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

One-fourth of Medicare spending occurs in the final year of life. But behind the oft-cited statistic are real families making agonizing decisions with outcomes that can’t be reversed. 

Charles Ornstein with his mother Harriet Ornstein on his wedding day, weeks after she was mugged in a parking lot and knocked to the pavement with a broken nose. (Randall Stewart, Photo courtesy of Charles Ornstein)

This story was co-published with The Washington Post.

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.

Senior reporter Charles Ornstein is board president of the Association of Health Care Journalists and can be reached at charles.ornstein@propublica.org.

Have you had to make end-of-life care decisions? Share your experience below.

 
 

Jane Ellen Ashley

Feb. 28, 2013, 9:39 a.m.

Thank you for a well written and thoughtful piece sharing a very personal story. I cared for my husband at home for 3 1/2 years, the last year of which provided little quality of life and the last 6 weeks he was “gone” - hallucinating and more. Hospice was wonderful as had been many docs, hosptial staff and healthcare center in 1st 4 mos. It was a true blessing when he died 5 1/2 years ago. So many people go through these struggles of caregiving and decision-making, which are emotionally draining and wrenching at times. The contributions you make through your work are essential to us. Thank you, again!

Wow, this is quite the article. I am so envious of You and your family.  It hurts like there is no tomorrow.  And that, in my humble opinion is Crazy! My Mum is 77 with Alzheimers and my Christian Baptist Family have SHUNNED me and they will not allow me any closure.  What happened in your family is a beautiful gift that U all received because you acted like Christians, whether or not U might be, but more importantly, you respected eachother and how each had to come to terms with losing your Mother.  U also did your research because thats who U are and what U do. Could U imagine if it was denied to U. My dad died of Parkinsons in four months apparently!  Please, I have lived a life that has been so hard, like your Mum, always fighting back. I’m tierd. I too was the medical person in our family, having raised a special son.  Will you please read my tweets and see if U can find it in your heart, to help me somehow.  Right now I need to get an expert opinion for my Son in America.  We always went there.  Google him, Devon, Chronic Intestinal Pseudo Obstruction.  Today my little Dog, my only chance here at Unconditional Love is having surgery to get this testes removed that are in the WRONG place.  I just need a break today.  Thank U. https://twitter.com/raahh_raahh

Lovely piece.

The time you spent and the tests you had done together with everyone else doing the same thing *add up* to millions, but the treatments the expert you talked to mentioned *start out* at millions. He’s right, these decisions should never be rushed. They’re hard. We can afford days or weeks in situations like yours where the patient really might beat the odds. It’s important to be as sure as we can that they won’t before taking the machines away. I don’t think anyone would think you should have done any differently.

(Apologies, first, for the personal tone, but the article seems to warrant it.  And obviously, I’m very sorry to hear that a woman that strong has died.)

For what it’s worth, I almost jumped out of my seat in anger over the idea that this would be “wasting millions of dollars.”

If those millions of dollars save one livable life, if they help a few dozen surviving families live with their decisions in dignity, that’s a tiny price to pay, a far better investment than a lot of other things our culture spends money on.  Refusing to put a dollar value on life and sanity is what separates humans from politicians and insurance executives.

I know it’s becoming a trend that doctors don’t want to be revived and, presumably, there’s a moral that neither should the rest of us.  But that path heads in the direction of eugenics, sterilizing “undesirables,” and so forth, turning evolution into a zero-sum game.  By the same token, why even bother raising a child with asthma, after all, since his life won’t be perfect?  We all know why.

Your family’s decision gave your mother every chance, was based on the best information possible, and agreed with her wishes.  That’s the right way to do it, not cutting loses like she’s a used car.  Celebrate life, mourn death, but don’t question if making the decision the day before or the day after would have been better.

Veronica James

Feb. 28, 2013, 11:30 a.m.

My Mom suffered oxygen deprivation when her too-small trach tube slipped out of her new stoma, and she was not seen to by RT for nearly 15 minutes and went into coma. She newer spoke nor moved again after that, and passed 6 months later. When she was awake her eyes and face were expressive and responsive, so I knew she was improving, but not enough to save her. I did not have to make that decision you did, Charles, but I know all too well know how you feel. Blessing to you and thanks for this article.

