Recursive Health Care Structures and Choice in the Manner of Our Dying

On Auto-Ethnography: A Method Definitely Not Chosen

Before Truus became ill, I received a grant from the Norwegian Research Council for a project on care-at-a-distance, with a special focus on palliative end-of-life care. The project was designed in such a way that there would be no need for me to enter into the private space of those in their terminal phase. But instead of starting my work as a researcher, I now became a partner/researcher and gained therewith access to the private space of at least one dying person, my wife’s, in our home.

Truus informed all those whom she came in contact with, physicians and nurses, that I would be doing research on palliative care and that I, therefore, had a research interest in their work as they were doing it. I kept a diary, observed, and did several follow-up interviews with the anesthesiologists and home and palliative care nurses most directly involved in the provision of care to us.

When thinking about ways to tell the story, I was inspired by reading Janelle Taylor’s (2010) auto-ethnographic account of the entailments of her mother developing dementia. “The research on which I report here,” she writes, “is of the decidedly unchosen variety, thrust on me by life-changing losses that I would have avoided if I could, but from which I have learned a great deal nonetheless.” She takes a question that was often put to her, “Does she recognize you?” as the entry point,

for an enquiry into recognition, its linkages to care, and what these linkages imply—for people living with dementia, and for the rest of us, the “Temporarily Able Brained” who share a world with them today, and who may ourselves join their ranks in the future. (Taylor, 2010, pp. 27–28)

In qualitative research, auto-ethnography is both a method and a genre (Chang, 2008; Reed-Danahay, 1997). Auto-ethnography is an approach to research and writing that seeks to describe and systematically analyze (graphy) personal experience (auto) to understand cultural experience (ethno; Ellis, Adams, & Bochner, 2011). I did not, from the outset of the research project, choose auto-ethnography as a method, but I am choosing the genre as a way to communicate and share our experiences. In a tug-of-war with objective and distanced research, auto-ethnography stands on the other side of the rope and recognizes one’s own experiences as an important frame of reference. Auto-ethnography reflects the changing conception of both the self and society in the late 20th century. It is a form of autobiographical writing relating life (hi)stories but always with an ethnographic interest. Auto-ethnography merges genres and breaks down the boundary between the subjective and the objective (Reed-Danahay, 1997, p. 2). Autobiography becomes ethnographic at the point where the narrator understands his or her personal history to be implicated in larger social formations and historical processes (Russell, 1999).

Although he does not use the term, Per Solvang’s (2002) book on being different, Annerledes, illustrates how. He shows how being a village punker, a class traveler, and hairless (a condition called alopecia universalis) gives access to an analysis of subcultures, social mobility, and stigmatization, as well as multiple and different constructions of normality. In auto-ethnography, the author’s own experiences are put into a recursive relationship with society and culture, with the ways in which we do our lives and our death.

Carolyn Ellis (1995) has written a book-length auto-ethnography, Final Negotiations, accounting in detail the attachment, chronic illness, and finally loss in her 9-year relationship with her partner who died in 1985 from emphysema. In Revisions (Ellis, 2009), she wrote about “surviving the loss of my brother.” That book contains a remarkable passage by Arthur P. Bochner, relating his bodily, emotional response to reading Ellis’s account: “I felt the pressure squeezing in my chest . . . the tightness in my throat, holding back the swell of sadness inside me . . . and I could no longer stifle my tears, which flowed freely down my cheeks” (Bochner, 2009, cited in Ellis, 2009, p. 145). Auto-ethnographies speak about the author’s embodied and affective engagement with the world and with life-changing losses. Bochner tells of his affective engagement as a reader of such accounts and the embodied, affective responses they provoke. Auto-ethnographies do not reproduce the “bifurcation of consciousness” that is constitutive of much research: the splitting of affective matters from the experience of doers and readers of scientific inquiries (Puig de la Bellacasa, 2011, p. 97). The personal and the emotional are weaved into our understanding and in our choices and, although seldom expressed in writing, shall also have their place in research. Exactly what that place will be and how emotions are linked to cognition and action are a matter of ongoing investigation and reflection.

Auto-ethnographic writing about illness, death, and bereavement merges seamlessly with the narrative turn in anthropological studies of illness and healing (Mattingly, 1998) and with other illness narratives written by scholars for whom reading and writing are natural states of being and ways for dealing with life’s challenges. Arthur W. Frank, author of The Wounded Storyteller (1995), The Renewal of Generosity (2004), and Letting Stories Breathe (2010), wrote in At the Will of the Body (1991/2002) about his experiences during two episodes of critical illness, his acute heart condition, and his more unsettling diagnosis of and treatment for testicular cancer. Of particular interest for this article is Susan Gubar’s (2010) Memoir of a Debulked Woman, her narrative of being diagnosed with and treated for ovarian cancer.

This is a personal document. In it, I have tried to find a proper balance between the preservation and re-enactment of Truus’s voice, my own experience as her partner, and my voice as a researcher when I put these in a societal and cultural context. This narrative will be successful when it touches, engages you as a reader, and stimulates private and professional reflection.

Diagnosis, Prognosis, and Plan

The diagnosis is established in a Dutch university hospital. It is Wednesday. I have to wait outside while an abdominal ultrasound examination is conducted at the Department of Radiology. It takes 5 minutes until Truus comes out, summons me to her, and says one word, “ascites.” Then I know, and I know that she knows, without saying or thinking all thoughts explicitly. Topping the differential diagnosis list for ascites in an almost 67-year-old woman is ovarian cancer. More ultrasound examinations show unbounded tissue masses on both sides, where one expects the ovaries to be. An X-ray of the chest shows pleural fluid adjacent to her left lung. Several liters of viscous, yellow ascites fluid are drained from her abdomen. The physicians arrange for a CT scan 2 days later and an appointment at the oncological center 1 week later. We go home early in the evening.

Truus does not sleep much that night. She spends several hours in our study. The next morning, she has reached a conclusion about her prognosis: 1 to 4 months. Then we cry, tears flow, the first of many. Then we talk together. This will be her cause of death. The questions that remain are when, where, and how.

