T A K E
C A R E
C A R E
Sanne Brands
10245782
Medical Anthropology and Sociology
University of Amsterdam
René Gerrets [supervisor]
Anja Hiddinga [second reader]
08-08-2016
clinical futile care; exploring the role of risk, hope and relationships in
the decision-making process of terminally ill patients
‘Well… It is haematological cancer, but it is mild’ ‘O, thank god, so I will not die from this’ ‘Yes, you will die from this’ ‘Okay, but it has a chance of good recovery?’ ‘No, it is incurable’ ‘Eh.. okay.. so it is incurable and it will kill me..’ ‘..Yes..’ ‘.. as long as it is mild..!’ Yes, it was mild. Fortunately, I was shocked already..’ Fragment of Herman Finkers
A c k n o w l e d g e m e n t s
This thesis would not have been possible without the support of my friends and family. I am thankful for my best friend and neighbour Natalja who supported me after the difficult and emotional days in the hospital with a good conversation, glasses of wine and hugs from her daughter Amina. I would like to thank my sister in law, Wytske for helping me gain access to this large academic hospital and her husband, Alistair, for his academic support. Thank you René Gerrets for being my supervisor and your constructive criticism. I would like to especially thank my parents Jon and Jeroen for all their support, love and confidence in me. Gratitude goes out to my husband Kalle who always believes in me and supports me, checks on my work and discusses his valuable insights with me. My special gratitude goes out to the patients and their loved ones that shared their most intimate moments with me. Thank you for opening up your minds and hearts but most importantly thanks for sharing your laughter in times of despair. Meeting you and hearing your stories has changed my view on treatment decisions and are except for my personal experience also highly valuable in my professional
A b s t r a c t
This thesis is concerned with the factors that influence the decision-making process of pancreatic cancer patients in a Dutch hospital in order to understand the issue of clinical futile care. Clinical futile care means that patient receive treatment without health benefit. Drawing on the theoretical perspectives of risk, hope and practice theory this research suggests that futile care is better studied as a practice. The data utilized was conducted during eight weeks of fieldwork in a large academic hospital in the Netherlands. Four interviews were conducted and complemented by extensive participant observation, which forms the basis of the analysis. Patients find themselves in a vulnerable position while hoping for treatment possibilities and rely in their decision making on probabilistic accounts of risks and a reflexive body suffering from an ‘invisible illness’. Studying clinical futility as a practice will highlight the relational aspect of the illness that is strengthened and shaped by the use of
C o n t e n t
Introduction
6
2. Context
10
2.1 Pancreatic cancer in the Netherlands
10
2.2 The pancreas-day
13
3. Theory
15
3.1 Defining practice in the hospital context
16
3.2 Experiencing risk in the case of a terminal illness
18
3.3 Hoping for the best
19
4. Research Design
21
4.1 Research questions and aim
21
4.2 Methodology
23
4.3 Data analysis
24
4.4 Ethical considerations
24
4.5 Reflection
26
5. Risk and Hope
29
5.1 May the odds be ever in your favour
29
5.2 Practicing hope
34
5.3 Deaths it?
38
5.4 Reflexivity
41
5.5 Conclusion: confusion
41
6. Relationships
45
6.1 Relationship doctor – patient
45
6.2 Relationship family – doctor – patient
51
6.3 Conclusion
55
7. With a sense of tumour
56
7.1 Humour and cancer
57
7.2 Laughing families
62
7.3 Coping with laughter by professionals
64
7.4 Conclusion
65
8. Conclusion
67
Bibliography
Annex: Interview guide
I n t r o d u c t i o n
Health care costs are rising in the Netherlands. Several changes in the last decade have caused this, such as an aging population, the rise of chronic illnesses, and the improvement of (expensive) pharmaceuticals (Ministry of Health, 2012). Accordingly, a solution needs to be found because the health care system is currently untenable and has to be transformed in order to make it less costly, more effective and to improve the overall quality (CPB, 2011). Based on several reports of the Dutch Ministry of Health and the national Health Care Institute and my own observations, a solution might be found in addressing the issue of clinically futile care. Often, while working as an anaesthetic nurse at the operation room unit, I encountered patients who received care that was not clinically beneficial for them, so called ‘futile care’. This could be expensive end-of-life treatment, admission to IC units or extensive surgery without a good outcome. In such scenarios, I always wonder: ‘why do patients choose a certain treatment when it is not helpful for them?’ and probably more interesting: ‘how can we change this process by understanding what factors influence their choices regarding treatments?’ These questions served as the inspiration for this thesis.Clinically futility means that the treatment is not contributing to the medical problem of the patient and that the resources in this process do not proportionate the purpose (for instance, less health benefits and more pain) (Leenen, 2000). Ideally, the process of determining what is ‘clinically futile’ has to involve the doctor and the patient. In communicating treatment possibilities, the doctor can offer quantitative and qualitative knowledge, such as the success rate of the operation or whether the therapy is worth the costs (Pawlik, 2005, Ligtenberg 2013). But also questions of practical nature: what can be done or what is possible in this particular case? The patient will have to evaluate aspects of risk; for example whether the
too and what are the patient’s goals for the future? What does the patient expect from the doctor regarding treatment?
The issue of clinical futility is emerging because there are some societal changes when it comes to terminal illnesses. Contemporary society seems to have more trouble dealing with experiences of risk and death, therefore people are primarily motived by keeping themselves safe by utilizing health care (Beck, 1992, p. 49). Quitting therapy is not preferred and people talk about ‘fighting’ when speaking about cancer (KNMG, 2015). People find it generally easier to ‘do’ instead of ‘letting go’ in the case of an illness (KNMG, 2015, p. 39). Furthermore, people usually find it difficult to talk about death, doctors being no exception to this; they prefer to talk about treatment (KNMG, 2015). Hak (2000) describes this tension in the article about ‘false optimism’. Hak explains that ‘false optimism’ is a combination between the reluctance of doctors to offer a full explanation about the prognosis and the indifference of patient to hear about it. Moreover, Hak emphasizes the complicated meaning of the word ‘treatment’ which gives the illusion of full recovery, while it can also mean palliative treatment, which is life-prolonging instead of life-saving (2000, 1379).
