Tag: risks and benefits

Bioethics Blogs

What We Do When We Resuscitate Extremely Preterm Infants

by Jeremy R. Garrett, Brian S. Carter & John D. Lantos

This editorial is made available on bioethics.net. The editorial along with the target article and open peer commentary is available via tandfonline.com

Neonatal intensive care is one of the most successful medical innovations of the last half century. Every year, in the United States alone, nearly 500,000 babies are born prematurely. Before neonatal intensive care, most of those babies died, and those who survived often suffered significant life-limiting impairments. Today, most preemies survive without impairments.

In spite of this success, neonatal intensive care unit (NICU) care has always been viewed as ethically problematic. The objections to this care have taken different forms at different times.

Economists questioned whether neonatal intensive care was cost-effective. Careful studies showed that it was more cost-effective than any other form of intensive care, and even more cost-effective than many modalities of preventive care (including, for example, Pap smears).

Some parents claimed that doctors were not honestly informing them of the potential long-term sequelae of NICU care, and that, if honestly informed, many parents would choose palliative care. Careful studies showed that these parents were unusual. Most parents want more intensive care than even doctors and nurses think is appropriate, and they want it even when informed that survivors might be left with significant disabilities.

Bioethicists and doctors argued that neonatologists were playing God, that premature babies were not full-fledged persons, and that saving disabled babies was like an ill-conceived military mission. Each of these attempts to undermine the commitment made by parents, doctors, and society to saving preemies has been met with hard questions and strong rebuttals.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

PCORI Announces New Initiative to Support Shared Decision Making

The Patient-Centered Outcomes Research Institute (PCORI) today announced a new initiative designed to help patients work with their clinicians to choose the healthcare options best suited to their needs.


PCORI’s Board of Governors today authorized up to $6.5 million in initial funding to support efforts to promote wider use of shared decision making strategies. Shared decision making is the process by which clinicians and patients consider available effective treatment options and the comparative evidence for risks and benefits of each, and then work together to choose which might work best for the patients. 


This process is important because even when adequate evidence is available to support the effectiveness of two or more options, individual patients often have unique priorities and preferences that lead them to make different choices.


PCORI has always been committed to promoting shared decision making as a path to improving patient care and outcomes. The institute has made a significant investment in research related to shared decision making strategies and interventions to help patients, caregivers and clinicians work together to consider healthcare options. 


This new initiative is an extension of that effort, focusing on putting into practice tested strategies that incorporate the latest evidence.
“PCORI recognizes that for many clinical situations, patients and clinicians need to work together to consider all available treatment options, informed by the patients’ preferences,” said PCORI Executive Director Joe Selby, MD, MPH. “For a variety of reasons, shared decision making isn’t as widely used in practice as it should be. Figuring out how to address the barriers limiting its use and move these strategies into practice is important to us.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Burke, Briggs and Wills: Why we should not fear the judgment in Charlie Gard

In a blog post today, Julian Savulescu argues that in a parallel adult version of the highly controversial Charlie Gard case, a UK court might thwart an unconscious patient’s previously expressed desire for self-funded experimental medical treatment. He finds the Gard decision deeply disturbing and suggests that we all have reason to fear the Charlie Gard judgment.

I respectfully beg to differ.

Julian’s thought experiment of the billionaire ‘Donald Wills’ is not analogous to the real Charlie Gard case, his analysis of the UK legal approach to best interests cases for adults is potentially mistaken, his fear is misplaced.

Wills and Gard

Thought experiments are an important tool in philosophy and medical ethics. They enable us to analyse our intuitive responses to ethical questions. Comparing parallel cases – for example as James Rachels did in his now famous 1975 paper ‘Active and Passive Euthanasia’ – can helpfully identify factors that are relevant to ethical analysis, as well as factors that aren’t relevant. However, like scientific experiments, thought experiments need to be carefully designed. Otherwise they can mislead.

Julian imagines a wealthy adult patient, Donald Wills, who has a rare mitochondrial illness very similar to Charlie Gard. While Wills’ wife has identified a potential treatment and requested that he be transferred overseas for an experimental treatment, the imaginary court, in a decision parallel to the Gard case, finds that this treatment would not be in Donald’s best interests. The judge denies the request and Donald’s treatment is withdrawn.

