Teresa Dellar on the philosophy of hospice care, the importance of community, and the need to put palliative care on the map
(From left to right: Teresa Dellar, Sandra Watson)
“Here, you come in through the front door and you leave by the front door. We continue to treat the person with respect, and when a person is leaving they deserve the same warmth and caring and love that they came in with.”
By Devon Phillips. Teresa Dellar, motivated by the flawed healthcare system that she witnessed as a hospital social worker as well as her own personal drive to give the dying and their loved ones the best care possible, co-founded the West Island Palliative Care Residence (WIPCR) 14 years ago. As Executive Director, Teresa possesses a leadership style that blends creative networking and fundraising talents, a deep respect for all her colleagues, a wacky sense of humour, and a strong vision of universal palliative care. I met with Teresa in her office at the WIPCR in Kirkland, Quebec.
Q: Congratulations on your recent fundraising Ball for the West Island Palliative Care Residence (WIPCR).
A:Thanks! We had a lot of dignitaries who came and a royal couple. We had the Queen’s eldest grandson Peter Phillips and his wife Autumn. The dignitaries included Otis Grant, Anthony Calvillo, and Alvin Powell, and some Major Brigadiers of the Royal Canadian Army as well as four ministers and their body guards. And Dr. Bernard Lapointe, Director of Palliative Care McGill, was introduced to the 520 people in attendance. We were able to raise a record amount of just over $500,000 net for the Residence. We are part of the community and the community never lets us down.
Q: How much do you have to fundraise every year?
A: Three million dollars in total. It’s a huge commitment and we do this year after year. As you can well imagine, the Ball takes us months to organize but the results are the reward. You have to have fun to do fundraising. People are not going to come if we bombard them with sad stories all night. Palliative care is an important topic and an important part of life. We believe you can help and you can have fun.
Q: You mentioned the importance of community. What do you mean by that?
A: The community has adopted the residence so everything we do, we do with the community in mind. We educate the community about palliative care and we hold a lot of community events. Fifty people recently came to hear palliative care psychologist Johanne de Montigny speak. And we have 270 volunteers. You know it’s their residence, they have a say, and our volunteer coordinator updates them every month by newsletter. We want the volunteers to have a sense that this is their home. They are huge ambassadors and we treat them with respect. Our volunteers are great!
Q: Given the new policies regarding medical aid in dying, do you think that people are clear what the difference is between palliative care and medical aid in dying?
A: It’s confusing for people. People need to know the definitions because sometimes the terms are used interchangeably. What we did is we held information sessions to educate every staff and every volunteer. We educated them on two things: core values here at the residence and Bill 52. Our head nurse, Rose De Angelis, did a great presentation on what all the terms mean. We educated over 200 people that way. What was amazing is that we asked, “Do you have any questions, and for anyone that does not want to speak up now, Rose, myself and Sandra are available anytime, you can come and see us.” Not one person disagreed with our position. So not only do we have buy-in from our board and all our staff, but also from all our volunteers. It is really important to me that we have buy-in from our largest group which is our volunteers. Every time you teach the volunteers something, you are teaching the community because every volunteer who saw this presentation is talking to others in the community
Q: And what is your position at the West Island Palliative Care Residence regarding medical aid in dying?
A: Our position is that we recognize that medical aid in dying is the law and we are not going to fight the law, but we do not offer the service of medical aid in dying because it is not within our philosophy of palliative care. As we would not offer radiotherapy or chemotherapy, it’s not our specialty to hasten death, so we don’t do it.
Q: What response do you have for the statement: There is nothing more we can do for you.
A: There is always something that can be done. We have physician and team involvement, and they speak to the family to say there is always something that can be done. At the end of the day, if the patient’s symptoms or their pain is not managed, we need to speak to them about palliative sedation. Over Christmas, there was a patient at a CIUSSS in our area who wanted assisted suicide, and when the patient and family were told about palliative sedation, they accepted it. They didn’t even know about palliative sedation before this. So I don’t ever believe there is nothing that can be done. I think that for people who say they want assisted suicide, there is so much more underneath that and it is probably not related to physical symptoms. And that’s why we have brought in an art therapist who has become such a big part of our team. Really a lot of suffering has been worked out through the art therapy program. You know when we went to St. Christopher’s Hospice and found out that they have ten art therapists, we saw the magnitude of the program. I truly believe that a lot of physical suffering is rooted in psychological, emotional, social and spiritual suffering. I had to fight for the art therapy program because it’s considered artsy fartsy, like music therapy. A lot of people see it as the icing on the top of the cake and not everybody believes in the icing and the value of it, but there is value, and sometimes it is the glue that holds the whole cake together. Our art therapist is actually a psychotherapist who does art and we have seen amazing things happen to our patients as a result of art therapy.
Q: Can you tell me about the philosophy at the Residence.