Another reason for the growing issue of clinical futility is that patients sometimes have unrealistic expectations about health care and can be demanding in their requests: seventy per cent of the health care professionals act differently because they feel pressured by the patient or third parties like health care insurance companies or family members (VvvA, 2016). During my investigation, I experienced multiple cases like this, which is distressing for both the patient as the doctor because the doctor cannot meet the expectations of the patient and patients might feel dissatisfied because they can have the impression that not every stop is being pulled. Moreover, it makes the patient vulnerable, because the patient hopes for a better future but these hopes are not always met (Simpson, 2004).
Thus, clinically futile care is related to manufacturability of the future as it makes patients believe they can control the future by continuing treatments and can demand therapy by feeling this way. This relates to a growing sense of reflexivity, where persons are hold accountable when things go wrong in life and therefore might push the limits when exploring different forms of treatment (Beck, 1992).
Furthermore, clinical futility is related to risk for both for patients and doctors. The patient is at risk because futile treatment can harm the patient instead of helping him, the doctor is at risk because withholding treatment might result in a culpable act and the doctor wants to avoid this (Ten Haaft, 2013). And above all; clinical futile care is expensive. Clinical futile care in the Netherlands has received little attention yet in the social sciences. It is still unclear what happens in the consultation room often referred to as the ‘black box’ (ten Haaft, 2013) and it is unclear what actually influences the decision-making process. Previous research on clinically futile care has been conducted in other parts of the world, for instance in Britain and America. Whenever research was conducted in the Netherlands, clinical futile care is perceived as a singular process, happening outside the realm of the people concerned, for instance in the report of the KNMG (2015) where clinical futility is perceived as an isolated phenomenon. Here, the doctor is perceived as a health care provider that acts and offers treatment with full understanding of the illness, as a rational thinking individual. In contrast is the patient, an individual acting agent who makes choices that are influenced by societal expectations and individual considerations. Patients might base their decisions on a combination between rational elements (such as probability, risk calculation) and non-rational elements (such as trust, relationships, love and beliefs), the so-called in-between strategies because there is not enough time in daily life for ‘fully rational decision-making’ (Zinn, 2008, p.446). A certain dichotomy is presumed with regard to decision-making, where the health care practice of physicians and that of patients are separate and only interact with each other the moment they meet. In reality, things appear to be different and more complex. Therefore, I would like to suggest studying the issue of clinical futility as a practice that emerges from risk and hope and is influenced by relationships. Therefore, I have formulated the following research question:
I included pancreatic cancer patients for this research because there is still no reliable cure for pancreatic cancer. This means that these patients have to make difficult care decisions that are most of the time not curative (life-saving) but palliative (life-prolonging). Responses from patients about unnecessary care or health care costs appeared to be difficult when they are faced with serious illness and death. Nevertheless, it is important to understand the different elements that influence decision-making in end-of-life care and the practice of clinical futility by investigating what actually happens in the consultation room. Therefore, I have taken one of the knowledge gaps into account, described by ZonMw (2013) who emphases a need for more qualitative research in the consultation room to understand the decision-making process regarding end-of-life care.
2 . C o n t e x t
This chapter presents some important background information that is relevant in order to better understand this research. It will explain the nature of the disease, its prevalence and the structure of the pancreatic department in a large academic hospital. Furthermore, an ethnographic vignette will serve to illustrate the so-called ‘pancreas-day’: every Thursday, all the patients that are suspected to suffer from pancreatic cancer arrive at Hospital B and have their medical examinations, conversations with the specialist and ultimately, the final results on one day. The general idea is that all the patients walk out of the hospital with a treatment plan at the end of the day.
2.1 Pancreatic cancer in the Netherlands
The pancreas is an organ that is positioned in the middle of the abdominal cavity (see: front page). It takes care of the production of hormones and enzymes that play a role in the breakdown of food in the intestines. Around 2000 people a year receive the diagnoses pancreatic cancer in the Netherlands; there is no difference between men and women. Most of the patients are between the 65 and 85 years old.1 Pancreatic cancer is a serious form of cancer; most people die from it and most of them within a year. There is not yet a proper treatment for this cancer but the standard therapy is chemotherapy and radiotherapy. Surgery is an option for ten to fifteen per cent of the patients. The survival rates depend on the stage of the cancer and most of the early stage diagnoses are accidental findings. The majority of the patients experience hardly any symptoms and for this category of patients (in the case they can be operated) ten per cent of the patients are alive after five years.
Surgery offers the best chance of surviving (ten to five teen per cent after five years) but the operation itself is extensive and has a high risk of complications.
Additionally, in certain cases patient experience what is called in the hospital an ‘open-closed’ operation. This is when the surgeons discover new metastases during the operation and ‘close’ the patient without removal of the tumour. This has happened for instance to Mrs. Dolven, who at first wanted to participate in my research but later waived because of this bad news. This is particularly sad because the patients are beginning this process with the idea that they might still have a chance to survive.