However, in a divergence from the Gard case, Julian tells us that Wills

“wishes to live as long as possible.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

My Sister’s Keeper: An Assessment of Living Organ Donation among Minors

by Alex Fleming

The 2009 film My Sister’s Keeper, based on Jodi Picoult’s 2004 New York Times bestselling novel which bears the same name, is among other things, a controversial story about a young girl (Anna Fitzgerald) who sues her own parents in order to obtain legal rights to the use of her body. For as long as she can remember, Anna has unwillingly been providing blood and bone marrow to her older and critically ill sister, Kate. As the story unfolds, tension within the family arises as the 13 year-old Anna Fitzgerald becomes fully aware of her reason for existence, so to speak, which is to prevent the death of her older sister by providing a regular supply of blood and bone marrow, which she has done regularly for several years. Later on, as Kate’s condition worsens and her renal function begins to fail, the parents naturally turn to Anna to provide what could be a life-saving kidney transplant for her older sister. The climax of the story begins as Anna confidently and heroically refuses. The story raises a slew of bioethical issues which are beyond the scope of this essay; however, the story sheds light on a topic worthy of discussion: living organ donation among minors.

As the supply of organs suitable for transplantation decreases and the demand for them increases, the question of living organ donation among those yet of age has become a question of greater concern, primarily among those who point to the various ethical implications which such a procedure creates.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The sad case of Charlie Gard and the rights *and wrongs* of experimental treatment

By Dominic Wilkinson @Neonatalethics

 

In a blog post published yesterday, Julian Savulescu argues that Charlie Gard should have received the experimental treatment requested by his parents 6 months ago. He further argues that “we should be more aggressive about trials of therapy where there are no other good options”.

I have previously argued (in a blog and in an editorial in the Lancet) that the requested treatment is not in Charlie’s best interests. In a forthcoming paper (co-authored with John Paris, Jag Ahluwahlia, Brian Cummings and Michael Moreland), we compare the US and UK legal approaches to cases like this, and argue that the US approach is deeply flawed.

Here are four areas where I agree with Julian

  1. In retrospect, it would have been better for Charlie to have received the requested treatment 6 months again than to have a protracted legal dispute (with continued treatment in intensive care anyway)
  2. We should generally allow patients who are dying or severely ill, without other available treatment, to try experimental treatment if that is something that they (or their family) strongly desire
  3. If experimental treatments are unaffordable in public health systems but patients are able to pay for them privately, or have crowd-sourced funding for them, they should be made available
  4. Experimental treatments should not be provided where the side effects make that treatment highly likely not to be in the patient’s interests.

However, despite these areas of common ground, I reach starkly different conclusions from Julian. In my view, the doctors were right to oppose experimental treatment for Charlie in January, the judges were right to decline the family’s request for treatment in April, and it would be deeply ethically problematic to provide the treatment now, notwithstanding the recent intervention of the US president and the Pope.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

by Dominic Wilkinson and Julian Savulescu

@Neonatalethics

@juliansavulescu

Tomorrow, the UK Court of Appeal will review the controversial case of a British infant, Charlie Gard. Charlie’s parents are appealing a recent High Court decision that gave doctors permission to withdraw his life support. They have raised money for Charlie to travel to the US for an experimental medical treatment.

 

Best Interests

The legal decision for Charlie will be based upon an assessment of his best interests. He has a rare genetic disorder affecting his muscles and his brain. He has been on life support since last October and has been progressively deteriorating. A neurologist in the USA has suggested that experimental nucleoside treatment might, in theory, offer some benefit, though it has never previously been tried in this situation.

The central ethical question is whether it would be best to provide the experimental treatment and continue intensive care for Charlie for several months more, or to withdraw treatment and allow him to die. How should we weigh up the risks and benefits of those two alternatives?

