Latest news with #NationalPalliativeCareWeek
The Advertiser
17-05-2025
- Health
- The Advertiser
'They give me goosebumps': simple joys, special moments for dying kids
When little ones die, it's a devastating time for families. There's pain, suffering and emotion, but there's people who can help. Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care". "Our role is to support any child or young person with a life-limiting illness," Ms Scully said. Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death. "We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said. There are many poignant moments. "There are certainly things that give me goosebumps," Ms Scully said. "It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died. "There are those intangible things that happen but are hard to measure." Simple joys and helping children live their best lives were important. "We have little babies who get pleasure from having a bath and soaking in warm water," she said. "For some kids, it's getting to school to see their friends. For others, it's being able to go outside." The service helps children ease pain and suffering. "Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness. "It could be fear and anxiety. We manage that. "There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management." Some children are fed through tubes in their tummies. "They aren't able to eat and taste things. Often we will talk to families about risk versus benefit. "For some kids, having a little taste of something gives them pleasure, even if they're not swallowing." Some kids are fatigued. "They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?" Humour plays a big part. "People often say it must be so depressing, but we have so much laughter. "Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine. "There's a lot of banter and happiness that goes on." Paediatric palliative care can be long term. "We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well. "We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy." When little ones die, families can see their bodies at John Hunter Hospital's mortuary. "The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said. The Minns government is boosting paediatric palliative care funding to about $80 million over four years. "Some of this funding has gone to improve the mortuary area for families," Ms Scully said. "A more calming and supportive space for families is important to us." When little ones die, it's a devastating time for families. There's pain, suffering and emotion, but there's people who can help. Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care". "Our role is to support any child or young person with a life-limiting illness," Ms Scully said. Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death. "We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said. There are many poignant moments. "There are certainly things that give me goosebumps," Ms Scully said. "It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died. "There are those intangible things that happen but are hard to measure." Simple joys and helping children live their best lives were important. "We have little babies who get pleasure from having a bath and soaking in warm water," she said. "For some kids, it's getting to school to see their friends. For others, it's being able to go outside." The service helps children ease pain and suffering. "Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness. "It could be fear and anxiety. We manage that. "There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management." Some children are fed through tubes in their tummies. "They aren't able to eat and taste things. Often we will talk to families about risk versus benefit. "For some kids, having a little taste of something gives them pleasure, even if they're not swallowing." Some kids are fatigued. "They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?" Humour plays a big part. "People often say it must be so depressing, but we have so much laughter. "Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine. "There's a lot of banter and happiness that goes on." Paediatric palliative care can be long term. "We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well. "We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy." When little ones die, families can see their bodies at John Hunter Hospital's mortuary. "The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said. The Minns government is boosting paediatric palliative care funding to about $80 million over four years. "Some of this funding has gone to improve the mortuary area for families," Ms Scully said. "A more calming and supportive space for families is important to us." When little ones die, it's a devastating time for families. There's pain, suffering and emotion, but there's people who can help. Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care". "Our role is to support any child or young person with a life-limiting illness," Ms Scully said. Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death. "We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said. There are many poignant moments. "There are certainly things that give me goosebumps," Ms Scully said. "It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died. "There are those intangible things that happen but are hard to measure." Simple joys and helping children live their best lives were important. "We have little babies who get pleasure from having a bath and soaking in warm water," she said. "For some kids, it's getting to school to see their friends. For others, it's being able to go outside." The service helps children ease pain and suffering. "Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness. "It could be fear and anxiety. We manage that. "There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management." Some children are fed through tubes in their tummies. "They aren't able to eat and taste things. Often we will talk to families about risk versus benefit. "For some kids, having a little taste of something gives them pleasure, even if they're not swallowing." Some kids are fatigued. "They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?" Humour plays a big part. "People often say it must be so depressing, but we have so much laughter. "Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine. "There's a lot of banter and happiness that goes on." Paediatric palliative care can be long term. "We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well. "We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy." When little ones die, families can see their bodies at John Hunter Hospital's mortuary. "The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said. The Minns government is boosting paediatric palliative care funding to about $80 million over four years. "Some of this funding has gone to improve the mortuary area for families," Ms Scully said. "A more calming and supportive space for families is important to us." When little ones die, it's a devastating time for families. There's pain, suffering and emotion, but there's people who can help. Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care". "Our role is to support any child or young person with a life-limiting illness," Ms Scully said. Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death. "We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said. There are many poignant moments. "There are certainly things that give me goosebumps," Ms Scully said. "It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died. "There are those intangible things that happen but are hard to measure." Simple joys and helping children live their best lives were important. "We have little babies who get pleasure from having a bath and soaking in warm water," she said. "For some kids, it's getting to school to see their friends. For others, it's being able to go outside." The service helps children ease pain and suffering. "Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness. "It could be fear and anxiety. We manage that. "There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management." Some children are fed through tubes in their tummies. "They aren't able to eat and taste things. Often we will talk to families about risk versus benefit. "For some kids, having a little taste of something gives them pleasure, even if they're not swallowing." Some kids are fatigued. "They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?" Humour plays a big part. "People often say it must be so depressing, but we have so much laughter. "Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine. "There's a lot of banter and happiness that goes on." Paediatric palliative care can be long term. "We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well. "We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy." When little ones die, families can see their bodies at John Hunter Hospital's mortuary. "The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said. The Minns government is boosting paediatric palliative care funding to about $80 million over four years. "Some of this funding has gone to improve the mortuary area for families," Ms Scully said. "A more calming and supportive space for families is important to us."