The purpose of the surgery is to remove the tumour. This is only possible when patients are willing to be operated, are in a good condition (based on the WHO condition scale) and when there are no further metastases and there is no vascular involvement. Vascular involvement means that patients are investigated with regard to whether the tumour is ‘involved’ in the big blood vessels that are situated in the same area. In most of the pancreatic cancer cases, the vessels are affected so they will not perform surgery. During the operation a large part of the pancreas, the gallbladder, the biliary tract, the duodenum and a large part of the stomach will be removed; this type of surgery is called a Whipple-procedure. Half of the patients will suffer from complications because of the operation and two per cent will die during or just after the operation.2
Hospital B is one of the nineteen expertise centres in the Netherlands concerning the treatment of pancreatic cancer. Department O is a highly specialised unit in the hospital completely devoted to treating cancer within the pancreatic area. They are treating 565 patients a year in the category of Hepato Panreato Biliaire carcinomas (HPB) and of all these patients only 60 will have a Whipple surgery.3
2 Information derived from the folders of Hospital B and pre-surgery conversations between the patient and the surgeon. 3 Information derived from ‘Department O.-boekje, stand van zaken’ retrieved at: 20th of June 2016
2.2 The ‘pancreas-day’
When walking from the metro station to the hospital, I follow the same route as most patients who arrive by public transport. Some patients arrive by car and some arrive by train or metro. I have heard quite a lot of times that patients are worried they will arrive too late because of the traffic jams and therefore arrive way too early or take public transport to be sure. From the metro station to the hospital, there is a covered walkway. It looks a little dark and rusty. Shown from the architecture it was built in the eighties; in front of Hospital B, you can choose from two different entrances; one is the main entrance for the general hospital, the other is for the outpatient clinics. The patients of the specialist pancreas cancer department have to access the outpatient clinic. Department O is located on the second floor where there is a reception for patients to inform the receptionist and sign up. This receptionist will tell them to wait in waiting room number three of number four. There, in both waiting rooms are the volunteers Piet and Willem. These two retirees welcome the patients and keep track of them; they inform the doctors about the patient’s arrivals. When necessary, they will show the patients around in the hospital. This is really convenient because Hospital B is really impressive and big, so it is nice to have some personal attention. They show patients the patient lounge (an attempt of the hospital to create an area that is less clinical and more cosy), accompany them to the blood collection department or the department where the CT scans will take place. They offer the patients and their families something to drink and inform them about the ‘pancreas-day’. The mugs for the coffee and tea are decorated with dots and have bright colours. It feels a little homey in a clinical environment.The pancreas-day starts around nine in the morning with an introduction meeting with the internist, surgeon or specialized nurse. At this meeting, the patient will meet one of the team members of the pancreas-department and will have an (in)formal conversation about the patient’s expectations of this pancreas-day and all the data is checked on accuracy like previous illnesses, pharmaceutical use, metabolic
but most of the questions will be unanswered because there is no disclosure4 yet, this will come in the afternoon. In some rare cases, more data is needed in the form of a CT scan or a blood sample; this can be done after this first meeting. When the patient and family have spoken to a specialist, they are introduced to the nurses of the pancreas department and have a brief conversation with them. These introductory conversations have to be finished before twelve, because at twelve o’clock the big multi-disciplinary meeting (MDO) starts. When the medical staff is hurrying to the radiology department where the MDO takes place, the patients have to amuse themselves in the hospital. Most patients are from other parts of the country so they will have to wait in the hospital. This waiting was often referred to as long, demanding and intense because they could hear their death sentence in a couple of hours. Moreover, there is not a lot of distraction in the area around Hospital B, although I have heard that some patients were visiting the Arena (the soccer stadium) while waiting.
The MDO is in a dark, small room at the radiology department that is also at the second floor. It looks like a small movie theatre with approximately twenty seats and two big screens. At this meeting, an expert team is present that consists of oncologists, radiologists, gastroenterologists, surgeons, pathologists and (specialized) nurses. Medical students and researchers are also present. This special expert team specifically treats patients that are suffering from cancer in the gastro-intestinal area. The oncologist has the lead in this conversation about the patient and she introduces the patients to the team. During this meeting they jointly discuss all the data and make a plan for the patient. Dependent on the vascular involvement of the tumour and the patient condition, this can be surgery, experimental treatment or (adjuvant) chemotherapy. In extreme rare cases, they decide to do nothing (it happened once during my fieldwork, because the patient was in her eighties, thus too old for chemotherapy and surgery). During this meeting, the specialist that treats this particular patient introduces the patient to the expert team. This explanation is based on former knowledge of the specialist and the introductory meeting that happened in the morning. Together they look at the scans and the former medical
examinations at the two big screens. In some cases, a patient can be included in a study (Hospital B is nationwide known for their research in pancreatic cancer so a lot of patients arrive from all over the country to ask for a second opinion and wish to participate in these studies).
After this meeting, the whole team will return to their departments and the specialists of Department O will inform the patients about the results of the MDO meeting in the afternoon. This afternoon meeting takes place at the same department as the morning meetings. For most patients and their families this is really emotional and frightening because in this afternoon meeting they will hear the prognosis of their illness and the details of the plan made by the experts. In this afternoon meeting, all specialists have their own approach to inform patients about the situation. Some of them will directly bring the ‘good’ or the ‘bad’ news. Some specialists do some explanation first and provide the ‘real’ information later. Patients immediately have to decide what to do, if they want an operation and if they want to get involved in studies. There is not a lot of time to consider the situation and make a deliberate decision. In some cases, the patient also has to see the oncologist, which happens after the afternoon meetings. When the specialist has explained the next steps of the treatment, the patient will have the next conversation with the nurse. The nurse will provide the patients with folders and general information about the treatment. The nurse also functions as psychological and emotional support for the patients and their families; here they can ask all their questions and talk with the nurse about their worries and uncertainties.
3 . T h e o r y
Every time a crisis occurs, for instance terrorist attacks, massive floods or deadly epidemics, scientists work to analyse the cause of the problem to understand how it can be avoided in the future. The first frequently asked question is: ‘how could this happen?’ And the second question will quickly follow: ‘how can we avoid this?’ These questions also apply for one of the greatest undeniable risks associated with being human, the risk of dying when faced with a terminal illness. Eliminating risks and ensuring safety in this process are important both for medical professionals as for patients. Safety in health care practices can be conceived of as a practice that involves “people, technologies and textual and symbolic forms assembled within a system of social relations” (Nicolini, 2002, p. 1992). Finding safety by eliminating risks in health care practices is complicated and difficult. It gives an illusion of manufacturability of life but also the responsibility to use newly acquired scientific knowledge and methods (The, 2004, p.318). Beck explains in the introduction chapter of Franklins’ The politics of risk society (1998) that expanding our knowledge will make the world more complex and unknowable (1998, p.13). Together with the rise of life-sustaining techniques and technology-driven health care, physicians generally find it easier to withhold treatments that never started then withdraw from on-going treatment (Pawlik and Curley, 2005, p. 278). This is in the same line of thought as stated by doctors-organization KNMG, which report some of the factors that produce futile care, which is (apart from many other reasons) a combination between the cure-focused doctors and the treatment-focused patients (KNMG, 2005, p.6).
