When it comes to treatment, talking should be the first step

Health Sciences North, with partners, organized two public forums recently on issues concerning care at the end of life. Overall, we attracted a thousand people — a lot of interest.

Here are some more facts for your consideration.

A 2014 Alberta study looked at how frail patients did after a stay in the intensive care unit (ICU). Even though most people survived initially, frailty was associated with a mortality rate of 48 per cent versus 25 percent for non-frail patients, 12 months later. Only 15 per cent of all the frail patients who lived independently prior to illness were still living independently in follow up.

Family caregivers reported a lot of stress.

A 2009 U.S. study reported even more dismal outcomes. In patients who required prolonged machine assistance with breathing (greater than 21 days) in ICU, only nine per cent were alive and lived on their own without assistance a year later.

Of their families, 74 per cent reported physicians had not discussed what to expect for the patient’s future survival, general health and care-giving needs.

When surveyed, most families expected the very same patients to survive, have no major limitations in their activities and enjoy a good quality of life.

A 2009 study sought to define the differences in the costs of health care in the final week of life for patients with advanced cancer. One group of patients had discussions about care at the end of life with their physicians. The second group had no discussions. The study also examined the patients’ quality of life in that final week.

One group of patients was asked the following questions about treatment goals.

“Do you prefer a course of treatment that focuses on extending life as much as possible, including care in the ICU, even if it meant more pain and discomfort? Or, do you wish a plan of care that focuses on relieving pain and discomfort as much as possible, even if that meant not living as long?”

Interestingly, while the two groups did not differ in survival time, patients who had end-of-life discussions had less physical distress in their final days and the costs of care were 35.7 per cent lower. Results of this study suggest that increased communication between patients and their physicians is associated with better outcomes and with less expensive care.

No matter how you look at it, talking is vital. Many patients are not aware of the precarious state of their health conditions.

Many have not thought about advance directives even when they are at high risk of bad outcomes. They think medicine is all-powerful and can cure every ill. They do not appreciate that sophisticated medical treatments have the potential to do more harm than good.

How could we do better?

Data suggests frailty can be measured in patients being admitted to the ICU. Frailty can also be measured in patients being considered for major surgery.

The intent is to provide the right information at the right time to enable the patient and family to make an informed choice about selecting the preferred treatment choice. Health Sciences North is now piloting such an approach in our pre-surgical assessment clinic.

Increasing numbers of older individuals are now considered for highly complex technological care.

So please, talk to your physicians. Ask them questions. Ask about outcomes, about the odds of living independently. Ask what they would recommend for their mothers and fathers. Then decide on your treatment goals.

Dr. Peter Zalan is president of the medical staff at Health Sciences North. His monthly column tackles issues in health care from a local perspective.