This article's factual accuracy is disputed .(March 2018) |
Developed by | Royal Liverpool University Hospital |
---|---|
Introduced | Late 1990s |
Industry | Palliative care |
Superseded by | Individual approach to end of life care for each patient |
The Liverpool Care Pathway for the Dying Patient (LCP) was a care pathway in the United Kingdom (excluding Wales) covering palliative care options for patients in the final days or hours of life. It was developed to help doctors and nurses provide quality end-of-life care, to transfer quality end-of-life care from the hospice to hospital setting. The LCP is no longer in routine use after public concerns regarding its nature. Alternative methodologies for Advance care planning are now in place to ensure patients are able to have dignity in their final hours of life. [1] Hospitals were also provided cash incentives to achieve targets for the number of patients placed on the LCP. [2]
The Liverpool Care Pathway was developed by Royal Liverpool University Hospital and the Marie Curie Palliative Care Institute in the late 1990s for the care of terminally ill cancer patients. The LCP was then extended to include all patients deemed dying. Its inflexible application by nursing staff of Liverpool Community Health NHS Trust was subject to scrutiny after the poor care delivered to a relative of Rosie Cooper MP.
While the initial reception was positive, it was heavily criticised in the media in 2009 and 2012 following a nationwide roll-out. In July 2013, the Department of Health released a statement which stated the use of the LCP should be "phased out over the next 6-12 months and replaced with an individual approach to end of life care for each patient". [3] However, The Daily Telegraph reported that the programme was just rebranded and that its supposed replacement would "perpetuate many of its worst practices, allowing patients to suffer days of dehydration, or to be sedated, leaving them unable to even ask for food or drink." [4]
The Pathway was developed to aid members of a multi-disciplinary team in matters relating to continuing medical treatment, discontinuation of treatment and comfort measures during the last days and hours of a patient's life. The Liverpool Care Pathway was organised into sections ensuring that evaluation and care is continuous and consistent. It was not intended to replace the skill and expertise of health professionals.
In the first stage of the pathway a multi-professional team caring for the patient was required to agree that all reversible causes for the patient's conditions have been considered and that the patient was, in fact, dying. The assessment then made suggestions for what palliative care options should be considered and whether non-essential treatments and medications should be discontinued. [5]
In practice, the implementation of this guideline was found to be poor. Many decisions were taken in ward settings without the oversight of experienced doctors of medicine. In almost half of the cases neither patient nor family were consulted or informed that it had been decided to place the patient on the LCP. [6]
The programme suggested the provision of treatments to manage pain, agitation, respiratory tract secretions, nausea and vomiting, or shortness of breath (dyspnoea) that the patient may experience. [7] However, a 2016 Cochrane Systematic Review concluded "there is limited available evidence concerning the clinical, physical, psychological or emotional effectiveness of end-of-life care pathways." [8]
The care was not designed to be a one-way street to death. However, in 2012 controversy arose indicating that in most cases it was, and even patients who might have survived longer otherwise died because of the LCP. [9] In a response to negative media reports, Clare Henry and Professor Mike Richards issued a statement on behalf of the NHS End of Life Care Team, stating that the pathway was reversible, and that approximately 3% of patients initially put on the pathway are removed from the pathway when reassessed. [10]
Initial assessments of the effects and value of the pathway were largely positive. A 2003 study published in the International Journal of Palliative Nursing found that nurses saw the pathway as having a generally positive effect on patients and their families. [11] A 2006 study published in the same journal found that, despite some "initial scepticism", the doctors and nurses who were interviewed saw the approach as having a valuable place in hospice care, though its use on "dying" patients on general wards was not addressed. [12] A multi-centre study was published in 2008 in the Journal of Palliative Medicine that found that nurses and relatives thought that the approach improved the management of patients' symptoms, but did not significantly improve communication. [13] The authors concluded that they "consider LCP use beneficial for the care for dying patients and their family." [13]
A 2009 study published in Journal of Pain and Symptom Management studied the impact of the pathway on the end-of-life care of over three hundred patients and found that it produced a large decrease in the use of medication that might shorten life and increased patients' involvement in their medication and care. [14] A 2009 survey of 42 carers providing the pathway was published in the Journal of Palliative Medicine , it found that 84% were "highly satisfied" with the approach and that it enhanced patient dignity, symptom management and communication with families. [15]
Research into its use outside the British healthcare system has not, however, demonstrated the same results: a cluster phase II trial conducted in Italy showed no statistically significant improvement in patients' symptom control. [16] On the other hand, the study did find significant improvements in the other four dimensions it surveyed: respect, kindness and dignity; family emotional support; family self-efficacy; and coordination of care. [16]
Jonathan Potter, the director of the Clinical Effectiveness and Evaluation Unit of the Royal College of Physicians stated in 2009 that their audits showed that "where the Liverpool Care Pathway for the dying patient (LCP) is used, people are receiving high quality clinical care in the last hours and days of life". [17] The 2009 audit looked at end-of-life care in 155 hospitals, and examined the records of about 4,000 patients. A major criticism of this study was that each of the participating hospitals was only asked to submit datasets from 30 patients: arguably, the study was heavily biased by the ability to "cherry-pick" the most favourable datasets, and the lack of availability of all data for independent scrutiny and objective assessment.