This chapter begins with a description of practice theory and the use of this theoretical choice for studying clinical futility. Studying the hospital context can be complex and practice theory can be an illuminating framework with which to study this site. Understanding the complexity of clinical futility, one has to gain insight in the decision-making processes of both doctors and patients and the different elements that influence this process, such as relationships, risk and hope. This
chapter will discuss the relevant concepts and theories that describe these themes. Subsequently, perceptions of reflexivity will be reviewed connected to notions of hope and risk conceptualised by Beck. The last section of this chapter will elaborate on aspects of hope in the case of a terminal disease.
3.1 Defining practice theory in the hospital context
Practice is a routinized set of actions of human behaviour, ways of ‘doing’ or performing an act; it is social and represents a pattern (Reckwitz, 2002, p.250). Practice is the epistemological starting point of this thesis because the process of decision-making is well grounded in practice theory. Especially, decision-making in the health care setting is dependent on different actors performing an act and shaped by normative processes influenced by the social environment.
Practice is known as an embodied human activity and is organized by a shared and mutual understanding of the social environment (Schatzki, 2001, p.11). The nature of practice in health care differs between health care professionals and patients: health care professionals offer treatment and make decisions about care, while patients are the recipients of care. Specialists learn to practice care in the concrete sense. They act because their educational programs are aimed at diagnosis and prognosis of illnesses (KNMG, 2015). In this performed role, norms are embedded in the practical act of being a doctor: the taken-for-granted practices. These practices are either individual or “trans-personal, imbedded in the routines organizations use to process people and things” (Schatzki, 2001, p. 84). This is the process that separates the doctor from the patient, where the doctor offers treatment and the patient expects treatment. This taken-for-granted behaviour might influence the patient in their expectations about treatment. Patients might have different expectations on treatment compared to doctors: “[o]verly optimistic intervention expectations by patients and the public are undoubtedly contributing to the growing problem of over diagnosis and overtreatment” (Hoffman et al., 2015, p. E10).
For this thesis I want to focus on the medical practice of patients and doctors. So, when can one speak of practicing care, or even more specifically, practicing good care? The word ‘care’ implies a process, to achieve something that is not already there (Heuts and Mol, 2013, p.130). It also suggests valuing, to improve the current situation and aim for something better. In health care, both doctors and patients have to value care and find a mutual understanding about what is perceived as good care. Because these valuations might differ between health care professionals and patients they have to find common ground: “In care practices, after all, it is taken as inevitable that different ‘goods’, reflecting not only different values but also involving different ways of ordering reality, have to be dealt with together” (Mol et. al, 2010, p. 13).
In practicing health care, both the specialist and the patient are restricted by social norms, legal norms and behaviour, and therefore the ‘goods’ of these two groups differ. The specialist is guided by restrictions of the institution they work for, but are also guided by the professional expectations patients have of their specialist. The patient expects to get treatment, because the patient asks the medical professional for help. These expectations in taken-for-granted behaviour guide the patient in the practice of health care. Thus, the medical professional and the patients both have different perspectives of what is comprehended as ‘good health care’ but through negotiation they can achieve the practice of this.
This negotiation results from the communication of wishes, beliefs, expectations and hopes. The paternalistic model that used to dominate the interaction between doctor and patient is shifting due societal changes and a different philosophy of care. Studies have shown that involving the patient in health care practice have multiple benefits, such as for the patients well-being and life satisfaction (Ong et al., 2000, Bredart et al., 2005), a better recovery and capacity to tolerate pain, decrease in hospital stay length and satisfied patients, which are satisfying for the doctor and his or her contentment in work (Ha, 2010, p. 39). Physicians have three main goals to accomplish during the consultation conversations: “establish a good interpersonal relationship, facilitate information exchange, and facilitate patient involvement in decision-making” (Arora, 2003, p. 792). Hence, communication between doctor and patient is crucial in understanding
the practice of good health care and the practice of clinical futility. Although medical professionals acknowledge the importance of good communication, they also can overestimate their own capacity in communicating, which is particularly relevant for the issue of futile care because without a good negotiation there will not be a mutual understanding between the physician and patient (ibid, p.793).
Thus, drawing on practice theory, health care can only be a good practice when there is “persistent tinkering in a world full of complex ambivalence and shifting tensions” (Mol et al., 2010, p. 14). In the health care setting, the mutual understanding of a practice is influenced by communicational capacity, norms, different knowledge, the social context, expectations, institutional agreements and educational background of the specialist. The notion of practice is essential to understand the issue of clinical futility as it illuminates the roles that are prescribed in the current health care system and the consequences of this distinction: decisions based on expectations, that are in their turn based on hopes (see chapter five: risk and hope).
3.2 Experiencing risk in the case of a terminal illness
As I have tried to show in the previous paragraph, the practice of clinical futility and that of good health care are linked to each other; one of those links is the perception of risk and the behaviour that is associated with this concept. Beck (1992) stated in his book ‘Risk society; consequences of new modernity’: We live in a risk society, a society so concerned with ensuring safety that it gives no space for uncertainties (Beck, 1992, p.49). With the increasing importance of technology and knowledge, the world becomes more complex and individuals are to be left in ignorance (Franklin, 1998, p.13). For example, “The less we rely on traditional securities, the more risks we have to negotiate. The more risks, the more decisions and choices we have to make” (Franklin, 1998, p. 10). Patients who are diagnosed with pancreatic cancer have to make decisions to maintain a grip on the safety of staying alive. Seenbelief in having more agency to impact and plan the future. According to Beck, the reflexive individual can supposedly control their own destiny by making the right choices. It gives the illusion of a manufactured future: patients believe they have to keep fighting and consent to therapies and surgeries offered by the medical professionals. So patients who tend to forgo treatment are influenced by a growing reflexivity, doctors on the other hand want to avoid risk and culpable actions and find it difficult to acknowledge the limits of medicine (ten Haaft, 2013, p.29). Concepts of reflexivity have contributed to the idea of a responsible, deliberate and calculable life. Together with the growing capacity for prolonging life by medical intervention, the responsibility and obligation to ‘fight’ grows (Elliot, 2002, p. 298). Numerous options are available for individuals produce these responsibilities, for instance new experimental chemotherapy or promising pharmaceuticals. In the process of trying to fix the situation, patients might cling to every available treatment in order to minimize the risk and with a primary motive of safety (Beck, 1992, p.49).
