Living With Dying articles
‘Do No Harm’ Can Be Confusing In The Face Of Death
By Leah Carey
Jan. 31, 2017
Today we continue our conversation with the Northeast Kingdom’s best-known palliative care team, Dr. Mary Ready and Dr. Joyce Dobbertin of Northeastern Vermont Regional Hospital.
They have both had profound personal experiences that instilled in them a passion for end-of-life care (see this week’s online extra for those stories). They also have both had experiences of bad “saves” that cause them to question the wisdom of some extreme life-saving measures.
When death is preferable to the alternative
One night while she was a med student, Ready was on the hospital floor when a 13-year-old girl came in with shortness of breath. Things went downhill quickly, but the girl’s family were Bosnian refugees and the language barrier prevented the medical staff from talking with them during the crisis.
“Probably 15 people were working on her. They’re cutting lines to put in her femoral, they’re putting IVs in her bones,” Ready remembered. “She starts foaming at the mouth, all of this edema … I’m crying, ‘Can’t we just leave her alone? Can’t we just leave her alone? She’s dead!’ And my friend is saying, ‘No, no, they’re trying! We can get her heart going.’”
The team did get her heart started, but the girl had been without blood flow to her brain for about an hour.
The girl died later that night. The next morning, Ready talked with a social worker who had finally been able to speak with the family through an interpreter.
“What they found out was that the whole time we were trying to save this girl, the family was saying, ‘She’s dead. Stop experimenting on her. We know what dead looks like. We’re from Bosnia. Leave her alone. Stop experimenting on our daughter!’”
Teaching today’s medical students about “bad saves”
Dobbertin hosts medical students from Dartmouth and the University of Vermont for rotations. During their time with her, she always takes them to meet two people at The Pines Rehabilitation and Health Center in St. Johnsbury.
“One is a man that we ‘saved,’” she said. “His brain is shot. He can’t move. He’s been there now for a decade.”
With an edge of bitterness in her voice she said, “Wasn’t that a ‘great save’? I want them to meet him so that they can understand that codes, even if you get their heart going, doesn’t mean that they’re alive.”
A second patient is now 60 and has been there since a car accident 35 years ago. “Getting their heart going doesn’t mean that you’ve done a good thing,” Dobbertin said.
Both Ready and Dobbertin make a distinction between starting a person’s heart and saving their life. It’s a dichotomy that sometimes can put them at odds with the bureaucracy of the health care system.
“Some families will get angry or say that you went beyond what their father or mother wanted,” Ready said. “But you don’t get in trouble for doing too much. It is a kind of courage for us to say no.”
“I wish there were people getting in trouble for doing too much because it’s inhumane, some of the things that happen to our patients,” Dobbertin agreed.
“It has something to do with the Hippocratic Oath – do no harm,” Ready continued. “And people think that death is harm. But I always say to people, ‘Death is not always the worst thing.’ Treatment can be worse than death.”
Why aren’t you doing anything?
Of course, sometimes it’s hard for the family to watch doctors not taking extreme measures.
Dobbertin recalled another patient, an otherwise healthy man in his early 90s, who had a perforation in his bowels. She had a frank conversation with him about the two options: immediate surgery or a fairly quick death. He chose the latter.
“He was very clear. He said, ‘I do not want surgery … That is my wish.’ I said, ‘I will honor that wish.’”
She promised to make the experience as painless as possible and he thanked her. It wasn’t long before he was in a coma.
While the patient was at peace with what was happening, it was harder on the family members who were going to be left behind.
“The grandson said, ‘Well what are you doing?’” Dobbertin said. “And I said, ‘We’re taking care of your grandfather.’” He said, ‘But what are you DOING? You’re not DOING anything!’”
The grandson continued to plead for Dobbertin to take action.
“I said, ‘We are doing a lot for him. We’re honoring his wishes. We’re giving him pain medication. We’re helping him to not be anxious. And he’s going to die soon,’” she said. “Finally the tears flowed … It’s just so beautiful to watch people come together.”
Involving the family
Both doctors also have stories of how involving family members in end-of-life decisions can help everyone feel more at peace with what is happening.
