9th of July 2021
Roy and I met in Atlanta at the Conference on Death Education and Counselling offered by ADEC in 2018. However, we got the opportunity to chat at airport on our return home, waiting our flight to Toronto and the storm to pass! Roy is a very interesting person not only because of his rich bio in the field of palliative care, but also, and more, because of his kindness, and his capability to make people feel comfort around him. I strongly believe that the knowledge and the experience of an expert in the field, would impact to the discussion about palliative care in Cyprus. Roy was more than willing to help and here we are, chatting online in a Friday afternoon (Cyprus time).
How would you define Palliative Care in a few lines?
In my understanding, the definition of Palliative Care, in layman’s terms, is to provide comfort, pain relief, and appropriate clinical attention to people who are nearing death and who are dying. To manage pain and to manage clinical symptoms and to be experts at helping people to not die in pain, and to manage their illness. But also, to help people to adjust from a living process to a dying process.
Is it only about the people that they suffer from the threatening illness, or is it about their families as well and friends?
It’s about the family—so when I speak, I’m always speaking in a holistic sense. I’m speaking with the whole family – whoever. It’s not just the patient, but the whole family. Oftentimes, in our medical system, the emphasis tends to be on the client or the ill person and sometimes the family can be left a little bit outside of that. We are trying to do whole family care, whole-community care. But in my experience, it very often ends up being a little bit more directed toward the person who’s sick.
How did your involvement in this field come about?
Well, one aspect of palliative care that I didn’t just mention is the grief and bereavement program which in Canada’s is a best practice approach to palliative care. And that includes post-death care. So, we are supposed to be caring for the family. When the person is dying, being present and responsive during the death…But then we provide death and bereavement care after a person is gone to the family members and loved ones and friends. So, my entrance into the palliative care world was through grief and bereavement. I became grief and bereavement coordinator for a regional hospital in Halifax, in Nova Scotia, with about probably 700 000, maybe 500 000 people in our catchment area. We’re seeing 1500 deaths a year. My job was to provide grief and bereavement support to all of those people who wanted it. So, of those 1500 families, we offered a program that was connected to palliative care and I ran the program. That gave assistance and care to family and friends and loved ones of people who have lost somebody. So, that’s how I came in as a therapist.
I am thinking that it is a very sensitive and very special area to get into in the first place. Was that a dream from when you were a kid?
Well, I came at it through spiritual care. My background was spiritual care, so I am both a therapist and also a spiritual caregiver. I have a lot of experience working with people in crisis situations—in emergencies, working with people who have lost someone. So I had done a lot of grief work. I believe that most spiritual caregivers and chaplains have those grief and loss skills. Those are something sort of baked into us and so it’s a very natural move. I was actually in mental health before I came into palliative care. I was in acute mental health, working with highly ill people, then moved over into grief and bereavement. I can’t say that I was dreaming about it when I was a kid, but once I saw the job, I was like “that’s exactly what I made for.” I mean, I have all the skills and abilities, I have the spiritual component, I have a ritual component for doing memorials and understanding of the religious component of death for so many families. And I’m also a therapist. A clinical therapist, so I can provide that as well. I have a whole bunch of tools in my pocket, and I realised that it was the job for me, and it actually was. It ended up being the perfect job for me.
I was very aware of what grief and bereavement work looked like. I had practiced it. I knew. I had a fairly good idea of the kind of work I’d be doing, but I did learn a lot after I got in. I certainly came in with a pretty good, broad competent understanding of what was required by me.
What would you advise new entrants to Palliative Care?
In Palliative Care or in Grief and Bereavement? Because they are kind of two different things.
Aren’t those two involved in each other?
They are. But if you think about a palliative care doctor or palliative care nurse, they are not really psychosocial experts. Not really. They are good, but their job is very different. They are working with a lot of medications, they are working with pain control, symptom control, disease process, family dynamics for sure and logistics of dying; whether it’s in a hospital or at home… So, I think that’s the emphasis with doctors and nurses. And then I would say that social workers and therapists, like myself, are doing much more of the soft care, human care, which involves more presence and less clinical – technical skills—less tubes and wires and fluids and pills and more presence and therapeutic prowess. But mostly I think presence. So, I would say that, in my experience in palliative care, we could sort of divide doctors and nurses into very left brain undertaking and spiritual care and chaplaincy and bereavement and social workers into very right brain work.
