How Mom’s Death Changed My Thinking About End-of-Life Care

My father, sister and I sat in the near-empty Chinese restaurant, picking at our plates, unable to avoid the question that we’d gathered to discuss: When was it time to let Mom die?

It had been a grueling day at the hospital, watching — praying — for any sign that my mother would emerge from her coma. Three days earlier she’d been admitted for nausea; she had a nasty cough and was having trouble keeping food down. But while a nurse tried to insert a nasogastric tube, her heart stopped. She required CPR for nine minutes. Even before I flew into town, a ventilator was breathing for her, and intravenous medication was keeping her blood pressure steady. Hour after hour, my father, my sister and I tried talking to her, playing her favorite songs, encouraging her to squeeze our hands or open her eyes.

Doctors couldn’t tell us exactly what had gone wrong, but the prognosis was grim, and they suggested that we consider removing her from the breathing machine. And so, that January evening, we drove to a nearby restaurant in suburban Detroit for an inevitable family meeting.

My father and sister looked to me for my thoughts. In our family, after all, I’m the go-to guy for all things medical. I’ve been a health-care reporter for 15 years: at the Dallas Morning News, the Los Angeles Times and now ProPublica. And since I have a relatively good grasp on America’s complex health-care system, I was the one to help my parents sign up for their Medicare drug plans, research new diagnoses and question doctors about their recommended treatments.

In this situation, like so many before, I was expected to have some answers. Yet none of my years of reporting had prepared me for this moment, this decision. In fact, I began to question some of my assumptions about the health-care system.

I’ve long observed, and sometimes chronicled, the nasty policy battles surrounding end-of-life care. And like many health journalists, I rolled my eyes when I heard the phrase “death panels” used to describe a 2009 congressional proposal that would have allowed Medicare to reimburse physicians who provided counseling to patients about living wills and advance directives. The frenzy, whipped up by conservative politicians and talk show hosts, forced the authors of the Affordable Care Act to strip out that provision before the bill became law.

Politics aside, I’ve always thought that the high cost of end-of-life care is an issue worthy of discussion. About a quarter of Medicare payments are spent in the last year of life, according to recent estimates. And the degree of care provided to patients in that last year — how many doctors they see, the number of intensive-care hospitalizations — varies dramatically across states and even within states, according to the authoritative Dartmouth Atlas.

Studies show that this care is often futile. It doesn’t always prolong lives, and it doesn’t always reflect what patients want.

In an article I wrote for the Los Angeles Times in 2005, I quoted a doctor saying: “There’s always one more treatment, there’s always one more, ‘Why don’t we try that?’ … But we have to realize what the goals of that patient are, which is not to be in an intensive-care unit attached to tubes with no chance of really recovering.”

That made a lot of sense at the time. But did it apply to my mom?

We knew her end-of-life wishes: She had told my dad that she didn’t want to be artificially kept alive if she had no real chance of a meaningful recovery. But what was a real chance? What was a meaningful recovery? How did we know if the doctors and nurses were right? In all my reporting, I’d never realized how little the costs to the broader health-care system matter to the family of a patient. When that patient was my mother, what mattered was that we had to live with whatever decision we made. And we wouldn’t get a chance to make it twice.

As my mom lay in the ICU, there was no question that her brain function was worrisome. In the hours after she was revived, she had convulsions, known as myoclonus, which can happen if the brain lacks oxygen. After that, she lay still. When the neurologist pricked her with a safety pin, she didn’t respond. When he touched her corneas, they didn’t reflexively move.

I began checking the medical literature, much like I do as a reporter. I didn’t find anything encouraging. Studies show that after 72 hours in a coma caused by a lack of oxygen, a patient’s odds of recovery are slim to none. I asked my writing partner in New York to do additional research. She, too, found nothing that would offer much hope.

But couldn’t my mom beat the odds? Harriet Ornstein was a feisty woman. At age 70, she had overcome adversity many times before. In 2002, weeks before my wedding, she was mugged in a parking lot and knocked to the pavement with a broken nose. But she was there to walk me down the aisle — black eyes covered by makeup. She had Parkinson’s disease for a decade, and in 2010 she suffered a closed head injury when a car backed into her as she walked down a handicapped ramp at the drugstore. Mom persevered, continuing rehabilitation and working to lead as normal a life as possible. Might she not fight through this as well?

