Finding the good in death

2018-10-09 06:00

Many of the families that walk through the door of Paedspal have heard a doctor tell them that “nothing more can be done” to treat childhood illnesses.

But through that door lies a world where there is “always something that can be done” to ease the suffering of children with incurable medical conditions, says Paedspal CEO Dr Michelle Meiring.

Based in Rondebosch, opposite the Red Cross War Memorial Children’s Hospital, Paedspal was opened in 2016 and looks to fill the gap in an “unaddressed need” of offering care and support to children dying from incurable diseases.

They treat a range of child patients, Meiring explains, with conditions ranging from cancers to congenital abnormalities – any diagnosis that is “life threatening or life limiting”.

“You can imagine: You’re a mother whose child has an inoperable brain tumour. Your child is dying. And you’re told: ‘Sorry, we can’t do anything’. You’d be devastated,” Meiring says.

“But [there is something that can be done]. Our team supports that mom. We relieve the child’s pain. We support the family. We help tell the other children that their sibling is dying.”

The organisation offers palliative care through a multidisciplinary team, which takes care of a patient’s “body, mind and spirit”. The team includes counsellors (including an art and music therapist), paediatricians, a social worker and an aromatherapist. Not only does Paedspal offer the ill child ways to manage pain and ongoing symptoms, but they also offer support to the family.

Siblings of the patients are given counselling to help them understand and cope with the death of their sibling and parents are educated on their child’s illness and prepared for any complications that may arise.

Doctors are trained to cure patients, Meiring explains, but when they can’t cure a patient, they often are unsure of what to do.

This is why advocacy work to have training and palliative care increased in the public health sector is a big part of their work, she says.

Meiring first realised the need for specialised paediatric palliative care after specialising in paediatrics at the Chris Hani Baragwanath Hospital in Johannesburg. She worked there in the late ’90s and early 2000s, during the height of the Aids pandemic.

“I had this experience one night with this little baby of four months old with full-blown Aids and who clearly wasn’t going to survive the night.”

As a young doctor, “doing [her] best to save lives” Meiring set about treating the baby to ensure it would stay alive until the next doctor’s shift.

She spent the night “running around” and using an array of treatments, involving numerous injections, to treat the baby.

“If I’d been realistic about it, what I was trying to do was impossible. The baby died at 07:00 in the morning, one hour before the handover.

“And I remember feeling angry with that baby: ‘The whole night I’ve been trying to save you, why couldn’t you stay alive one more hour?’. I realised how depersonalised I had become … I hadn’t realised the baby was dying and I’d inflicted pain to keep the baby alive.”

The mother had an “intense” reaction of grief, falling to the floor and wailing. Meiring then realised that she hadn’t prepared the mother for the baby’s death and that “there must be a better way to manage this”.

She began working with a local hospice to learn about palliative care and what she refers to as “a good death”.

“If something is inevitable, you have to do the best that you can. I can maybe [tell you what is a good death] is by telling you what a horrible death is: A death that comes out of the blue because nobody has warned you that it’s going happen, or it might be a death that occurs with a lot of suffering, pain or bleeding. A good death is one where the child (if old enough and psychologically able) knows that he’s dying and is prepared for that. His symptoms are managed and he’s not suffering from pain or difficulty breathing. His parents are prepared and have been counselled. The environment is conducive and there are caring people around him.”

This is one of the reasons Paedspal and the Rohan Blom Foundation are working towards the development of a hospice, aimed specifically at treating children currently in the care of Paedspal.

“When you are in a situation that is hopeless, someone’s still got to do something. It’s actually very satisfying to be able to pick families up out of a hopeless situation and get them through it intact. We can’t prevent dying and we have to make it better.”

V Paedspal is part of a network of organisations offering palliative care to children, called Patch. Patch aims to share knowledge, tools and opportunities with professionals to ensure the best care for children with life-threatening or life-limiting illnesses. Patch also offers support to families and caregivers. Patch will be the beneficiary of the Paedspal annual fundraiser, which will be held on Saturday 13 October. This year’s fundraiser is a ladies’ afternoon of treats, with a Mad Hatter’s theme. Tickets are available at Quciket. For more information, visit paedspal.org.za.

