Ultimate journey of the terminally ill

“We’re crossing, and the sea is stormy. But we have to hope it will calm down afterward. There are strong winds, and the sea is stormy, there’s fog .… But we have radar, and that radar is hope.” (LO)

“When I hear the word hope, the first thing that comes to mind is ‘coping mechanism.’ It’s the body, the organism, the psyche defending itself.” (MD)

“The problem with hope, as I see it, is the illusion that’s attached to the hope.” (PT)

“As much as possible, I try to tell it like it is, but not to cut off hope. I don’t know if this is lying, but I like to say, ‘Listen, we have several treatment options. If there’s a recurrence, we’ll give it another go’ .… Sometimes, we might say these are little white lies.” (MD)

“Cure … sure, that would be a hopeful word, but I know there isn’t any … unless a miracle happens.” (PT)

“At any given time, it’s a little bit like there are miracle workers here. I know we’d like to see a miracle.” (LO)

“I’d say maybe what oncologists find hard is when we have the impression that patients’ hopes are totally unrealistic …. The patient you’re treating with palliative chemotherapy who says, ‘I’m going to take this and be cured, Doctor,’ that’s always going to make me a little uncomfortable, because you say to yourself, ‘I know I won’t cure him.’” (MD)

“Hope changes over time, yes. [Patients] will go through a second and then a third round of treatment …. They’ll keep going right to the end, but I think their hope fades over time. The objectives also become different.” (MD)

“It’s the patients, but also their families. Over the course of the patient’s illness, especially when it goes on for years, I think families become exhausted. They don’t have the same hopes after they’ve been battling this for a year or 2 and when their lives revolve entirely around this.” (MD)

R. “If I can’t be completely cured, I tell myself that I just want to live a long time.”

Q. “And for you, living a long time, that would be how long?”

R. “Well, I’d like to see my grandchildren graduate.”

Q. “How old are they?”

R. “They’re 4 years old and 1½ years old.”

Q. “Well, that’s 20 years! Is that what you’re hoping for?”

R. “For me, that’s it. Yes.” (PT)

“In fact, when I say I’m hoping to live as long as possible, what I’m not quite saying is that, really, I’d like to live forever. But since I know that’s impossible, instead I’m going to say that I’m hoping to live as long as possible.” (PT)

“What I’ve realized is that I’m in palliative care, but at the same time, basically, I’ve always been in palliative care. They were treatments—I knew this—that couldn’t cure me, but they were treatments that bought me time.” (PT)

“My hope is to prolong my life expectancy and to do that in conditions that are as normal as possible.” (PT)

“There’s the whole philosophy of quality of life. Of the life she has left. In other words, she wouldn’t want to spend what’s left of her life in pain. She would want to have a life that’s at least bearable.” (LO)

“But, it isn’t just longevity, clearly it’s quality of life, it’s having some control over your life, that there are things you want to experience …. Sometimes patients are terribly limited by their illness and despite that, they’re determined. I don’t think it’s irrational: they want to live. And any reason at all is a good reason.” (MD)

Q. “Do you still have hope today?”

R. “No.”

Q. “Would you say that you’re in despair?”

R. “Despair [pause]. If that means I haven’t yet accepted the fact that my leaving is unavoidable, then maybe, yes.”

Q. “Does that affect your morale?”

R. “I think so. Ever since I took this decision [not to do anything else], I have the impression that I’m letting myself go. I had hope until now. But now, I think I’ve let go.”

Q. “Are you giving up? Are you giving up on yourself?”

R. “Possibly yes. Yes.”

Q. “And doing that, it’s not bringing you any peace?”

R. “No, it’s not bringing me any peace. Not at all.”

Q. “Now, you’re very, very sad. Is that because you have no hope, or because you think hope is crazy?”

R. “[Sighs, with emotion] It’s hard to say. It’s a little bit of both. Yes. What’s triggering this is that there isn’t really any hope that they’ll find … that I’ll have time to find something that will keep me from … dying. [Bursts into tears] Well, I think my suffering is mostly because of that.” (PT)

“At that point, I’d say they lose hope, but I don’t see that as a negative thing. Losing hope also means facing facts. I always tell patients, ‘Everyone wants to be immortal, but we know there’s no such thing as immortality. The difference between you and me is that you know what’s ahead for you.’” (MD)

“At a given point, hope can only go so far. Then we have to deal with reality, which catches up with us pretty quickly.” (MD)

“Whereas, when we stop all treatments, the patient has no more hope than to live from day to day.” (MD)

“Their life will change; the notion of hope won’t be the same as it was at first. They will have gone through a process. Hope will no longer be based on magic, but on a personal construct.” (MD)

“It means I’ve become less demanding of myself and of others; that I’ve become more calm; that I accept things more easily.” (PT)

Q. “What is healing, for you?”

R. “Healing, without being physical, it can be a little more psychological, mental. Learning to live with illness, that can be like a kind of healing, maybe. What I mean is that, it’s more being at peace with yourself or calm inside.” (PT)

“People say it’s when we’re sick that we realize how great it is to be healthy … the sky, trees, beautiful things that we sometimes don’t notice enough, these things become more important. The little things that happen, too, become much more significant.” (LO)

R. “I prepared my will …. That took a lot of pressure off me; I was relieved. As though there had been … that’s it, that’s where I accepted things.”

Q. “What was accepted? What did you accept?”

R. “I accepted the fact that I was going to die [becomes emotional]. I don’t have a choice.”