And now this illness too, which has always affected me so strangely. I am sure it is underestimated. Just as the importance of other diseases is exaggerated. This disease has no particular characteristics; it takes on those of the person it attacks.
- Rainer Maria Rilke, "The Notebooks of Malte Laurids Brigge"

A Word Of Warning

If you do not wish to be spoiled on certain details of the piece, it would be best for you not to read this document until you have finished reading Narcissu at least once.

Table Of Contents

1. The healthcare system
1.1 Primary, secondary, tertiary care
1.2 On being admitted to a hospital
1.3 The anatomy of your medical team
1.4 Nurses, clerks, and the allied medical professions
1.5 Daily routines
1.6 IV access
1.7 Code status and end-of-life issues

2. Disease processes
2.1 Congenital cardiac anomalies
2.2 Hematogenous malignancies of childhood
2.3 Cystic fibrosis
2.4 Systemic lupus erythematosus
2.5 Non-small cell lung carcinoma

3. Hospice
3.1 Mission statement
3.2 Facilities
3.3 Admission criteria
3.4 Life in a Hospice facility

4. Errata
4.1 Setsumi's illness
4.2 The protagonist's illness
4.3 The portrayal of Hospice
4.4 Medication regimens
4.5 Strength and its loss
4.6 Nourishment
4.7 Final words

1. The healthcare system

    1.1 Primary, secondary, tertiary care

  • "Primary care" refers to the "basic" ground level of care that any given healthcare system will provide. Most people who go to a doctor at all are going to see what is termed as their "primary care physician" -- this physician serves as the initial point of contact between the patient and the healthcare system, and is the gatekeeper for the further services that the healthcare system can offer its patients. For instance, in order to proceed to a clinic that offers secondary care services, a patient would generally need a referral from his or her primary care physician.
  • "Secondary care" usually refers to any number of specialist clinics that a primary care physician may sometimes have the need to send his or her patient to. For example, a primary care physician who decides that he cannot handle his patient's psychiatric issues on his own might refer his patient to a psychiatrist -- that is a referral to a secondary care service. That same primary care physician might see another patient who has a skin lesion that he feels is suspicious for melanoma -- and he might write that patient a referral to a dermatology clinic, which is another secondary care service.
  • "Tertiary care" generally refers to a location that can integrate a wide range of allied health professions and technologies to serve the patients in a way that primary and secondary care facilities cannot. Patients tend to be sent to tertiary care facilities when their issues are too complex or too mysterious for the primary and secondary care facilities to manage. While not all large hospitals are necessarily tertiary care facilities, it is certainly true that many of the hospitals affiliated with large universities (like the University of Michigan Medical Center, for instance) are considered to be tertiary (or even quartenary) care facilities. The hospital that both Setsumi and the protagonist find themselves in is one such facility.

    1.2 On being admitted to a hospital

  • A patient is generally admitted to a hospital when his condition has become too unstable or too dangerous to monitor in any other setting, or when there is a specific procedure that needs to be done in a hospital (for instance, the administration of chemotherapy).
  • One lands in the hospital in one of three ways: by way of the hospital's Emergency Department (this is the most common scenario), by way of a scheduled admit for a previously-scheduled medical procedure (e.g. chemotherapy cycle or elective surgery), or by way of a primary care physician who has admitting privileges for that particular hospital (the rarest case; in this instance, your hospital-based medical team would include -- and perhaps even be led by -- your primary care physician).
  • In the case of being admitted from the Emergency Department, the standard story amongst patients goes something like this: something happens to you -- for instance, you might wake up with sharp unrelenting chest pain -- and you rush on over to the hospital's Emergency Department. Once you get there, you will have a welter of paperwork to fill out, and you will be directed to a waiting lounge, where you will probably wait for the next few hours. When you are finally placed in an examination room, you will have to disrobe and put on a flimsy hospital gown. And then, you will probably be left alone for the next few hours. The first person in a white coat to see you will probably be a medical student, who will then report to his resident, who will then report to the attending. Tests might get ordered on you -- or not. Radiological studies might get ordered on you -- or not. You will generally not know whether or not you are getting admitted -- or even what the doctors are thinking is wrong with you -- until much later.
  • Should the decision to admit you be made, the E.D. will call up one of the services on the floors, as appropriate to your condition. Someone who presents in severe congestive heart failure would be admitted to a cardiology service; someone who presents in acute appendicitis would be taken immediately for surgery, then admitted to a general surgery service; someone who presents with first break of schizophrenia would be admitted to a locked psychiatry ward; and someone who presents with something that nobody can figure out gets sent to a general medicine service. The intern on the floor service to which you have been assigned might then come down to the E.D. (or, particularly if it's a really busy day, might wait until you have been transported up to the floor) to interview you -- getting the same story that the E.D. physicians got out of you.
  • At this point, you have spent hours inside the hospital, you are still clothed in nothing more than a hospital gown, you are lying on a lumpy, unfamiliar hospital bed, in a dark, unfamiliar room that smells of death and sterility. Congratulations; you've been admitted to the hospital.