I know that there is a team supporting people who are working with Palliative Care. Is this support enough for you to let you stay in the field? How would you describe your personal resilience?
I mean it’s never quite enough. Right, you’re—we’re all burned out. We all have compassion fatigue. We all have vicarious traumatization, so you flux in and out of this state where you are doing ok sometimes, and then you’re not doing ok. And sometimes all of your colleagues are burned out at the same time, so it is very important to have care outside. I have a good psychiatrist outside, I have colleagues who are trauma informed, who work on the outside as well. So I’m continually seeking out help and support outside of the hospital, but I think being under-resourced is a congenital problem with hospitals.
Was there an incident that made you feel like quitting or changing the field?
The only thing that made me ever think about quitting was bad management. It wasn’t the work itself. I love the work. I love the people. I love the challenges. But when upper management wasn’t understanding the work that we were doing and was bringing down edicts and rules about how we should operate that weren’t really helping our clients, that were actually decreasing my ability to care or hampering my work, that’s what made me think of quitting. Not the work itself.
That reminds me of the chat we had at the airport. You told me that you decided to travel outside Canada for a long period of time… Was that a vital break for you?
Yeah, I couldn’t stand my manager at that time. I just couldn’t. She was terrible. She was an awful manager, and she was harming my program. She was harming me. I needed to figure out how to be healthy and still work for her and I did figure that out. By the time I went back I figured out how to work alongside her. But, yes, I’ve needed breaks. In the course of my career I’ve taken three sick-leaves of about four month each; when I just couldn’t take it anymore. I had anxiety or different levels of depression, some illness, some sort of somatic experience. So, I’ve been aware that this can be very deeply traumatizing, indirectly traumatizing wor, Yu are going to get messed up from time to time and you need to prepare for that, to understand that’s ok to go down. You need to take breaks. The hospital is not set up to allow you to trickle your breaks; you either have to fall apart or you are working. There is no in-between.
Thus, it was your own decision to take these leaves.
It was my doctor’s decision when I took a stress leave, but this last one, the long one, when I took a year off, I took a leave of absence and that was for my mental health and my wellbeing. I just needed to be away from the work for a while and work on myself and heal up a little bit. And I did that and when I came back. I came back pretty certain that I needed to stop working in palliative care. I’ve spent enough time in it. I’ve done 12 years in it… And not just in palliative care. I also have a consulting private practice outside. I see clients, sort of the worst of the worst in terms of death and dying—homicide, suicide, tragic loss, sudden loss… So I just decided that I needed to not be working in the hospital. I dtermined that I could only take so much pain and suffering and that the hospital would be the thing that would go.
So, the biggest challenge for you were not the incidents themselves but the stress that bad managing brings.
Almost everybody that I know doing compassionate care eventually pays the price. Everyone gets burned out, everyone gets indirectly traumatised or vicariously traumatized, everybody has compassion fatigue. It just comes with the territory. So, you just have to figure out, it’s our job as professionals to figure out—how much of that you can swallow, how to heal yourself in that, how to maintain functioning in that. But, I wouldn’t say that I think I got very good. I am at the end of my career, I am very experienced therapist and a very experienced clinician. Which means I know how to navigate a lot of pain and a lot of families suffering without necessarily falling apart all the time. I think a younger clinician might not heal as well. I’m now interested in having more control over who I see and the work that I do. I’m going to change the work a little bit. I’m gonna deal with a little bit more general therapy like for growth – growth issues, not just dying and grief but rather growth issues. Helping people grow as human beings. I think what would be really refreshing for me is to not constantly be dealing with deep sorrow and trauma.
Let me ask a question about the volunteers in palliative care. Is there a special training they are attending? How does it work?
