Palliative care isn't just for patients – it's for families
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When a body is discovered 10 miles out to sea, it sparks a mind-blowing police investigation. There's a man living in this address in the name of deceased. He's one of the most wanted men in the world. This isn't really happening. Officers finding large sums of money. It's a tale of murder, skullduggery and international intrigue. So who really is he?

I'm Sam Mullins, and this is Sea of Lies from CBC's Uncover. Available now. This is a CBC Podcast. I'm Dr. Brian Goldman. This is White Coat Blackheart.

I want you to meet a palliative care physician who made a strong pitch to come on the show. Hi Brian, I'm Dr. Sammy Winemaker, otherwise known as Dr. Sammy, and I am a palliative care physician and I work in people's homes, which is a really special and unique care setting. Dr. Sammy Winemaker works in and around Hamilton, Ontario. In 2023, she and Xian Xiao, a palliative care researcher at McMaster University, co-authored a book entitled "Hope for the Best, Plan for the Rest."

It's their rallying cry for a paradigm shift on palliative care. Rather than tell me how she does it, I said, don't tell, show me. So, Dr. Sammy took me for a drive. So, I was hoping to Windex the windows of my office before you came in. Oh, okay. But I didn't get to Windex.

Dr. Sammy's car is her office because she's in and out of patients' homes. She and a small team of physicians, nurse practitioners, and a psychosocial counselor. Most palliative care stories are about how doctors help patients by relieving pain and other symptoms. Dr. Sammy is about to show what she does for loved ones. She takes me to meet the family of a woman named Shelly McCarthy, who died of metastatic thyroid cancer in 2022. On the drive, she fills me in.

She had one of the rockiest courses that I have bear witness to. She had...

multiple teams involved with her care. She had a head and neck surgeon involved in the team. She had a radiation oncologist team. She had a medical oncology team. She had a family practice. She had a neurology team and she had an orthopedic team because her

Her thyroid cancer was also in her bones. She had multiple surgeries because of her bone disease. She had multiple lines of treatment, including radioactive iodine. It was one thing after another. It was dizzying. And I wanted to introduce you to them because...

They represent a family who was just lost in the busyness of this illness and the number of teams that were involved in her care.

This particular woman was one of the first opportunities for me to be involved from the get-go and to have a longitudinal relationship with the patient and family. And it was completely illuminating. And I think about them all the time because really her care informed my future advocacy career.

It's almost like you have to read between the lines and help people understand what's coming at them in the form of data points, but they don't know how everything connects. Death is a moment in time and you're no longer here. Dying is the prelude and it begins for some a year before death.

person actually passes. Dying is not a moment in time, death is. Dying is a chapter. It's like a dimmer and not a light switch. So we're here and we are going to meet this family. We good? Yep.

Hi, Terry. This feels familiar. Yeah. Shelly's husband, Terry, greets me at the door. I'm Brian. Hi. Nice to meet you. Hi, Terry. Along with adult daughters, Tara and Molly. The living room is filled with reminders of Shelly. You know why I can't sit over here? That's Shelly's seat. One of the girls will take that, but we'll take another seat over here. Okay. Wow.

This is my seat. Terry, that's your seat. No, it's so good to see you guys. Yeah, it's really nice to see you. I don't typically get to see families afterwards and I don't go to people's funerals because I would probably be going to 10 a day, right? But I've thought about you guys so much. I drive by the street all the time. I feel like I'm going to cry. I don't... My involvement...

the care of your mom and you guys shaped so much of what happened afterwards so. So Brian this is Shelly. Happier times. When was that taken? That was in 2015 at my wedding. She was about three foot two.

Five feet exactly. An inch taller than her. And I let her know. And she was like a powerful CEO at that height. I loved it. Like we said in the obituary, small but mighty, right? Yeah, for sure. Small but mighty like Dr. Sammy and a registered nurse named Jen Morritt, who together helped Shelly and guided her family.

I'm Terry McCarthy and I was married to Shelley for pretty much 50 years. And I'm Molly McCarthy and I'm Shelley's youngest daughter. How old are you? I am 36. I'm Tara Kerr. I was Shelley's oldest daughter and or I am Shelley's oldest daughter, I should say. And I'm 40 years old. Pleased to meet you. Thank you so much for inviting me into your home. How long have you been living here?