    1.3 The anatomy of your medical team

  • The term "medical team", especially when used in the hospital setting, refers to the entourage of medical doctors and soon-to-be-medical-doctors who make up the core of the clinical service to which you have been admitted. Its members are presented below by order of rank (what this means to the patient: by order of rarity of contact with you).
  • The high man on the roster -- the person with whom all responsibility ultimately rests -- is the doctor known as the "attending". This person is board-certified in one or more specialties, is often subspecialized, and, in university hospital settings, usually holds some kind of professorship. This doctor has the most experience, and serves as the commander-in-chief of the clinical unit; while he might leave minor spur-of-the-moment clinical decisions to his underlings, he will always make the major ones. In the ideal setting, he is also meant to pass on what he knows to his subordinates. In the usual setting, this does not occur all that often. Thus: primum non nocere gives way to primum non docere.
  • On a service that is more subspecialized than general medicine, there might be a "fellow" serving as the direct lieutnant of the attending. Simply put, a fellow is the medical equivalent of a postdoctorate graduate student -- already board-certified, but now subspecializing even further. Like the attending, the fellow generally does not play a large role in the day-to-day care of patients.
  • The field commander of the clinical service -- and the one most directly responsible for the clinical decisions that are being made on the patients' fluctuating conditions from a second to second basis -- is the "senior resident". This person, now one or more years past his or her intern year, is the one who decides which patients his or her service will take, and which of his or her underlings will be the one to take care of an admitted patient. The senior resident is the first person that an intern will page when a serious problem arises in a patient. The senior resident is also usually the one responsible for dictating the discharge summary (a document detailing why the patient was admitted, what his hospital course was like, what studies were ordered on him, why he was discharged, and follow-up disposition) as well.
  • The "interns" are the foot soldiers of the clinical service; while they are made to sound different from all other residents (who themselves are physicians who have graduated from medical school, but are not yet board-certified in their chosen fields), the term "intern" merely refers to the first year of any given residency. These are the doctors who are in contact with their patients the most -- and thus who know the most about their patients as people -- but who know the least about their patients as diseases. Their mission in training: to get to the point where they know nothing at all about their patients as people but know everything about their patients as diseases.
  • The "medical students" are generally 3rd and 4th year medical students on clinical clerkships. They have no knowledge, less skills, and even less of a place on the medical team. This is why they are usually relegated to performing chores that nobody else on the team wants to do. They generally grin and bear this "scut" work, too. Why? Because otherwise they have nothing to do on the service at all.