That day, on Thursday, Truus chooses a palliative trajectory and rejects aggressive cancer treatment. Truus then issues a non-resuscitation order. She alone makes that decision. “What do you want toward the end, your last hours?” I ask. “At that point I just want to sleep” she says determinately. As we talk more about what would be the right point and who should decide about this, Truus is explicit about that that would be a decision that is hers to make. Truus is not afraid to die. However, she denounces that other people decide whether she suffers sufficiently to allow her to sleep when the moment is there!

On the same day, she starts organizing what we in the Netherlands call mantle care, the informal care that is provided by next of kin, family, and friends.

Then she says that she wants us to take a walk on Sunday. She wants to find out whether an alternative and different natural graveyard she heard about can be the place where she wants to be buried. It is hard to choose a grave site for her, a crash course in Have You Accepted That I Must Die?, the title of a book written by our professor in medical ethics (Sporken, 1981), who taught us, young medical students, to talk about and relate personally to death.

In the days that follow, in many conversations with our daughter Helene, with brothers and sisters, family, friends, and colleagues, it is Truus who takes the lead. “Tears,” she says, “are feelings that you cannot express in words, yet.” When the crying and tears subside, she helps us to associate words to our feelings, to talk about death, her death, and ultimately our own.

Meeting With a Treatment-Tenacious Culture

The appointment at the oncological center raises the question, “Are we jumping to conclusions?” We try to be open to discussing and evaluating new knowledge and new treatment results. We are met by a professor in gynecological oncology and a young female physician in training to become a specialist. The professor puts forward just one treatment proposal with low survival rates: three treatments with chemotherapy, followed by a so-called debulking operation, followed again by three infusions with toxic chemicals. He explains to us that a debulking operation implies that the womb and as much as possible of the tumor mass in the lesser pelvis are removed, that the tumor-infested omentum—a large fold of the abdominal lining suspended from the lower rim of the stomach—will be removed, and that the sheet lining the abdominal cavity, the peritoneum, on which metastases grow as vegetations, will be peeled off. We learned the meaning of the word iatrogenic already in the 1970s, in medical school, reading Ivan Illich’s (1976) Limits to Medicine. In this professor, we met a medical culture characterized by treatment tenacity.

The professor does not mention that debulking may include removing parts of the (cancer infested) intestines and that she may wake up after the operation with an ileostomy or a colostomy, that is with artificial intestinal outlets on the surface of her belly, discharging fecal material into a pouch with the intermittent pulse of peristaltic bowel movement. Loss of control over bowel movements is perhaps one of the most fundamental forms of loss of (corporeal) autonomy (Gubar, 2010).

Neither does he mention that the debulking operation that he proposes is a so-called interval debulking. It is a debulking executed in the interval between two sets of chemotherapy treatments. Interval debulking is an indicator of the advanced stage of the disease. The standard treatment for ovarian cancer is primary debulking followed by several rounds of chemotherapy. However, when primary debulking is not deemed possible because of the extent of tumor invasion into adjacent tissues, three rounds of intensive (high dose) intermittent chemotherapy are given to reduce tumor mass before surgical intervention. In any case, debulking will not be able to remove all cancerous tissue. Leaving patches of tumor behind does not mean that the operation has failed. To the contrary, optimal debulking is defined as a surgical operation leaving in place patches of cancerous tissue no larger than 1 cm in diameter (IKN, 2009, p. 20).

The interval variant of debulking confirmed the advanced and incurable stage of the disease that we had gleaned from the day the diagnosis was established. So did the pleural fluid between the left lung and the wall of the chest. According to the staging scheme for the spread of gynecological tumors in the body, developed by the International Federation of Gynecologists and Obstetricians (FIGO), tumors that present with changes above the diaphragm qualify as Stage IV. Technically, the staging procedure would require the demonstration of malignant cells in the pleural fluid. In our case, only peritoneal ascites were extracted and sent to the laboratory for cytological examination; yet for us the pleural fluid showing up on the chest X-ray already suggested the advanced stage of the disease. That is what we both learned during medical training in the 1970s. The details of the current national standard for treatment of epithelial ovarian cancer (IKN, 2009), including the reasons for and implications of an interval debulking as opposed to primary debulking, were available on the Internet and accessed by Truus during the hours she spent in our study 1 week earlier.

Truus points out to the professor that he forgot to mention in his treatment proposal the alternative possibility of not treating the cancer. “Everything you propose will make me sicker than I already am” she says. Truus herself brings up the possibility of a palliative trajectory. She is clear that this is the avenue that she wants to take, choosing quality of life rather than more time. Without being tethered to a hospital, a palliative trajectory will allow her to visit places and meet people who have been important to her. Of course, Truus has the legal right to refuse treatment, and the professor has no other choice than to respect her decision. Yet, his quiet acceptance of her choice does strike me as odd. He does not defend his own proposal for treatment, as if he does not believe in it himself. So why did he not bring up the alternative of palliative care? Instead, he makes another attempt to enroll her in his aggressive treatment regime. Acknowledging that Truus wants to visit Adelboden one last time, he offers her to do some preparatory work for chemotherapy before we leave for Switzerland. This would require referral to another oncologist at the center and taking some blood samples for laboratory work. In case Truus would change her mind and accept aggressive treatment after all, everything would be ready for the first round of intensive chemotherapy upon our return from Switzerland, with no more time being lost. At one point in the conversation, he also offers a round of chemotherapy as palliative treatment. If the tumor is responsive to the treatment, the round of chemotherapy will slow down the production of ascites in her abdomen, giving her more time between punctures. Truus refuses both offerings.

When we leave the room, the young female physician, with a delicate touch on the arm, whispers to Truus, “I think you are a courageous woman!” demonstrating who of the two is the better doctor. ¹ Coming from the meeting where assembled specialists discussed diagnostic findings and treatment options in cases of advanced ovarian cancer, the professor speaks with a professional voice that assumes itself to be self-sufficient, assuming that Truus will subscribe to the center’s motto of “We will fight together!” In doing so, however, he does not recognize her. Whereas the professor embodies and enacts the logic of an oncological clinic that transforms patients into objects of treatment, the female physician in training enacts a relationship of care. “Care,” Frank (2004) argues, “can only be a relationship, a dialogue not only of words but of touch” (p. 27). Or as Puig de la Bellacasa (2011), thinking with Donna Haraway, puts it, “care is a doing necessary for significant relating” (p. 98). Brief as the encounter is, both the delicate physical touch and the whispered encouragement touch Truus emotionally and enduringly, because in it she is being recognized, and the choices that she makes for herself and us are validated.