I think almost 50 years, Brian. We were here for pretty much all of our married life. Wow. This is where we grew up, yeah. Shelly was a social worker by choice, spent her life in a variety of social organizations,

organizations including the Catholic Children's Aid Society always interested in making a contribution to the community. One funny story was while her father was a board member at the Catholic Children's Aid Society she organized and became the president of the union which caused some familial stress so she wasn't afraid to take a stand on matters. Shelly's first brush with thyroid cancer was in the late 70s when she had part of her thyroid removed.

In 2001, she was diagnosed with breast cancer. Tara, then 16, and Molly, then 12, both feared they might lose their mom. In 2017, Shelley noticed a lump on the back of her head. Her doctor said the lump was benign. Shelley was reluctant to get a second opinion. In a strange course of events, although it may not be all that strange, it was her hairdresser who said, this is no lipoma, you get this looked at.

And she went back, got referred to a specialist. He looked at it for one minute, didn't even biopsy it, and said, this is no lipoma. Walked out in the hall with me after the consultation and met her original head and neck surgeon, Ted Young. And Ted said, what's up?

He went into the office, we explained what had gone on. He stuck a needle in it that minute, had it biopsied. We were in Roatan in January. He phoned us in Roatan and said, you better come back. I take all the time you need.

The diagnosis was stage four thyroid cancer. And Shelley got referred to Dr. Sammy. So tell me about the first time you met Dr. Sammy. The first time I met you. You're Molly. I am Molly, yeah. Sammy came to the house with Jen, I think, the nurse. And I think it wasn't too long after mom's diagnosis when we were understanding that it was terminal. You know, of course, we hoped that that wouldn't be the case, but...

We were able to sit down and as a family in this room here, as dad said, we've been here our whole lives. So in an environment that was safe for us to speak openly and honestly about where we were then and what might be kind of coming down the road for us as well. And Sammy kind of gave us a metaphor too that we were reflecting on of this, you know,

kind of like a hill mom was at. And we were not on the downward trend at that point. And I think that was really important that you and Jen could be with us from the very beginning so that we could kind of prepare. And then you kept coming. And that was so important. So what Sammy tells me is that you were proactive and inquisitive about

from the very first visit. Have I got that right? Yeah. I think we always knew when Sammy and Jen's next visit was going to be. Both Molly and I were in Toronto at the time, so we would make arrangements to come in and be here at the family home. And we would talk about some questions that we had as a family, and then I think a lot of times Mom and Dad had separate questions or Mom would have her own questions that she had prepared. Yeah.

And it was just a really calm, comfortable environment where, you know, we felt very safe to ask anything. The hard questions, the easier questions, the complicated questions. It gave us...

really a good insight into where we were all at, not just mom and how she was feeling about it all, but all of us. What did you want to know on that first visit? I guess I want to begin by asking, what did Shelly want to know? I think Shelly wanted straight answers. You know, it's funny, Brian, we're all reasonably, and Shelly included, well-educated. But even us, with all our advantages both shared,

sort of academic and personal, we felt swamped. We were absolutely convinced that the health care system was fragmented and compartmentalized and that there was a heck of a lot of time and energy and emphasis put on physical care at end of life, but not nearly enough on communication and support. And what Sammy and Jen provided us

to us and to Shelley especially. Molly laughs because she knows her mother liked to be in control. The gentler way to describe that is she wanted to maintain her dignity and her autonomy and she wanted to be a full participant

in the decisions that were being made. And she made her wishes known to us and others well in advance. And right to the end, she died at home.

with us, fully cognizant of having her wishes met and being heard along that journey. It was absolutely devastating and terrifying when we found out that this time, this cancer, it was terminal.

And I remember the first time when mom and dad said, we're going to meet with the palliative care team. And it was so early on. We had just kind of found out that it was terminal. And I remember thinking, what in the world are we doing? This is too soon. But no, it was exactly what we needed. And I'm so, so grateful that we had them from the start.

because of that open environment, that ability to talk through those difficult things and ask the questions. And so we all felt like we were all on the same page and it really put us at ease. And so what was really scary in the beginning ended up being something that I personally, and I'm sure we all did, we looked forward to having our meetings with Sammy and Jen. Yeah.

