Beyond the Cancer Diagnosis: Dialogue with Marianne Arab, Hosted by Adrian Pogacian

In this new episode of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian addresses the need for Psycho-oncological Education in cancer care, with Marianne Arab, Provincial Manager of Psychosocial Oncology, Palliative and Spiritual Care with the Nova Scotia Cancer Care Program.

Marianne Arab is the Provincial Manager of Psychosocial Oncology, Palliative and Spiritual Care with the Nova Scotia Cancer Care Program. Her career experience includes working in the areas of inpatient Family Medicine, Oncology and Palliative Care as well as the development of the Grief and Bereavement Program at the QEII Health Sciences Centre and spans over 25 years. Marianne has facilitated the Interprofessional Psychosocial Oncology Distance Education (IPODE) Course offered by deSouza Institute since 2010.

Marianne was born and grew up in Halifax. She is a clinical, licensed social worker who earned her Bachelor of Social Work from McGill University and her Master’s in Social Work at Dalhousie University.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

Adrian Pogacian: Hello everyone. Welcome to a new edition on Beyond the Cancer Diagnosis interview series. Today it’s my pleasure to have with me Marianne Arab.

She’s a clinical social worker with an interest in psychoncology, but especially in psychoncological education. Marianne, thank you for accepting my invitation. Very glad to be with us today.

As I mentioned in my introduction, today’s subject is the need for psychoncological education worldwide, because as any important field or domain in the world, it needs an education or an educational process. Therefore, for the beginning, I would like to define or to develop briefly your opinion about the psychoncology domain, how you see it, how you feel it, what do you think this domain is or should be?

Marianne Arab: It’s a good question. It’s a pleasure for me to be here talking with you. My knowledge or expertise in psychosocial oncology began probably about 12 years ago.

The book that I turned to the most was the supportive care framework, which was developed by Dr. Margaret Finch, who is a fellow Canadian out of Toronto. And in trying to develop a program, we really looked at the domains of supportive care that she identifies that really do fit into the psychosocial oncology framework from my perspective. When people ask me my job, I say, basically, we deal with everything connected to a cancer diagnosis that is not the treatment of it.

How does cancer impact our patients? Well, if we work in the field, we know that it impacts in many ways. And for me, psychosocial oncology encompasses that impact.

The social, the emotional, the spiritual, the practical, the informational, the financial, and the physical. There’s absolutely a physical component to it as well in symptom management, in particular, some of the items on the ESAS or the Edmonton Symptom Assessment Scale, which look at fatigue, depression, anxiety. There can be definitely a physical component to that as well.
So that’s kind of my very high level overarching definition of psychosocial oncology. I know you call it psycho-oncology. We tend to, in Canada, add the social piece to that just to broaden the general understanding of what we’re talking about.

Adrian Pogacian: Yeah, there is a lot of debate nowadays, and you know it, of course. Some call it psycho-oncology, others psychosocial oncology. I had a previous interview with Dr. Wendy Lam, the acting president of IPOS, and she makes a clear difference between these two concepts. So I agree with you, the correct term is psychosocial oncology. And since we are talking about this concept, I notice nowadays a lot of talks about awareness, prevention, and education within psychosocial oncology.

And sometimes, this is the thing that makes me wonder and asking, I had, or I have the impression that people and sometimes specialists mixed this concept.
It is a difference, and if yes, which is the difference between awareness and prevention, between awareness and education? Because sometimes they are all three put on the same pocket, to put it this way.

Marianne Arab: I mean, it’s interesting to think about that and to think about it in the terms of, are they different? Are they interchangeable? I mean, for us in the work that we do, we really focus on the need for psychosocial oncology specialty support for our patients throughout the cancer trajectory.

So when you kind of define prevention and awareness, I really think, I mean, education plays a role throughout all of these phases, right? So awareness is the first step. And for us, it’s more about domains and who’s responsible.

So, I mean, I see that there is a difference. I see that awareness is an important educational component for the general public, right? And then I see awareness leads to prevention.

If you’re aware of the various screening tools that are available to help early diagnosis and catch cancer early, awareness and prevention go hand in hand for me. But the need for psychosocial support also should be a part of all of this process. So awareness, prevention, diagnosis, treatment, end of treatment, survivorship, palliative care, recurrence, throughout all of those phases of a person’s cancer experience, there needs to be, there should be a major role for education.

