Interviewed by Tomy-Richard Leboeuf McGregor
Interview with Véronique Hivon, instigator of the Quebec legislation concerning end-of-life care
Seasoned lawyer, committed politician, mother and passionate about social and health justice, Véronique Hivon is a captivating figure of the Quebec political community. Graduate of McGill Law in 1994, she then studied at the London School of Economics and Political Science, in England, were she developed her knowledge on the role of social measures in communities.
She is often defined as an anti-politician that can claim being as popular and appreciated by supporters of her political party as well as by the population and adversaries. Entering politics with the conviction that she had to change things from within, she is the Member of the National Assembly from Joliette since December 2008. In 2012, as a member of the Cabinet of Ministers, she introduced Bill 52, titled Loi concernant les soins de fin de vie (Act Respecting End-of-Life Care).
This is an interview with a politician that was able to pilot this touchy file, which generated important discussions with people living with cystic fibrosis and the entire Quebec population.
Ms. Hivon, what made you decide to get into politics?
I first worked as a political staffer with two Ministers, and then worked as a lawyer for the Government of Quebec. I was also involved as an activist in my party and many told me I had the required qualities to go to the front of the stage. I love meeting people and expressing my opinions very much. With time, I wanted to develop my own professional skills and to go to commit myself in the fullest.
Three strong reasons definitely convinced me to get into it. Firstly, I felt that the newer generation should take its place in politics. As you know, I?m a sovereigntist and it is important for me that we renew our discourse. Then, the question of social justice touched me and I felt that it should be a priority. Finally, I made the jump because I wanted to change things from within. It is an important theme in my commitment, I know there is a real disconnect between citizens and politics. This disconnection, I understand it: people don?t want to see politicians fit into the traditional mold. I had the will to change these things!
In the 2012 elections, you were re-elected as Member of the National Assembly for Joliette and you entered the Quebec Cabinet of Ministers. What were your responsibilities then?
The Prime Minister of Quebec, Pauline Marois, gave me many responsibilities. I was named as the Minister responsible for social services and as the minister responsible for questions regarding end-of-life care. I was also named as the Minister responsible for my region, Lanaudières. It is important to know that the Ministry of Social Services is a big responsibility, 7 billion dollars are allocated to it. Its role is wide as it touches all spheres of wellbeing, whether it be physical deficiency, autism, drug addiction or homelessness, as well as child protection services. In a nutshell, everything that touches social questions far and wide. As you can see, it was very diverse!
On June 12th 2013, in the National Assembly, you introduced Bill 52, titled Loi concernant les soins de fin de vie (Act Respecting End-of-Life Care). Where did the idea come from?
It is an idea that I had put forth at the beginning of my political commitment, and that for many reasons. During my Law studies, I understood the importance of individual autonomy so that the person can decide her or his fate. I had read a lot of jurisprudence on the subject, including the famous Sue Rodriguez case. Suffering from an incurable disease, she started a long judicial fight in 1992, demanding the right to die with dignity with the assistance of a physician. She appealed to the Supreme Court of Canada. The justices, in a very close judgment (5 against 4) had rejected the demand. I also had that chance to take medical ethics classes.
Then, I was also face with this situation when, people close to me, at the end of their lives, had greatly suffered. I also know people that had access to exceptional end-of-life care. For all these reasons, I had, on multiple occasions and at different moments, the time and the need to reflect on this question.
Politically, I thought it was essential that elected representatives look into this issue. We could not wait if, for or against, courts would trace a path for this legislation. I am convinced that on such delicate topics, we have to roll our sleeves and work with the population. Elected representatives must tackle these types of issues rather than ignoring them because they are difficult questions that can offend part of the electors. We have to assume our responsibilities!
Many people were opposed to medical aid in dying. How did you succeed in getting such wide support from the population?
Firstly, we took all the time necessary to lead different consultations. For issues of such importance, it is imperative do have the means to succeed. When trying to effect important social and human change, you have to be in tune with the population. By working well at all stages, it is possible to build the necessary consensus.
I would also say that we were able to work in a non-partisan way. We put together a commission that went to meet people in different cities in Quebec. We have to remember that the issue does not only concern medical aid in dying, it was also a question of all end-of-life care. We had to ask ourselves how to best assist people in this situation that we will all face someday. This Bill therefore also concerned palliative care and advance directives, for example. I believe that it also reassured part of the population, we really wanted that individuals concerned by this care be at the heart of the decision-making.
According to a majority of the population, this Bill became indispensable and was a real step forward for our society. That is why we wanted to work collectively: so that it would be a success. People from all fields contributed, positively improving our approach. Thus, even those who were a priori against this Bill, were not refractory at its conclusion.
Allowing all the time that we needed also enabled us to better share our message with the media. All the medical, legal or ethical issues raised were communicated to the population and debated, gradually accompanying persons that still had misgivings.
