Abstract
Dear Editor:
With great interest, we have read the scoping review of El-Sourady et al. 1 End-of-life discussions in patients with Huntington's disease (HD) are very difficult, and initiating advance care planning is extremely important to guarantee quality of life and—equally important—quality of dying. An aspect touched upon briefly is that of euthanasia and physician-assisted death.
One of the studies mentioned in their article concluded that “HD patients may welcome frank discussions of assisted dying.” We underscore this perspective, and in our personal experience, a patient who is informed that his or her physician will perform euthanasia when the patient considers this necessary can indeed find peace of mind. Since an increasing number of countries allow assisted suicide and euthanasia, it can be envisioned that an increasing number of patients suffering from HD will request this dignified way of death.
In Belgium, in 2019, 230 (8.7%) of 2656 patients who underwent euthanasia suffered from a neurodegenerative disease. In Canada, neurological pathology as the main condition resulted in medical assistance in dying in 774 (10.2%) of 7595 patients in 2020. In the Netherlands, it was neurodegenerative disease in 458 (6.6%) of 6938 patients in 2020. The exact numbers remain elusive however, since these countries do not provide details on how many patients suffered from HD.
Since patients with HD die at a young age, from a perspective of a meaningful death, they might search to give meaning and hope to their suffering.2,3 In our experience, from an altruistic endeavor, patients with HD have sought to help others despite their own ordeal. From 2012 until present, seven Dutch patients with HD have initiated a request to donate their organs after euthanasia. During this period, ∼80 patients donated their organs after euthanasia in the Netherlands.
Organ donation after euthanasia is possible in Belgium, the Netherlands and Canada. 4 To be able to donate, patients had to undergo several preparatory investigations to check the quality of their organs, and they had to die in the hospital to make a swift transportation to the operating room after circulatory arrest possible. However, these efforts made it possible for these patients to donate their organs to others in need, and thus to create something positive from their suffering by helping others in need.
Preliminary studies have demonstrated that organs donated after euthanasia in general function adequately in their recipients. About 10% of all patients seem to be medically eligible to donate their organs, whereas malignancy is a contraindication. 5 After organ donation after euthanasia, which is a type of donation after circulatory death, it is possible to donate the liver, kidneys, lungs, and pancreas. In the Netherlands, a trial has started to perform heart donation as well. 6
The authors of the scoping review correctly state that further studies are needed to examine the benefit of primary palliative care education and integration of specialist palliative care for these patients and their caregivers. We believe that organ donation after euthanasia can be an important perspective that is yet to be explored, for example, by studying the views of HD patients, their proxies, and involved health care professionals on this topic.