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NOTES FROM THE WAITING ROOM
NOTES FROM THE WAITING ROOM: Managing a Loved one’s End-of-Life Hospitalization, by Bart Windrum
      The author’s parents both died in a hospital, unexpectedly, at separate times. The first chapters of this book are a rant by an angry adult child. By the end of the book, he channeled his frustration into productive ideas that may improve the quality of ANY hospital experience for readers, not just end-of-life. 
   50% of Americans die in the hospital
· The patient/family should be the unit of care during a hospitalization, but usually it is not
· Time-based trial – time allowed for a specified medical treatment that has been agreed upon before it is implemented. If it does not work, it is stopped.
· Families are not informed of alternative care options
      One of the book’s themes is that hospitals do not provide ‘care’ as lay people understand the term. Rather, hospitals provide “bodily repair services”.  “Hospital treatment is the application of science and technology to inhibit, reverse, or cure bodily ailments.” The ailment (diagnosis) becomes the focus of hospital attention while the person with the condition and his family become ‘peripheral’. The medical diagnosis is translated into a billable code to send to the insurance company. If there is no code, insurance does not pay. This means that people do not die of old age in a hospital because old age is not curable and cannot be assigned a billable code. 
    The lay person’s concept of ‘care’ differs significantly from the hospital’s use of the term care. Understanding this difference helps the family be a better advocate for the patient. ‘Care’ to patients and families implies compassionate attention. Notice the hospital billboards and ads. They are intended to make us think that this kind of ‘mom and pop’ care is provided at their institution; however, they are actually part of a marketing campaign. What families expect, especially after seeing hospital ads, is round the clock compassionate attentiveness, the same type of care the family provides for loved ones. This is not the type of care patients receive in hospitals.
      Families of patients suffer painful emotional and psychological shocks as a result of their confusion over expected care versus the care received. For example, hospital food service brings in a tray and sets it on a table; later they pick up the tray. If your loved one cannot feed themselves, or if they are asleep, they may not eat unless there is a family member present. 
   Hospital care for critically ill patients is complicated by modern technology. Dying is no longer allowed to be quick; it is “protracted”. There are ethical issues surrounding life support and resuscitation.
   The other theme that runs throughout the book is the lack of communication with the patient’s family. Families and patients expect to be kept informed of the diagnosis, progress, and treatment options, but this communication is not the norm.
   In an ideal hospitalization, there is one physician that manages the case. Specialists treat the organ of their specialty rather than the whole patient. Attending physicians talk to each other but rarely with the family. It is almost impossible for a family member to know how the loved one’s case is being coordinated. ‘Discontinuity of care’ is a major problem in the current hospital ‘system’, according to medical ethicists. 
      Most hospital physician care is now provided by hospitalists; these are doctors hired by the hospital, who generally do not have a private practice. They work on shifts like all hospital staff. This means that medical information about the loved one must be passed on along to the next doctor several times a day. Hospitalists do not have a prior relationship with their patients, and may never see them after discharge. They may rotate, such as one physician in the practice sees patients one week, and another sees those same patients the following week.
      You as the patient advocate need to get some basic information when your loved one goes into the hospital.
- What time do the doctors make their rounds? Usually rounds are done early in the morning. Make sure that someone is there to speak with the doctors while they are there.
· What are your attending physician’s relationships with the hospital and each other? Which are hospitalists, and which are specialists with a private practice? Which doctor is actually in overall charge of your loved ones’ case? 
· How are weekends and holidays staffed? How does this change of staff affect treatment? For example, there may be no physical therapy on weekends and many tests re not run on weekends. This affects the length of stay.
    As your loved one’s advocate, keep a written journal that you can bring into any meeting with names, dates, and details.
     Prognosis is the medical term for forecasting; i.e., Will the patient recover? Or, Will she have permanent disability? Forecasting includes what is likely to happen and what might happen. Forecasting is vital to patient care. It is impossible to make treatment decisions without knowledge of what might happen if you make any of the various choices for treatment. Forecasting also lets the family know that their loved one may be terminal. Without forecasting, the family may be completely in the dark and suffer shocks when medically expected outcomes occur.
     No doctor has a crystal ball. Most physicians are extremely reluctant to make any kind of forecast. Asking for exact predictions is unrealistic, especially if your loved one is frail. Remember that hospitals do bodily repair. If your loved one’s body is damaged beyond a reasonable hope of repair, the family needs to be informed of that. Unfortunately, many families find out their loved one is dying only moments before the event but the medical staff knew it was inevitable much earlier. Families miss last opportunities to spend quality time with dying loved ones because of the lack of communication with the hospital staff.
     Hospital time. Thursdays are important. Any tests that have not been ordered by Friday morning probably will not happen until Monday. You will be charged for being in the hospital over the weekend but there may be nothing happening. Most senior personnel have weekends and holidays off, leaving the less experienced staff in charge. Hospital pharmacies have the same staffing issues. This can cause delays in getting new medications started.
     Resuscitation is the application of potentially life saving procedures. The patient can sign a DNR statement that prohibits resuscitation under certain conditions. In contrast to public expectations, only 1-3% of resuscitation attempts in real life are successful. Of these, about ½ suffer significant functional impairment after resuscitation. Perhaps 5% of patients who are resuscitated live to make it to hospital discharge.
     Time-based trials are a good alternative to the black-and-white language of most DNR’s. These time-limited trials allow an intervention to be tried, such as intubation or medication. If at the end of the allotted time, the treatment is not working, as defined before the treatment is started, then it is discontinued.
     ‘Heroics’ is the term for actions implemented during resuscitation, the efforts to extend life. It also applies to all the weeks of treatment in a final hospitalization. Why engage in heroics? Because we don’t want to die. “But why not, if we have already lived full lives?” The author suggests that heroics start at the first crisis, the first life-shortening emergency, the first heart bypass, the first stroke, the beginning of dialysis. After this initial event, the patient lives heroically with deficits and treatments and assistive devices, often for many years. These are heroic actions that “satisfy the human imperative to fight for life and to sanctify we life we are given by Creation by not giving up on it” But one day, every person engaged in these heroic life-saving actions will fail. They will change from living with the disease to dying from the disease. That day usually leads to hospital, where the decision must be made whether to continue curative treatment, no matter how futile, or to choose to die in peace “in a humane environment under nurturing conditions.”
     Dying in a Hospital and Palliative Care. Dying in a hospital involves the hospital experience, where the patient as a whole person is not the focus of treatment; rather, the diagnosis drives treatment. Death in a hospital occurs unexpectedly; dying is not diagnosable or billable, only curative activity is. The hospital experience is subject to the values of a high-tech medical system that is very uncomfortable with the reality of death. Dying outside the hospital can be more humane.
      The goal of palliative care is the mitigation of pain. This type of care can be given in a hospital, once the focus changes from cure to comfort. Curative interventions often cause discomfort. Palliative care offers pain relief. There is a movement now to recognize pain as the fifth vital sign. If successful, pain would be assessed along with blood pressure, pulse, respiration and temperature.
     Hospice focuses on palliative care. Admittance to hospice care requires a terminal diagnosis with death expected within 6 months. The focus of treatment changes from “doing to to doing for.” Patient families whose loved one fails during a hospitalization have zero time to plan for the end-of-life or say final good-byes. Entering a hospice program can give the family and the patient time to make decisions. Unfortunately most patients are on hospice less than a week. This is because patients may agree to hospice only at the end of an exhausting hospital experience, after they are already actively dying. Typically it takes several days to die after curative efforts have ended.
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