These consequences of growing perceptions of risk are used to understand the decision-making process of pancreatic cancer patients. Specifically because in the case of pancreatic cancer patients, their illness is more or less invisible: in the beginning of the illness trajectory patients do not have any symptoms, which makes it even more complex. Risk perception and reflexivity change in the light of a deadly disease, influenced by the feeling of hope.
3.3 Hoping for the best
When hope is conceptualised as an ‘emotional attitude’ (Simpson, 2004), we can see that it challenges the understanding of risk and fuels the treatment seeking behaviour. Whereas trust is focused on people, hope is generally focused on objects or a possible outcome. Hope is rooted in the future, it is uncertain, it does not involve organized features but rather focuses on possibilities and chances when it lacks systematic calculations (Brown, 2016).
Perspectives on hope by health care professionals can be divided into three separate perspectives: realistic, functional and narrative (Olsman et al., 2013, p. 3). These perspectives can be used intertwined, as they are not necessarily separate from each other. In the realistic perspective, health care professionals believe that honesty is an important feature of framing hope. It is a balancing act between providing truthful information and correcting the hopeful view of the patients. Secondly, the functional perspective has been described as a way of coping with the illness. Hope is seen as something good that can help the patients in desperate situations because it makes the future more manageable in times of vulnerability (Zinn, 2008). The last perspective described by Olsman et al. (2013) is the narrative perspective. Here, hope is seen as something meaningful, almost spiritual way of interpreting hope. It must be linked to a patient’s personal narrative, providing insight into what a person finds important in their life.
In the analysis section, I will conceptualise patients’ perspectives of hope in the way distinguished by Simpson (2004): as something desired, connected to goals, a form of imagination and as an act to meet goals (ibid.). Simpson gives a broader understanding of the concept, beyond the typical discussion about hope that focuses on ‘false hope’ and ‘sustaining hope in case of a bad prognosis’. According to Simpson, hope makes us vulnerable because we share our imagination with the people who might realize the things we hope for (2004, p. 443). For example, a health care professional with whom a patient shares the hopes of a good recovery in the case of a terminally ill disease. When the hopes are not realized, or loved ones do not share the hope that is felt, this can make a person vulnerable. Although patients generally want health care professionals to be honest with them when discussing the prognosis of the illness, what this honesty really constitutes differs between patients (Clayton, 2008 p. 655).
4 . R e s e a r c h D e s i g n
Following the conceptual ideas in the theoretical framework, this chapter reviews the methods that were used to answer the research questions. Furthermore, it will elaborate on the methodology and the analysis of the data. In the last section of this chapter, I will reflect on the ethical implications of this research.
4.1 Research questions and aim
As outlined in the introduction, the following research question was formulated:How do hope, risk and relationship influence the practice of clinical futility with regard to pancreatic cancer patients at a Dutch hospital? The related sub questions are: • What is a practice of clinical futility? • How are relationships important to understand the issue of clinical futility? • How are concepts of hope and risk relevant in understanding the
decision-making process of pancreatic cancer patients?
• How does the notion of risk emerge in clinical futility? • How is humour used in cancer care?
The aim of this research is to gain understanding of the decision-making process of pancreatic cancer patients and what strategies these patients utilize to cope with their illness. It will provide a detailed account of the illness process of pancreatic cancer patients and the choices they have to face. It will also hopefully provide a broader view on how difficult it is to challenge the issue ‘futile care’ in cancer care.
4.2 Methodology
Access
It took some time and effort to gain access to an expert clinic of pancreatic cancer patients. Although I work in such a specialised clinic myself, I thought it would be useful for my research to conduct my research in a new setting, assuming this would help me to overcome blind spots. Since I wanted to see as many patients as possible, a large academic hospital seemed a good start. Using my personal network, the access was finally granted in the beginning of January 2016.
Together with one of the surgeons and the specialised nurse who guided me, we decided which patients should be in- or excluded as possible participants in my research. We decided to include all patients who are suffering from pancreatic cancer and to make no differentiation based on whether the cancer was situated in the pancreatic head or tail because the treatment paths of these patients are more or less similar. Other factors that were taken into account were; age (not patients younger than 18) and a good understanding of the Dutch language.
I approached fifteen patients about participating in my research; eight were willing to participate but only four interviews took place. This low number of participants for in-depth interviews was due to different factors which included acute worsening of the symptoms (acute pancreatitis and therefore acute admission to the hospital), patients being unreachable to make an appointment for the interview and two participants were too emotional to participate.
Data collection
This thesis is based on eight weeks of qualitative fieldwork conducted in a large academic hospital in the Netherlands. I accompanied four nurses, one specialized nurse, two volunteers and six physicians. Data was primarily collected through (participant) observations of the ‘pancreas-days’ of thirty-four patients. These conversations are structured by the physician but could have surprising twists and go off-track because of unplanned questions by the patient or by family members of the
patient. During the consultations, I was purely observing and taking notes and I tried to blend in as well as possible.
The aim of this research was explained shortly before the consultations started and informed consent was asked after the short introduction of my research. I conducted four in-depth interviews with patients; in one of the interviews, the partner and daughter of the patient were present during the interview. The interviews were partially guided by an interview schedule and can therefore be considered therefore semi-structured (see annex I Interview Scheme). The interviews were recorded and I transcribed these recordings verbatim.
Because I have observed in different parts of the hospital, I managed to gain data from both the front and back stage of the setting, meaning: I have experienced the tense situation in the waiting rooms, followed the structured conversations in the doctor’s office and heard the personal stories through the informal conversations and interviews with patients and the medical staff. The small vignettes in the data section of this thesis are used to offer empirical examples for my argument but are not meant to generalize my findings.
Observational data was supported by informal interviews with patients and their families and numerous informal conversations with the members of Department O. I have observed in the waiting rooms, the doctor’s offices, attended the morning multidisciplinary meetings (MDO) and during the afternoon multidisciplinary meetings. I observed in the waiting rooms, the doctor’s office, the patient lounge and at the nursing ward. I participated by showing patients the different departments, delivering files at the various offices and providing coffee for patients and the staff. Field notes were written during the day and I wrote them out extensively on the evening of the observational day, or the day after. I tried to recall the conversations by field notes and memory so these are as literal as possible. Characteristics of the patients Due to the small research group (sixty patients in Hospital B each year), I have not looked for specific characteristics. All included patients were diagnosed with cancer in the pancreatic area. It was a general population in terms of socioeconomic status and ages ranged from 35 to 80 years old.
