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The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November 7, 2014

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Page 1: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

The Ethical Challenges in Organ Donation and

Transplantation

8th Annual Bioethics and Palliative Care Conference

Margaret Allee, RN, MS, MSN, JD

November 7, 2014

Page 2: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Disclosure Slide OBTAIN FROM OHSU

Margaret Allee, RN, MS, MSN, JD has no relevant financial relationships to disclose that would present a conflict of interest

Page 3: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Objectives

Participants will be able to: Identify the ethical principles associated

with organ donation/transplantation Describe acceptable and unacceptable

criteria for the allocation of scarce resources

Explain why the application of ethical principles is critical in the allocation of organs

Page 4: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

The goal of saving an individual has to be balanced against concern for the social good and the wish to preserve such basic values as:

- justice- fairness- human dignity- bodily integrity

Page 5: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Organ transplantation depends on its very existence on a unique trust between society and physicians, and on the willingness of ordinary people to share their organs and tissue.

Page 6: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Transplantation is steeped in:

Religions and cultural values of atruism

Sacrifice and generosity Political notions of: community

reciprocityshared risksocial solidarity

But there are also deep contradictions

Page 7: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

“Organ transplantation is both lifesaving and death-ridden. The so-called gift of life most often demands a counter gift, a ‘gift of death’ from the donor or his or her next of kin.”

Renée FoxBioethisist

Page 8: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Behind the death-defying scenes of

transplantation is a life and death

struggle for scarce organs.

Page 9: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

The Gap between Ideology and Practice has widened: Tissues and organs can be bought and

sold in some parts of the world Proposals have been made to allow

financial compensation for donors or their families

There are inequities in access to transplant medicine and in regional distribution of organs

Living donation is at the forefront, but not without risk and unnecessary deaths

Page 10: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

WHAT ARE SOME OF THE PRESSING ETHICAL ISSUES?

Organ Availability Patient Access Prisoners and Transplant Organ Trafficking Medical Errors and Truth Telling Therapeutic Cloning Allocation of Scarce Resources

Page 11: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

BOTTOM LINE

There are not enough organs available to meet the current demand

And there is controversy in how the limited number of organs should be allocated.

Page 12: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Patients die - -

Ethical issues arise out of

desperation to prevent death

occurring

Page 13: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

How do we Allocate Scarce Resources

Who shall live? Who shall decide?

Page 14: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Definition of Scarce Resources

Resources or “the use of resources that, because of naturally limited supply or economic constraints, are not readily available to all who need them.”

Council on Ethical & Judicial AffairsAmerican Medical Association

Page 15: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Traditional medical practice has its foundation in the principles of doing no harm, acting for the good of patients and caring for all of those who come in need

The ethical practice of allocation of scarce resources, may require the thoughtful practitioner to violate these central moral tenets

Page 16: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Acceptable Criteria for Resource Allocation

1. The likelihood of benefit to the patient2. The impact of treatment in improving

the quality of the patient’s life3. The duration of benefit4. The urgency of the patient’s condition

(i.e.: how close is the patient to death)

5. The amount of resources required for successful treatment

Page 17: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Each of these five criteria serve to maximize the following three goals of medical treatment:

1. Number of lives saved

2. Number of years of life saved

3. Improvement in quality of life

Page 18: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Likelihood of BenefitGiving priority to patients with a greater likelihood of benefiting from treatment is necessary for any efficient use of medical resources - Maximizes number of lives saved as well as length and quality of life - Care that has a low likelihood of benefit

must be distinguished from care that is truly

futile (care that cannot be expected to have

any physiologic benefit)

Page 19: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Change in Quality of Life Benefit to patient will be

maximized if treatment is provided to those who will have the greatest improvement in quality of life

Deciding on a standard definition is dependent on patient individual values

Focus on functional status allows for objective measure of QOL

Page 20: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Duration of BenefitThe length of time a patient benefits from treatment can, in certain situations, be an appropriate consideration in maximizing overall benefit

