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Showing results for tags 'End of life care'.
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EventThis Westminster Health Forum conference will examine the next steps for palliative and end of life care in England. It will be a timely opportunity to assess the updated Ambitions for Palliative and End of Life Care: A national framework for local action and how its aims can be achieved. The agenda will bring out latest thinking on key priorities in the framework and wider issues, looking at: patient-centred care service delivery, local leadership, integrated care systems, and community networks tackling variation, sharing best practice and addressing inequalities regulation and quality care delivery workforce development, specialist nurse shortages, and staff retention and wellbeing the pandemic, the NHS backlog, and increased demand the evidence base, and innovative practices and technologies Register
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News Article
End-of-life care will become a legal right
Patient Safety Learning posted a news article in News
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 -
Content ArticleCOVID-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.
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News ArticleDeath has become “over medicalised” and the public should be encouraged to discuss dying and grief, experts have said. There's a call for shift in attitude towards palliative care, with more emphasis on compassion and less on giving medication that may prolong pain. According to a new Lancet commission, an overemphasis on aggressive treatments to prolong life, global inequities in palliative care access, and high end-of-life medical costs have led to millions of people suffering unnecessarily at the end of their life. The authors also note that the pandemic has made death and dying more prominent in daily life, while health systems have been “overwhelmed” when trying to care for those dying. People often died alone, with families unable to say goodbye to loved ones or grieve together, the commission said – the effects of which will “resonate for years to come”. The researchers argue that many people, mainly in low- and middle-income countries, have no access to end-of-life care, and particularly to opioids, while those in high-income countries may be overtreated. Attitudes towards death and dying should be “rebalanced”, the authors conclude, away from a medicalised approach towards a “compassionate community model”, where families work with health and social care services to care for those dying. Read full story (paywalled) Source: The Telegraph, 31 January 2022
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Content Article
A series of failures: a relative's story
Patient Safety Learning posted an article in Keeping patients safe
At the first Patient Safety Management Network (PSMN)* meeting of 2022, we were privileged to hear from a bereaved relative about her shocking experience, which reminded us all of why we do what we do. Claire Cox, one of the PSMN founders, invited Susan (not her real name to protect her confidentiality) to share with us the causes of her relative’s untimely death and the poor and shameful experience when she and her GP started to ask questions. This kicked off a valuable and insightful discussion about how patients are responded to when things go wrong and about honesty and blame, patient and family engagement in decision making when patients are terminally ill, and how we need to ensure that the new Patient Safety Incident Response Framework (PSIRF) guidance embeds good practice informed by the real-life experience of patients and staff.- Posted
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News Article
Paramedics jailed for stealing medication from dying patients
Patient Safety Learning posted a news article in News
Two paramedics have been sentenced to five years in prison for stealing medication from terminally ill patients. Ruth Lambert, 33, and Jessica Silvester, 29, of the South East Coast Ambulance Service (Secamb), preyed specifically on people receiving end-of-life care packages, Kent Police said in a statement. The pair, who live together at Gap Road in Margate, accessed addresses of patients in the east Kent area through their work and posed as nurses to gain access to patients’ homes to steal morphine and other painkillers. They worked in tandem, one researching the addresses and sending details to the other who would visit and steal the medication, police said, with victims being targeted in Thanet, Canterbury, Whitstable, Faversham and Herne Bay. Evidence gathered from the pair’s mobile phones showed they had also conspired to steal from Secamb by taking medication from ambulances when on duty. Detective sergeant Jay Robinson, from Kent Police, described the offences as “an astonishing abuse of position”. “Many of their victims have since passed away and will never know that justice has been done,” he said. “Our investigation was carried out, knowing we had to represent those victims and do the very best for them.” Dr Fionna Moore, medical director for Secamb, added that Lambert and Silvester’s behaviour was a “clear and targeted abuse of their position and does not reflect the commitment and integrity of our staff”. Read full story Source: The Independent, 12 January 2022 -
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.- Posted
