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Found 112 results
  1. Content Article
    A family describe the lengthy efforts they had to take to try to ensure their complaints about their loved one's end of life care would result in improvements at the hospital.
  2. Content Article
    Using open-text responses from the Bereaved Family Survey (BFS), this study in the American Journal of Surgery sought to explore Veteran family experiences on end-of-life care after surgery. Families that left open text comments often expressed a belief in their loved one's unnecessary pain, expressing distrust in the treatment decisions of the care team. The results also showed that limited communication about the severity of disease or risks of surgery caused conflicting and unresolved narratives about the cause or timing of death. Families also described feelings of disempowerment when they were not involved in decision-making and when their wishes were not respected.
  3. News Article
    Jersey politicians have voted to approve plans to allow assisted dying for those with a terminal illness "causing unbearable suffering". The States Assembly has been debating two routes through which people who have lived in Jersey for longer than a year, are 18 or over and have decision-making capacity could apply for assisted dying. A total of 32 members voted in favour while 14 voted against route one. The second route, for those who are not terminally ill but who have an incurable medical condition causing unbearable suffering, was rejected by a majority of 27 to 19. Plans for legalising assisted dying were voted on in principle by the assembly in 2021, but the aim of the vote was to decide how it could work in practice. With a decision now made, the process for drafting a law could take about 18 months, with a debate then taking place by the end of 2025. If a law is approved, it is expected a further 18-month implementation period would then begin, meaning the earliest for it to come into effect would be summer 2027. Speaking after the debate, Chief Minister Lyndon Farnham said "robust safeguards" would be "enshrined in law." He thanked the assembly for a "thoughtful, respectful and considered" debate. Read full story Source: BBC News, 22 May 2024
  4. Content Article
    Home dying is a policy indicator of ‘quality dying’ in many high-income countries, but there is evidence that people living in areas of higher deprivation have a reduced likelihood of dying at home. However, there is limited research which centres the views and experiences of people living with both socioeconomic deprivation and serious advanced illness. This study used visual methods to address this gap in knowledge, focusing on barriers to and experiences of home dying for people experiencing poverty and deprivation in the UK. The authors used photovoice and professional documentary photography between April 2021 and March 2023 with eight participants with serious advanced illness, six of whom had died by the end of the study. They also worked with four bereaved family members to create digital stories.
  5. Event
    In 2014 Seth Goodburn died from pancreatic cancer 33 short and heart breaking days after diagnosis. Seth's wanted to die at home however, the weight of systems and processes meant that he sadly died in an acute hospital. After Seth died his wife Lesley shared their story via a play, a film and an educational resource called Seth's Story Sharing the story has three aims to: improve and of life care. highlight the need for psychosocial support. raise awareness of pancreatic cancer signs and symptoms. Ten years later, join us at this free conference to hear the impact of sharing Seth's Story, the improvements that have been made and future plans to help others share their experiences through creative art forms. This interactive series of talks and discussions will cover: Hearing and seeing the person who has a terminal disease Role of creativity in understanding experience of care at end of life The power of sharing lived experiences through storytelling The role of the people who are important to the person receiving care and their role in care partnerships Understanding who and what is important to the person receiving care Can compassion be taught or is it an innate quality How to have compassionate kind and gentle conversations How can we support people to celebrate their life as life draws to an end How will the new integrated care systems help focus on palliative and end of life care What are the key challenges for the future of end of life care The event is hybrid, virtual and also hosted at Marie Curie London, 1 Embassy Gardens, Nine Elms, Vauxhall, SW11 7BW, with a complimentary sandwich lunch. Register for free if you wish to attend online only via MS Teams Register to attend in person More information is available on the event flyer
  6. Content Article
    In this Guardian article. Palliative Care doctor Rachel Clarke examines the debate around legalising assisted dying, focusing on the need to ensure patients do not want to end their lives due to lack of adequate health and social care. She highlights the risk that if assisted dying were legalised, patients might be coerced into choosing death "not by some rightwing politician or avaricious family member, but by the woeful inadequacy of their care." She goes on to look at wider attitudes to the dying in the NHS, pointing out that hospice care is mostly funded by charities, not the NHS, and that last year in England, almost 14,000 people died in A&E while waiting more than 12 hours for a bed.
  7. Event
    In 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
  8. Content Article
    Following 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.
  9. News Article
    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
  10. News Article
    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
  11. News Article
    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
  12. Content Article
    A 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.
  13. 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.
  14. Event
    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
  15. News Article
    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
  16. Content Article
    Decisions 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. 
  17. Content Article
    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.
  18. Content Article
    This 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.
  19. Event
    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
  20. Content Article
    This blog calls for action on the careful review of established pain medication when a patient is admitted to hospital. Richard describes the experience of two elderly patients who suffered pain due to their long term medication being stopped when they were admitted to hospital. Pain control needs must not be ignored or undermined, there needs to be carer and patient involvement and their consent, and alternative pain control must be considered.