    1.4 Nurses, clerks, and the allied medical professions

  • This is "everyone else", other than the medical doctors. In all honesty, these people are more critical to the operation of the hospital than the doctors themselves. It is they who provide the necessary support and services that allow the business of the hospital to proceed the way that it does. While it is beyond the scope of this document to detail what every single service in a given hospital does, a few of the more major services are outlined below.
  • The nurses represent the most direct point of contact between the patients and the hospital system. They are the ones doing things like taking AM and PM vital statistics, administering medication to the patients, assisting them with bedpans, and alerting doctors to concerns that the patient might have. Unlike doctors, who really have no set hours, nurses work in specific shifts; at the end of each shift, the outgoing shift gives "report" to the incoming shift. One thing to note is that in the American parlance, a nurse who is RN or LPN certified has gone through postgraduate training (in a similar manner to medical doctors); in countries like Japan and Korea, nursing does not require much more than some education past high school, and thus the role of nurses in those countries is somewhat different from the role of nurses in the American health care system.
  • Several clinical services -- the Bone Marrow Transplant teams and the Hematology/Oncology teams, most notably -- will have one or more clinical pharmacists working closely with them. These pharmacists provide useful insights on the usages and dosing of medications, and also alert the medical team when a possible error in medication and/or medication dosage comes up. Clinical pharmacists who fill these roles hold the position of Pharm.D and are often (especially in university medical centers) tailed by students of their own.
  • When certain medical issues pop up that the primary medical team decides that it cannot handle on its own, the consult services are called. These services, whose compositions are almost identical to those outlined in "the anatomy of a medical team", are thus called because they have no primary responsibility for the patient, but only stop by to examine the patient so that the primary medical team can consult them for their opinions. And these opinions are important -- a general medicine attending would most likely defer to the opinion of an infectious diseases consult service attending in the treatment of a patient who has an uncommon bacterial infection.
  • The clerks and the transportation techs are the ones directly responsible for where the patients are and what they are doing in those patients. For instance, a doctor might write an order for a specific patient to get a CT. The clerk will then take that order, transmit the requisition for a CT to radiology, receive a time slot from radiology, arrange for the transportation techs to be at the patient's room when the time comes, and arrange for the patient to be back on the floor in a timely manner.
  • The social workers provide an important role in the care of a patient who has difficult social issues. On one end of the spectrum, a patient who has concerns about insurance and payment might make avail of a social worker's services. On yet another end, a patient who admits that her husband is physically abusing her might wish to speak to a social worker as to disposition after discharge. And on a very final end of the spectrum, social workers are often found heavily involved in the care of patients who are so heavily debilitated that they cannot take care of themselves -- in placing them in appropriate care facilities after they are discharged.
  • Interpretative services ensure that even should a patient not speak the dominant language fluently, the standard of care is not compromised due to lack of understanding between the medical team and the patient. That said, patients are known to show great appreciation to medical personnel who make every effort to speak their language. Medical students, for instance, who are known to speak certain languages might be pulled aside by their medical teams -- or even by medical teams that aren't their own, but are working in the immediate vicinity -- to go talk to patients who speak that language well but who don't speak the dominant language very well.
  • Many larger medical centers also have pastoral services, in the form of religious clergy from several different denominations who are on call should a patient desire to speak on more religious matters.