- Limited to life expectancy but not an

absolute consideration- Based on patient’s own medical

historyand prognosis, not aggregate

statistics ormembership in a group

Page 21: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Urgency of NeedPrioritizing patients according to how long they can survive without treatment can help achieve the goal of maximizing the number of lives saved, depending on type of resource involved - Important consideration but must be tempered

with other criterion - Preventing death (by treating urgency first)

should generally be given priority in

allocation decisions- But not if the life saved would be

of extremely poor quality or extremely short

duration

Page 22: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Amount of Resources Requested

On occasion - assigning higher priority to patients who will need less of a scarce resource maximizes the number of lives saved

Page 23: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Inappropriate Criteria for Resource Allocation

Often used, but considered ethically unacceptable

1. Ability to pay2. Contribution of the patient to society

(social worth)3. Perceived obstacles to treatment4. Contribution of the patient to his or her own medical condition5. Past use of resources

Page 24: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Allocation Mechanisms Should Be

- Objective- Flexible- Consistent

Page 25: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Objectivity

The need for the decision makers not to be personally involved with patients competing for a scarce resource

Page 26: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Flexibility

Requires decision makers to weigh carefully all relevant facts of a case, and not reflexively apply a blanket rule, such as an age cap to all cases

Page 27: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Consistency

Requires decision makers to consider the same (appropriate) criteria, interpreted in the same way, to ensure that all decisions are fair to the patients involved

Page 28: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November
Page 29: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Three Basic Ethical Concepts in the Allocation of Scarce Resources

- Utility

- Justice

-Autonomy

Page 30: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Utility

Utility holds that an action or practice tends to be right if it results in as much or more aggregate good than any alternative action or practice

- It requires calculating the net benefit of the use of a resource for each person affected and summing the benefit over the number of total persons affected

Page 31: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Utility ( Continued )

In rationing scarce medical resources, it is morally imperative to consider medical utility, understood as maximization of the welfare of patients in need of treatment

Page 32: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

JusticeIssues of allocation are, at their core, issues of justice and distributive justice- Being just is consistent with the principles of Moral Right

Equality

Fairness

Page 33: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Justice ( Continued )

Is a primary concept for the allocation of scarce resources - A concept of fairness, proportionate to

needs, to ensure that all are treated equally - It refers to fairness in the distribution of

benefits and burdens of an allocationprogram

- But - What is fair?

Page 34: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Justice ( Continued )

“For decisions to be just the process by which the decision is made must be a just one.”

Tony HopeJournal of Medical Ethics, 2001, 27:179

Page 35: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Equal access to care is based on the concepts of equality and justice, wherein all persons must be able to compete on an equal footing for the opportunities that society offers, however, no rights are absolute

Equal Access to Care

Page 36: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

These rights are conditioned by the presumptions that we, as individuals, have no control over our genetic inheritance, over our susceptibility to disease, or to the way our organs function or the body reacts to certain chemicals and conditions

Page 37: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Autonomy

Autonomy is seen as both a moral principle and a psychological state

- Persons want to make their own decisions and are, thus, autonomous

Page 38: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

If a resource, such as an organ, becomes available and the person is best-qualified by the principles of utility and justice to receive the resource (organ), and they decide to turn the opportunity down for whatever reason, they shall have exercised the principle of autonomy

Autonomy ( Continued )

Page 39: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Clinical Considerations in Conflict

The concepts of Utility, Justice and Autonomy are not without

conflict

Page 40: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Patient survival

Survival of the resource

Psychological state of the patient

Quality of life

Age

Availability of alternative treatments

Utility Must Consider

Page 41: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

Medical urgency of the patient

Likelihood of finding or accessing the resource in the future

Waiting times

First versus repeat resource utilization

Efficacy of the use of the resource

Fairness and Justice Must Consider

Page 42: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

The issue of the right of the individual to refuse the resource

Free exchanges among autonomousindividuals

Allocation of the resource - such as through directed donation

The voluntary behaviors of potential recipients

Autonomy Must Consider

Page 43: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November

In Summary Decisions should respect individuality Ethically appropriate criteria must be

used Decision making must be objective,

flexible and consistent Patients need to be informed of

criteria Patients need realistic expectations

Page 44: The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November