(…) our most cruel failure on how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; (…) A. Gawande1
We all recognize that the purpose of medicine is helping the patient, but what do we actually understand by helping the patient? This is a very tricky question that should always be answered from the point of view of each patient; however, a patient is never an isolated entity but a member of a family, a society, and a culture. In each case there are multiple factors that come into play. Therefore, besides the pressure or stress (both physically and psychologically) that a disease itself may be imprinting onto the patient, especially while dealing with a terminal illness, other environmental factors (family members, friends, healthcare providers, etc.) also play important roles in the quality of the delivery of care.
Idle, browsing bookstore shelves, a title caught my attention: “Wrong Medicine.” Is there such a thing as wrong medicine? I recall finding myself pondering. The title called me, and the subtitle provided me with a hint to its contents: an ethical and philosophical discussion about when certain treatments should be considered as medically futile, and what this consideration implies for the patient. I found that these discussions could be well complemented by some ideas exposed in Atul Gawande’s most recent book: “Being Mortal.”
The Oxford English Dictionary defines futile as: 1. Incapable of producing any result; failing utterly of the desired end through intrinsic defect; useless, ineffectual, vain; 2. Occupied with things of no value or importance, addicted to trifling, lacking in purpose.2
Within the medical setting, as rendered by Schneiderman and Jecker, (…) futility refers to a specific treatment-benefit relationship in a particular patient. Futility means that a treatment offers no reasonable benefit to that patient (…). Futility implies that a particular medical intervention produces an unacceptable low likelihood or quality of benefit. (…) Saying no to futile treatment does not mean saying no to caring for the patient, but rather means transferring aggressive efforts away from life prolongation and toward life enhancement in the waning hours and days of existence.3 Therefore, a particular treatment (to deal with, to handle) may be futile, because it fails as therapy (to heal.)3 However, as stated by Lantos et al. futility is an elusive concept, and in medicine it is difficult to predict with complete certainty that a treatment will provide no benefit to a particular patient.4
It is because of that that in situations as such, where a particular treatment might or might not be considered futile, it is very important for the interpreter to constantly check for cues indicative of putative misunderstandings during encounters; the real options of any available treatment and/or plan of care and any expectations on their anticipated outcomes. We have to remind ourselves that if a given treatment can be considered futile, acts of care (to feel compassion for) are never futile.3
It is said that hope is the last thing we lose. There is always hope that even without knowing how, somehow, a new treatment or a new drug may be around the corner to unexpectedly take, at the last minute, the extremely sick patient away from the reach of the grim reaper. We have to consider, though, that (…) a patient might wish to live, but not in an intolerable state. Thus, one reason why it is so hard to say no to futile treatment, is that since society’s life-protecting propensities are so strong, its first impulse – and the impulse of medical providers – is to keep life going at all costs. (…) Rather than admitting the possibility that certain states of existence are worse than death, medicine tends to imagine that death always represents the worst kind of “evil empire.”3
Yet the prospect of attempting to avoid futile medicine while dealing with end-of-life situations might easily be much more pungent for the patient’s entourage than for the patient itself. Is there any interpreter out there who hasn’t at some point interpreted for a patient facing a terminal illness, more worried for the well-being of the healthy ones remaining left behind than by the prospect of his or her own demise? A concern unmistakably voiced by the poet Charles Bukowski in one of his books: Death was no problem to the dead. Death was another movie, it was all right. Death only caused problems to those left behind who had some relationship with the deceased.5
We are not very good on making survival predictions, being often unrealistic by usually overestimating a very sick patient’s survival time; doctors are not an exception and the better the doctors knew their patients the more likely they were to err.3
(…) There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? (…) The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients and their families for the near certainty that those tickets will not win. Hope is not a plan, but hope it is our plan. (…) The people who opt for [certain unapproved and/or untested new treatments and/or drugs] aren’t thinking a few added months. They’re thinking years. They’re thinking they’re getting at least that lottery ticket’s chance that their disease might not even be a problem anymore.1 Here we have in a sense why even with meager prospects of recovery, some patients, pressured in several flanks might be prompt to request futile treatments instead of going for palliative care. But it is known from a study on stage IV lung cancer patients that those [patients] who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives – and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of [by pushing forward specific treatments to certain patients] actively inflicting harm on patients rather than confronting the subject of mortality.1
Some providers and medical institutions might sometimes be too lenient to provide futile treatments because of fear of accusations due to mistaking treatment for care: Weather the medical malpractice system adversely influences the behavior of physicians, causing them to prescribe tests and treatments whose principal aim is to protect physicians [and medical institutions alike] from lawsuits rather than protect their patients from disease, it is subject of continuing controversy. Unfortunately, the latest evidence suggests that fear of liability does distort the practice of medicine. (…) the practice of “defensive medicine” is not always based upon misplaced fears, but is also imposed by unrealistic legal standards. Sadly, though, it is not the physician who suffers the burdens of these unrealistic legal standards so much as the patient.3
Hence, again, the main question is: What does it mean to help the patient? Upon the decision of requesting and providing or not futile medicine we have a patient pressured by a putatively incurable illness and its grim prognosis, the pressure exercised upon him/her by his/her family and friends as well as certain pressure that might be imposed by the medical team devoted to the patient’s care who may be fearful of liability. All too often, [some treatments] make a mockery of caring by substituting invasive procedures for human communication and touch, only adding to patient discomfort in the terminal stages of disease.3 Something that should be avoided at all cost to minimize if not eliminate altogether any possibility of iatrogenic pain.