What are the main differences between medical aid in dying and palliative care?
When we talk about palliative care, it is about alleviating both the physical and moral pain in a person, but also relatives. It is to treat that person in a global and holistic approach, while taking into account all the needs to feel well. It is not about provoking death, but to accompany the person in end-of-life.
Concerning medical aid in dying, it is an element in an exceptional, very precise situation where despite the best care available, we cannot alleviate all of the pain suffered. This leads to physiological and psychological distress. Hence, with the assistance of medical staff, the person can leave serenely according to her or his will, and end intolerable suffering, when it does not make sense anymore for them.
The federal government was required, by the Supreme Court, to authorize medical aid in dying everywhere in Canada. Are there differences between the Quebec Law and the Canadian Law?
Yes, there are some differences that are important. The federal law allows two forms of medical aid in dying, because it also allows assisted suicide. In Quebec, death is administered by injection by a physician: it is the medical field that acts. At the federal level, there can be cases where the person, with another protocol, administer itself death. Concretely, in Quebec, we have made the choice to include medical aid in dying as a service delivered inside the health system, in a continuum of end-of-life care. The other aspect is that at the federal level, a person with a severe handicap could request it, while in Quebec only persons suffering from a serious and incurable disease who are at the end of their life can request it.
The moment we can resort to it is also different. In our Law, we have also included that the person must also be at the end of their life, but there is no precise period defined to allow a certain margin and so that each situation can be interpreted according to different criteria. We can usually expect that it is for a life expectancy of less than a year. At the federal level, they opted for a wider definition, that of reasonably predictable death. There is still a lot of debates to define exactly what this expression signifies, but generally, we believe that it covers a greater period than that of the end of life.
There are also some technical differences: on the federal side, a 15 day delay is required between the request and the administration of the act. When we know that a day can be like an eternity for a person suffering and in end-of-life, I believe this difference is unfortunate.
It is also important to say that our law was thought so that we remain in our exclusive jurisdiction, health. Quebec is not bound to follow those differences.
You are often cited as an example for your non-partisan approach. Do you believe that this is what allowed that support of a majority of Members of the National Assembly and of the population to this Bill? Do you believe that this way of doing could improve the climate of discussions in the National Assembly?
Yes, the non-partisan aspect was the cornerstone of this success. People felt that the elected representatives of all political parties worked for the population?s superior interest, for the advancement of society. Often, at the end of consultations, people came to tell me that this approach had reconciled them with politics! They found it beautiful to watch Members work together, in collaboration. Many even highlighted that sometimes, you couldn?t who was in which political party! This debate was not polluted by the will to make political gains.
Furthermore, I obviously think that we should work like that more often. Generally, elected representatives should avoid partisanship, in the negative sense of the term. Of course, I believe that we have to be in politics with strong beliefs, that we need diverging points of view, because it is the debate of ideas that can advance a society. When you go in politics, it is to fight for an ideal! However, I believe that when we discuss sensitive questions, we should work without partisanship, with everyone?s baggage and ideas. It is all of society that will benefit, because the debate is constructive and it allows to go to the heart of the issues.
Apart from medical aid in dying, are there any other accomplishments that you are particularly proud of?
I am very happy to have put into place the first fight against homelessness policy and of the work I did as a Minister to help persons with deficiencies or with autism. Those were small steps and there is much left to do, but there was a will on my part to increase resources, particularly for those 21 or older that sometimes experienced a break in services.
Beyond all that, I?m very proud of all the work I accomplish daily in my riding, as Member of the National Assembly for Joliette. When I can help someone get their social security check or with an occupational health and safety problem, a distressed person or another one living a difficult situation, I find a meaning in my work as an elected representative.
In your opinion, what should be the priorities in terms of health and social services in the upcoming years?
It is a very wide question! There are so many issues?
Following my experience as Minister for Social Services, I think that we should have a more global approach when we assist a person with an illness or serious problems. I believe we need to eliminate the compartmentalization of services and care delivery. It is very difficult for someone to have complete patient care that makes sense. We take care of the medical side, then a social worker can take care of the other. Often, there is no contact between both parts.
We must now reverse the pyramid. Rather than going from the service and to impose it to someone, we should go from the person and make a game plan adapted to their needs. We also need more pivot resources that would always be in contact with the concerned person. This would ensure fluidity and more efficiency for the services that are given.
We must also better recognize the importance of social services. I often say that it is not because you don?t bleed that there is no emergency! For example, we emphasize interventions to the hip, cataracts and knees, for which we have quantified targets, with an objective to meet. These targets are obviously very important, but we don?t frequently find them for many illnesses and social realities, such as dependence, persons suffering from autism or from homelessness. Without these objectives, these persons are sometimes forgotten and the allocated resources aren?t adequate.
Ms. Hivon, thank you very much for taking part in this interview!