There are two volunteer programs. I run one and there is also a volunteer coordinator who runs a larger program for palliative care and cancer care. We have a combined program, so she coordinated all the volunteers that work on the unit; heping people out, bringing them water, helping with their needs, helping families navigate the floor, getting food, and just talking. So we have always two volunteers on the floor, and we also have a place called The Sunshine Room, which is a supportive place for people with cancer where they can get their hairstyle, they can get a wig made, they can get a massage or Reiki treatment or physiotherapy and they can go to group support there.
My program was a phone call program where every family receives a call for support after a death. We also mailed out letters for them.
All these sound very practical and somehow typical types of help. Don’t you believe that volunteers can have supporting conversations with grievers?
For sure that was happening! No, I wasn’t saying that that wasn’t part of it. That’s a big part of it for sure! Being companions, sharing the ups and downs of dying… But I wasn’t as involved in that program. That was not my work. My work was with the phone, the phone volunteers and they provided a lot of direct support as well.
In your experience, are people in Canada dealing well with issues of loss and grief or is it still a taboo issue?
Yes, I think it still is. Even on the floor, even in the Palliative Care Department they call dying End Of Life and they short form it “EOL” so they don’t say the word death. They very often won’t, when doctors are talking to each other won’t say this person is dying. They’ll say “they are at the end of life.” So, there’s this way in which we disguise death even in the Palliative Care Department. They won’t talk about dying and death, though they very often will say “we are going to try and make you comfortable right to the end. We are going to try and give you good quality of life right to the end.” So, here’s how this works and I want to say this to you because I even think in the Palliative Care Department it’s deeply deeply taboo. I think dying in palliative care here in Canada is when your organs fail. That’s what dying is. It’s not the psychosocial process of understanding that you’re letting go of your family and that you’re letting go of your attachments, and that you’re moving on from this life and from this planet. And that you’re saying goodbye to everybody. That’s not what dying is. That’s living and you’re expected just sort of like bounce along there and live and you’re really doing as good as you can living your “best life.” And then, when your organs start to fail, that’s dying. So, they’ve taken the idea of dying and made it purely biological.
This is not helping…
This is not helping! This is a sign of being fragmented – a fragmented idea of dying – of what dying is because many doctors and nurses don’t like to talk to people about death. So, it’s happening in the palliative care units, but it’s also happening in the community at large, which is why it’s happening in palliative care units. It’s part of the culture.
And here it comes the question on children and how ok it is to talk to them about a relative who is dying.
Well, the research, as you know, and all the evidence and all my experience suggests, that kids are much more at home and comfortable with death than adults. Because we adults are hung up on death and we are the ones that try and protect them from death and shield them. But the reality is that having an awareness of death inoculates kids from fear of death in the future. Right?
Not only in future but in present as well! Letting them say goodbye is part of their grief process and we do not actually protect them by hiding death… I have heard lots of stories about kids that weren’t given the opportunity for this last goodbye – even to their parent!
This is very common here as well. There’s a lot of parents coming into my office asking “should we bring the kid to the hospital, should we bring our son to see grandma? My 9-year-old son says he wants to remember grandpa the way he used to be.” This is a really powerful one that people use now. It’s like I want to remember grandpa the right way and this isn’t grandpa. So, in other words, once you start dying, you are not grandpa anymore. It’s an incredible thought and parents will go along with that. In fact, a lot of adults will say the same thing. I don’t want to go in to see this person because I do not want to remember them that way. And it’s like once someone is dying, they stop being the person anymore. They become this other thing and this is really unhealthy.
