1. Palliative Care and Organ Donation
Monday, March 20, 2006
Terminal patients in the ICU and organ donation
In my job as a palliative medicine doctor, I am frequently talking with patients and families about the potential of withdrawal of ventilators/pressors/dialysis in the ICU. Obviously this is not the only thing I talk about, but it often comes up in discussing dignity and futility and all the things that demonstrate our limits with modern medicine.
One of the things I have not seen implemented well (in person or in literature) is a way to make organ donation and palliative medicine work a little closer together. An article in the current Intensive Care Medicine describes a pilot project to develop a program for non-beating heart donors (NBHD) after withdrawal of life support. This Swiss study was prospective and identified 73 of 516 deaths that might be appropriate for NBHD of kidney, liver or lung. While they found that there was too much variability in how patients died in the ICU after withdrawal to implement their program, they did come up with some interesting data and discussions.
Part of the dilemma in implementing a NBHD organ procurement program was the variability of time after withdrawal of intubation or pressors. They note it would be hard to have a surgical team on standby for a variably prognostic cardiac death versus a brain death where the organs are procured in the OR after the aorta is clamped (from my ancient 1998 knowledge during my organ transplant rotation on surgery).
But this does give some helpful prognostic information for professionals dealing with near-death prognostication and how to communicate to family members.
——————————————Survival time (hours)
Traumatic brain injury (n = 21) ———-> 6.1 (2.4 -– 12.5)
Stroke (n = 25) ————————–> 3.9 (1.3 -– 11.5)
Anoxic brain injury (n = 27) ————–> 3.6 (1.0 -– 9.8)
All patients (n = 73) ———————-> 4.8 (1.4 – 11.5)
But it really gets interesting as they discuss the ethics of purposely hastening death with opioids and sedatives for the purpose of improved procurement times for NHBD. They cite a JAMA article about the European ETHICUS study that states this happened in 6.5% of ICU deaths. (I will comment on that older article after I get a chance to read it more closely.)
Although they clearly state that the ethics of utility/distributive justice may demonstrate this approach to be ok, they note it does violate beneficence and the principle of double-effect. All of this gets me to my point in reading this article which was….should there be more integration between palliative medicine and organ transplantation?
On one hand palliative medicine professionals are good communicators as are organ transplant procurement professionals. We could minimize the trauma of discussing these issues with family members if we worked together more closely…BUT could we also portray that we are working 'in cahoots' to grab as many organs as we can, thus tainting the noble goals of palliative medicine with the mis-perception of becoming a vulture? I am not sure where to sit on this fence, but it is an idea that I have not come across much in the palliative medicine literature.
It reminds me of how a colleague of mine sees the euthanasia/physician-assisted suicide (PAS) issue and its relevance to hospice. If hospice/palliative medicine professionals (THE experts at suffering at the end of life) are also the same people who assist with PAS or euthanasia, it would risk people not coming to us for help because they would fear we would push euthanasia or PAS voluntarily or involuntarily, and therefore we would do less healing and comforting.
(My Standard Disclaimer: Dr. Sinclair and his current and former employers and states do not endorse or practice euthanasia or physician-assisted suicide, but do encourage the open, non-judgmental discussion of these topics for educational and ethical discourse about this controversial area of medicine.)
(PS: I have used this disclaimer ever since I gave Resident Grand Rounds on the controversy of euthanasia and PAS, because so many people got the wrong idea because I wanted to discuss the ethical dilemmas inherent within.)
Free article of the text available by registering for Springer Link (pretty quick and simple)
Posted by Christian Sinclair, MD at 3/20/2006
Intensive Care Med. 2006 May;32(5):708-12. Epub 2006 Mar 14. Related Articles, Links
Are terminally ill patients dying in the ICU suitable for non-heart beating organ donation?
Revelly JP, Imperatori L, Maravic P, Schaller MD, Chioléro R.
Surgical Intensive Care Unit, Centre Hospitalier Universitaire Vaudois, 1011, Lausanne, Switzerland, [email protected].