Truth be told, I was already somewhat skeptical about physician predictions. Just last summer, my dad’s heart stopped, and it took more than 10 minutes of CPR to revive him. Doctors and nurses said a full neurological recovery was unlikely. They asked about his end-of-life choices. Mom and I stayed up late talking about life without him and discussing the logistics of his funeral. But despite it all, he rebounded. He was home within weeks, back to his old self. I came away appreciative of the power of modern medicine but questioning why everyone had been so confident that he would die.

Also weighing on me was another story I wrote for the Los Angeles Times, about a patient who had wrongly been declared brain-dead by two doctors. The patient’s family was being urged to discontinue life support and allow an organ-donation team to come in. But a nursing supervisor’s examination found that the 47-year-old man displayed a strong gag-and-cough reflex and slightly moved his head, all inconsistent with brain death. A neurosurgeon confirmed her findings.

No one was suggesting that my mom was brain-dead, but the medical assessments offered no hint of encouragement. What if they were off-base, too?

Over dinner at the Chinese restaurant, we made a pact: We wouldn’t rush to a decision. We would seek an additional medical opinion. But if the tests looked bad — I would ask to read the actual clinical reports — we would discontinue aggressive care.

A neurologist recommended by a family acquaintance came in the next morning. After conducting a thorough exam, this doctor wasn’t optimistic, either, but she said two additional tests could be done if we still had doubts.

If more tests could be done, my dad reasoned, we should do them. My sister and I agreed.

On Friday morning, the final test came back. It was bad news. In a sterile hospital conference room, a neurologist laid out our options: We could move my mom to the hospice unit and have breathing and feeding tubes inserted. Or we could disconnect the ventilator.

We decided it was time to honor my mom’s wishes. We cried as nurses unhooked her that afternoon. The hospital staff said it was unlikely that she would breathe on her own, but she did for several hours. She died peacefully, on her own terms, late that night — my dad, my sister and I by her side.

I don’t think anyone can ever feel comfortable about such a decision, and being a health reporter compounded my doubts.

I was fairly confident that we did what my mom would have wanted. But a week later, when I was back in New York and had some emotional distance, I wondered how our thinking and behavior squared with what I’d written as a reporter. Did we waste resources while trying to decide what to do for those two extra days? If every family did what we did, two days multiplied by thousands of patients would add up to millions of dollars.

Curious how experts would view it, I called Elliott S. Fisher. I’ve long respected Fisher, a professor of medicine at Dartmouth and a leader of the Dartmouth Atlas. The Atlas was the first to identify McAllen, Texas, subject of a memorable 2009 piece in the New Yorker by Atul Gawande, for its seemingly out-of-control Medicare spending.

I asked Fisher: Did he consider what my family did a waste of money?

No, he said. And he wouldn’t have found fault with us if we decided to keep my mom on a ventilator for another week or two, although he said my description of her neurological exams and test results sounded pessimistic.

“You never need to rush the decision-making,” he told me. “It should always be about making the right decision for the patient and the family. … We have plenty of money in the U.S. health-care system to make sure that we’re supporting families in coming to a decision that they can all feel good about. I feel very strongly about that.”

Plenty of money? How did this mesh with his view that too much money is spent on care at the end of life? He said his concern is more about situations in which end-of-life wishes aren’t known and cases where doctors push treatments for terminal illnesses that are clearly futile and that may prolong suffering.

“I don’t think the best care possible always means keeping people alive or always doing the most aggressive cancer chemotherapy,” he said, “when the evidence would say there is virtually no chance for this particular agent to make a difference for this patient.”

I left the conversation agreeing with Fisher’s reasoning but believing that it’s much harder in practice than it is in theory. You can know somebody’s wishes and still be confused about the appropriate thing to do.

The past few weeks have been the most difficult of my life. I hope what I learned will make me a better, more compassionate journalist. Most of all, I will always remember that behind the debate about costs and end-of-life care, there are real families struggling with real decisions.

Charles Ornstein is a senior reporter at ProPublica , where this post originally appeared.

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28 replies »

  1. Charles I am really sorry for your loss of your mother. The decisions that you and your family made for your mother during her final days are the some of the tough decisions that I see families go through as a nurse in the ICU. Many patients do have advanced directives that state, “if there is no real chance of recovering then they don’t want to be on life support”. Medical professionals, as well as families, have a hard time defining “what is a real chance” or “define recovery”. That is why it is so important to talk with our families beforehand about our medical wishes. Just like you mentioned in your post…..just because we can doesn’t mean we should. There is always one more treatment or one more option to try but that may not be the best option for our loved ones who are the ones that are suffering.

