Three stories illustrate different aspects of the temporal challenges commonly faced by older persons who arrive in the American clinic. The stories exemplify the kinds of futures that become ‘present’ in the form of decision-making imperatives, and they show that the risks and timing of death, pain and suffering must be considered though they cannot be pinned down. Those risks must be weighed against the potentiality, but not certainty, of longer life. The imminence of death is confronted via probabilities. The varied embodiments – of worsening health or better health or death – must be imagined because there are options. And, control over time left through technological choice is the patient’s (or the family’s) responsibility. These challenges – in which self-knowledge, risk assessment and the confrontation with mortality merge – are ordinary accompaniments to preventive and life-extending medical interventions for older persons in the US today. The scenarios below can happen at any age in adulthood. The point I wish to emphasise is that these scenarios become more common, indeed, have become ordinary, in an ageing society. Reflexive longevity becomes the way we live.
Together, these stories reveal the modes of knowing and reasoning that are made possible, indeed, are emphasised, for older persons by technologies of the clinic. The clinic demands from seriously ill patients a sense of lived knowing through the imagination of an embodied condition (i.e. the effects of life-prolonging treatment, the natural course of disease, dying) that is not (yet) real. For older persons that practice of calculating time left– in relation to age, risk of death, and the unknown outcomes of procedures – structures decision making and meaning. That practice constitutes reflexive longevity.
Mr. A: technology organises the apprehension of risk
Mr. A, aged 86, was not feeling well following a bout of pneumonia. He asked his daughter to take him to the local hospital and he was ‘shipped’ to this hospital from there. Mr. A has congestive heart failure and recently suffered a heart attack. At his bedside, the cardiologist emphasises that he ‘does not have to make a decision today’ regarding what to do after the cardiac catheterisation diagnostic procedure4 he is about to undergo. The doctor does not want to rush the patient into making treatment decisions.
When catheterisation laboratories came into being about 25 years ago their single purpose was diagnostic angiograms. Proportionally fewer patients had the procedure. The only treatments for cardiac disease were medications and coronary bypass operations. Today, cath lab procedures are curative and preventive as well as diagnostic – balloons and stents routinely open up clogged coronary arteries, enabling patients to breathe more easily and live longer. Four times as many patients have procedures now compared with two decades ago, and the patients are older, often in their eighties and early nineties, with multiple health problems in addition to cardiac disease. The cardiologist I am following will do four to six procedures this day. The hospital she works in will do more than 3,000 cardiac catheterisation procedures in 2008. Approximately 10 per cent of the patients here are aged 90 and older.
Mr. A is wheeled on a gurney into the cath lab and I watch the procedure from behind a window in a lead-shielded ‘control’ room where technicians monitor the patient and the procedure. The patient is lying on his back and he can turn his head to watch a big screen at his side. The doctor takes pictures – still and moving – throughout the procedure which are displayed there. The patient’s beating heart and coronary arteries are clearly visible on the screen, larger than life, in black and white, as is the placement and movement of the catheter. The patient and the rest of us can view his own constricted arteries and muse, along with the doctor, about how to interpret the facts of his body and his disease. The medical truths of the body have never been more prominently displayed, more ‘in your face’, than here.5
Forty-five minutes after the procedure begins, the doctor says to Mr. A, ‘There is a tight narrowing in the left main coronary artery due to plaque. It is very dangerous. The right artery is also completely blocked – it is not supplying any blood to the heart. This is a dangerous matter. Typically, bypass surgery is considered the safest. But, technically, we could use stents [placed by a catheter] to open the arteries. But if there is a problem it could be fatal; it is high risk for both procedures. You can think about it. If we’re going to treat it, we should do something before you leave the hospital. Unless, philosophically, you want to let nature take its course. And then we can treat it with medications’.
Mr. A responds, as do so many patients who are faced with choices that are frightening, possibly life-threatening and nearly impossible to make, ‘What would you advise?’ The doctor says it is hard to know what to advise in this case. Bypass surgery is, theoretically, the safest. But the stent procedure has a lower morbidity than open heart surgery. In the stent procedure blood flow in one major artery would be clamped for a few seconds. Since the other major artery is also completely blocked, Mr. A could die in those few seconds without blood flow to and through the heart.
