ESTATE PLANNING CAN INCLUDE PROVISIONS FOR ORGAN DONATION

By Ken Trachy
Special Projects

Life Alliance
Organ Recovery Agency

University of Miami Miller School of Medicine

The continuing and critical shortage of organs and tissue is the overriding deterrent to the more widespread availability of transplantation in the U.S., resulting in a relentless rise in the national waiting list, and thousands of deaths each year. The persistent shortage presents a paradox, however, as the vast majority of adults (97%) in the U.S. express support for the concept of organ donation and a large majority (78%) report they are likely to donate their own organs and tissue when they die, according to a 2005 Gallup survey.Furthermore, nine out of 10 persons polled believe that donation engenders something positive after a death, and are likely to donate the organs and tissue of a family member, if that person had positively discussed donation.

However, because of a lack of available and accurate information, including requirements of how to register to be a donor, and myths and misperceptions, more than 50% of individuals have failed to document their decision to be an organ donor either by not joining their state registry or by not signing a donor card. In addition, the majority of individuals have not discussed donation with family members.

Education is essential to resolving the donor shortage. Lawyers can contribute remarkably by including donation in the estate planning process. They can provide encouragement and opportunities for clients to make and document informed decisions to designate themselves as an organ, eye,and tissue donor, and to clarify appropriate circumstances for use of life support systems at end-of-life.

Phenomenal advancements in transplantation, especially surgical skills and immunosuppressive drugs, have resulted in a steadily increasing number of men, women, and children with life-threatening diseases each year successfully receiving new livers, kidneys, lungs, hearts, pancreases, intestines, and multi-organ transplants. Last year almost 29.000 transplants were performed in the U.S.

These recipients routinely experience the profound transition from near-death and desperation to revitalized health and renewed hope in their lives. Their life expectancies are dramatically increased. Only recently could diabetics receive pancreas transplants and be free of insulin. Children who depended on intravenous feedings because of digestive disease are now able to receive a new intestine and live normal lives. Kidney transplants are routinely successful and free individuals from dialysis treatments.

An Ever-Increasing Demand

Despite being a miracle of modern medicine, transplantation is tragically unavailable to a startling number of Americans. The national list of patients waiting for vital organs—now more than 113,000—grows each year inexorably in dramatic counterpoint to the phenomenal advancements in transplant technology.In the last ten years, there has been a more than 90% increase in the number of individuals waiting for organs, yet only a 57% increase in the number of organ donors. Instead of returning to productive lives with their families and in the workplace, many wait indefinitely, or die. Tens of thousands more individuals wait for tissue to restore sight, improve mobility and independence, and toregain health through eye, bone, skin and other tissue transplants

Twenty people die on average every day while waiting for an organ and more than 6,000lives are lost every year in the US.And every day, 132 individuals with organ failure are added to the list—one every 11minutes.

Most organs for transplantation come from deceased individuals who experience sudden and traumatic head injury—car accidents, homicides, drowning, brain hemorrhages—and are subsequently declared brain dead by two physicians in the hospital, after all efforts to save their lives have been exhausted, which includes use of a mechanical ventilator to assist in breathing. Neither of the two physicians is allowed to be members of the organ recovery and transplant teams.

Florida’s Statutes Section 382.085 provides that brain death is the irreversible cessation of all brain and brain stem functions and is death of the individual. Brain death is a legal and moral warrant for withdrawing mechanical ventilation whether or not organs are being recovered. Once death is declared and consent for donation is given, bodily functions—respiration and heartbeat—and organ viability are maintained by mechanical ventilation and medications for a brief period, making it possible to accomplish donation.

Although the large majority of organ donors have suffered brain death, donation after cardiac death (DCD) is also medically possible for patients with a non-recoverable and irreversible brain or spinal cord injury or disease, such as end-stage pulmonary disease, resulting in dependence on a ventilator, but not fulfilling brain death criteria. For families in these circumstances, who in consultation with their physician understand that further treatment is deemed futile and decide to withdraw mechanical ventilation from their loved one and let cardiac death occur naturally, donation is possible.

Eye, bone, skin tissue, and heart valves, unlike vital organs, are viable for transplantation from individuals 12 to 24 hours after cardiac death. Tissue is routinely recovered in hospitals, funeral homes, and medical examiners’ offices, as well as in the recovery of organs from brain dead donors.One tissue donor can enhance the lives of more than 250 individuals.

