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Showing results for tags 'End of life care'.
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EventuntilIn 2014 Seth Goodburn died from pancreatic cancer 33 short and heart-breaking days after his diagnosis. Seth wanted to die at home but sadly he died in an acute hospital because the system, processes and procedures constrained the ability of healthcare staff to deliver person and family centred care. For the last 10 years Lesley Goodburn has worked to share Seth's Story to raise awareness of the signs and symptoms of pancreatic cancer, highlight the need for good psychosocial care and to improve end of life care. In the 10th anniversary year of Seth's death Lesley and colleagues provide an update on each of those areas and to launch a new educational resource which are letters that Lesley wrote to the staff involved in Seth's care six months after Seth died. These letters will give you the opportunity to reflect on your role in a patient and families journey through palliative and end of life care and you will be invited to reflect and write a letter back to Lesley and Seth Learning outcomes for participants: Understanding Pancreatic Cancer: Gain a comprehensive understanding of pancreatic cancer, its signs and symptoms, and the patient’s journey from diagnosis to end of life. This includes learning from Seth’s story and the experiences of other patients like Claire and Bradley. Delivering Person and Family-Centred Care: Understand the importance of delivering person and family-centred care, as highlighted by Seth’s experience. Learn about the healthcare systems, processes, and procedures that can either support or constrain the delivery of such care. Psychosocial Support for Patients and Carers: Learn about the need for good psychosocial care for pancreatic cancer patients and their carers. This includes understanding findings from the carer’s perspective at the end of life and the available support for patients and carers. End-of-Life Care: Gain insights into the best practices for end-of-life care, including effective communication about cancer and care in the last hours of life. Learn from the work on cancer conversations and understand how to support patients in their final days. Grief and Bereavement: Understand the process of grief and bereavement, including the impact of the Covid pandemic on bereavement. Learn about the UK bereavement commission and how to support individuals through their grief. These outcomes provide a holistic view of the patient’s journey, emphasising the importance of person-centred care, psychosocial support, and effective communication at the end of life. A reflective letter-writing exercise will further deepen the understanding and empathy of healthcare professionals towards their patients and their families. Register
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Content ArticleFollowing consultation, the Care Quality Commission have now published final guidance to help providers understand and meet the new fundamental standard on visiting and accompanying in care homes, hospitals, and hospices. The guidance (on Regulation 9A: visiting in care homes, hospitals, and hospices) also sets out what people using health and social care services and their families, friends or advocates can expect.
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News Article
NHS must stop sending eating disorder patients to die, watchdog says
Patient Safety Learning posted a news article in News
NHS teams are giving up on patients with severe eating disorders, sending them for care reserved for the dying rather than trying to treat them, a watchdog has warned the government. In a letter to minister Maria Caulfield, the parliamentary health service ombudsman Rob Behrens has hit out at the government and the NHS for failures in care for adults with eating disorders despite warnings first made by his office in 2017. The letter, seen by The Independent, urged the minister to act after Mr Behrens heard evidence that eating disorder patients deemed “too difficult to treat” are being offered palliative care instead of treatment to help them recover. The ombudsman first warned the government that “avoidable harm” was occurring and patients were being repeatedly failed by NHS systems in 2017, following an investigation into the death of Averil Hart. The 19-year-old died while under the care of adult eating disorder services in Norfolk and Cambridge. In 2021, following an inquest into her death and the deaths of four other women, a senior coroner for Cambridge, Sean Horstead, also sent warnings to the government about adult community eating disorder services. Read full story Source: The Independent, 27 March 2024 -
News Article
Oxford palliative care 'virtual ward' launched
Patient Safety Learning posted a news article in News
A "virtual ward" enabling patients who want to die at home get the palliative care they need has launched. Hospice Outreach provides a "specialised pathway" for patients identified by existing services who would benefit from support. It is part of a project that supports people at the very end of their life. Dr Victoria Bradley, of Oxford University Hospitals NHS Foundation Trust (OUH), said it was about giving people "control and agency". OUH claims Hospice Outreach's virtual ward will mean more people will receive personalised care, including in their own homes if that is their choice. It said specialist palliative care would be "provided virtually or in person, depending on what is best for the patient". Amelia Foster, chief executive at Sobell House, said: "Being able to offer a virtual ward to those in a palliative crisis or at the end of their lives helping them to remain at home means more people can access our care in the way that they wish." Dr Bradley, who is the clinical lead for palliative medicine at OUH, said: "We can support with discharge from hospital to people's homes if that is their wish, and by reducing people's time in hospital and caring for them at home, we can offer the right support in their chosen surroundings." Read full story Source: BBC News, 14 March 2024 -