The doctor continues. The surgeons will not want to do bypass surgery; it is major surgery. It requires general anesthesia. The patient has had pneumonia for two weeks, so he is not in great condition for major surgery. Mr. A could decide to opt out of any procedure. In that case medications, such as nitroglycerin, are palliative. They can help leave the arteries open a little bit, for a short time. ‘But if he goes home and has the big one, that’s it’.
Knowing these details creates the need to anticipate, think about, and decide certain matters, to consider life in corporeal terms and to imagine how things might proceed – both to better health and to death. Mr. A simply didn’t feel well. He had a cough, pneumonia. He had asked to be taken to the hospital. The diagnostic workup there led to the cath lab procedure here. And that procedure produced the knowledge – experiential for the patient, clinical and ordinary for the medical team – of being between a rock and a hard place. Decisions must be made.
The option of no decision is not allowed in this case, because standard hospital procedure, indeed, good medicine, creates an awareness, a list of risks which must be acknowledged, and provides an array of interventions that must be decided among – by physicians and patients alike. The problem in this case is that all options seem equally risky. A hierarchy of risk is not apparent. Yet paradoxically Mr. A cannot go home without articulating a desire for one thing over another. That is how ‘patient autonomy’, ‘informed consent’ and ‘ethical practice’ operate today. The clinic sets up a deliberative process and Mr. A must engage it (or someone must do it in his stead). He must apprehend the likely or possible scenarios of his life-time future. If he does choose to go home without having anything else done in the hospital, it will be, can only be, with the knowledge that it was a decision on his part – to take his chances about the relative nearness of a fatal heart attack. It would also be with the knowledge that the other two procedures (bypass surgery or stents placed via catheter) could bring about immediate death or could, instead, relieve his condition and stave off death.
The dark side of patient autonomy is revealed here. The doctor wants the patient to know which medical interventions are possible and available. That is, she guides Mr. A to consider the risks of death and the risks of life-extension and then to voice an opinion. The following day, Mr. A rejects the surgical bypass operation. Three days later Mr. A elects medical management only and is discharged from the hospital.
The tools of the clinic provide, simultaneously, bodily knowledge, risk awareness and the imperative of ‘choice’. Mr. A’s ‘choice’ which is not a choice depends on a lived knowledge of his bodily condition together with an appreciation for the unknowns about the offered interventions. He is asked to imagine death, which of course is impossible to do, and also to imagine longer life, which in his case, involves life-threatening risk, regardless. The clinic demands this particular imaginative process, and it sets up this choice as a (potential) means for controlling the timing of death. At the same time, the doctors acknowledge that they cannot know, in advance, the outcome of whatever he chooses; they cannot control that timing. Yet, paradoxically, the clinic asks the patient to attempt that control. This kind of impossible choice, which demands reflexive engagement with control over time left, is becoming more ordinary in late life.
Mrs. B: The naturalness of controlling time left
Following several years of worsening symptoms, Mrs. B, aged 75, was referred to a gynecological surgeon and diagnosed with ovarian cancer. That physician discussed with Mrs. B and her husband the possibilities of both surgery and chemotherapy and Mrs. B decided to proceed with surgery. Mr. B recalls, ‘My wife felt that the operation was the way she wanted to go. If the tumour could be removed, it should be removed. She wanted to treat it aggressively.’
Immediately after the surgery Mrs. B and her family learned that the cancer had spread to other organs and was inoperable. Mrs. B died six weeks later. A week following her death, her husband and daughter reflected on that six-week period in an interview. Their story recalls the way in which the divergent, fraught and now ordinary scenarios of hospice care and aggressive treatment emerged, scenarios that, on the one hand, acknowledge the outer limits of therapeutics and thus death’s inevitability (though not knowing when it will occur) and, on the other hand, seek the continuing pursuit of interventions that can potentially ‘add’ to the future. The story exposes a remembered sensibility about how the clinic shapes consideration of time left.