    1.5 Daily routines

  • Unless the patient's had a particularly rough night, his or her day generally starts with the AM vital signs reading. This reading, generally done whenever the nurses can find the time to do it (this could be as early as 4:00AM), is a detailed recording of the patient's:
    • blood pressure
    • heart rate
    • maximum temperature over the past 24 hours
    • current temperature
    • fluids in/fluids out
    While there are quite a few other measurements that one could possibly take, in general, the above are the most common set of routine vital signs ordered by doctors. There might be several instances where the frequency of vital signs measurement is increased (particularly when the patient is more unstable) or decreased (particularly when the patient is about to be discharged home), but on general medicine floors, one generally starts with a set of vitals every 8-12 hours.
  • After the AM vitals, the patient is "pre-rounded" on by the junior members of his or her medical team -- the interns and the medical students, for most part. This is because these are the people who will be presenting their patients during the actual "rounds" that are to occur a short time later. If an intern or a medical student is unable to give a good presentation on what has happened to the patient and on what to do next, he looks bad in front of his attending. If he looks bad in front of his attending, his evaluation will be reduced. If his evaluation is reduced, then his grades will go down accordingly. It is often this fear -- and not fear that the patient might be suffering -- that impels medical students and interns both to pre-round religiously so early in the morning.
  • During "rounds", the attending leads the entire medical team on an odyssey from room to room, even from floor to floor, listening to short presentations on each patient who is on the service. This is often the only time in the entire day that a patient interacts with his or her attending, and even then the interaction is often limited to "Hi, Mr. So-And-So, can my interns, my medical students, and the medical students from 15 other clinical services listen to your really interesting heart sound anomaly?". As for the interns and the medical students, this is the only real opportunity they have to impress (or, more usually, disappoint) their attendings.
  • In larger hospitals, dedicated teams of phlebotomy technicians will make their own rounds to draw blood from patients on whom doctors have ordered various clinical laboratory studies. Many patients who are sick enough to be in the hospital have their blood drawn every morning and every afternoon for these labs.
  • After rounds, work begins, and there are no daily routines to speak of anymore. Things happen to patients at random hours, and emergency labs and studies are ordered at all hours. Work proceeds until all that the attending has told the team to get done for the day actually gets done, unless the team happens to be on call that day. There are two kinds of call: short call and long call. In short call, the team takes new admissions up until a set time (usually about 3:00PM), and stays until the patient is taken care of, initially worked up, and stable enough to leave alone for a while. In long call, the team is there all night, taking care of their own patients as well as patients from the other services that are not on call that night. Long call may sound more time consuming than short call, but the truth of the matter is that just because one stops taking any more patients at 3:00PM does not mean that you get out at 3:00PM; in fact, it's far more likely that you'll get out at 3:00AM.
  • By 3:00AM, it's just about time to do the AM vital signs measurements, and it's about time for the medical students and the interns to start rounding on their patients again. Thus does this cycle continue on, and on, and on, and on ...

    1.6 IV access

  • Generally, every patient who is in the hospital will need IV access for some given reason. In most cases, this has to do with the fact that the patient will need to have medications that are only given intravenously, or needs fluid resuscitation, or in anticipation of the patient needing one of those two. In general, IV access is established through one or more so-called PIV's (Peripheral IV's -- confusingly enough, this acronym is also used in specialties like OB/GYN to denote Penis-In-Vagina intercourse, but that is a story for another day).
  • For patients who are on medications that require insertion in a central venous location, or for patients in whom PIV placement has proven to be impossible, a central line must be put in. These lines are much wider-bore than any peripheral IV, and their placement can almost be considered to be minor surgery. Three of the most common central lines placed include the IJ (intrajugular), the SC (subclavicular), and the femoral line. It is not very easy for a patient to move much with one of these lines in place, and it is impossible, of course, for a patient to bathe. Most kinds of chemotherapy for cancer require these kinds of intravenous lines.
  • For patients being discharged on long-term intravenous medications (most often antibiotics), placement of a so-called PICC (peripherally-inserted central venous catheter) line is necessary. These are long, indwelling intravenous lines that generally are inserted into a vessel somewhere in the arm and are then snaked all the way into the superior vena cava, where they rest. These lines must be placed under fluoroscopy (which is the x-ray equivalent of a motion picture), and are minor surgeries in and of themselves. They are also not in and of themselves large-bore enough to accomodate many kinds of chemotherapy on their own.
  • On an only somewhat related note, one of the happiest orders an intern can ever write is the cryptic "D/C IV D/C Home" -- which stands for "discontinue IV, then discharge home". The fact that the IV line is the last thing to be discontinued during the hospital stay gives you some idea of how important IV access is.

