Do You Intend To Be a 'Responsible' Patient?

Heinz Redwood
January 11, 2002 (Reviewed: January 26, 2004)

Patients' rights

We hear a lot about patients' rights nowadays. That is as it should be because, in the past, the rights of patients have often been neglected or regarded as a side issue in health care. In most countries of the industrialized world, governments, health authorities, insurers, administrators, employers, and at times even physicians had become more concerned with the bottom line of budgets, costs and expenditures than with flesh-and-blood patients and their rights. Health-speak had turned patients into 'cases'.

Statistical analysis and bureaucratic control were brought in to identify and, if necessary, punish the 'outliers': those doctors who were prescribing excessively and expensively, and patients who were lavish consumers of health care goods and services. Health policy was being tuned to process the average patient. Indeed, process was becoming at least as important as product. It was evidently easier - and less costly - to manage the process than to produce the best result. The best, by definition, is never the average.

The underlying problem with defining The Average Patient as the standardized target for health care payers and administrators can be expressed in one short sentence:

Very few of us are average patients.

As a rule, most of us irritate bureaucrats: we spoil the tidiness of their carefully laid plans for expenditure, because we happen to be individuals. As patients, we stray from the average -- and many of us think we do, even when we don't. Once upon a time, patients did as they were told. Now they assert their rights.

The politics of patients' rights

In the United States, the issue has risen to prominence in the politics of health care. In Congress, Patients' Rights bills have been approved in the House and Senate but have not yet become law (Washington Post articles, July 26-August 5, 2001 ¹). The proposals are part of a wider political backlash against managed care, which, in the late-1990s, came to be seen by patients as 'more interested in managing money than in managing care'. Like most generalisations, this is at best half-true. Managed care has improved health care efficiency by leaps and bounds. The 'responsible' patient ought not to object to that. But like most efforts to reform old systems, managed care went too far in its pursuit of efficiency at a time when the quality of health care was becoming a serious issue for patients and for public policy. Managed care began to be seen as pursuing profitability at the expense of quality.

A similar backlash, though for different reasons, has hit the National Health Service [NHS] in the United Kingdom. A once-revered institution, set up in 1948, the tax-funded NHS steadily became under-funded and under-resourced, as taxpayers began to reject the mid-20th century ethic of Tax-and-Spend. As waiting times for elective surgery lengthened from months to years, and hospital beds stayed empty because there were not enough registered nurses to provide the required standard of professional care, a major political backlash began to focus on the plight of patients as an electoral issue. The as-yet unanswered question is: can reform convert the monolithic NHS into a flexible, patient-centred health service?

While patients' rights were becoming a macro-political issue in the USA and now in Europe (The French Parliament recently passed a Patients Rights Act), patients' advocates were forming increasingly potent political coalitions and pressure groups on behalf of sufferers from specific infections (for example, AIDS) or chronic ailments. The latter range from leading causes of ill health and mortality such as heart disease, diabetes, and the many different types of cancer, to less widespread but increasingly prevalent conditions in our ageing society, like Alzheimer's disease, Parkinson's disease and multiple sclerosis.

The purpose of these advocacy groups and coalitions is clear: it is to assert their members' rights as patients. This movement, too, began in the United States but is now getting stronger in Europe (starting in the North, moving towards the South) and showing signs of spreading to Asian countries like Japan and South Korea.

Rights and responsibilities

So far so good. Patients' Rights is an important issue that needs to be encouraged and intensively pursued. But, as in most other aspects of life, the acquisition of rights goes hand in hand with the exercise of responsibility. Society in the mid-20th century long resisted this insight in relation to the then-prevailing right to pollute the environment while activists demanded the exercise of environmental responsibility. Nor has this resistance ceased today. Societal consensus is slow to emerge, but at least the gravity of the problem is now widely recognized.

That is not the case with patients' responsibilities for their own health. The use of the word patients is appropriate here. Although most of us may be healthy today, we shall all be patients sooner or later. Eventually most of us will be terminal patients. Only a lucky few will live healthily into their nineties, go to bed one night and fail to wake up the following morning. That is a wish-dream. Being a patient is reality.

Within that reality, there is no general agreement about what patients can reasonably be expected to do as citizens who are ultimately responsible for their own health.

The limits of responsibility

Few would dispute that patients should bear some of the responsibility for their state of health and make a genuine effort to maintain, improve, or at least not allow it to worsen for preventable reasons. Patients can reasonably be expected to :

• adopt lifestyles that promote and preserve good health
• comply with treatments advised or prescribed by their doctors
• become more knowledgeable about health, ill-health and health care.

On the other hand, society cannot in fairness hold patients responsible for at least four factors that tend to damage health, namely:

• genetic predisposition to disease(s)
• the ultimate impact of aging on health status and disability
• many neurological diseases like Parkinson's, dementia and multiple sclerosis
• the link between deprived socio-economic status and health.

