Le dernier parcours du patient en phase terminale

Palliative care physician, a researcher, and Professor in the Research Centre and Palliative Care Service at the University of Montreal Hospital Centre and in the Faculty of Medicine at the University of Montreal in Quebec.

Clinical Investigator and Associate Clinical Professor in the Research Centre and for the Hematology and Oncology Service at the University of Montreal Hospital Centre and in the Faculty of Medicine at the University of Montreal.

Palliative care physician and Director of the Programme de compétences avancées en soins palliatifs for the Palliative Care Service at the University of Montreal Hospital Centre and in the Faculty of Medicine at the University of Montreal.

Palliative care physician at the Maisonneuve-Rosemont Hospital in Montreal and Assistant Professor at the University of Montreal.

Abstract

Objective

To better understand the role of hope among terminally ill cancer patients.

Design

Setting

A tertiary specialized cancer centre in Canada.

Participants

Cancer patients in palliative care with an estimated remaining life expectancy of 12 months or less (N = 12) and their loved ones (N = 12) and treating physicians (N = 12).

Methods

Each patient underwent up to 3 interviews and identified a loved one who participated in 1 interview. Treating physicians were also interviewed. All interviews were fully transcribed and analyzed by at least 2 investigators. Interviews were collected until saturation occurred.

Main findings

Seven attributes describe the experiences of palliative cancer patients and their caregivers: hope as an irrational phenomenon that is a deeply rooted, affect-based response to adversity; initial hope for miraculous healing; hope as a phenomenon that changes over time, evolving in different ways depending on circumstances; hope for prolonged life when there is no further hope for cure; hope for a good quality of life when the possibility of prolonging life becomes limited; a lack of hope for some when treatments are no longer effective in curbing illness progression; and for others hope as enjoying the present moment and preparing for the end of life.

Conclusion

Approaches aimed at sustaining hope need to reflect that patients’ reactions might fluctuate between despair and a form of acceptance that leads to a certain serenity. Clinicians need to maintain some degree of hope while remaining as realistic as possible. The findings also raise questions about how hope influences patients’ perceptions and acceptance of their treatments.

Résumé

Objectif

Mieux comprendre le rôle de l’espoir chez un patient cancéreux en phase terminale.

Type d’étude

Contexte

Un établissement tertiaire spécialisé en oncologie situé au Canada.

Participants

Des patients cancéreux en phase palliative avec une espérance de vie estimée à moins d’un an (N = 12), leurs proches (N = 12) et leurs médecins traitants (N = 12).

Méthodes

Les patients ont été interviewés jusqu’à 3 reprises; chacun a désigné un proche qui a été interviewé une fois. Toutes les entrevues ont été transcrites intégralement et analysées par au moins 2 chercheurs. On a effectué des entrevues jusqu’à l’atteinte de la saturation.

Principales observations

Des patients en phase terminale et leurs soignants ont décrit leur expérience à l’aide de 7 caractéristiques : l’espoir comme un phénomène irrationnel profondément ancré, correspondant à une réaction affective à l’adversité; l’espoir initial d’une guérison miraculeuse; l’espoir comme un phénomène qui change avec le temps et qui évolue différemment selon les circonstances; l’espoir de vivre plus longtemps même s’il n’y a plus d’espoir de guérison; l’espoir d’une bonne qualité de vie lorsque la possibilité de vivre plus longtemps est de plus en plus limitée; pour certains, une diminution de l’espoir quand les traitements n’arrivent plus à ralentir la progression de la maladie; et pour d’autres, une forme d’espoir qui consiste à apprécier le moment présent et à se préparer à mourir.

Conclusion

Les façons de soutenir l’espoir chez un patient doivent tenir compte du fait que ses réactions peuvent fluctuer entre le désespoir et une forme d’acceptation menant à une certaine sérénité. Le clinicien se doit de maintenir un certain degré d’espoir tout en demeurant le plus réaliste possible. Les présentes observations nous amènent également à nous demander comment l’espoir modifie la façon dont le patient perçoit son traitement et comment il l’accepte.