News Article
Covid patients wrongly issued with ‘do not resuscitate’ orders, watchdog finds
Patient Safety Learning posted a news article in News
Doctors made do-not-resuscitate orders for elderly and disabled patients during the pandemic without the knowledge of their families, breaching their human rights, a parliamentary watchdog has said. In a new report on breaches of the orders during the pandemic, the Parliamentary Health Service Ombudsman (PHSO) found failings from at least 13 patient complaints. The research, carried out with the charity Dignity in Dying, found “unacceptable” failures in how end-of-life care conversations are held, and in particular with elderly and disabled patients. Following a review of complaints in 2019 and 2020 the PHSO found evidence in some cases that doctors did not even inform the patient or their family that a notice had been made and so breached their human rights. The report calls for health services in Britain to improve the approach by medics in talking about death and end-of-life care. In examples of cases reviewed, the PHSO revealed the story of 58-year-old Sonia Deleon who had schizophrenia and learning disabilities and a notice which was wrongly applied during the pandemic. In 2020, she was admitted to Southend University Hospital after contracting Covid-19 at age 58. On three occasions a notice was made but her family were never informed. Following Sonia’s death her family found out the reasons given by doctors for the DNAR which “included frailty, having a learning disability, poor physiological reserve, schizophrenia and being dependent for daily activities.” Sonia’s sister Sally-Rose Cyrille said: “I was devastated, shocked and angry. The fact that multiple notices had been placed in Sone’s file without consultation with us, without our knowledge, it was like being hit with a sledgehammer. Read full story Source: The Independent, 14 March 2024 -
Content ArticleA change in how British people and health professionals talk about death is needed to avoid delays in crucial conversations about end-of-life care, resulting in traumatic consequences for patients and their families, the Parliamentary and Health Service Ombudsman (PHSO) has warned. In a new report, End of life care: improving ‘do not attempt CPR’ conversations for everyone, PHSO has called for urgent improvements to the process and communication surrounding do not attempt cardiopulmonary resuscitation (DNACPR), so doctors, patients, and their loved ones can make informed choices about their care.
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Patient safety in hospices
Patient Safety Learning posted an event in Community Calendar
The day will highlight best practice in improving safety in hospices, highlight new developments such as the implications of the new Patient Safety Incident Response Framework (PSIRF), and the new CQC Inspection Framework, and will focus on key clinical safety areas such as falls prevention, medication safety, reduction and management of pressure ulcers, nutrition and hydration, improving the response and investigation of incidents, preparing for onsite inspections and developing a compassionate culture in hospices. For further information and to book your place visit https://www.healthcareconferencesuk.co.uk/conferences-masterclasses/patient-safety-hospices or email kate@hc-uk.org.uk Follow on Twitter @HCUK_Clare #PSHospices hub members receive a 20% discount. Email info@pslhub.org -
Content Article
Ashleigh Hughes is a Senior Sister at an NHS chemotherapy day unit. In this interview she shares her personal story about the impact of antibiotic underdosing on her Mum’s end of life care. Antibiotic underdosing is a medication safety issue that has profound implications for the health service as well as individual patients, but there is currently a lack of understanding and recognition of the issue.- Posted
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News Article
NHS end-of-life ‘pathway’ practises continue despite being banned
Patient_Safety_Learning posted a news article in News
The Liverpool Care Pathway (LCP) was abolished in every hospital and hospice in the country just under a decade ago. This end-of-life-care protocol was scrapped by the Government as a “national disgrace”, in the words of Norman Lamb, then Care Services Minister, after a review by Baroness Neuberger found widespread failings and abuses. But troubling evidence since the scrapping suggests that the practises established under the LCP are in fact still continuing today in the UK’s National Health Service (NHS). Read full story Source: Catholic Herald, 18 February 2024 -
Content ArticleDecisions to admit older, frail patients to critical care must pay particular attention to quality of life and the potential burden of care on patients. This burden may extend beyond surviving a critical illness. These decisions are not easy and require careful thought, clinical judgment, and communication write Daniele Bryden and colleagues in this BMJ opinion piece.
