1ère infolettre

An Interview with Esther Green

Canadian Partnership Against Cancer (CPAC),
a Compassion-level Sponsor of the Congress.

Q: What does a person-centred perspective mean and how does it inform the objectives and goals of the Canadian Partnership Against Cancer (CPAC)?

A: In the past, healthcare providers were taught how to do things to or for people, but person-centred care is about doing things with people. It’s a way of thinking and being that sees people (patients) as equal partners in planning, developing and monitoring care. A lot of clinicians will say, “I already do that” but they may not be. Clinicians need to sit down with the person and say, “What are your goals in care? What is important to you now?” It’s about respecting the person’s values, preferences and needs, and working together to ensure that there is good communication between the provider and the person and their families, not only for their physical comfort and safety but also emotional support and the involvement of family.
Q: How does CPAC support the delivery of person-centred care?

A: We assembled a cadre of individuals who have or had cancer, or their families, and we call them “patient/family advisors”. Through this engagement, we can understand what their experiences are, what needs to change, and how to co-design with individuals to improve the collective experience. We published a report on palliative care based on the experiences of an individual and her son as they cared for her husband at home. We have also produced an adolescent and young adult report where we shared the experience of individuals who have gone through the cancer treatment phase, the highs and lows, to really help the healthcare system to understand what it’s like on the “other side of the bed” or clinic room. Q: How does patient-reported experience work to change the healthcare system for the better? A: When we talk about palliative care, one of the elements that we have been working on is patient reported outcomes. Why is this important? When individuals are able to say, “My pain is this on a scale of zero to 10”, that means that those individuals are telling the clinicians what their actual symptom is. Clinicians will sometimes say, “Yes, but that’s subjective.” Well, of course it’s subjective! Nobody can look at someone and say, “I think your pain is at such and such level”, which is what clinicians did in the past, rather than saying, “How has your pain been in the last 24 hours? Is it better or worse and if it’s worse, let’s find an alternative.” It’s about working with individuals to make change. In Québec we are funding an initiative around quality of life. The team in Québec is working on patient-reported and caregiver-reported outcomes in terms of symptom burden and interventions to improve quality of life. In two territories, we’re supporting similar projects. Imagine the impact of using patient-reported outcomes to identify symptoms and then address them. There is good evidence that shows that this methodology actually does improve quality of life. Researchers have demonstrated that when you provide early palliative care, then individuals experience improvement in their quality of life, they actually live longer.

Q: Does participation at the International Congress on Palliative Care help CPAC get their message out and help deliver their mandate?

A: Absolutely, and every participant at the congress has a role to play – not just to participate but to take ideas and messages back to their own settings and institutions and be leaders in bringing about change in those settings. We sat down with the Congress Chair, Dr. Bernard Lapointe, to discuss how we could collaborate. This discussion was driven in part because we invited Pam Tobin to come and speak at a palliative, end-of-life care meeting in which Bernard came up to us at the end and said, “I learned so much today. This is something that is really important and I want make sure it is on our agenda at the Congress” and therein the seeds were planted which culminated in the CPAC symposium at the Congress this October, “Working with First Nations, Inuit and Metis Patients and Families to Deliver Culturally Competent Palliative Care”. Organizations need to demonstrate culturally sensitive and competent care. It’s really important to ask, “What are the ways in which we can collaborate with indigenous populations?” And it’s through this collaboration that we can improve our understanding, and ensure that the voices of indigenous peoples are heard.

Q: Any last message you would like to share with the Congress participants?

A: Palliative care is most important to Canadians and we have a collective responsibility to ensure that all Canadians have access to the best quality palliative care.

For more information on CPAC initiatives, visit: https://www.partnershipagainstcancer.ca/

An Interview with Jerry Roberts

Arbor Memorial, a Compassion-level Sponsor of the Congress.

Q: How do you see the role of funeral professionals within the hospice palliative care movement?

JR: We work closely with a number of hospices in various communities across Canada. This is a key element of our community outreach. We want to ensure that all of our people in the funeral homes across the country become more educated about the local hospice and palliative care groups, and what is really happening in the day-to-day life of these groups. We also provide some education of our own to the hospice palliative care movement, as we both have roles to fulfill in this partnership of caring. The more we know about one another’s roles, the better we will be equipped to serve our communities.