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  5. “I’d never realized how little the costs to the broader health-care system matter to the family of a patient. When that patient was my mother, what mattered was that we had to live with whatever decision we made. And we wouldn’t get a chance to make it twice.”

    Very true and insightful. Thanks for sharing this.

  6. As a retired RN, and having lost both parents, I sympathize with the heart-wrenching decision you had to make (and the proper one was made in my humble opinion).

    The most difficult situations for me, and probably most nurses, were providing the proper care for patients in a comatose condition. They must be turned every two hours, meticulously bathed at least once per day, diapers changed immediately upon being soiled, etc, etc., to maintain skin integrity. And, even with this, the human body breaks down on bedrest even after eight hours no matter what level of care is provided. This is very, very time consuming and requires a large support staff, which unfortunately, hospitals just don’t provide any longer. The ICU’s have two patient limits, but the medical floors, depending on each state, as many as ten patients per nurse.

    Also, many modern Americans are disconnected from their family members, don’t visit often, and rarely get involved with their care when they do. So, for a myriad of reasons, nurses go home with tears in their eyes and broken hearts for their patients that he/she just didn’t have enough time or manpower to treat them as we would our own family member.

    I am absolutely for end-of-life counseling and making it simple, even imperative, for patients to complete medical directives. But, the ‘death panels’ of the ACA is not this requirement, but the limiting of drugs, surgeries and interventions based on life expectancy vs. costs. This is where the real drama will unfold in the next few years as the program rolls out.

    Thanks again for sharing your experience and pain.

  7. More computers = less communication. Why? The EMR has become the patient. There is very little time for the health professionals to respond to the needs of the families when they are responding to the needs of big business, the hospitals’ cash registers, the government, and the grids on the EMR.

    I suggest you complain to your brilliant Congress people.

  8. My mother recently passed from complications associated with Parkinson’s disease. The emotional impact of my family member dying was extremely difficult as my roles of provider, child and individual all came into play on how and when to intervene.

    My biggest complaint was the coordination of care. The geriatric physician at the nursing home never formally met with my father or mother and told them that it was time for hospice. It was only implied. I am the one who told my father that there were no more therapies or treatments that could help my mother. I asked that someone formally meet with my father and mother and discuss it. Hospice came and opened the case and I think it was just a routine admission for them. I also found out that the nursing home did not allow the hospice nurse access to my mother’s medical records on her shift to shift status, she had to ask. The NH social worker was a good case manager but was extremely busy I live 800 miles away and the information I received was inconsistent from all the providers.

  9. Your lingering questions will not be answered honestly by the hospital especially if its electronic record and ordering devices facilitated errors, contained data that came back silently and was not in the hands of the doctors and nurses, and caused delays and other impediments to care. You will need a lawyer and IT medical informatics forensic specialist to piece together the sequence of events.

  10. The Ornstein family experience is repeated thousands of times each day, but without the insights that Charles was articulate enough to share with all of us. Thank you, Charles.

    Fortunately, we are beginning to talk publicly about these issues. TIME magazine recently did a cover story on the subject. NPR has aired at least four documentaries on end of life care in the last eight months. ABC News has adopted the advancement of end of life care discussions as a corporate goal, and the New York Times has published several end of life care stories in the past two months.

    Last September, the Emerson Forum of Tampa sponsored the first of two conferences on end of life care in a former, front line battle ground. The venue was the court room of the Second District Court of Appeal in Tampa, Florida, where some of seven years of litigation was heard, regarding the care of Terri Schiavo..

    “End Of Life Care After Terri Schiavo” included four, diverse speakers. Two were condensed into short video clips on the Emerson Forum website and on You Tube.

    One video captures remarks from Prof. Jay Wolfson, who was a court-appointed guardian for Terri Schiavo. The other features award-winning author Janice Van Dyck, whose novel, “Finding Frances,” mirrors some of the struggles the Ornstein family faced–and more.

    Both speakers described the challenges–and perils–that await even those with fully-executed Advanced Healthcare Directives and Durable Powers Of Attorney for Healthcare Decisions. As the Robert Wood Johnson Foundation also discovered and reported more than two decades ago, some of our most prestigious medical centers ignore them.

    Such responses from leading American healthcare institutions have led to the creation and growth of organizations like the Hemlock Society, the Final Exit Network and other “self help” organizations.