Version 12 of the LCP was launched on 8 December 2009, after more than two years of consultation. Among other revisions, it includes new decision-making support on whether or not to start the LCP; highlighted guidance to review the appropriateness of continuing on the pathway at any time if concern is expressed by either the patient, a relative, or a team member; and new prompts to support decisions on artificial nutrition and hydration. [18] [19] An editorial in the BMJ judged the new release did "much to tackle recent criticisms". [20]
In July 2013, the results of an independent review into the LCP led by Baroness Neuberger were published. [21] Accepting the review's recommendations, the government advised that NHS hospitals should phase out the use of the LCP over the next 6–12 months, and that "NHS England should work with CCGs to bring about an immediate end to local financial incentives for hospitals to promote a certain type of care for dying patients, including the LCP. [3]
A 2008 article in the American Journal of Hospice and Palliative Care criticised the Liverpool Pathway for its traditional approach and not taking an explicit position on the artificial hydration for critically ill patients. [22] A 2009 editorial in the Journal of Clinical Nursing welcomed the impetus towards providing improved care at the end of life and the more widespread use of integrated care pathways, but warned that much more research is needed to assess which of the several approaches that are in use is most effective. [23]
In 2009 The Daily Telegraph wrote that the pathway has been blamed by some doctors for hastening the death of some mortally ill patients, and possibly masking signs that the patient is improving. [24] This story was criticised by the Association for Palliative Medicine and the anti-euthanasia charity Care Not Killing as inaccurate. [5] [25] In contrast, The Times welcomed the pathway as an attempt to address patients' wishes and warned about "alarmist" press coverage of the scheme. [26] [27] A German study in 2015 found no indication of hastening death. One in ten patients improves and leaves the pathway. The other nine die. [28]
The LCP has continued to be controversial. Many witnesses have testified that elderly patients were admitted to hospital for emergency treatment and put on the LCP without documented proof that the patient consented to it, or could not recover from their health problem; 48-year-old Norfolk man Andrew Flanagan was revived by his family and went home for a further five weeks after doctors put him on the LCP. The Royal College of Physicians found that up to half of families were not informed of clinicians' decision to put a relative on the pathway. [29]
In a 2012 letter to The Daily Telegraph, six doctors belonging to the Medical Ethics Alliance, a Christian medical organisation, [29] called on LCP to provide evidence that the pathway is "safe and effective, or even required", arguing that, in the elderly, natural death is more often painless, provision of fluids is the main way of easing thirst, and "no one should be deprived of consciousness except for the gravest reason." [9] In response, 1,300 healthcare workers signed a letter to the Telegraph in support of the LCP, saying it would be the way that they themselves would chose to die. [30]
In October 2012 figures released under the Freedom of Information Act showed that some two thirds of NHS trusts had received incentive payments for meeting "targets" for using the LCP, and that such payments totalled £12 million or more. [31]
An advance healthcare directive, also known as living will, personal directive, advance directive, medical directive or advance decision, is a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity. In the U.S. it has a legal status in itself, whereas in some countries it is legally persuasive without being a legal document.
A do-not-resuscitate order (DNR), also known as Do Not Attempt Resuscitation (DNAR), Do Not Attempt Cardiopulmonary Resuscitation (DNACPR), no code or allow natural death, is a medical order, written or oral depending on the jurisdiction, indicating that a person should not receive cardiopulmonary resuscitation (CPR) if that person's heart stops beating. Sometimes these decisions and the relevant documents also encompass decisions around other critical or life-prolonging medical interventions. The legal status and processes surrounding DNR orders vary in different polities. Most commonly, the order is placed by a physician based on a combination of medical judgement and patient involvement.
Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as
"an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual".
In medicine, specifically in end-of-life care, palliative sedation is the palliative practice of relieving distress in a terminally ill person in the last hours or days of a dying person's life, usually by means of a continuous intravenous or subcutaneous infusion of a sedative drug, or by means of a specialized catheter designed to provide comfortable and discreet administration of ongoing medications via the rectal route.
Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer, dementia, advanced heart disease, and for HIV/AIDS, or long COVID in bad cases, rather than for injury. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply as being terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. An illness which is lifelong but not fatal is called a chronic condition.
