The Organ Donors’ Bill of Rights

[Clark]

http://www.newint.org/features/web-exclusive/2010/09/22/organ-donors/

The Organ Donors’ Bill of Rights
Nancy Scheper-Hughes is Chancellor’s Professor of medical anthropology at the University of California, Berkeley, and director of Organs Watch. She advises the WHO, the UN Anti-Trafficking Office, and TTS, the Transplant Society on the hidden injuries of transplant trafficking. Here, she shares her thoughts on this month’s Argument: ‘Is it ever right to buy or sell human organs?’

To help combat the illegal trade in body parts, I have written a Bill of Rights which has been distributed in several languages in villages and urban slums which are being targeted by organs brokers.

Article 1. All humans have the right to bodily integrity. Organs are every person’s birthright, their bodily patrimony. Humans both are and have a body. (A post-Cartesian notion of the person is not ‘cogito ergo sum’ but rather ‘I am embodied, therefore I am’.)

Article 2. There are no ‘spare’ kidneys, lungs, or part-livers. To share these human parts is a sacrifice not to be normalized, routinized, or taken lightly.

Article 3. Although living donation is honorable and ethical, it is never to be presented by the recipient or his surgeons as an obligation.

Article 4. Green donation (deceased donors) should be the default system. Red donation (living donors) should be viewed as the exception, not the rule.

Article 5. Acknowledge that vulnerable populations – young people, the unemployed, prisoners, the mentally ill, the mentally deficient, guest workers, the uninsured, economic and political refugees, those in debt – are exploitable and that the ‘choice’ to sell a kidney is often coerced.

Article 6. Recognize the role of relative power/powerlessness based on gender, race, class, education, citizenship, nationality in organ selling, transplant tour, internet brokering schemes.

Article 7. Establish a principle of solidarity with the weak, the frail, the sick and the economically and existentially shaken.

Article 8. Recognize that the medical, psychological, social and political consequences of kidney selling, like the scars themselves, are often kept hidden from view.

Article 9. Revise hospital protocol to increase surveillance of living donation to include a ‘donor’s doula’, a guardian-advocate at the bedside, independent of and un-beholding to, or financially dependent on the transplant team, to represent the living donor during screening, surgery, and post-surgical follow up.

Article 10. No living organ donation from the unemployed or medically uninsured.

If you’re willing to ask a living person, a total stranger, to rescue you from the queue of those patiently waiting for a deceased donor organ, or from the onus of asking a relative or close friend to rescue you from dialysis, be aware that you entering a moral, social, ethical, and political grey zone. You’re putting the seller and yourself at risk. Be aware of the collateral damage to the families of kidney sellers and to the economically battered communities where kidney brokering and selling has destroyed trust, broken homes, eroded agricultural, fishing, construction and other work opportunities. In some hard-hit villages and slums from Latin America to Eastern Europe to Asia, the obligation to sell a kidney to save the family is being passed down from the father to his wife to oldest sons and even to underage children whose bodies are now seen as the family piggy-bank.

Despite what you may have heard from some surgeons or from transplant brokers, the kidney is not a ‘spare’ organ. If you were able, as I have been, to talk to kidney sellers the world over, you would find that even years after the operation, the sellers are still suffering from its effects on their bodies, minds, social status, intimate relations, and working lives. Medical journals do not report on the invisible and long-term consequences of kidney selling, which include: decreased physical and mental well-being, chronic pain, depression and suicide, self-hatred, distorted body image (‘half-man’ syndrome), anger, social rejection, isolation, physical abuse, battering, and forced exile from their native communities. There are new syndromes that don’t appear in medical textbooks: phantom kidneys, kidney regret, kidney-impotence, bodily evacuation (the body without organs), chronic pain at the site of the surgical scar, empty burning space, and the attribution of all subsequent troubles to the ‘missing kidney’. Economically, kidney sellers are worse off a year after selling their kidney. Because most kidney sellers are poorly educated and are unskilled labourers who rely on the strength of their bodies, many are excluded from work that requires them to lift heavy objects, to leap and jump, to be fearless and unconcerned about the effects of ordinarily rigorous work on their bodies. They fear death. In Bangladesh and Pakistan, kidney sellers refer to their kidney removal as ‘the day I died’, a reference to their economic, psychological, spiritual, and social death. Many seem to have lost their already tenuous existential niche in the world.