Our real challenge here as healthcare interpreters is, without ever leaving the neutrality between the interacting parties (again, are the interpreters part or not of the treating team?), manage to convey, acting as cultural brokers, not just a fair but a comprehensive understanding of the culture of medicine to the patient and his/her entourage as well as of the culture of the patient to the caring medical team. Simple at first sight, this is not an easy task; if complete understanding is demanding enough when both patient and provider share a background culture, when they come from separate origins, and being the culture of medicine by some means always interfering, makes it much more contested. Therefore, even knowing it shouldn’t be that way, it makes it prone to be avoided altogether: Two-thirds of the terminal cancer patients (…) reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death.1 Consequently, when dealing with interactions between patients and providers from different origins the cultural gap that needs to be bridged to overcome situations as such is even wider and exceptionally difficult to surmount. Accordingly, as healthcare interpreters, our efforts to assure accurate communication have to be intensified.
The physician has an ethical duty to redirect efforts from life-saving treatments toward the aggressive pursuit of treatments that maximize comfort and dignity for the patient and for the grieving family. (…) The call to emphasize an ethic of care when disease can no longer be cured or controlled requires strengthening collaborative efforts among health care professionals3, interpreters included.
In those difficult situations doctors, depending on the society where they dwell and on the population they serve, and agreeing to the patient’s values, may try to push forward while exhausting a narrow palette of roles1, 6:
- Paternalistic role: doctors have the knowledge and the experience and make the critical choices. The patient provides consent.
- Informative role: the doctors tell the facts and figures; the rest is up to the patient.
- Interpretative and deliberative roles: doctors provide information and control, but also guidance; the doctor helps patients to determine what they want. What is most important to you? What are your worries?
I leave to your judgment which provider’s role should prevail, even though this might ultimately be strongly dependent on the subjacent culture of the patient rather than on the provider.
As healthcare interpreters, we should be considering ourselves constituent part of the medical team devoted to the well-being of the patient whose health is compromised. Besides conveyors of information among the involved parties, it is one of our main duties to provide patients, families, and providers alike with the cultural understanding needed to allow appropriate care and avoid cumbersome and painful futile treatments conducive to nowhere else but to the experience of iatrogenic pain, suffering at the end of life, or prolonged survival in a persistent vegetative state.
1. Gawande, A. 2014. Being Mortal: Medicine and What Matters in the End. Metropolitan Books/ Henry Holt and Company, New York.
2. The Compact Edition of the Oxford English Dictionary. 1971. Oxford University Press, New York.
3. Schneiderman, L.J. & Jecker, N.S. 1995. Wrong Medicine: Doctors, Patients, and Futile Treatment. The Johns Hopkins University Press, Baltimore and London.
4. Lantos JD et al. 1989. The Illusion of Futility in Clinical Practice. The American Journal of medicine 87:81-84
5. Bukowski, C. 1979. Shakespeare Never Did This. City Lights Books, San Francisco.
6. Emanuel E.J. & Emanuel L.L. 1992. Four models of the physician-patient relationship. Journal of the American Association 267:2221-26.