4.3 Data analysis
This research focused on the different elements that influence the decision making process of pancreatic cancer patients to understand the issue of futile care. I have used thematic content analysis to evaluate the data and understand the relationships between thematic concepts and categorized codes. For this process, I have used the step-by-step guide by Braun and Clarke (2008) and the research method of Boeije (2014). Drawing on the viewpoint of Braun and Clarke, I believe it is important to recognize my own interpretation of the data and the theoretical framework (2008, p. 80). The theoretical framework is derived of my decisions, my choices, and as such, I gained my own understanding of the data and influence the outcome (ibid.).
The observational data was written out in detail after every session. The data derived from the interviews was transcribed and coded directly after every interview. First, I used open coding: in every interview section and description of the observations I looked for keywords. Secondly, axial coding was conducted to find the overarching themes between the different fragments. Lastly, I coded selectively to provide insight in the different variations of the codes. I have used the program Atlas.ti to help me in this coding process.
4.4 Ethical considerations
Ethical clearance was granted by the METC (Medisch Ethische Toetsingscommissie) of the large academic hospital according to the requirements of the WMO (Wet Maatschappelijke Ondersteuning). For the observations the physician or I asked for verbal informed consent and for the interviews I asked for written consent via a form together with a letter to explain the nature of my research. On this form, I presented my personal phone number and email address so patients could contact me whenever they had any questions.
During the research I have tried to make sure that patients participated in my research on a voluntary basis. I provided them with an explanation of my research and I often used the time in the waiting rooms to elaborate on this. Generally, I got the impression that patients were curious about my research and me personally and found it comforting to have some distraction while waiting for their appointment. After the consultations, I evaluated per patient if I could do an interview with them. Occasionally, I felt that interviewing the patients was problematic because these persons had just received the ‘bad news’, which is a cancer diagnosis and often there was no treatment available except for chemotherapy. When that happened, I chose to not aim for more participants but focussed on my observations instead. Furthermore, the treatment that the patients were undergoing can be drastic – such as chemotherapy or surgery – so patients could be in a bad condition, both physically as emotionally. This happened with three patients who initially wanted to participate; they were too ill or emotionally exhausted for the interview. Likewise, during the interviews I tried to comfort the patients and when topics were too sensitive or emotional, I did not press for more information. I started the interview with an introduction of my research and myself, again explaining to the patients that they do not have to answer questions if they do not feel comfortable. I emphasized that participation in the research was voluntarily and if participants do not wish to participate anymore during the investigation, they are allowed to withdraw from this research at any time.
The interviews took place in a small office at the pancreas-department. Patients could chose a location wherever they wanted but most of the time they were already in the hospital for appointments so they could visit me before or after the appointment. Most essential was that I could guarantee their privacy in this research. Under no circumstance did I want to challenge their relationship with the physician; as such, I have anonymized the names of the patients, nurses, the physicians and the name of the hospital.
4.5 Reflection
My aim was to study the decision-making process of pancreatic cancer patients who are terminally ill. I assumed this would not affect me too much because I am used to terminally ill patients from of my own working experience in the hospital. I knew beforehand that it was a sensitive and difficult research topic; I had no idea however, that it would touch me so deeply. Consultations were often emotional, especially because loved ones were also involved in the illness process and that is why I chose to write a separate section about the involvement of family in this thesis. My emotional involvement influenced my research findings in the sense that I sometimes had to remove myself from the site because it was too painful to experience another family being devastated by this terrible disease. Moreover, I found it hard to ask patients who had just heard they are going to die for an interview that was purely for my own benefit (conducting research and completing my master’s degree).
Although I did not tell anyone about my medical background, my own positionality definitely influenced the data I collected and the way that I analysed this data. First of all, the language in the hospital was a factor. The medical language and terminology did not distract me and I could understand everything quite easily and notice the use of humour in cancer care. The downside of understanding the ‘local language’ could be that I did not always recognise difficult words or special expressions that are specific for the hospital context, meaning that I was having a different metacommunication compared to that of patients (Briggs, 1986, p. 2).
Furthermore, the data was collected in Dutch, my mother tongue. Translating the interview sections or field notes was difficult particularly to capture the humour, the laughing or the jokes. Some jokes are primarily difficult to capture in words because things are funny because of the way things were said, the tone of the voice or the laughing afterwards. Moreover, some expressions in Dutch are hard to translate so often I provide the Dutch version of the expression in this thesis. It was
disparity, the tense atmosphere or the uncomfortable silences. I hope the choice of my words have done enough justice to the atmosphere and the situation of the patients. One of my American friends has edited the whole text.
Secondly, my positionality influenced the choice of my theoretical approach. The perception of risk always appealed to me, even in my time as an anaesthetic nurse. On the other hand, I discovered practice theory gradually and find this approach interesting in order to analyse the complexity of the modern hospital and the practices that are intertwined within this site. Surely, if I had chosen another theoretical framework, my data would have been analysed differently. Because I experience suffering, pain, loss and illness on a daily basis, understanding this experience on a theoretical level has been more than valuable for me.
Another instance where my positionality might have affected the data collection is when the specialised oncology nurse and doctor introduced me to the patient. This could influence both the content of my data as well as the willingness of the patient to participate. The patient might feel obligated to participate in the research in order to act like a ‘good patient’. The patient might have also felt reluctant to complain about the hospital because of a concern that this could influence their treatment options or relationship with the doctor. It is possible that patients answered overoptimistically about treatment, relationships and other processes in the hospital.
Except for the specialised nurse (my gatekeeper), nobody knew that I was medically trained. This was convenient because doctors and also patients seemed curious about new forms of research and are used to students because Hospital B is an academic hospital. I played my role as a student quite well apparently, because everywhere I went, they asked me ‘what are you studying’ or made jokes when I was writing something down ‘are you enjoying making homework here’? Being a young student, ‘going native’ was problematic because the patients were ill and much older. This might have influenced my research findings because patients might have been reluctant to tell me about their pain and worries believing I could not handle it or understand them, which was true in a sense.