Recently Dobbertin was called in to consult on a case in the ICU.
“I walked in and I didn’t give my opinion or advice. I just asked each individual family member what they thought was happening,” she said.
The patient was unable to breathe effectively on his own, so he had equipment strapped to his face similar to the CPAP machine that people with sleep apnea use.
“I said, ‘Has anybody here ever had this machine?’ Lots of people have had it,” Dobbertin said.
When thinking about it from that point of view, one family member became adamant. “This is so uncomfortable! I hated it! I had to give the machine back, I couldn’t tolerate it. They had to give me drugs to make it more comfortable. I couldn’t do it.”
Hearing that from one of their own got the whole family on the same page quickly. “Then the family was like, ‘Well let’s get that off of him! We don’t want that! We want comfort,” Dobbertin said.
“It feels very empowering to me to empower other people,” said Ready. “I feel like we’re the moms who come and tuck them in.”
Death is boring
The dying person’s loved ones may feel like the death process is a crisis, but Dobbertin said that for the patient it is very different.
“Dying can be very boring,” she said.
She described times when the dying person would stir up drama within the family, leaving everyone else “aghast.” But Dobbertin sees something positive in that action. “Dying is really boring, so it’s good to have a little drama here and there!”
Dobbertin remembers a member of her extended family who was dying of breast cancer and chose a novel way to cut the boredom.
“She got married 14 days before she died,” Dobbertin said. “She said, ‘I’d much rather be talking to people about my wedding, and planning my wedding with people, than them sitting around and watching me die.’”
I am particularly struck by Drs. Ready and Dobbertin’s assertion that doctors will rarely get in trouble for doing “too much,” because the system is set up to do everything.
“It is a kind of courage for us to say no,” Ready said.
“Inhumane,” Dobbertin said.
They referenced the Hippocratic Oath to “do no harm.”
The question, it appears, is: who decides what harm is?
It reminds me of the conversation I had with Dr. John Koella, a hospitalist at Northeastern Vermont Regional Hospital (you can find that interview in parts 16 and 17 of this series.)
Often I have far more material from these interviews than there is space to print, and that was the case with Dr. Koella. In an unpublished piece of the interview, Koella talked about how in the 1970s, cardiac care was not as advanced as it is now. When people had heart attacks, especially older people, they died.
“People would have gone, ohmygosh, that’s too bad, Grandpa died from a heart attack at 87. And that would be acceptable,” Koella said. “Then we got better at saving people’s lives.”
In the 80s, cardiac care took significant steps forward, but the law and medical ethics hadn’t caught up. “Before we had hospice, it was horrible,” Koella said.
During that time, 87-year-old Grandpa came into the emergency room with a heart attack and the staff was compelled by law to do everything in their power to save him.
“He’s got a 3 percent chance of survival. What are we doing? We’re going to pound on his chest and intubate him and break all these ribs and do all this crazy stuff – shock him – this is nuts,” Koella said. But they had to do it. “We all worried about getting sued.”
During that time, doctors developed their own way around the system: “slow codes.”
It happened in unspoken agreements. They would go through the motions of a code, but they wouldn’t take extreme actions that they knew had little to no hope of affecting a positive outcome.
“If we have a 92-year-old who’s a skinny little lady, we’re absolutely not going to break her ribs,” he said. “There was no documentation that we as a group agreed to the concept of the slow code … Ten years ago, this person would have died. Heaven be it for me to decide that, because we have better technology, we’re going to make a mess with a 3 percent chance of you even pulling through. And even if you pull through, there’s a 1 percent chance of going back to a normal life and having a normal brain.”
Now, in the time of hospice and advanced care directives, laws have begun to catch up with technology. Doctors are no longer forced to play out this charade on a regular basis in order to keep their jobs and their hearts intact.
But we haven’t found a happy medium yet if doctors feel “it takes courage” to not break ribs and perform electric shock on patients who are unlikely to have a positive outcome.
We still have some work to do on bringing our technology and our ethics into alignment if we truly want to “do no harm.”