UWC PhysiotherapyEthics workshop

13-12-10

Workshop programme (3 hours)

(Brief) introduction to ethics and human rights Ethics in research Tea Ethics in clinical practice Ethics in the curriculum

Introduction to ethics

Branch of philosophy Human character and conduct Ethos = “custom” or norms In the context of health professionals, ethics

deals with norms and values related to healthcare

Health professional ethics = critical evaluation of concepts, attitudes, beliefs and arguments that form the foundation for moral decision making in healthcare

Ethics = framework for helping to make good decisions in morally ambiguous situations

Good?Ambiguous?

Ethical principles

Beneficence (do good) Non-maleficence (do no harm) Autonomy (independence) Justice (fairness)

Human Rights

“No one gives us rights. We win them in struggle. They exist in our hearts before they exist on paper. Yet intellectual struggle is one of the most important areas of the battle for our rights. It is through concepts that we link our dreams to the acts of daily life”

Albie Sachs, 1990

Human Rights

HRs abuses create conditions of social / political unrest and sow seeds of violence

Only recognised with formation of UN Universal Declaration of Human Rights (1948) Displayed in all educational institutions

What are human rights?

Valid claims on society for Social and material resources Respect Tolerance

Limit State power over individuals They exist by virtue of a person's humanity Represent a fundamental need Bound to Duties and Responsibilities

When can human rights be restricted?

To secure the recognition and respect for the rights and freedoms of others

To meet the just requirements of morality, public order and the general welfare

In times of emergency, when there are threats to the vital interests of the nation

Restriction of human Rights

Permissible when they interfere with the rights of others

Syracuse principles (describe conditions) Restriction is provided for and carried out in

terms of the law There must be a legitimate objective It must be strictly necessary to achieve the

objective There must be no less restrictive means of

achieving the objective It is not arbitrary, unreasonable or discriminatory

Non-derogable human rights

What HRs cannot be restricted? Freedom from torture, slavery, servitude Right to a fair trial Freedom of thought

Ethics in research

Research (EBP) Ethical awareness

Henley & Frank (2006)

Ethical awareness

“I don't do research, so research ethics isn't relevant to me”

Ethics in research

“Physical therapy journals should standardize ethical protections and make documentation of compliance a prerequisite of publication”

Henley & Frank (2006, p.499)

What makes research ethical?

Seeking research ethics committee approval prior to carrying out research

Getting informed consent from participants Keeping information gathered about

participants confidential

Henley & Frank (2006)

Independent ethical committees

Recognition that ethical committees are necessary to protect participants

Arose after WW2 (Nuremburg) Values guiding ethical review:

Beneficence (seek to do good) Non-maleficence (seek to avoid harm) Autonomy (informed consent)

Anderson & Pickering (2008)

Beauchamp and Childress (2001)

Consent

Obtaining informed consent protects participants Usually requires a signed, information sheet:

Purpose of research Risks and benefits What data will be collected How the data will be used How data will be stored, and for how long Right to withdraw

Anderson & Pickering (2008)

Problems with consent

Patients who are incompetent to consent (e.g. severe brain injury, CVA)

Incompetence must be proven, never assumed “Would this person have agreed to participate if

they had been competent to give consent?” Family involvement Highly detailed information sheet Comprehensive ethical review

Anderson & Pickering (2008)

Consent and relationships

Consider the pool of participants and their relationship to the researcher/s e.g.

Client base in private practice Clinics in hospitals Students at university

Selection bias i.e. trust already established → increased participation

Power differentials i.e. how easy is it for potential participants to say “no”?

Confidentiality

Serves to restrict access to information gained from participants during research

Usually extends from the period of research and beyond (how long afterwards?)

If confidentiality cannot be offered, participants must be made aware

Objective, non-sensitive data (e.g. joint ROM, muscle strength) must still be anonymised

Anderson & Pickering (2008)

Confidentiality (cont.)

May be more relevant for qualitative data that is usually more sensitive than quantitative

Also consider others involved in the research process e.g. data capturers, research assistants, transcribers, etc.

The ideal circumstances often don't exist, and confidentiality is often difficult to maintain in reality

Ensuring well-being of participantsBeneficence and non-maleficence

Need to consider the harms and benefits of physiotherapy research

“But physiotherapy interventions don't have much potential to harm?”

Some do e.g. electrotherapy, spinal manipulations, needling

Potential to harm when considering innovative new treatments

Non-physical harm e.g. interviews that cause participants to remember traumatic incidents

Additional responsibilities

Information revealed that is unrelated to the research e.g.

Reported abuse → dilemma Supplementary medical information such as

high blood pressure → not part of the study, but still a duty of care exists

These considerations should also be included in the application for ethical review

Anderson & Pickering (2008)

Exploiting vulnerable people

The Declaration of Helsinki = guidelines when research involves people

Who is vulnerable? Those unable to protect their own interests The very young / old Freedom constrained (prisoners, soldiers, women) Those who are poor, uneducated, illiterate,

powerless, homeless, different In other words, the majority of the world's

population

How are people exploited?

