The Business of Dying: Patients in Peril is a series of articles published by the Washington Post this year. Most the articles have been about hospice care and the quality of care they provide, but in Part 6, the title was ‘Warehouses for the dying’: Are we prolonging life or prolonging death? The authors bring to our attention how patients in ICU’s and the medical staff who care for them suffer from “the overuse of aggressive end-of-life care”.
Most of us, when asked how we picture our passing, will say that we hope we’ll just go to sleep one day and not wake up. Unfortunately the currently reality is that too many people will spend their final days in the hospital, hooked up to machines and alone.
Because of communication breakdowns at various points along the way, when patients are unable to express their wishes for how they’d like to be treated and what a meaningful recovery means to them, they are at the mercy of well-meaning but misinformed family who speak for them. Family members ask the doctors to “do everything” without really understanding what that means or how it will impact the patient. What it can mean is aggressive, painful treatment that can cause intense suffering for the patient who is unable to let anyone know how they’re feeling. In articles I’ve read on this subject, doctors give the example of how families don’t understand how damaging to the body CPR can be because their only reference is what they see in the movies with patients waking up and walking away unharmed. The reality is that broken ribs and internal bleeding are common, particularly in the elderly, resulting in more pain and further issues to recover from.
The Washington Post article as well as this Canadian article, Doctors and nurses working with critically ill patients suffer moral distress, research finds both describe how upsetting it is for doctors and nurses to have to provide aggressive treatment that prolongs the patient’s time in the ICU when there is no hope for recovery.
Family members speaking on behalf of the patient need the doctors to help them make informed choices. However, doctors aren’t paid to take the time to have long discussions with families (although the AMA has submitted a request to Medicare to cover end-of-life conversations, and some health insurance companies are beginning to reimburse doctors, as discussed in an August 30, 2014 article in the NY Times, Coverage for End-of-Life Talks Gaining Ground). When the patient is in crisis, there may not be time to fully explain all the options so that there is a true understanding of the full outcome. Canadian researchers have learned that doctors frequently give false hope and many patients are not even told that they are dying, resulting in aggressive treatment despite the likely outcome (see Windsor Star article).
For the sake of the patient, the family needs to know the truth, even if it’s not what they want to hear. If the family knew how much their loved one would suffer when doctors “do everything possible”, at their request, they might agree to minimal care. Helping the patient to be comfortable and pain-free, in pleasant home-like surroundings, will help them die peacefully and will also be less stressful for the patient, family and medical staff.
It’s thanks to modern medicine and technology that we’re able to prolong life and people can recover from serious illness and injuries to go on to live a life that has meaning to them. Unfortunately it also leaves us with the predicament of having to decide for people we love whether they live or die. Because many of us have to make these decisions, it’s more important than ever to make clear our own personal definition of living, keeping in mind that this definition can change over time as our circumstances change. When you witness a loved one on life support it may change your perspective on the treatment you want for yourself.
Patients are people, too!
We should talk about our wishes before a health crisis occurs. The Conversation Project is one website where you can get more information about how to talk about the end-of-life care that you want.
I hope you’ll work on your own Advance Directive, if you haven’t done so already. There’s lots of information on the internet to work with, such as this website, As You Wish (mentioned in the Washington Post article) and National Healthcare Decisions Day.