Legal Framework

The Uniform Anatomical Gift Act, proposed in 1968 and later adopted by all 50 states, established an adult individual’s right to donate organs for transplantation, as well as the whole body for research and educational purposes. The original act created the uniform donor card to legally document an individual’s donation decision. In addition, an anatomical gift can be executed through a driver license, a living will, will, or an advance health care directive. If an individual executes an agreement regarding an anatomical gift, the document is legally sufficient informed consent and is legally binding. The original Gift Act includes language stating that an anatomical gift made by an adult is “irrevocable and does not require the consent or concurrence of any person after the donors death”.

The Florida legislature reasserted an individual’s right to make an autonomous legal decision to donate organs and tissue by adopting a revised Anatomical Gift Act in 2009 (SB 766). The law stipulates that when a gift is made by an individual, “the document—donor card, living will or will—or entry in the donor registry– is legally sufficient evidence of an individual’s informed consent to donate an anatomical gift.” It further states that “A family member, guardian ad litem, or health care surrogate may not modify, deny, or prevent a donor’s wish to make a gift after the donor’s death.”The law also provided for the establishment of the Joshua Abbot Organ and Tissue Donor Registry, which was launched in July 2009. The electronic registry assures that recovery agencies have timely access to registration records, and that individuals who designate themselves an organ donor will have their wishes honored based on medical eligibility. In addition,federal legislation—called Required Request— mandates the legal next-of-kin of every person who dies in a hospital must be offered the option of organ and tissue donation, depending on medical eligibility, irrespective of the deceased having made a donor designation.

Life Alliance, one of the nation’s 58 federally designated organ recovery agencies, is certified and regulated by the United Network for Organ Sharing, the non-profit organization that manages the national organ sharing system. Life Alliance, in close collaboration with all hospitals, is responsible for coordinating the organ recovery process throughout South Florida. Recognizing the rights of the individual to govern the disposition of his/her body, including the choice to be a donor, Life Alliance and other organ recovery agencies across the country are acting on the autonomous wishes of the individual who has made a legal donor designation.

When a medically eligible patient dies in a hospital and has a donor designation, organ recovery and hospital staff inform the family of the steps necessary to carry out the loved one’s wishes to be an organ donor and ask for the donor’s medical and social history. Similarly, when the patient has not made a donor designation, the family is asked to authorize the steps necessary to accomplish donation, and to provide the donor’s medical and social history. Irrespective of the family’s donation decision, organ recovery and hospital staff respects the wishes and feelings of the families of deceased individuals, and provides them with emotional and spiritual support.

Offering dying patients or their families the option of organ donation is understood to be a natural part of the dying and death process, and is essential and dignified end-of-life care once the death has occurred.For families who donate, the experience provides them with a measure of solace, an opportunity to honor their loved one, and the knowledge that they and their loved one have made an immeasurable difference in the lives of strangers who will live longer and better lives because of their generosity.

Lawyers have an important role to play

Increasing the number of organs for transplantation requires a more knowledgeable, committed and proactive American public. It requires actions to conform to expressed attitudes about donation.It is imperative to disseminate accurate information, to dispel myths and misperceptions, to allay unfounded fears, and to emphasize the importance of every individual making an informed and intentional decision about donation.

It is also desirable for individuals who wish to be organ donors to include the language of the uniform donor card as a provision of living wills and advance health care directives. The document should state not only which specific treatments are not wanted at end-of-life (mechanical ventilation, CPR, etc.) but also thatthey want to prioritize organ donation over routine end-of-life care.

Clarifying and documenting end-of-life decisions are important to resolve the potential conflict that arises when a person is a medically eligible DCD donor with an organ donor designation in place and also has an advance directive health care directive that states the individual does not wish to have life prolonged by the administration of life support systems. Once the family or other legal decision maker has made the decision for the withdrawal of life support systems from the patient, the local organ recovery agency will approach the family or decision maker for consent for donation, which requires that life support systems are maintained to assure organ viability while evaluation and other arrangements are made for the recovery of organs.

Lawyers who practice estate planning can facilitate and enhance the educational process by sharing this information andencouraging clients who choose to be an organ and tissue donor to document their decision by joining Florida’s Joshua Abbot Organ and Tissue Donor Registry and by including appropriate documentation and language in their advanced healthcare directiveThe trust implicit in the lawyer-client relationship is likely to engender discussion, reflection, and intelligent decision-making.

Everyone has an interest in assuring timely access to transplantable organs, and in increasing their availability. To participate in donation is to demonstrate compassion and a sense of shared community. The sickest of us depend on this generosity. It is a need, unpredictably, that each of us may have for our families or for ourselves.

To join and learn more about the Joshua Abbot Organ/Tissue Donor Registry, visit www.DonateLifeFlorida.org or for questions contact Ken Trachy at 305-301-3480 or ktrachy@med.miami.edu.