Showing posts with label consent. Show all posts
Showing posts with label consent. Show all posts

Saturday, August 11, 2018

Presumed consent: too early to declare failure, but cautions are plentiful

Frank McCormick points out a recent report in the journal Health Policy indicating that the Welsh move from opt-in to opt-out or ('deemed consent') for deceased organ donation has not so far been successful at raising transplant rates:

Welsh 2013 deemed consent legislation falls short of expectations
by Jordan Alexander Parsons

"Abstract: Wales, in 2013, was the first country in the United Kingdom to pass legislation introducing presumed (or deemed) consent for organ donation, and remains the only one. It was introduced in an attempt to increase the number of life-saving transplants taking place in the UK, in a move that policy makers hoped would mirror Spain’s success. More recently, pressure has been mounting for England to follow suit, with a public consultation currently in progress. However, the Welsh system has been far from a success, raising the question of why campaigners are so adamant that it should be replicated. Before the Welsh Government introduced the Human Transplantation (Wales) Act there had been no strong evidence to suggest it would make a difference, with countries boasting both high organ donation rates and presumed consent legislation demonstrating no clear causal relationship between the two facts. In addition, a recent report evaluating the Act has highlighted its failure to improve donation rates, and has even presented some potentially concerning statistics that may suggest a negative impact. This paper first considers presumed consent in other countries – Spain and Brazil – before illustrating the underwhelming progression of Wales’ new system and the need to look to other options."

Here's a paragraph that strikes me as important, because family consent is important in Wales, and automatic inclusion on the deceased donor registry reduces the signal value that the deceased wished to be a donor:

"Under the Welsh system, the deceased is deemed to have consented to donation unless (1) a decision as to donation by the deceased is in force, (2) the deceased had appointed a person or persons to make the decision on their behalf, or (3) a relative of friend of long standing objects on the basis of views held by the deceased and it is reasonable to assume the objection is accurate [2]. It is down to the medical team to determine whether a relative’s objection is their own, or one based on the views of the deceased. Unsurprisingly, doctors have not shown willing to challenge these objections, despite their legal right to; they consider it inappropriate to go against the wishes of the family."
**************

Here is a related article, which raises other potential problems:
Presumed consent will not automatically lead to increased organ donation
Sharif, Adnan
Kidney International , Volume 94 , Issue 2 , 249 - 251

"a review of the latest available data (2016) from the Global Observatory on Donation and Transplantation suggests no significant difference in overall transplantation activity between presumed versus explicit consent countries, with increased deceased organ donor rates balanced by decreased living donor rates among presumed consent countries (Table 1). Whether the consent process is presumed or explicit has no bearing on many inter-related factors that influence organ donation rates. For example, Coppen et al.4 observed a strong correlation between mortality rates and organ donation numbers (Spearman’s r = 0.81, P < 0.01) and that, after controlling for differences in relevant mortality rates, there was no significant influence of presumed versus explicit consent on organ donation rates."

Table 1 Organ donation and transplantation activity
ParameterPresumed consent (mean ± SD per million population)Explicit consent (mean ± SD per million population)P value
Kidney (deceased)30.9 ± 15.122.6 ± 11.10.078
Kidney (living)4.8 ± 2.616.9 ± 8.4<0 .001="" td="">
Liver (deceased)12.9 ± 8.510.1 ± 5.30.265
Liver (living)0.4 ± 0.92.7 ± 5.30.107
Heart4.8 ± 3.53.1 ± 2.60.108
Lung3.5 ± 4.04.2 ± 2.80.543
Pancreas1.6 ± 1.61.4 ± 1.00.579
Overall transplant activity59.1 ± 30.758.9 ± 23.40.982

Sunday, June 17, 2018

Title IX reporting incentives and mis-incentives

The Atlantic has a story on a strange Title IX case (and a resulting lawsuit), with the suggestion that it might have to do with perverse legal and procedural incentives:

Mutually Nonconsensual Sex

Here's the critical paragraph:
"The event in précis, as summarized by Robby Soave of Reason magazine:
“Male and female student have a drunken hookup. He wakes up, terrified she's going to file a sexual misconduct complaint, so he goes to the Title IX office and beats her to the punch. She is found guilty and suspended.”

HT: MR

Thursday, December 28, 2017

Organ donation in the UK: the particular case of children

Children in need of transplants, particularly very young children, need appropriately sized organs, which can come from deceased donors of similar age. But there are obstacles, including family consent:

Despite removal of many obstacles, UK child organ donation rates remain low

"Despite the removal of many logistical/professional obstacles, and clear guidance from national bodies, UK child organ donation rates remain lower than in other comparable countries, say experts in a leading article published online in the Archives of Disease in Childhood.

"Many families of dying children are simply not even given the chance to consider the option, and potentially save another child's life, they argue.
...
"Family refusal remains a major obstacle to organ donation from children, emphasise the authors, but that is where trained staff are key, as they can ensure that "families are given the chance to consider donation, and that it is broached at the most appropriate time by the most appropriate person, and in the most appropriate way," say the authors.

"Immediate focus should be given to consent rates and supporting family decision-making, they urge."