Dina J Padilla

Feb. 28, 2013, 11:35 a.m.

You & your family allowed your mother to die on her own with dignity.
Too often the medical treatments come too late and MEDICARE then gets gouged.

Thank you for an extremely well written and thoughtful piece. I faced this same type of situation in December, 2009 with my own mother. She had an advanced health care directive and my siblings and I followed it, but not without a great deal of discussion among ourselves and with her doctor. We came to the decision to stop all outside intervention and if she could not sustain herself, then it would be clear that it was her time to die. We called in hospice. She left the hospital on a Wednesday and died in the early morning hours of Sunday. It was her time. But that does not mean that we found it to be an easy decision. It was crushingly difficult, but it was the right thing to do. We need, in his country, to be much more open to enabling doctors and patients to talk about end of life options. We do not need to live in denial of the inevitable, but rather to plan for it so that we may each leave this life in the way that respects our decisions.

Herman Kattlove

Feb. 28, 2013, 12:23 p.m.

One of the problems with criticizing wasteful end-of-life care is that we only count the losers - those who die. We don’t have any data on how many people who get aggressive therapy for serious “end-of-life” conditions benefit and recover as did the reporter’s father.

when my wife of 62 years was diagnosed with pancreatic cancer and was given six months to live, she took the rational and accepting attitude: no heroics or or outlandish treatments. - We lived quite normally after she entered the hospice program of our HMO. The only treatments were palliative meds to keep her comfortable and pain free.
  At six months, an MD came and found that she was an outlier, continuing to live. Until 5 days before the end she tried to have a normal life and we even went out for a family lunch. Though getting weaker, she only complained about “how much longer do I have to put up with this?” She was ready to go.
Just before the seventh month passed she had a crisis and it was evident that the end was near. As jaundice came back into her face, she only spent two days being incapacitated and passed away without pain, with her family in attendance.
  The end must come for all of us and there is little use or sense in prolonging the agony for both the patient and the family.

  As far as the expenses of her last seven months are concerned, the only services she obtained from the hospice program were weekly nurses visits and all medications to keep her comfortable. But that did not prevent the hospice program for charging a huge “overhead”(??) of $1680/week for undefined, unspecified services, over an above the nurses etc costs for the seven months in the program. It turned out that the hospice program, patient at home with family providing room, board and 24/7 care, was more expensive than a superior nursing home provided the same:room, board and 24/7 care. The reason for that might be found in the CMS Manual:
From: Medicare Claims Processing Manual   Chapter 11 - sec.30 - Processing Hospice Claims
“Routine Home Care - The hospice is paid the routine home care rate for each day the patient is under the care of the hospice
and not receiving one of the other categories of hospice care. This rate is paid without regard to the volume or intensity of
routine home care services provided on any given day,...

This might reflect one aspect of the problem of very high costs paid by Medicare for the final illnesses.

Lynn Hanessian

Feb. 28, 2013, 1:36 p.m.

This segment from Rock Center on preparing advance directives is, like Mr. Ornstein’s incredibly touching article, is so important for everyone to consider: http://rockcenter.nbcnews.com/_news/2012/12/03/15645540-in-the-end-making-hard-decisions-about-dying-brings-personal-financial-benefits?lite. As much as we Americans believe we can have everything, death on our own terms needs to be prioritized.

Mary Gail Scottt

Feb. 28, 2013, 2 p.m.

The letting go is SO hard. My Dad had a stroke and when first his doc came in to talk with him, accompanied by a new doc who had just started at the retirement community where Dad lived, the new doc started talking about things that could be done, but the old doc hushed him. Dad was 92. He had all the required end of life directives plus. Dad brightened when the new doc began, but then subsided. He was moved to skilled nursing with as many of his precious belongings as I could transfer to his room. He made jokes with the nurses, altho’ he couldn’t really swallow. He waited to see my sister who came as soon as she could. And then he died ... still the person with wit and love and good sense, but a body that he knew didn’t work anymore.