Q: What are some examples of how Arbor Memorial funeral homes are collaborating with communities?
JR: Our funeral home staff volunteer in their respective communities. For example, at a hospice in Toronto, we have been a sponsor for the event, Hike to Hospice, for the last four years. Since we joined, the funds raised have increased from $68,000 to $120,000 per year. Also, our funeral homes have many facilities that serve the community well by for example, being able to hold volunteer appreciation events, or an annual Day of Remembrance, or a day of art therapy in collaboration with a local hospice. So these are just a few examples of how we give back by building relationships in the community.

Q: I understand that cultural practices around death, dying and funeral practices have changed. How has the funeral industry responded?

JR: In Canada, funeral practices have changed over the years and that’s partly a reflection of increasing cultural diversity. And while more people are choosing cremation over burials, and that’s a perfect example of a major change, there is still an overwhelming need for ritual. People want to gather with friends to commemorate a life well lived. In the past a traditional church funeral would have been commonplace; now families are increasingly requesting nontraditional events. For example, just recently I went to an event where the individual who had passed away was a sports enthusiast who never missed a Monday night football game. So the event planning funeral director created what they referred to as a Monday night football evening. Our funeral homes are conducive to these types of nontraditional events and we received many comments from people that this was a wonderful commemoration of this individual’s life.

Q: What is it about the individualized commemoration that is so important?

JR: People really appreciate that they are going to a service where the deceased person’s life story is incorporated. We believe that as funeral professionals, we need to help people remember the stories of a lifetime. This is important to capture. This is the essence of what we do.

Q: Are there other major changes in funeral practices?

JR: The whole role of technology has been an important change in most aspects of our lives, and it’s no different for funeral practices. Webcasting, memorial tributes, videos that can be streamed, there is just a constant evolution of technology that is really leaving an imprint on how Canadians are experiencing funerals.

Q: Has the relationship of funeral homes with hospice palliative care evolved as well?

JR: This is another area of major change. In the past, hospice palliative care would do their good work with patients and loved ones at the bedside, and then the funeral home would provide care after the death. Now I think we are working together more, and this makes us a lot stronger.

Q: What does participating in the International Congress of Palliative Care mean to Arbor Memorial?

JR: It is a tremendous opportunity. We are all striving to provide care and we do so at different points along the continuum of care. Palliative care provides safety, comfort and dignity to the dying and their families, and funeral homes provide safety, comfort and dignity to the families that have experienced the death. We are natural partners along the continuum of care and by working together and sharing our wealth of experience and expertise, there is really no limit to what we can achieve in our quest to support the communities that we are so honoured and privileged to be a part of. There is much that we can learn from each other and so to be part of this international congress is truly rewarding. It acts as a catalyst for our work and it serves to refocus us on the important work that still needs to be done.

For more information about how Arbor Memorial can support hospice and palliative care professionals in your community, please contact John Laframboise at (613) 828-2313 or visit arbormemorial.ca.

Innovation Challenge

Shelly Cory MA
Executive Director, Canadian Virtual Hospice

We're thrilled to see excitement mounting for the Innovation Challenge! We’ll be crowning the first International Palliative Care Innovator who will receive the $1,000 first prize from Canadian Virtual Hospice. McGill Palliative Program is providing cash prizes for the two runners up.

The International Congress on Palliative Care really is the world’s premiere interdisciplinary palliative care conference – curating the best of the best in palliative care. The Innovation Challenge is a twist on usual conference activities – injecting some friendly competition to amplify the exceptional work being done to move palliative care forward. It’s going to be a high-energy power hour of innovation!

The concept for the Innovation Challenge is a “mash up” of other successful ideas. First, the Canadian Foundation for Health Care Improvement’s national call for innovations in palliative care in 2017, the brainchild of Maria Judd, VP. Second, a rapid–style format suggested by Dr. Cory Ingram, who is co-chairing the event with me, and third, of course the Dragon’s Den. As well, we wanted to engage the palliative care community in deciding the winner so the audience will be voting via text for their favourite. Our own Dragon’s Den consisting of the Hon. Sharon Carstairs, Dr. Manny Borod and Dr. Mike Harlos will be adding “colour commentary.”

