Organ and Tissue Donation and Transplantation
A Legal Perspective
National Attorneys' Committee for Transplant Awareness, Inc.

Introduction

To the practicing attorney:

Suppose an elderly client, or any client, comes to you seeking advice on estate planning. Of course, you will advise her about the proper way to provide care for her dependents, both those now living and those to come. You also will advise her of the proper way to distribute her material assets such as her house, her savings, her furniture, etc. But you haven't fully addressed the question of proper disposal of assets until you address the topic of disposing of perhaps the most important material assets she has her organs and tissues. The conscientious attorney will, in a direct but sensitive manner, bring to her attention the possibility of donating her organs or tissues after she has died.
Organ and tissue donation often is not addressed during estate planning counselling but should be. Each year, many people die waiting for organ donations, and many others must undergo expensive and difficult medical procedures such as dialysis to remain alive.
By discussing with your clients the opportunity they have to make provisions for the future donation of their organs and tissue when they have passed on, the practicing attorney can make a tremendous difference in the lives of those in desperate need of organs and tissue. With this in mind, the following information is intended to assist attorneys counselling clients regarding organ and tissue donation.

Legislation Impacting Organ and Tissue Donation

Organ and tissue transplantation is subject to extensive regulation, both at the state and federal level. Generally, the regulations are considered a positive way to assure the equitable distribution of organs. But the laws and regulations also can make it more difficult to procure organs.
The following discussion provides an overview of current legislation affecting organ and tissue procurement and transplantation. It is only a summary of the law and should not be relied upon as a definitive statement of the law, especially as it applies in the different states. Attorneys are encouraged to familiarize themselves with the laws in their particular state, as well as recent changes to the federal laws, before advising clients regarding organ and tissue donation.

Federal Legislation

l. The Uniform Anatomical Gift Act of 1968

Prior to the drafting of the Uniform Anatomical Gift Act of 1968 (AGA), there were no Federal laws addressing organ and tissue donation, and the laws then on the books in the various states did not address the relevant issues relating to organ and tissue donation in anywhere near a complete manner. The AGA was designed to remedy this problem by providing a uniform legal environment across the United States for organ and tissue transplantation and encouraging the making of anatomical gifts.
Among other things, the AGA provides that a wallet-sized donor card, signed by a person over 18 and witnessed by two other adults, is a legal instrument permitting physicians to remove organs after death. The Uniform Anatomical Gift Act has been adopted in some form in all 50 states. (See Section on State Legislation.)

2. The National Organ Transplant Act

In 1984, the National Organ Transplant Act began in earnest the process of providing a comprehensive national health care policy regarding organ transplantation. In passing this legislation, Congress was reacting to the swift advances being made in transplantation technology. Among those advances was an 80 percent survival rate for kidney transplantees for the first year after transplantation. The development of cyclosporin had increased the survival rate of liver transplant patients from 35 to 70 percent for the first year. Of course, of great concern to the drafters of the National Organ Transplant Act was the shortage of available organs.
The Act was not primarily regulatory in nature. Rather, it provided funds for (1) grants to qualified organ procurement organizations (OPOs) and (2) the establish ment of an Organ Procurement and Transplantation Network (OPTN).
The OPTN was designed to assist OPOs in the distribution of organs that could not be used in the OPO's geographical area. The preexisting United Network for Organ Sharing (UNOS), a central registry for kidney patients, was subsequently designated as the OPTN.
The 1984 Act provided grants for the planning, establishment, initial operation and expansion of "qualified organ procurement organizations." To qualify for such funds, the OPO had to (1) be a nonprofit entity qualified to receive Medicare reimbursement for kidney procurement and (2) have established procedures to "obtain payment for non-renal organs provided to transplant centers. "
The only regulatory provision of the Act was a ban on the interstate sale of human organs. Little explanation for the inclusion history of the Act, except the note that she committee responsible for its inclusion believed that human body parts should not be viewed as commodities.
Perhaps the most significant accomplishment of the Act was the establishment of a 25-member "Task Force on Organ Transplantation" to study specific policy issues, including organ procurement and distribution. In May 1986 the Task Force published its landmark report on the medical, legal, social, ethical and economic aspects of organ procurement and transplantation. In its report, the Task Force noted the relatively small percentage of transplantable organs that were actually harvested for transplantation and the need to increase this supply.
The Task Force urged the development of organ transplant policies that, to quote from its report, promote "the value of social practices that enhance and strengthen altruism and our sense of community." To implement this goal, the Task Force recommended that hospitals adopt policies requiring that next of kin be asked to consider donating their deceased loved one's organs (i.e., "required request").

3. The Omnibus Budget Reconciliation Act of 1986

The "required request" recommendation of the Task Force found its way into law with the enactment of the Omnibus Budget Reconciliation ACT; of 1986 (42 USC Sec. 1320b-8). The Act requires all hospitals participating in Medicare or Medicaid to institute a "required request" policy.
Specifically, hospitals are required to comply with UNOS rules regarding allocation of procured organs, including having written protocols for identifying potential donors and "assur[ing] that families of potential donors are made aware of the option of organ and tissue donation and their option to decline."
One byproduct of the Act is that it has made organ donor cards, including the driver's license "check-off" system used in many states, less meaningful, since many hospitals are no longer willing to rely solely on the donor card/license as consent to procure the deceased's organs.