Taking advantage of power differentials Achieving research ends without disclosing

risks to participants Research in which the risks to participants are

great and the benefits to researchers large Denying participants access to post-trial

treatments that were proven to be useful

Exploitation is a spectrum from mild to severe

How do you avoid exploitation?

Develop trust between researchers and subjects: Respecting dignity Creating accountability Ensuring fairness and transparency Commit to protecting participants

How do you avoid exploitation?

Give priority to trials that: Develop partnerships that enhance health systems Provide useful knowledge that benefits the country Balancing benefits and burdens Ensuring benefits flow into health settings Do not deflect human and material resources away

from systems in the host countries

Writing up research results

Determining authorship credit and order on student collaborations

Determining authorship

Until recently, few guidelines existed APA ethics committee (1983)

Students get first author on articles derived from their theses

Supervisors, at most, get second author if they made significant contributions

What is a significant contribution? Only discussed theses, not collaborative projects

Fine & Kurdek (1993)

Determining authorship (cont.)

APA Ethical Principles of Psychologists and Code of Conduct (1992): [Authors] take responsibility and credit only for work

they have performed or contributed to Principal authorship accurately reflects the relative

scientific or professional contributions of the individuals involved, regardless of their status. Minor contributions to the research or to the writing for publication are acknowledged

A student is listed as principal author on any multiple-authored article that is based primarily on the student's dissertation or thesis

Faculty-student collaboration

Dilemmas arise because the relationship is inherently unequal Faculty taking undeserved credit Students receiving undeserved credit

Falsely represent the students expertise “Published” status advantages student over others False expectations of performance

More experienced faculty are more likely to give students undeserved credit

Fine & Kurdek (1993)

Principles for determining authorship

Beneficence (help students further their careers when they have contributed to the work)

Justice (to treat students fairly by granting them what they rightfully deserve)

Parentalism (making decisions without consulting the student, depends on the context of the relationship)

Recommendations

Faculty and students are not meaningfully different in terms of autonomy, only expertise

Therefore students should participate in the decision making process

Fine & Kurdek (1993)

Process recommendations

Early on in the process, provide students with information related to:

How authorship decisions are made The nature of the contributions to the work The meaning of authorship and order Defining contribution levels as they relate to

credit

Assess the abilities of each contributor, the tasks and supervision required, and expectations

Process recommendations (cont.)

Discuss and agree on the tasks, contribution and efforts required to warrant authorship

Use signed informed consent forms to clarify the terms of the agreement

Consider modifying the original agreement if the work needs substantial changes after review

Outcome recommendations

The student should make a professional contribution that is creative and intellectual, that is integral to completing the work, including:

Development of the design Integrating theoretical perspectives Developing new conceptual models Designing assessments Contributing to data analysis decision making Interpreting results

Completion of 1 or 2 of the above is not necessarily sufficient (see Winston's weighting schema)

Outcome recommendations (cont.)

Decisions should be based on the scholarly importance of the contribution, not time and effort

Should not be affected by financial considerations or employment status

Students and supervisors should consult with colleagues and peers

If dilemmas arise, take the matter to an independent third party process e.g. at an institutional level

Tasks not considered for authorship credit

Data capture Data analysis specified by the supervisor Typing

References

American Psychological Association Ethics Committee. (1983, February). Authorship guidelines for dissertation supervision. Washington, DC: Author

Anderson, L. (2008). Ethical review of physiotherapy research. New Zealand Journal of Physiotherapy, 36(3), 138-143

Ethical principles of psychologists and code of conduct. (1992). American Psychologist, 47, 1597-1611

Fine, M. A., & Kurdek, L. A. (1993). Reflections on Determining Authorship Credit and Authorship Order on Faculty-Student Collaborations. American Psychologist, 48(11), 1141-1147

Henley L, Frank D (2006) Reporting Ethical Protections in Physical Therapy Research. Physical Therapy 86(4); 499-509

Winston, R. B., Jr. (1985). A suggested procedure for determining order of authorship in research publications. Journal of Counseling and Development, 63, 515-518.

Ethics in clinical practice

Ethical issues in clinical practice Frameworks and policies Privacy and confidentiality Patient rights

Ethical issues in clinical practice

Compliance: correct action is clear and you just need to have the integrity to do the right thing

Disagreements: individuals disagree about what the “right” thing to do, is

Vagueness: when it isn't clear what the “right” thing is e.g. what is “quality care”?