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Content ArticleThis article in The Lancet looks at the need to prioritise palliative care and medications during armed conflict. The authors argue that the Israel–Hamas conflict amplifies the dire need for access to morphine and other essential palliative care medicines included on WHO's Model Lists of Essential Medicines in order to alleviate serious health-related suffering during humanitarian crises. They outline calls that the global palliative care community has made to the World Health Organization (WHO) and other aid organisations to: add adequate oral and injectable morphine and other pain-relieving medicines in humanitarian aid response packages ensure adequate essential medicine supplies for surgery and anaesthesia provide guidelines on the safe use of essential medicines and their distribution to all aid and health workers collaborate with receiving authorities to prevent removal of controlled medicines from emergency kits include paediatric essential medicine formulations for children. They argue that opioids and other essential palliative care medicines equip health workers with the means to relieve serious health-related suffering across clinical scenarios when curative or life-saving interventions are unavailable.
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Patient safety in hospices
Patient Safety Learning posted an event in Community Calendar
This conference focuses on improving safety for hospice patients. The day will highlight best practice in improving safety in hospices, highlight new developments such as the implications of the new Patient Safety Incident Response Framework (PSIRF), and the new CQC Inspection Framework, and will focus on key clinical safety areas such as falls prevention, medication safety, reduction and management of pressure ulcers, nutrition and hydration, improving the response and investigation of incidents, preparing for onsite inspections and developing a compassionate culture in hospices. Register at https://www.healthcareconferencesuk.co.uk/virtual-online-courses/patient-safety-hospices or email aman@hc-uk.org.uk hub members receive a 20% discount. Email info@pslhub.org for discount code. Follow the conference on Twitter @HCUK_Clare #PSHospices -
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Conversations about palliative care
Patient Safety Learning posted an event in Community Calendar
untilThis online panel discussion brings together researchers, healthcare professionals, people living with mesothelioma and their families for open conversations about palliative care. Palliative care has the potential to increase the wellbeing of both people with incurable conditions and their families, yet some are reluctant to engage with this care. Drawing on expertise and first-hand experiences, the event will explore questions such as: what is palliative care? How can it help both people living with health conditions and their families? What are the common misunderstandings around palliative care, and what is the reality? Whilst this can be a difficult topic we hope, through shared experiences and by uncovering misunderstanding, to explore how palliative care has the potential to help us all. Led by the Mesothelioma UK Research Centre, University of Sheffield. Register -
Content Article
World Hospice and Palliative Care Day takes place on 14 October 2023. Patient safety in hospice and palliative care involves ensuring that every patient is able to access the services, support and pain relief that they need when they reach the end of life. It is also vital that families and carers are given relevant and timely support and information by healthcare services during their loved one’s hospice or palliative care, and following their death. -
Content Article
The Worldwide Hospice and Palliative Care Alliance
Patient-Safety-Learning posted an article in End of life care
The Worldwide Hospice and Palliative Care Alliance (WHPCA) is an international non-governmental organisation focusing exclusively on hospice and palliative care development worldwide. With over 100 members worldwide, it's mission is to bring together the global palliative care community to improve well-being and reduce unnecessary suffering for those in need of palliative care in collaboration with the regional and national hospice and palliative care organisations and other partners. The WHPCA website hosts a wide variety of resources relating to hospice and palliative care including: Advocacy resources Building Integrated Palliative Care Programs and Services Country reports and needs assessments Covid-19 Resources Disease specific plans and guidance Fundraising resources Global Atlas of Palliative Care at the End of Life Laws, regulations and national strategies Media resources National association strategic plans Palliative Care Toolkits and Training Manual Standards, clinical guidelines and protocols UN guidelines, documents and strategies on palliative care Universal Health Coverage Resources WHPCA position statements WHPCA publications and reports -
