What Matters Most and What Control do You Want Over Your End-of-Life Choices?
Anna Toane
Physician Orders for Life-Sustaining Treatment, Do Not Resuscitate and Other End-Of-Life Decisions
There are several considerations when it comes to end-of-life care and here at Eirene we’ve made it our mission to unpack difficult conversations around end-of-life planning and help families navigate the complexities of death care—one such area is that of PhysicianOrders for Life-Sustaining Treatment (POLST) and Do Not Resuscitate (DNR). “When you have a serious illness or frailty it is very important to make sure your loved ones and doctors know what kinds of medical treatment you want, and do not want. The POLST program [and other medical directives were] developed to help you achieve this goal.”
Before we dive in, let’s review what each of those terms actually mean:
- POLST: a form that gives seriously-ill patients more control over their end-of-life care, including medical treatment, extraordinary measures (such as a ventilator or feeding tube) and CPR
- Voluntary form that turns your wishes for treatment into a medical order
- It is meant for people with a serious illness, such as advanced heart disease, advanced lung disease, or cancer that has spread. It is also for people who are older and frail and might not want all medical treatments
- DNR: a signed document instructs medical professionals not to perform CPR (cardiopulmonary resuscitation) if your heart or breathing stops
- To access the form in Ontario, click here and download the form
*Important Note: health care (medicare) is the responsibility of provincial and territorial governments, so the laws, regulations and directives etc. will differ by province and territory.
Despite conversations becoming more common around end-of-life care, a national poll revealed“a staggering 86% of Canadians had not heard of advance care planning.” It’s our belief that a better death becomes integral to a good life. One school of thought is that a province-wide standard would be helpful “so that it’s not unusual to talk about advance care planning with patients when they’re healthy, but it becomes normal.” You can learn more about Advanced Care Plans (ACP) in our previous blog post here.
It’s important to note the POLST form does not replace an advance care plan, though does guide “treatment decisions if you later lose the ability to speak for yourself” and provides “more control over the treatments you do or do not want to receive in a medical emergency,” it’s also “completed with a Doctor.”
To understand the difference between the two, we’ve included the below image courtesy of The Oregon POLST.
*Once again, there are likely to be nuances by province and territory and the governing body for POLST is a US-based organization, which should be kept in mind.
A High Level Overview
In the US, a majority of hospice staff interviewed believe the POLST is useful at preventing unwanted resuscitation (97%) and at initiating conversations about treatment preferences (96%). Preferences for treatment limitations were respected in 98% of cases and no one received unwanted cardiopulmonary resuscitation (CPR), intubation, intensive care, or feeding tubes.
A majority of hospice patients (78%) with do-not-resuscitate (DNR) orders wanted more than the lowest level of treatment in at least one other category such as antibiotics or hospitalization.
For additional information on frequently asked questions visit POLST FAQs.
A few helpful considerations (summarized):
Should I have a POLST form? POLST is for those with a serious illness (such as advanced heart disease, advanced lung disease or cancer that has spread), or for those who might be older and frail and who might not want to go to the intensive care unit (ICU).
How do I access a POLST form? The POLST form is a medical order, so you should get the form from your doctor’s office (and if your doctor does not have POLST forms available, they can contact the POLST program to have one sent to their office in advance of your appointment).
What happens in an emergency? To ensure your “POLST form is found and known in a time of emergency, your information is entered into the Oregon POLST Registry—unless you choose not to participate and have checked the opt-out box on the form.”
What if I change my mind? POLST records your wishes for medical treatment now, in your present state of health. If your wishes change, talk with your doctor as soon as possible so that a new POLST can be completed and if you've opted into the Registry the new copy also needs to be sent there.
POLST and Palliative Care
The POLST process can be part of a palliative care plan (focuses on helping patients improve quality of life, helping alleviate symptoms and understand choices for medical treatment).
DNR in Ontario: How does Ontario's system of issuing DNRs differ from other provinces?
JN: I think people have misconceptions. The DNR does come with a serial number on it, but that's because a physician must issue it or sign it — or a regulated health professional, a nurse, can sign as well. So you can go on the web, you can see what a DNR looks like but you couldn't download it and print it yourself because they want to ensure it's a medical confirmation. So that's why they're serial numbered.
A national registry really wouldn't do much because paramedics and firefighters, if they're in an accident scene, if they're in your home, they do not have time to look for [one]. Even patients that are home with a life-limiting illness will have a binder or an order form and they will be told "put it on your fridge" because that's where paramedics will look first, they'll look on the fridge.
Quality of Life: options and decision-making at end-of-life
Many contemplate POLST and DNR when considering the quality of life they want to maintain. For example, if your breathing stops and you need to be intubated there is growing research that states “quality of life and life satisfaction are severely impaired in patients with long-term invasive ventilation following ICU treatment and unsuccessful weaning.” What’s more, wanting a DNR is
[o]ften it’s because if someone is quite ill—or if they've had a very massive physical injury and they are resuscitated back—they are often worried that they would be put on life support; artificially kept alive when they don't want to be kept alive, where they would have no quality of life. And so the feeling is, if they have a do not resuscitate order they would be preempting that. They would have more control over what their existence would be like afterwards. Resuscitation can be quite an invasive procedure. It involves a lot of chest compressions, a lot of very physical activity. So if you are of failing health and you're kind of frail, it can be quite harmful to do resuscitation.
It’s not like television, they don't just pop up again. [There could be] broken bones ... there could be some brain damage because of lack of oxygen. I think it has a bit of a cachet that automatically means you would be fine.
Often people feel a do not resuscitate order is like killing someone, but it's not. It's actually preventing further injury.
If you are approaching end-of-life, or caring for someone who is, “there are a number of options for care under Canada's current laws. Learn about these options and how you can help make sure that treatment is consistent with your final requests, or those of your loved one.”
What’s most important is that you make end-of-life decisions that are right for you and your loved ones. This involves being educated and informed around your options and taking the necessary legal actions to ensure your wishes are respected and fulfilled. Dying the way each of us see fit is a human right that should be granted to everyone.
We’re here to support you and have made it our mission to unpack difficult conversations around end-of-life planning and navigating the complexities of death care.
To learn more and access additional resources visit www.eirene.ca.
