There is no “every day nursing visit”. One of them noticed that his legs were bloated and distended and told us to call the hospice service. They did not return messages for a day then said that they would not come out and we could take him to the emergency room if we wanted. No actual nurses came to check on him- just the care assistants. A nurse did arrive shortly after he died to dispose of his medications

    • I am so sorry to hear of your loss and your experience of Hospice during that painful time. I am a long time Hospice volunteer, and unfortunately, more home health care businesses have recently added “Hospice” to their menu of services. In my opinion, Hospice is highly specialized & shouldn’t be an “add-on”. Its important to find the best credentialed Hospice Organization in your area.

  • Wanting everything done has a whole host of inferences. Why not frame it back to patients and loved ones in terms of doing everything possible to keep the patient comfortable?

    This dichotomy that physicians fall back on that doing everything refers to life saving/sustaining treatment and it’s opposite, there’s nothing more that can be done, is simply false, and it needs to be discarded.

    Keep the discussion centered on comfort in the immediate and near future, and disregard the timing of death. Allow dying to come on its own terms and support patients and families in achieving what’s important to them: saying goodbyes, being present, achieving comfort and honoring the life lived.

    • Well said. Reframing the conversation from doing everything to sustain life to doing everything to achieve comfort at the end of life should be a priority when someone has been diagnosed with a life-limiting illness.

  • What I see here is a failure of whatever hospice organization they used. If the family had been properly supported by the hospice the peaceful end of life scene described at the end of the article could have been accomplished at home without the ambulance or the intubation.
    In my opinion many hospices, especially for-profit ones, are failing miserably at this support these days. They are quick to take the daily fee but are reluctant to dispatch the necessary staff at the end when the family and patient are in crisis.
    When my own father was losing his battle with pancreatic cancer I went through this. The hospice never sent someone out until I begged them, they told me to call their help line which appeared to be staffed by some college student who just told me “keep him comfortable”. How? I am not a trained medical professional? What does comfort mean? What are the sign/symptoms of discomfort? I had no idea, I had never seen anyone die before, and this was my FATHER.
    When the nurse finally arrived he yelled at me for not giving enough oxygen and told me he was suffering, then he left. I managed the rest of his death on my own, and fought the impulse to call 911 every minute for the next 48 hours.
    The hospice for the patient in the article failed with the family, failed with the patient , and failed with the paperwork which all should have been easily accessible by the paramedics.
    Unfortunately these failures are all too common by overworked and understaffed hospices whose management only cares about the money, not the patients.

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