Dame Cicely Mary Strode Saunders was an English nurse, social worker, physician and writer. She is noted for her work in terminal care research and her role in the birth of the hospice movement, emphasising the importance of palliative care in modern medicine, and opposing the legalisation of voluntary euthanasia.
Marie Curie is a registered charitable organisation in the United Kingdom which provides hospice care and support for anyone with an illness they are likely to die from, and those close to them, and campaigns for better support for dying people. It was established in 1948, the same year as the National Health Service (NHS).
The Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care is an academic faculty within King's College London. The faculty is the world's first nursing school to be continuously connected to a fully serving hospital and medical school. Established on 9 July 1860 by Florence Nightingale, the founder of modern nursing, it was a model for many similar training schools through the UK, Commonwealth and other countries for the latter half of the 19th century. It is primarily concerned with the education of people to become nurses and midwives. It also carries out nursing research, continuing professional development and postgraduate programmes. The Faculty forms part of the Waterloo campus on the South Bank of the River Thames and is now one of the largest faculties in the university.
End-of-life care (EOLC) is health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotional needs, physical comfort, spiritual needs, and practical tasks.
In the United States, hospice care is a type and philosophy of end-of-life care which focuses on the palliation of a terminally ill patient's symptoms. These symptoms can be physical, emotional, spiritual, or social in nature. The concept of hospice as a place to treat the incurably ill has been evolving since the 11th century. Hospice care was introduced to the United States in the 1970s in response to the work of Cicely Saunders in the United Kingdom. This part of health care has expanded as people face a variety of issues with terminal illness. In the United States, it is distinguished by extensive use of volunteers and a greater emphasis on the patient's psychological needs in coming to terms with dying.
Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. Hospice care provides an alternative to therapies focused on life-prolonging measures that may be arduous, likely to cause more symptoms, or are not aligned with a person's goals.
Terminal dehydration is dehydration to the point of death. Some scholars make a distinction between "terminal dehydration" and "termination by dehydration". Courts in the United States generally do not recognize prisoners as having a right to die by voluntary dehydration, since they view it as suicide.
Children’s Hospices Across Scotland (CHAS) is a registered charity that provides the country's only hospice services for children and young people with life-shortening conditions, and services across children’s homes and hospitals. The first hospice was built thanks to the late editor-in chief of the Daily Record and Sunday Mail, Endell Laird, who launched a reader appeal which raised £4million. CHAS offers children’s hospice services, free of charge, to every child, young person and their families who needs and wants them.
POLST is an approach to improving end-of-life care in the United States, encouraging providers to speak with the severely ill and create specific medical orders to be honored by health care workers during a medical crisis. POLST began in Oregon in 1991 and currently exists in 46 states, British Columbia, and South Korea. The POLST document is a standardized, portable, brightly colored single page medical order that documents a conversation between a provider and an individual with a serious illness or frailty towards the end of life. A POLST form allows emergency medical services to provide treatment that the individual prefers before possibly transporting to an emergency facility.
Deathbed phenomena refers to a range of experiences reported by people who are dying. There are many examples of deathbed phenomena in both non-fiction and fictional literature, which suggests that these occurrences have been noted by cultures around the world for centuries, although scientific study of them is relatively recent. In scientific literature such experiences have been referred to as death-related sensory experiences (DRSE). Dying patients have reported to staff working in hospices they have experienced comforting visions.
Pallium India is a national registered charitable trust formed in 2003 aimed at providing quality palliative care and effective pain relief for patients in India. Dr. M. R. Rajagopal is the founder and chairman of Pallium India. The organization works with national and international organisations to improve the accessibility and affordability of pain relief drugs (opioids) and other low-cost medicines, to ensure the availability of palliative care services in India and to improve the quality of palliative care services provided by the healthcare and allied health care professionals. In February 2016, Pallium India was accredited by Social Justice Department of Government of Kerala.
Margaret Ruth McCorkle FAAN, FAPOS was an American nurse, oncology researcher, and educator. She was the Florence Schorske Wald Professor of Nursing at the Yale School of Nursing.
Mhoira E.H. LengFRSE MBChB MRCP(UK) FRCP(Ed and Glas) is one of the first Scottish specialists in palliative care, who has developed the palliative care services internationally, working in Eastern Europe, India and Africa and advises international institutions and agencies on palliative care in the developing world. In 2021, Leng was admitted as one of the new female Fellows of the Royal Society of Edinburgh.
Sonja Jayne McIlfatrick is a nurse and Professor in Nursing and Palliative Care and Dean of Ulster Doctoral College at Ulster University. She was the first non-American President of the International Network of Doctoral Education in Nursing.
Christine Ingleton is a British academic, and is an emeritus professor at the University of Sheffield, specialising in palliative care. She is co-editor of three text books on palliative care and nursing.