    1.7 Code status and end-of-life issues

  • On many general medicine services, one of the first questions that a doctor might ask a patient is what his or her "code status" is. That is to say: should something catastrophic happen, what kind of measures would the patient want used to prolong his or her life?
  • For the vast majority of patients -- especially those who are younger -- "full code" will be appropriate. That is to say, the medical team is to try all possible measures before giving up. For instance, if a patient's heart stops beating, a code would be called: chest compresses, pressor medications, defibrillators, the whole nine yards.
  • However, some patients -- especially those who are very advanced in age, or those who have incurable illnesses -- desire that no such heroic measures take place. There are a variety of reasons why this is so. A code is very painful, and can have many unpleasant (and sometimes even fatal) aftereffects: for instance, during the chest compressions bones are broken (in fact, if you are not breaking bones, you are not doing the compressions right); these bones shatter, letting marrow matter spill out; if the marrow matter finds its way into the bloodstream, one could end up with a fatal marrow embolism. The drugs that one is given during a code are not without side effects, either. Patients who opt not to have these measures performed for them are called "no-codes" for the obvious reason.
  • Another large issue to think about is the fact that as a person rapidly runs out of health, his capacity and his competency to make medical decisions might drop as well. At that point, we enter a veritable legal minefield: who makes decisions for the patient? What is "in the best interest" of the patient? Who decides what that "best interest" is? So for your own good, the good of your family, and the good of the medical system, it is probably a wise idea to think about the decisions you would want made on your behalf when you are too incapacitated to make them for yourself. Tell your family, tell your close friends, what your intentions are. Put it down on paper. Let it be absolutely clear how far you want the medical system to go on your behalf. Don't leave your friends, family, and your doctors hanging from a medical-legal precipice that, in the end, is of your own making.

2. Disease processes

    2.1 Congenital cardiac anomalies

  • Widely speaking, these are conditions in which there are structural abnormalities in the heart -- ranging from conditions in which the various chambers of the heart fail to form correctly to conditions in which the outputs to the lungs and to the systemic circulation are switched around to conditions in which there are defects in the vessels leading from the heart themselves. A complete discussion of the specifics of these anomalies is completely beyond the scope of this document.
  • Many of these can be modified and in effect "cured" through several series of surgeries. However, repair techniques for some of these conditions have been developed rather more recently, so it would be possible for someone of Setsumi's age (22 years old in 2005) to have had a congenital cardiac condition that was either not well repaired at all or badly repaired due to lack of advances in technique given the time.
  • The medications one would take for these conditions are the same that one would take to stave off congestive heart failure: beta blockers, diuretics and the like. Being off one of these medications for a day or two certainly would cause an impact in the way that the specific patient felt if the disease were advanced enough.

    2.2 Hematogenous malignancies of childhood

  • Leukemia -- especially acute lymphoblastic leukemia (ALL) -- is one of the more common malignancies in children, coming in at 23.3% of all pediatric malignancies annually in the United States of America. Non-Hodgkin's Lymphoma and Hodgkin's Lymphoma clock in at 6.3% and 5.0% respectively.
  • One thing that is different about these cancers, though, is that with proper treatment they have cure rates that are far higher than what one generally finds in the adult population. For instance, the cure rate for ALL of childhood comes to something like 80% in the standard cases.
  • The treatment of these cancers is generally done through chemotherapy and radiation, the specific agents depending on the kind of cancer being treated. However, in most cases the agents being used will cause one's hair to fall out, which is a point against the argument that Setsumi's illness might be a malignancy of some sort.
  • It is also relatively rarer for a patient to have to have a surgery as a result of a hematogenous malignancies. There are some cases -- particularly involving T-cell lymphomas -- where the malignant cells gather inside the chest and start squeezing off major blood vessels, which could necessitate emergent surgery to treat. However, it is vanishingly rare that surgery would be used to treat even conditions like these.

