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

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

28
SHARE

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.

Leave a Reply

28 Comments on "How Mom’s Death Changed My Thinking About End-of-Life Care"


Guest
Cassie Stegeman
Dec 12, 2014

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.

Guest

I am truly happy to glance at this website posts which includes plenty of valuable data,
thanks for providing these kinds of statistics.

Guest
Oct 12, 2014

you are in point of fact a just right webmaster. The
web site loading speed is amazing. It seems
that you’re doing any unique trick. Also, The contents are
masterpiece. you’ve performed a magnificent job
on this topic!

Guest

That is really interesting, You’re an excessively professional blogger.

I’ve joined your rrss feed and look forward to in the hunt for extra of your wonderful post.

Additionally, I’ve shared your website in my social
networks

Guest
Sep 23, 2014

What’s up, its good piece of writing on the topic of media print, we all know
media is a wonderful source of information.

Review my blog: nc injury attorney (Gale)

Guest
Sep 23, 2014

I think the admin of this web page is in fact working hard in favor of his website, as here every information is
quality based material.

Also visit my site; personal injury qld (Douglas)

Guest
Aug 29, 2014

Hello mates, good article and pleasant arguments commented at this
place, I am actually enjoying by these.

Feel free to visit my weblog … homepage [Tabatha]

Guest
Jun 16, 2014

Mi nombre es Devon y sólo en busca de un lugar para pasar el rato y hablar de tecnología. Soy un usuario de Ubuntu y he estado usando desde 8,04

Guest

“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.

Guest
Susan Borden
Mar 23, 2013

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.

Guest
Problem Child
Mar 2, 2013

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.

Guest
Patricia Reisinger
Mar 1, 2013

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.

Guest
Whatsen Williams
Mar 1, 2013

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.

Guest
Feb 28, 2013

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.

Guest
Feb 28, 2013

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.