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News ArticleDying patients are going without care in their own homes because of a collapse in community nursing services, new data shared with The Independent reveals. Across England a third of district nurses say they are now being forced to delay visits to end of life care patients because of surging demand and a lack of staff. This is up from just 2% in 2015. The situation means some patients may have to wait for essential care and pain medication to keep them comfortable. Other care being delayed includes patients with pressure ulcers, wounds which need treating and patients needing blocked catheters replaced. More than half of district nurses said they no longer have the capacity to do patient assessments and psychological care, in an investigation into the service. Professor Alison Leary, director of the International Community Nursing Observatory, said her study showed the country was “sleepwalking into a disaster,” with patients at real risk of harm. She said the situation was now so bad that nurses were being driven out of their jobs by what she called the “moral distress” they were suffering at not being able to provide the care they knew they should. “People are at the end of their tether. District nurses are reporting having to defer work much more often than they did two years ago. What they are telling us is that the workload is too high. This is care that people don’t have time to do.” Read full story Source: The Independent, 29 November 2021
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News Article
'Some progress' made at failing Shropshire hospital trust
Patient Safety Learning posted a news article in News
An inspection at a failing hospital trust has identified "some progress" but its services are still inadequate. The Care Quality Commission (CQC) inspected the Shrewsbury and Telford Hospital NHS Trust (SaTH) in August. The Trust has been in special measures since 2018 and its maternity services are subject of a review following a high rate of baby and maternal deaths. The CQC said SaTH still had "significant work to do" to improve its patient care and safety standards. Inspectors highlighted particular concerns around risk management at the Trust which it said was "inconsistent" and and urgent and emergency care where patients "did not always receive timely assessment". The CQC also reported a shortage of staff working in end-of-life care and midwifery, however maternity staff were said to have "an exceptionally dedicated and caring approach". "I recognise the enormous pressure NHS services are under across the country and that usual expectations cannot always be maintained, but it is important they do all they can to mitigate risks to patient safety while facing these pressures," chief inspector of hospitals, Ted Baker, said. "While the trust continues to have significant work to do to provide care that meets standards people have a right to expect, it is providing more effective care overall. "However, its risk management remains inconsistent and we are not assured it is doing all it can to ensure people's safety." Read full story Source: BBC News, 18 November 2021 -
Content ArticleIn 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.
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Content ArticleDr 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.
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News Article
Covid: Unpaid carers 'struggled to get pain relief' for terminally ill
Patient Safety Learning posted a news article in News
Unpaid carers looking after terminally ill friends and relatives during the pandemic struggled to access pain relief, with some patients dying in unnecessary pain, a survey has found. The survey of 995 unpaid carers by Marie Curie also found people had difficulties getting personal care and respite nursing for loved ones. Figures show the number of people dying at home rose by 42% in the past year. Nearly two-thirds of carers surveyed by the charity said their loved one did not get all the pain relief they needed when they were dying. Susan Lowe, from Solihull, cared for her mother Sheila before she died with bowel cancer in April last year, aged 74. She said caring for her mum during lockdown was hard as "the system was just under so much pressure that we had to manage largely on our own". The public health worker says she struggled to get the right pain relief medication for her mother in her final weeks and spent hours travelling to different chemists. Susan, 50, told the BBC: "My biggest regret is that my mum died in pain - more pain than she needed to be. She really wanted to be comfortable at the end. She knew she was dying." "What she really wanted - and this is what she was assured would happen - was to be comfortable. She was told she would get the drugs that she needed for it to be as bearable as possible... I remember breaking down in tears a couple of times in the pharmacy when I was told the medication mum needed wasn't in stock." Read full story Source: BBC News, 8 April 2021 -
Content ArticleMany patients prefer to avoid hospital-based care towards the end of life, yet hospitalisation is common and more likely for people with low socioeconomic position. The reasons underlying this socioeconomic inequality are not well understood. This study from Davies et al. investigated health, service access, and social support as potential mediating pathways between socioeconomic position and receipt of hospital-based care towards the end of life.