Mrs. B’s husband and daughter reported that, right after the surgery, the surgeon discussed with them both chemotherapy and hospice care. The doctor had made it very clear to the patient and family that the medical team could not cure her. He had brought up the topic of hospice care right away, yet then he pulled back, the family said, and, at the end of the conversation, he began to talk about chemotherapy. Mrs. B’s husband and daughter remember Mrs. B being offered ‘two options’ by the surgeon. She could consider hospice care, which she did, thinking, ‘I’ve had a good life. I’ve done a lot of things. This is it’. Or, she could try chemotherapy. They recall the surgeon telling them, ‘You can always just try it out, see if anything happens. We should have some response by the third or fourth treatment.’ Both the husband and daughter stressed that the surgeon made it very clear that he was making no promises – Mrs. B could spend the last year of her life in chemotherapy treatments.
Many cancers have become chronic illnesses today, manageable well into late life (though not curable) because of better treatments, including surgery, chemotherapy infusions, oral medications and radiation. These treatments have become a normal part of living for many (Brody 2008), and not only in the US. In addition to augmenting time ‘naturally’ through standard or new treatments, the clinic also often makes a dual offering – aggressive, potentially life-prolonging treatment and palliative care that anticipates the end of life. Without medical guidelines or regular, explicit discussions between doctors and patients about the end of life or toxicity of treatments, patients have no basis on which to make decisions, that is, whether to acknowledge and accept the nearness of death or aggressively fight the natural course of the disease, for an undetermined amount of time, in the attempt to stave off death. Recent medical literature reveals an emergent concern about the growing numbers of patients who receive aggressive chemotherapy treatments up to days and weeks before death (Earle et al. 2004, Matsuyama et al. 2006), though the practice itself has been in existence a long time.
When patients are over 70 or so that dual offering is ethically and practically complicated by the fact that more of life is behind than is ahead, and that the future, despite interventions, may be only days or weeks. Yet, as medicine extends lives routinely, death in the seventies, eighties or even early nineties appears no longer acceptable, usual, indeed ‘natural’, to a large segment of society. That cultural phenomenon is born out in recent studies showing that many patients proactively choose aggressive, toxic and costly treatments up to the time of death (Harrington and Smith 2008, Matsuyama et al. 2006) instead of hospice care.
To complicate matters, the idea of ‘palliative chemotherapy’ (Harrington and Smith 2008) is not well understood by patients and families, and physicians do not necessarily take the time to explain that it is not curative. The goal is to provide better quality of life, for a time, until death from the disease occurs. There was no question for any of the doctors involved in the care of Mrs. B that she would die of her disease. The family, on the other hand, hoped for ‘remission’ that would add time to life.
Mrs. B’s first and only chemotherapy infusion took place while she was still hospitalised. Extremely debilitated, she was discharged to a rehabilitation facility for post-operative care where she decided that she wanted to move forward with more chemotherapy. Two and a half weeks later Mrs. B came to the clinic with her husband and daughter to assess her condition for proceeding with a second chemo treatment. Weak from the cancer, the surgery and the first chemotherapy session, Mrs. B was at a ‘crossroads’ moment, which, importantly, no health professional explicitly discussed with her.
At the clinic, Mrs. B and her family aired their first ambivalence about whether to continue treating her cancer aggressively. Her husband said that now, following the first chemo infusion, ‘we don’t know if we’d do the same thing’. Mrs. B said, ‘I’m not sure. I was under the impression that I should do the chemo, but I don’t think I want it. I’m thinking about hospice’.
Her daughter, clearly advocating additional chemotherapy, remarked, ‘You’re okay, considering it’s only been a couple of weeks since the chemo’. Her husband retreated from his ambivalent position and wanted her to move forward with treatment. The physician said, ‘We can delay it a week. It’s appropriate to continue with one more treatment, and then see what happens... Our recommendation is to do it, because the majority of people respond’. By the time Mrs. B and her family left the clinic they all felt strongly that she should and would continue treatment.