4. The Right to Refuse Medical Treatment: The Patient Self Determination Act of 1991

The Federal Patient Self Determination Act (PSDA), which went into effect December 1, 1991, is intended to encourage the use of advance directives such as living wills and POAs for Health Care. The impetus behind the Act was the right-to-die issue. The PSDA amends Federal Medicare and Medicaid statutes. It requires hospitals and other health care providers to maintain written policies and procedures regarding five issues. Among its provisions:

  1. The health care provider must provide written information regarding the individual's rights under state law to make decisions concerning medical care, including the right to formulate advance directives.
  2. Provider is to document in the individual's medical record whether the individual has executed an advance directive.
  3. Provider may not discriminate against an individual based on whether or not she has executed an advance directive.
  4. Provider must comply with state laws respecting advance directives.
  5. Provider must have a policy for providing for education for staff and the community on issues concerning advance directives.

State Legislation

l. State Anatomical Gift Acts

The Uniform Anatomical Gift Act (AGA) has now been adopted in some form or other by all 50 states. The state AGAs provide that a wallet-sized donor card (such as that found on the back of the driver's license in many states), signed by a person over 18 and witnessed by two other adults, is a legal instrument permitting physicians to remove organs after death.
Unfortunately, donor cards have not had a great effect in increasing the supply of organs for at least two reasons. First, many people don't bother to sign them. Second, although they are a legal document, most medical personnel are reluctant to rely solely upon the donor card for authorization to remove organs for transplantation purposes.

2. Required Request Laws

By 1988, 44 states had passed their own "required request" legislation. Typical required request laws, such as The Organ Donation Request Act of Illinois ("ODRA"), require hospital administrators, or their designee, under certain conditions, to request of the next of kin to consent to the gift of all or part of a decedent's body for transplantation or other purposes.
Illinois' ODRA enumerates six classes of "next of kin" who may be contacted to obtain consent for organ donation (in order or priority): spouse, adult children, parents, adult siblings, legal guardian or other authorized individual. This last category, which includes "any person authorized or under obligation to dispose of the body," and which could be used whenever the next of kin could not be located, has proven controversial. As a result, it is seldom relied upon.

3. State Laws Regarding Advance Care Directives

Several states have enacted laws in recent years to provide individuals with a greater say in their health care. As a general principle of these laws, competent adults have the right to refuse any type of medical treatment, including life sustaining treatment. Typical instruments for providing a mechanism for persons to exercise their fundamental right to control the decisions relating to their own medical care include Living Wills, Durable Powers of Attorney For Health Care and Advance Care Medical Directives.

Living Will

A Living Will is a legal document that provides direction as to one's medical care if one is incapacitated or otherwise unable to make decisions personally. Some states have statutes providing for Living Wills. A Living Will can be used to direct that one's organs or tissues be taken and donated if medically appropriate. If an individual chooses to execute a Living Will, he/she should take steps to make sure that medical personnel know It exists.

Durable Power Of Attorney For Health Care

With a Power of Attorney (POA), an individual can name someone who can exercise decision-making authority under specified circumstances on the individual's behalf. Fourteen states provide POAs specifically for health care decision making. With a POA form, one can direct that the person exercising the POA take steps to donate organs or tissues upon one's death. Again, for this option to be effective, the medical personnel need to be aware of its existence .
POAs, where recognized by law, can be used to grant an agent powers to make decisions regarding the individual's health care, and allow the individual to indicate the extent of life saving measures that may be taken under certain conditions.

Advance Care Medical Directive

The Advance Care Medical Directive (ACMD) is a hybrid of the Living Will and the POA. Under an ACMD, an individual, in consultation with his/her physician or other advisor(s), provides precise instructions for the type of care he does or does not want in a number of scenarios. The ACMD can be far more specific than Living Wills or POAs. Also, because they are generally made in consultation with one's physician, the physician knows of its existence.

4. Presumed Consent Laws

Eighteen states have enacted medical examiner's laws that presume consent of a decedent in certain limited circumstances. However, these laws are generally very limited in scope, and in some states are encountering opposition from those who believe they violate one's Constitutional right to privacy.

Afterword

The best way to assure that a person's organs and/or tissues will be transplanted after death to help those in need is still to let one's relatives know of the desire to donate. Very often, medical personnel rely on the wishes of the next of kin when deciding whether to harvest useful organs.
Two other actions can help others know of one's decision to donate: (1) Filling out an organ donor card (or the back of one's drivers license) and (2) executing a Living Will, a Durable Power of Attorney or an Advance Care Medical Directive informing the eventual medical care giver of the extent of care you wish to receive prior to death, and setting forth specific instructions for the disposition of the body after death, including donating one's organs. By taking these steps, an individual best assures herself that her desire to become an organ and/or tissue donor will be realized.

About NACTA

The need for organs and tissues far exceeds supply. Two factors conspire to reduce the potential supply of donor organs and tissue: lack of consent and the legal framework surrounding organ and tissue retrieval. To increase the supply of donor organs and tissues, the National Attorneys' Committee for Transplant Awareness (NACTA) has undertaken these tasks:

Legislation. Work toward changing existing state and federal legislation that inhibits the procurement of organs and tissues, and assist legislators in passing legislation designed to enhance organ and tissue procurement.

Volunteer assistance. Provide assistance, legal and otherwise, to organ transplant centers, hospitals and other entities involved in the effort to increase organ and tissue supply.

Public relations. Increase the legal community and public's awareness of issues relating to transplantation and donation.
For membership or other information, contact:

Jack Fassnacht, President
NACTA
19 South LaSalle Street, Suite 1300
Chicago, Illinois 60603
312/201-0777

NACTA wishes to acknowledge the Regional Organ Bank of Illinois for their generous help and support.

Prepared By:

The National Attorneys' Committee for Transplant Awareness

19 South LaSalle Street, Suite 1300
Chicago, Illinois 60603

1995 NACTA

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