In this short extract from the book Conversations on Dying, Dr. Larry Librach and author Phil Dwyer are discussing one of the most onerous psychological impacts affecting cancer patients: feeling like a burden to caregivers, friends and family. In his final few months, Larry found himself falling foul of the same problems he’d seen his patients face over the years, and had to argue himself out of the corner he was painting himself into. The Interview took place in May 2013.
by Phil Dwyer
It was a busy week for Larry. On Thursday he recorded an interview about his cancer journey with the Canadian Partnership Against Cancer (CPAC) for their The Truth of It video series. The Truth of It interviews Canadians who have been diagnosed with cancer and asks them to share their story, so others can learn from their experience. On Friday Rick Firth, board executive at the Canadian Hospice Palliative Care Association (CHPCA), was due to call in to drop off the plaque for the Balfour Mount Champion Award, which Larry had been awarded in April.
We wouldn’t have our normal hour, but it hardly mattered. Larry was clearly bouncing back from the chemo, and was relishing his regained energy. He didn’t rule out going back on the chemo completely, but it seemed to me he’d take some convincing. I’d never seen him so insistent.
I knew we wouldn’t have long to talk, so I focused our discussion on a topic that had been playing on my mind for the past several days. We’d talked about how crucial it is to communicate with family and loved ones, tell them how you’re feeling. To be truthful, and not to withhold information. It’s something Larry mentioned the first time I visited. A weakness, he’d discovered, even he was prone to. I’d salted it away, meaning to ask him to expand on it.
“You said you’ve found yourself falling into the same patterns and behaviours you’ve seen in other people when they’re sick. You’d noticed you pushed Faye and the family away, creating an emotional distance. You caught yourself and talked yourself out of it. But it’s interesting that even you, a seasoned palliative-care physician, fell foul of this impulse.”
“That’s part of the conversation Anne and I are having.” Anne Langlois was a former colleague of Larry’s at the Temmy Latner Centre for Palliative Care (the centre Larry co-founded, which provides home-based palliative care in Toronto). “How much do you let go, knowing the person who is receiving the information may be hurt by it? But the person at the other end may actually want to hear that information.”
For Larry this attitude, this way of thinking, arises from the patient’s anxiety. We create for ourselves these chimeras of the imagination and they dominate our thoughts. The monster tells us we’re a burden and we believe it. It tells us we’re useless, no longer needed, part of the past; a useless, used up, and diseased body about to become a cadaver.
“David Kendal (Larry’s palliative care doctor) always catches me with that word, burden, because we use it all the time. You know, ‘I don’t want to be a burden to my family.’ We often say the reason for admission to hospice is because the patient doesn’t want to be a burden to their family. Assisted death, same thing, ‘Don’t want to be a burden to my family.’ Well, what does that actually mean? If you’ve got a strong enough family and you’ve got coping mechanisms and you’ve coped with crises before, you have an interdependency that’s really important for both sides of the equation.” Larry paused, brought the discussion back to his own situation, his own disease, his own family. “So it’s important for Faye (Larry’s wife) and for my kids to know how I’m feeling. But it may not be as important for my grandkids to know.” Not that you should shield them from knowing you’re ill. Larry had always been very clear about this. The instinct to protect our children from the realities of the situation will certainly have negative repercussions later on, and may cause immediate problems. Children are far more perceptive than we give them credit for. They probably know more about the situation than the adults around them would like to believe. Still, Larry said, they don’t need to know every detail, there has to be “some protectiveness there.”
“And you need to share the things that are important. If you are having a down day people will see that. Because when you keep things inside, what you see happening is people become depressed. They become irritable. They become angry. They become more demanding. They actually become more of a burden and they withdraw emotionally. There’s no hugging, there’s no kissing, there’s a sense of trying to protect [their families by not] being a burden. At the same time they are becoming more of a burden.”