News.com.au
15-05-2025
- Business
- News.com.au
Health Check: Amplia shares surge on pancreatic cancer trial results; Immutep offers hope
Amplia says it has reached the requisite level of 'partial responders' in its mid-stage pancreatic cancer study Immutep reports 'remarkable' response rates in a German-based lung cancer trial Paradigm wins US ethics approval for knee osteoarthritis trial Given it's National Palliative Care Week, it's apt that two drug developers have posted hopeful trial updates pertaining to two of the most deadly cancers. Amplia (ASX:ATX) reports the latest results from its ongoing phase Ib/IIa pancreatic cancer trial are 'superior to chemotherapy alone'. The trial, dubbed Accent, is testing Amplia's narmafotinib (AMP-945), a focus kinase (FAK) inhibitor. The study combines AMP-945 with two widely used chemotherapies. Amplia confirmed a 'partial response' in 15 patients. That's "a level of response sufficient to demonstrate that the combination of narmafotinib and chemotherapy is superior to chemotherapy alone'. A partial response means a tumour has shrunk more than 30%, with the benefit sustained for two months or more. 'As pancreatic cancer is highly aggressive, it is extremely rare for patients to achieve a complete response,' the company says. Under the open-label trial design, all patients receive narmafotinib and the standard of care chemo, with the results compared to historic data. Since January 2024, Amplia has enrolled 55 advanced pancreatic cancer in the study, with 21 patients still involved. The company says 15 out of 50 patients would be enough to demonstrate efficacy 'with reasonable confidence'. FAK inhibitors are especially relevant for fibrotic tumours such as pancreatic and ovarian cancer. Amplia expects to release top-line data from the fully recruited trial in around October this year. The trial is being conducted at seven sites in Australia and five sites in South Korea (which, not coincidentally, has a high rate of pancreatic cancer). Immutep's efti spurs hefty share surge Immutep (ASX:IMM) shares bounced up to 11% this morning after the cancer immunotherapy developer reported 'remarkable' patient response rates in a German lung cancer trial testing its lead compound, efti. The trial, Insight 003, enrolled patients with advanced or metastatic non-squamous non-small cell lung cancer (NSCLC). Proprietary to Immutep, efti (eftilagimod alfa) is a protein called Lymphocyte Activation Gene-3 (LAG-3), which stimulates the body's immune response to cancer. In a triple combo approach worthy of a Hungry Jack's menu, the subjects were delivered efti alongside the immune checkpoint inhibitor Keytruda and standard chemo. Admittedly, Immutep's dense announcements are too much for your scribe's frazzled synapses. Let's just say there's an interplay with PD-L1, a predictive biomarker expressed in cancers including lung and melanoma. PD-L1 is typically expressed on healthy cells and acts as the 'brake' preventing immune cells from attacking healthy tissues. High PD-L1 expression means the cancer cells can evade the immune system. While immune checkpoint inhibitors have revolutionised cancer treatment, as many as 80% of NSCLC patients do not respond to anti-PD-L1 monotherapy. The trial results showed a 60.8% response rate – the incidence of cancers shrinking or disappearing – compared with 48% for historical control data. Encouragingly, the triple combo worked best for patients with a PD-L1 score below 50% - a 59.6% response rate compared to 40.8% for the control data. 'These patients … have a high unmet need and represent over two-thirds of the NSCLC patient population,' the company says. The study is an adjunct to Immutep's main game: a pivotal phase III NSCLC combination trial, Tacti-004. 'Across two trials we have now efficacy data from 165 patients with NSCLC who have been treated with efti and Keytruda, either with or without chemotherapy,' Immutep chief Marc Voigt says. 'In multi-national settings, efti has generated consistent and remarkable improvements in response rates.' The investigator-led Insight-003 trial is being carried out at the Frankfurt Institute of Clinical Cancer Research and other German centres. Immutep is evaluating efti for other solid tumours including head and neck squamous cell carcinoma (HNSCC) and metastatic breast cancer. The US Food and Drug Administration (FDA) has bestowed fast track designation for efti, for first-line treatment of HNSCC and NSCLC. Paradigm gets the US go-ahead for pivotal knee trial Paradigm Biopharmaceuticals (ASX:PAR) has won US ethics approval to start its long-awaited phase III trial for knee osteoarthritis (OA), availing of a new streamlined procedure. The company plans to enrol 466 patients with moderate to severe OA in the pivotal trial, across 55 US sites. The first subject should enlist in the September quarter. Paradigm's treatment is an injected, repurposed drug candidate called pentosan polysulphate sodium, or iPPS. A central review board granted the ethics approval, which obviates the need for site-by-site clearance. The FDA approved the trial protocol in November last year. Australia's