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child palliative care

'Our child deserves to die at home': Family of boy with cancer told palliative care not available in their area

Tipperary TD Michael Lowry read out a letter in the Dáil from parents of a boy with terminal cancer. / YouTube

A HARROWING LETTER from a family whose child has stage four cancer but who cannot get local palliative care was read into the Dáil record this afternoon.

Tipperary Independent TD Michael Lowry said the parents received a letter from the HSE informing them that community based pediatric palliative care in the southeast is not available.

As a result, the family make 14 journeys per week up and down to Dublin, where the child is under the care of Crumlin Children’s Hospital.

Reading out the letter, Lowry said all the parents want is for their child to be afforded the right to die at home.

They say to me, we’re writing this letter on behalf for seven year old son. It is something that no parent or family should ever have to contemplate in our situation.
At this point, our son has been battling stage four cancer for almost two and a half years. He has endured a grueling treatment schedule unfortunately due to the aggressive nature of the condition, he has relapsed and the disease is progressive.

“To our disbelief when we were informed that due to where we live, community pediatric palliative care services would not be available and that this has been the case for all terminally ill children in our area since the services were withdrawn in 2017.

“Today’s we have done everything in our power to ensure that our son’s care is home based,” the letter reads.

‘Right to die at home’

The parents of the boy go on to state in their letter:

To be clear, we want and expect our son afforded the opportunity to die at home and have the same access to community palliative care services that he would have if he was an adult in our own area or indeed a child in most other community areas in the country.

“It is unacceptable that our son may have fewer choices with regard to end of life care due to geographical, political, financial, or resource issues. Unfortunately, time is not on our side and as such, we need a response to be actioned urgently.”

Since diagnosis, the young boy has had numerous cycles of chemotherapy, has had one of his kidneys removed, is on high doses of chemotherapy, had a stem cell transplant and had 39 sessions of radiation as well as multiple bone marrow treatments and blood transfusions. He has also travelled abroad for treatment.

The parents write that he has had the best medical care available in Ireland and has “bravely fought every step of the way”.

Not a privilege but a right 

“Undoubtedly he is now in the last phase of his battle against this horrendous disease and the least that he deserves is the chance to die at home with his family, in his own community, surrounded by those who know and love him.

“It is not something that should be considered a privilege or something that we should have to question as parents when every moment that we have left together as a family is so precious. We are not looking for special treatment, just equity of care that our beautiful seven-year-old boy would have the same access to end of life care as adults in his community and as most other terminally ill children in the country have,” the letter reads.

Lowry appealed to Minister of State for Housing Malcolm Noonan, who was sitting in, as no senior or junior health minister was present for the debate, to help these parents urgently.

He said to be told by officials in the Department of Health and the HSE that you can’t bring your son home to die in his own home because the palliative care services will not allow it was unacceptable.

“I would ask you if you do anything else meaningful or positive this evening, I think you’d be doing this family a great service if you could knock some sense into the HSE services in this area and find a resolution and allow this boy to come home and enjoy the support, the comfort and the companionship of his mother and father and his brothers in his own home,” said the Tipperary TD.

Ceann Comhairle Sean O’Fearghail asked Lowry to table the case as a topical issue next week.

Describing it as a “heart rending story”, the Ceann Comhairle said he would guarantee it would be selected for hearing, adding “we will do our best to ensure that there are some of the ministers here from the Department of Health to deal with this because that is not something that should have to be brought on to the floor”.

Lowry said he had no alternative but to raise it in such a way today because of the urgency of the situation, stating that if this family has to wait for the matter to go through officials without the intervention of the health minister, he does not think they will get a result in time.

Noonan said he would speak to the the health minister about the case, stating it is an “absolutely heartbreaking story”.

He said his thoughts were with the family and young boy, stating that it is critically important that there is end of life care across the country.

The Journal has asked the Department of Health for comment.

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