And what does that look like? Education isn’t always enough for some patients, but education is a component, I think, of almost every type of intervention we offer to our patients.

Adrian Pogacian: Talking about education, the recent IPOS Congress education was one of the subjects that was approached. And there were many debates on how future education in this field should look like. There were some things, let’s say, that I agree with.
There were other things, of course, that I can’t agree with. But as a concept, and you know that you’ve developed a very interesting executive education course on psychosocial oncology, could you tell us the idea or what was the fundament behind creating this psychosocial oncology executive education course?

Marianne Arab: Sure. So, I mean, this course was really created by Dr. Deborah McLeod a number, many years ago, and developed as both a university accredited course and a continuing education course. And my involvement has mostly been in the continuing education course.

I mean, the big rationale for developing it at the time, and even now, is that it’s such an important component of patient-centered care. So, all of these aspects that I touched on earlier really change the way patients experience a cancer diagnosis. And without proper supports around them, including healthcare providers who are knowledgeable in how to respond to the many issues that can come up, without that, our patients are not getting the best care.

They’re not getting standard of care, and they’re not getting best practice. So, in particular, the continuing education course was created to provide opportunity for those who do not have a specialty in psychosocial oncology to better understand what is it that our cancer patients go through, and what is my role as a frontline staff in being able to provide that care. Because there’s almost a belief that if they talk about feeling depressed, I need to send it to a social worker or to a psychologist, that there’s nothing I can do.

That’s not my area of expertise. And what I hope this course, in particular, provides to clinicians is the understanding that there are many things you can do as a frontline staff to help your patients with many of the common symptoms, side effects, issues that they identify as a concern for them. And it’s more our fear of not being good enough or not knowing enough or not being the expert that stops us from asking the questions, and then it doesn’t go any further.

And so, our patients go through the cancer experience without the full benefit of being able to have the resources and supports they need to cope with such a scary diagnosis. Even patients who have cancer that they will survive, and it’s still scary. I mean, just hearing the words that you have cancer.

So, from all aspects, I think these are the kind of courses that can provide confidence, improve skill, build on the skill sets that many clinicians already have, but they’re not confident around using them. And everything we do connected to that is going to improve the patient experience. And our ultimate goal is to do that, right, is to have our cancer patients get through this experience in the best way possible.

Adrian Pogacian: We put the patient first and then, and it’s very interesting that what you mentioned about the frontline. And this course, it’s very useful and helpful for those on the frontline with the diagnosis, during treatment, and after. And I give you here the example of oncology nurses that are probably, or I guess, the most important persons in the frontline of patient care.

And a course like this, attending a course like this, will help them have also that, let’s say, administrative authority, if I can say like this, because we can’t talk about empathy because they already have. We can’t talk about care because they already provide. But this is the most important aspect that provides this, let’s say, bureaucratic aspect so needed nowadays, because we want to do so much, too many things.

And sometimes we are blocked by administrative and bureaucratic issues, which is unfortunately not a good thing. And you said earlier that this course has like a history. And now I have to ask you because pandemic and pandemic time and COVID-19 was a huge challenge for everyone.

In this, during the pandemic, the course was moved online or did you stop the course or how you manage the course during the pandemic times? It was, let’s say, an opportunity more than challenge or a challenge more than opportunity?

Marianne Arab: Actually, no change. Actually, I just want to just go back quickly and just say, I mean, I think everything that we teach in the iPod course falls within the scope of practice for most healthcare providers working with cancer patients. So absolutely frontline nurses, as you say, are one of the most important clinicians and the one that the patient probably sees the most.

And so they already have these skills. And I just feel like courses like this just help them to hone those skills, right, to feel more confident and to get better at it and gives them a little, you know, some little tools and little gems that they can take back. And the course was basically created for frontline nursing.

But I’ve actually found, too, that even, you know, new social workers who’ve not worked before in oncology coming in find the course very helpful. So new clinicians, even outside of nursing, who don’t have a lot of cancer experience, definitely find the course helpful. So the course has always been an online course because it’s anybody can take it anywhere in the world.
So in fact, COVID didn’t really didn’t impact us in that way. But we certainly we did not see a dip in numbers, probably, in a way, saw an increase in people taking the course. And as people become more and more familiar, I think that it’s been a benefit.