I’m sorry to realize that ‘remembering the way people used to be’ is an international thought…
It’s an international problem for sure. I mean, some cultures must be better at it than ours. I was at a funeral yesterday for a young child… The child was five who died, a traffic accident, and there were lots of kids there obviously. So, I’m at a table with five adults and there are two kids sitting at our table and they’re drawing. The ceremony begins and a person starts talking about the dead child, and one of the boys at my table becomes upset. He’s sad about his dead friend and he’s just sitting there. His mother is focused on words being said at the ceremony, and she doesn’t notice her son. And this is the other thing about kids and death… Young boys get extra extra extra left out. Their emotional needs go unrecognized. The mother did not recognize his sadness. Young boys are left emotionally alone so much more than young girls are. A young girl can be expressive and sad and ugly and come to mom and have a doll—and a little boy is just left to deal with it alone. I was so struck by that. Not only do we need to invite kids into death, we especially have to be aware of our young boys because they really get extra pushed out of the experience or pushed out of access to emotional acknowledgment. Young boys aren’t often allowed to be vulnerable. Especially in public. With that young boy, I was doing everything I could across the table to get his eye contact, but he would not look at me. It was going to be so shameful for him to look at me because his mom wasn’t looking at him and he definitely wasn’t going to look at me. And so after about half an hour he finally just got through it alone and started to draw pictures, but he was unacknowledged that whole time. And I thought, this is damage, right? I’m watching it happen – a little boy not be recognized in his pain.
The truth is that we are afraid to talk to kids… Especially boys learn to be ‘strong’ and teachers are afraid that if they offer their support they are going to be rejected somehow.
You have to be skilled with kids because kids are kids and they really watch us and they’ve taken all their cues from us. So if they know they are going to get more attention by not noticing things, then they’ll do that. They just want attention. If it’s better for them to be strong—if they get more attention for strength—they’re strong and unresponsive, they’re going to do that. If they get attention, good attention, positive attention for being gentle and tender and demonstrative, then they do that. I’ve worked with a lot of families where I’ve got a real shut down little boy when dad dies. Boys are just so shut down because there’s so much shame that’s implicitly taught. It is implicitly taught to young boys that any tenderness and any softness is shameful. So they bundle it up and they brace against it and they are not willing to be drawn out now because dad oftentimes told them “be strong for your mom, you go on with your life, don’t be sad, go out there and play and have fun and do great in sports…” That’s the kind of thing that some parents say to their boys, and so boys take that in and then they think they’ve got to be strong and not show any tenderness and not to be sad! I got a big piece of concern for boys. I’m not as worried about young girls. It’s the boys I worry about.
I have the feeling that this has started changing a little bit. Of course, each case very much depends on the family or the community…
I think you’re right. A lot of our discussion about patriarchy and toxic masculinity… I think it’s beginning to soften and we’re beginning to understand that it’s OK. I think that’s all helping to shift our conversation around how a boy should be. Thank God!
That’s a very big discussion to do! I would like us to conclude this discussion by asking you how you would like to see Palliative Care or grief support changing in the future?
OK, that’s a good question! One of the things I think that really is, well, a few things. I think it needs to be family-focused. I didn’t like to be “bereavement care.” I wanted it to be family care. I strongly strongly advocated for bereavement and grief care to be taken right off the sign and just be family care. You come to the hospital, can you come to Palliative Care, you get family care. We are going to take care of your family. So that was one thing. I think we need to train our nurses and doctors with presence. To be present. To understand that the primary healing resource is the human relationship and that all the tubes and wires, pills and special sauces are all extra add-ons. They are important, they’re really really important but is that human relationship that they crave, people seek to be seen and understood. They seek to be heard and felt like they have power and agency and voice and that they are not just some sort of annex to the care that’s going on. That they’re really central. It’s their home. It’s their house. It’s their life and that we’re all working together on that. So, that would be two really important things. And also a deeper awareness of the spiritual underpinnings of death and dying and I don’t mean a particularly religious concept, but that there is a Meaning. Like, Viktor Frankl—kind of like that. There is a meaningfulness around dying that we’re not getting yet, we’re not understanding it yet. You can help families make meaning out of death. That’s very healing for people and it helps their grief to be less toxic and less or extended or less complicated or less traumatic. And if can do that, I think as well, we help people to start seeing that a lot of care isn’t about trying to keep the body alive, to get more time, but rather to help people understand that death is natural and good and, maybe, an earlier death might be a better death.