But two weeks later, Mrs. B’s husband called the clinic to report that they cancelled Mrs. B’s chemotherapy appointment. She was now home with hospice care. The daughter said, ‘At the most it was going to be a year, and when she thought about it, when she thought about what she and we had already been through, my mother decided that she really wanted to be home. I was angry that that she didn’t want to continue on with chemotherapy. She was utterly exhausted that day at the clinic. It was only later that she said she didn’t want to go through the rigours of going back and forth for chemotherapy. Once she was convinced that nothing was going to improve, she made the decision that she wanted to give up the treatment and come home’. Mrs. B’s husband added, ‘She was very weak. She had been prepared to take the chemo, to see if it would do any good, if it would prolong her life and reduce her pain. But neither happened. She decided to elect hospice. I was pretty upset about her decision. But the decision was hers. I accepted whatever she wanted’.
Mrs. B died at home a month later. Her husband mused, ‘Would it have added anything to my wife’s life, if she had the chemo? I don’t know. I have no idea. The chemo might have killed her’.
Because there are treatment options, augmenting time left seems always to be a possibility and is thus impossible to ignore. No one could guarantee how much time left, if any, would have been added to Mrs. B’s life if she had continued treatment, yet she and her family were guided to dwell within that hope during the clinic visit. After a period of ambivalence, in which she had to weigh the value of time ‘added’ but through the adverse effects of more treatment, Mrs. B acknowledged that any ‘added’ time might not result in ‘good’ time and thus time left did not seem worth extending. She chose, or rather yielded to, hospice care. After her death her husband remained ambivalent. The fact that medicine can so routinely attempt to augment time left promotes an open-ended and uneasy feeling about the endpoint of one’s decisions – could I have added time (for myself, my family member) if I (or she) made another choice? Even when augmenting time left consists of adding weeks or months only, with uncertain ‘quality of life’ as in this case, the disquiet about the lost possibility of proactively lengthening the future – a particular fantasy about time – remains salient for this family, as it does for many. Although ultimately, time itself did not trump ‘quality of life’ as a value for Mrs. B, it did so for her family as it does for many, which is why so many ‘choose’ aggressive therapies even close to death (Kaufman 2005, Matsuyama and Reddy et al. 2006). The dual offering of aggressive versus palliative care sets up potentially long-term anguish for family members, regardless of the ‘choice’ patients and families make, in part because controlling time left is perceived as a ‘natural’ act. The unwillingness to attempt to do so can seem like a failure and can remain unsettling for survivors.
Mr. C: Self-bargaining: linking the value of life to age and time left
Mr. C, aged 78, has liver cancer which he and his physicians are monitoring with vigilance by periodic blood tests and scans. He has had two rounds of chemotherapy infusion treatments directly into the liver in the past year to shrink the tumours while he waits for his name to rise to the top of the national waiting list for a liver transplant. Mr. C has been seeing one liver specialist for a decade. When that specialist began to talk about transplant as his ‘best option’ Mr. C was enthusiastic.
His daughter accompanies him on every clinic visit. She will support any decision he makes. His wife, also present, does not want him to have a transplant because she fears for his life in surgery. In the exam room, the physician reviews the most recent CT scans and remarks that there is a new cancer tumour, in a new location. The doctor comments, ‘One of the tumours has grown a little in size. We’re going to have to go again and repeat the chemo procedure. This is telling us that you have a liver that is prone to making tumours. And this tells us that a transplant is the best way to manage your cancer. These treatments can’t control it.’
The physician continues, ‘You could get an offer for a transplant in a couple of months. You should have the treatment in the next couple of weeks.’ The daughter asks how the cancer is treated if her father does not have a transplant. The doctor replies, ‘One of the risks is that the cancer can get ahead of us, and then the pace speeds up, and we can’t control it and we can’t predict how it will behave’.
He shifts the topic to speak about age and risk. ‘When we started with liver transplant, we didn’t have any patients over 55, then 60. Now, there is no limit. But the older you are, the greater the risk. They have to clamp the largest vein in your body for 45 minutes. And that puts a stress on your heart. So, we want to do more tests, to see if you can withstand the surgery. If others on the team think he’s a good candidate for a transplant, he should have one, and the sooner, the better...The fact that they treated the tumour a couple of months ago and didn’t knock it out – that edges me over toward a transplant. In my experience you’d do well with a transplant’.