Content ArticleThis joint manifesto has been produced by the charities Sue Ryder, Marie Curie, Together for Short Lives, National Bereavement Alliance and Hospice UK. Ahead of the next General Election, they are calling upon all political parties and candidates to commit to policies that ensure everyone affected by dying, death and bereavement receives the best possible care and support, both now and in the future. The manifesto calls for the new Government to: Deliver a new funding solution for hospices and palliative and end of life care to end the postcode lottery in access Introduce a national delivery plan for palliative and end of life are in every nation to support delivery of local services Guarantee that palliative and end of life care services meet each individual’s needs, including those of people dying at home Act to ensure that nobody dies in poverty and tackle inequalities in palliative and end of life care Improve support for families and carers of people with a terminal illness
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Content Article
A patient's tales of woe
Clive Flashman posted an article in By patients and public
This blog tells the story of a patient, a relation of Patient Safety Learning's Chief Digital Officer. It explains how the patient was failed by the system, seemingly a system designed to fail when its users need it most. Some of the issues described here are technology-based in nature, but the concepts are easy to grasp. A phrase that another person commented when hearing about this story was "when common sense and compassion are lost, there is no hope left for the NHS". I think we have now entered that territory (sadly). Do feel free to comment or add your own stories below....- Posted
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This constructive commentary reflects on two recent related publications, the Healthcare Safety Investigation Branch (HSIB) report, Variations in the delivery of palliative care services to adults, and an article from Sarcoma UK, Family insights from Dermot’s experience of sarcoma care. Drawing from these publications, Richard, brother-in-law of Dermot, gives a family perspective, calling for a more open discussion around how we can improve palliative care and sarcoma services, and why we must listen and act upon family and patient experience and insight.- Posted
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Content ArticleThis article from Sarcoma UK was written by Dermot’s family to develop their reflections and recommendations on the recent publication of the Healthcare Safety Investigation (HSIB) report, Variations in the delivery of palliative care services to adults.
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Content ArticleHealth and care services in England are not always able to provide individualised, equitable and coordinated palliative and end of life care (PEoLC) to meet the holistic needs of people and their families. To understand the impact of inconsistent palliative care, the Healthcare Safety Investigation Branch (HSIB) looked at the case of Dermot, a 77-year-old cancer patient. Dermot's case shows the gap between what is needed and what is available. HSIB make three safety recommendations to NHS England aimed at improving the delivery of palliative and end of life care.
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Content ArticlePeople dying in UK hospitals without specialist palliative care input frequently have “significant and poorly identified unmet needs,” finds a UK-wide evaluation—the first of its kind—published online in the journal BMJ Supportive & Palliative Care. In response to the perceived unmet needs of people dying in hospitals, the Association of Palliative Medicine coordinated the first ever prospective evaluation of end of life care against set standards in 88 hospitals across the UK: Seeking Excellence in End-of-life Care UK or SEECareUK. Palliative care specialists assessed how well the holistic needs of 284 adult patients nearing death, but not referred to palliative care services, were being met on one single day between 25 April and 01 May 2022. Patients in emergency care departments or intensive care units weren’t included. Nearly all (93%) of those assessed had demonstrable unmet need, with this deficit more apparent in district general hospitals than it was in teaching hospitals or cancer centres. It is estimated that 1 in 10 patients admitted to UK hospitals will die during their inpatient stay. As specialist palliative care teams often function as a consult service, referral from the managing team is required. But complexities around recognising that a patient is dying and the stigma associated with palliative care mean these referrals are frequently not made, say the researchers of this study.