I haven’t had time to read all of the posts - so I apologize if this duplicates previous comments:  But this is yet another revisiting of the age-old question “What is more important… life span or health span?”  Reflecting on having been part of these decisions for my family and my wife’s family it becomes clear that there is no one correct decision regarding end of life care.

We as flawed humans are asked (often with little or no notice) to assume a God role with regard to the life of a loved one AND are thrust into the world of managed healthcare bureaucracies for good measure…

Blaming Conservatives is too simple - in general there is much cynicism in Washington regarding the unintended consequences of well-meaning legistlation, and somewhere along the way our little problems fall through the cracks.  We pride ourselves in being a country that has the right to keep government out of our personal and intimate experiences - yet at the same time have a high expectation that a massive inefficient government bureaucracy will be able to render a blanket judgement that is good for all and affects us all on the most personal level possible.

George C Sievers

Feb. 28, 2013, 4:03 p.m.

A very well written article. I will recommend it.

My sympathies to you and your family on the loss of your mom.

Your article says it all. I’m so glad I read it. I will pass it on to my children, who will likely be responsible for my end-of-life decisions.

My condolences to you and your family. I know it was a hard decision to make. My mother is nearing her end of life now and she has made me her medical surrogate and her durable power of attorney; signed a DNR form; and created a living will where she insists no feeding tubes or any other devices should be allowed to keep her alive if modern medicine has to resort to that. I will firmly respect those wishes.  I have heard of too many instances where hospitals ignore DNR forms and continue to keep the patient alive just to incur more costs. Knowing what I know, whatever hospital my mother ends up in is going to be read the riot act on her wishes ... and sadly, sued into right-wing hell if they attempt to ignore them.  More people should take a stand here and make their end-of-life decisions ahead of time, including wills, living trusts, powers of attorneys, DNR’s, everything, instead of leaving it to their families to have to bat clean-up. This is almost as cruel as making a decision to put your favorite pet to sleep because of the look they give you when they know it’s time and you put it off because of your lack of emotional control. Managing end-of-life starts when the loved one is alive and lucid, not when they are in a coma or on feeding tubes. The responsible individual plans ahead.  The irresponsible individual that doesn’t manage their end-time wishes is why we have politicians that advocate the “death panels” you speak of in your article.  We all need an end game. Death is going to happen whether we like it or not.

First, I am so sorry for your loss. These decisions are never easy, nor should they be. Perhaps this is a final lesson from your mother that will inform many through your article. For that we can all be grateful.

Second, I would ask you to consider how this experience should inform us about advance care planning and in particular the POLST/MOLST paradigm which attempts to specify treatment selections in advance of the actual need for those treatments, resulting in life/death decisions. Family may be involved when the advance treatment decisions are made, but not at the time treatment could have been rendered because these medical orders are to be implemented immediately and followed across all treatment settings.

It seems to me that your experience points up the need for family to be making these decisions at the time medical treatment is needed, not in advance and not before obtaining appropriate information upon which to base a decision.

I too am sorry for your loss. Difficult time.

Early in 2012 my younger sister suffered a massive heart attack. Some doctors recommended pulling the plug but one doctor advised waiting. My sister was not at the time able to breathe on her own. My siblings felt mounting pressure to let her go but that one good doctor said wait. My sister is alive today. She has had another year of enjoying life, she really enjoys life.

I live in a 55 and older community. Death is a common occurrence. I will say in the last couple of years however that many of our older residence seem to be written off by the medical community. What I mean by this is that we in the community which we live feel they have been denied or not informed about a possible life saving treatment due to their age.

It is true it seems that as one ages healthcare is required more. All I can say is as a society we should be very cautious about writing off old people. Once old people are written off who’s next?

We are all going to die that is a given. I am for a person making a decision to end their life if there is no hope. I think caring family members that must make the final call like the writer of this article does so armed with information and best advice.

I am not as trusting of hospital folks that best information is available to all.

