Dr Smriti Khanna, Mumbai
This article is featured by IAPC to mark World Brain Tumor Day, observed annually on 8th June to raise awareness about brain tumor and support those affected.
A 6-month-old orphan child got admitted with poor cry and progressive decrease in leg movements. He was admitted to the ICU and needed to be put on a ventilator because of worsening drowsiness and difficulty breathing. An MRI revealed a large tumor in the lower part of his brain (the brainstem) and the upper part of his spinal cord. The medical consensus was that this was likely to be an Atypical Teratoid Rhabdoid tumor, a rare but aggressive cancer with poor outcomes to treatment. Even so, the treating team of the pediatric ICU were faced with many dilemmas. Should we investigate further to confirm the diagnosis? Who should be the decision maker for this child? If further treatment is futile, can we withdraw life support?
A 40-year-old man with a glioma in the brainstem (the lower part of the brain responsible for important functions like heart rate, breathing, swallowing) gets admitted thrice to the ICU with breathing difficulty. Each time, he requires to be on the ventilator for 1-2 days only because the tumor presses on the breathing center and stops him from breathing. Some IV medications help ease the pressure and he starts breathing by himself again. All treatment options for his condition have been exhausted. During the second admission it is found that his swallowing is also affected, and he needs to be on a feeding tube. The tumor is slow growing, but it is here to stay. He does not know the prognosis of his condition and his family has decided for him till now. Should he remain on ventilator support? Who should take the decision about the feeding tube? How to break the news about his condition? Are there strategies we can put in place at home that can help prevent admissions?
As June 12 marks World Brain Tumor Day, this article explores the crucial palliative care needs of children and adults with brain tumors. The two cases highlighted above illustrate some of the significant gaps in care that these patients often face.
Some of the issues specific to these patients can be:
- A high burden of symptoms like feeding issues, seizures, difficulty breathing etc. can be very alarming for families to witness. Seizures may sometimes be difficult to control
- Disturbing side effects of brain radiation such as headache, short term memory loss, excessive fatigue and sleepiness
- A gradual or abrupt transition in the patient’s ability to think or make decisions for themselves
- Increased reliance on caregivers which they may not be prepared for
- Dilemmas faced by the family and the treating team regarding treatment modalities, when to stop curative treatment, place of end-of-life care
So how can we as palliative care professionals, effectively fill these gaps? Let’s examine the two cases we’ve described to identify practical solutions.
For the 6-month-old child, the PICU team called in legal support and the palliative care team to help resolve these ethical dilemmas. The legal team helped identify the appropriate orphanage authority who would serve as the key decision-maker. This key decision-maker was then invited to meet the multidisciplinary team, which included palliative care, neurology, neurosurgery, oncology and PICU teams. They reached the consensus that further treatment was not likely to be medically beneficial to the child. A joint decision was then made to forego further investigation and disease-directed treatment. With due diligence, the ventilator was withdrawn along with comfort care measures. The child passed away peacefully in hospital with his nurse by his side.
The palliative care team interacted with the 40-year-old man, during his second ICU admission. When breaking the bad news, taking due time and attention, they discussed his illness, prognosis, and the reasons behind his repeated admissions. They explained that breathing and feeding difficulties may recur. Communication was slow because his speech was affected.
He lived in a loving joint family with two younger brothers and his mother. His wife had passed away, and his daughter was a young college student.
He understood that the tumor was incurable, yet he was keen to continue living for his family’s sake, even if it meant depending on a PEG tube and tracheostomy. He underwent both procedures and home care was arranged for his additional medical needs. He is happy with his current quality of life and is planning his daughter’s education and marriage. The palliative care team has encouraged him to document his advanced care directive ensuring his wishes were legally recorded.
These cases focus on quality of life and supportive care but addressing them through different perspectives and questions.
- How can healthcare providers make appropriate decisions when patients lack the capacity to decide for themselves?
- If quality of life is a subjective phenomenon, how do we assist our patients with their medical decisions?
- What does a good death mean?
- What does supportive care and symptom relief mean for each of our patients?
These are some of the concerns we grapple with on a day-to-day basis as palliative care practitioners. No palliative care consultation is complete without addressing the quality of life, which essentially boils down to this question- what is a good life?
About the Author:
Dr Smriti Khanna is a pain and palliative care consultant practicing at Hinduja Hospital, Mumbai. Her special interests are children’s palliative care and neuro-palliative care.
Art credit: Roop Gursahani, Makarand Dambhare. Available for free download from Wikimedia Commons. Also available at: Gursahani R. Neuropalliative Care for India: Who, What, When, Where, Why, How? – National Medical Journal of India. 2022 Nov 1;35(6).
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