“I don't want to take the place of someone who needs it!" Services for caregivers at the St. Raphaël Day Centre

05 September 2023

“I don't want to take the place of someone who needs it!" Services for caregivers at the St. Raphaël Day Centre

Véronique Després is Director of Multidisciplinary Services at Maison St. Raphaël in Montréal. She shares her views on palliative care and death, as well as quality of life and kindness.

Maison St-Raphaël - Photo fournie par Maison St-Raphaël

Could you tell us a little about the history of Maison St. Raphaël?

It's a palliative care centre that opened its doors in 2019. Right from the start, two distinct roles were conceived in tandem: the Day Centre and the Maison St. Raphaël palliative care unit.

The care unit is designed for people at the end of life with a prognosis of less than three months, regardless of their illness. We have 12 rooms for those who choose to live out their final days at Maison St. Raphaël.

We are a non-profit organization; 50% of our funding comes from the Department of Health, the other 60% from foundations and private donations.

Let's focus on the Day Centre. What needs does it meet?

It's aimed at three clienteles: people with terminal illnesses, caregivers and the bereaved.

When I say "terminally ill", I also mean people who are not necessarily at the end of their lives, because they have a progressive illness. We haven't set any criteria in terms of time; the end of life for a woman with incurable breast cancer could be five years. We're talking here about early palliative care, with the aim of keeping people at home as long as possible, with quality of life.

Secondly, we offer the same care to caregivers as we do to patients. This is a core value of Maison St. Raphaël: caregivers have as many needs as patients.

Last but not least, we offer bereavement support.

What services do you offer?

Body care services include massage therapy, acupuncture, physiotherapy, occupational therapy and therapeutic bathing. There are also psychosocial services with social workers, an art therapist, a music therapist and a spiritual care companion. In addition, there are leisure activities such as conferences, concerts, tax credit workshops, arts and crafts, and art hives. There are also group activities: art therapy, group sessions for the bereaved, singing groups.

What would stand out in my mind if I came to visit the Day Centre?

The beauty of the premises! It's a wide open area, bright and stimulating; people are eager to discover the different services and treatments. They are struck by the feeling of great benevolence that prevails.

Caregivers are touched by the opportunity to escape isolation, meet a community, connect with others who are going through much the same thing, and create bonds that will last for years to come.

Once they've arrived at the Day Centre, what do you offer caregivers?

It all depends on what's needed. While the patient is being cared for, the caregiver can take advantage of the opportunity to get some time off to receive care or services. For example, while the mother, who is ill, is receiving a therapeutic massage, her daughter is meeting with a social worker. We're very good at facilitating simultaneous appointments.

How is information passed on between caregivers, patients and carers/professionals?

I meet everyone who applies to the Day Centre, whether they're a patient, a caregiver or a bereaved person. I gather data to find out about their history and their needs. I also seek to understand their objectives: a need for referral to services in the community, financial concerns, issues in the caregiver-care receiver relationship. This is when the intervention plan begins. We determine how we’ll work together, and I connect people with the various professionals.

I meet with the team of professionals once a week. I introduce them to the newcomers and their files, so that people don’t have to repeat their stories.

The team of professionals who work at the Day Centre is the same as the one in the care unit at La Maison. If a caregiver has already started to follow up with the art therapist at the Day Centre, they will remain with the same professional if their sick relative is admitted to the care unit.

Does attendance at the Day Centre have an impact on the usual services received at home?

This does not restrict access to services at home—quite the contrary! We work closely with CLSC services. If people are not familiar with the CLSC, we accompany them to make a request. It has been shown that day centres help people to remain at home, complementing the home care services offered by CLSCs. Where necessary, we refer people to community organizations in their area.

What difference does a palliative care day centre make to someone’s life at home at the end of life?

A person experiencing stress, tension or sleep problems can benefit from services tailored to their needs at the Day Centre. These services may include acupuncture or massage therapy, with the aim of improving sleep quality at home. People can discuss and alleviate these issues in a secure environment. They can also benefit from an objective look at their situation, with the social worker, for example.

When death occurs, what support do you offer caregivers?

In addition to individual follow-up with a social worker and a support group, the bereaved can access all the services of the Day Centre we mentioned earlier. Every bereavement is unique and complex, depending on the circumstances. Once the bereaved person and the care team agree, the services come to an end.

Is the St. Raphaël Palliative Care Home and Day Centre the only one of its kind in Montréal? Is there a model that could be replicated elsewhere across Quebec, and are there any plans to do so?

Currently, Maison Michel-Sarrazin in Quebec City, Maison Victor-Gadbois in Saint-Mathieu-de-Beloeil and Maison Desjardins in Rivière-du-Loup also have day centres.

The Maison Mathieu Froment Savoie, in the Gatineau region, recently reopened its doors. In Drummondville, Maison René-Verrier will be opening a day centre in a few months’ time, and a number of other initiatives are currently under development. On the Island of Montréal, St. Raphaël is the only palliative care day centre.

To my knowledge, St. Raphaël Day Centre is the only one to offer the same services to patients and caregivers.

Are there any new developments planned for the Day Centre, and what role will caregivers play?

Absolutely! We’re thinking about a symptom management clinic: a doctor would meet with people who are ill and experiencing end-of-life symptoms, always with a view to staying at home as long as possible. For Maison St. Raphaël, this would be an ideal complement to the Day Center. The role of caregivers would be to accompany the person and share additional information with the doctor.

In recent years, there has been a lot of talk about caregivers in the news. When caregivers contact you, do you feel that they now recognize themselves more as caregivers?

Interesting question. I had contacted l’Appui pour les proches aidants as early as 2019, because from the very beginning we wanted to offer services to caregivers. However, we had difficulty reaching them because they didn’t identify themselves as caregivers.

I think there’s now a better perception of what it means to be a caregiver, but I’d say there’s still work to be done. Even today, when I meet a sick person with a caregiver in my office, and I tell the caregiver that they are entitled to the same services as the person they are caring for, the reaction is: “Oh no, I don’t want to take the place of someone who needs it! I explain to caregivers the importance of taking care of themselves: it’s good for them, it’s good for the patient.

Patients often feel like a burden. When they realize that their caregiver will receive services and care, such as a gentle moment with a therapeutic massage, for them it’s a gift…

Thank you to Véronique Després for shedding light on these sensitive issues.

People can come directly to the Day Centre, without being referred by a healthcare professional. There is a waiting list for the care unit, but not for the Day Centre. There are no financial requirements; everything is free, regardless of income.

For more information

Did you like this article?

Subscribe to the Appuilettre, the Newsletter for caregivers, and receive each month, testimonials, thematic files and interviews.

east Subscribe to l'Appuilettre

Need to talk?

Contact our Caregiver Support Helpline for counselling, information and referrals.

Every day from 8 a.m. to 8 p.m.

Free of charge.

call  Caregiver info :  1 855 852-7784