Supporting patients at the end of their lives is a recurring theme in articles aimed at general practitioners, 1 – 3 as end-of-life care has become a core family physician role. 4 – 6 For professionals working with these patients, preserving and raising their level of hope should be a therapeutic goal. 7 – 9 Accordingly, considerable attention has been paid to the concept of hope in the medical literature in recent decades. 10 – 12 It is considered an important coping mechanism in the care of cancer 13 , 14 and other life-threatening illnesses. A high level of hope is positively associated with well-being and good quality of life, not only for patients but also for their families. 15 – 17 An inverse association has been shown between hope and pain intensity, although this association disappears when controlling for depression or spiritual well-being. 18

Dufault and Martocchio 19 defined hope as a multidimensional concept characterized by a confident but uncertain anticipation of a future that is positive, realistic, and important from a personal standpoint. While this definition subsequently inspired other work, 20 – 22 several authors contend that hope remains misunderstood and poorly defined, 11 , 23 , 24 particularly among patients’ loved ones and health professionals. 25

Given the many noncurative treatments now offered to cancer patients, there is a need to reevaluate what hope represents for people faced with a terminal illness like cancer. The aim of the present study was to better understand the role of hope among people with cancer in the palliative phase and to examine whether hope changes over the course of the illness. To explore this topic, we collected the experiences of hope from different participants (patients, loved ones, and treating physicians) dealing with incurable cancer.

METHODS

Because hope among the terminally ill is a complex phenomenon, in-depth analysis is essential to its understanding. We therefore used a qualitative analysis methodology to develop a detailed conceptualization based on in-depth interviews with people directly involved. 26

Population studied

The study was conducted in Montreal, Que, in one of Canada’s main cancer diagnosis and treatment centres, comparable to most large North American hospitals. After approval by the research ethics committee, the project was shared with the hospital’s oncologists to obtain their collaboration. They were asked to identify patients who could participate in the study, based on the following inclusion criteria: being 18 years of age or older, not cognitively impaired, and in the palliative stage of their cancer, with an estimated remaining life expectancy of no more than 12 months. Exclusion criteria were the inability to express themselves in English or French or being unable to provide free and informed consent.

Data collection

Patients identified by their oncologists were contacted by a member of the research team who gave them detailed information about the study and what their participation would involve, verified their interest in participating (only 1 patient declined to participate at this stage), and scheduled a first interview. The consent form, which included permission to consult the medical chart, was signed at the first interview, usually conducted in the patient’s home. Recruited patients were advised that 3 different interviews could take place at various intervals determined by the course of the illness and treatments. At the end of the first interview, patients provided sociodemographic data and were asked to designate a loved one who would also consent to be interviewed.

Researchers contacted these designated persons and obtained their consent after informing them about the study. Each was interviewed individually without the patient being present so they could freely discuss their own experiences of hope.

All the patients’ treating physicians agreed to be interviewed shortly after the selection. Thus, patient– physician–loved one triads were created that could theoretically generate 5 interviews.

The semistructured interviews began with open-ended questions (interview guide is available from the corresponding author, S.D., on request). These initial questions did not suggest predetermined responses. They focused on the illness experience, the concept of hope, and how hope changed over time. All interviews were fully transcribed, and transcripts were then systematically verified by the interviewer. Interviews were conducted by one researcher (S.D.) or by a research assistant. Sample quotations were translated after the analysis and manuscript preparation were complete.

As data collection and analysis were concurrent, a sampling approach aligned with our theoretical objectives 27 , 28 was used progressively to avoid recruiting participants of the same age, sex, or diagnosis, so as to broaden the spectrum of experiences studied. At the same time, we refined the interview template with more detailed questions to explore the material in greater depth and validate the conceptualization items emerging from the concurrent analysis. Thus, questions were added to the original interview template as new attributes emerged during the analysis.

Following the analysis, the resulting theoretical model was presented to the loved ones and physicians in 2 different discussion groups for validation.

Data analysis

Analysis was conducted in 3 phases, following the recommendations of Charmaz. 26 The first phase involved open coding of each unit of text in the transcripts, staying as close as possible to the words used by participants. A more focused coding was performed in a second phase, in which more abstract categories were defined. Last, a theoretical analysis identified links among the categories, presented in a conceptual diagram describing the experience of hope in people (patients, loved ones, and physicians) affected by incurable cancer. All analyses were performed by at least 2 researchers who worked independently and then compared their results. Divergences were discussed until consensus was reached; such divergences involved less than 5% of all the data.

The scientific merit of the analysis was established based on criteria suggested by Marcus and Liehr. 29 The credibility of findings was ensured by confirming the analyses with patients in the second and third interviews, and with their loved ones and physicians in group discussions held to present the theoretical model. The quality of the analysis was validated by cross-analyses conducted by at least 2 researchers and by regular validation meetings attended by the entire research team.

We continued the interviews until we reached saturation, when the last interviews yielded no new categories or new relationships among the themes in the theoretical model.

The interview transcripts were analyzed using QSR NVivo 7. 30

FINDINGS

Sample

The sample consisted of 36 participants whose characteristics are presented in Tables 1 and ​ and2. 2 . Sample quotations from participants illustrating the various attributes of hope appear in Table 3 .