The two sets of factors are in reality inter-linked. Healthy lifestyles, compliance with prescribed medical treatments, and striving to be an Informed Patient will only take you some of the way if you have a genetic or familial predisposition to a particular disease. Similarly, although we can do a great deal to promote good health in old age, not everyone will succeed in warding off chronic diseases. Avoiding Parkinson's disease, dementia or multiple sclerosis is not an act of willpower; indeed, medicine has as yet relatively few reliable clues to what causes the form of dementia known as Alzheimer's disease. Until more is known, exercising responsibility is neither a practical nor an ethical proposition for the unfortunate patient.

Studies have also demonstrated that there is a causative link between poverty, ill-health and mortality. Various reasons for social inequality in health have been advanced (Clarke 2001, ²), but opinions differ. In professional circles, the theme of Health and Social Status has become a political football that can be kicked at will in either direction. Those who believe in the doctrine of self-help will be inclined to deny a causative link. On the other hand, those whose priority is social equity (or more doctrinally, equality) will tend to over-emphasize the impact of socio-economic status on health. As a result, the rest of us get confused by impassioned volleys of theory and dogma.

A recent analysis of changes in the health status between 1986 and 1995 of 3,617 adults, representative of the non-institutionalized population of the USA, demonstrated (and cited many other studies to the same effect) that low socio-economic status and impaired health status are linked; and furthermore that known behavioural risk factors (like smoking, alcohol consumption, sedentary lifestyle and obesity) also rise as socio-economic status falls. Nevertheless, the results of the analysis

"....suggest that the higher prevalence of major health-risk behaviours among those in lower socio-economic strata is not the dominant mediating mechanism that can explain socio-economic disparities in health status among US adults" (Lantz, Lynch et al, 2001). ³

In other words, health-damaging behaviour and lifestyle are only partial, not total, explanations of the link between socio-economic and health status.

This conclusion, seemingly no more than common sense, has an important bearing on our view of The Responsible Patient. Unquestionably, the elimination (or at least reduction) of known behavioural risk factors is a high priority and one that the individual patient can and ought to shoulder. On the other hand, personal behaviour is not the whole story. Other, not always fully explored causes (including the four listed above) will collectively play an equally significant role in causing ill-health for which patients cannot be held individually responsible in more than a very limited sense.

If that is true of the general population, assigning personal responsibility to the elderly who are confined to hospitals and nursing homes is a near-impossibility. In the first-ever analysis in France of 7,145 persons aged 60+ and resident in institutions (the sample was representative of a French 'universe' of 500,000 such persons), the frequency of physical or mental incapacity was measured in relation to various tasks of everyday life. Some examples:

PERCENTAGE OF PERSONS [AGE 60+] IN INSTITUTIONS REQUIRING ASSISTANCE WITH EVERYDAY TASKS
(France 1998, rounded to nearest percentage point)

TASK	MEN	WOMEN
Dressing/undressing	43	50
Cutting up food	35	42
Toilet	31	40
Going out	37	60
Going to bed and rising	29	41
Hearing difficulties in conversation	35	41
Difficulties in speaking	18	15
Can't recall time of day - sometimes	42	52
Can't recall time of day - ever	20	28

Source: "Les incapacités des personnes de 60 ans et plus résidant en institution", S. Dufour-Keppelen, 2001 ⁴, DREES Etudes et Résultats 138, October 2001, Ministère de l'Emploi et de la Solidarité, Paris.
Note: the differences between men and women are largely caused by the fact that the average age of institutionalized women is higher than that of men.

These individuals with serious handicaps require expensive care, including health care; but it would be absurd to conclude that their handicaps are their own fault. That may be true of some, but impossible to prove and certainly untrue of the majority.

These are some of the limits of personal responsibility.

Penalties or incentives?

How, then, can we deal with the Irresponsible Patient?

"A girl aged 15 died after she was refused a liver transplant by doctors on the 'moral grounds' that she had experimented with drugs and her mother was a drug user, an enquiry was told yesterday." (Bowditch, The Times, 24th January 1997). ⁵

Also in the UK, some years ago, a surgeon was reported to have refused a second heart bypass to a patient who failed to give up smoking after the first. The surgeon claimed that a second operation would be a misuse of scarce resources and that the patient's behaviour was blatantly irresponsible.

Were these decisions right or wrong when, in effect, they condemn irresponsible patients to death?

The American Medical Association is explicit on this point when it comes to selecting patients for the transplantation of scarce organs whose supply from donors has fallen short of demand for many years. The Association's ethical rules specifically list five selection criteria as unacceptable:

Ability to pay, contribution of the patient to society, perceived obstacles to treatment (such as alcohol abuse...) the contribution of the patient to his or her medical condition...and past use of medical resources*.
(quoted by Neuberger et al, 1998 ⁶. - *present author's emphasis)

Thus, according to the AMA's rules, the fact that a patient has 'asked for trouble' by persisting to smoke even though there is a clearly established link between cigarette smoking and heart disease (and, for that matter, lung cancer and other diseases) should not make that patient ineligible for a scarce organ graft on behavioural grounds.