A: We want to work in partnership with everybody in the palliative care network, with McGill, with University of Montreal, everybody, and our goal is not to put this place on the map, but to put palliative care on the map. It is never about the residents’ care being better or more appropriate here compared to somewhere else. It’s that every place plays a role, including the hospitals downtown, and we should all be working together to promote palliative care. We want people to die well wherever they are and we want to ensure that palliative care is accessible to everyone. We even have pets die here with their owners. Recently, the night before one of our patients died, her cat died. We called the vet to see how we could make the cat more comfortable and he died very quietly on the bed beside her and the next day the owner died so they died together. It was not expected that the cat would die when they came in. This is not the first time this has happened. We had a dog who never left his owner’s side and when the owner died, a month later the dog died. We see this all the time – owners and pets dying together.
Q: I understand you worked as a hospital social worker for many years. What was the motivation to start a hospice?
A: When I was 16, I wrote a story about a girl who did not have a place to die. From then on my life story was written. Then when I was a social worker I had to keep sending people down to Mt. Sinai or Notre-Dame-de-la-Merci for palliative beds. There is nothing wrong with these places but they are very far to send people from the West Island. This is after we had gone through all the chemo with them, they were our patients in and out of hospital sometimes for a couple of years and suddenly they are dying and it’s bye-bye. So I said that I would try to change this myself and if I couldn’t, I would leave my profession because I couldn’t do this anymore. This was an ethical issue. I could not abandon people that needed us, but my mandate was to move people out of the Lakeshore Hospital. In one case for example, we sent this man who had a 16-year-old daughter downtown to die. His wife had already died. And his daughter, an only child, 16 years old, had to travel downtown by bus to go and see him. It was so wrong.
Q: There is obviously so much care and respect extended to the dying and their loved ones here.
A: One of my biggest learnings came from Ste. Anne’s Veteran’s Hospital because my grandfather died there in 1992, long before we opened. When he died there was a procession to take the body out in full view. To me, there was never going to be a back door here. You come through the front door and you leave by the front door. We continue to treat the person with respect, and when a person is leaving they deserve the warmth and caring and love that they came in with. I could never get over working in hospitals all my life that most morgues are near the garbage dump ̶ did you know that? I never wanted to have that. There is nothing worse. Nobody deserves that, it is disrespectful.
Q: How did you get the hospice started?
A: I have done volunteer work all my life. I was President of the Beckett Players Foundation and when I found out who was coming to one of our events, I switched all the nametags so I could sit beside the elected official, Russell Williams. So he said to me, “What do you do?’ And I said, “I am a social worker in oncology and palliative care at the Lakeshore”. The night went on and later I said, “You didn’t ask me what I want to do.” And he said, “Ok what do you want to do?” And I said that I want to build a hospice. And he said, “Really? Call me.” And so I did, and that was that! Russ believed in palliative care right away, very much so. He now Chairs the Champions Council at the Canadian Hospice Palliative Care Association (CHPCA).
Q: How does the leadership work here?
A: We want to lead together. It should never be that I lead the Residence; we lead as a team. We have difficult decisions to make sometimes like last week when we had six referrals and only one bed available. I don’t have all the answers nor should I. I do not know how to do everything, but don’t tell my husband that because he thinks I do! We need to make sure that everybody has a say. This is our community project.
Q: I understand that you co-founded the Residence 14 years ago and have served as the Executive Director ever since. What’s your wish list for palliative care at this point?
A: We have two projects on the table right now. One is that we have 14 beds in another building that costs a lot to rent, so we are looking to consolidate and have the team all under one roof. Also, we want to partner with McGill around education and research. We want to lend the space for people to come and do education here. There is a huge need in the community and we get calls every week. We have in the past had people come from long-term care centres like St. Andrews for stages but the problem is that we don’t have the manpower to follow up and mentor them. The population is aging and people in the long-term care facilities have not been educated around palliative care so we, the palliative care community, need to help people die well in other places beside here, for example at home. We can never take everybody and it’s not our goal. We have a full-time nurse that job shares and who goes over every single day to the Lakeshore Hospital to help people over there that we can’t bring here. But that takes money and manpower, and just like everybody else, there’s no money and there’s nobody to do it, but we are trying anyway.
Q: Do you think there are societal changes in how people think dying should take place?
A: First death happened in the home, then death happened in the hospital, and now there are few beds in hospitals, so death has to move back home. The baby boomers changed the way we came into the world with birthing rooms and home births and everything, and the baby boomers are changing the way we are leaving the world. I think the change is really motivated by baby boomers who want to leave a legacy, and make sure they die well which means where they want and how they want, in a dignified manner and not just in a hospital room. When I talk to the funeral homes, they tell me that the baby boomers are changing the way funerals are done. There is a lot less use of funeral parlours, and more use of community centres. Places like yacht clubs now rent space for funerals! And why not, if that’s what you loved and where you belonged.
Q: Does the government ever look to you for leadership?
A: Yes they do. Every health minister has been here except for the PQ. Dr. Bolduc definitely came and Dr. Barrette was here. And the government sends people to visit. We get people from Rimouski, people from everywhere wanting to duplicate things. The door is always open. We share best practices and we are always looking for best practices. We are going to the UK next month, Sandra, Rose and myself to visit hospices including St. Christopher’s in London. We should always be striving to be better, always striving to learn, always networking to be better. Every time you talk to someone you can learn something. And this is the most important lesson: Always make sure that what you are giving away or what you are sharing is something you’d want. So if something isn’t good enough for you, then it’s not good enough for the person in front of you.