And I think one of the things in that first conversation that mom was concerned about being who she was, was not just about herself. It was all of us. Well, how are we all going to go through this and how are we going to be after she's gone? And so we really, we were able to talk about, you know, the time we had remaining with her and, um,

what she wished for us after. And I think that was also such a key part of the discussion over the years was, you know, how do we handle the death when it happens? She wanted to be at home and we wanted to give her

And we wouldn't have been able to do that without the palliative care team, right? Without being able to call Sammy or Jen, right? In those last few weeks of life when we were caring for her. And it was so important to us that we were able to honor that wish of hers and

And we were able to prepare for, again, what her wishes were when she was gone. You know, wanting to be cremated, where we spread the ashes. And we knew when the moment came that we could call Sammy and Jen, right? In the throes of it, in the minutes and hours after her death, right? When everything is so surreal, you're reeling emotionally. You can't think straight, right?

We knew we just had to call that same phone number that we've called so many other times before. We didn't have to have EMS or police, strangers coming into the house investigating. We didn't have to have the coroner here. It was so personal. We didn't have to think. We already had those things in place. We'll be right back.

I'm Katie Boland. And I'm Emily Hampshire, who didn't want to be here. On our new podcast, The Whisper Network, we want to speak out loud about all the stuff that we usually just whisper about, like our bodies, our cycles, our sex lives. Basically everything I text to you, Katie. So this is like your intimate group chat with your friends. And we can't wait to bring you into The Whisper Network. This journey is a nightmare for me. I'm doing it for all of us. So you're welcome.

You're listening to White Coat Blackheart. This week, the late Shelley McCarthy and what palliative care meant to her family. From connecting the dots of Shelley's complex care to giving her husband and two daughters time and space to talk about her impending death. That Dr. Sammy and team worked with the family for four years seems extraordinary, especially since 40% of Canadians with a life-limiting illness do not get palliative care.

I wanted to ask Shelley's husband, Terry, what made the family comfortable talking about death. As advanced a society as we think we are, we still fear death to the point where it paralyzes us. As a society, we don't manage death well. We manage it extremely poorly. Molly's gone through a personal experience where...

immediately following a death without any offer of palliative care, there was complete chaos in the house because there

was no assistance in planning, in directing people about the appropriate response. As we learned, Molly McCarthy's father-in-law had passed away only a month before our conversation. The experience was fresh in her mind. He was ill for a few years with gastrointestinal disease and

My mother-in-law and my father-in-law were never offered palliative care involvement at any point in his journey. He died at home in his bed in the same way my mom did, but the lead up to that was so different.

And the aftermath was extremely different. As he approached kind of this decline, they didn't have a second conversation with him about a DNR. So he did not have a DNR. And what I didn't understand that to mean was when you die at home without a DNR and you are not in palliative care and you call 911, who comes through the door?

is the fire department very quickly within minutes in a very different style than Jen came through our door, right? It was chaotic and that was followed by police and that was followed by them staying for hours doing an investigation. They didn't qualify it as an expected death because he wasn't in palliative care. My mother-in-law had requested palliative care on the Friday and he died on the Monday. And so I

we were left with a re-traumatizing event in the minutes and hours after his death. So I really saw in that moment the difference of care between having palliative involvement, what a difference that would have made for the family to prepare, to have the conversations, to do the planning about who are we going to call when

when this happens. And I think it could have been a very different experience had they been offered palliative care involvement, had there been communication about where this is going for him. As Molly says, a palliative care team also helps the family by removing the implications of a surprising and even shocking death.

Another reason why she thinks every family should be offered palliative care. It's very hard to see a loved one in that situation and think, okay, here's the time, right? And hindsight, yes, I think it was clear he needed palliative care involvement. But to actually be the one having to request it is much different than being offered it. And they didn't get the offer. And I think that was a big disservice to

to him and to the family and has ripple effects in your grieving process. Like being traumatized by what happened? Yeah, like being traumatized by what happened, by having unanswered questions, by really wondering could something have been done differently? Whereas I think having the involvement of the palliative care team, one of the comforts we get is we gave mom the death that she wanted. And we can take comfort in knowing that

It was not easy, but we did everything in our capacity. Mom wrote a list of things she wanted to accomplish, goals, and she accomplished them. What were they? What were they?

I think it was to see me graduate from my PhD, which she was able to see. I think it was to see her eldest grandson start school. Yeah, exactly. It was to see dad retire. He didn't do that, but that was kind of outside of her control, one of those things, right? I got engaged during that time and I

I got to have a special conversation with her, I think the day before she died, you know, they kind of people at the end of life go through these,

periods of lucidity and then kind of delirium. And I knew that because Sammy had told us that and we all stayed very close to her. And I got her at a period when she was lucid and we got to have a really meaningful conversation about myself. And I told her I wanted to be a mom like her one day if I was

was so lucky to have kids. So, you know, and I really cherish that conversation that we got to have that conversation and that I knew to look out for those opportunities at the end of her life there. Terry, I want to ask you what it meant to have Dr. Sammy involved to help connect the dots as she calls it.