Wednesday, January 4, 2017

France introduces opt-out policy on organ donation

The Guardian has the story:
France introduces opt-out policy on organ donation
Change in law means consent for organs to be removed is presumed unless person joins official ‘refusal register’

"France has reversed its policy on organ donations so that all people could become donors on their death unless they join an official register to opt out.
The new law presumes consent for organs to be removed, even if it goes against the wishes of the family.
Until 1 January, when the legislation took effect, unless the person who had died had previously expressed a clear wish for or against donation, doctors were required to consult relatives who, in almost a third of cases, refused.
Those who do not want all or any of their organs to be used must now put their name on a “refusal register” – so far 150,000 people have signed up. The authorities have promised to make it easier for those who wish to refuse by allowing them to join the register online instead of by registered post.
Alternatively, those vehemently opposed to their organs being used can leave a signed document with their next-of-kin or transmit their wish orally to relatives who must make a written declaration of non-consent to doctors at the time of death. The process is explained on the agency’s Facebook page.
In November, the French Agence de la Biomédecine released a film, Déjà-vu2, aimed at encouraging 15- to 25-year-olds to agree to organ donation.
The European Union has highlighted the lack of organs for transplant and the increasing number of patients on waitings lists worldwide. Its figures claim that in 2014, 86,000 people were waiting for organ donations in EU states, Norway and Turkey, and 16 people were dying every day while waiting for a transplant.

In the UK, doctors lament one of the lowest consent rates in Europe, as well as a shortage of donors from black or Asian communities. A record number of organs were donated and transplanted in the UK in 2015-16, but the rate remains short of the target of 80% by 2020. The biggest obstacle remains relatives’ opposition, who have vetoed transplants even from registered donors.
NHSBT, which is responsible for the NHS organ donor register and for matching and allocating donor organs, said it was considering further steps it could take when approaching families to ensure more potential donors’ decisions were not vetoed.
One option would be to no longer ask the next-of-kin to confirm consent or authorisation. Their permission is not required by law if someone has registered a decision to donate on the NHS organ donor register.
Families in Scotland are already required to complete a retraction form to record why they overturned a relative’s decision to donate. NHSBT said a similar form be introduced across the UK."

HT: Frank McCormick

Wednesday, December 7, 2016

Family consent for deceased organ donation in Canada

The National Post has the story:
One in five willing organ donors in Ontario have their wishes vetoed by family — and doctors don’t argue

"Legislation in most provinces and territories outlines legal authority for organ procurement from someone who has died. Written consent, such as an organ donor card or an online registration form, is legally binding. Family members can’t revoke that consent in most Canadian jurisdictions (the law is less clear in the North West Territories) — their refusal is legally meaningless.

"Despite the legal authority to do so, every provincial donation organization in Canada has a policy that the wishes of families will be followed (except Manitoba, where the wording is vague). Alberta legislation clearly prohibits seeking family consent when donor consent was previously provided and yet an Alberta Health Services directive states “your next of kin will be asked by the donation team to sign a consent form.”

"With more than 4,000 Canadians waiting for a lifesaving transplant, the gap between the law and what actually happens is glaring.

“People who register want donation to be part of their legacy,” says Linda Wright, the former director of bioethics of the University Health Network in Toronto, where more organ transplants are performed than anywhere else in Canada.

“As a living person you want to know your wishes will be respected,” she says, but health-care providers “don’t want to further traumatize families” often shocked and devastated over the sudden loss of a loved one.

"To date, no physician in Canada has ever overridden the wishes of the family in favour of the legally binding consent of the potential donor."

Sunday, October 9, 2016

Family consent to deceased donation remains a concern in Britain

The Guardian has the story
Organ donation rates for transplants still too low in UK, says NHS
Consent rate one of lowest in Europe, with black, Asian and ethnic minority communities of particular concern

"A record number of organs were donated and transplanted in the UK in 2015-16 but the consent rate is still one of the lowest in Europe, with a worrying shortfall of donors from black or Asian communities.
In the 12 months to the end of March, 1,364 people became organ donors when they died and their donations resulted in 3,519 transplants taking place, figures published on Thursday show.
The consent rate stood at 62%, slightly up on 2012-13 when it was 57%, but well short of the target of 80% by 2020 with the biggest obstacle being family refusal, mostly when they were unaware of their deceased relative’s intentions.
The consent rate was much lower (34%) among potential black, Asian and minority ethnic (BAME) donors, which is of particular concern as 26% of the current waiting list are BAME."

