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Brain tumour awareness: The end counts too

Here in the United Kingdom, we have the worst survival rates for brain cancer in Europe, with just 14% of patients surviving for ten or more years. Whilst prognosis for most other types of cancer has improved, brain tumour survival rates have remained stagnant, with no game-changing new drugs being developed in the last fifty years.

As brain tumours progress, the aggressive nature of the disease becomes apparent. Patients may experience symptoms such as, drowsiness, seizures, and loss of vision in the end weeks of life. Due to the rapid deteriorative nature of cognitive function, brain tumours can be fatal and treatment options often run into a dead end. At this stage many people find it is important to focus on the patient and put their quality of life foremost. Palliative care should be regarded as another, yet just as important field of medicine, when a cure is no longer possible, to give everyone the opportunity to live life to the full. End of life care aims to support people in the last year of life, and to die with dignity.

Maintaining quality of life at the end stage is essential, however critical discussions around end-of-life care and advanced planning are often seen as a taboo subject. Or perhaps they are just too difficult? The brainstrust offers several guiding principles for caregivers, family, and patients to follow, when those challenging conversations arise:

  1. Even though it is difficult, plan as much as you can in advance. It will help ensure the patient’s wishes are known and respected.
  2. If the point comes when treatments are causing more harm than good, or not extending life or quality, then they should be stopped. The objective shifts from curing the disease to caring for the patient, to make them the most comfortable.
  3. Be firm. Know what you need in terms of support and care and don’t be afraid to voice your opinions. If you are confused or need advice, speak to your GP or charities for help.

But why, when no curable treatment is available, are so few patients receiving palliative care?

Palliative care can be administered in a dedicated unit at a hospital, in a hospice or at the patient’s home. In the eyes of the patients, receiving care at home is more favourable and quality of life is much easier to maintain. Implementing various practices as early as possible increases efficiency of this type of treatment and maximises advantages for the patient.

Brain tumours are categorised from Grades 1 to 4 depending on their severity, how fast they are growing, and likelihood of metastasis. Low grade tumours (grades 1 and 2) are mostly contained and do not pose a high threat of spreading. However, these tumours can be harmful and are not necessarily curable – rate of growth is simply slower. High grade tumours are much more aggressive and faster growing in nature. These malignant tumours can result in rapid deterioration, for example high grade glioma median survival is approximately 14.6 months. Since brain tumours often result in significant physical and mental impairment, patients tend to require higher levels of care. But why, when no curable treatment is available, are so few patients receiving palliative care?

Man, Woman, Elderly by MabelAmber. CC0 Creative Commons via Pixabay.

Medicare, the federal health insurance programme, estimates that 77% of high-grade glioma patients in hospice are enrolled for less than a week in the United States. This could be because many people are under the misconception that hospice care should only be used in the last few weeks of life or simply because of the image that surrounds it. Earlier referrals could be one method to ensure the wishes of patients’ and their families are fulfilled. It has been suggested that formal palliative care training is needed for healthcare professionals – as the number of referrals to hospice is dependent on the neuro-oncologist and whether or not they have undergone training.

While less than 2% of cancer research funding is spent on brain tumours, palliative care is much worse off with less than 0.5% of medical research funding being spent on end of life care research in England. Brain tumour research has a lot further to go, but priorities are in place. And ensuring patients’ quality of life is not compromised, is certainly on the agenda.

Featured image credit: Photo by Roman Kraft. CC0 public domain via Unplash.

Recent Comments

  1. J. Piscioneri

    This article should be read by every neuro-oncologist, every individual diagnosed with a brain tumor and their caregiver, and read by everyone fortunate enough not to have this disease in their midst. The suffering of those in the brain cancer community, most often experienced without palliative support until the last days – and often catching children in its vortex – is indescribable. The paltry resources provided to these hurting people, if understood by the rest of the world, would disqualify us from being able to call ourselves civilized. Many thanks to K. Sriharan for writing this article.

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