Underground markets run by organs brokers and kidney hunters trawling poor communities exploit the desperation of both buyers and sellers. If your rational reply is: ‘Don’t criticize. Legalize the sale of organs’ then we need an organ sellers’ bill of rights to assure that sellers know the broader risks, and so that they won’t be treated as living cadavers, as containers of recyclable biological and medical material and energy to be siphoned off to the highest bidder. Even a regulated system will have to rely on ‘match makers’ and intermediaries. Hospitals and transplant teams cannot be left with the responsibility to monitor legally mandated paid donation of living people’s organs. Transplant teams in the US have failed to identify cases in which force, coercion, and fraud have motivated seemingly willing and informed consent to forfeit an organ. We need independent living donor/seller advocates – guardians of the body of the donor who have nothing to do with the medical or financial elements of the transplant who can verify that the ‘deal’ cut is fair, un-coerced, and that there are no other social or medical or psychological reasons for prohibiting the sale. Kidney sellers require unions and collective bargaining because as a potential labour force they constitute the poorest, weakest, and most vulnerable people on the face of the earth. Finally, if you’re going to plunge into the bodies of the poor, who appear to be (but may not in the long-term prove to be) healthy people, make sure that no-one becomes a kidney seller who does not have access to adequate medical insurance for the rest of their lives.

But in the final analysis, if you are able and willing to pay someone for a kidney (or a liver lobe) to save your life, please make sure that the money is paid to someone you know, even to someone you love, someone who you will be able to watch out for over the long term should their health fail and, turning the tables, they may need you to give them a helping hand. You can’t put a price on life, but you can exchange money with a promise of mutual trust and care. We do it all the time in our families and friendships. It’s called open-ended reciprocity and it is what makes social life possible in the first instance.

[Clark]

http://www.livingdonor101.com/LDBillofRights.shtml

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Living Donor Advocacy

The living organ donor has the right to considerate and respectful care.

The living organ donor has the right to contact information (name, credentials, and phone number) for the individual who has primary responsibility for his/her care from the time of the initial appointment until transfer of care to the donor’s primary care physician.

The living organ donor has the right to designate an independent advocate who is not employed by the transplant center.

The living organ donor has the right to a donor team consisting of, at least, an internal medicine physician (or an organ-specific specialist), the independent donor advocate, a transplant social worker, and a psychiatrist.

The living organ donor has the right to request assistance from the donor advocate team in the preparation of a general statement of unsuitability for donation, which will not include falsified medical information.

The living organ donor has the right to request that family or loved ones be given the opportunity to discuss openly with the independent donor advocate team and the surgical team their concerns in a safe and non-threatening environment which does not include the recipient or any member of the recipient’s family.

Living Donor Ethics

The living organ donor has a right to know there are no uniform standard selection, evaluation, or discharge criteria for live donation (i.e., no standards for age, medical history, psychiatric history, or psychosocial background.)

The living organ donor has the right to know there is no uniform standard for informed consent for live organ donation.

The living organ donor has the right to know there has never been a public policy discussion on the ethics of live organ donation in the United States.

The living organ donor has the right to make a decision about donation in a setting free of coercion or pressure.

Living Donor Informed Consent

The living organ donor has the right to know that no regulatory body or registry currently tracks living organ donation nor long-term living donor morbidity and mortality in the United States.

The living organ donor has the right to informed consent based on clear information at each step of the evaluation and donation process. The consent for evaluation should be separate from the consent for surgery.

The living organ donor has the right to and is encouraged to obtain from doctors and other caregivers (nurses, transplant coordinators, social workers) appropriate, current, and understandable information about diagnosis, treatment, and prognosis. The living organ donor is entitled to discuss and request information about the specific procedures and/or treatments, the risks involved, and the length of recuperation.