Receiving 51 submissions from 16 countries far exceeded our expectations for the first year. All of the applications were so strong that the peer reviewers required numerous rounds to narrow the field. It was a very competitive process.

We are grateful to our international interdisciplinary team of reviewers: Cory Ingram, USA; Bridget Johnston, UK; Peter Hudson, Australia, and; Shane Sinclair, Canada. And thanks to Harvey Max Chochinov who helped us break the final tie!

See you Wednesday, October 3 at 12:40pm in the main plenary room for our innovation power hour! Come to be inspired and help crown the inaugural winner!

An Interview with Lynna Chandra

Founder and trustee at Rachel House

Q: I understand you have been the driving force in establishing palliative care for children in Indonesia. What are some of the key factors that motivate you in this work?

A: I recall reading a quote by Dr. Paul Farmer which said, “The idea that some lives matter less is the root of all that is wrong with the world.” Over the years, listening to countless heartbreaking stories shared by Rachel House’s nurses, I realize that one of the greatest injustices in the world is that of inequity of access to healthcare; and this is particularly so when one is living with pain and other complexities associated with a serious illness.

We have the knowledge, the skills and the medications and training necessary to help lighten the path for children and people living with serious illnesses. The fact that there are still thousands living in tremendous pain and suffering without access to care is what motivates me every day to continue this work; so that their stories can be told, and that one day we can all live in a world where no child and no one, will ever have to live or die in pain.
Q: Can you comment on some of the most important changes or transformations you have witnessed regarding the care of very ill children in Indonesia?

A: When we began in 2006, morphine was not used. In fact, pain management was not a focus. Curative treatment was the holy grail. Today, I am grateful that this is changing – at least in Jakarta, the capital city of Indonesia. So much more needs to be done. Changing mindset takes a long time, perhaps even longer for an old and respected institution such as medical care.

Q: : Are there important gaps in caring for children with life-limiting illnesses in Indonesia? If so, what is on your wish list to address these gaps?

A: Perhaps science and scientific knowledge have been such a focus in the training received by doctors, and that soft skills such as communication and coping skills towards failure (or perception of failure) and grief have been sorely lacking. I wish doctors and nurses can be better prepared to deal with the gamut of emotions arising from the patients and their parents, as well as their own personal emotions when faced with difficult situations. We are all human beings, first and foremost. Our professional status should not be a coat of armour that separates us from our humanity.

Q: : What does participating in the International Congress on Palliative Care mean to you?

A: This will be my very first time at the International Congress on Palliative Care. Over the years, I have heard amazing things about the Congress, and I am really excited and grateful for the opportunity to be part of this. Most of all, I am looking forward to learning from everyone about every aspect of their experience in palliative care.

Q: : If you could communicate one key message to participants of the Congress, what would it be?

A: I believe that palliative care is perhaps one of the last few places in healthcare that we can still see medical professionals talk and care about what really matters to patients and their families. I hope palliative care can continue to shine its beacon of compassion and inspire all to have the courage to allow our hearts to lead strongly where we go. For as The Little Prince said, “It is only with the heart that one can see clearly, what is essential is invisible to the eye.”

For additional information on Rachel House in Indonesia click here

Femme de cœur et femme de tête

Une entrevue avec Claire Oppert

Rejointe chez elle, à Paris ce 15 août 2018, nous remercions Mme Oppert de nous avoir accordé cette entrevue.

Q : Depuis quand participez-vous au Congrès International sur les soins palliatifs?

