To be there until the very end

There is a movement in Canadian healthcare that is working towards a new vision for palliative care.

It is a vision characterized by early referrals, universal access to palliative services, and advance care planning so that all people can live well and die with dignity in a setting of their choice surrounded by loved ones. Unfortunately, not everyone has this experience yet.

The team from the Centre intégré de santé et de services sociaux (CISSS) Montérégie-Ouest that joined the EXTRA: Executive Training Program was motivated by this fact, and made a commitment to better understand the needs of relatives who take on the responsibility of providing end-of-life home care.

CFHI spoke to Mélanie Dubé, Assistant Director of Performance, Evaluation, Quality and Ethics and part of the CISSS Montérégie-Ouest EXTRA team about their improvement project, and journey through EXTRA’s cohort 12.

L'équipe CISSS de la Montérégie-Ouest

A difficult mission and a promise   

The CISSS Montérégie-Ouest team were initially influenced to apply to EXTRA by their superiors – who were former EXTRA fellows themselves.  After some research, it was the core principles of EXTRA that stood out, “above all because of the program’s basis in healthcare improvement, supported by evidence while tapping into a development community and sharing knowledge,” said Dubé.

The team’s improvement project (IP) aims to develop a supportive approach for end-of-life home care services. “The project addresses caregivers, who often carry the burden of where their family member will live out their final days.” 

In many cases, caregivers accept a sometimes difficult mission – to be there until the very end. 

Not everyone is able to die in a setting of their choice and with their loved ones and so “when the person they are caring for asks to die at home, this promise can be a significant source of stress,” explained Dubé. 

The CISSS Montérégie-Ouest IP will offer palliative care and end-of-life support for clients who have expressed the desire to die at home. 

While the problem may seem simple, there are a number of challenges linked to accessibility, safety and coordination of care and services; more specifically the accessibility and availability of medical and professional resources.

The project will address the lack of support for the patient’s caregivers during the last moments of at-home end-of-life care services by using the strengths of CISSS Montérégie-Ouest. 

“For instance, we will draw upon our expertise in the field of online client monitoring thanks to the implementation of novel services such as TeleCare and Tele-Monitoring.” 

The team is also leveraging the interdisciplinary expertise of professionals and community organizations specializing in palliative care. 

A bump in the road  

Early in their EXTRA journey – after speaking with management, stakeholders, and doctors and identifying improvement ideas – Dubé’s team believed they had finished their data collection, but everything changed after hearing Vincent Dumez , an EXTRA Faculty member and coach, present at the EXTRA residency session. The presentation made the team realize the importance of engaging families and caregivers. 

“We completely realigned the project’s direction to focus on caregivers providing support to caregivers. We are now finalizing data collection with caregivers and testing improvement ideas with them.”

The CISSS Montérégie-Ouest team is now actively engaging caregivers and families as a core aspect of their IP. “We quickly realized that our project sparks a lot of interest. People readily tell us about their experiences.”

Some of the caregiver stories are jarring for the team to hear – but also provide an opportunity to grow and learn. 

A special bond

The CISSS Montérégie-Ouest team members didn’t know each other before taking part in EXTRA. For Dubé however, this was a blessing in disguise. 

“It’s difficult to explain, but we quickly developed a special bond . We have a different, complementary expertise.” 

The team, consisting of a Director of Nursing and University Education, a physician, a Director of Technical Services and Dubé, have fallen into perfect rhythm, trusting each other and making sure their respective duties are accomplished. 

“I’m not looking forward to the end, as I’ll miss my boys!” 

A little bit EXTRA

The shoulder-to-shoulder aspect of the EXTRA program has allowed the CISSS Montérégie-Ouest team to get to know policies and organizations in other Canadian provinces through the projects they are developing. 
“The residency sessions bring so much added value because they are an opportunity for exchange on the subject with the other fellows and the coaches.” 

The EXTRA residency session is the best way to learn according to Dubé. 
“It requires fellows to step out of their daily routines and focus solely on their improvement projects, with the help of a team of coaches. It is a dedicated time for training as well as a time for exchange and networking.” 

The structure of the EXTRA program has helped guide the team through the sequence of their IP’s development. 
“Even if we sometimes have to change content, it pushes us to review elements of our IP.”

The EXTRA program is allowing the team to constantly experiment, readjust and above all – improve . 

“You have to let yourself be guided through these steps.” 

In terms of useful tools from the EXTRA program, it was the driver diagram that was very valuable for Dubé and her team; this diagram helps translate a high-level improvement goal into a logical set of related goals and sub-projects. “It was a tool that despite being somewhat laborious, was very interesting in terms of mapping out our whole IP.”

With a President and CEO who have already encouraged five members of its board of directors   to participate in the EXTRA program, Dubé is confident that the CISSS Montérégie-Ouest is an organization that is passionate about continuous improvement. 

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