A Good Life to the End: Taking Control of Our Inevitable Journey Through Ageing and Death - Softcover

Ken Hillman is an intensive care specialist who is a Professor of Intensive Care at the University of New South Wales, the Foundation Director of The Simpson Centre for Health Services Research, and a member of the Ingham Institute of Applied Medical Research. He is a pioneer in the introduction of the Medical Emergency Team. He is the author of Vital Signs.

10
Diagnostic dilemmas
I was dealing with two angry colleagues who were arguing about who ‘owned’ Madeleine, the eighty-five-year-old woman in bed 4. Both specialists had heavy clinical workloads and were manoeuvring to avoid yet another admission. Ironically, the patient was an elderly woman for whom little more could be done in terms of curative treatment. Maybe that was the reason why neither wanted the patient admitted under them.
     Madeleine came in with shortness of breath on the back of a long history of smoking. She had been in hospital six times over the last few months, each time for shortness of breath related to her smoking. Unfortunately, you can’t smoke as much as she had for over sixty years without also destroying other organs, including the heart. Accordingly, Madeleine also had some heart failure, contributing to the shortness of breath. The respiratory physician responsible for the lung damage as a result of smoking was heatedly point-ing out that her chest X-ray had changes consistent with heart failure. The cardiologist acknowledged that but said the main reason for the shortness of breath was the underlying damage caused by the smoking. Possession is everything in this game and the patient had already been admitted under the respiratory representative. He was stuck with her. This occurs every day. It drives the emergency doctors to despair, as it is left to them to negotiate the conflict.
     Diseases in conventional medicine are divided into acute and chronic. Acute refers to the rapidity of onset, not the severity of the disease. Chronic refers to the underlying and usually permanent state of health. An example is the acute   onset of a urinary tract infection in an elderly frail person who has multiple chronic problems, such as heart failure, dementia and chronic kidney disease. The acute problem is easily fixed: anti-biotics and maybe intravenous fluid. However, the real problem, the major determinant of the patient’s prognosis, is the underlying chronic health status.
     The seventeenth-century English physician Thomas Sydenham described acute diseases as those when God is the author and chronic
as those that originate in ourselves. Medicine concentrates on the acute disease. It is what doctors are trained to treat. The acute diagnosis is how the hospital classifies the admission; it is the basis for financial reimbursement; it is the source of most of the data on which we plan our health systems. This ignores the fact that, in the case of the urinary tract infection in the elderly, the chronic health status is not only the underlying reason for the acute disease but will ultimately determine the outcome. Unfortunately, many elderly frail people are usu-ally admitted to acute hospitals for management of their so-called acute condition. In an age of medical specialisation, and because most elderly admissions have multiple problems, a patient could be admitted under any of four or five medical subspecialists. It is a largely random process and may vary at every admission.
     Like most elderly patients being admitted to hospital, Madeleine had a host of age-related conditions, or co-morbidities, that did not lend themselves to the concept of a single diagnosis. She also had diabetes, high blood pressure and chronic renal failure. Other age-related chronic health problems include coronary heart disease, elevated cholesterol, gastro-oesophageal regurgitation syndrome, osteoarthritis, previous stroke, heart failure, peripheral vascular disease and chronic respiratory problems. They are such a common feature of the patients admitted to our intensive care unit that we are considering having a stamp made so all we have to do is tick those that are present. The conditions all have medical labels but are almost invariably only found as one ages. Unfortunately, these underlying conditions do not lend themselves well to treatment by conventional medicine. Our hospitals increasingly contain these elderly frail patients. However, very few doctors honestly explain the impact of ageing and that, despite the miracles of modern medicine, little can be done in terms of a cure. But a lot could be done in terms of honest discussion about the patient’s chronic health status and its probable course.