    They have seen that despite more than two decades of litigation and legislation to affirm a patient’s right to refuse medical care, many American physicians and hospitals still refuse to respect, honor or comply with such patient and family choices.

    In the case of Charles’ mother, such was fortunately not the case— but imagine his story if his mother’s doctors and hospital refused to honor both an Advanced Healthcare Directive and the family’s decision.

  11. Thank you all for your thoughtful comments. Re: advanced directives, my mom didn’t have one, but she told my father what she wanted. The problem, as I mention, is that even when you give instructions, what do they mean exactly? It involves interpretation. What is a real chance? What is a meaningful recovery? Somebody has to make those decisions.

    Whatsen, we have a lot of lingering questions. I am asking those.

  12. Condolences. Tough case, because the sudden unexpected cardiac arrest happened during a procedure that is thought of as routine but oft done without adequate indication. People do not die from inserting NG tubes, generally.

    The catastrophe must have freaked out the nurse putting in the tube.

    So much so that hypothermia chilling post cardiac arrest to protect the brain was not done? Did the CPOE device impede her treatment? Who orgered the NG tube and why? For what purpose? Was the staff adequately trained to do it?

    In ProPublica, you stated, about the Rory Staunton case of death: “Addressing the types of failures that led to Rory Staunton’s death depends on redirecting resources at a time when they are scarce and accountability amid the chaos of busy hospitals. And it depends on convincing people that something as simple as adding one new task to an already long list could save lives.”

    It is hard to let nature take its course when humans and infrastructure fail the loved one.

    You and your family did the right thing about the transition from life to death, but you would be remiss if you did not insist that the infrastructure dysfunction and/or failure that brought her to the end of life did not get scrutiny and surveillance.

    Peace and comfort to you

  13. I am sorry for your loss Charles, and thank you for sharing your thoughts and feelings. Your resonates debate exactly. Medicine can be both the calf and the butcher. It’s hard to judge which role to play, let alone which role to play in a financially responsible manner.

    I was in your shoes a year ago. Isn’t it amazing how quickly we shed our opinions of these things when it hits home? Am I really supposed to talk to my dying friend about his coming death because a New Yorker article told me to? Cherish these moments when the frosting is scraped off the cake – you’ll learn exactly what lies underneath.

  14. ““You never need to rush the decision-making,” he told me. “It should always be about making the right decision for the patient and the family. … We have plenty of money in the U.S. health-care system to make sure that we’re supporting families in coming to a decision that they can all feel good about.””

    THAT should be written in stone over every health care portal and in the halls of Congress –

    Death is never only about the person dying …. Anyone who has any respect for “family values” understands that …

  15. I am very sorry for your loss. I went through my version of this with both my parents 11 years ago.

    Both had told us kids repeatedly that they didn’t want anything “heroic” done to prolong their lives: no feeding tubes, ventilators, etc. But beyond that there was no guidance.

    My 85 year old dad was hard until I talked to a wonderful Hospice nurse, who explained to me that my role was no longer keeping him alive, but helping him to die with dignity. He had lost his mental capabilities, and was losing some physical ones. We withdrew the cocktail of meds he was on, and he died 10 days later, probably of a heart attack or stroke.

    My 84 year old mom made it easy for us because, crippled 2 years before by a stroke, and having lost her husband, she decided it was time to go and stopped eating and drinking. Without talking, it was clear that my job was to end her meds, fight off the nursing home people who wanted to take her to the hospital for an infection, get my siblings there, and hold her hand. We did that.

    My lesson learned was that a Medical Directive is just the first step. It is critical to be crystal clear with my wife and children as to when to stop keeping me alive — even if I am not in the high tech medical crisis position your mother was in. The key for many, and my written instructions, will be when to withdraw treatment for chronic illness. I have tried to define a quality of life below which I don’t want to go.

    Thanks for the great article.

  16. At the risk of sounding crass and harsh…dying is indeed a normal part of life. For so long in many cases we as a society demanded extraordinary procedures to prolong what is a known outcome.

    The cost (here is the crass part) such a huge percentage of our Medicare resources are spent in the last 30 days of life that it has become absurd. In a more rational existences, those resources would be redirected to the front end of human health care which would, in my mind, add to the quality and quantity of life to a much larger segment of humanity.

    Your narrative captures much of the equation, but in my mind the resources must be focused on diagnosis and treatment at the front end of the continuum.

    • “Rational” about death? All responsible stewards of the health care system and its resources also wish it were so, Ray, but..

