When the right to live is neglected by hospitals

Opinion

Hey there, time traveller!
This article was published 25/03/2017 (2187 days ago), so information in it may no longer be current.

Of course we all know about assisted suicide and the right to die.

But what about the other right to die — the signing of a Do Not Resuscitate (DNR) order, that permits doctors to abandon so-called heroic efforts to save your life?

Then there’s the opposite option. What might be termed the right to keep living; even when death makes its first attempts to take you. It was a phone call from an angry neighbour friend that compelled me to begin considering the topic most of us would rather not think about. He was enraged by his perception of how a hospital that’s part of the Winnipeg Regional Health Authority was treating his 83-year-old father-in-law. The Charleswood senior was terminally ill with advanced lung cancer and in respiratory distress when he was rushed to hospital on March 15, exactly two months after his wife died. What disturbed the son-in-law, though, was a sense that the health-care system is in a hurry to get rid of seniors such as his father-in-law because they’re old and sick and it’s time to move on so others can move into their hospital beds, which are much in demand. The caller’s wife feels similarly.

“It kind of seemed like that,” she said over the phone Thursday from her father’s hospital room.

The daughter — I’ll call her Donna — said as soon as she arrived in the ER with her dad, she felt pressure from doctors to have a Do Not Resuscitate Order (DNR) in place, even though, as the WRHA later told me, “a DNR order is not required for a palliative patient.” That’s because, as the WRHA statement added, “palliative patients generally opt for comfort care, which is care intended to manage pain and soothe a patient who is dying.”

Yet, Donna said other doctors she’s encountered in the hospital also wanted her to sign a DNR order. Donna’s sister felt the pressure even earlier, when an ambulance arrived at the home the sister shares with the dad.

“They said to her, ‘Do you want us to resuscitate him?’ “ Donna recounted. “Do you want us to bring him back?’ And she said, ‘Yeah. He’s just having breathing issues. He’s not dying.’ “

Donna said the paramedic — who later apologized — was “yelling” at her sister, telling her there should be a health-care directive in place for her father because they needed to know what to do. So her sister told the paramedic what to do.

“Help him breathe.”

On the way to the hospital, Donna said she and her sister shared the same fear of what could be ahead for their father.

“We were terrified that they weren’t going to do what they can to make him feel better.”

As it turned out, they had reason to be concerned. Around midnight on the day after their father’s fluid-filled lungs were mechanically cleared, a nurse phoned Donna at home.

“The nurse said, ‘Your dad, we don’t think he’s going to make it. I called you so you could comfort him in his last hours.’ “

When the sisters got there, it turned out the problem was no one had ordered his meds.

“His last hours?” Donna said in exasperation. “He’s supposed to have comfort care. He’s supposed to have medical treatment. We thought, ‘What if he didn’t have family? What would they have done?’ He would have died.”

Beyond being upset about doctors asking her to have her dad’s DNR signed, Donna senses something else from them.

“They look at us like we’re in denial. I’m not in denial. I’ve been through this before.”

At her mother’s request, Donna waited until just before the end to sign a DNR for her.

“I know exactly what we’re doing,” she said. “My dad wants to live.”

Donna’s father is far from alone in not wanting to sign a DNR. Some patients opt for what’s known as a Full Code (FC) order, which means they want aggressive life-saving measures such as CPR. An academic Canadian study published online in 2011 attempted to get some insight on that by doing interviews with more than 40 medical patients from three Toronto hospitals who had recently had discussions with doctors about end of life options

“DNR patients expressed a desire to avoid resuscitation in order to lessen the emotional burden on family members.” the study found. “FC participants requested resuscitation in hope of remaining with family members.”

And then there was this: “Only DNR patients cited societal considerations. Some were concerned about the burden their resuscitation and life support would place on health-care workers. Others were concerned about the financial costs to society as a whole.”

About a week ago, a doctor arrived on her father’s ward, who made Donna feel differently about her hospital experience. Rather than more pressure, he brought a sense of peace.

“He said, ‘Listen, we know the long-term prognosis. But for sure we can manage symptoms and medically treat him for pneumonia or a chest infection. And he can be comfortable. Clearly he’s not ready to go. He’s walking. He’s talking. He makes jokes. We’ll treat him.’ ”

“I was crying,” Donna recalled. “I said, ‘Thank you so much because that’s all we wanted. You’re looking at him as a human being. You have compassion and you’re on the same page as us.’ ”

A page, as she suggested, that doesn’t have a DNR order to be signed. Not yet because her father isn’t ready to go.

“Now you should see him,” Donna said. “He’s looking great. He doesn’t look like he’s at death’s door. He’s planning Easter.”

The celebration of the Resurrection. How perfect.

So, what does the WRHA have to say about all of this? Lori Lamont, vice-president and chief nursing officer, responded to my request for comment via email.

“We recognize that this is a very difficult time for the family you’ve spoken to,” Lamont’s statement began. “We understand that conversations they’ve had with staff about advanced care planning have been difficult. While delicate, such conversations are necessary and we make every effort to prepare our staff to have them; which they do, often. Families, on the other hand, do not face these circumstances frequently. By the time they arrive at a hospital with a seriously ill loved one who is unable to speak for themselves, families are rarely prepared to deal with the uncertainty and weight of such personal decisions. This is what makes Advance Care Planning so very important.”

That’s easy to say and to recommend, of course. But, in the end, there might be only one decision that’s more difficult in life than signing a Do Not Resuscitate order about your own death.

Being a loved one who has to sign it for you.

gordon.sinclair@freepress.mb.ca