We have previously written about this difficult question. In a pair of editorials in the Lancet medical journal, we expressed different points of view. Dominic Wilkinson argued that the proposed course of treatment would do more harm than good. In his view, it is likely that Charlie would experience pain and discomfort from continued treatment; it is also unlikely, given what is known about it, that Charlie would benefit from nucleoside treatment. In contrast, Julian Savulescu argued that it is not clear that continued mechanical ventilation in intensive care is so terrible a life that it would not be worth living.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Unusual Case of Ian Paterson and Criminally Harmful Surgery

Guest post by Alex Mullock, University of Manchester

On 28th April 2017 in the case of breast surgeon, Ian Paterson, the jury in Nottingham Crown Court agreed that in carrying out unnecessary and mutilating surgery the defendant had done what no reasonable surgeon would do.  Paterson was convicted of seventeen counts of wounding with intent to cause grievous bodily harm (GBH) and three counts of unlawful wounding (under, respectively, sections 18 and 20 of the Offences Against the Person Act 1861) against nine women and one man. These ten victims, however, have been reported to represent a tiny proportion of all Paterson’s alleged victims, a group that might amount to hundreds from his many years of practice in the NHS and private sector.

The “obscure motives” that compelled Paterson may forever remain a mystery but it is interesting that the charges against him relate only to patients he treated in his private practice.  This enabled the prosecution to create a narrative that suggested that financial gain could have been the motivating factor for Paterson’s crimes.  Without greed as a possible motive his actions are baffling, and the prosecution’s case, in alleging that surgery which Paterson argued was performed in the patient’s best interests actually constituted GBH or unlawful wounding, would be more challenging because of the medical context of the allegations.  Importantly, the medical exception to the criminal law – the principle that consensual surgery carried out by qualified professionals is legitimate (“proper medical treatment”) – means that there is an assumption that harm caused by surgery is not a matter for the criminal law because it is a risk that we accept in order to enjoy the benefits of surgical medicine.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Consent based on trust rather than information?

Consent to research participation has two dimensions. On the one hand, the researcher wants to do something with the participant: we don’t know what until the researcher tells. To obtain consent, the researcher must provide information about what will be done, what the purpose is, what the risks and benefits are – so that potential participants can decide whether to consent or not.

On the other hand, potential participants would hardly believe the information and consider consenting, if they didn’t trust the researcher or the research institution. If trust is strong, they might consent even without considering the information. Presumably, this occurs often.

The fact that consent can be given based on trust has led to a discussion of trust-based consent as more or less a separate form of consent, next to informed consent. An article in the journal Bioethics, for example, argues that consent based on trust is not morally inferior to consent based on information. Consent based on trust supports autonomy, voluntariness, non-manipulation and non-exploitation as much as consent based on information does, the authors argue.

I think it is important to highlight trust as a dimension of consent to research participation. Consent based on trust need not be morally inferior to consent based on careful study of information.

However, I get puzzled over the tendency to speak of trust-based consent as almost a separate form of consent, next to informed consent. That researchers consider ethical aspects of planned research and tell about them seems to be a concrete way of manifesting responsibility, respect and trustworthiness.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Why Not All Forms of Artificial Intelligence Are Equally Scary

March 9, 2017

(Vox) – There are, generally speaking, three forms of AI: weak AI, strong AI, and superintelligence. At present, only weak AI exists. Strong AI and superintelligence are theoretically possible, even probable, but we’re not there yet. Understanding the differences between these forms of AI is essential to analyzing the potential risks and benefits of this technology. There are a whole range of concerns that correspond to different kinds of AI, some more worrisome than others.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Stem cell therapy remains a form of treatment

There is a picture of stem cell therapy: It is in harmony with the body’s own way of functioning. Damaged tissue is regenerated as the body always regenerates tissue: through stem cells maturing into new body cells.

Patients can then hope for a body without a trace of disease: a healed body that takes care of itself as a healthy body does. It is almost as if we were not dealing a treatment at all, for the body restores itself, as it always does.

Stem cell therapy is certainly an important step towards effective treatment of several currently incurable diseases. The methods can also be said to be based on the body’s own way to regenerate tissue.

Nevertheless, I think we should emphasize that stem cell therapies are treatments next to others, with risks and benefits. Cells are transplanted into patients whose immune system can react. The implants may need to be checked regularly, or even be replaced. The transplantation can go wrong. And so on.

Stem cell therapy does not “transcend” all disease treatment hitherto by supporting the body’s own way of healing itself. We are still dealing with treatments of patients, rather than with “salvation from disease.”

Rhetoric of salvation is dangerous. It invites magicians and our faith in them. It justifies sacrifices to the benefit of Mankind. It disturbs our judgement.

Pär Segerdahl

This post in Swedish

The temptation of rhetoric - the ethics blog

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.