COPD patients’ rights: Can they be won?
International COPD Coalition, Gig Harbor, WA, USA
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Commentary
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Abstract
J Thorac Dis 2012;4(2):206-211. DOI: 10.3978/j.issn.2072-1439.2012.02.02
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The Yellow Emperor's classic textbook of internal medicine
(Figure 1) and the Hippocratic (Figure 2) corpus of documents
originated more than 2,000 years ago.
Figure 1. The Yellow Emperor of China.
Figure 2. Statue of Hippocrates.
The Greek works were to serve as textbooks for practitioners,
but their enduring value today is their moral and ethical concepts
of physicians' behavior toward their patients (1-3).
The Yellow Emperor's work was a treatise on the philosophy
of health and disease based on Taoist thought, but it also
outlines how the physician must inquire about the patient's life
and the patient's concerns and instruct the patient about healthy
behaviors (4).
Both of these works have impor tant philosophical
dimensions, and the philosophy of medicine is always important
for the practice of medicine, but I believe that the most
important similarity between the two views of medical practice
is the centrality of the patient's right to ethical health care.
However, patients' rights are not restricted to their
interactions with physicians. Patients are part of families,
communities, countries, and the world. Patients have a right to
expect support for their health from society at large.
As the Executive Director of the International COPD
Coalition (ICC), the global organization of COPD patient
organizations, I have heard from COPD patients around the
world that the treatment of COPD is often carried out without
a concern for their preferences about care, its cost, or even the
outcome of their care (5)!
In many countries, including my own, the United States, it
appears that COPD patients are viewed more as a marketing
opportunity for medical goods and services than as individuals
with their own needs, preferences, and rights. Further, the
extreme commercialization of medicine that has occurred
during the past 50 years in many countries has eroded physicianpatient
relationships and undermined the COPD patient's
right to health care in favor of financial gain for the medical
industry (6). Society at large has also diminished its support and
understanding of COPD patients and of its obligation to prevent
COPD where possible.
In response to these erosions of COPD patients' rights, the
ICC has worked with its member and partnering organizations
to develop a list of 7 essential COPD patient rights (Figure 3)
that was endorsed by the ICC member organizations at its Rome
meeting in 2009 (7). Because of the variations of cultural and
financial conditions across different countries, these rights are
stated in general terms so that specific actions can be considered
based on individual countries' resources (8). Many national
COPD patient organizations have endorsed and translated this
COPD Patients' Bill of Rights and use it in their advocacy and
dialogue with medical organizations, health ministries, and other
government representatives. These rights are divided between
responsibilities of caregivers and responsibilities of society itself,
but in most cases these rights are a shared responsibility. As I
list these 7 rights I will provide some information about the
challenges patients face in making each of these rights a reality.
Figure 3. ICC's Global COPD Patients' Bill of Rights.
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COPD patients' right to early and accurate diagnosis
An important action that deserves special attention with regard
to COPD diagnosis is the Chinese funding of COPD research
in early COPD diagnosis. In most of the world, COPD patients
are diagnosed only when they become very symptomatic at
which time more than half of their lung function has been
destroyed by the disease. In China, Prof. Nanshan Zhong and
his colleagues have done studies in which they have succeeded
in diagnosing COPD in its very early stages. They found
that early COPD behaves differently than advanced COPD
in that airway obstruction shows much greater reversibility
in response to therapy and this provides an opportunity for
vigorous therapy, emphasizing medications, smoking cessation,
and reducing exposure to toxic inhalants (9). By working with
primary care physicians and community health authorities,
the Chinese researchers believe that much better monitoring
and diagnosis of high-risk patients to identify very early
COPD is possible and that this, for the first time, could lead
to a slowing of the damage to the lungs or even a restoration
of the normal lung physiology with appropriate care (10).
Giving COPD patients and their physicians a strong hope for
recovery could reverse the current pessimistic attitude toward
the disease. More research is needed to verify these findings
in early COPD, but it is clear that simply ordering expensive
pulmonary function testing, treatments, and medications that
do not affect patient outcomes is not enough. An essential
feature of the early diagnostic approach is the use of simple
peak flow meters or hand-held FEV1 meters (10). And the
involvement of primary care doctors to closely monitor
high-risk patients over time makes the identification of very
early COPD possible. Early diagnosis may be essential in
providing COPD patients with the right of effective therapy!