It was tempting to ask, “Is that it?” As if truth, honesty, and openness couldn’t possibly be enough. Isn’t the pattern too deeply woven into our natures? I recognized the pattern, remember my twin sister Sally telling me that our brother, John, withdrew when he was told his cancer was terminal. His conversation collapsed. Questions about her daughters, their jobs, their lives, dried up. He’d respond to her questions, when she asked them, but his answers were monosyllabic, more grunts than answers. Of course, the tracheotomy didn’t help. It was another barrier to communication. One that John no longer wanted to surmount.
I’m convinced John believed he acted with the best of intentions. He cut us loose so he wouldn’t drag us down with him, like a mountaineer who cuts his line rather than pull his friends from the rock face. Still, despite the fact that I’d witnessed the damage this withdrawal can do first-hand, I wanted a more complex solution to the problem from Larry than simply “communicate.” Something perhaps involving complex instrumentation or brain surgery. Could this really be how we break the pattern? Larry insisted it is. And although it sounds simple, that doesn’t make it easy.
“What David Kendal said to me, and what I’ve said to patients over the years, is this withdrawal doesn’t work. You fall into the trap, think you’re a burden and that maybe it would be better just to push off and be admitted to hospital, or to not talk about it and cry yourself to sleep….That’s all fine, but it doesn’t work. It doesn’t protect you and it doesn’t relieve their burden.”
There’s another dimension to this too: the burden the patient has to carry. Larry had first-hand experience of this. During his ordeal with jaundice he became increasingly frustrated with the system, his doctors, his inability to control events and their outcome. This sudden helplessness is frightening as well as frustrating, but patients typically suffer it in silence, withdrawing, holding the turmoil in.
“If you withdraw, you increase your burden on yourself. Talking is important. The people that can’t talk about it really, really suffer. I’ve seen that over the years. The people who can’t talk about what’s going on and their frustrations really suffer. And the system is frustrating. But all systems are frustrating. When you find a perfect system let” — Larry paused briefly, because he remembered this ends “let me know,” which didn’t quite work anymore since his diagnosis — “somebody know.”
But isn’t there also a cultural dimension to this? Larry’s already said this open attitude he promoted is not exactly the way of Jewish orthodoxy. Practicing in Toronto, one of the most culturally diverse cities in the world, surely must have given him a unique perspective on the cultural spectrum?
Larry rubbed the end of his nose with his knuckle. It was something I’d noticed before — a little physical tic you begin to see when you spend long enough with a person. He dragged one of his anecdotes up out of deep memory.
“I had this one patient, she was Portuguese. And she was dying. Getting quite close to death. And the family was really quite distraught. They called me into the living room when I arrived. This was before I’d even been in to see her. And they said, ‘We know she’s coming to the end, we know she’s dying. But please don’t tell her.’ So then they usher me into her room, and the curtains are drawn, and there are candles burning. And there were women, professional mutes, standing around the bed.” The use of mutes — generally women, who are paid to mourn a dying or dead loved one — is a forgotten tradition, even in Europe, but they are still occasionally used by some more traditionally minded families. “She tells me she wants to speak to me alone. She waves the family out. She
was quite weak, but she still had the strength for that. She gestures to me to move closer, and she says: ‘Doctor, I know I’m dying, but please don’t tell my family.’”
He leant forward for his sippy cup. “So, yes, it’s an issue for sure, and not talking about things really increases your burden. There are cultures that don’t allow you to talk, but there’s always somebody in a family you can talk to. There’s always some way you can unburden yourself. But unburdening myself to my fourth cousin is not the same as unburdening to Faye. Unburdening to my rabbi is not the same as unburdening to my spouse, or my daughter.”
“So, as a physician, how did you cut through that?”
“Just by pointing out that it’s a burden of love. It’s a burden for families to share, not a burden individuals need to bear alone. We defend our family together, we promote our family together, we grow together. And it’s that togetherness that protects you from the burden. People accept the burden. It’s part of the love. There’s always going to be a burden to love.”