OBJECTIVE: To evaluate the feasibility of implementing a program of controlled non-heart beating organ donation, in patients undergoing the withdrawal of intensive care treatment. DESIGN AND SETTING: Prospective observational study. Medical and Surgical ICUs in a tertiary university hospital. PATIENTS: Consecutive patients younger than 70[Symbol: see text]years dying in the ICU after treatment withdrawal for dire neurological prognosis. MEASUREMENTS AND RESULTS: We analyzed prospectively collected data from the ICU clinical information system. Seventy-three of 516 ICU deaths (13%) were identified, equally distributed among traumatic, stroke, and anoxic brain injury. The management and the course in these three diagnostic categories were similar. All patients underwent withdrawal of mechanical ventilation and half were extubated. Median time to death was of 4.8[Symbol: see text]h (IQR 1.4-11.5). In 70% of cases the patient received analgesia and 30% sedation. Such treatment was not related to earlier death. Hypotension was observed in 50% of patients during the 30[Symbol: see text]min preceding cardiac death. CONCLUSIONS: With our current management of terminal patients controlled non-heart beating organ procedure may be difficul
t due to the duration and variability of the dying process. This observation suggests that we can perform better by evaluating this process moreclosely.
PMID: 16534569 [PubMed – in process]
Forced Organ Removal in Singapore Raises Concerns. A Singapore citizen, Sim Tee Hua, lost consciousness at work and was announced brain dead at the hospital on February 1. Because Sim didn't sign a statement of not wanting to donate his organs, according to Singapore law, his organs would be automatically donated to the hospital, against his family's wishes.
Sim's family begged the hospital to postpone the organ removal because he was still breathing and his heart was beating. However, despite the family's desperate request, the hospital forcibly removed Sim's organs, triggering disputes about forced organ removal.
Hospital's Right to Take Organs
The hospital claimed that since Sim didn't sign the statement of not wanting to donate his organs, the hospital can choose to ignore the family's will and has the right to use his organs. Sim's mother said she wasn't against organ donation. She felt that her son would wake up given time and she simply couldn't understand why the hospital wouldn't give them a couple of days more.
Sim's family tried many times to persuade the hospital to wait for a couple of days since Sim was still breathing, his heart was still beating, and his temperature was normal. Sim was healthy before the incident and his family wanted to give him a chance to regain consciousness. The hospital only agreed to give them one day.
Sim's older brother said that they didn't know about this law. Sim's older sister recalled that on the second day (February 2) after Sim was admitted into the hospital, the doctor told them that Sim was fine. The next day, the hospital called them and told them Sim went into a coma and asked them to come over. Sim's family was surprised that the organ transplant staff had come on February 3, even before the death certificate was issued.
According to the family, they couldn't find the doctor in charge during the first two days at the hospital. They were told that Sim had a stroke and no other details were given. Sim's family begged the hospital to give them two more days until February 7 considering Sim was really healthy before. The hospital told them they could only wait until 10 p.m. on February 6 because Sim's organs would start to fail as his brain dies.
Over 30 Security and Police Arrive
According to Sim's family, on February 6, they saw tears running down Sim's face and his hand moved. They immediately told the doctor but the doctor said he needed to open his eyes (to prove that he could still wake up.) At around 9 p.m., about 20-30 hospital security staff and police came to Sim's room. Around 20 family members were there that night. The family claimed the police were rude and rough on them. At 1 a.m. on February 7, according to Sim's sister and cousin, the police tricked them and pushed Sim away, running through another door. Media later reported the hospital took both of Sim's kidneys and corneas.
Sim's family received a letter from the hospital informing them that after filling out the form enclosed with the letter, Sim's parents would qualify for a 50 percent discount for hospital fees incurred in the next five years. Sim's sister commented that she could not understand why her parents couldn't automatically be qualified for the discount, since Sim was considered automatically qualified for donating his organs?
The reporter called the Singapore General Hospital asking for the doctor and was transferred to the hospital's public relations department. A lady told the reporter to call the Ministry of Health for they are in charge of organ acquisitions. The reporter asked for an explanation of what happened to Sim, since he died in the hospital and his family filed a complaint against the hospital. The reporter was told to send questions through email as they do not answer questions by phone.
Medical Expediency Backfires Publicly
After the incident was made public, many Singaporeans wrote to the media to express their sympathy for Sim's family. The incident has also triggered debates on whether the law on forced organ donations was reasonable. After the incident, many people have gone to hospitals and clinics requesting the form to decline organ donation.
– 'Transplant Tourism' on Rise Due to Donor Shortages Saturday, March 31, 2007
– More Evidence of China's Organ Harvesting Surfaces Friday, March 30, 2007
– China's New Regulation Exposes Organ Removal From Live Minors Monday, March 26, 2007
– 'In China, They Harvest our Organs, in Russia, They Do Not Let Us Hold Peaceful Appeals' Monday, March 26, 2007; [3April2007, By Li Xin, Epoch Times Staff, http://en.epochtimes.com/news/7-4-3/53670.html, SINGAPORE] Compassionate Healthcare Network (CHN) www.chninternational.com]
States Revising Organ-Donation Law: Critics Fear Measure May Not Go Far Enough to Protect Donors. State legislatures are rewriting legislation governing organ donations in one of the most ambitious initiatives in at least 20 years to alleviate the chronic shortage of kidneys, livers and other body parts, an effort that some doctors and ethicists fear tilts too far toward allowing organs to be taken.
