Having end of life conversations shouldn’t be alien to Ontarians

It was the mid 80’s and let’s face it North America was obsessed with aliens. To be fair, Close Encounters may have set the stage in the early ’70s but from Star Wars, Star Trek and ET we couldn’t get enough of the silver screen portrayals of freaky to furry alien life forms.

It went so far that we invited these beings from another world into our living rooms, hi ALF. One movie to come from this obsession was the film Cocoon. In Cocoon a group of elderly discover a fountain of youth. Not the fountain of youth of Ponce De Leon. Actually, it was less of a fountain and more of a pool that housed rock encased alien life forms in a state of suspended animation.

Okay, the only similarity to Ponce’s adventure and the elderly cast of Cocoon was that it all took place in Florida. Regardless, Cocoon is a tender fantasy about the challenges associated with aging and the gift of youth. Sadly, Ontarians face a harsher reality. With an aging population many families watch loved ones slip away. In some cases this loss can occur within hospital settings with the patient attached to machines. This particular ending can be avoided. Currently there is a digital divide between primary care and hospital settings. Although both settings are becoming more electronic, they still do not communicate effectively.

During the late stages of life electronic coordination is critical. There are many difficult decisions and conversations that are needed. Without the conversation and digital exchange of information the result can see these discussions forced solely upon family members as a result of emergent situations.

The need for digital coordination:

One key challenge facin the effective end of life coordination is a lack of clear ownership. Ultimately the patient must own the decisions associated to their end of life care. However, expecting patients to know where to begin, whom to talk to or to be proactive is not realistic. Conversations about deteriorating health and its implications are difficult. It is a conversation we all avoid. The following graphic illustrates how Ontarians are not having these important conversations.


Ontario is encouraging Canadians to start the conversation by completing an advanced care plan. An advanced care plan provides a frame work to have the difficult conversations we are avoiding today. The resources available are available online: Advanced Care Plan Form.

The challenge: whether patients complete an Advanced Care Plan, ACP, online, or with a healthcare institution. The result is the same. A physical artifact that the patient, or patient’s circle of care, need to carry and present to healthcare providers when the need arises. This seems counter intuitive.

When discussing electronic ACPs with a patient panel a few key messages were loud and clear:

  • Patients felt this conversation would have been spared their families stress and grief.
  • Patients felt this conversation should be had with their primary care physician.

The latter is an important point. It points to where patients’ feel this conversation should be owned. The tool kit really places the burden on the patient themselves. But the data shows that Ontarians are not proactive with this conversation.

Patients identifying primary care providers as the ideal person to have the conversation makes sense. It is a person with whom a patient likely has had a long standing relationship. The primary care physician knows the patient and is viewed as a trusted healthcare advisor. This combination should enable the conversation to more effectively be had.

However, just as importantly by identifying an owner the ability to provide electronic tools and effectively coordinate care can emerge.

A solution for the digital age:

If the ownership of the discussion moves to primary care then providers need to be given the tools to effectively support the patient. As mentioned earlier today this conversation may result in a form, card, or some form of artefact a patient can carry with them or put in a visible location such as a fridge magnet, etc.

In 2017 healthcare can do better. The complications of carrying an artifact at all times, or remembering to direct EMS to a fridge magnet is not feasible. In emergent situations EMS and hospital staff are not rummaging through a patient’s belongings to find a piece of folded paper or card. They are doing everything to save the patient.

EMS and hospitals need to be made aware of the patient’s wishes electronically. Physician EMR, Electronic Medical Record, systems should be connected to hospital and EMS systems so that when a patient presents with life threatening conditions the staff are aware of the patient’s advanced care plan and act accordingly.

Currently there is not an Ontario healthcare solution. However, but other organizations are looking to fill this gap using creative technology solutions. The recent announcements of MedChart supporting end of life planning indicates that the market is driving firms to meet the challenge.

The reality is that Ontario should have an incentive to make advanced care planning a standard. Data shows that not having this conversation can creates a financial burden on Ontario’s health system.


The Way Forward report

The graphic illustrates that by having an advanced care plan may result in significant savings where passing away at home or within the an Emergency Department is almost a 3rd of the cost when Ontario is spending more than half a billion dollars on end of life, EOL, care. This number will likely grow as Ontario’s population ages. This means a provincial investment and mandate should have a significant return on investment for the Ontario government.

Not about the dollars

But advanced care planning isn’t about money. It is about reducing burden.

If you have had the unfortunate experience of having a loved one face an emergent situation that requires lifesaving treatment you may be familiar with the decisions that are needed to be made. DNR is a loaded three letter acronym. It stands for Do Not Resuscitate and hopefully you have just learned the meaning of the acronym by reading this article. Having to declare a DNR order for a loved one in a split second while immersed in highly stressful situation and environment with care providers that are relative strangers isn’t fair. These conversations should happen in advance and it needs to be an electronic standard that is shared throughout Ontario’s health system.

  • A mandated ACP will help to reduce the burden to patients by avoiding unnecessary intrusive life saving measures that do not align with a patient’s wishes and compromise quality of life during their final years.
  • A mandated ACP will help to reduce the burden to families and those who care about the patient by not having to make the decision alone.
  • A mandated ACP will help to reduce the burden to hospital and EMS staff by not performing unnecessary procedures and this will help reduce burden to the Ontario healthcare system.

There is no solution that can eliminate the grief and pain that comes with this final transition. But we can honour our loved ones wishes and provide the care they would like to receive by having the conversation. Ontario’s health system can do its part by identifying an ACP owner, mandating a digital standard and electronic transmission to acute settings.

It is a more realistic option than waiting for an alien life form to whisk away our aging and terminally ill to another planet. Cocoon is a nice fantasy, but in Ontario we need a real solution.

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Jim Love, Chief Content Officer, IT World Canada
Aaron Blair
Aaron Blair
Aaron is a Professor of Project Management at Conestoga College. Aaron has numerous years of project delivery and leadership experience in the healthcare sector at local hospital and provincial levels. Aaron has direct experience delivering, participating or overseeing health initiatives that include: the Enterprise Master Person Index (EMPI), the Integrated Services for Children Information System (ISCIS) for children born with autism, Ontario Lab Information System (OLIS), Connecting GTA, Hospital Report Manager (HRM), Clinical Connect, and many other initiatives spanning Erie St. Clair, Soutwestern Ontario and the Greater Toronto Area. Aaron holds a MBA with a project management focus, his Project Management Professional (PMP) credential from PMI and is a Certified Professional for Healthcare Information Systems in Canada (CPHIMS-CA), provided by the Healthcare Information Management Systems Society (HIMSS). In addition, Aaron both teaches and creates course material for the CPHIMS-CA credential preparation course as a faculty member of Digital Health Canada.

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