    2.3 Cystic Fibrosis

  • This disease -- a multisystemic inherited disease characterized by cell retention of chlorine and subsequent dehydration -- is much more common in places like the United States than it is in places like Japan. It is a devastating disease, marked by poor absorption of nutrients, unremitting bronchiolitis, dehydration, and scarring of the liver. The current life expectancy for children with this disease is around 30 years -- which is a dramatic improvement over what it was even 10 years ago.
  • The medications one must take for this disease are primarily focused on keeping one's airways clear: bronchodilators, steroidal anti-inflammatory agents. One might also take prophylactic antibiotics to ward off any lung infections, which in a patient with CF can be fatal.
  • One might go into surgery for a number of reasons -- pneumothoraces (which one can think of as one's lungs leaking into the chest) are devastating, and sometimes need to be operated on (as opposed to simple chest tube decompression, which is the standard of care for pneumothoraces usually). If the disease has progressed to the point where the patient's life expectancy has shrunk to 1 or 2 more years, one might consider lung transplantation -- the large thoracotomy scars on Setsumi's chest could very possibly be from a procedure like this.

    2.4 Systemic lupus erythematosus

  • An autoimmune disease that most often strikes young females (childhood or adolescence); usually accompanied by fevers, malaise, weight loss, and joint pains. Pathologically, it is characterized by widespread connective tissue inflammation and arteriolar vasculitis (that is to say: the blood vessels are inflamed and leaky).
  • One of the most dreaded complications of SLE is the nephritis, which in some patients can progress to renal failure and then death. Given her clinical presentation, symptomatology, and treatment detail, it is likely that the heroine of Kana -imouto- has SLE, with Type IV lupus nephritis (which occurs in 40% of all patients who have lupus nephritis, causes rapid progressive renal failure, and is often fatal).
  • However, in the case of Setsumi, while SLE is certainly a possibility, it is a less likely one. The kinds of drugs one would have to take for SLE are completely of the anti-inflammatory and immunosuppressive varieties. While none of them generally cause one's hair to fall out, the mainstay of anti-inflammatory treatment happens to be steroidal in nature. That is to say that many patients who have been treated for SLE for a long time develop the complications of long-term anti-inflammatory steroid use, which includes truncal obesity, a particular kind of configuration of facial fat, diabetes, and so on. Setsumi displays none of these characteristics.
  • Finally, surgery other than renal transplantation provides no role in the treatment of this disease.

    2.5 Non-small cell lung carcinoma

  • Lung cancers are generally divided into two different categories: small-cell (which is 100% related to smoking and may not present with a large discrete mass in the lung, instead choosing to metastasize everywhere) and non-small-cell (which are futher divided into squamous-cell, large-cell, and adenocarcinoma, the last of which can happen in nonsmokers). A non-small-cell lung cancer, specifically an adenocarcinoma, is beyond a doubt the disease that the protagonist has.
  • Why? This is because of the one detail of his treatment that we are allowed to know from the text. The author mentions that the protagonist has been on treatment with Iressa; this drug (generic name: gefitinib) is a powerful new agent that is currently only being approved for treatment of chemotherapy-resistant non-small-cell lung carcinomas. Furthermore, we know that the protagonist had some kind of operation done on him -- this would have been a partial pneumonectomy to resect out the tumor in the lung, presumably with initial intent to cure the disease entirely.
  • Unfortunately, non-small-cell lung cancers that have already spread elsewhere tend to respond very poorly to chemotherapy, thus limiting the treatment options for someone (like the protagonist) who has developed disseminated disease.
  • The only caution here is that it is very unlikely to see someone who is 20 years old come down with a lung cancer of any kind, smoker or no. However, it does happen in vanishingly rare instances; the protagonist just happens to be unlucky enough to be one of them.

