The elderly man couldn’t breathe and he didn’t know why.
He wore an oxygen mask when the EMTs wheeled him in. His lungs were too diseased for the mask to help much, and he was too confused to follow questions from the team in the emergency room at Boston’s Brigham and Women’s Hospital.
And so, while the man’s adult daughter watched in anguish, he wheezed and hyperventilated in terror. His ER doctor, Ziad Obermeyer, figured the man might live two more hours without aggressive intervention, so he asked the daughter if her father would want to be put on a respirator. She didn’t know.
Obermeyer had at least 10 patients waiting for him, some of them acutely ill, and he’d been on duty for hours. This patient was a stranger to him, as were the relatives.
It’s a surprisingly common theme in American emergency rooms. Family members arrive with patients who are verging on death but can’t articulate whether they want potentially life-saving medical procedures that might also carry the risk of debilitating consequences. They have never had the talk.
Obermeyer, it turns out, is developing a novel approach so that patients — and their clinicians — avoid that kind of scenario. The idea is to help doctors know when patients have begun a decline toward death and should have a conversation about end-of-life choices — preferably before they reach the ER.
“It’s an incredibly hard place to have that conversation,” Obermeyer said of the ER. “You have about 10 minutes to make a really important decision, and you’re doing it in a noisy place where the doctor has 15 other patients they’re worried about.”
Doctors typically broach the subject of patients’ end-of life choices an average of 33 days before they die, and often when they’re in crisis, according to research by Dr. Jennifer Mack, a pediatric oncologist at the Dana-Farber Cancer Institute and Boston Children’s Hospital.
Sometimes doctors put off those conversations because neither they nor their patients want to give up hope. Other times, however, doctors don’t engage in the conversations simply because they don’t realize death is so near for their patients.
Oncologists, cardiologists, and other specialists can often predict a patient’s rate of decline based on a specific disease, Obermeyer said. But patients, particularly those who are elderly, often suffer from more than one serious illness that make it more difficult to predict when they’re near death. So a pulmonologist might treat someone’s pneumonia, for instance, without recognizing it signals a broader decline.
Obermeyer, along with Harvard economics professor Sendhil Mullainathan, wants to help clinicians better determine when patients begin their decline. And when patients do deteriorate, the clinicians can begin to grapple with questions about the care the patients want to receive.
Even patients who have pondered those questions with their families or physicians earlier in their lives might come to the issue with new perspectives when confronted with the realities of the choices they face.
For now, Obermeyer and Mullainathan are mining millions of electronic health records that detail patient illnesses, treatments, and outcomes in the final years of life. They believe that the patterns they detect will allow them to better predict the future for other patients.
The idea was all-but-unthinkable a decade ago, but advances in Big Data (the ability to store massive amounts of data cheaply) and “machine learning” (the ability to mine that data for intelligence) have put this wisdom within reach.
Three years ago, Obermeyer received a National Institutes of Health grant designed to assist “exceptionally creative scientists who propose highly innovative approaches to major challenges in biomedical research.”
He said his research has already yielded promising results, with published data coming soon. The next step is to establish a system to alert doctors that a patient’s condition might warrant an end-of-life conversation.
“I imagine the man I saw would’ve had a super-high probability of dying, based on the algorithms we’re using now,” Obermeyer said. “And I think if he’d been brought to someone’s attention, whether his primary care doctor or the person taking care of him in the hospital at an earlier point, I think things would’ve gone better.”
In the case of the man Obermeyer saw in the ER, the patient’s death went as well as it could have. Obermeyer spoke by phone to the man’s son, who had the authority to make medical decisions.
Obermeyer explained the situation: Many elderly patients need a tracheostomy after being removed from a ventilator, and patients with tracheostomies often have a hard time eating, so they need a feeding tube as well. What Obermeyer also knew, but didn’t say, is that of every 100 Medicare patients who are on ventilators for more than three days, fewer than 10 will go home, and a vast majority will end up in long-term care facilities because of complications.
The son decided against a ventilator.
By the time the son and another sister arrived, the medical team had given the man morphine to relax his breathing. “The morphine took the edge off the situation in the room,” he said. “He could hold his children’s hand and they could talk to him.”
The man died not long after. Later, the son shook Obermeyer’s hand and said it was the best thing for the father.
“It’s hard to describe how I felt,” Obermeyer said. “On the one hand I was glad we hadn’t put in a breathing tube. But it’s hard to classify that as a good death.”