      …the important and durable policy point of this post, I believe, is that even the most skeptical and informed people are subject to emotion, anguish and self-doubt in the face of the most fundamentally terrifying fact of the human condition. The comments from Eliot Fisher were especially powerful, as he’s one of the more ferocious among those who know that we should not be squandering precious resources for no good medical reason – and yet he would not recommend any other course of action than what Charlie and his family had to do in this situation.

      And those are the rational people. As for most everybody else who does not bathe in these issues all day long for work, “rational” leaves the hospital building the moment a loved one enters it. The ugliest example in recent memory was the Terry Schaivo case, and the worst enduring proof was the utter hysteria elicted, as pointed out in this post, by even the mention of paying physicians, finally, to discuss end of life issues with Medicare beneficiaries. That, in the minds of the Tea Party know-nothings, amounted to “death panels” – and it was removed in short order from the health reform legislation.

      We are making no progress here, and God help anyone who tries. With fear in high season in DC (for the unforeseeable future), the demagogues in DC would have their heads.

  17. I am very sorry for you loss. It seems as if your mother was a remarkable and powerful woman, and it is sad to learn of her death.

    While I might have hoped that you would have received somewhat better professional support while making what was obviously a very tough decison, I believe that given the difficult world of sudden, devastating medical events, this was nearly ideal care and decision making. If all cases were decided with such emotional and cultural maturity, we would not have an “end-of-life problem” in this country. While not understating, by any means, how hard this must have been on you and your family, you did a superb job and can feel you gave your mother not only the best chance for recovery, but also the best chance for dignity and comfort.

    The major medical problem we have in this country is centered around poor planning (at least you knew what you mother wanted which by itself is unique and empowering), poor medical commucation (your doctors were honest about the probablities and you sought more information where needed), denial (while painful you confronted this with eyes wide open) and a broad tendancy of the medical profession to offer futile false hope and treatment, instead of communication which might allow patients and families to cope. We often add to this a bizarre societal tendancy to believe we can avoid any conversation about death.

    One of the greatest gifts we can give is the opportunity to die gently, when the time comes. You have my respect and admiration for allowing and helping your mother to end her life with little suffering, surrounded by the people she loved.


    • “Major medical problem we have in this country is centered around poor planning, poor medical communication, denial (while painful you confronted this with eyes wide open) and a broad tendancy of the medical profession to offer futile false hope and treatment, instead of communication which might allow patients and families to cope. We often add to this a bizarre societal tendancy to believe we can avoid any conversation about death.” — I couldn’t agree more with this comment!

      As an ICU nurse, I have witnessed patients passing so peacefully with their family at their bedside. At the time, families may not see their loved one dying as a “gift”, but years down the road they will remember the last hours spent with their loved one which they will cherish.

  18. I am sorry for your loss. Your Mom sounded like a great lady. What Sally said – this is a courageous and heartfelt piece of work.

    There is no health policy or politics when it comes home. Ask any honest health plan executive with a kid who needs an experimental treatment.

    At the risk of sounding shamelessly self-referential, I had the same kind of encounter with the system and also wrote about it on here:


    Best to you and your family….and may your mother’s memory be a blessing.

  19. I think this is a great post and a courageous one. But I think the better question to ask – What could the system around your family have done differently to make your last few days easier? Is there any counseling or support that could have helped with your decision? Maybe not, but I think in terms of the broader policy questions that you address about end-of-life care, we should be trying to get ideas from your experience about where to put meaningful support in place for families.

  20. Very moving and important post. Thanks for writing this. And of course, you and your family did everything right. This should be obligatory reading for everyone, both medical and non-medical, who has yet to properly execute an advance directive for medical care.

    All beneficiaries of Medicare or any insurance policy should have an advance directive on file, properly signed, witnessed and updated every five years or less. There should be no less than three designated agents who know who they are, who have agreed to the responsibility and know where the documents are to be found. In some states the agent for medical decisions cannot be the same person with POA for other matters.

  21. Excellent post, Charles.

    My doc friends and I always talk about the “mom test”…

    As in — “Yeah okay, but what would you want them to do if it was your mom?”

    We get pretty interesting and revealing answers …

  22. Sorry about your loss.

    Hands down- This is the SINGLE most important issue facing the US medical profession and for that matter the US culture.

    Someday we as a profession and a culture will mature around this issue!

    Currently we are stiil very much in our “adolescence”

    Dr. Rick Lippin

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