CO : Depuis 2012, c’est un honneur et une joie de participer en tant que conférencière et en tant que violoncelliste au Congrès de Montréal. En 2014, j’ai joué en ouverture du Congrès. En 2016 et encore cette année, je joue lors de la cérémonie de commémoration, qui rassemblera tous les participants pour un temps de recueillement. Le choix des pièces de musique est très important. Il se fait en collaboration avec le Dr. Lapointe : la musique doit correspondre à la fois aux images diffusées et aux textes lus.
Q : Vous êtes violoncelliste professionnelle et vous avez aussi un rôle d’art-thérapeute. Parlez-moi de ces deux volets. CO : J’ai étudié au Conservatoire Tchaïkovski de Moscou. Je joue principalement en sonates avec piano, en trio et en quatuor. J’ai été invitée à jouer dans l’orchestre Philharmonique de Berlin et je donne des concerts dans différents pays du monde.

En tant qu’art-thérapeute, j’ai travaillé pendant 6 ans avec de jeunes autistes profonds, puis avec des patients atteints de démence type d’Alzheimer ou autres démences. Depuis 8 ans, j’interviens aussi auprès de patients en fin de vie qui sont hospitalisés en Unité de soins palliatifs à l’hôpital Sainte-Périne, à Paris.

En tant qu’art-thérapeute, je fais aussi de l’enseignement et de la recherche. Il est important de pouvoir démontrer l’impact de la musique vivante sur les patients, sur leurs proches et sur les soignants. Nous avons réalisé une étude importante nommée « Pansement Schubert », pour démontrer des effets bénéfiques sur la douleur des patients lors des soins douloureux. En fait, je vais présenter les résultats de mes recherches au Congrès sur les soins palliatifs en octobre prochain.

C’est fascinant de constater la diminution de la douleur et de l’anxiété chez les patients en fin de vie au contact de la musique vivante. C’est l’action sur les patients des effets profonds et connus depuis l’Antiquité des différents pouvoirs de la musique orientés dans une visée thérapeutique, qui doit être analysée. L’art-thérapie est une discipline d’avant-garde mais aux antécédents millénaires.

Et peu importe la profondeur du coma, le degré de la démence ou l’avancé de la maladie, la musique touche les patients qui l’expriment en bougeant leurs corps, pieds, doigts, sourcils et parfois même en versant une larme. Souvent ce n’est que l’amplification de la respiration qui témoigne de l’effet de la musique sur les patients dans le coma.

Q : Comment expliquez-vous l’effet de la musique que vous jouez pour ces patients et leurs proches?

CO : Tout d’abord, la recherche a démontré que le violoncelle est un instrument qui émet des vibrations qui se rapprochent le plus de la voix humaine. J’ai même déjà eu une patiente sourde qui a réagi de façon spectaculaire à une pièce que je lui jouais. Ces vibrations rejoignent les vibrations du cœur et les vibrations du corps de ceux qui m’écoutent – les vibrations de la vie quoi! Il y a une mise en résonance entre l’instrument vibrant et les résonances affectives profondes du patient. Je joue ce que le patient ou la famille souhaitent – je connais beaucoup d’œuvres du répertoire par cœur mais je me promène aussi avec ma valise ‘magique’ qui contient toutes sortes de partitions. Je peux jouer tant du Mozart, que du Johnny Halliday, du Édith Piaf ou même du rap maghrébin! Si je n’ai pas la partition, je la trouve sur internet et je la joue à notre prochaine séance. Ce sont toujours les souvenirs qui remontent avec une saveur du présent!

Parfois, la demande du patient ne concerne pas un morceau spécifique mais plus une tentative d’évoquer des émotions : de la gaieté, de la douceur, ou pour danser. Et même quelquefois je dois improviser parce que le patient me demande une musique qui le fera « monter jusqu’aux étoiles » ou « redevenir quelqu’un dans le soleil »!

Q : Est-ce que vous êtes bien accueillie par les patients et leurs familles?

CO : Oui tout à fait. Je dirais que ce n’est qu’un patient sur dix qui refusera le moment musical. Je ne me présente jamais comme une thérapeute – c’est justement le fait que ce moment de musique soit ‘hors pathologie’ qui permet à ceux qui écoutent de se « soulever au dessus de leur maladie », d’oublier leur douleur pour un temps, et d’être dans la joie, dans un partage festif avec leurs proches.»