In other words, moral disapproval is not an acceptable justification for the denial of medical treatment. If it were, we would be straying into a minefield of explosive bioethics: do we withhold AIDS drugs from those whose sexual behaviour or drug abuse has been 'asking for trouble'? Do we punish the 'wilfully' obese who cannot keep their hands out of the chocolate box? And were we to do that, how do we then distinguish between those whose obesity is genetically conditioned (it used to be referred to as glandular) and those who lack the willpower to diet? Moreover, if they diet too hard, do we then punish them for anorexia? Evidently, that way lies a Medical Police State with insurers' spies and tribunals.

Financial penalties are less dramatic than the decision to treat or not to treat. They avoid the element of moral condemnation, but they imply other problems. Making you pay more for being a prolific user of medical services does not distinguish between genuine need and irresponsible abuse of health care, especially when it comes to penalizing the elderly for their age. Under the European concept of social 'solidarity' in health care, penalties for volume consumption would be regarded as ethically and electorally unacceptable. In the USA, too, it would be tantamount to rejecting the principles underlying both Medicare for the elderly and the handicapped, and Medicaid for the poorest and most deprived patients. These systems make many heavy users pay less, not more, than the full cost of medical treatment.

Financial incentives for 'responsible', health-promoting behaviour (for example, offering a 'no-claims bonus' on health insurance policies) has greater appeal. Motorists accept the principle and behave accordingly. Yet there is a fundamental difference between looking after your car and looking after your health. Keeping a seriously damaged car on the road is illegal. Seriously damaging your health is not. A 'no claims bonus' on health insurance could encourage holders to postpone or avoid medical treatment so as not to forfeit the bonus. This could be counter-productive for their health and, ultimately, for the insurer.

Yet, must we not draw the line somewhere if we are to encourage The Responsible Patient? Can we ignore financial incentives or dismiss them out of hand? Should we not at least experiment with pilot schemes to test whether financial incentives help patients on the way to greater personal responsibility or produce unintentional new forms of irresponsible perversity? Many reforms are rejected by public opinion on grounds that are rooted in general assumptions or 'received opinion'. Evidence for or against would be a better guide.

Health Policy and The Responsible Patient

There is an indissoluble link between information and responsibility. Being uninformed absolves us from responsibility. Fifty years ago, the link between cigarette smoking and lung cancer was unrecognized -- or at least unproven. The young cheerfully smoked cigarettes because Hollywood had made smoking a symbol of romance, either explicitly (Bette Davis and Paul Henreid famously in "Now Voyager"!) or by implication. Women who smoked in public were disparaged by the censorious as fast; nobody considered them to be medically irresponsible.

The spread of information has advanced in recent years. Patients now want to know more about health and ill-health, and obtaining information has become easier, particularly over the Internet and through Direct-to-Consumer Advertising. The latter, however, is still being strongly resisted outside the USA and New Zealand (see Advertising Prescription Drugs Direct to Patients -- link below).

Better information does not always lead to better health behaviour, but in today's society it is an indispensable pre-condition for the rise of The Responsible Patient. Information helps to motivate the preservation of health, the prevention of ill-health, and the control of risk factors. The gathering of information can be self-motivated, encouraged and spread by patients' groups and coalitions, or embodied in preventive health care through educational initiatives on the part of public or private sector health insurers and providers.

Preventive health care should be a leading plank of public policy as one of a number of means of motivating The Responsible Patient. Motivation is likely to be more effective in health policy than either penalties or financial incentives. If we are to be more motivated to look after our own health than we have been in the past, information and education in preventive personal health care are means to an end that most of us recognize as desirable - though difficult to achieve.

Public policy pays lip service to preventive health care, but in most countries it is reluctant to release adequate funds for research, experimentation, motivation, education and implementation. Progress is needed in all these aspects if we are to give The Responsible Patient of the future more to bite on than self-control and pious hopes.

Footnotes
1. Washington Post articles, July 26 to August 5, 2001; www.washingtonpost.com/onpolitics (Archives)
2. Clarke, A., "The Sociology of Health Care", Prentice Hall 2001
3. Lantz, P.M., Lynch, J.W. et al, "Socioeconomic disparities in health change in a longitudinal study of US adults: the role of health-risk behaviors", Social Science & Medicine 53, 29-40, 2001
4. Dufour-Keppelen, S.,"Les incapacités des personnes de 60 ans et plus résidant en institution", Direction de la Recherche, des Etudes, de l'Evaluation et des Statistiques [DREES], Etudes et Résultats No.138, October 2001, Ministère de l'Emploi et de la Solidarité, Paris.
5. Bowditch, G. (Scotland Correspondent), "Drugs girl 15, died after transplant was refused", The Times, 24th January 1997
6. Neuberger, J. et al, "Assessing priorities for the allocation of donor liver grafts: survey of public and clinicians", BMJ 317, 175, 18 July 1998

Related Links
Advertising Prescription Drugs Direct to Patients
Patient Power: How Informed Patients Are Changing The Face of Healthcare
Click here to read the other articles on Health Care Policy written by Heinz Redwood

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