Before we leave the hospital, Truus accepts one final offer, perhaps out of a hidden urge to perform as a compliant patient after refusing treatment. She accepts to meet with an oncological nurse to get some advice on nutrition. The meeting is ad hoc, and I must admit that the nurse had no time to prepare. However, this is the kind of situation in which you will get the default response, the response that is given unthinkingly because it is embedded and entrenched in the center’s culture. Instead of inquiring what is important for Truus, the first thing the nurse says is that it is important to maintain an as-good-as-possible nutritional status to tolerate chemotherapy. So wrong! Truus wants to use the little appetite she has to eat Geschnetzeltes nach Züricher Art, evoking memories from the formative years she worked in the staff of an international scouting house, Our Chalet, in Adelboden, Switzerland. Or cloudberry cream, evoking memories from that time in 1976 when I, freshly in love as we were, ate cloudberries for the first time, from her hand, on a rainy day on a cloudberry marsh at Hergot.

For Truus, palliative care is not a phase in a linear treatment sequence, the transitions between phases being subject to specialist medical judgments. This is how the treatment sequence is presented in the professional literature on palliative medicine, progressing from curative → life extending → palliative → death → grief (Kaasa, 2008). Contesting the specialist’s medical judgment, palliative care, for Truus, is an alternative to life-prolonging treatment. Imagine yourself standing on a pass in the mountain range, the pass giving access to different valleys where people live their lives. The valleys are characterized by their specific cultures, dialects, and logics. ²

Conceptually, the valley is a metaphor for what Annemarie Mol and John Law (2002) call “modes of ordering,” the study of which is concerned with the ways socio-material orderings come into being and with the power involved in that process. Multiple modes of ordering (plural) exist simultaneously, sometimes going comfortably together, giving rise to frictions and oppositions at other times and places. Modes of ordering and their logics are not hermetically closed entities; they are fragile and open. The term logic as it is used here should not be understood in a strict, mathematical sense. As Annemarie Mol (2008) puts it, the term logic, as applied in the study of practices, refers to the sense in which

locally, some things are more comprehensible than others. Events somehow tend to fit together, there are affinities between them. . . . It asks for something that one also might call a style. It invites the exploration of what is appropriate or logical to do in some site or situation, and what is not. It seeks a local, fragile and yet pertinent coherence . . . [that] may be implicit: embedded in practices, buildings, habits and machines. (p. 8)

These notions convey an image of more or less fluid and adaptable, evolving, and, therefore, historical recursive structures into which one can enter, like a wilderness trail that evolved through repeated, iterative use. Walking the trail is much more cost-effective than negotiating the adjacent terrain. But you have to make sure that the trail takes you where you want to go. If one enters, the recursive structure suggests a low-energy and low-resistance trajectory. The valley metaphor, with its suggestion of altitudes and gradients, implies that these modes of ordering and logics emplot or script, to use narrative terms (Frank, 2010, p. 134 ff.; Mattingly, 1998, p. 13), for certain courses of actions, events, and outcomes more than for others. There is path dependency. Once you have chosen, it is not impossible to get out of the valley, but it will require working against a gradient.

Truus has chosen the palliative valley down from the pass and, therewith, turns her back on the valley imbued with treatment tenacity. The two meetings at the oncological center, with the professor and with the nurse, confirmed for her, for us, that she has made the right choice.

Sources of Treatment Tenacity: The Emergence of Oncology

Although Truus refused the treatment offer, she could not leave behind this meeting with the gynecological oncologist. It occupied her mind for weeks to come and drained her for energy she could have spent on more positive endeavors. She started but never finished a letter to speak her mind, to say all the things she left unsaid out of politeness.

Although we were not specialists in gynecological oncology, the professor should have realized that both Truus and I had a background in medicine. He should have inquired how we had been doing after we returned home last Wednesday; how we understood the information we gleaned from ultrasounds, X-rays, and ascites punctures; and what conclusions, if any, we had reached. But how much of this dissatisfaction really hits home on the personal, individual level of attitude, intentions, or communication skills? The oncological nurse’s default response confirms that the professor also was an instantiation of a culture, that he in this meeting with us performed a treatment-tenacious culture. But where does this tenaciousness come from?

In their book, Cancer on Trial, Keating and Cambrosio (2012) provide an account of the establishment and growth, from the 1950s onward, of collaborative groups in clinical cancer research, first in the United States and thereafter in Europe. As a new kind of institutional arrangement, these groups were both centralized and distributed. They established central bodies for approving trial designs and institutions for managing and processing data. They were distributed in the sense that the trials involved multiple hospital sites and cancer centers where patients were diagnosed, treated, and enrolled into clinical trials. Not without frictions and controversies, over the years, the work conducted by these collaborative groups moved from discovering and screening chemicals for anticancer properties against a range of different types of cancer toward the systematic comparison of different treatment modalities and combinations of them for specific types of cancer. It was very much a program that established chemotherapy as a treatment modality for cancer, as an alternative for or as an addition (adjuvant) to the extant treatment modalities of surgery and radiotherapy. The familiar present-day form of intermittent, intensive, combination chemotherapy is a result of this work.

Collaborative groups did not just apply established methods of randomized clinical trials and statistics. Over the years, these groups tinkered with and developed new clinical trial designs, and associated statisticians invented new statistical techniques. In addition to reducing tumor size, the single most important effect variable was survival rate, expressed as the probability that the patient is still alive past a specified date, after 1 month, 6 months, a year, 2 or 5 years. Collectively, this new style of practice constitutes an all-out assault or war on cancer, which translates into an all-out assault on the cancer-in-the-patient’s-body on an individual level.

