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Found 51 results
  1. 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.
  2. 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.
  3. 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.
  4. Event
    until
    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
  5. 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
  6. 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
  7. 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.
  8. 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
  9. 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.
  10. 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.
  11. Content Article
    Ambulatory infusion pumps are small, battery powered devices that allow patients to carry out day-to-day activities while receiving medication. They are used for many healthcare needs, including symptom relief during palliative care, and in different settings including hospitals, hospices and patients’ homes. Despite having audio and visual warning alarms to notify when medication is not being delivered as it should be, there is a risk that alarms can go unnoticed, particularly by healthcare staff in inpatient settings. The patient case in the Health Services Safety Investigations Body (HSSIB) investigation report is Stephen, a 45-year-old cancer patient on palliative care in hospital, who did not receive his pain relief medication for six hours. Over the course of six hours, there were eight warnings.
  12. 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.
  13. 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
  14. 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
  15. Content Article
    This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Angela and Caroline spoke to us about how they are helping healthcare organisations consider sustainability a core part of their work. They reflect on the responsibility of both patients and healthcare professionals to ensure patient safety for future generations.
  16. Content Article
    For patients living at home with advanced illness, deterioration in health can happen at any time of the day or night. This research report funded by the charity Marie Curie looks at issues faced by people with advanced illness and their informal carers in accessing out-of-hours care. The report highlights new evidence on out-of-hours care, based on: UK data on out-of-hours emergency department attendance among people who are in the last year of life. interviews with health professionals about out-of-hours services across the UK. a patient and public involvement (PPI) workshop.
  17. Content Article
    Providing high quality care and treatment for patients coming to the end of their lives is likely to involve making difficult and emotionally challenging decisions. This guidance from the General Medical Council provides a framework to support doctors in meeting the needs of each patient as they come towards the end of their life.
  18. Content Article
    Dr Claud Regnard (Honory Consultant in Palliative Care Medicine, St Oswald’s Hospice) explains the Mental Capacity Act (England and Wales) and the legal requirements for making best Interest decisions when someone lacks capacity to make a particular decision. This webinar was produced by the Palliative Care for People with Learning Disabilities (PCPLD) Network.
  19. Content Article
    In this article in the Pharmaceutical Journal, Carolyn Wickware asks if liquid morphine should be reclassified. She cites research that Oramorph or oral morphine sulphate solution was directly linked to the cause of death in 13 reports since 2013.
  20. Content Article
    COVID-19 has meant people have died the ultimate medicalised deaths, often alone in hospitals with little communication with their families. But in other settings, including in some lower income countries, many people remain undertreated, dying of preventable conditions and without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for the Lancet Commission on the Value of Death. Drawing on multidisciplinary perspectives from around the globe, the Commissioners argue that death and life are bound together: without death there would be no life. The Commission proposes a new vision for death and dying, with greater community involvement alongside health and social care services, and increased bereavement support.
  21. 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.
  22. Content Article
    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
  23. Content Article
    This 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
  24. Content Article
    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....
  25. Content Article
    This 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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