Virginia, Idaho, Utah and South Dakota have already adopted a model law designed to make organ donation easier by clarifying a host of sensitive questions. An especially tricky one is how to handle unconscious patients who signed donor cards but also specified that they did not want to kept alive on life-support. Another one is what doctors should do when the family of a dying person who agreed to be a donor objects to surgeons taking their loved one's organs.
"Every hour, a patient dies for the lack of an available organ," said Carlyle C. Ring Jr., who chaired the panel that wrote the model law. "Our hope is this could help with this critical health problem."
The measure awaits the signatures of the governors of Arkansas, Indiana, Iowa and New Mexico. At least 17 other states, plus the District and the U.S. Virgin Islands, are considering the legislation. Supp
orters hope it is adopted nationwide.
While praised by transplant advocates, the model law has stirred concern among some doctors and bioethicists. Critics say it could result in people becoming donors or kept on life support against their or their family's wishes. And some worry that the measure could make doctors more hesitant about administering morphine and other drugs to make dying patients comfortable, for fear of rendering their organs useless for transplantation.
The revised model law is the latest in a series of initiatives by transplant advocates to boost the number of organs available for the more than 95,000 Americans on waiting lists. Organ banks have also been aggressively promoting a controversial practice that allows surgeons to take organs from patients who are not brain dead, more than doubling the number of such donations in the past three years.
"There are lots of efforts to bridge the growing gap between demand and supply," said Arthur L. Caplan, a University of Pennsylvania bioethicist. "We have to be very careful that we don't make people think that we don't have their best interests in mind and are just going to use them to get their body parts."
The changes are especially troubling, some say, because many Americans check the box to become organ donors when they get their driver's licenses without fully considering the implications.
"Most people who agree to be organ donors think about it in terms of what will happen to their body after they die," said Ana S. Iltis, a St. Louis University bioethicist. "This says it also has implications for what they do to you before you die."
The model law, the Revised Uniform Anatomical Gift Act, updates 1968 legislation adopted by every state to make organ donation procedures uniform nationwide. The law was rewritten in 1987, but only 26 states adopted that version. The National Conference of Commissioners on Uniform State Laws issued the revision after two years of review to reflect medical advances and to clarify ambiguities that hinder donation. It was sent to state legislatures this year to restore consistency nationwide.
"What we're trying to do is come up with a set of uniform rules that will encourage more donations," said Sheldon F. Kurtz, a University of Iowa law professor who helped craft the model law. "The death of any donor is always unfortunate, but the question is, can some good come from it?"
Among many changes, the measure expands the list of people who can consent to an unconscious patient becoming a donor, and makes it clear that a person's decision to be an organ donor cannot be revoked by anyone else.
"If someone says they want to be an organ donor, then what this says is that they are going to be an organ donor — families can't override that decision. That's a situation that occurs very commonly," said Robert M. Sade, the American Medical Association's representative to the committee that drafted the measure. "The idea behind this is to facilitate organ donation as much as possible."
The most controversial section deals with unconscious patients who have signed donor cards but also "living wills" or other documents that state that they do not want a ventilator or other medical care to keep them alive, which is sometimes necessary to maintain organ viability until a transplant can take place. Under the act, the donor card trumps the living will, which triggered objections from some bioethicists and doctors who care for critically ill patients.
"It's a false assumption that it's more important for everyone to donate organs than avoid machinery at the end of life," said Michael A. DeVita, an intensive-care specialist at the University of Pittsburgh. "For some people, avoiding a machine may be more important than donating their organs."
In response, the commission sent states substitute language that calls for family members or others to be consulted in such situations to try to determine what the donor would have wanted. Those states that have approved the law already, however, will have to wait until next year to amend it.
While that satisfied DeVita, others remain uneasy that the law would still put organ donation on an equal footing with declared end-of-life wishes.
"I think a person's instructions for end-of-life care should always take precedence over 'make me an organ donor,' " Caplan said.
Others are troubled by the cumulative effect of the proposed changes.
"My concern is that the dying patient is going to be neglected or even harmed for the benefit of someone else," said Gail A. Van Norman, a professor of anesthesiology and bioethics at the University of Washington in Seattle.
