The problem

There remains a shortfall of organs available for donation in spite of an increase of 25% in donation rates from deceased donors.1 A recent report predicted that patients will continue to die while on the transplant list even if the Organ Donation Taskforce achieves an increase in the number of donors to its intended 50% in 2013.1 There were 7800 patients on the UK transplant list, and 2783 were suspended because the patients were too unfit or unsuitable for a transplant in the period 1 April 2010 to 31 March 2011.2 A total of 3740 organ transplants were performed in the same period. The number of donations from brainstem-dead patients has continued to increase, but there remains a shortfall of donors.2

Elective ventilation

The process of elective ventilation in 1988 to remove organs from those deemed to die 3 was arrested with the declaration from the Department of Health in 1994 that it was unlawful.4 ,5 The reasons were that the patients were not declared dead and it was judged not to be of benefit to them. It was viewed that to ask the public to donate organs before death was difficult, but to ask them to donate organs in a time of inevitable death and be ventilated for this purpose was viewed with reservation. A possible solution to the legal quagmire on elective ventilation would be to obtain advance directives. This manoeuvre would have the potential to make elective ventilation lawful,6 or refuse the intervention in an otherwise incompetent patient.7

Donations from patients with primary CNS tumours

One possible choice of donor for organs that appears under-referred and/or unaccepted is patients with primary central nervous system (CNS) tumours. The median survival rate of a patient with a WHO grade 4 glioma (glioblastoma multiforme, GBM) is approximately 12 months with treatment.8 With advances in treatment, there have been some improvements in survival.9–11 These patients have treatments with all modalities including reoperations for recurrences, but inevitably, a time comes when palliative treatment is begun. Patients then die at home or in palliative institutions. Death is usually due to inevitable recurrence, raised intracranial pressure, coning and coma.10 It may vary from weeks to minutes.

Could such patients be organ donors? An article in Transplantation12 recommended the use of donors with primary CNS tumours because of the low risk of extraneural metastases. Of 177 donors of whom 33 had a high-grade primary CNS tumour, none had metastases. In 448 recipients of 495 organs, none had evidence of transmission over a minimum follow-up period of 5 years. There was no difference in patient survival for recipients of a kidney, liver, cardiothoracic organ or renal graft survival between recipients of transplants from donors with or without a CNS tumour over a 15-year period.12 ,13 Nonetheless, there remain reports of metastatic transmission.14 It was attempted to calculate the risks of transfer with transplantation for WHO grades 4 and 3 tumours, and estimated to be 2.2% and ‘intermediate’, respectively, with an upper 95% CI limit of 6.4% for grade 4 lesions, and 1.5% for all other primary tumours. Primary CNS lymphomas were excluded, and their use contraindicated.13

Usually, when a patient presents, or is referred with a possible intracranial mass, a CT and, sometimes, an MRI scan is performed. If confirmed, the patient is referred to a neurosurgeon who reviews the case in the neuro-oncology multidisciplinary team meeting with a neuroradiologist, a neuropathologist, a neuro-oncologist and other affiliated members. A treatment plan is formulated and then instituted. The patient is either offered palliative treatment or a permutation of biopsy, surgery, radiotherapy and chemotherapy. The patients and their families are counselled and there is much support for them. Soon there will be a time however, when the patients and their families come to the realisation that the inevitable is near. Whatever treatment is instituted with the present means it is in vain. From the time the patients learn of their prognosis there will be a period of reflection, hope, despair, and acceptance of their inevitable fate. In these last moments most will make a will, practise their faiths, fulfil their duties and live life to the full, health allowing, this being against the knowledge of deep hopelessness and resentment. When death comes, it is in the form mentioned.

Organ donation from patients with primary brain tumours seldom occurs and, at present, is confined to those patients who first present in a coma with no brainstem reflexes from irreversible raised intracranial pressure. In this situation, patients are ventilated and stabilised until the diagnosis is clear. If the deterioration is deemed irreversible, either treatment is withdrawn or brainstem death tests are performed, and families are approached for consent to donation of organs.

The debate

Could patients with primary CNS tumours consent in advance to organ donation and elective ventilation? The question of how and when a patient with a primary CNS tumour should be approached is a difficult one. It is and would be unacceptable and insensitive to ask patients who are in turmoil to donate organs and to have elective ventilation in their last moments. This is an approach that would understandably receive hostile criticism from patients, their representatives, professional bodies and other authorities, and be deemed reprehensible. A more acceptable alternative approach might be to present information in a passive form posted in neuro-oncology outpatients, or made available in pamphlets with, perhaps, statements such as ‘Did you know you could still donate your organs even if you had a brain tumour?’ With the knowledge that their treatment is palliative, patients (and their relatives) would at some point come to the realisation that their predicament is destined. When this dawns on them after completion of all their treatments, patients may decide to make further enquiries into the matter of organ donation. They would then be informed on the process and counselled as deemed appropriate. The patients will have understood and been asked to consent to donation of their organs which would occur in their last comatose state, and to achieve this, be made aware that they would be ventilated until brainstem tests confirm death. Perhaps ‘Intensive Hospices’ could be created which would have adjoining transplantation facilities for this very sensitive purpose. It would allow patients to transcend with dignity and a purpose that their loss was not in vain. If they wished to proceed, the patients would be referred to the multidisciplinary transplant, neuroanesthetic and neurosurgical teams. A final decision would then be made, and arrangements implemented when the moment of death approached for those who chose to donate their organs, and every allowance would be made for a change of heart. It is at this juncture that patients may choose to go on the organ donor register if not already on it and/or make an advance care statement. In obtaining an advance care statement, there will be some patients, due to the location, local infiltration, and so on, of the tumour, who may be deemed not to have capacity. Where there is doubt, perhaps a psychiatrist can give an opinion if required. Whatever the method of consent, patients (and their families) must be treated with the utmost respect to the act of organ donation, and it should be viewed as a holistic approach to their treatment.

In the absence of dedicated hospice facilities, for those who decide to donate, the family members, if the patient is at home, or the health staff from the palliative care team in a care home, can contact the transplant team when the time approaches. They will then coordinate with the interdisciplinary neuroanesthetic, neurosurgical and palliative care teams for elective ventilation, brainstem death tests, secondary survey in the unlikely event of metastases and organ retrieval. The important point is that an advance care statement is attained from the patient and is available. Those who decide not to donate can spend their last moments with their families either at home or in a palliative institution. Whatever the decision the patients make, their dignities must be respected.

This manoeuvre will require public debate. It will need the input and expansion of a number of services. It is accepted that there will be resistance because death and organ retrieval are sensitive ethical matters of import. It should not be shunned because it may afflict any one of us  one day, and difficult decisions are better debated and made in times where logic and reason prevails over emotion and attitudes. Until we have organs that we can grow, or have transgenic sources, it would seem to be a way forward to increase the number of donors. The concept can be extended to a number of different CNS tumours,8 and with debate and education it can become acceptable, but such alternatives must be viewed to be a transition source. The altruistic donor act of these patients is one hope for those recipients who wait in vain.