Latest news with #palliativecare
Sky News
11 hours ago
- General
- Sky News
'Breaking point' as people in last 12 months of life occupy 'almost a fifth of Welsh hospital beds'
People in the last 12 months of their life occupy "almost a fifth of Welsh hospital beds", according to a end of life care charity. Marie Curie Cymru says end of life care in Wales is "at breaking point" and is calling on the next Welsh government to ensure high-quality care. The charity says that, for many, support could be better provided at home or close to home, as it launched its manifesto for next year's Senedd election at Cardiff Bay's Norwegian Church on Tuesday. Gareth Miles died at home in Llanddarog, Carmarthenshire, in September 2023. Mr Miles, who had Parkinson's disease, had spent 10 weeks in hospital before his last week. His daughters, Branwen, Eiry and Elen, are calling for better care at home for those who have a palliative or end-of-life care condition. "Once [her father] was in hospital, even though he was better after 10 days, he couldn't be discharged because he lost the care package," she said. "He was being supported by carers twice a day because of his Parkinson's and his arthritis, and without the carers, we would have been unable to care for him ourselves. "So he spent a long time in hospital, waiting for a care package to be reinstated and, while he was there, his condition deteriorated." While calling for "better links" between health and social care, Mrs Miles said the support from Marie Curie was "invaluable". "Without their support, my father would have been stuck in hospital and his death would have been very painful for all of us, in quite a distressing environment," she added. 'Surrounded by his family' Remembering her father fondly, she said he was a "great person" with a "very fulfilling life". "He saw himself as a very lucky man because, as well as being able to do a job that he loved, he also had family and friends that loved him," she added. "So it was just very sad then that he spent the end of his life in those circumstances. "But luckily, we were able to bring him home and he had what he would call a good death in the end, surrounded by his family. "My intention through sharing this just to hopefully raise awareness of the issue and hopefully make sure that other people are aware of the support that they have." Natasha Davies, senior policy manager for Marie Curie Cymru, told Sky News the palliative and end of life care system in Wales was at "breaking point" and "under immense pressure". "The result of that is that too many people are not able to access the care and the support that they need, when they need it, where they need it," she said. "I think what those experiences show us is the profound impact that getting this right can have, not just on the person who's terminally ill, but also on those close to them." Ms Davies acknowledged hospital would be "the right and best place" for some people to receive their care. "But for others, we know that those hospital admissions, particularly via emergency department, could be reduced or avoided," she added. The Welsh government said: "Good palliative and end of life care can make a huge difference to those with life-limiting illness, helping them to die with dignity, and help the grieving process for those left behind. "We provide more than £16m a year to make sure everyone has access to the best possible end of life care. This includes setting national standards, boosting community services and ensuring people receive the support they need. "We are working with health boards and local authorities, supported by monthly discharge data, to improve the safe discharge of patients from hospital. This applies equally to people requiring end of life care."
BBC News
a day ago
- General
- BBC News
End-of-life care in Wales 'at breaking point', says Marie Curie
People are living their final days "isolated, in pain and struggling to make ends meet" due to gaps in end-of-life care, a leading charity has said. Marie Curie said one in five hospital beds in Wales were occupied by people in the last year of their lives and "bold, radical" action was needed for services which were at "breaking point". One family said they had to fight to ensure their 85-year-old father could die peacefully at home rather than in a hospital ward. The Welsh government said it provided more than £16m a year to ensure people had access to the best possible end-of-life care. While the charity said a hospital setting is the best possible place for many palliative care patients, many want to spend their final days at home or in the community. Gareth Miles, 85, spent 10 weeks on a ward his family felt did not meet the needs of an older man living with Parkinson's disease. His daughter Eiry Miles said: "There were very lovely staff working on the ward, they were very kind to us, but he [Mr Miles] was in the wrong place."When we realised that Dad's life was coming to an end, we wanted conversations with him, quiet conversations. We wanted to express our feelings, express our love for him."Despite a "great" social worker also recognising home was the best place for Mr Miles, the family said a lack of carers in the community meant he was unable to return. "This situation clearly shows that there are not enough carers, that the profession is not funded sufficiently," added Ms Miles. With the help of Marie Curie , Mr Miles eventually returned to his family home in Carmarthenshire, which his family described as "priceless". Ms Miles added: "When Dad came home there was a change in him straight away, a peaceful feeling."When he laid on the bed at home, he just said 'oh, dyma braf' – 'this is nice' in Welsh - because it was just quiet and peaceful, there was birdsong outside and people he knew around him."Mr Miles died four days later in his home, exactly where he wanted to be. Marie Curie said gaps in care meant "too many people are spending their final days isolated, in pain, and struggling to make ends meet". "End of life care in Wales is at breaking point," said Senior Policy Manager Natasha Davies."Services and staff are struggling to deliver the care people need, when and where they need it. There is an urgent need for change."The charity recognised while hospital was the best place for many palliative care patients, better community and out-of-hours care would allow people to be cared for in their homes."It also means having meaningful conversations with dying people about their care preferences, so their wishes are heard and respected," added Ms Davies. The Welsh government said good palliative and end-of-life care could make a "huge difference" to helping people die with dignity. It said it provided more than £16m a year to make sure people had access to the best possible end-of-life care, including setting national standards and boosting community services.