Before COVID, I would always have at least one or two clinicians who would say they’d never taken an online course or unfamiliar. And now I never hear that anymore. So I think nowadays, people are so much more comfortable and, and confident online.
And you know, that it’s less intimidating to take a course online. So I think that it’s been a benefit from that sense. We didn’t, we never integrated into the curriculum anything specific about COVID.

But absolutely, in the courses that were held over the period of time where it was at its at the height of the pandemic, it definitely dominated a lot of the conversations. And, you know, the impact that it had. So I think it was good that we have the live sessions because it allowed people to talk about what was actually happening as opposed to just watching recorded sessions that might have been done, you know, five years ago before the before the pandemic.
So I thought I think that was an advantage as well.

Adrian Pogacian: Now, we will talk about education for specialists. I would like to move a little bit to patients education. Because, for example, in my country, Romania, in eastern part of Europe and in other continents, like Africa or Asia, statistics show us that patients don’t have not education, but don’t have enough knowledge of their condition as oncological patient.
How you see maybe a future course or how you see this concept of patients education? Because everybody said he, this patient or that patient don’t have an education in terms of cancer disease. But what is missing?

Marianne Arab: There’s so much out there, right? I mean, there is definitely a, the focus has moved towards educating patients. And so I wouldn’t say that that there’s not, I don’t know that we need to create more patient education.
I know one of the biggest things that has been a challenge for us and, and kind of the gap that I see is more, how do we connect patients with the right education, with the knowledge that they need? So we have in Canada, the Canadian Cancer Society, we have

Wellspring Canada, we have all of the disease specific organizations, Lymphoma and Leukemia Society, the Lung Association of Canada. Like there are so many, there’s so much out there.
And many of these programs have excellent patient education material. They some have online support groups, some have disease specific online support groups. But what I hear from almost all of them is that they don’t get a lot of patients coming to their sites, or they’re not connecting with a lot of patients.

And I mean, I could just take in Nova Scotia, which has a population of about a million people, we get we have about 6400 new cancer diagnoses a year, which is the highest in Canada, actually. And that doesn’t include the 1000s who are in treatment or then living with their cancer, you know, maybe in follow up care. So you’re talking about 1000s of people, probably hundreds of 1000s of people in North America, for sure.

Right. So I find it, I don’t think it’s that nobody needs the support. I think that we just have not figured out yet how we’re how to connect patients to the right educational programs at the right time that makes sense to them.

Adrian Pogacian: But I wanted only to add that. And also to ask you to comment, another important issue to be like in the defense of the patients, sometimes they don’t have the time for education, because in Romania, where is a gap of two years from the first symptom to diagnosis, and then at least one year to start in the treatment. So each patient in Romania lost at least three years.

So when you find out that you have cancer, you lost three years, three important years. So you don’t have time to be educated or to learn materials, because you are fighting for your life and you don’t have time. So with this regard, let’s say patients can be excused.
But otherwise, I guess it is also very important to confirm that this intention, this will to know what is happening with me.

Marianne Arab: I mean, I hear what you’re saying, and it’s a different process for you. And I guess I don’t really, I wouldn’t want to say that the burden needs to be on the patient to educate themselves. I think part of it is having sufficient resources, having sufficient psychosocial oncology specialists.

But also, again, for me, it still does go back to the healthcare providers knowledge and the frontline staff, because there’s ways to connect patients to materials that are very simple and short. So the burden shouldn’t be on the patient to have to find and read. But if we have an informed workforce and frontline staff who know what resources are available, and we talk about this a lot in the course, know what resources are available in your hospital and in your community.

And then when a patient talks about something within, you know, in treatment, you can say, I have this one pager on fatigue, there’s some things on there that I think will help you. And it’s one page of, you know, written for a very simple, like grade eight language, grade eight wording, so that everybody can understand it. And it’s not up to the patient to figure out what they can trust and where they can find it.

So I think that that’s an important component. I mean, the whole idea of, I think you’re leading towards kind of the question around the right not to know. So that’s a big, so my background is Lebanese.
And that’s a big, big thing in my community. It’s not as big a thing in North American culture. And I feel like there’s some push and pull there.

I’ve definitely have seen it with members of my community that are dying. And, you know, the oncologists want to talk, like feel like it’s unethical to not share the diagnosis with the patient and the prognosis. And then you have family members who then push and say, you know, I know my dad, and he’ll give up if he knows.
And so it’s really, it’s a conundrum. And it’s a challenge to know how much should I and what am I ethically obligated to share with the patient and they do have the right to know. So there’s that.