     The concept of a diagnosis is integral to the teach-ing and practice of medicine. We ‘reach’ or ‘make’ a diagnosis. ‘What is wrong with me, Doctor?’ has to be unravelled by finding a diagnosis. The assumption is that there is a single diagnosis. Medical practice is based on the concept of the diagnosis. Getting to the bottom of a patient’s problem is one of the prime goals of clinical practice. It is based on taking a history from the patient; performing a physical examination; establishing differential diagnoses; performing inves-tigations; and, bingo, there it is—the diagnosis!
     Diseases are classified by the World Health Organization using the International Classification of Diseases (ICD). It is used in over 110 countries, in forty-two languages, for clinical and epidemi-ological purposes as well as for health management, reimbursement and resource allocation. The ICD codes for diseases, signs and symptoms, abnormal findings, complaints, social circumstances and external causes of injury and disease, allowing for more than 14,400 different codes and up to 16,000 codes when optional sub-classifications are added.
     In an attempt to make sense of diagnoses, the concept of diagnosis-related groups (DRGs) was introduced by the Yale School of Management in the early 1980s. The fact that it was developed by a School of Management should have rung alarm bells. It was developed to identify ‘products’ that hospitals provide. A specific diagnosis was assigned a certain reimbursement. If you managed the diagnostic problem quickly and without complications you would make a profit. If not, you didn’t. It was a financial tool, not a medical one, constructed around reducing health care to costs. Nevertheless, the system is used universally.
     In theory, it made sense. If you were having a simple procedure, such as the removal of your gall bladder, there was a specific diagnostic label: cholecystectomy. If the operation went well, you were reimbursed a certain amount. If there were complications which increased hospital stay, it was your fault and you bore the cost.
     It’s not surprising that a whole industry has developed, aimed at ‘gaming’ the system. A diagnos-tic system built on such flexible interpretations means the accountants can designate the most financially advantageous label. Hospitals with the most imaginative accountants are seen as the better hospitals. For example, savvy hospitals with the right accountants can improve their mortality from pneumonia by recoding such deaths under other labels such as ‘respiratory failure’ or ‘sepsis’. Similarly, certain labels attracting less funding are recoded under high reimbursement codes. This has nothing to do with the delivery of good health care.
     Madeleine didn’t fit this accountancy-based construct and neither do most of the elderly patients who are currently admitted to our hospitals. The population of patients in the developed world has changed and the concept of a single diagnosis is less relevant. People are now living longer and have an increasing number of chronic age-related conditions. No matter how the ICD and DRG systems have modified their codes, the name or number or even collections of names and numbers do not accurately define the clinical state of the patient. The list of ‘diseases’ or ‘diagnoses’ has now increased to over many tens of thousands, as we understand more about pathophysiology and with access to more complex ways of investigating patients. I can imagine that 200 years ago people died of a limited number of conditions such as cholera, typhus, tuberculosis. pneumonia, trauma, septicaemia and issues related to childbirth. Today, in developing countries, young people also die as a result of a single condition such as tuberculosis, malaria, HIV-related diseases and trauma. But as our understanding of medicine increases, and with the powerful imaging and sophisticated tests that we have today, new conditions are found almost daily.
     However, it is not only about the miracles of modern medicine and making the rare diagnosis. Rather, it is about exploring the changing nature of the patient population; how this relates to the concept of the diagnosis; how that concept is changing; as well as the implications of such change. In particular, we need to explore the shortcomings of rigid diagnostic codes in describing the normal processes of ageing and dying. The specialty of renal medicine, for example, is considering expanding its boundaries by labelling the normal age-related deterioration of their organ, the kidney, as chronic kidney disease. This will mean that almost half of people over the age of seventy-five years of age will have this ‘disease’.
     Despite radical changes in the population of hospital patients, acute hospitals still function in much the same way as they have for over fifty years. Emergency departments remain an appendage to the core business of the hospital. Up until about the 1960s, they used to be places for patients who could not afford private health care in their own home or in the doctor’s rooms. As acute hospitals became the flagships of health care, the role of community-based care changed. Hospitals became places where the technology and medical expertise was concentrated. Society was aware of this and, as such, patients gravitated to the emergency departments of acute hospitals. As a result, emergency department presentations are increasing dramatically, especially in patients over the age of eighty-five.