Sky News
2 days ago
- General
- Sky News
'He didn't understand he was dying from cancer': Anonymous nurse reveals what her job is like
Dreaming of a new career? Each week, we speak to someone from a different profession to discover what it's really like. Today, the Money team chats to an NHS learning disability nurse - we agreed to make them anonymous so they could provide an unfiltered view of the job. I worked with a man with a severe learning disability who was dying of cancer... He didn't understand what this meant and just wanted to feel well and looked after. I worked with the oncologist, GP and local palliative care service to arrange a professionals meeting, advocating for the unique needs of this man. We were able to arrange for him to be at his "best" health for one last holiday, before being supported into a planned palliative care community bed with staff he knew, where he was supported to die with dignity in minimal pain. Without my support advocating on his behalf, he would have died in a hospital bed, without known staff, scared and alone, and would never have had the chance to have his last holiday. I will truly never forget him; it was humbling to be able to help in any way I could. You start on £30,000... Entry-level nurses start at NHS pay band 5, which equates to £29,970 (rising to £36,483). Progression is, of course, possible through developing skills and expertise, with experienced senior nurses earning £50,000+. The NHS pension is generous... Depending on salary, we can pay from 5-12% of our salary into pension, with the employer putting in 14.4% for all pensions. Pension and financial advice is also available to support retirement planning. This job is so varied... Learning disability nurses work with people who have a learning disability (and with their families and carers) to help them stay as healthy as possible throughout their lives. I could be supporting someone to understand and manage their diabetes or other complex health issues, helping someone to safely express their emotions or any distress, or supporting with future planning, which could be related to dementia, or their end-of-life wishes, and all this just in one day. A wide range of clinical skills is also required - including those relating to epilepsy, complex physical health, mental health, autism, forensic risk, dementia, and positive approaches to behavioural support. The NHS is really good with flexible working... There are so many different jobs... it can really work for different lifestyles. I work part-time currently (four days). On holidays, you start with 27 days, and after 10 years, you have 32 (plus bank holidays on top). One person I worked with had been in a hospital environment for 20 years... She described herself during that time as a flower that hadn't been watered. One of the most rewarding parts of the job is helping people to move back to their local area and live in community settings, ensuring the best support is available to maintain this. After successfully moving out of hospital, the woman later described herself as like a garden full of beautiful flowers in full bloom. If I could change one thing, it would be for people to know who we are... Learning disability nurses have the same clinical skills as other branches of nursing registrants but it is a lesser-known specialism and few people understand what we do. This means that fewer people enrol to be a learning disabilities nurse, making vacancies harder to fill. People with learning disabilities often have communication needs, anxieties, past negative experiences or other barriers to accepting help... As learning disability nurses, we pause, reflect and then try again using adapted and creative approaches to meet individuals' specific needs. Learning disability support does not get enough funding... this is a fundamental requirement if we are to support individuals to lead longer, happier and healthier lives. Capacity is always an issue... with increased demand being placed on services. Similarly, challenges in social care provision often have an impact on people's health and wellbeing, and, as a result, pressure on health services increases. There is also often a reliance on families and care providers to implement recommendations that have been made, which can prove challenging, as is ensuring that appropriate levels of support are in place. There continues to be inequitable access to healthcare generally, which learning disability nurses are instrumental in challenging to improve health outcomes for those with a learning disability. Laughter and smiles are more common than tears... when working with people who have a learning disability! One of my most memorable success stories... was supporting a young lady who needed eye surgery due to her failing eyesight. Initially, this lady declined surgery, but by using accessible information, she was able to understand why surgery was important and the impact that not having this could have on her quality of life. We discussed her fears, undertook some desensitisation work, and I worked with the hospital teams to make sure that her fears were listened to, and that adjustments to her treatment plan were made too. The operation was a success, and the lady regained some of her sight. A common misconception... is that people who have a learning disability are not able to learn new skills and are not able to make their own choices. With the right support, individuals are more than able to achieve positive change and have their voice heard.