I did work with a palliative care physician once. And the way he kind of worked around it is he would agree to asking the patient how much they want to know. So if the patient themselves says, my daughter takes care of all my medical decisions for me, please let I want her to know and she can explain to me what’s going on.

Or, you know, there could be a number of different responses. But at least that way, you’re not making the assumption as the clinician, you’re not imposing your values on the patient and that he has the right to know. You’re giving him the power to tell you, yes, I do want to know.

And then of course, he has the right to know. Or no, I would prefer that you just talk about, you know, you talk with my wife or talk with my with my children and then as a family, we’ll talk about it. So, I mean, that tended to work very, was a very lovely way of giving power back to the patient and letting them make the decision without going against, you know, outright going against the wishes of the family.

So that’s kind of always been my thing. Ever since I saw that, you know, ever since he modeled that in front of me, that’s usually my direction. If there’s a conversation around whether or not a patient should be told, I usually tell that story because I think that’s a nice way to resolve that dilemma, that ethical dilemma.

Adrian Pogacian: Since we are approaching the final of the interview, I would like to, let’s say, end this circle of education. We talk about specialists, we talk about patients, and now I want to talk about people in general, because the lack of psychosocial, oncological education can lead to different badly situations that we don’t want to happen.

For example, in talking about adolescence, yes, or which are the most vulnerable, and not knowing the fact that cancer is not a transmissible disease, and a cancer patient which is, for example, a high school teenager, and if his or her colleagues doesn’t have a minimum education on oncology, that’s not on oncology as a subject, but what it means to be ill, can lead to things like bullying or other things that we don’t want to happen. So about this category, what do you think?

Where should we interfere? Or where should we manage this? Because it is not an excuse.
I wish I did not do this, but I didn’t know that, I don’t know. So, especially now, and in schools everywhere, we are talking about bullying, we are talking about all kinds of bad things that happen due to the lack of information, or due to the lack of misinformation from different social media groups.

Marianne Arab: Yeah, I mean, it’s a really great question, and it’s a big question, probably bigger than the topic of just psychosocial oncology, and we’re talking, even if we narrow it down to say serious illness, and how do we talk to children and adolescents about serious illness, prepare them, there’s such a discomfort in so many of these conversations, in particular, with our adult population as well. So, I don’t know that, so I’ve never really thought about it too much. We talk about this a little bit in how do we integrate death and dying, and talk to kids about how to normalize death, and normalize the feelings that go along with it, and grief.

But most school curriculums that I’ve been involved with are reluctant to add it to a core curriculum. So, occasionally, you’ll have schools that will bring in speakers to talk about it. Parents should need to be, and should be advised ahead of time that this topic is going to be discussed, and for some parents, they keep their kids home.

So, so it’s, I mean, it’s a, we need to normalize the conversations in general. And if we can normalize these conversations in society, then I think we have a much better chance of being able to have them in the classrooms, and normalize it for kids. But when families don’t want to talk about it, even when somebody’s seriously ill, I’ve worked with so many families that still don’t want to talk about it, and don’t want to talk about goals of care.

And so, we have a lot of work to do in educating the general public, and in educating ourselves, and then I think we’ll have made some inroads in how do we talk to kids about it. But unless it’s happening in the moment, even when it’s happening in the moment, it doesn’t always, the conversations don’t happen, but unless it’s happening in the moment, I don’t even think there’s a lot of openness to, to talking about, well, this could happen, or this might, you know, you might.

If we touch on this in class, if a child does have a parent who’s sick, I do think an important part of how we care for that child is letting someone they trust in the school system know what’s happening, so that that child has a safe space to be able to go to, and doesn’t need to explain, just knows that they know what’s going on, and they can provide them with comfort and support.

I do think there are things we can do, and do better when there is a diagnosis within a family.
But in general, the general education, I think we have a long way to go around that.

Adrian Pogacian: Marianne, thank you very much. I’m glad that we finish on, let’s say, a positive way of doing things, of what should we do further. Wish you good luck with your course.
Thank you again for accepting my invitation, and have a nice day.

Marianne Arab: Yeah, it’s my pleasure. Thank you for, it’s an honor, actually, to be asked to do this, so I really appreciate that you trusted in my experience and knowledge to want to interview me and ask me these questions, and look forward to seeing the interview online.

Adrian Pogacian: Of course. Thank you very much.