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COPD patients' right for information and education about COPD
Too often in developed countries, clinical research studies look
only at the effects of therapy on surrogate values. For example,
in COPD they emphasize FEV1 measurements, which do not
correlate well with improved patient outcomes late in the disease
(11,12). Often such therapies have high incidences of disabling
side effects and are very expensive (11,12). Such studies
frequently do not provide comparisons of different therapies or
analysis of whether a particular benefit (eg. fewer exacerbations)
can be obtained with one less expensive drug or whether several
drugs are needed to obtain the benefit. Such approaches that
neglect patient cost and patient outcomes seem to be designed
by drug regulatory agencies to facilitate approval of new,
expensive, and unnecessary therapies. The ICC urges drug
regulatory agencies worldwide to focus on patient outcomes
rather than effects on surrogate variables. It recommends that
better information and education for COPD patients would
improve COPD outcomes more than research that doesn't
consider patients’ views (7).
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COPD patients' right to support and understanding
During the first half of the twentieth century, primary care
medicine in its many forms predominated throughout the
world. COPD patients were part of their communities and their
doctors provided continuity and comprehensiveness of health
care for them. However, since that time there has been a global
increase in the prevalence of specialist physicians and a decrease in the number of primary care physicians to the point that in
many countries COPD patients have lost their access to their
own family doctor, and with that lost many of their rights to
continuity and comprehensiveness of health care. Community
support and participation in COPD patient organizations
can help to provide COPD patients' right to support and
understanding.
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COPD patients' right to receive care and therapy that will benefit them
With the increase in specialty care, which often uses expensive
high-tech methods, the expense of COPD patient care has
increased substantially in most developed countries, with mean
yearly COPD health care costs much greater today than in the
past (13). The highest COPD care costs are in the United States,
although many developed countries are also experiencing large
health care cost increases (14,15). For patients without health
insurance or unable to pay for care, their rights to therapy are
seriously curtailed.
This increase in cost is difficult to understand, because
between the days of my medical residency in the 1970's and
today there has been little change in the therapy for COPD,
both in outpatient and inpatient care: smoking cessation,
bronchodilators, corticosteroids, antibiotics, oxygen, and chest
physiotherapy remain the foundation. Evidence has not shown
that life expectancy, co-morbidities, or activity limitations have
changed during this time. What could account for the large
increase in costs for the COPD patient if the treatments or their
outcomes have not changed substantially?
After reviewing US COPD data in the NHLBI Chart Book
(16) and discussing the financing of COPD care in the US with
health economist Dr. David Armstrong, several points became
clear. The cost of COPD care has risen about three-fold since the
1970's. Just from 2002 to 2009, direct and indirect costs in the
US increased from 32.1 billion USD to 49.9 billion USD (16,17).
This is a much larger increase than the overall increase in US cost
of living during that time period; however, it is a similar increase
to that of overall health care costs in the US. These high costs
prevent many COPD patients from receiving care and the same
can be said for many other serious diseases.
Coronary artery disease care in the US costs more than
COPD care (16,17), but the improved results of therapy justify
its additional cost. Morbidity, mortality, and prevalence of
heart disease have been decreasing while COPD prevalence
and morbidity have been steadily increasing. Improvements
in the reduction of hyperlipidemia and high blood pressure,
thrombolysis, bypass surgery, and coronary stenting procedures
have all benefited cardiovascular patients, whereas there have been few improvements in COPD patient care or outcomes over the
past 40 years to justify the large increases in cost of their care. This
unfair situation for COPD patients argues for efforts to lower the
cost of COPD care and also to provide more funding for COPD
research so that improvements in care may finally be achieved.
Because about 70% of direct costs for COPD in the US are
related to hospitalization (16,17), one can surmise that the
commercialization of health care in the US and the rapid increase
in hospital care costs that it causes are responsible for the
increasing financial burden on COPD patients and their families.
The fact that little if any benefit in terms of COPD patient
survival, prevention of the decline of lung function, or improved
well being results from this care indicates that COPD patients
are not greatly benefiting from it, which makes the increasing
cost all the more onerous.
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COPD patients' right to a fair share of society's involvement and investment
In my opinion, it is the increasing commercialization of medical
care in many countries that is largely responsible for the increasing
costs. This situation is even more unfair for COPD patients
because the escalation of cost often comes with little or no
improvements in patient outcomes. It highlights how the health
care system increasingly exploits patients, draining the patients'
resources to enrich the health care industry that provides services
to them (18). In some countries, such as the United States, there
has been a dramatic increase in the number of middle class citizens
who have been reduced to poverty by family health care costs,
and the disparity between the incomes of the wealthiest members
of the population and the rest of the population has dramatically
increased (19,20). In addition, health care inequality based on
racial, socio-economic, and other grounds has increased and
represents a further handicap to certain COPD patients (21). I
believe that these effects can be attributed, in part, to the overcommercialization
of health care and the increasing wealth and
power of the health care industry in many countries.