Retired Hopspice nurse. Often I have felt doctors felt they were letting the patient t down by not trying everything. Or they knew death was near but didn’t know how to handle the persons emotional reaction. It was not uncommon for a doctor to refer someone to hospice without telling him he was terminal before hand. Lots of education needed so doctors come to feel as successful when they ease a patient through his dying as when they cure him. When they understand death is part of the human experience not the enemy.
Wouldn’t it be unethical to refer a patient to hospice without telling him/her that he/she has a terminal condition? Wouldn’t most people (or their loved ones) understand the significance of a hospice referral and demand more information, if not another opinion, before acting on a hospice referral? And people should also know that they are never obligated to work with a hospice that a physician (or anyone else) refers them to. Hospices vary widely in quality and philosophy. It behooves everyone to choose a hospice that meshes with their own values and religious (or lack of) beliefs. It’s also important to realize that once hospice care begins, a patient no longer receives treatment from any other of his/her own physicians, or other treatment that may be helpful, like physical, occupational, or speech therapy. Not that hospice care isn’t the right thing at the right time; it often is. Just make darned sure what you give up by accepting it.
My father had Alzheimer’s and heart/lung disease. I thought I was giving him a quality of life, and I was, right up to the point where he was just too tired and weak. And still I did the back and forth to the doctors and hospital. I didn’t realize, at first, that all the back and forth was wearing him out…it just became routine. Finally, his doctor pulled me out of the room and put it to me, bluntly. Did I realize what I was doing? Didn’t I think that dad deserved to have a little peace before he died? Did I really want him to continue suffering?
It was so hard to let go. I felt I was letting him down because I couldn’t figure out a way to heal his mind and tired body. Was I being selfish? Did I want him gone so he would not be a “burden ” on me? He was never a burden…but it was hard working full time and going home to care for him the rest of the day AND night. I finally put my ego aside and thought things over. Even with hired help, I was up checking on them during the night to ensure they changed him and turned him so he wouldn’t get bed sores or chafing. Was I dragging him along…without asking him what he wanted? So many thoughts rolling around in my head. I realized that the doctor wasn’t being cold hearted and unfeeling…he was being compassionate. It was hard to watch him die so slowly, but I didn’t want him to suffer. I thank God for my faith in Him. Because if God hadn’t been with me, I would not have gotten through my dad’s death. I’m glad the doctor said what he did, but there will always be that little niggling thought that maybe I gave up before my dad. Someday, I hope to find out what my dad wanted.
Good for your for being able to look a bit deeper and explore the reasons for your decision. And good for you for interpreting that doctor’s blunt questions and comments as coming from a place of compassion! I am guessing the message could have been interpreted much differently given its “blunt” delivery. You are bang on – there are times when prolonging life is only prolonging the suffering that comes before the inevitable… Doctors know that, but it can be hard for patients and families to understand that. We all want the best for our loved ones after all! It is difficult to see how allowing death to occur can be the best choice. If I may share a bit of insight… Perhaps you already know the answer and do not need to ask that question to your father at all – ask yourself, would he want to suffer if he knew death was inevitable and that any quality of life gained by medical intervention would likely be very poor? It’s a legitimate question, some might want to hold on til the very end for one reason or another, in spite of the pain, the suffering and futility of medical intervention. I do think most of us know our loved ones enough to consider that question for them and make the right call. May this knowledge bring you peace.
As a family we had always discussed what we would want if we were in that situation. When the time came for my mother at 92, I was able to carry out her wishes with no guilt or feelings of should or shouldn’t. Even knowing it was what she had wanted and the right thing to do, her passing did not make it any easier on lose left behind, Grief does not exist were love once was, but knowing she was in control of what she wanted it gave us peace in the decision and situation.
When the patient
is in the last year of life,
there should be a written end-of-life plan.
Here is how I suggest
we decide the time has come:
We ask the doctor in charge
of this patient’s medical care:
“Would you be surprised
if this patient were to die
in the next 12 months?”
If the doctor says “no”,
then it is time to write
an end-of-life medical plan.
If by some chance,
the patient lives more than one year,
then revise the written plan
as might be needed by any changes
in the medical condition of the patient.
And let that be the end-of-life plan
for the next year.
One of those years,
it will be needed.
Here is one very comprehensive format
for writing an end-of-life medical plan:
This form (the ELMO form referred to in the last sentence) is extremely helpful. I think the Globe should do a story on the form itself, and why it is better than a DNR or MOLST.
Thank you, Dr. Obermeyer for your caring and compassion. I’ve spent most of my professional career urging patient, families AND physicians to accept death as a normal life stage – and, most importantly, to assist patients die with grace and dignity.
When its time to go – its time to go. We don’t leave until we are ready or it’s our time. Those who suffer, are those loved ones left behind.
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