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Content Article
Patient Safety Movement APSS: Palliative care
Patient Safety Learning posted an article in End of life care
Early palliative care intervention reduces hospitalisations and ensures optimization of patient comfort and trajectory of treatment. However, patient safety and palliative care initiatives are not as integrated as they should be, considering many palliative care patients have a limited prognosis, have complex, multifaceted conditions, and are, therefore, more susceptible to detriment due to error. Furthermore, there is a lack of a clear distinction between end of life care, palliative care, and hospice care, which confounds the subsequent processes. Because these issues overlap significantly, interventions can be optimised for efficiency. This document provides a blueprint that outlines the actionable steps organisations should take to successfully improve palliative care access and coordination and summarises the available evidence-based practice protocols. -
News Article
Major concerns over quality of care for those dying at home
Patient Safety Learning posted a news article in News
A lack of face-to-face appointments during the coronavirus pandemic has significantly worsened the palliative care being provided to people at the end of their life, according to a survey of specialists. The research, which the Association of Palliative Medicine and end of life charity Marie Curie shared exclusively with HSJ, found 95% of respondents said their ability to provide good quality end-of-life care had been affected because patients had not received their “usual contact” such as visits from GPs or social care staff. Three-quarters said this had a “great” or “massive” impact. Significantly higher numbers of people have died at home since the start of the coronavirus pandemic, compared to previous years. Two-thirds of respondents said health professionals had missed opportunities to refer patients into palliative care and, once they had done, four fifths thought they had not done so in a “timely manner.” Dr Iain Lawrie, president of APM, said a lack of face-to-face appointments meant “red flags” about patients’ conditions were missed, as these clues are easier to gather in person. Read full story (paywalled) Source: HSJ, 16 December 2020 -
Content ArticleThe current COVID-19 pandemic has necessitated the redeployment of NHS staff to acute-facing specialties, meaning that care of dying people is being provided by those who may not have much experience in this area. This report, published in Future Healthcare Journal, details how a plan, do, study, act (PDSA) approach was taken to implementing improved, standardised multidisciplinary documentation of individualised care and review for people who are in the last hours or days of life, both before and during the COVID-19 pandemic. The documentation and training produced is subject to ongoing review via the specialist palliative care team's continuously updated hospital deaths dashboard, which evaluates the care of patients who have died in the trust. It is hoped that sharing the experiences and outcomes of this process will help other trusts to develop their own pathways and improve the care of dying people through this difficult time and beyond.
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Content ArticleThe Care Quality Commission (CQC) were commissioned by the Department for Health and Social Care to conduct a special review of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions taken during the COVID-19 pandemic. This interim report sets out the progress of our review so far and our expectations around DNACPR.
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News Article
‘Do not resuscitate’ orders caused potentially avoidable deaths, regulator finds
Patient Safety Learning posted a news article in News
Do-not-resuscitate orders were wrongly allocated to some care home residents during the COVID-19 pandemic, causing potentially avoidable deaths, the first phase of a review by England’s Care Quality Commission (CQC) has found. The regulator warned that some of the “inappropriate” do not attempt cardiopulmonary resuscitation (DNACPR) notices applied in the spring may still be in place and called on all care providers to check with the person concerned that they consent. The review was prompted by concerns about the blanket application of the orders in care homes in the early part of the pandemic, amid then prevalent fears that NHS hospitals would be overwhelmed. The CQC received 40 submissions from the public, mostly about DNACPR orders that had been put in place without consulting with the person or their family. These included reports of all the residents of one care home being given a DNACPR notice, and of the notices routinely being applied to anyone infected with Covid. Some people reported that they did not even know a DNACPR order had been placed on their relative until they were quite unwell. “There is evidence of unacceptable and inappropriate DNACPRs being made at the start of the pandemic,” the interim report found, adding that the practice may have caused “potentially avoidable death”. Read full story Source: The Guardian, 3 December 2020 -
Content ArticleThe Patient Safety Authority has put together information and tips for patients on a range of topics.
