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Proper End-of-Life Care: Why Is It Important and What Has Changed With COVID-19?

Dale Weil, executive director of the Teresa Dellar Palliative Care Residence in Montreal, the largest freestanding palliative care facility in Canada, talks about its approach to guarantee proper end-of-life care during a pandemic.

By its very nature, end-of-life care prioritizes compassion, presence, and touch. However, with COVID-19, palliative care homes have had to adapt and change significantly over the past six months.

In Short: Palliative care homes and end-of-life care centres are adapting their facilities during the pandemic to let families visit their loved ones, so they don’t die alone.

Dale Weil, executive director of the Teresa Dellar Palliative Care Residence in Montreal, said creating these positive end-of-life experiences, while also ensuring safety, is a challenge.

  • Part of the centre’s success is linked to maintaining the measures established at the beginning of the pandemic in March. This includes adapting to new changes in their facility regarding visitors and volunteers, Weil said.
  • These measures are ongoing as COVID-19 cases in Quebec rise. As of Oct. 1, parts of the province have moved into ‘red alert‘, the maximum level on the colour-coded regional alert system.

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Keeping the Residence in the ‘Green’

Weil said the residence’s goal focuses on keeping their centre in the ‘green’ (low in cases and Covid-19 transmission), and keeping their staff healthy and able to serve the patients.

  • One way they ensure safety at the facility is by establishing health checks for visitors and tests for every new patient. New patients are also put into quarantine until the results come back negative.

Another aspect of the residence’s goal during this time, explained Weil, is to recognize the value and importance of family during the end-of-life process.

The Importance of End-of-Life Care

So many positive things can happen in those last few days of a person’s life, explained Weil. She said with proper end-of-life care, a patient can feel like they have lived their last days the “very best that they could”.

This is extremely difficult to guarantee if a patient is all alone said Weil.

“The process of dying, one of the most important pieces of it is actually not being alone, and being accompanied in that journey, and it’s important for both the ones left behind and the ones that are dying. If you can imagine losing someone, you try to imagine what it would be like if you couldn’t see them, and what it would be like for them if they couldn’t have seen you,” said Weil.

“The ability to be together, and not be together to give care, but to just be together to bring back memories, to bring dignity to that person who’s dying, to help resolve things that are left otherwise unresolved, to be at peace, to feel okay to die, to feel okay for someone to die; that can only happen when people are together.”

Weil explained a proper end-of-life care experience can be incredibly important, even cleansing, for the families. She explained bereavement for loved ones who have not been able to be with their person who has died adds a whole other layer to the grief. 

“People even have a hard time if they weren’t there the moment someone took their last breath, but imagine how someone feels who hasn’t seen them for months or weeks or even days, it’s very, very difficult,” said Weil.

Changes to Palliative Care During COVID-19

One of the Teresa Dellar Palliative Care Residence’s priorities has been to maintain the proper health standards while also adding policies to enable families and loved ones to be together.

  • There is an ‘essential list’ of six family visitors (made up of spouses and adult children) and, in some cases, a maximum of four ‘other essentials’.
  • Visiting hours are limited to four people over a 24-hour period.
  • Visiting hours are between 10 a.m. to 8 p.m.
  • Two visitors at a time are allowed instead of one visitor.
  • Patio visits are permitted for those who are not on the essential list of visitors.
  • Cats and dogs are permitted in rooms.
  • Children (14 years-old and under) can enter without being considered one of the essential six people.
  • When a patient is in decline, visiting hours open up to 24/7.

Volunteers at the residence have also been affected by changes in protocol. At the beginning of the pandemic, Weil explained they had to remove volunteers from all aspects of the residence. This put a strain on staff, since volunteers fill a variety of roles including patient care, laundry services, and kitchen staff.

  • The centre has gradually brought back some volunteers in certain areas such as the kitchen, meal delivery service, laundry and reception, but are still holding back volunteers from assisting in patient-care areas.

Without the steady flow of volunteers and visitors, as was the case before the pandemic, Weil said more pressure has been put on caregivers. Weil has been proud of the way the staff has adapted to these long-term changes.

“I’d like to call out just how flexible they’ve been. How they’ve gone, you know, beyond the call of duty to try, in what is a very difficult time where safety is the first priority, to balance that with compassion,” said Weil. 

Filling the Gaps in Long-Term Care Facilities: What can be done to improve the end-of-life experience?

During the peak of Covid-19, there were no visits in many long-term care facilities or hospitals and people were dying alone, explained Weil. While the palliative residence always allowed visitors at some point (near the patient’s end of life), another sad reality was happening across the country and province.

  • In April 2020, disturbing reports emerged about the “inhumane conditions” and lack of care at Herron, a CHSLD long-term elderly care home in Dorval, Que.
  • Recently, those in Herron’s residence were found to have been victims of “organizational negligence” during the first wave of the pandemic.

Weil said she is careful to not compare her residence to other CHSLDs (residential and long-term care centres) and hospitals due to their differences in patient-nurse ratios.

  • The Teresa Dellar Palliative Care Residence has three or four patients to one nurse. Weil explaind hospitals’ ratios are much higher because they have suffered from lack of resources.

However, Weil explained that in general, the pandemic has resulted in the recognition of an opportunity to improve training in end-of-life care facilities.

“There is the need to really educate people on what that looks like, what is that palliative approach that needs to be adopted, so there’s work to be done there,” said Weil.

The Bottom Line:

Covid-19 has tested long-term and end-of-life care facilities.

  • Weil explained that the key to creating a positive end-of-life experience rests in recognizing the importance of family and togetherness.

Not only does this help family bereavement through a therapeutic and curative experience, explained Weil, but togetherness, at the end of life, helps someone die in peace with much less anxiety and fear and elevates their dignity.

“We don’t necessarily add days to people’s lives,” said Weil. “What we really do is to add life to those days and help that person do and be exactly what they want and fulfil those last few things they would like to fulfil.”