  21. Event
    This 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
  22. News Article
    In an unprecedented murder case in the United States about end-of-life care, a physician accused of killing 14 critically ill patients with opioid overdoses in a Columbus, Ohio hospital ICU over a period of 4 years was found not guilty by a jury Wednesday. The jury, after a 7-week trial featuring more than 50 witnesses in the Franklin County Court of Common Pleas, declared William Huse not guilty on 14 counts of murder and attempted murder. In a news conference after the verdict was announced, lead defense attorney Jose Baez said Husel, whom he called a "great doctor," hopes to practice medicine again in the future. The verdict, he argued, offers an encouraging sign that physicians and other providers won't face prosecution for providing "comfort care" to patients suffering pain. "They don't need to be looking over their shoulders worrying about whether they'll get charged with crimes," he said. The trial raised the specific issue of what constitutes a medically justifiable dose of opioid painkillers during the end-of-life procedure known as palliative extubation, in which critically ill patients are withdrawn from the ventilator when they are expected to die. Under medicine's so-called double-effect principle, physicians must weigh the benefits and risks of ordering potentially lethal doses of painkillers and sedatives to provide comfort care for critically ill patients. To many observers, however, the case really centered on the largely hidden debate over whether it's acceptable to hasten the deaths of dying patients who haven't chosen that path. That's called euthanasia, which is illegal in the United States. In contrast, 10 states plus the District of Columbia allow physicians to prescribe lethal drugs to terminally ill, mentally competent adults who can self-administer them. That's called medical aid in dying, or physician-assisted dying or suicide. Read full story Source: Medscape, 27 April 2022
  23. News Article
    More than 1,300 patients a year are having NHS funding for their palliative care withdrawn after living longer than expected, BBC analysis shows. Terminally ill or rapidly-declining patients are given fast-track support, allowing them to live outside hospital. From 2018 to 2021, a total of 9,037 people had this funding reviewed in England and Wales, with 47% of them losing all support. A further 15% of patients had their continuing healthcare support replaced with the more limited NHS-funded nursing care. Sandra Hanson was referred to the fast-track pathway of the NHS continuing healthcare scheme in mid-2020, after her needs were judged by a clinician to be "end of life". She was diagnosed with end-stage dementia, and had been in hospital eight times in the previous year following multiple falls and bouts of pneumonia. The funding covered the costs of a nursing home, where she suffered fewer falls. But in March 2021, this funding was reviewed by her local Clinical Commissioning Group (CCG). These assessments, usually undertaken by a multi-disciplinary team including health and social care professionals, consider the severity of a person's needs in areas such as mobility, cognition and behaviour. Sandra's daughter, Charlotte Gurney, said the family was represented by a social worker they had not previously met, and describes the meeting as "traumatic" as she tried to explain her mum's needs. "We just felt not listened to... we were treated as if we were trying to swindle the system. Sandra's support was withdrawn, and she had to be moved to a new nursing home, financed by her husband Malcolm. Shortly afterwards, she broke her wrist following a fall and injured her face. The family believe had the review correctly identified Sandra's needs and risks, this could have been avoided. Read full story Source: BBC News, 17 March 2022
  24. News Article
    Dying people will be given an explicit legal right to healthcare for the first time in NHS history, requiring every part of England to provide specialist palliative care. New analysis from the charity Marie Curie shows that about 215,000 people a year miss out on end-of-life care and that without intervention this could rise to 300,000 within 20 years. The government will back an amendment to the Health and Care Bill in the House of Lords. Baroness Finlay of Llandaff, a professor of palliative care medicine and supporter of the amendment, said: “This change is incredibly important. For the first time the NHS will be required to make sure that there are services to meet the palliative care needs of everyone for whom they have responsibility in an area. People need help early, when they need it, seven days a week — disease does not respect the clock or the calendar.” She told the Lords that although “general basic palliative care should be a skill of every clinician”, specialist palliative care was a “relatively new specialty, which is why it was not included in the early NHS legislation”. The government amendment will introduce a specific requirement for “services or facilities for palliative care” to be commissioned by integrated care boards, responsible for local services under the government’s NHS reforms, in every part of England. Matthew Reed, chief executive of Marie Curie, said: “If you need palliative and end-of-life care today, the chances of you getting the pain relief, symptom control and support for your family that you need depend largely on where you live, your ethnicity, gender and on what condition you have. This is wrong. “We welcome the news coming out of the Department of Health and Social Care. The impact of this legal requirement to provide appropriate care to dying people could be transformative — it is one of the biggest developments in end-of-life care since the inception of the NHS. This change has the potential to end the current postcode lottery and make end-of-life care fair for all." Read full story (paywalled) Source: The Times, 25 February 2022
  25. News Article
    Doctors are less likely to resuscitate the most seriously ill patients in the wake of the pandemic, a survey suggests. Covid-19 may have changed doctors’ decision-making regarding end of life, making them more willing not to resuscitate very sick or frail patients and raising the threshold for referral to intensive care, according to the results of the research published in the Journal of Medical Ethics. However, the pandemic has not changed their views on euthanasia and doctor-assisted dying, with about a third of respondents still strongly opposed to these policies, the survey responses reveal. The Covid-19 pandemic transformed many aspects of clinical medicine, including end-of-life care, prompted by millions more patients than usual requiring it around the world, say the researchers. In respect of DNACPR, the decision not to attempt to restart a patient’s heart when it or breathing stops, more than half the respondents were more willing to do this than they had been previously. Asked about the contributory factors, the most frequently cited were: “likely futility of CPR” (88% pre-pandemic, 91% now); coexisting conditions (89% both pre-pandemic and now); and patient wishes (83.5% pre-pandemic, 80.5% now). Advance care plans and “quality of life” after resuscitation were also commonly cited. Read full story Source: The Guardian, 25 July 2022
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