Transforming the Disease and Its Course

Keating and Cambrosio (2012) use Michel Foucault’s notion of dispositif, often translated into English as apparatus, to describe and understand the growth of these new institutional arrangements, trial designs, statistical techniques, and cancer centers, all of which are constitutive of present-day oncology. With this term, Foucault (1980) refers to

a thoroughly heterogeneous ensemble consisting of discourses, institutions, architectural forms, regulatory decisions, laws, administrative measures, scientific statements, philosophical, moral and philanthropic propositions—in short the said as much as the unsaid. Such are the elements of the apparatus. The apparatus itself is the system of relations that can be established between these elements. (p. 194)

John Law’s (1994) notion of “modes of ordering” (pp. 21–22) is inspired by Foucault’s notions of discourse and dispositif, putting more emphasis on their emergence, multiplicity, and interaction than Foucault does. Both Foucault’s dispositifs and Law’s modes of ordering are generative in the sense that they, as particular and historically contingent assemblages, produce and perform the world they are ordering. With regard to the new oncology, this is apparent on at least three levels.

First, the evolution and history of cancer after the Second World War is the evolution of the disease under specific treatment regimens; it is a treatment history rather than a natural history. Keating and Cambrosio (2012) argue that systemic cancer treatment intervenes in the biology of the disease. Today, it is more apparent than ever that cancer is not only a clonal disease, meaning that the origin of cancer cells can be traced back to a first, single cancerous ancestral cell that, having acquired the capacity of limitless cell division, gives rise to limitless numbers of descendants. Cancer is also adaptive. Or as Mukherjee (2010) puts it, cancer is a clonally evolving disease. Due to some degree of genetic instability, every generation of cancer cells creates a small number of cells that are genetically different from their parents. With each volley of chemotherapeutic drugs that does not kill all cancer cells, a few mutant clones that can resist the assault grow out. “This mirthless, relentless cycle of mutation, selection and overgrowth,” Mukherjee (2010) writes, “generates cells that are more and more adapted to survival and growth” (p. 39). This is clonal selection as it was described by Burkett for the immune response and by Edelman for brain development. “Cancer thus exploits the fundamental logic of evolution unlike any other illness. If we, as a species, are the ultimate product of Darwinian selection, then so, too, is this incredible disease that lurks inside us” (Mukherjee, 2010, p. 39). In a sense, the war on cancer is a war on life itself.

Second, related to the first point, cancer treatment regimens coproduce the disease phases of remission and relapse. As the apparatus of collaborative groups matured, clinical trials targeted specific disease phases: trials for initial treatment, trials for first remission, trials for relapse, and so on. The disease at relapse was no longer the same as the disease initially diagnosed, requiring new drugs or new drug combinations. Without chemotherapeutic treatment regimens, these phases would not exist. Probabilities of remission induction, duration of remission, or time to relapse are all versions of survival. These are the common effect variables in clinical trials targeting these phases.

Third, at an individual level, cancer treatment regimens produce the protracted courses of disease, including the harm done to patients as a result of the all-out assault nature of the treatment that so many present-day cancer patients go through. The suffering caused by the treatment can be far greater and protracted than the suffering caused by the disease itself. At least part of the suffering cancer patients go through is iatrogenic, that is, caused by the treatment. It is a high price patients pay. Whether it is worthwhile to pay that price, considering a patient’s individual balance sheet of suffering, is another question.

Articulations Producing the Default

In the Netherlands, the growth of collaborative groups and clinical cancer trials articulated with two other processes. One is the centralization of advanced cancer diagnostics and treatment into a limited number of university hospitals. In these hospitals, clinicians also hold research and teaching positions in the associated university. In some instances, the medical faculty and the hospital merged into one organization, going one step further toward integrating teaching, laboratory, and clinical research with patient care.

The other is the work of professional associations. Dutch gynecologists and obstetricians established the Dutch Association for Obstetrics and Gynecology, which spawned a special Working Group for Oncological Gynecology (WOG). This working group initiated the formation of an interdisciplinary committee for the development of national guidelines for diagnosing and treating gynecological cancers. In 2004, 11 consensus-based guidelines for gynecological cancers were made available through a website, www.oncoline.nl. Published in 2009, the guideline for epithelial ovarian cancer was the first to be reworked to make it evidence-based, the hybrid form that combines clinical experience with results from clinical trials and other scientific research (IKN, 2009). Participants for the working groups authoring specific guidelines were to a large extent recruited from academic oncological centers. Hence, as a patient entering these centers, you may encounter a clinician with a name tag that says professor and who has a vested professional interest in authoring the guideline for the type of cancer that you are being diagnosed with and treated for. It is no surprise that clinicians with such a professional vested interest tend to exhibit a high degree of compliance with the national standards and guidelines they themselves have co-authored. The national standard becomes the center’s default treatment offer. Keating and Cambrosio (2012) argue that the involvement of cancer clinics in multi-center clinical trials often also transformed the routines for diagnosis and treatment for cancer patients who were not enrolled in clinical trials. This is a fourth sense in which the apparatus of oncology is generative.

There would be no dispositif or apparatus of collaborative groups and clinical trials without clinicians willing to enroll their patients in these trials and without patients willing to enroll in them. The apparatus of oncology feeds on what the 17th-century Dutch philosopher Spinoza, in Part III of The Ethics (1667), called conatus: “Each thing, as far as it can by its own power, strives to persevere in its own being,” and “the striving by which each thing strives to persevere in its being is nothing but the actual essence of the thing” (cited in Damasio, 2003, p. 36). Spinoza’s conatus subsumes both the impetus to preserve life in the face of danger and homeostasis: the living organism’s capacity to maintain the coherence of its structures and functions against numerous life-threatening odds. In Damasio’s (2003) current biological terms, Spinoza’s conatus is “the aggregate of dispositions laid down in brain circuitry that, once engaged by internal and environmental conditions, seeks both survival and well-being” (p. 36). Panksepp and Biven (2012) would call this automatic strive to preserve life an unconditioned response that is hardwired in the deeper, emotional midline structures of the mammalian brain. However, the impetus to preserve life is not absolute. We know that human beings can self-destruct or self-sacrifice for a cause external to themselves. Damasio (2003) goes on to say that, building on the device of emotions, biological evolution led feelings into “a fruitful combination with past memories, imagination and reasoning [leading to] the emergence of foresight and the possibility of creating novel, non-stereotypical responses” (p. 80). “With time and education,” Panksepp and Biven (2012) argue, “the higher brain functions develop recursive supervisory (executive) control over emotional expressions” (p. 480). It is possible to refuse treatment and accept that death is imminent.