The measure, for example, aims to establish more computerized registries of people who have agreed to be donors but makes no similar provision for those who do not want to be donors. It also gives organ procurement organizations the power to keep potential donors on life-support while they evaluate their organs' suitability for transplantation.
"For a family that's been sitting at a bedside struggling to make an end-of-life decision, asking them to wait even 12 hours can be huge," Iltis said. "This seems to give organ procurement organizations significantly more authority over what happens to patients who could be donors."
Sade and others defended the model law, saying it strikes the proper balance between fulfilling the wishes of those who want to donate and protecting end-of-life care.
"If there's a patient requiring palliative or comfort care, you treat them first. That's clear. This doesn't change that balance," said Christina W. Strong, who represented the Association of Organ Procurement Organizations. "What it does is make sure that to free up an ICU bed a hospital doesn't forget the patient may have wanted to be a donor or their family may want them to be a donor."
But some are concerned that the measure could backfire, frightening people away from signing donor cards.
"Anything that blurs that line between patient-comfort-care-first, organ-donation-later is going to make the American public very nervous," Caplan said.
[Comment: This change is an issue I have brought up many times before and I did talk about with Rob Stein when he was preparing his article on NHBD. (If you go to the URL, you will see a map showing just how widespread these laws or pending laws actually are.)
[4Apr07, page A01, By Rob Stein, Washington Post http://www.washingtonpost.com/wp-dyn/content/article/2007/04/03/AR2007040302062.html]
UK Chief Medical Officer Pushes for Automatic Organ Donation: To avoid presumed consent, automatic removal of organs, persons must have previously signed opt-out form. Britain's Chief Medical Officer has urged that in order to meet the growing organ transplant demand, legislation should make organ donation the default for patients.
Chief Medical Officer Sir Liam Donaldson stated in Britain's annual health report this year that the United Kingdom needs three times the number of organ donors on the National Health Service (NHS) register, the Guardian Unlimited reports. He referred to the present situation in the UK as a transplant "crisis."
Donaldson said: "To meet the current demand for organs, the number of people on the NHS donor register would need to approximately treble. I believe we can only do this through changing the legislation to an opt-out system with proper regulation and safeguards."
Donaldson's proposition is in line with a 2005 statement by the British Medical Association (BMA) urging for the patient's "presumed consent for organ donation." The report underlined the BMA's disappointment that British law did not already have such a provision and defended its position claiming, "90% of people would be willing to donate their organs for transplantation purposes, but less than a quarter of the population are on the NHS Organ Donor Register."
When approaching relatives, "Instead of being asked to consent to donation, they would be informed that their relative had not opted out of donation and, unless they object-either because they are aware of an unregistered objection by the individual or because it would cause major distress to the close relatives-the donation would proceed."
LifeSiteNews.com medical advisor Dr. Shea commented on Donaldson's proposal: "This is a statistics game being played," he said. "People might get fooled because they didn't read the small print. The default position is too dangerous in terms of the person not understanding it, not opting-out because they failed to appreciate that they had the option."
Referring to organ harvesting, he explained, "What you have here is a huge operation in which the aim of saving the life of someone is good, but the methods are at best dubious. In the fuzzy area in between life and death, sometimes a person dies, but no one knows exactly when."
"It's atrocious. There is no moral certainty that a person is dead when they are declared brain dead or declared to have suffered cardiac death. Morally speaking, you are not entitled to do something that would endanger a person's life if there is any doubt whether they are alive or not. It's like hunting," he said. "You can't shoot if you're not sure whether it's a deer or a man. You need moral certainty."
Furthermore, he stated, "No doctor can really tell whether a person will die or get better when they come in. One of the criterions given for brain death is irreversible loss of function for the entire brain. This is a prognosis, not a diagnosis. It's either taken place or not. It's like an irreversible car-crash. It's a logical impossibility."
The moral difficulty posed by organ donation is poignantly illustrated by the fact that there have been several cases of women who have been brain dead for significant periods of time who have still given birth to babies. In 2005, for example, the case of a 26-year old pregnant Virginia woman gained world-wide attention. Susan Torres was brain dead after suffering a stroke, but was kept on life-support for three months until after her baby was born by Caesarean section.
Brain-Dead Virginia Woman Gives Birth To Healthy Baby Girl
Organ Harvesting Before "Brain-Death" Increasingly Common
HEART TRANSPLANTS: IS BRAIN DEATH REAL DEATH?
Surgical Preparation For Organ Donation For Non-Brain Dead Patients?
New study questions "brain-death" criterion for organ donation
Brain Dead Woman Gives Birth
[England, 17July2007 LifeSiteNews.com, Elizabeth O'Brien]