In Depth
Health
End of life issues: Preparing for the worst
Last Updated Nov. 9, 2006
By Georgie Binks
When Laura's elderly mother entered hospital earlier this year because of a minor health problem, things quickly took a turn for the worse.
"We went from having a parent who was going to be discharged from the hospital to one who was gravely ill," Laura recalls. "We were asked to give the doctors a directive on her treatment."
That directive meant the family was forced to look at what are known as 'end of life' issues — issues like appropriate treatment, the length to which the doctors should go to save or prolong a life and at what point treatments should stop.
These are the kinds of issues many Canadians are forced to make, but which few are equipped to, according to a national study by Queen's University professor of medicine Dr. Daren Heyland.
The newly released study examined the issue of resuscitation around terminally ill patients and it turned up some disturbing facts. It found, for example, that only one-third of patients had ever discussed cardiopulmonary resuscitation with their doctors.
"We found patients and families were ill-informed," Heyland said. "They don't understand the process or the outcomes, or their chances of surviving. There is poor communication with poor decision-making around it."
Laura recalled how "you don't understand all the options or all the variables involved."
"It's not just a simple question of 'Do you think someone would want to be resuscitated?' It's at what level do you think a person would want to have measures taken on their behalf. As well, you have to consider the consequences of taking the steps."
Answer the big questions
One of the suggestions Heyland makes is having a patient or family member make a value declaration.
"Doctors need to ask if you are interested in life at all costs, or if you are approached with a life-threatening situation, do you just want to receive comfort measures."
He said once you know the answers to those big questions, other little decisions are not as important.
There are three levels of care people need to know about, Heyland said. The first is full life-sustaining therapies. The second is a continuation of medical therapies, but in the event of deterioration or life-threatening complications, no heroics, resuscitation or intubation will be attempted. The third is palliative care with only comfort measures to be taken.
Laura's mother had been in good health, and even though she was elderly, end-of-life issues had never been discussed.
"As a parent ages, it's that much more difficult to bring the issue up because they are so much closer to it being a reality," Laura said. "When you're 20 or 30, you feel it will never come into play. It's really something you should address when you're younger."
One thing that bothered Laura was having end-of-life issues raised at her mother's bedside. She felt medical staff should have been more sensitive about how and where they approached the situation.
Oncologist Dr. Robert Buckman says doctors are crucial when it comes to bringing up the issue at the appropriate time and place.
Decisions may not stay the same
"You can say we need to make some 'Plan B' or 'What if' situations. How are we going to handle it if things go very badly? You can have that decision well before the time you actually need to know what is in the patient's mind. Then it doesn't feel that threatening. It's very difficult to have those decisions close to the end of life. It's easier to have them before you need them."
Decisions can also change as the patient's condition does, Heyland said.
"I had a discussion with an elderly woman recently who had just spent two weeks on a breathing machine, which was life support. She came off it today. Now she's let us know she doesn't want to go on it again if she needs it. I told her if she didn't, she would slip into a coma and she was all right with that."
One of the reasons people don't address these issues, said Heyland — especially in the case of end-stage cancer and advanced medical diseases — is that it's a coping strategy.
"It's an emotionally sensitive topic," he said. "But one of our roles as health-care providers is to provide adequate prognostic information, so people know what is up. They can choose what or what not they want to talk about."
Heyland said it's essential to have those discussions with loved ones to bring closure to life. "If you never know you are at the end of life or no one ever helps to facilitate those discussions, that's not a good way to leave this world."
It's also difficult for the family of a patient.
"It makes a huge difference knowing what the person wants," Buckman said, "knowing that you actually complied or carried out their wishes."
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