     Nowadays, people don’t get sick and die within days and weeks. They become old and, in the process, gradually collect conditions relating to wearing out as a result of ageing. They are fighting a losing battle. It is common for the elderly to be increasingly admitted to hospital in the last few months of their lives. The accountants who increasingly influence the way we practise medicine still believe in the concept that a patient is admitted with a single diagnosis; the problem is fixed and they are sent home. Therefore, for the patient to be readmitted means the problem wasn’t solved. The single diagnosis wasn’t treated appropriately and the patient returned to the hospital as a readmission. There are whole industries dedicated to fixing the problem of hospital readmissions. Hospitals can be scrutinised for having a higher than expected readmission rate.
     The inference is that the hospital has done something wrong and needs to be punished. The readmission may be a sign that the hospital failed to resolve the patient’s problem adequately. This in turn could be related to the patient being discharged too early, as delayed discharge also incurs financial punishment. However, the elderly are increasingly admitted to acute hospitals as ageing is irreversible and the medical problems associated with ageing become worse, requiring repeated admissions. This is just the way the medicalisation of dying has distorted our health system. As a result, hospitals are financially punished for treating a certain population of patients not on the quality of the service they provide, but for operating in a society which pretends that diseases as a result of ageing are always treatable. They are also punished for the failure of society to be honest about what medicine can and, more importantly, can’t do. They are punished for the failure of society to provide and fund more appropriate end-of-life care for our elderly.
     Rightly or wrongly many of these age-related conditions have been medicalised. Doctors make negligible or no contributions to the health of elderly frail patients. But it doesn’t stop them incrementally prescribing one drug after another to a person who is on an inevitable decline. And sometimes doctors cause pain and suffering by subjecting elderly patients to unnecessary operations and even condemning them to spend their last few days on machines in an intensive care unit.
     Together with the increase in medical specialisation, a perverse situation has developed. The ageing individual with multiple issues or diagnoses has their conditions artificially divided up among single-organ specialists: experts who attempt to fine-tune their own organ with little regard to the overall picture. These are the ‘sick elderly’ who comprise the majority of patients now admitted to acute hospitals. Ironically they require ‘sick elderly’ care that in most cases is not available in acute hospitals. Instead of simply more tablets and interventions, the care should perhaps be designed around the patient’s functionality and their wishes. Many would prefer to be treated in their own home or a community-based facility, rather than spend-ing the end of their lives in hospital.
     Even though the elderly frail rarely fit into a single diagnostic category, ‘making the diagnosis’ is still at the heart of medicine. Finding the rare diagnosis is the subject of the weekly Case Records of the Massachusetts General Hospital Grand Rounds in the New England Journal of Medicine. Getting the right diagnosis in this weekly puzzle is like cracking the Times crossword. The television series House used to be one of the most popular shows on television. Its star was an eccentric and often abrupt doctor with a limp and a personality disorder. But he is the stuff of legends because he unravelled the case and came up with the correct and invariably rare diagnosis.
     There is nothing wrong with cracking the rare diagnosis but the main focus of medicine is caring for patients. Some of them may be among the grateful few that have a rare disorder but the majority of patients will have a complex interaction of chronic medical and social issues that require equally complex solutions.
     I used to think that general physicians such as the acute care physician or hospitalists might offer the balance needed to manage these patients. However, they too have usually learnt their medicine in the conventional way and are focused on diagnoses and cure. Similarly, geriatricians seem to be more like general physicians of the aged and many are reluctant to practise outside the boundaries of conventional medicine. There are the exceptions who believe that the traditional approach of modern medicine does not work well for old people. Perhaps the anecdotes of our medical colleagues, when considering stories about our own dying relatives, may change the obsession with conventional medical practice to one of more com-passionate and patient-focused care. Unfortunately, it is often easier and more financially rewarding to perform expensive diagnostic tasks and interventions than to spend time explaining, addressing symptoms, considering the social circumstances and being honest with patients and their c...