Lorsque je me présente pour la première fois, les membres de la famille me disent parfois « ce n’est pas la peine de jouer, elle n’est plus consciente » ou « il ne réagit plus ». L’ouïe est le dernier des sens à partir et lorsque je commence à jouer et que les signes sont clairs que le patient est réceptif, la famille réalise avec stupéfaction que leur proche « est encore là ». La musique permet parfois de restaurer cette connexion humaine, une forme de remise en circulation des relations humaines. Les proches prennent alors conscience que la personne est présente jusqu’au bout. Ils prennent alors avantage de ces moments pour lui dire au revoir et continuer d’interagir avec elle jusqu’au moment de la mort.

Q : Et votre violoncelle, quelle est votre relation avec lui?

CO : Il a été construit en 1749, il est italien et il a appartenu à Gregor Piatigorsky, un violoncelliste russe/américain de renom. En fait, mon violoncelle je le joue à tous les jours, c’est comme un compagnon. Il me fait vibrer – littéralement. Et dans mes déplacements, il nécessite un siège et donc un billet pour lui tout seul.

Q : Avez-vous un dernier message que vous souhaiteriez partager avec les lecteurs?

CO : Je remercie toujours les patients et les familles de m’avoir permis de partager un moment aussi intime. Ce que je donne je le reçois au centuple! La musique est vivante et elle appelle la vie même si la vie ne s’apparente plus qu’à une parcelle de vie.

Au 22e congrès international sur les soins palliatifs, Claire Oppert présentera le jeudi 4 octobre de 14h00 à 15h30 – session E13-B.

Elle jouera aussi pendant le service commémoratif le mercredi 3 octobre à 17h40.

Pour lire l’article sur le « Pansement Schubert » , cliquez ici.

Pour en savoir plus sur le travail de Claire Oppert, elle prévoit publier un livre en octobre 2019 chez Robert Laffont, alors gardez l’œil ouvert.

Why is the Congress a great place for students from around the world?

Esther Laforest, Student Section Committee member, shares her reasons for attending the Congress year after year

Q: What are some of the benefits for students interested in palliative care in attending this Congress?

A: At the 22nd International Congress on Palliative Care, students interested in palliative care can find excellent opportunities to network with other students from around the world who share similar clinical and research interests through the many congress activities as well as the Student Forum (Oct. 4, 11 a.m.) and the Student Night Out (Oct. 4, 6 p.m.).

The Student Forum will provide the opportunity for students to share and discuss issues they are facing working in palliative care. This year’s focus will be on moral distress encountered by students in clinical practice and research. The congress program also provides numerous talks by international speakers on a wide range of subjects related to pediatric and adult palliative care.

Students can link up with other students and professionals on Facebook - Palliative Care Student Group. This Facebook group is also an opportunity to share articles, job postings, and learning opportunities with other students working in palliative care.
Q: Why do you personally keep coming back?

A: The 22nd International Congress on Palliative care provides numerous opportunities for students to present their work in a forum that is inclusive to many different perspectives and areas of research and practice related to palliative care. This congress cultivates a sense of community and support for learners, as well as encourages self-care and personal growth. The congress reminds us we are all learners throughout life.

“It was at the International Congress on Palliative Care in 2010, that I first had the opportunity to present work related to my area of clinical and research interest: palliative care for patients living with heart failure. Although the topic was not yet mainstream at other conferences, at the Congress on Palliative Care I had the opportunity to meet international clinical and research leaders in the area! I was encouraged to continue my studies in this exciting field!”
Esther Laforest, RN BScN, Heart Failure Nurse Clinician, PhD candidate

Q: How can fellow students meet up and network at the conference?

A: The Palliative Care Student Group will have a student table in the foyer where students attending the conference can meet members of the executive committee, and meet up with each other! We will have candy to supply your energy needs between sessions!

Students are encouraged to attend the Student Forum on Thursday October 4th to hear internationally renowned Dr. Franco Carnevale share his perspectives on managing moral distress in palliative care clinical practice and research. After the talk we will have an open discussion where students will have the opportunity to share their experiences.

The Student Night Out at Sarah B’s Absinthe Bar at the Intercontinental Hotel is a 5-minute walk from the convention center. Students can meet for drink between 6 to 8 p.m.… or later!