The living organ donor has the right to know that there is potential for:
- Surgical complications, including the risk of donor death;
- Organ failure and the need for future organ transplant for the donor;
- Other medical complications, including long-term complications and complications currently unforeseen;
- Scars;
- Pain;
- Fatigue and abdominal or bowel symptoms such as bloating and nausea;
- Problems with body image;
- Transplant recipient death;
- Transplant recipient rejection and need for re-transplantation;
- Recurrent disease in a transplant recipient;
- Post surgery adjustment problems;
- Impact on the donor’s family or next of kin;
- Impact on the transplant recipient’s family or next of kin;
- Impact of donation on the donor’s lifestyle;
- Out of pocket expenses;
- Child care costs;
- Possible loss of employment;
- Impact on the ability to obtain future employment;
- Impact on the ability to obtain or afford health and life insurance.
(10A NCAC 13B. 5500 Supplemental Rules for Hospitals Providing Living Organ Donation Transplantation Services)

The living organ donor has the right to ask and be informed of business relationships among the hospital, educational institutions, other health care providers, or payers that may influence the donor’s treatment and care.

The living organ donor has the right to consent to, or decline, to take part in research studies affecting care and treatment or requiring direct patient involvement, and to have those studies fully explained prior to consent.

Recipient Issues

The living organ donor has the right to be fully informed of the risks, benefits, and alternative treatments available to his or her recipient.

The living organ donor has the right to information regarding candidate listing, multiple listing, and that in some regions deceased donor organs are more readily available with a shorter wait time.

The living organ donor has the right to expect that if, during the perioperative period, it is discovered that the donor organ is unsuitable in any way for the recipient or that removing it (or some portion of it) will put the donor at risk for previously unforeseen complications, the procedure will be aborted.

 Living Donor Hospital Care

The living organ donor has the right to the same standard of care as his or her recipient.

The living donor has the right to ask for and receive surgeon and center-specific outcome data.

The living organ donor has the right to know the identity and credentials of the doctors, nurses, and practitioners involved in their care, as well as when those involved are students or other trainees.

The living organ donor has the right to know that there are no legal or professional standards for surgeon qualifications for kidney, lung, intestine or pancreas live donor surgeries. (Qualifications for live liver donor surgeons are limited to those certified by the OPTN or regulated by the states of New York and North Carolina.)

The living liver donor has the right to two liver transplant attending surgeons with demonstrated experience in live donor hepatectomy (15 procedures), demonstrated experience in major hepatobiliary resectional surgery (20 procedures) or
surgical fellowship at an American Society of Transplant Surgeons (ASTS) approved transplant fellowship program with demonstrated experience (15 procedures) with live donor hepatectomy. Included is written verification by the fellowship program director or by the director of the supervising transplant program of hands-on training at an institution performing live donor hepatectomy. These two surgeons shall be present for the critical parts of the live donor surgery including the liver parenchymal transaction. (NYCRR Title 10, Section 405.22; 10A NCAC 13B. 5500 Supplemental Rules for Hospitals Providing Living Organ Donation Transplantation Services.)

The living kidney donor has the right to a primary surgeon who is a board-certified urologist or general surgeon with demonstrated and documented expertise in both open and laparoscopic live donor nephrectomy.

The living organ donor has the right to choose his/her surgeon.

The living kidney donor has the right to a primary surgeon who is not involved in the care of the recipient.

The living donor has the right to be followed by an internal medicine physician at least daily until discharge.

The living organ donor has the right to the standard of care for his or her surgery (and appropriate to the level of risk) were it not a living donation but done for the medical necessity of the donor.

The living organ donor has the right to be transferred from the operating room to a unit that is dedicated to the care of live organs donors and appropriate to the level of risk for the organ donated. The professional registered nursing ratio to patients on a post-operative surgical nursing division shall be at a minimum of 1:4 on all shifts.

The living donor has the right to 24-hour/seven days a week coverage by general surgery residents at the postgraduate year 2 level or higher or a transplant fellow and under the supervision of an Attending surgeon until safely discharged and during the follow-up period.

Other Living Donor Concerns

The living organ donor has the right to have an advance directive (such as a living will, health care proxy, or durable power of attorney for health care) and a designated surrogate decision-maker with the expectation that the hospital will honor the intent of that directive to the extent permitted by law and hospital policy. Health care institutions must tell patients of their rights under state law and hospital policy to make informed medical choices, ask if the patient has an advance directive, and include that information in patient records.