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Content ArticleOn the 12 October 2020, the Care Quality Commission (CQC) announced the launch of a review into the imposition of blanket ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) notices for patients in care homes, primary care and hospitals. This follows revelations earlier in the year that potentially thousands of patients were being placed in care homes with blanket ‘do not attempt resuscitation’ (DNAR) notices in place. This has led to widespread public criticism. This article explores whether a DNACPR notice is valid without the consultation of family members or other representatives of a patient receiving care and, if not, what should be done?
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Content ArticleThis report, written in collaboration with the Royal College of Nursing (RCN), sets out proposals to reduce the number of preventable natural deaths in prisons. It identifies how natural deaths occurring in prison might be prevented, where possible, and end-of-life care managed with dignity and compassion.
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News ArticleAn urgent investigation into blanket orders not to resuscitate care home residents has been launched amid fears some elderly people may still be affected by the “unacceptable” practice. After COVID-19 cases rose slightly in care homes in England in the last week, with 116 residences handling at least one infection, the Care Quality Commission (CQC) said it was developing the scope of its investigation “at pace” and it would cover care homes, primary care and hospitals. In March and April, there were reports that some GPs had applied “do not attempt resuscitation” (DNAR) notices to groups of care home residents that meant people would not be taken to hospital for potentially life-saving care. This was being done without their consent or with little information to allow them to make informed decisions, the CQC said. Cases emerged in care homes in Wales and East Sussex. Care homes said the blanket use of the orders did not appear to be as prevalent ahead of a possible second wave of infections and families were reporting fewer concerns, although that could be because visiting restrictions meant they had less access to the homes and were getting less information. There are also concerns that steps may not have been taken to review DNAR forms added to care home residents’ medical files, and so they could remain in place, without proper consent. The CQC review will examine the use of “do not attempt cardiopulmonary resuscitation” (DNACPR) notices, which only restrict chest compressions and shocks to the heart. Dr Rachel Clarke, a palliative care expert in Oxford, has described the CPR process as “muscular, aggressive, traumatic” and said it often resulted in broken ribs and intubation. The review will also investigate the use of broader do not resuscitate and other anticipatory care orders. “We heard from our members about some pretty horrific examples of [blanket notices] early in the pandemic, but it does not appear to be happening now,” said Vic Rayner, the executive director of the National Care Forum, which represents independent care homes. “DNAR notices should not be applied across settings and must be only used as part of individual care plans.” It will also investigate the use of broader do not resuscitate and other anticipatory care orders. Read full story Source: The Guardian, 12 October 2020
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Content ArticleSarah Scobie, Deputy Director of Research at the Nuffield Trust, looks at the continued high numbers of people dying at home, even as hospital deaths return to close-to-average levels, and discusses what reasons might lie behind the continued high numbers of home deaths since the onset of the pandemic. Whatever the reasons for the greater number of deaths at home, a third more people are now dying at home than prior to the pandemic. Although it is widely thought that many people prefer to die at home, this shift presents a significant challenge for community health and care services to deliver high quality care for patients, and to support families at the end of life.
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Content ArticleWhat does good end of life care planning look like? What should you talk about, how and when should you talk about it? Big questions. It’s hard enough for any of us to plan for our time of declining health and dying. Much harder, still, for people with learning disabilities. And much, much harder still at this time of COVID-19. There is a danger that we talk about it at an unhelpful time or in an unhelpful way. This danger is greatest if there is a tick-box approach to “end of life care planning” (or, as it is often called, “advance care planning”), where the focus is on completed paperwork rather than on communication. In this webinar, Professor Irene Tuffrey-Wijne talks about what end of life care planning is (and what it isn’t), and talks through her top tips on how to approach this with people with learning disabilities. She will also discuss some of the particular challenges we face now, during COVID-19, in relation to end of life care planning.
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Content Article
An Introduction to End of Life Care
Claire Cox posted an article in Learning disabilities
It is important to be able to talk about end of life with the people, it is not a topic that should remain taboo. We must break through barriers and remove any stigma associated with talking about end of life care. The people we support are entitled to a ‘good’ death, everyone is. Staff teams must respect their end of life wishes and have those ‘difficult’ conversations so that they know what these wishes are.