The role of a student was sometimes frustrating and difficult at certain moments and I believe my professional background caused this feeling of
frustration. I felt uncomfortable as a student because I could not do anything for these patients. This explains the way I handle issues like cancer and death: I am normally able to help people that are suffering from this disease, or at least I can pretend to help them, to do something – to perform an act. I reinforce the idea of ‘practice’ myself, by feeling uncomfortable as a student in a professional environment.
5 . R i s k & H o p e
To understand the issue of clinically futile care it is useful to understand the concepts of risk and hope that are involved in the decision-making process. I will argue that the issue of clinical futility is more relevant than ever for the reason that it is being stimulated by a growing sense of reflexivity and a society that has trouble dealing with issues like illness and death. This chapter explores first the way that communicating practices of the medical staff can reinforce the patient’s hope by the use of a particular language and the focus on treatment. I will argue that the health care practices of the medical staff change the patient’s position in this spectrum of risk and hope. The way risk is communicated is important for the decision-making process because risk information is provided in an abstract way, mostly a quantitative form (Thorne, 2006, p. 319). Furthermore, this chapter will show that the reinforcement of hope is not only attributed to the medical staff but also influenced by the patient’s own perspective and the issue of choice when facing death. This chapter concludes with the complex topic of reflexivity in the case of an ‘invisible’ illness like pancreatic cancer. While the feeling of hope and a growing reflexivity expects patients to take responsibility for the treatment of the cancer creating a feeling of control, the incurability of the disease however challenges this process.
5.1 May the odds be ever in your favour –
Susan Collins in Hunger GamesThe notion of risk is an important feature in the hospital: more checklists and safety measurements are introduced every year5. One of the elements of a patient’s safety and risk management is a full understanding by the patient when they agree on surgery or other treatment. Patients (or family, in case of decreased mental capacity) must meet the requirements of full consent otherwise the doctor will not proceed.
Despite the fact that doctors and nurses are aware of the necessity to tell patients about the risks in the light of new treatment or surgery, it still seems difficult to be completely honest with patients because the medical staff does not want to interfere in the feelings of hope (Weissman, 2004, p. 1740). In this way, they may provide a more positive prognosis than is actually the case, as is studied by Lamont and Christakis (2001), where physicians were completely honest about the prognosis in only 37 per cent of the cases (2001, p. 1099). Doctors do not want to challenge the feelings of hope by being realistic. This ‘functional’ approach of hope is shown in the following field notes: We [Laura and I] were about to leave the room when Dr Kooij asked us: and have you been bothered by the interview of van Eijck?6 This interview was in the Volkskrant last weekend. Dr Kooij thought the tone of the article was too negative: ‘Dr van Eijck says that every pancreatic cancer patient dies’. Laura and I look at Dr Kooij questionably. ‘Yes, yes of course this is true but imagine what happens when patients read this,’ he replies.
For Dr Kooij, the interview in the Volkskrant was problematic because it could destroy the patient’s hope, even when there is not a lot of hope left. This reluctance of doctors to be completely honest can be seen as an element of ‘false optimism’. Hak (2000) introduces this concept in the research on ‘false optimism about recovery’ in a clinic for patients suffering from lung cancer. According to Hak: “False optimism about recovery was the result [of] an association between doctors activism and patients’ adherence to the treatment calendar and to the “recovery plot”, which allowed them not to acknowledge explicitly what they should and could know” (Hak et al., 2000, p. 1376). It is a combination between the reluctance of doctors to tell the patient the bad prognosis and the patients who do not want to hear this bad news. Although pancreatic cancer patients do not always have the illusion of temporary recovery like the lung patients in Hak’s research, they experience some
form of ‘false optimism’ that is stimulated by the use of a specific language by the doctors and the focus on treatment (called the treatment calendar by Hak). In the following section these two characteristics are discussed.
The medical staff communicates by focusing on a positive outcome to conceal the problems of pancreatic cancer in order to give the patient some confidence. The following sentences illustrate this: ‘that’s real positive, you are in a good condition’ (before somebody goes into surgery) ‘the chemotherapy went well didn’t it?’ (when there was nothing more to offer), ‘That’s the good news, there isn’t any progression (the tumour didn’t grow larger, but couldn’t be operated)’ or ‘there are some insecurities but we will work on that’ (when the doctors found metastases which means the patient cannot be operated)7. An alternative way to provide (emotionally loaded) information is the presentation of the exceptional individual. Patients are told that they are a unique case and that it therefore was difficult to give a clear prognosis (Hak et al., 2000, p. 1378). For instance, a patient asked the specialized nurse bluntly: ‘Will I die?’ and the nurse answered: ‘We don’t know, we have too little knowledge of this particular disease’8 but she was in fact going to die from this because this patients could not be operated on anymore, whether or not she had an unknown illness. Patients also employ this strategy, for instance they elaborate on the complications of this surgery but maybe they will walk out of the hospital in four days if everything goes according to plan. Additionally, when patients start with chemotherapy a patient told me: ‘[t]here is a large group of people that, in the ehh, have long term chemotherapy, that pull out it of excellent!’9 Moreover, in observations during fieldwork it was often the case that doctors could not exactly tell what was going on and used this vagueness to conceal the issue. In other words, clinical uncertainty may be deployed to encourage feelings of hope (Schildman et al., 2013, p. 2447).