ethics gatekeeper also has granted approval, allowing Paradigm to initiate 10 clinical sites here. Patient recruitment is underway. The company cites a poultice of real-world evidence about iPPS's efficacy – notably former football with dodgy knees. But regulators want to see a randomised, double-blind, placebo-controlled effort, as per the Paradigm trial. Knee OA affects millions of people, yet there's no effective treatment. The company hopes an approved drug will reduce opioid use. With its anti-fibrotic action, iPPS may go further than just alleviating the symptoms and improve the fundamental condition of the joints. As at the end of March Paradigm had cash of $24.5 million – not enough to fully fund the trial. But in late January the company announced loyalty options, exercisable at 65 cents by February next year. Add-on 'piggyback' options are exercisable at $1 by February 2028. With Paradigm shares trading at just over 30 cents these options are not in the money, but if fully exercised would raise up to $112 million. Pause for thought Shares in HeraMED (ASX:HMD) and Chimeric Therapeutics (ASX:CHM) have entered trading halt today. The developer of foetal monitoring device, Heramed expects to issue a material update on its 'go-to-market strategy in the US due to changes in the business environment'. We'll know more on Monday. Cancer immunology player Chimeric has requested a 'temporary halt pending a further announcement'. Chimeric shares have been hammered by the healthcare upheaval in the US, where the company carries out third-party funded trials.
SBS Australia
12-05-2025
- Health
- SBS Australia
Sparking conversations around culturally appropriate end-of-life care
Sparking conversations around culturally appropriate end-of-life care Published 12 May 2025, 9:03 am As a family member approaches the end of their life, people in migrant communities can face special challenges. Culturally appropriate customs and traditions related to death and dying are a focus in National Palliative Care Week, now in its 30th year. This story has been produced in collaboration with SBS Greek.
Montreal Gazette
08-05-2025
- Health
- Montreal Gazette
Opinion: As a nurse and as a person, my life is richer working in palliative care
As a nurse, my transition from the emergency room to a palliative care residence has been both humbling and somewhat disturbing. From my experience, in the ER, we stress mostly curative and life-saving measures without much regard or time to spend on symptom management, empathy or positive communication with the loved ones of the patients whose lives we are trying to save. I've seen many very good emergency room doctors who are masters at diagnosing and then saving patients' lives — but seem almost incapable of managing those whose illness have progressed beyond the point where they can be cured. One would think that with our rapidly aging population, medical schools would stress the importance of palliative care to their students and make learning opportunities mandatory. A 2020 study published in the Canadian Medical Association Journal suggests this is not the case. It found that of Canada's 17 medical schools, undergraduate palliative care rotations were mandatory at two schools, optional at 13 and not available at two others. When I was in nursing school some 20 years ago, I can remember little, if any, importance put on treating patients in palliative care. The training was based on spotting signs and symptoms that could help diagnose and cure a patient. Judging by my interactions with young nurses in more recent years, I'm not sure things have changed all that much. I suppose we shouldn't be surprised by this culture in health care. That's what we tend to see on TV in shows like The Pitt and other series about ERs and hospitals. Saving a patient's life is portrayed as being glamorous and heroic, while a patient 'being palliative' is often seen as negative and associated with the abandonment of hope. Contrary to what appears to be the popular belief that working in palliative care must 'be depressing' — 'all you do is give morphine,' my ER pals often say — the truth is quite the opposite. Palliative care is based on improving quality of life and treating all symptoms — physical, psychological, spiritual and social. Drugs used in palliative care are based on close supervision of symptoms and patient needs. With help from specialized doctors, an experienced team of nurses, patient-care attendants, supportive care workers and volunteers, my life both as a nurse and a human being has become richer working in palliative care as I am surrounded with vivid lessons of humanity and new types of hope each day. As we wind up National Palliative Care Week in Canada (May 4-10), it's a perfect time for nursing and medical schools to recognize there is a need for more knowledge about palliative care. Let's make sure that empathy, humanity, critical thinking, communication and teamwork are seen as a cornerstone of health-care education in this country. Nathan Friedland has been a nurse for 20 years and currently works at a palliative care residence. He lives in Roxboro.