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Content ArticleGuidance needs to be applied in a careful, caring and person-centred way to ensure that patients benefit from, and are not harmed by, healthcare. In this blog, Dr Sam Finnikin, an academic GP in Sutton Coldfield, uses the story of 86 year-old Joan to illustrate the importance of shared decision-making in ensuring patients receive the most appropriate care. Joan was prescribed multiple medications by the hospital cardiology team after being diagnosed with acute coronary syndrome and a severely impaired left ventricle, but the medications made her feel very unwell and inhibited her quality of life. Joan then reached out to her GP surgery as she wanted to stop taking them, and Dr Finnikin realised that she and her family were unaware of the the reason each medication had been prescribed and the potential benefits and side effects of each one. After a long conversation about her priorities, Joan stopped the medications that were not benefitting her symptoms and died in peace and comfort at home a few weeks later. Dr Finnikin argues that shared decision-making is not an optional extra, but must be considered a vital part of healthcare, stating that "omitting shared decision making can be just as harmful to patients as being ignorant of clinical recommendations."
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Content ArticleA group of patients and families with experience of end-of-life care worked with researchers from the Nuffield Trust to review findings from its research investigating the effect of the pandemic on people who were receiving end-of-life care at home. This web page summarises the research findings from the perspective of patients and family.
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News Article
Assisted dying inquiry hears people in UK face ‘unbearable suffering’
Patient Safety Learning posted a news article in News
People dying in the UK face “uncontrollable” pain and “unbearable suffering”, which palliative care alone cannot fix, according to the first evidence to a major new parliamentary inquiry asking if assisted dying should finally be legalised. In a shocking submission in favour of a law change, Molly Meacher told the Commons health and social care committee that the reality of end of life could include vomiting faeces, endless nausea and decaying tumours that smelled so bad they drove people out of hospital wards. People “are existing, they’re not living”, the crossbench peer and chair of the charity Dignity in Dying told the committee inquiry, which comes eight years after the House of Commons last considered changing legislation in 2015. Arguing strongly against any law change, Ilora Finlay, a crossbench peer and palliative care physician warned of the risk of “elder abuse” being worsened by a law change and said wider availability of palliative care, which remains patchy in the UK, must instead be a priority. Charles Falconer, a Labour peer and former Lord Chancellor, described the current situation, where dying people sometimes withdraw their own treatment rather than taking drugs to end their life, as “a mess”. He proposed that assisted dying should be available only to terminally ill people and not those facing “unbearable suffering”, as others have suggested. A diagnosis would be needed from two doctors plus approval from high court judge. “The bills that have been proposed [previously but defeated] say the person who decides to have an assisted death must have the capacity to make that decision,” he said. Read full story Source: The Guardian, 28 March 2023 -
News Article
Inside one hospice as struggling sector faces turning the dying away
Patient Safety Learning posted a news article in News
Hospices will be forced to turn dying patients away because they are struggling with steeply rising costs at a time when the NHS is not increasing funding. Hospices look after 300,000 patients and families every year across the UK. It costs about £1.5 billion a year for them to provide this care, with only a third of that coming from the NHS. The rest relies on charitable donations and fundraising in local communities as well as sales in charity shops. As hospices battle to keep going, the Treasury has rejected pleas for a £30 million rescue package this year. The money, those in the sector say, would prevent some from having to close inpatient units and beds or reduce their hospice-at-home teams, which care for patients in the community. Some are already making staff redundant and getting rid of beds. Toby Porter, chief executive of Hospice UK, said the government was making “a huge avoidable mistake”, adding: “People will have a lesser experience at an incredibly important moment and it will lead to system pressures affecting the whole health system.” Read full story (paywalled) Source: The Times, 26 March 2023
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