Many of the families that walk through the door of Paedspal have heard a doctor tell them that “nothing more can be done” to treat childhood illnesses.

But through that door lies a world where there is “always something that can be done” to ease the suffering of children with incurable medical conditions, says Paedspal CEO Dr Michelle Meiring.

Based in Rondebosch, opposite the Red Cross War Memorial Children’s Hospital, Paedspal was opened in 2016 and looks to fill the gap in an “unaddressed need” of offering care and support to children dying from incurable diseases.

They treat a range of child patients, Meiring explains, with conditions ranging from cancers to congenital abnormalities – any diagnosis that is “life threatening or life limiting”.

“You can imagine: You’re a mother whose child has an inoperable brain tumour. Your child is dying. And you’re told: ‘Sorry, we can’t do anything’. You’d be devastated,” Meiring says.

“But [there is something that can be done]. Our team supports that mom. We relieve the child’s pain. We support the family. We help tell the other children that their sibling is dying.”

The organisation offers palliative care through a multidisciplinary team, which takes care of a patient’s “body, mind and spirit”. The team includes counsellors (including an art and music therapist), paediatricians, a social worker and an aromatherapist. Not only does Paedspal offer the ill child ways to manage pain and ongoing symptoms, but they also offer support to the family.

Siblings of the patients are given counselling to help them understand and cope with the death of their sibling and parents are educated on their child’s illness and prepared for any complications that may arise.

Doctors are trained to cure patients, Meiring explains, but when they can’t cure a patient, they often are unsure of what to do.

This is why advocacy work to have training and palliative care increased in the public health sector is a big part of their work, she says.

Meiring first realised the need for specialised paediatric palliative care after specialising in paediatrics at the Chris Hani Baragwanath Hospital in Johannesburg. She worked there in the late ’90s and early 2000s, during the height of the Aids pandemic.

“I had this experience one night with this little baby of four months old with full-blown Aids and who clearly wasn’t going to survive the night.”

As a young doctor, “doing [her] best to save lives” Meiring set about treating the baby to ensure it would stay alive until the next doctor’s shift.

She spent the night “running around” and using an array of treatments, involving numerous injections, to treat the baby.

“If I’d been realistic about it, what I was trying to do was impossible. The baby died at 07:00 in the morning, one hour before the handover.

“And I remember feeling angry with that baby: ‘The whole night I’ve been trying to save you, why couldn’t you stay alive one more hour?’. I realised how depersonalised I had become … I hadn’t realised the baby was dying and I’d inflicted pain to keep the baby alive.”

The mother had an “intense” reaction of grief, falling to the floor and wailing. Meiring then realised that she hadn’t prepared the mother for the baby’s death and that “there must be a better way to manage this”.

She began working with a local hospice to learn about palliative care and what she refers to as “a good death”.

“If something is inevitable, you have to do the best that you can. I can maybe [tell you what is a good death] is by telling you what a horrible death is: A death that comes out of the blue because nobody has warned you that it’s going happen, or it might be a death that occurs with a lot of suffering, pain or bleeding.

“A good death is one where the child (if old enough and psychologically able) knows that he’s dying and is prepared for that. His symptoms are managed and he’s not suffering from pain or difficulty breathing. His parents are prepared and have been counselled. The environment is conducive and there are caring people around him.”

This is one of the reasons Paedspal and the Rohan Blom Foundation are working towards the development of a hospice, aimed specifically at treating children currently in the care of Paedspal.

“When you are in a situation that is hopeless, someone’s still got to do something.

“It’s actually very satisfying to be able to pick families up out of a hopeless situation and get them through it intact. We can’t prevent dying and we have to make it better.”

V Paedspal is part of a network of organisations offering palliative care to children, called Patch. Patch aims to share knowledge, tools and opportunities with professionals to ensure the best care for children with life-threatening or life-limiting illnesses. Patch also offers support to families and caregivers. Patch will be the beneficiary of the Paedspal annual fundraiser, which will be held on Saturday 13 October. This year’s fundraiser is a ladies’ afternoon of treats, with a Mad Hatter’s theme. Tickets are available at Quciket. For more information, visit paedspal.­org.za.

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