“We Will Fight Together!”

When confronted with a cancer diagnosis, especially advanced cancer, a patient’s life is turned upside down. One’s own familiar and reliable body has bred a double of itself that now, like a foreign invading force, expands inside one’s body, “invading through tissues, setting up colonies in hostile landscapes, seeking ‘sanctuary’ in one organ and then immigrating to another” (Mukherjee, 2010, p. 38). The double recruits the body’s resources for its own excessive growth, only to be limited by the death of its host. It is no surprise that the impetus to preserve life kicks in, especially when one has never reflected seriously on the possibility and conditions of one’s own death.

It is likewise no surprise that newly diagnosed cancer patients are disposed to accept aggressive cancer treatment, especially when that aggressive treatment is the only option offered. This is not a simple matter of informed consent. The impetus to preserve life, the wish to keep on living, is the body’s immediate, pre-reflexive, emotional, and affective response in a situation in which that same life is threatened.

The encounter between the patient and clinician takes place within a dispositif that is imbued with a discourse that morally obliges the patient to fight. “We will fight together!” the clinic says through the title of one of its patient information brochures. We will fight for your life, for your survival. The unsaid implication is that the clinic expects the patient to fight the cancer too, to be courageous and undergo interventionist diagnostics and aggressive treatment. Fight for your life! Even if the chances for long-term survival are slim, you have to fight for more time with your partner and with your children; you have to fight to help us develop more effective treatments that will benefit future generations of women.

The apparatus produces its own heroes and heroines: the clinician–scientists who devote their careers and their lives, to the war on cancer, and the courageous women who endure the all-out assault on their bodies and their minds in a desperate attempt to prolong their lives. The apparatus also produces its own cost–benefit analysis. The time gained and the life experiences therein must be greatly valued to balance the magnitude of harm, suffering, and anguish that result from the aggressive treatment. Or is perhaps the daunting idea of no-longer-being-alive sufficient to tip the balance in favor of aggressive treatment? In any case, the suffering avoided by not choosing aggressive treatment does not fit into the logic of this calculus. In mathematics, multiplying with the number zero makes no sense. Life not lived cannot be valued in the moral calculus of cancer treatment.

This was the treatment-tenacious edifice Truus encountered when walking into the oncological center of the university hospital, and the apparatus we confronted in our meetings with the professor and the nurse. This is also the apparatus we leave behind as we walk out of the oncological center’s doors, through the hospital’s long corridors and skywalk to our car in the parking lot, never to return.

Woman With Cancer, but Not a Cancer Patient

We travel to our home in the vicinity of Narvik in the middle of July, 2011. Just a few days later, “22/7,” July 22, the day of the terrorist attack on governmental buildings in Oslo and on the summer camp of the youth organization of the Labor Party, puts our own problems in perspective. The disease that will be the cause of Truus’s death will after all be of her own body.

Truus is sensitive about language. “I am a woman with cancer, but I do not want to be a cancer patient,” she says one of the first days after the diagnosis is established. She rejects a militant language that turns the disease-of-her-body and death into enemies that attack us from the outside, and that must be fought, lest we run the risk of getting killed by them.

I have Per Fugelli’s (2010) book Døden, skal vi danse? [Death, Shall We Dance?] at home as part of my research literature. In Norway, Per Fugelli is a well-known professor in social medicine, public discussant, and critic. While working on a book about death, he was diagnosed with cancer, which turned his writing into an auto-ethnographic project. Truus reads Fugelli. She marks a number of paragraphs where Fugelli, with Nils Christie (2009), writes about monopolizing words and categorizing identities. She reads aloud for me:

Maybe the worst is to die. But the sentence falls before death. . . . What is implied in the notion of “cancer patient?” Nothing of that what I see of most among my fellow patients: almost self-denying care for next of kin, generosity with regard to health care’s faults and imperfections, the sensitivity for the essential that comes with being threatened for your live, an endurance of suffering that makes you proud to be human. No, the stigma “cancer patient” implies mainly weakness and misery. “Cancer patient” contains what healthy hip-hurray people fear and loath: pain, nausea, dependency, uncleanliness, emaciation and death. (Fugelli, 2010, p. 51)

Truus reads on. “Of course I am affected by being severely ill and maybe die soon. But I want to control this change of Me myself. I do NOT want my self-image to be determined by the other’s view” (Fugelli, 2010, p. 50). “Is there somebody who tries to steal me?” Fugelli (2010, p. 49) asks. The reductionism that comes with labels like cancer patient constitutes a form of identity theft that is in kinship with the often perfunctorily performed de-identification, or anonymization, of the weak and vulnerable in narratives of suffering and dying. By denying them their name, we also deny them a voice of their own. That is why Truus was so adamant in her insistence that I should not de-identify her when writing about her death. Fugelli (2010) writes about a gravestone that touched him. “Here lies Nate Lowman . . . Victim of identity theft” (p. 49). Fugelli lives in our valley and speaks the dialect that belongs to it.

“Now I Must Help Her to Die!”

“Now I must help her to die!” I can recall the bodily emotion I felt when this realization hit me. “This is the most important and simultaneously the most difficult thing I must do for her, in her and in my life!” Not many moments pass before I think the next thought: “I have to be careful saying this in Norway!” It is a short distance and downhill from helping to die to aktiv dødshjelp, active euthanasia. But for me the task remains the same, and no one shall take that away from me, not even Truus. It is obvious that we need support and help from professional health care workers but under our direction. We will have to tap into another dispositif or mode of ordering: palliative care.

This dispositif emerged with the hospice movement in the 1960s outside of or in the margins of mainstream health care. However, through a process of professionalization in palliative medicine and palliative care in the 1990s, it moved into and got entangled with advanced specialist care for cancer patients in hospital settings (Clark, 2007). In Norway, the majority of palliative medicine and palliative care facilities are hospital based. Some are headed by oncologists, others by anesthesiologists. An increasing number of nursing homes established palliative beds as part of their community health services. Palliative Home Care Services, however, have not yet been developed on a larger scale (Strømskag, 2012). As a dispositif, palliative care is not yet as strong and disciplining as oncology, providing more leeway for locally optimizing solutions.