I wondered what he meant by that? “A burden to love?” It’s hardly what we expect of love, hardly what we imagine it to be: a burden.
“Once you get married you accept the burden that you are now two people and that has to be considered in whatever you do. If you have a family, then there’s three or four. There’s extended family, brothers, and sisters that have to be dealt with. But if you don’t share that together there was no point in getting married. And life is never a straight line. Things change. When you first get married it’s very different to your life three or four years later, and that’s hugely different to your life forty years later. But the love, that’s still core. I used to ask families, what do you mean by burden? What’s the burden? And they’d answer, well, it’s the physical burden of looking after someone who’s sick. So I’d tell them that’s why we are here to help you. We’ll help as much as we can with the physical burden. We can’t take it all away, but we’ll help. So then they’d say, well, it’s watching him suffer. Or if I was talking to the patient, it’s them watching me suffer. But you do that. You want to help. And so I usually took them back to a time where they coped with another crisis and said, how did you get through that? How did you manage that? That was a burden at that time, and look, you managed that. This is the final burden. But afterward, that burden pays off because you’ve helped somebody. You’ve reduced some of your own suffering in that way too because things were more open and your grief will have been much less. And at the end of it you will have a sense of satisfaction. The thing about home palliative care that’s very different than you see in hospitals is a sense of satisfaction that families have in providing home care. Now, we don’t recognize that. We don’t support them enough and give them enough psychosocial support. The system is crazy that way.”
Ahh, the system. The way we’ve medicalized death, swept it out of sight into clinically controlled environments, ignoring the human dimension, the gut shreddingness of the emotions that tear into us at such a time. But although we imagine it that way, the reality is surprising. “When I first went into home palliative care, I expected I would go to pronounce somebody dead and there’d be rending of clothes and sackcloth and ashes and crying all over.” I couldn’t help but smile as Larry demonstrated for me by flailing his arms around his head, his sudden animation startling, driving me back into the safe embrace of the armchair. “But more often than not there was just a simple peace in the family. There were some tears. You’d go in and say hello to the family, you’d check the patient out, because everybody wants to make sure the patient’s dead so you have to at least do the pulse, look at the pupils, are they fixed and dilated, close the eyes, touch the patient. I think it’s very important that physicians, when they pronounce somebody, touch the patient and show people it’s okay to touch somebody who is dead. There’s nothing nasty about it. But then you go into the kitchen and they would often present you with a glass of Scotch or something. Or a tea, or cookie, and there would be, as well as the tears, some laughter. ‘Well, mom would have liked this, all of us standing around here.’ Or there would be that pathos. Which is very different than what you see in a sterile environment like a hospital. Hospices are different and palliative-care units. But it’s that sense of satisfaction they had in looking after their loved one.”
Larry was careful to make sure they understood the emotional heft of what they’d done. He knew they would be confused and in shock. And there’s so much to do when somebody dies, a funeral to arrange, bank accounts to close, things to dispose of; an avalanche of details. “But I would encourage them to stop for a moment, to realize what an important thing they have done. Not only for the patient, but also for themselves. Because they now know what dying is like and we are all going to have to face that. Now they can teach their children. So when people are worrying about burdens I say yes, it is a burden. But it’s a burden you accept because you are family. And yes, if it becomes too burdensome we will need to look at ways of supporting you and maybe a palliative unit, but that’s not failure.”
It’s easy to underestimate the traumas that caregivers experience. The emotional and physical impact of caring for a dying loved one, the sheer exhaustion of it. Many, probably most, try to cover it up, to wear their bravest face when they’re in the presence of the dying, but it’s impossible to hide. Most dying people understand their caregiver’s limits are being tested, which adds to the weight of the guilt and helplessness they feel themselves. It’s the most common problem people face when they’re dying, Larry said. “And yet a hundred years ago it wasn’t that way, because you expected to maintain the burden. There were no hospitals. You expected to stay home and have granny at home until she died.” He’s right, of course. We moved death out of the home in the twentieth century. According to Statistics Canada, almost 65 percent of deaths in Canada take place in hospital. So we’ve tidied death away in sanitized, sterile environments that give us the illusion we’re controlling it. Or worse, prevent us from needing the illusion at all anymore. We’ve created a new illusion, that death is not all around us all the time. That it’s diminishingly rare. I’m sixty years old and I’ve never seen a dead body. Both my parents and all of my grandparents are dead, but I never saw them after their death.