Monday, September 26, 2016

The effects of Israel's new organ transplantation law on family consent for deceased donation

Deceased donor organs are a scarce resource with the property that how they are allocated may influence their scarcity, by influencing the decisions of potential donors and their families.  Recent changes in Israeli law give us a window on this...
Incentivizing Authorization for Deceased Organ Donation With Organ Allocation Priority: The First 5 Years
by A. Stoler, J. B. Kessler, T. Ashkenazi, A. E. Roth, J. Lavee

American Journal of Transplantation, Volume 16, Issue 9, September 2016
Pages 2639–2645

Abstract

The allocation system of donor organs for transplantation may affect their scarcity. In 2008, Israel's Parliament passed the Organ Transplantation Law, which grants priority on waiting lists for transplants to candidates who are first-degree relatives of deceased organ donors or who previously registered as organ donors themselves. Several public campaigns have advertised the existence of the law since November 2010. We evaluated the effect of the law using all deceased donation requests made in Israel during the period 1998–2015. We use logistic regression to compare the authorization rates of the donors’ next of kin in the periods before (1998–2010) and after (2011–2015) the public was made aware of the law. The authorization rate for donation in the period after awareness was substantially higher (55.1% vs. 45.0%, odds ratio [OR] 1.43, p = 0.0003) and reached an all-time high rate of 60.2% in 2015. This increase was mainly due to an increase in the authorization rate of next of kin of unregistered donors (51.1% vs. 42.2%). We also found that the likelihood of next-of-kin authorization for donation was approximately twice as high when the deceased relative was a registered donor rather than unregistered (89.4% vs. 44.6%, OR 14.27, p < 0.0001). We concluded that the priority law is associated with an increased authorization rate for organ donation.

Thursday, January 21, 2016

Family consent for (and sometimes veto of) organ donation in England, and presumed consent in Wales

Here's a BBC report:
Organ donations vetoed by hundreds of bereaved families, By Jane Dreaper, 15 January 2016

"Bereaved families have blocked the donation of organs from 547 UK registered donors since 2010 - about one in seven cases, figures show.

"NHS Blood and Transplant (NHSBT) says it will no longer seek the consent of families formally, to make such "overrides" more exceptional.

"Instead, they will be given a leaflet explaining consent - or authorisation in Scotland - rests with the deceased.

"Families can still veto that consent but must provide reasons in writing.

"NHSBT expects the change to lead to a 9% rise in donors.
It said the 547 blocked donors would have provided organs for 1,200 patients."
...
"Last month, the system in Wales changed to "presumed consent", under which people are deemed to be potential donors unless they have specifically opted out."

Monday, August 5, 2013

It's National Minority Organ Donor Awareness Week

Here's the relevant U.S. Department of Health and Human Services website: National Minority Donor Awareness Week, August 1-7

"Observed annually, National Minority Donor Awareness Week was created to increase awareness of the need for more organ, eye, and tissue donors, especially among minorities. Now in its 17th year, this special observance honors minorities who have been donors, and encourages others to register as donors and take better care of their health in order to reduce the number needing a transplant."

A related story: Minority Organ Donors in Dire Need in Illinois
""The essence of organ and tissue donations in the African-American and Hispanic communities is critical," said Jackie Lynch, Director of Community Affairs for Gift of Hope Organ and Tissue Donor Network.
Gift of Hope is an agency that helps people in need of organ and tissue transplants. More than half of the state's waiting list are minorities, but they are the fewest registered donors, according to Lynch. He says 18 percent of the state’s population is African-American, but the demographic makes up 54 percent of people in need of organ donor transplants.
"There are so few African-American donors, yet so many waiting. They wait longer and in many cases they die waiting."

Here's a recent paper on consent rates: Crit Care Med. 2013 Feb;41(2):496-505.
Deceased organ donation consent rates among racial and ethnic minorities and older potential donors.
Goldberg DS, Halpern SD, Reese PP.
DESIGN, SETTING, AND SUBJECTS:
We used data provided by the Organ Procurement and Transplantation Network to analyze the 35,823 organ procurement organization-reported eligible deaths (potential brain-dead donors ≤ 70 yr of age) from January 1, 2008, to October 31, 2011.
"MEASUREMENTS AND MAIN RESULTS:
Excluding cases where donation authorization was based on prior patient documentation (e.g., donor registry), consent was obtained on 21,601 (68.9%), not obtained on 8,727 (27.8%), and not requested on 1,080 (3.4%) eligible deaths. There were substantial differences in consent rates among racial/ethnic groups (77.0% in whites, 67.5% in Hispanics, 54.9% in blacks, and 48.1% in Asians) and organ procurement organizations (median [interquartile range]: 72.4% [67.5-87.3]). In generalized estimating equation models, with whites and patients ages 18-39 yr as the respective reference groups, consent for donation was less likely to be obtained among Hispanics (odds ratio 0.54; 95% confidence interval 0.44-0.65), blacks (odds ratio 0.35; 95% confidence interval 0.31-0.39), Asians (odds ratio 0.31; 95% confidence interval 0.25-0.37), and eligible donors ages 55-64 (odds ratio 0.72; 95% confidence interval 0.67-0.77), and ≥ 65 yr (odds ratio 0.58; 95% confidence interval 0.52-0.64).
CONCLUSIONS:
In presenting the first published analyses of consent rates among all eligible deaths, this study confirms smaller and regional studies that showed significant differences in consent rates between whites and racial/ethnic minorities (blacks, Hispanics, and Asians). The study also identifies considerable variation in consent rates between age groups and between organ procurement organizations. Critical care physicians are usually the front-line providers for potential brain-dead donors and their next-of-kin, and these data highlight the need for further research to identify the causes of variation in consent rates and mechanisms to increase rates where appropriate."