Q: : How do some of the relationships you make last throughout the year? What opportunities exist for ongoing collaboration or networking?

A: Students can continue to connect with one another throughout the year using the Facebook group, or by joining the executive student group to help plan activities for the 2020 congress!

Esther Laforest, Monica Parmar Calislar, and Philippe Carruzzo MD

For more information please contact Esther Laforest at studenticpc@gmail.com

Are you a student interested in palliative care? Are you seeking a conference that showcases the cutting edge in palliative care clinical practice, research, and education? Are you seeking opportunities to network with students and experts from a wide variety of disciplines who share an interest in advanced illness, death, dying, and bereavement? Undergraduate to post-doc, newly interested in the topic or studying palliative care for years, this congress is for you! At the 22nd International Congress on Palliative Care one is sure to leave with new learnings and lasting memories!

Êtes-vous étudiant(e) intéressé(e) par les soins palliatifs ? Cherchez-vous une conférence qui met en valeur la fine pointe de la pratique clinique et la recherche en soins palliatifs ? Recherchez-vous des occasions pour réseauter avec d’autres étudiant(e)s, ainsi que des spécialistes d’une grande variété de disciplines et qui s’intéressent à la maladie avancée, la fin de vie, et le deuil ? Peu importe si vous étudiez au premier cycle, ou au post-doc, que vous soyez nouvellement intéressé(e) par le sujet ou à l’étude de celui-ci depuis des années, ce congrès est fait pour vous ! Lors du 22e Congrès International sur les soins palliatifs, on est sûr d’acquérir des nouvelles connaissances et des souvenirs inoubliables !

Pour en savoir plus, demandé à vous joindre au groupe d’étudiants en soins palliatifs sur Facebook.

Esther Laforest, Monica Parmar Calislar, et Philippe Carruzzo MD

Pour de amples renseignements, veuillez communiquer avec Esther Laforest au studenticpc@gmail.com

Aura : An Interview with the communication team at the Notre-Dame Basilica

Q: Can you comment on the use of modern technology employed in AURA in a traditional religious setting.

A: When the idea came up to create a night-time experience at the Notre-Dame Basilica in order to allow more people to be aware of the beauty of our church, it was very clear that we wanted to work with a company that would respect the religious and spiritual mission of the Basilica.

Moment Factory proposed a very innovative technological experience involving light mixed with moving orchestral music. It was very important that this spectacle did not affect the architecture or the artworks in the church, of what visitors see when they visit the church. For this reason, all the technology including the lighting equipment is hidden. This means that during the day, visitors and parishioners are not distracted by any technology and there is no sense that this majestic church has been invaded. For all of these reasons we chose to work with Moment Factory.

Q: Does AURA speak to something unique about Montréal or Montrealers?
A: Aura takes place in the Basilica, whose interior design commemorates the history of Montréal and its establishment. In the Basilica’s stained glass, you can see De Maisonneuve and Marguerite-Bourgeoys, as well as statues of Émilie Gamelin, and many other people who have been central in the history of Montréal.

AURA takes place in three multimedia acts: 1)The birth of light, 2) The obstacles, and, 3) The open sky. These three acts figuratively illustrate the history of the Basilica: the story of how it was founded, the obstacles that took place (fires, etc) and now its presence as a major religious, historic, and cultural establishment, as well as an obvious tourist attraction for the city of Montréal.

Also, let's not forget that Moment Factory is a Montréal-based company, and that the music is from the studio, Troublemakers, also from Montréal. We have so much talent right here in Montréal !

Q: Thousands of people have seen AURA from around the world. What has the response been so far?

A: The response has been very positive. Parishioners as well as religious and non-religious visitors enjoy AURA for its beauty and uniqueness: a luminous experience, created in a place rich with heritage that will move you with its spirit.

Q: Is there any key message you would like to convey to the delegates of our palliative care congress that are coming from around the world to visit Montréal and to experience AURA?

A: We hope they will take that time to disconnect from the outside world, breathe, walk in the church, and enjoy the time they spend here at the Basilica

You can see the making of AURA here: