Organ donation after cardiac death in amyotrophic lateral sclerosis

Toossi, Shahed; Lomen‐Hoerth, Catherine; Josephson, S. Andrew; Gropper, Michael A.; Roberts, John P.; Patton, Kim; Smith, Wade S.

doi:10.1002/ana.22525

Cited by 11 publications

(17 citation statements)

References 3 publications

(2 reference statements)

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“…This is a high price to pay for most ALS patients, though it has happened at least once, where the patient said “I am glad that in spite of my disease, there is still something I can do to help others in a significant way. ALS is preventing me from accomplishing what I wanted to do in my life, but hopefully, my donation will give others a chance to live out their dreams.” 13 …”

Section: Discussionmentioning

confidence: 99%

Physician perceptions about living organ donation in patients with Amyotrophic Lateral Sclerosis

Ansari

Bromberg

Gibson

2017

Clinical Neurology and Neurosurgery

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Objectives Patients with Amyotrophic Lateral Sclerosis (ALS) have expressed desire to become living organ donors but are unable to do so with current organ donation policies. Our objective is to assess ALS patient's interest in organ donation, and perceived concerns of this practice by ALS neurologists. Patients and Methods An electronic survey was administered to ALS neurologists across the United States regarding living organ donation in ALS patients prior to respiratory failure. Results 52 complete responses were received from 121 invites. 67% (35/52) of neurologists expressed no concerns about living organ donation in ALS patients, and 33% had concerns. The concerns related to respiratory failure, anesthesia exposure and renal dysfunction. With their concerns addressed, 71% of neurologists reported that they would endorse living organ donation. 49% of neurologists reported being asked by a patient for information regarding living organ donation. ALS neurologists felt that 22.8% of ALS patients (median 19%) would be interested in learning more about organ donation, while only 6% of neurologists broach this subject with their patients. Conclusion Our results indicate that 1 in every 4 ALS patients may be interested in exploring options for living organ donation, and this topic is not routinely addressed by ALS clinics. These results indicate an unexplored area of patient interest. To honor a patient's wishes to donate, the transplant community will have to accommodate living organ donation from terminally ill patients, and address neurologist concerns. Such a practice could benefit two groups of patients.

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Section: Discussionmentioning

confidence: 99%

Physician perceptions about living organ donation in patients with Amyotrophic Lateral Sclerosis

Ansari

Bromberg

Gibson

2017

Clinical Neurology and Neurosurgery

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“…The cDCDD decisions arrived at over time by competent patients in the terminal phase of a long-standing progressive musculoskeletal, pulmonary, or neurological condition differ fundamentally from cDCDD decisions made by patients after a recent acute injury (Patterson et al 1993;Toossi et al 2012). Given the short duration of both the injury and donation decision, first-person consent for cDCDD is cause for concern.…”

Section: Cdcdd Consent In the Patient With Capacity Or Potential Capamentioning

confidence: 97%

“…However, this group has the potential to grow and includes patients with conditions such as amyotrophic lateral sclerosis, high cervical spine injury, and locked in syndrome (Anderson et al 2010;Sulmasy 2012;Toossi et al 2012). In such cases, cDCDD requires the highest level of evidence that the patient has made an informed decision (HRSA 2013), especially given two complicating factors:…”

Section: Cdcdd Consent In the Patient With Capacity Or Potential Capamentioning

confidence: 99%

Addressing Consent Issues in Donation After Circulatory Determination of Death

Overby

Weinstein

Fiester

2015

The American Journal of Bioethics

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Given the widening gap between the number of individuals on transplant waiting lists and the availability of donated organs, as well as the recent plateau in donations based on neurological criteria (i.e., brain death), there has been a growing interest in expanding donation after circulatory determination of death. While the prevalence of this form of organ donation continues to increase, many thorny ethical issues remain, often creating moral distress in both clinicians and families. In this article, we address one of these issues, namely, the challenges surrounding patient and surrogate informed consent for donation after circulatory determination of death. First we discuss several general concerns regarding consent related to this form of organ donation, and then we address additional issues that are unique to three different patient categories: adult patients with medical decision-making capacity or potential capacity, adult patients who lack capacity, and pediatric patients.

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“…The policies of the Organ Procurement Transplant Network, which regulates all OPOs in the USA, clearly state that when the case involves a conscious patient, the OPO must confirm that the healthcare team has assessed the patient's competency and capacity to make decisions about the withdrawal of LST and other medical procedures 16. cDCD is therefore permitted when patients are conscious, and some cases have been reported 17 18…”

Section: Cdcd In the Context Of A Conscious Decision To End Lifementioning

confidence: 99%

Organ donation after medical assistance in dying or cessation of life-sustaining treatment requested by conscious patients: the Canadian context

Allard

Fortin

2016

J Med Ethics

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In June 2016, following the decision of the Supreme Court of Canada to decriminalise assistance in dying, the Canadian government enacted Bill C-14, legalising medical assistance in dying (MAID). In 2014, the province of Quebec had passed end-of-life care legislation making MAID available as of December 2015. The availability of MAID has many implications, including the possibility of combining this practice with organ donation through the controlled donation after cardiac death (cDCD) protocol. cDCD most often occurs in cases where the patient has a severe neurological injury but does not meet all the criteria for brain death. The donation is subsequent to the decision to withdraw life-sustaining treatment (LST). Cases where patients are conscious prior to the withdrawal of LST are unusual, and have raised doubts as to the acceptability of removing organs from individuals who are not neurologically impaired and who have voluntarily chosen to die. These cases can be compared with likely scenarios in which patients will request both MAID and organ donation. In both instances, patients will be conscious and competent. Organ donation in such contexts raises ethical issues regarding respect for autonomy, societal pressure, conscientious objections and the dead-donor rule. In this article, we look at relevant policies in other countries and examine the ethical issues associated with cDCD in conscious patients who choose to die.

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Organ donation after cardiac death in amyotrophic lateral sclerosis

Cited by 11 publications

References 3 publications

Physician perceptions about living organ donation in patients with Amyotrophic Lateral Sclerosis

Physician perceptions about living organ donation in patients with Amyotrophic Lateral Sclerosis

Addressing Consent Issues in Donation After Circulatory Determination of Death

Organ donation after medical assistance in dying or cessation of life-sustaining treatment requested by conscious patients: the Canadian context

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