3. Hospice

    3.1 Mission Statement

  • Hospice is a concept of caring derived from medieval times, symbolizing a place where travelers, pilgrims and the sick, wounded or dying could find rest and comfort. The contemporary hospice offers a comprehensive program of care to patients and families facing a life threatening illness. Hospice is primarily a concept of care, not a specific place of care.
  • Hospice emphasizes palliative rather than curative treatment; quality rather than quantity of life. The dying are comforted. Professional medical care is given, and sophisticated symptom relief provided. The patient and family are both included in the care plan and emotional, spiritual and practical support is given based on the patient’s wishes and family’s needs. Trained volunteers can offer respite care for family members as well as meaningful support to the patient.
  • Hospice affirms life and regards dying as a normal process. Hospice neither hastens nor postpones death. Hospice provides personalized services and a caring community so that patients and families can attain the necessary preparation for a death that is satisfactory to them.
  • Those involved in the process of dying have a variety of physical, spiritual, emotional and social needs. The nature of dying is so unique that the goal of the hospice team is to be sensitive and responsive to the special requirements of each individual and family.
  • Hospice care is provided to patients who have a limited life expectancy. Although most hospice patients are cancer patients, hospices accept anyone regardless of age or type of illness. These patients have also made a decision to spend their last months at home or in a homelike setting.

    3.2 Facilities

  • Hospice can work in a variety of fashions. Some of the more common ones are listed below.
  • One fairly uncommon mode of Hospice in the United States of America comes in stand-alone Hospice facilities -- these are long-term care facilities, usually set in scenic locales, usually with very nice furnishings, and staffed by competent medical personnel at all times.
  • Some hospitals have floors or wards that are designated Hospice wards. These areas tend to have much nicer rooms and facilities than other areas of the hospital, and the patients who reside within these wards are generally given a few more liberties than the normal hospital patients. This kind of Hospice facility is the place that Setsumi and the protagonist find themselves in.
  • Home Hospice care is what most of the patients who are enrolled in Hospice end up doing -- in fact, over 90% of all Hospice participants are at a private residence! Hospice doctors and nurses might come by to one's home every once in a while in this model, and physical therapists and other allied health care professionals might be marshalled to provide such a patient with the best possible care over time.
  • As a final note, there is a kind of short-term Hospice-like home-care option known as "respite" -- in this situation, skilled personnel "take over" the care of an individual who needs constant supervision and care to allow the primary caregiver some time to him- or herself. Note that respite care need not be in the bounds of Hospice; it can apply to any long-term care situation, even if the patient has a long life expectancy with the proper care.

    3.3 Admission Criteria

  • The patient must be suffering from an incurable disease.
  • All treatment options must have been reasonably exhausted.
  • The patient must have three or fewer months to live, as best estimated by an experienced clinician. Note that in this last case, a patient who has come to the end of three months at Hospice can continue having Hospice care -- all the doctor needs to do is re-certify that the patient has three or fewer months to live at this point, best medical estimate.

    3.4 Life in a Hospice facility

  • Shall we not let the voices of the patients speak for themselves on this issue?

4. Errata

    4.1 Setsumi's illness

  • Setsumi's illness is a mystery; not enough information is given to firmly influence the reader to one diagnosis or another, but a few of the more likely diagnoses -- congenital cardiac anomaly, hematogenous malignancy of childhood, cystic fibrosis, systemic lupus erythematosus -- are given above.
  • The fact that she has hair that long would tend to speak against someone with a malignancy; the fact that she has large postsurgical scars that are fairly new in origin (surgery for the repair of a congenital cardiac anomaly would happen very early in life) would tend to speak against a congenital cardiac anomaly; the fact that she looks thin and frail would tend to speak against systemic lupus erythematosus. Therefore, among the differential diagnoses mentioned above, it is probable that Setsumi suffers from an intractable cystic fibrosis, had lung transplantation fairly early on, and did better than anyone could have expected with it.
  • Even so, this is a fairly shaky diagnosis, even on the best of days.

    4.2 The protagonist's illness

  • No argument here -- the protagonist suffers from a relentless non-small-cell lung carcinoma. He is status post partial pneumonectomy (which as done with the intention to cure the cancer), but his cancer has metastasized. He was put on Iressa, but it did not do very much good for him. And now here he is, devoid of any other treatment options.
  • There is only one very concerning thing here, and that is the fact that this young man is 20 years old. It is vanishingly rare that someone of this age would have any kind of cancer at all, let alone a non-small-cell lung carcinoma. However, as noted above, such cases do happen -- they just happen to be about as common as hens' teeth.