We establish contact with my general practitioner, with the palliative team at the local hospital, and with the palliative care coordinator of the municipal community health services. In them, we meet a medical dispositif that is radically different from oncology, one characterized by a different logic. One that accepts that Truus is about to die and that respects her decision not to pursue aggressive treatment. One that says, “You decide! How can we help?”

The fact that Truus still has a Norwegian social security number from the time she worked in Norway in the 1970s, a number that can be entered in the appropriate boxes on a range of forms, makes it easier to register her, a foreigner, as a new patient and slide smoothly into administrative systems. Truus decides to stay in Norway, with me, and die here. She chose me in 1977, when we married in Narvik. Now she chooses me again, in this crucial phase of our lives. Helene and her partner Ramzi visit and spend just over a week with us at the end of July. Toward the end of my summer holidays, our Dutch mantle care providers travel to us in Narvik. In August and September, Liesbeth, Wietze, and Marjan assure, in a planned and orderly fashion, that I always have two people at home to support us. With Joke’s visit, all sisters and her brother spend a couple of days with us, together for the last time.

For me, autonomy is a relational effect or consequence that must be produced every day in a network of relationships with our surroundings, in a collective. As the body erodes as a result of disease, the network has to be reconfigured, and the distribution of work in the collective has to be reordered. As Truus grows weaker, I am more and more involved in the performance of her autonomy. In new and unexpected ways, I become a part of her. It is now that it matters, for real. I have to establish and organize a care collective that will allow her to die in a way that is appropriate for her and the life that she has lived, and that allows me, our daughter Helene, and next-of-kin to care for her.

In Norway, the legal competence to make end-of-life decisions is attributed to physicians, because these types of decisions build on professional medical judgments that require medical competence, this time in the sense of expertise. Partners and next-of-kin have a right to be heard. However, in a strict interpretation of the law, I am disqualified as a decision maker with regard to decisions around my wife’s end of life, despite the fact that I have been married to her for 35 years, or perhaps it is because of that? Next-of-kin shall not have to take end-of-life decisions concerning their loved ones. Physicians can take these decisions in a professionally responsible way, based on objective medical judgment. The two polysemic meanings of competence, that is, competence as knowledge/expertise and competence as legal capacity and authority to decide, are here glued together.

Truus challenged the competence of the professor–physician in the Netherlands with regard to his judgment about what would be the advisable treatment regime. Therewith, she also denied him the competence to make end-of-life decisions on her behalf. I feel the anger in my body just imagining a treatment-tenacious physician taking over the direction of my wife’s last phase of her life and over her death. A medical judgment cannot guarantee that the chosen medical course of action is in accordance with the patient’s judgment, not even when this professional judgment is tested by a second professional opinion. The medical judgment itself is subject to infinite regress. Who judges the judge? In practice, professionals have to find ways to resolve or avoid the infinite regress. The Netherlands, for example, has institutionalized the second opinion with regard to requests for euthanasia in the figure of the Support and Consultation in cases of Euthanasia in the Netherlands (SCEN)-physician. In a short paper that Truus asks me to read, Bert Keizer (2011) states that he overheard a SCEN-physician make the following remark: “When I myself need a consultation, I will first look at who is on call!” Through her choices and actions, Truus effectively reclaimed the competence of making end-of-life decisions from medical professionals.

There is a territorial dimension to dying at home. Territoriality requires, according to Sack (1986, pp. 21–22), the categorization of an area, the communication of a boundary, and some form of enforcement of control over access to the area and over things within it. At home, we are better positioned to retain direction over the manner of Truus’s death than in a hospital—better conditions for me to care for her, to do the things that I want to do for the woman who has spent 35 years of her life on me, who has irritated me, challenged me, and allowed me space to develop and grow.

Gentleness and the Enactment of a Relationship of Care

As time and disease progress, we need assistive technologies. A wheel chair, for one! I order a toilet chair too early, and we have to park it out of her line of sight. A male janitor and fireman haul and put in place a reclining chair with servomotors and distance control. Female nurses carry in and assemble a heavy hospital bed. The bed makes it easier for Truus to get in and out of bed, its three movable segments making it easier to find a comfortable position. However, being a single bed, it prevents me from sharing her bed any longer. It displaces me to a makeshift bed in the living room. Evenings and nights, the bedroom is where Truus can prevent her unrest from disturbing the rest of us, allowing us to talk in the living room. At night, I hear her shuffling past me on her way to the toilet, and a couple of minutes later back again, taking care not to wake me. Sometimes I do not disclose that I am awake, ready to respond in case she stumbles or falls.

At some point, we need and are assigned home care, twice a day. When they come to help Truus, I try to give them space to work. But in one instance, Truus does not allow me to leave the room. I try to stay in the background, nonetheless, and have a unique opportunity to observe, like the proverbial fly on the wall, home care nurses at work. What I see impresses me deeply. I am at a loss for words, but groping for some: touching, embodiment, patience, closeness, situatedness. Performed with calm and smooth movements, it looks like a dance. One word sticks in my mind: gentleness. I want to write about this but do not yet know how. Reading about touching in its various material, embodied and emotional meanings might be a good place to start (Classen, 2005; Paterson, 2007; Paterson & Dodge, 2012). Or perhaps Charis Cussins’s notion of choreography as the space–time set of practices that shape but do not determine the actions of the bodies of the dancers (Cussins, 1998). Like the young female physician in training at the oncological center, these home care nurses perform a relationship of care, exemplifying, to use Frank’s (2004) words,

how care can be enacted in gestures that can console far beyond what they accomplish as practical components of treatment. For touch to console . . . it must be more than efficient. Touch must be generous, seeking contact with a person as much as it seeks to effect some task. (p. 6)

I witness top of the notch nursing. When they are finished, they thank me for allowing them into our home!