National Post
2 days ago
- Health
- National Post
Son MAiD pioneer Kay Carter plans assisted death after terminal cancer diagnosis
Price Carter is planning to die this summer. Article content The 68-year-old has been diagnosed with stage 4 pancreatic cancer. He knows it will take his life eventually; before it does, he intends to die on his own terms with his family at his side. Article content 'I was told at the outset, 'This is palliative care, there is no cure for this.' So that made it easy,' he said in an interview from his home in Kelowna, B.C. Article content Article content Article content Price has finished a first assessment and said he expects the second assessment deeming him eligible for the procedure to be completed this week. He spoke openly and calmly about his final days and his decision to end his life. Article content 'I'm at peace with this, I truly am, and I would have been years ago,' he said. Article content It's been nearly a year since he first started experiencing symptoms and got a diagnosis. Until a couple of months ago, he said, he was swimming and rowing. He and his wife Danielle went golfing recently, playing best ball. Article content 'She dragged me down that course,' he said with a laugh. Article content But his energy is starting to fade. He knows how he wants the next step to unfold. Article content Article content It was more than 15 years ago that Price, along with his sisters Marie and Lee and his brother-in-law Hollis, surreptitiously made their way to Switzerland to be with their mother on her final day. Article content The 89-year-old was living with spinal stenosis and chose to go to a non-profit facility that provided medically assisted death. She became the 10th Canadian to do so. Article content At the time, assisted death was illegal in Canada. Kay Carter wrote a letter explaining her decision and her family helped draft a list of about 150 people to send it to after she died. She couldn't tell them her plans in advance because of the risk that Canadian authorities would try to stop her from going to Switzerland, or prosecute the family members who helped her. Article content When she got to the Dignitas facility, she finalized the paperwork, settled in a bed and chased down the barbiturate that would stop her heart with Swiss chocolate. Article content
CBC
3 days ago
- General
- CBC
Son of woman who inspired Canada's assisted dying law choosing to die on his own terms
Social Sharing Price Carter is planning to die this summer. The 68-year-old has been diagnosed with stage 4 pancreatic cancer. He knows it will take his life eventually; before it does, he intends to die on his own terms with his family at his side. "I was told at the outset, 'This is palliative care, there is no cure for this.' So that made it easy," he said in an interview from his home in Kelowna, B.C. Carter said he's always known that medical assistance in dying would be an option "that I would exercise if I could, if needed to." He has that option, in large part, because of his mother. Kay Carter's name is on the landmark Supreme Court of Canada case that gave Canadians the right to choose a medically assisted death just over a decade ago. Price has finished a first assessment of his eligibility for the procedure and said he expects the second assessment to be completed this week, clearing the way for him to end his life. He spoke openly and calmly about his final days and his decision. "I'm at peace with this, I truly am, and I would have been years ago," he said. It's been nearly a year since Price first started experiencing symptoms and got a diagnosis. Until a couple of months ago, he said, he was swimming and rowing. He and his wife Danielle went golfing recently, playing best ball. "She dragged me down that course," he said with a laugh. But his energy is starting to fade. He knows how he wants the next step to unfold. Family fought for mother It was more than 15 years ago that Price, along with his sisters Marie and Lee and his brother-in-law Hollis, surreptitiously made their way to Switzerland to be with their mother on her final day. The 89-year-old was living with spinal stenosis and chose to go to a non-profit facility abroad that provided medically assisted death. She became the 10th Canadian to do so. At the time, assisted death was illegal in Canada. Kay Carter wrote a letter explaining her decision and her family helped draft a list of about 150 people to send it to after she died. She couldn't tell them her plans in advance because of the risk that Canadian authorities would try to stop her from going to Switzerland, or prosecute the family members who helped