Your story is very touching. End if life choice is one of the hardest families will face. My mother passed with cancer in 2002 after we were told it was untreatable. Treatment to slow down the cancer left her in bed all day. Was the hope for a few extra weeks at the end worth losing the quality time she could now be sharing with her children and grandchildren?

We discussed as a family options and spoke of hospice care but my mother wanted to be home with family. she didnt want strangers bathing or dressing her so all of us 5 daughters made arrangements to sit one day a week caring for her. She passed away in her own Livingroom with her children by her side in prayer. The mixed emotion of relief that she would suffer no longer and the great sadness of losing her was overwhelming.

I am greatful our family had spoken in advance about end of life wishes and did not have to make a choice when you are so overwhelmed with emotions. There are times when extending life also extends pain and we as compassionate people have to let go of those we love.

Thanks for sharing.

So sorry for your loss. My mother suffered the same oxygen deprivation when she was 29 years old. The prognosis was poor as well but after several weeks in a coma she woke up. Severe brain damage as well as some pretty bad physical disabilities. That was in 1969. She learned to talk again with speech therapy and learned to walk again with intense physical therapy. She is still alive today though it has been a struggle for my brother, me and my now deceased father to care for her.

I was only 3 when it happened so I have no memory of any medical discussions though I have poured over her charts in writing a book about these experiences. The doctors just didn’t know what to expect and were both amazed and surprised at her survival.

When my father died 6 years ago we were faced with the decision to stop life support. There was no question at his prognosis, there was none and yet it is still the most wrenching thing to be assigned that kind of power.

My condolences to you and your family for the loss of your mother.

Charlie, I’m sorry for your loss.  You made the journey with both heart and mind.  So difficult to figure everything out in the midst of final days.  Mom and Dad died in August and November of last year, 90 and 95.  Mom had a DNR. Dad was full code !  Only after the ICU doctor explained what chest compressions would do to a 95 year old’s ribs, did dad opt for a DNR. When asked, the family doctor did try to explain some of these things to mom and dad.  I wish we would have asked him to do this more often so dad and mom could have gone a bit easier.  Neither could talk at their ends.  Hospice was so helpful in educating the family about the death process.  Mom died as she lived with grace and beauty.  Dad too came to some peace.  Being an orphan at 59 is surreal.  Allow yourself a few tears every now and then.

Damiano Iocovozzi

March 3, 2013, 5:36 p.m.

I’m sorry for your loss, Mr. Ornstein.  Your article was very touching. The price of medically futile & obstinate life-saving protocols for those in their last 6 months of natural life is staggering.  Many waste their remaining good days pursuing cures or remissions on a medical fool’s errand.  Most health care professionals see that death will soon arrive based on their education & experience with deleterious, progressive & terminal illnesses at least 6 months in advance.  Even my first year nursing students can sense the inevitable, just by reading consistently lowering weight, albumin, pre-albumin levels & the changes that are evident during the remaining months.  Unfortunately, the US payment system is a fee-for-service one, based on what is ordered, even if medically futile.  A better system is single-payer which has less incentive to overtreat.  The hospice is used about a week before death in the USA but should be started at least 6 months in advance.  Most people actually do better at home with hospice & may even live longer & more comfortably. Please visit our Foundation’s web page for more information about sane choices at end of life & how to write an advance directive that will protect loved one’s from an insane & medically futile course at end of life.
http://www.soonerorlaterbook.com
Damiano Iocovozzi MSN FNP CNS
The Thomas Edwin Walls Foundation

My sympathies to you and your family, Mr Ormstein. I went through something of a similar experience when my father died at 89 a couple years ago.  I hope that your experience prompts all healthcare journalists to make it a standard that people who make a living writing about our healthcare system have to witness what patients, families, and clinicians go through. It is one thing to interview people, review data, quote Excel analyses of costs, etc; it is quite another to see the agony of choices and the fear and conflict that make choosing so difficult. There were times when I was still practicing medicine that I dragged adminstrators, case managers, and even some other docs our of their roles and brought them down to the world of day-to-day sickness and injury: I thought they had forgotten what was behind the cost data, the lab data, the path reports, and the MRI’s.

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