    4.3 The portrayal of Hospice

  • Whether intentionally or unintentionally, Tomo Kataoka paints Hospice in a very negative light in this piece.
  • First of all, the doctors flat out lie to the protagonist about its purpose -- they tell him at one point that it is a place where unique therapies are tried in order to cure the patient, which could not be further from the truth -- in fact, it is better said that a Hospice ward would be the only place in a hospital where therapies with the intent to cure the patient of a disease were not being instituted.
  • Second of all, the Hospice ward is portrayed as a cold, empty place with no one in it, patients left to fend for themselves in terms of interests and activities, nothing to do except to watch TV. This could not be further from the truth -- in the Hospice setting the patient is encouraged to engage in as many activities as he or she would like, and is constantly being dragged by nurses and other personnel to these activities.
  • Finally, the patients on 7F are portrayed as being prisoners of a sort. Again, this is very strange, given that patients on Hospice care are generally allowed to wander anywhere they wish, within limits.
  • That said, it is quite possible that these attitudes toward Hospice are colored by the narrator's own viewpoint toward the healthcare system. It is entirely possible that he is not reporting accurately on these matters -- and does not care to -- such is his antipathy toward both what is happening to him and the system that has taken over his life.

    4.4 Medication regimens

  • At one point in the piece, the protagonist narrates that he was told that he could go at most two days without his medications -- after that, he would be in trouble. While usually, this kind of statement is very sketchy from a medical standpoint, it might be entirely reasonable given the circumstances Setsumi and the protagonist find themselves in.
  • In the protagonist's case, the medications he must keep taking are probably various pain medications; without them, he would be in so much pain that he could not function at all. This kind of situation is not uncommon at all among advanced-stage cancer patients.
  • In Setsumi's case, if she has some kind of autoimmune disease or a disorder like cystic fibrosis, a few days without her anti-inflammatory medications could serve as the trigger for a violent flare of the disease process, which could very well prove fatal if she did not get help in time.
  • What is somewhat problematic is the way the drugs are dispensed in a certain scene in the work. Any pharmacist would ask to see the prescriptions first; he would not bring medications to the counter first. Also, the kinds of medications that both Setsumi and the protagonist need are generally only found in the pharmacy departments that exist within hospitals, not even in pharmacies that are affiliated with hospitals.

    4.5 Strength and its loss

  • Believe it or not, even a week spent lying in a hospital bed can leave a patient far physically weaker than he was before. This is a mixture of muscle atrophy, emotional imbalance, and lack of sleep.
  • That said, the very rapid deterioration of strength seen throughout the course of this work are most likely more a result of fatigue than they are due to acceleration of any disease process. After all, it is an exertion to drive around all day, and the diets that Setsumi and the protagonist choose to maintain aren't exactly the most nourishing in the world.

    4.6 Nourishment

  • While it is possible for a patient with end-stage lung carcinoma to survive on a few riceballs and a few sports drinks a day, it is difficult to believe that he could even muster the energy to drive a car for one day without falling asleep on this kind of diet -- let alone for a week straight.

    4.7 Final words

  • When all is said and done, and all the medical inconsistencies present in Narcissu are tallied up, one must remember a few things:
    • Tomo Kataoka is not a trained member of any of the medical professions
    • That said, he made a valiant effort to at least not get the medical details wrong
    • One of the translators who worked on this localization is a 4th-year medical student
    • Many of the things that he took issue with are details that anyone without appropriate medical training would not notice
  • Therefore, I say to you: accept this piece the way it is, medical inconsistencies and all. The spirit of the work is not damaged in the places where it got medical details wrong, and it would be petty to criticize the author for not knowing some of the things that I knew when I translated the piece. So go forth; read Narcissu again with a somewhat more broad understanding of the medical issues involved; but do not raise your voices in criticism against Tomo Kataoka. The only thing he deserves out of you is your wholehearted thanks and praise for having brought this wonderful piece to you.
18 August 2005
Seung Park
4th-year medical student, University of Michigan Medical School