The living organ donor has the right, at any time during evaluation, inpatient care, or post-discharge, to designate additional physicians to receive medical updates.

The living organ donor has the right to expect discharge follow-up care for 24 months consistent with the mandatory OPTN data collection requirement (under section 121.11 (b) (2) of the OPTN final rule.)

The living organ donor has the right to timely attention to complications.

The living kidney donor has the right to full Medicare A and B coverage for evaluation, testing, hospital stay, and for any complications (medical or surgical) as established by statute in 1972 per Section 1881 of the Social Security Act.

The living non-renal organ donor has the right to the full medical coverage for testing, evaluation, hospital stay, and for any complications (medical or surgical) under the recipient’s health care benefit.

Living Organ Donor Privacy

The living organ donor has the right to every consideration of privacy. Case discussion, consultation, examination, and treatment should be conducted so as to protect each donor's privacy.

The living organ donor has the right to expect that all communications and records related to his/her care will be treated as confidential. The living organ donor has the right to expect that the hospital will stress the confidentiality of this information when it releases it to any other parties entitled to review information in these records.

Living Organ Donor’s Right to Know

The living organ donor has the right to review the records about his/her care and to have the information explained or interpreted.

The living organ donor has the right to expect reasonable continuity of care when appropriate and to be informed by doctors and other caregivers of available and realistic care options when hospitalization is no longer appropriate.

The living organ donor has the right to be informed of hospital policies and practices that relate to patient care treatment and responsibilities.

The living organ donor has the right to be informed of available resources for resolving disputes, grievances, and conflicts, such as ethics committees, patient representatives, or other mechanisms available in the institution.

Copyright 2006 Rhonda Boone, Vickie Hurewitz, and Donna Luebke

Rhonda Boone
Co-founder, The Live Organ Donor Education & Protection Project (LODEPP) Widow of Danny Boone, Live Liver Donor who died in 1999, 21 days after donating a portion of his liver to his brother in North Carolina

Vickie Hurewitz
Co-founder, The Live Organ Donor Education & Protection Project (LODEPP)
Widow of Mike Hurewitz, Live Liver Donor who died in 2002, 3 days after donating 60% of his liver to his brother in New York

Donna L. Luebke, MSN, CNP Kidney donor to sister, 1994.
MetroHealth Medical Center/Case Western Reserve University
Donor advocate/nurse consultant, Living Organ Donor Advocate Program
(www.lodap.com)


References

American Medical Association. (2005). Transplantation of organs from live donors. Report on the Council of Ethical and Judicial Affairs. CEJA Report 5-A-05.

Benner P. (2002). Living organ donors: Respecting the risks involved in the “Gift of Life.” American Journal of Critical Care. 11:266-68.

Consensus Statement on the Live Organ Donor. The authors from the Live Organ Donor Consensus Group. (2000), JAMA. 284; 1-11.

Delmonico FL: Council of the Transplantation Society. (2005). Report of the Amsterdam Forum on the care of the live kidney donor: Data and medical guidelines.
Transplantation. 79 (6 Suppl):S53-66.

Delmonico FL, Graham WK. (2006). Direction of the Organ Procurement and Transplantation Network and United Network for Organ Sharing regarding the oversight of live donor transplantation and solicitation for organs. American Journal of Transplantation. 6(1):37-40.

NYCRR Title 10, Section 405.22, (1) Live Adult Liver Transplantation Services.

10A NCAC 13B. 5500 Supplemental Rules for Hospitals Providing Living Organ Donation Transplantation Services.

New York State Committeee on Quality Improvement in Living Liver Donation. A Report to: New York State Transplant Council and New York State Department of Health. (2002).

Shelton, D (2005, May 8-12). Lives on the line: Organ donors face unforeseen dangers.
St. Louis Post-Dispatch.

Shiffman ML, Brown RS, Oltoff KM, Everson G, Miller C, Seigler M, Hoofnagle JH. Living Donor Liver Transplantation: Summary of a Conference with The National Institutes of Health. Special Report. (2002). Liver Transplantation. 8; 174-188.

Zink S, Weinreib R, Sparling T, Caplan AL. (2005). Living donation: focus on public concerns. Consensus statement. Clin Transplant. 19; 581-585.