Conflict: when two or more moral rationales are in conflict with each other

South African Constitution

The Republic of South Africa is one, sovereign, democratic state founded on the following values:

Human dignity, the achievement of equality and the advancement of human rights and freedoms

Chapter 1, Founding Provisions, SA constitution

Bill of Rights

This Bill of Rights is a cornerstone of democracy in South Africa. It enshrines the rights of all people in our country and affirms the democratic values of human dignity, equality and freedom

The state must respect, protect, promote and fulfil the rights in the Bill of Rights

The rights in the Bill of Rights are subject to limitations

Chapter 2, Bill of Rights, SA constitution

Health and Human RightsSouth African constitution (Section 27)

Everyone has the right to have access to:Health care services (incl. reproductive health care)

Sufficient food and water

Social security (social assistance)

Emergency medical treatment

The State must take reasonable...measures, within it's available resources, to achieve the progressive realisation of each of these rights

Health and Human RightsProblems with the Constitution

Too broad (e.g. “within available resources”)

Too vague to implement (e.g. what does “sufficient” mean)

Does not reflect the reality of our society

Does not consider time and resource constraints

Health and Human Rights

The Constitution does not claim to be the solution to problems

It serves as an indication of where we strive to be as a society

The State must report to Chapter 9 Institutions (e.g. Human Rights Commission) on the “progress” being made towards the realisation of these rights

HPCSA guidelines

General guidelines are aspirational, they formulate the most honourable ideals the health professional should aspire to

More specific guidelines (duties and rules) derive from general guidelines, and give more precise direction for action

It is impossible to develop a complete set of rules applicable to all situations

Which is why ethical reasoning is important

SASP code of conduct

Articulates the moral understanding of the profession

It enables co-operation and fair competition with restraints on self-interest

Supports responsible practitioners, safeguards against unscrupulous employers

Official statement of the profession, committing to promoting public good / minimising harm

Promotes public trust / social contract

Patient rightsEvery patient has the right to...

A healthy and safe environment

Participation in decision-making

Access to health care

Knowledge of ones health insurance/medical aid scheme

Choice of health services

Be treated by a named health care provider

Confidentiality and privacy

Patient rights (cont)Every patient has the right to...

Informed consent

Refusal of treatment

Be referred for a second opinion

Continuity of care

Complain about health services

Respect

The over-riding principle of respect should govern every action you take

All other principles will have a component that deals with respect

You will always act in the best interests of your patient, and place them first

Confidentiality and privacy

You may only disclose information about a patient if they give you explicit consent to discuss it

Only a court order can bypass this requirement

Does this mean you can't discuss patients?

What are some of the problems with confidentiality?

No personally identifiable information

Informed consent

Requires health professionals to respect the patients ability to consent (or refuse) to treatment, after carefully explaining risks, benefits and costs

Two components of informed consent:Inform the patient (what does this mean?)

Get consent (or refusal)

Patient must be competent to give consent

Informed consent

Various standards exist:Medical: agreed by health professionals

Reasonable: what a reasonable person wants

Diagnostic: dialogue between provider and patient

Requires skill in communication:Use of language

Tone

When / where / how information is given

Take ethnicity, culture, religion into account

Informed consent

A patient should not be coerced / manipulated into giving consent

So, you may not use subtle threats, emotional manipulation, “guidance”

Don't withhold information, exaggerate, understate or use pretence

Respect the patient's decision

When the condition changes, consent becomes null i.e. you must obtain consent again

Informed consent

Every patient has the right to be provided with all the information they require in order to make an informed decision about their own health

Includes information about:

Procedures / interventions to be performed

Risks of treatment

Cost of treatment

You must offer the information, not wait for patients to ask

Consent should be written in the notes

Autonomy (decision making)

Every patient has the right to participate in decisions that relate to their bodies / health

“Work with patients”

This includes the right to refuse treatment

Unless that refusal places other people at risk

Duties to patients

Act in the best interests of the patient / client

Respect the privacy and dignity of patients

Provide patients with the information they need to make informed decisions

Recognising patient's rights for their information to be kept confidential

Respect the right of patient's to participate in their own healthcare

Duties to patients (cont.)

To be impartial and just

To promote access to healthcare

To avoid potential conflicts of interest

Duties to colleagues

To act in the patient's best interest when making referrals

Treat a colleagues' patients the same way you would treat your own

Work with and respect other health professionals

Do not make a patient doubt a colleagues' knowledge or skill

Duties to patients of colleagues

Act quickly to protect patients from risk if you believe a colleague to be impaired

Report rights violations and seek redress if you believe violations are taking place

Duties to yourself

Maintain and improve the standard of your own performance

Participate in educational activities related to your practice

Acknowledge the limitations or your knowledge and competence

Observe and keep up to date with laws affecting your practice

Maintain a professional practice / service

Duties to society

Treat all living things with respect

Deal responsibly with distributing scarce resources / refrain from waste

Consider ethical issues and human rights in health policy development

Duties to the profession

Report the misconduct of others

Report human rights violations and seek redress

Promote access to healthcare. If you cannot provide a service, refer the patient to a colleague

Duties to the environment

Recognise that natural resources are scarce, guard against their exploitation

Ensure that medical waste is disposed of legally, in an environmentally friendly manner