In some conditions such as atherosclerotic heart disease, new,
expensive, high-tech techniques can be life-saving (22). However,
when a large part of the funds for health care in a country are
used to benefit elderly, wealthy patients and preventive care and
funding of treatable fatal diseases throughout the population
are ignored, the country's life expectancy, infant mortality, and
burden of disease statistics will worsen. Expensive, high-tech care
should not deprive a country from having preventive medicine
and essential care available to the entire population.
The purpose of the COPD Patients' Bill of Rights (7) was to
provide COPD patient organizations with a platform on which to
lobby health ministries and health care systems. At the recent ICC
World Conference of COPD Patient Organizations in Shanghai,
the 480 attendees discussed the importance of finding role model
countries with respect to improving COPD prevention and
care (10). The Health Ministry activities in China were of great
interest. Their funding has facilitated a new approach to COPD
diagnosis using low-dose CT scanning of the lung. It has proved to
be accurate in diagnosing COPD even when only 10% of the lung
has been impaired. These CT studies in China were performed
for only 300 RMB ($45 USD) per exam, although thoracic CT
studies in Western countries are much more expensive. This
Chinese research is a good example of an effort to develop ways
to provide COPD patients their rights by implementing diagnosis
and treatment that benefit them. Such research brings hope
because it is targeted to improve patient outcomes.
There was agreement at the World Conference that China
is an excellent model for national COPD efforts since it has
acknowledged its serious problem with COPD, which most
countries do have. According to current trends in China there
will be twice the current mortality from COPD in 10 years!
Because of this, China has taken strong and effective action to
confront the problem. Accordingly, Prof. Jean Bousquet, the
Chair of WHO’s Global Alliance against Chronic Respiratory
Diseases presented the ICC Achievement Award to Dr. Zhu
Chen, Health Minister of China, for his vigorous efforts to
confront both the causes and results of COPD (10).
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COPD patients' right to advocate for improved COPD care and prevention
A leader of global family practice organizations related a story
from his own experience in which a 50-year-old man who
was in medical training in the US developed a peculiar chest
pain whenever he took a test. Uncertain as to how he should
proceed with clinical evaluation of the pain, his attending
physician presented the case to a psychiatrist, a cardiologist, a
gastroenterologist, and an orthopedic surgeon. Each specialist
recommended a thorough (expensive) work-up of the patient
to look for the source of the pain in their own specialty's organ
system, using the tests and procedures that they could perform.
This anecdote suggests that even among highly trained
specialists, self interest can play a large role in medical decision
making. Such commercial exploitation of patients deprives
them of their rights to good health care. The primary objective
of a patient's care should not be financial gain for their health
care providers. Conflicts of interest (COI) such as this also have
been found to affect the conclusions of experts participating
in the development of clinical practice guidelines (CPG), and
an approach to combat such COIs has been developed (23)
using a WHO-approved method of assessing the conclusions
of CPGs called the GRADE method (Figure 4). It involves a
number of steps (Figure 5) to assess whether COI exists among
the guideline participants and process, to ensure that costs are
considered, and to assure that patient preferences, adverse effects,
and outcomes are considered (23). Because of these findings, the
ICC has taken a position that it will not recommend any CPGs
that did not include a GRADE analysis of its recommendations.
Figure 4. Meaning of GRADE Acronym.
Figure 5. GRADE Process.
However, in the United States, COIs are not always
considered to be a problem. Dr. Margaret Hamburg, Director of
the FDA, recommended that efforts to seat advisory committee
members for FDA without COI was too difficult and should be
abandoned (24). Here again, the patient’s outcomes and welfare
are not the primary considerations, the ease of the bureaucratic
process is more important. Patient representatives are seldom
or never included in the development of CPGs nor do they
play an important role in the decision making of regulatory
organizations. This represents a serious abridgement of patients'
right to advocate and an abuse of their right to care that benefits
them. In the ICC's opinion, a diverse group of representatives:
medical specialists, government health ministry representatives,
COPD patients and their leaders, and primary care physicians,
should all participate in developing CPGs, and those with COIs
should not participate.
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COPD patients' right to safe air and environment
The wide range of government programs proposed, started, or
expanded in China to address COPD became ICC's role model
for COPD patient organizations in other countries to lobby their
health ministries and governments. The programs in China include
those listed in Table 1. Countries that implement or increase such
programs within their countries deserve praise. For example,
countries like China that act to implement new environmental
protection laws are to be praised while countries like the United
States, which repeals environmental protection laws, supposedly
to stimulate business, deserve censure (Table 1) (25,26).
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References
Cite this article as: Grouse L. COPD patients' rights: Can they be won? J
Thorac Dis 2012;4(2):206-211. doi: 10.3978/j.issn.2072-1439.2012.02.02
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