Another doctor comes in to discuss the different types of ‘high-risk’ cadaveric livers that patients may ‘choose’ among. There is a ‘high-risk donor form’ to fill out. There are ‘in-between’ livers from persons with Hepatitis B or C; from patients who died a ‘cardiac’ rather than ‘brain’ death; from older donors. ‘In order to use as many livers as possible, we use some of those in-between livers. They might not look good, but they might work well. We use our judgment. But the surgeon will give you the option – they will call you about these less-than-perfect livers and you can decide if you want it’. He adds that when you get a call that a liver has been found, the surgeon does not bargain with you. You have 15 minutes to decide.
Mr. C comments, ‘I’ve lived a good life to age 78. Now I leave it to the doctor’. The doctor replies, ‘We won’t offer you a liver that isn’t good. You have to trust the surgeons. The science isn’t perfect. The surgeon judges the context of the donor liver and your age and everything, and decides if the liver is good for you’.
When the doctor leaves the exam room Mr. C reflects on the discussion. ‘Maybe I should wait for a perfect, healthy liver. I want to wait. If I get a healthy liver, and it gives me five years, that’s okay. If I live five years. My father died at 77. If I live to 82, that’s good. If I had stayed in [another country], I wouldn’t live this long. The medicines here have helped me live longer’.
Mr. C’s daughter notes, ‘You have two things going against you if you wait for a ‘healthy’ liver. First, the cancer will grow, and second, you’ll be older. If you turn down the first offer you get, and then need another infusion treatment, before they offer you a ‘healthy’ liver, what would that be like? Healthy liver offers are more infrequent’.
Mr. C muses, ‘To live past age 80 would be good’. After a few seconds of reflection he changes his mind and says, ‘If I could get two added years with a non-perfect liver, living to age 80, that would be okay’.
How much potential additional time is worth the risks of surgery? Mr. C answers rhetorically, five years, but then he quickly reconsiders and says that two years of life, from a donor liver, would be enough for him. Both his range (two to five years) and his recalibration (from five to two) are not unusual for older persons considering major interventions, whether in transplant, cancer, or cardiac therapy. It seems that in their self-negotiations, older persons who seriously consider life-extending treatments confront all at once: the limits of medicine yet the fact that life-extending interventions are normal and occur successfully every day; that even a relatively short future is worth the pain and risk of death involved in major interventions; and that time left is a mandatory variable in calculations about risk, worth, and the best thing to do.
When the physician re-enters the room the daughter has questions. Can one have as long a life with a ‘high-risk’ liver, as with a ‘perfect’ liver? The doctor replies that generally, the longevity with a high-risk liver is as good as that from a perfect liver. But there are more technical problems, up front, that need to be taken care of. Does he only get one shot, because of his age? ‘It depends. If he gets a bad organ, and it’s technical, he’d get another organ. If things go wrong later he’d probably not get another organ’. What about cancer again, from his own or from a high-risk donor who had cancer? The doctor notes that one can have a recurrence of the cancer in the liver. ‘Even though this is the best treatment, we can’t guarantee that he won’t get a recurrence. But it’s only a 10 per cent or 20 per cent chance of recurrence. If we don’t do a transplant, we know his cancer will progress. The transplant is mostly curative, and we hope the cancer won’t come back’. What if the tumours get bigger? ‘We can’t do a transplant if the tumours are bigger than five centimeters. Right now they are smaller and we can control it’.
Two weeks after that clinic visit Mr. C had another chemotherapy infusion to reduce the size of the tumours. Four weeks later he had a successful liver transplant. He never filled out the ‘high-risk’ donor form. He does not know what kind of liver he received vis a vis that form.
Mr. C confronts risk by negotiating with himself how much time left is important to him. He calculates time left– and wanted time left– in terms of age. He negotiates with himself about the value of life in relation to the amount of future he thinks would be acceptable, given his current age, his growing cancer, the risks of surgery, and the age of his father at death (a very common comparative point). He ponders and then decides quickly that the risks of transplant surgery would be worth it if he gains even two ‘additional’ years of life. The socio-economic structure of American healthcare delivery, together with the medical emphasis on individual choice, supports his calculation.