her. When she got to the Dignitas facility, she finalized the paperwork, settled in a bed and chased down the barbiturate that would stop her heart with Swiss chocolate. "When she died, she just gently folded back," Price said. After a few minutes, one of the attendants from the facility walked over to the door, "and the curtains billow out, and she says, 'There, her spirit is free,'" he said. "If I was writing the movie, I wouldn't change that." He said the memory makes him cry today, though not from sadness. The cancer, and the treatment, have made him emotional — the experience itself was beautiful. "I wish for my children that they can see my death like I did my mom's," he said. He wants his wife, Danielle, and his kids to be there for his final moments. His children — Lane, Grayson and Jenna — live in Ontario. They're all busy, he said, so when the time is right he'll try to find a date that works for everyone. For now, he's doing a lot of reading. "I'm just gonna keep hanging on, day by day, and enjoying my Danielle." Long road after 2010 The Carter family had a long road after Kay's death in January 2010. Her eldest daughter Lee was the driving force behind taking the case to the Supreme Court, which issued a unanimous decision in early 2015 that struck down sections of the Criminal Code that made it illegal to help someone end their life. In 2016, the federal government passed legislation that created the country's regime for medical assistance in dying and made it legal for people whose deaths were "reasonably foreseeable" to apply for an assessment. After a 2019 ruling in the Quebec Superior Court found it was unconstitutional to restrict assisted dying to people whose deaths were reasonably foreseeable, the Liberal government updated the law in 2021. That update included a controversial clause that would allow people suffering solely from a mental disorder to be considered eligible for an assisted death. The proposed change caused widespread worry among provinces and some mental health professionals, and has now been delayed until March 2027. In the meantime, Health Canada has been studying what Canadians think of allowing people to ask for medical assistance in dying through an advance request. Advance requests would allow people with Alzheimer's, dementia, or other degenerative conditions to make the application and decide when they'd like to end their lives. Price said that change "is such a simple thing to do." "We're excluding a huge number of Canadians from a MAID option because they may have dementia and they won't be able to make that decision in three or four or two years. How frightening, how anxiety-inducing that would be," he said. He admitted to feeling frustrated at the pace of change, though he said he knows his "laissez-faire" attitude toward death is uncommon. WATCH | Advance requests for MAiD now allowed in Quebec: Quebec now allows advance requests for medical assistance in dying 7 months ago Duration 2:02 The federal government says it will not interfere with Quebec's new law allowing people to make advance requests for medical assistance in dying (MAID), though some doctors in the province are opposed. Helen Long, the president of Dying With Dignity Canada, said numerous federal consultations have shown there's broad support, dating back to 2016, for advance requests. "We're continuing to advocate and ask our new government … to make advance requests legal for Canadians," she said. Quebec has passed legislation to allow people with serious and incurable illnesses to apply for a medically assisted death in the event that they become incapacitated through an advance request. Marjorie Michel, who was recently named health minister in Prime Minister Mark Carney's new government, said in an interview that it's a question of balance. "It's so personal for people, and I think in some provinces, they are not there yet," she said. But when asked if the government plans to allow advance requests, she deferred to her colleague in the Justice Department. A spokesperson for Justice Minister Sean Fraser said Michel would be best positioned to respond. Health Canada is set to release a report with the key findings from its consultations on the matter this spring. Medical assistance in dying is becoming more common in Canada. In 2023, the latest year for which national statistics are available, 19,660 people applied for the procedure and just over 15,300 people were approved. Price Carter said he wants to talk about his condition because he wants Canadians to talk about death, as uncomfortable as it is. "The more conversations we can spawn around kitchen tables, the better," he said.
