Wednesday, April 27, 2011

Patients not Consumers Debate - the Nuances of Language

The “patients – not consumers” debate has started again with an article by NY Times columnist Paul Krugman, Patients are Not Consumers.

Paul Krugman is right that medical care is very different from any other consumer good and it is fundamentally true that choice in medical care is different from other products we buy as consumers. But let us remember that the use of the word “consumer” came from human rights advocates working with the disabled. So it is important to understand this war of words in an historical context of human rights for the disabled. Disabled persons may be needing care and medical attention but still be healthy in other aspects of their lives and needing autonomy to make responsible choices for their own lives.

Originally every one used the word patient but as socialized welfare took over many people’s medical care there came into the decision making process the use of tertiary decision makers – guardians, case management professionals, risk management managers and social workers. Social workers also used another word “client” which means someone receiving services. Often persons who used the word “patient” were emphasizing that the patient didn’t know what was best for him/her and so instead the “professionals” should make all the decisions. This is especially true for those who are disabled physically, cognitively or mentally. Thus the disabled were stripped of their rights as human beings while others made decisions on the “patient’s behalf”. All that was needed to strip a patient of their right to choice in care or informed choice in treatment was to claim that someone in the “administration” or “management” knew better than the patient what was good for him/her.

Thus the consumer movement in health care - the disabled person as a consumer has the right to choice in how to spend their health care dollars. The consumer meant that the disabled person was purchasing medical care and thus had rights that could not be subverted by hospital management or managed care providers. Thus the word “consumer” allowed the patient choice and demanded “informed choice” be applied to medical care.

Those who wished to control the patient’s choices within medicine – funneling patients to programs and treatments that maximize profits, wanted to use the word “patient” as a patient was a person without power and was required to obey the hierarchy of the managed care system. Anyone who really believes that doctors these days make decisions based on what is best for the patient, is clearly not aware of the daily pressures on doctors to do what management tells them to do. Thus a “patient” is someone so injured, diseased, damaged that they can’t make choices for themselves. A consumer is someone empowered to make choices and with money to spend and thus a financial stake in the decision making process.

I agree with the sentiments of the reporter Paul Krugman but he was apparently unaware that human rights advocates for the disabled have been using the word “consumer” to empower disabled persons in their choices for their lives and their health care choices.

The Independent Living Movement is facing a takeover of people’s lives where they live in managed housing which is controlled and all decisions made by management – case management required and no “informed choice” option. Independent Living principles affirm the rights of human persons to make informed choices in their lives. Those asserting “patient” as the correct language see all elderly as managed “patients” needing case management so decisions are made with no discussion and no notice to the person involved. Those who have suffered elder abuse in such managed care facilities would insist that they were “consumers” and human beings not just damaged patients needing to be told what was best for them.

We are all disabled when seeking emergency or hospital care - thus when we need the care we are a person who needs to be respected for our choices. A woman may wish as a consumer to chose to get pregnant, refuse experimental treatment, chose a more natural pain control remedy, or chose to not have invasive end of life care. All these choices could be subverted by a tertiary decision maker.

10 Principles of Independent Living
Source: Statewide Independent Living Council of Illinois

1. Civil Rights – equal rights and opportunities for all; no segregation by disability type or stereotype.
2. Consumerism – a person ("consumer" or "customer") using or buying a service or product decides what is best for him/herself.
3. De-institutionalization – no person should be institutionalized (formally by a building, program, or family) on the basis of a disability.
4. De-medicalization – individuals with disabilities are not "sick," as prescribed by the assumption of the medical model and so not require help from certified medical professionals for daily living.
5. Self-help – people learn and grow from discussing their needs, concerns, and issues with people who have had similar experiences; "professionals" are not the source of the help provided.
6. Advocacy – systemic, systematic, long-term, and community-wide change activities are needed to ensure that people with disabilities benefit from all the society has to offer.
7. Barrier-removal – in order for civil rights, consumerism, de-institutionalization, de-medicalization, and self-help to occur, architectural, communication and attitudinal barriers must be removed.
8. Consumer control – the organizations best suited to support and assist individuals with disabilities are governed, managed, staffed, and operated by individuals with disabilities.
9. Peer role models – leadership for independent living and disability rights is vested in individuals with disabilities (not parents, service providers or other representatives).
10. Cross-disability – activities designed to achieve the first five principles must be cross-disability in approach, meaning that the work to be done must be carried out by people with different types of disabilities for the benefit of all persons with disabilities.

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