Entering the Terminal Phase

Once every few weeks, it is necessary to go to the local hospital to drain the ascites accumulating in Truus’s abdomen. As Truus grows weaker, the burden of traveling to the hospital and of the procedure itself increases. The third and fourth time, Truus stays overnight in the hospital to rest and get some fluids. I pick her up again the next day. Providing high quality palliative treatment to Truus, but me fumbling for the right grip to adjust her bed, I feel how the hospital turns me into a visitor in unfamiliar surroundings, reducing my ability to take care of her. Without having to ask for it, after the fifth and last visit to the hospital, the palliative care nurse offers and arranges for Truus to travel home by ambulance. Pain is properly managed with transdermal fentanyl patches. We apply pressure bandages for the edema in her legs, but they never stay on long. A couple of days after coming home, we notice that her fluid intake decreases and then ceases, indicating the transition into a new and final terminal phase.

I call our daughter Helene and Karin, a good friend of Truus, to move forward their already planned flights from the Netherlands to Narvik. “Is it time for the palliative sedation we talked about?” I ask. “Not yet!,” Truus replies. But she allows me to start making preparations for it. Sedation is a pharmacological procedure that aims to reduce the patient’s level of consciousness.

I make a phone call to the local hospital’s palliative team and talk to the anesthesiologist. He prepares an infusion pump with a mixture of morphine and midazolam, an anxiety-reducing, sleep-inducing, and consciousness-reducing drug in the benzodiazepine group. Home care nurses deliver the infusion pump to our home the same afternoon. The pump is programmed in advance at the hospital. Infusion speed is pre-programmed and locked. The infusion pump has a bolus button that, when pressed, delivers a larger fixed dose on demand. Use of this bolus button is also pre-programmed and locked to 4 times per hour. With the infusion pump follows a form explaining the pharmacological treatment regime and a letter from the anesthesiologist in which he makes himself available on his private mobile phone 24 hours a day. The infusion pump’s user manual is also available. I have no intention of doing something on my own, but I like to have the opportunity to adjust the infusion speed and dose myself, if necessary.

Truus does not want to start the infusion immediately. She waits for Helene and for her friend Karin, who arrive the same day, early in the evening. They talk several hours during the evening. Then exhaustion takes over, and Truus indicates that now the time has come. I insert the butterfly myself, a small, winged needle for subcutaneous, under-the-skin infusion. We say farewell to Truus for the last time. It is okay. Then I push the Start button. ³

Professional Guidelines for Palliative Sedation to Dying People

In 2001, the Norwegian Medical Association’s Council for Medical Ethics published professional guidelines for the use of palliative sedation to dying people (DNL, 2001; Materstvedt & Førde, 2009; Materstvedt, Førde, Kaasa, & Borchgrevink, 2008). In the Netherlands, in 2005, the Royal Dutch Medical Association published similar professional guidelines for palliative sedation (Wijlick, Legemaate, Verkerk, & de Graeff, 2005). The Dutch guidelines were revised in 2009 (KNMG, 2009).

The logic in the Norwegian guidelines can be summarized in five points: (a) Palliative sedation shall only be used as a last resort, in cases with short expected lifetime and intractable suffering that cannot be relieved in any other way. (b) This requires access to expertise in multiple areas, which among others evaluates the patient’s psychological condition (depression?) and competence to consent. (c) The proportionality principle applies. To ask a physician to collaborate in the long-term or permanent reduction of a patient’s consciousness, and therewith life experience, is of such significance that this can only be requested in cases where the patient’s suffering is of equal magnitude. (d) Nothing the physician does or does not do shall shorten the patient’s life. (e) Everything has to be done to ensure that, in the end, the underlying incurable disease stands out as the cause of death.

Truus asks whether these guidelines are “based on dying people’s needs and conditions or on the medical establishment’s need to protect its own ethical integrity and right to conscience and stay at arm’s length from any suspicion of collaborating in active or slow euthanasia.” Truus has read a paper by Jan Meulenbelt (2011) in the March 11 issue of the Dutch medical journal Medisch Contact about the Dutch law on euthanasia. She marked the following passage: ”That this should be a law for patients is a myth. It is first of all a law for doctors . . . ?” Truus has not been able to read Albert Heringa’s contribution to the debate. However, during her last months, she has lived and regularly expressed her affirmative support to its key message: “death does not belong to the doctor” (Heringa, 2011). “This one death that I must die is mine!” Truus says.

Through professional guidelines and technology, even the palliative care dispositif of the medical profession tries to maintain control over the process of dying. That is why access to the infusion pump—designed to be used in home care situations—is digitally locked with a PIN code. This ensures proper drug dosages, but it also ensures that pain treatment with morphine at home cannot be abused by the patient or next-of-kin to commit euthanasia. Potentially, lethal drugs shall not be left at the disposal of patients, their partners, or next-of-kin.

Like an Orca Below the Surface of the Water

In a palliative ward in a larger hospital, the question whether palliative sedation shortens the patient’s life or not might have been an important issue of ethical deliberation, confining its use to patients with refractory symptoms and intolerable suffering. In the logic of our home care collective, this question about the possibility of shortening the patient’s life is a non-issue. Collectively, we have decided and accepted that it is time to let go. Of course, the question of possible life-shortening effects can be asked, but it would not make sense. It belongs to a different dialect, of a different valley with a different logic.

After inserting the butterfly and pressing Start, we press the bolus button a couple times during the first hour or so. After a while, Truus slides into a slumber sleep, like an orca swimming just below the surface of the water, breaching it from time to time to breathe. ⁴ I must admit that I probably would have sedated her deeper if access to the infusion pump had been free. Now I am glad that the anesthesiologist’s experience, embedded in the pre-programmed pump, directed this part of the treatment.

Truus breaches the surface a couple of times in the course of the night, just, without waking up completely, but enough to have some contact with her, not verbally but bodily. At one such occasion, with Helene on one side and me on the other, Truus reaches out and puts her arms around our necks. With the little strength she has left, she hugs a last farewell. Caregivers are not the only ones to enact relationships of care! Dying patients do too!

Helene does not leave her side. In a face-to-face meeting between the “generations that are dead and the generations that will be” (Bremnes, 1993), she, who is midwife, moistens her dying mother’s lips, massages her gums, and gently puts on a little face cream. She lies down next to Truus, as good or bad as possible, with her head on her mother’s pillow and her hips on a stool. From time to time, we press the bolus button, guided by motor unrest.

Around 8 o’clock in the morning, Truus breaches the surface again and wants to sit on the side of the bed. It is her birthday. She fills 67 years. I get the Norwegian birthday cake that she herself bought on her last shopping trip into town. Together with Wietze, Liesbeth, Karin, and Helene, we have a small birthday party. This is an unexpected but welcome bonus.