Somebody needs to be in an interpretive role. That person needs to be both knowledgeable but also sensitive.

You know, when you're undergoing multiple surgeries or multiple treatments, whether it's, in Shelley's case, radiation or whatever, people do their jobs sensitively. But, you know, it's very difficult for them to display true empathy because they don't have the big picture and because they're doing it

I'll say an assembly line kind of job. I mean, the health care system has to be efficient, so we all get that, and they do that very well, and the medical system, you know, in an acute care way, operates very well. But in another way, in that communication, in that understanding, not so well.

Can you give me a time when you needed answers and you called Dr. Sammy and you were able to get them and you're thinking about somebody else who might not have had

that kind of access. Medication management was the big one. And we did call Sammy when Shelly had an adverse reaction to opioids. To be honest, Sammy, I can't remember whether you gave me the advice or you put me on to somebody else, but we got answers in the middle of the night. And I have to say, we got, in that case, I think, I got the personal phone number of Ted Young, who called back, you know, within two minutes. Yeah.

Terry mentioned Dr. Ted Young, Shelley's original surgeon who removed her thyroid cancer in the 70s, a connection they haven't forgotten. And nobody expects extraordinary care like that, and I don't expect it, but I recognize when we do get it. And that call two minutes later saved Shelley a trip to the emergency department. Without question, without question, yeah. I'm getting the sense that maybe there were a few times like that. There were, yeah, yeah, there were.

Yeah, even just in the end of, you know, I think it was her last day, she seemed very distraught, very uncomfortable. And we made a call to Jen and explained her symptoms. We didn't realize at that time it was very, very close to the end. But Jen gave us...

two or three things to grab for her from the pharmacy and Molly and I went out and grabbed them because we were there to do everything we could to make her comfortable right up until the end and Jen and Sammy always had the answer to what those things would be. How has this experience changed your own view Molly and Tara about about your own mortality?

Yeah, it's definitely changed my outlook on it. I value the privilege of getting palliative care. We have two young children and it made me think about one day them going through this with me and or my husband and how peaceful it was for mom and with mom and how that's what I would wish and what I would like to plan for. Death is scary and it's traumatic.

Even when you know it's coming, but it's much different than it would have been had it been sudden or unexpected. Sammy and Jen used a term called anticipatory grief, and it's such a perfect term for what we experienced. That time that we had to process everything before the actual time of death was just...

So valuable. So valuable for all of us, including mom. Molly, how about you? Yeah, I agree. I actually remember...

few days after mom died dad and I were just walking into the grocery store and I said to you I think I'm a lot less afraid of death now That is what the palliative care experience gave to us it gave us the opportunity to sit with the reality of the situation the pain the hurt and not Run from it, which I think we do as a society we We push it away

Dr. Sammy is with me in the room hearing Shelley's family talk about how she helped them. She would be so proud of you guys if she could listen to you. This was truly a family affair. This is a beautiful, amazing family that potentially could have experienced an unbelievably chaotic and fractured illness journey. And I think when they are advocating for palliative care,

That's the container in which they know it. But I think they're actually advocating that whoever touches these situations should invite open, honest, realistic conversation. And if it comes through palliative care, fine. But it's no excuse for all other care teams not to know how to shepherd these things. So, yeah.

I want to thank you for inviting me into your home and telling me your story and your experience in memory of your mom and your wife. Thank you very much, Brian. Thank you for the opportunity. Thank you. Thank you so much. That was amazing. Amazing. Health Canada says these days more Canadians are getting palliative care. But just 13% of Canadians get the palliative they need to die at home.

which makes what Shelley McCarthy got an incredible exception. In the coming weeks, I'll take you to meet a man with prostate cancer on his very first palliative visit with Dr. Sammy. That's our show this week. Our email address is whitecoat at cbc.ca. White Coat Blackheart was produced this week by Jennifer Warren with help from Stephanie Dubois and Samir Chhabra. Our digital producer is Ruby Buiza. Our senior producer is Colleen Ross. That's medicine from my side of the gurney. I'm Brian Goldman. See you next week.

For more CBC Podcasts, go to cbc.ca slash podcasts.