But here we were again, talking about the system. I was interested in Larry. “So what was it exactly that you caught yourself doing, that you’d seen your patients doing through the years?” I asked.
“I avoided conversations when I felt hurt. And there were several times when I wanted just to scream out and I didn’t do it because I didn’t want my family to be involved. Yet I needed the support at the time, particularly around those procedures, you know.” He was referring to the operations on his bile duct, and the fiascos that surrounded them. “I just wanted to punch somebody out! Even the nurses, when I think back, I had very little nursing support in the palliative-care unit. That’s because the budget’s been cut and all. There was only one nurse, the nurse in charge, who actually sat down one day and asked me how I was, and how was my pain, did I have any breakthrough pain? Did I have a bowel movement? This is your blood pressure and here are your new sheets and your robe. But there were times when I knew that I needed help and I didn’t ask for it. Being at home, I’ve been a lot freer with asking for help with Faye.”
That’s part of it then, a big part. Just being heard, being cared for. But there’s something else too: this belief that it’s weak to show our feelings when we’re overwhelmed. To be stoic in the face of pain and suffering is to be strong. It’s generations-deep, this attitude: be a man, take your medicine, stand tall, stiff upper lip, smile in the face of adversity. Larry learned to swim against the tide of such advice, and he said it did him a world of good.
“I just needed that support at the time. So I let it all hang out and I felt much better for it. I was able to carry on. If I had left it inside it would’ve eaten away until it came out and then it might come out in anger. It often does. Anger toward the health-care providers … that damn doctor he doesn’t tell me things and he doesn’t do this … and I know he’s keeping things back and they don’t care about me, I’m just a number…. You see this all the time, just blame the system. Sometimes the system has to be blamed but the system also has to listen to these complaints and has to be aware of the conflicts. You can’t shy away from them.”
And if it’s true that there’s no perfect system, no perfect patient, it must be equally true there’s no perfect family.
“Faye and I always joke about that, you know, it’s your crazy family, nobody is crazy on my side of the family and we look at each other and just laugh.”
What you may not anticipate is dependency. It’s another of our society’s strongest dogmas, to cherish and preserve our independence. No doubt this is linked to the “don’t be a burden” doctrine, but it’s also tied to pride, to our sense of self. The I who is master of my own destiny, standing up for myself, having and exercising choice. It’s arguably the best thing about growing up. We determine our own fate. We don’t have to rely on anyone else for anything.
“Becoming dependent was one of my big fears,” Larry said. “And I am dependent on people now. There’s no question about it. I’m dependent on the nurse to give me my injections, because my hands are so shaky I couldn’t give them to myself. I’m dependent on my kids to help support me. Faye, of course, but other family members, friends, all are vitally important. They don’t mind doing it. I know that as I get sicker I will call on them to do a little bit more, and that’s what I will need. I need people to take me to chemo. I need people to take me for blood tests, because I can’t do it. I can’t take the subway. I can’t drive. It’s a time for me to reach out to people as well. You can’t maintain total independence. When I saw patients trying to do that, they lost. They put themselves into safety problems. Then they put themselves into ‘damn it all’ and anger and unresolved conflict. But fortunately, almost all of us can call on family. Of course, you have to define family in a looser way … the group of people you call on for support, because it may not be your core family. It may be a really good friend, a fourth cousin, your neighbour next door. I used to see that all the time. It could be hospice volunteers that become part of the family. There’s always family that can help out.”