After about half an hour, we lay her down to rest again. She is asleep when the home care nurses come. There is nothing for them to do. Truus sleeps for 3 hours, breathing regularly. Then her breathing shifts into the more laborious Cheyne–Stokes type of respiration with recurrent breathing stops. This stage lasts for 3½ hours. At half past four that afternoon, Truus dies, on her birthday, 17 hours into the subcutaneous infusion, somewhat less than 3 months after the diagnosis was established.

Care for Those Who Must Live On

We take an hour for ourselves with Truus. Then I call the general practitioner who will pronounce death and issue the death certificate. I call the funeral agency that will come and prepare her body for transportation to the Netherlands. As Helene participates in the practical post-mortem care of Truus’s body, I call nurses and physicians who have been involved in the palliative care for Truus and thank them for their help.

I am convinced that Truus has made the right choices. I am impressed by the courageous way in which she did it, dying. I am proud that we succeeded in allowing her to die at home. I am deeply grateful for the excellent professional palliative care and for the equally excellent informal mantle care that helped her to die in the way she wanted. I am still grieving and miss her, but I can continue because I have been able to be part of her in this process and could do all that I did for her. My memories are imbued with strength and integrity, not with suffering and weakness.

“Have you accepted that I must die?” was the question that a young dying woman with cancer put to her personal counselor (Sporken, 1981). Truus put this question to me. I answered affirmative, in the sense that I was prepared to let her go. Did I, did we, never doubt? Of course we did. The situation would have been very different for us had the diagnosis been established much earlier. To accept the inevitability of impending death is a decision that must be remade every day, again and again. The door to life-prolonging treatment in a hospital is always ajar. It can be tempting to accept that offer, and transfer responsibility and direction to somebody else, to the professionals.

I asked Truus repeatedly whether she would have made the same decision, to reject aggressive treatment of the ovarian cancer, if I had been living and working in the Netherlands. Did she through her decision solve my precarious and awkward problem of how to be with her, me working in Norway and she undergoing treatment in the Netherlands, perhaps for several years? Truus confirmed every time that she would have made the same decision.

I would not have traded the 3 months we spent together for 1 or 2 years with chemotherapy, extensive operations, and frequent and long hospital admissions. I could not have subjected the woman I love, with whom I shared 35 years of my life and who is still with me while I sit and write about her death, to iatrogenic suffering on my behalf—iatrogenic because unnecessary suffering arises when treatment-tenacious physicians omit to discuss a palliative trajectory with their patients. Iatrogenic suffering also arises when a profession requires too much suffering for a patient to meet the criteria for the medical indication for palliative sedation. In the Netherlands and in Norway, some voices say that patients cannot choose palliative sedation. It is not for them to choose. However, there are physicians and nurses on call who are willing to provide their care while allowing the patient and his or her partner to retain the power of direction. Professional guidelines are not descriptions of what happens in practice, neither do they determine practice throughout. Practice is always underdetermined by rules, regulations, and guidelines. In practice, the indication for palliative sedation is not always restricted to refractory, intractable symptoms (Blanker, Mischa, & van der Velden, 2006). Sometimes it is also provided in the absence of unbearable suffering. Or materially, the same procedure is done on other indications, with the same effects, but not called palliative sedation. There is room, professional discretionary space, for finding appropriate local solutions. This requires that we as next-of-kin are willing to face death again, at home, and take part in the competence of dying.

“I am not afraid to die,” Truus says on several occasions in conversations with visitors, “but I am concerned about how he will fare after I am gone,” nodding toward me. She genuinely chose a palliative trajectory for herself. Simultaneously, it was as if she recognized—knew, accepted, and affirmed—that the manner of her leaving this life would determine her family’s ability to survive her death. ⁵ Truus joined the question, “Have you accepted that I must die?” with the question “What can I do to make it easier for you to survive my death?” We managed to establish a care collective at home, going in for a soft landing, knowing that one of us had to die and the others must live on.

End of Journey, Going Home

During our first visit to the graveyard, while trying to decide on an appropriate site for her grave, I ask Truus what mark, what kind of symbol, she would like us to engrave on her stone, to document with a mark on a thing both the life she has lived and the way she died. “A circle with a dot at its center,” she replies. It is the symbol that scouts use when marking a trail for others to follow. The circle with the dot at its center is always the last one. It marks the end of the trail, the end of the journey. Truus formulates it somewhat differently, however. The mark signifies that the one who has marked the trail has gone home.

Truus spends her last weeks and months with me in Norway. Her choosing to die in the place where I live has not tainted but reinforced it as my home. But she chooses a graveyard in the Netherlands as her final resting place. Of her own money, she buys burial rights for four: for herself, for me, for our daughter, and her husband. Time will tell whether that will be my final destination too, or not. Her grave is located at the northern boundary of a region that she worked intensively as a general practitioner. More importantly, however, it is the region where various institutions for the mentally handicapped are located, now part of one organization that employed her as physician. Although formal registration as an Arts voor Verstandelijk Gehandicapten (AVG)—a physician specialized in the care for the mentally handicapped—was denied to her on bureaucratic grounds, this is the population with whom she worked and cared for over many years. They are her people. No matter where we are and see or meet people with Down’s syndrome or similar conditions, she nudges me at my elbow and whispers, with love in her eyes, “Look, they are of my people!” I call her “my wife” always with reluctance. I do not possess her, never did. Now I recognize that I have always shared her with them. They are at least part of the home to which she returned.

Leafing through some of her old notebooks from her younger days, in which she jotted down phrases that apparently touched her, we find one that says, “Not only the way you walked, but also the trail that you left behind is important” (source unknown). The circle with the dot at its center is Truus’s last imprint in this world that both marks the end of her journey as a physical human being and as the beginning of the trail that she left behind for us to reflect on and follow—that is, if we would choose to do so. Here ends the story that started with an ending. It is my narrative of how Truus died, a story that I can live on with. I offer it to you as a story, to use Frank’s (2004, 2010) phrase, to think with.

Truus has gone home. Her body we entrust to the Earth. She lives on in our hearts, our words and in our deeds.