The second characteristic of false optimism is the focus on treatment, Hak (2000) calls this the ‘treatment calendar’. When treatment is offered by the
7 Data derived from observations during consultation 8 Data derived from observations during consultation 9 Data derived from a qualitative interview
physician, dates have to be fixed in order to receive the chemotherapy, radiotherapy, surgery or potentially experimental treatment. The treatment calendar therefore serves as a distraction for the near future in the illness trajectory (Hak et. all, 2000, p. 1378). This is consistent with a study by Ong and et al. (2000) on patient satisfaction and communication that found that oncologists’ communication ‘consisted of almost 2,5-times more cure-oriented than care-oriented behaviour’ (Ong et al., 2000, p. 154). During consultations, when the doctor dropped the ‘bad news’, for instance that the tumour could not be removed, the immediate response of the doctor was to offer another treatment that was not curative, such as chemotherapy. During my observations this happened in most cases and the following section derived from my field notes illustrates this: A woman with a yellow-coloured skin is entering the doctors’ office; she looks very tired and moves real slowly to the chair. It seems like she has lost a lot of weight in the last period because her clothes hang loosely around her fragile body. Another woman takes the place next to her; she introduces herself as the sister-in-law of the patient. The contrast between the two ladies is harsh; the sister-in-law looks healthy and strong and is even a little overweight. Mirja, the specialized nurse, looks serious and I feel the tension rising in the room because I know what she is going to say as we just discussed it in the afternoon meeting. ‘It’s bad, you have cancer’ she says straightforwardly. The patient looks at her sister-and-law, sighs deeply, and says: ‘I thought so already’ and wipes the tears from her eyes. Mirja continues: ‘We want to treat it quickly because this isn’t going to get better’. She continues explaining the importance of a bypass or a double bypass to detour the pancreas so the gal obstruction will be dissolved. ‘Furthermore’ Mirja continues ‘we don’t have any treatment to cure you, only to postpone the process, that therapy is chemotherapy’. The patient looks shocked and overwhelmed.
nurse entails offering treatment possibilities. What this example also shows is that there was some confusion because the first treatment offer that Mirja gave was not comprehended as a palliative treatment (in other words, a treatment without a cure). Only when Mirja emphasized that there was no curative treatment, the message was understand by the patient. Hak et al. (2000) recognized this and explains the ambiguity of the word ‘treatment’:
“If the doctor stated that “this tumour can be treated” (meaning that there are treatments that prolong life), the patient heard that “something can be done about it – in other words that he or she “can be cured”” (Hak et al., 2000, 1379).
The nature of doctors is to treat patients and that is what they learn in their education – they are aimed at diagnosis and prognosis of illnesses (KNMG, 2015, p.27). According to Hak et al. patients embrace this process, so they can “forget the future and focus on the present that is full of action (treatment, tests, etc.)” (2000, p.1380). Thus, as Hak et al. concludes in this research, ‘false optimism’ was not only because of the reluctance of doctors to provide a honest prognosis because the doctors don’t want to interfere in the feeling of hope; also the patients played a big role in keeping up appearances.
These examples show that hope is functional (Olsman et al., 2013), as means to cope with the impact of the pancreatic cancer. Doctors go to great lengths to maintain the hope and unfilled space is filled with aspects of hope. This makes decision-making more complex because hope creates more treatment possibilities that in turn play on patient’s desires. The ambiguity of the word ‘treatment’ complicates the decision process even more because it gives the misconception of recovery: patients still seem to hold out great hopes for treatment, even though these treatments are experimental (KNMG, 2014) because why would it be offered if it was not beneficial? Thus, both the treatment calendar and communicating in a positive way are attributing to clinical futility and influence the decision-making process.
5.2 Practicing hope
Receiving a cancer diagnosis turns the world upside down for patients and their loved ones. It can be seen as a ‘fateful moment’ (Giddens, 1991), a happening that changes the continuities in life and is “threatening for the protective cocoon of the individual” (Giddens, 1991, p. 114). Being diagnosed with cancer means entering a new world of insecurity, choices have to be made and it is difficult to foresee what happens in the near future. One can try to imagine what one might want to see in the near future; this imagination can be described as the feeling of hope (Simpson, 2004). Hope also changed my view on the treatment of pancreatic cancer during this research. At first, I was convinced – derived from my working experience – that surgery was not the most beneficial option for patients. I was genuinely surprised that everyone I met, without exception, chose this treatment. Later, when I got to know the patients and their wishes, I noticed myself wishing for the option of surgery during MDO. Interestingly, the hopes and wishes of the patient changed my own perspective on the treatment of pancreatic cancer.
Hope is a complex phenomenon and a fair amount of authors have written about this concept (Brown, P. & de Graaf, S., 2015; Clayton et. al, 2008; Schildman et al, 2013). Hope can be paralyzing and can give patients a wrong perspective, also known in the therapeutic setting as having ‘false hope’. Where Zinn (2008) describes hope as a behaviour that occurs when someone is vulnerable, Simpson (2004) approaches hope differently, as an ‘emotional attitude’ that can make patients vulnerable.
According to Simpson, a patient is vulnerable because the patient shares their hope with the doctor. When the doctor reacts negatively on these shared imaginations or rejects the one thing a patients hopes for, the patient finds themselves in a vulnerable position (Simpson, 2004, p. 443). This vulnerability is for instance, noticeable when patients are visiting Hospital B for a second opinion. During my observations, I experienced quite often the disappointment when the medical staff offered these people only experimental palliative treatments: ‘We
thought you could do more’ and ‘I thought you were a specialized clinic’10 were phrases I heard regularly. When patients opt for a second opinion they often believe Hospital B will do experimental studies and therefore they think this might be lifesaving. The opposite is true, most of the treatments Hospital B can offer more than other hospitals are studies in the palliative sector and therefore are ‘only’ life prolonging. Mirja explained to me that patients often have high and unrealistic expectations of this second opinion. The following field notes will illustrate another case where the patient, Mr. Ranoj, had high expectations of the medical staff, but his hopes were not met:
Dr. Broeders [surgeon]: Can you let me finish this? This is a dreadful
situation, and insecure. Major surgery will harm you without benefit. Therefore, we go this far to determine what’s going on. You hope for a treatment that we cannot offer you.
[The patient Mr. Ranoj continues by telling a story about military service, when they also discovered ‘spots’ in the lungs but that they made various scans and that he could finish military service easily without problems]
Dr. Broeders: Well, when I look at you now, the pancreatic cancer is
progressed more than we want it to be. And I even wonder whether your body is able to handle the chemotherapy?
Mr. Ranoj: Well, I have met researchers of Hospital B at my house and they
said that I was in a good condition. Furthermore, I wonder whether medics, professor Broeders, aren’t they stuck in an established routine?
Dr. Broeders [a little agitated]: Yes, luckily we are working routinely. You
have to take my word that we want the best for you.
Mrs. Ranoj: Absolutely nothing happens..
Mr. Ranoj: Well, I recently read an article about lymphatic cancer, and the
PET-scans seemed to be promising. This same author says that medics are in a steady routine.
Dr. Broeders: Yes, and this author is working here in Hospital B right? (He
