The distraught adult son and daughter are meeting with the physician charged with caring for their mother, a 67-year-old with metastasized cancer, a new infection and low oxygen levels. She is breathing on a ventilator.
They are meeting to decide whether their mother, whose health has not improved for weeks, should stay in the intensive care unit or if she should be moved to palliative care, where she could live out her final days more comfortably.
From a medical standpoint, it is clear the 67-year-old has reached the end of her natural life. But her loved ones think she could recover, if only her health-care team would work harder.
The physician has to navigate through the conversation without storming out or losing her temper. The woman’s children aren’t making that easy.
“I don’t know what you people are doing,” says the son. “She just seems to be getting worse and it’s only because of the care that she’s not getting.”
“You guys want the bed. It’s clear you want the bed because my mother’s too old,” the daughter screams at the doctor. “It’s like if you’re over the age of 65 in these goddamn places … your life is over.”
The good news is that, on this particular day, this scenario is not real. The son and daughter are actors who are part of a day-long session designed to teach training physicians how to handle the delicate, wrenching, end-of-life conversations with family members.
Designed by James Downar, a critical care and palliative care physician at Toronto General Hospital, the unique program is part of a growing push among members of the medical community to revamp the way doctors, patients and families approach the end-of-life process.
Many patients die uncomfortable, sometimes painful, deaths in the intensive care unit when they could have benefited from the support of palliative care. The reluctance to confront the inevitability of death and continuing to pursue aggressive treatment can do unnecessary harm to patients and relatives during what is already an extremely difficult period, according to Dr. Downar.
“It’s a bad thing to die in the ICU,” he said. “No one’s winning when this happens.”
The core issue is that family members often don’t recognize when further intervention is futile, that a family member is not going to improve or enjoy real quality of life ever again. And because few people express their end-of-life wishes in advance, many families push for all-out aggressive treatment for their loved one, even if the odds are not good.
Dr. Downar would like that to change.
That’s part of the reason he initiated the program to help doctors-in-training approach end-of-life conversations with family members. Now in its sixth year, the program puts doctors in the last years of their sub-specialty training in realistic scenarios with actors who play the part of distressed family members. The goal is to improve how physicians interact with relatives of critically ill patients and to help them make informed decisions about the end of life.
End-of-life discussions are hard on families, but also on doctors and other health professionals. It is challenging to convey sensitively that a person is dying; families may misinterpret a doctor’s prognosis or fail to understand the gravity of the situation. Conversations can quickly become inflamed.
Dr. Downar’s program emphasizes reading body language and verbal cues, avoiding complicated medical jargon and taking however long is necessary to help family members understand a situation as well as the possible options. Doctors learn that using open-ended questions and “active listening,” such as leaning forward and nodding, can help diffuse tension and put everyone on the same page.
There is growing momentum among critical and palliative specialists in Canada to make end-of-life discussions a priority. Dr. Downar conceived of the idea for the training program when he was still in training and saw firsthand how bad communication reduces the quality of a patient’s death
“All of us as trainees go through this, where you have a conversation that doesn’t go well and families get upset and people cry and you walk out of that room feeling like you just want to die. You would give anything not to feel that way again,” Dr. Downar said.
The better approach, to Dr. Downar and many other critical and palliative care specialists, is to equip physicians with the skills to compassionately convey the reality of the situation to family members. It’s not about giving up on the patient. It’s about understanding that palliative care, where patients can be comfortable, alert and able to communicate, is an excellent option.
Palliative care shifts the focus from curing a disease to managing and treating symptoms. Patients can receive medication, blood transfusions, even chemotherapy. The aim is to minimize suffering.
If more people understood what the option of palliative care really means, they would embrace the choice, Dr. Downar said. “Most people find out about it far too late,” he said.
Kali Barrett, a critical care fellow at the University of Toronto who is training at academic teaching hospitals associated with the school, faces difficult end-of-life conversations with families all the time. She recalls one family meeting that ended with screaming and tears. It’s an experience she will never forget, she says.
“It was a horrible situation and I was a mess,” said Dr. Barrett, one of the physicians who took part last week in Dr. Downar’s training program. “I actually felt I was doing good medical care, but because I could not communicate with this family, I felt like I was a horrible doctor.”
In another situation, a patient was dying and she was able to have compassionate conversation with the family and facilitate a “beautiful death,” with relatives gathered at the bedside.
“I knew even though the outcome was bad, the process was good,” she said.