Table 1.

Characteristics of patient participants and their loved ones

Table 2.

Characteristics of physician participants

Table 3.

Quotations illustrating the themes that emerged during interviews

“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)

“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)

“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)

“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)

“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.”

LO—loved one, MD—physician, PT—patient, Q—question, R—response.

Hope pathway in people living with incurable cancer.

By conceptualizing the data, we were able to discern the hope pathway in terminally ill cancer patients in the palliative phase. This pathway is not rectilinear and it includes several states, to which we assigned certain attributes. Rather than present the results of the interviews separately by group (patients, loved ones, and physicians), we present them together, as all 3 groups raised the same themes, and as it is more relevant to highlight how the different groups’ statements mirrored one another.

Attribute 1. Hope as an irrational phenomenon: For the respondents, hope was akin to a human reflex, a coping mechanism shared by all humans contending with life-threatening illness. One metaphor, that of radar guiding a ship on a stormy sea, was particularly striking. Hope is a deeply rooted, affect-based disposition that eschews rational, linear logic. It is created through a combination of people denying part of what they have been told and maintaining self-preserving illusions, and a communication approach that one physician described as “white lies.”

Attribute 2. Hope for a miracle: Hope is also a phenomenon by which the person projects himself or herself into the future. Even though all the patients in our study had been advised of the palliative status of their illness, most envisioned a future for themselves in which they were cured, even if that projected status required a miracle. Patients might assume a cure is impossible and give up expecting one, while at the same time entertaining the small, irrational possibility of a miracle. Loved ones shared this hope for a miraculous cure, whereas physicians found it difficult to deal with patients whose decisions about treatment were not based on plausible scenarios.

Attribute 3. Hope as a phenomenon that changes over time: With progression of the patient’s illness—as revealed, for example, by test results—the hope for a cure, being a dynamic phenomenon, was modified. The objectives of patients and their loved ones changed over time, expressing another type of adjustment that was more focused on reality.

Attribute 4. Hope for prolonged life: As they moved toward a more rational understanding of their illness, fostered by the progression of symptoms showing they were not moving toward a cure, patients adjusted and redirected their hope toward new goals. They understood a cure was unrealistic and instead envisioned a future in which their life expectancy might be prolonged. In some cases the hoped-for prolongation remained unrealistic, such as living another 20 years, which would essentially correspond to a cure. One patient even associated this desire for longer life with the desire for immortality, which he transformed into a more acceptable form of longer life. For several respondents, this perception represented a sort of bargaining in which the patient “buys time” by undergoing treatments.

Attribute 5. Hope for good quality of life: Over time, as patients absorbed the reality that the possibility of prolonging their lives was probably limited, they focused their hope instead on quality of life. The desire to live longer might simply be part of the survival instinct that characterizes all biologic species. However, the patients and their loved ones did not want longer lives if quality of life would be impaired, which meant different things to different individuals. For some, a good-quality life was simply a comfortable life, whereas for others, it meant being able to have experiences that were not always possible given the limitations imposed by their illness. For several, it meant “normal life”—that is, life as it was before their illness.

Attribute 6. Lack of hope: For one group of patients, the end of hope for effective medical intervention gave way to hopelessness, accompanied by sadness and nonacceptance of the advancing illness. In some cases, it was actually despair related to a letting go, expressed as withdrawal in the face of illness and from life itself. With no hope of cure, these patients sank into a state of distress prompted by their direct confrontation of death. However, many physicians interviewed saw this recognition of reality as a necessary phase, as hope cannot be limitless.

Attribute 7. Hope as enjoying the present and preparing for the end: When all hope for successful treatment had evaporated, some patients did not accept the inevitable; they succumbed to hopelessness or despair and were devastated. Others, however, focused their residual hope on preparing for the end of their life and enjoying the present. As their illness advanced, they abandoned magical thinking. For some, their illness led to positive self-transformation accompanied by acceptance of what was to come. They achieved a measure of reconciliation with their personal experience and their incurable illness, and the remainder of their lives became an opportunity for further living. Some even spoke of “healing” when talking about this acceptance and the resulting inner peace.

Conceptualization of hope.

We first conceptualized hope using a linear model ( Figure 1 ). In this initial model, patients passed through states that were each assimilated into successive stages of hope, which was a progressive adjustment to reality, up to the point where a second shock occurred, such as recurrence of the illness, its advance, or treatment failure. This second shock placed patients at a sort of crossroads, from which they could proceed either toward despair and sadness with no possible solution or toward acceptance and a form of serenity.