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Palliative care: more than one chance to get it right
Editorial
In today’s Lancet are the first two papers in the Every Newborn Series, campaigning to ensure that every baby has a healthy start in life through improved quality of care at birth. Equally important, and an area that often receives much less attention, is improvements in quality of care for people who are dying. This week sees the phasing out in the UK of the Liverpool Care Pathway (LCP), a set of guidelines developed in the 1990s intended to ensure comfort and dignity for patients at the end of their life, but one that has been widely criticised by the UK media and some patients and their relatives for failing to provide appropriate care. The LCP was popular with many health-care professionals, and indeed with many patients’ families. It offered a clear framework for clinical staff who were not experts in caring for patients in the last days of life, providing a structure for physical, psychological, social, and spiritual care, with an emphasis on comfort and symptom control. Last year’s report on the LCP by Baroness Neuberger, More Care, Less Pathway, was broadly supportive, but identified several problems with its implementation. The report found that communication around the LCP was often poor, with patients and families frequently feeling they had not been consulted or informed when the decision to focus on comfort rather than cure had been made by the medical team. In environments where care was generally poor, care of the dying patient on the LCP was no better: the issue was the organisational culture, rather than the pathway. But it could be that the problems were not just with implementation. The LCP was created by the Royal Liverpool University Hospital and the Marie Curie Hospice, Liverpool, on the basis of their experience of caring for patients with cancer. A complex intervention, it was never properly evaluated for effectiveness or potential harms, and its applicability to patients dying of causes other than cancer was never questioned. A study published in The Lancet earlier this year by Massimo Constantini and colleagues comparing the LCP with standard practice in caring for patients dying of cancer found no significant difference in the distribution of quality of care. The response to Baroness Neuberger’s report commissioned by the Department of Health was www.thelancet.com Vol 384 July 12, 2014
One Chance to Get it Right, published last month. This report establishes five priorities for care, on which the individualised plans that will replace the LCP must be based. These priorities put the patient at the heart of palliative care, and emphasise that good communication with the patient where possible and with those important to them is paramount. This principle seems so obvious. How can palliative care have gone so wrong that the answer is a 167-page document telling health-care professionals to put the patient first? Maybe the answer is that the problem is not palliative care, but the culture of health care at large. The UK National Health Service (NHS) was founded in 1948 with the intention, in the words of William Beveridge, whose 1942 report called for universal access to health care, to care for patients “from the cradle to the grave”. Perhaps this idea has been lost in the increasing emphasis placed on finding a cure. Why should supportive care only be offered to patients when they are dying? Most people die after living with chronic illness. These noncommunicable diseases are often not curable, but they are treatable, and medicine seeks to ameliorate the effects of these diseases, and to improve patients’ symptom control. Involving palliative care early in the disease process could help to improve patients’ comfort and quality of life for years, rather than just in their final days. More research into palliative care is greatly needed. In a letter to The Lancet in 2012, Katherine Sleeman and colleagues pointed out that just 0·24% of spending on cancer research at the beginning of this decade had been allocated to palliative and end-of-life care. The danger in removing guidelines such as the LCP is that algorithms provide the opportunity for everyone to follow best practice. For the new priorities for care to work, non-specialist staff will need clear guidelines— and unlike the LCP, these should be underpinned by good quality evidence. More than that, a rethinking of what it means to care for patients is imperative. “To cure sometimes, to relieve often, to comfort always”, attributed to Hippocrates among others, is the mantra of many palliative care physicians. Placing an emphasis on patients’ wellbeing throughout their care might grant the health-care profession more than one chance to get it right. The Lancet
Blend Images/Dave and Les Jacobs
Palliative care: more than one chance to get it right
For More Care, Less Pathway see https://www.gov.uk/ government/publications/ review-of-liverpool-carepathway-for-dying-patients For the study by Massimo Constantini and colleagues see Articles Lancet 2014; 383: 226–37 For One Chance to Get it Right see https://www.gov.uk/ government/publications/ liverpool-care-pathway-reviewresponse-to-recommendations For more on funding for palliative care research see Correspondence Lancet 2012; 379: 519
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In today’s Lancet are the first two papers in the Every Newborn Series, campaigning to ensure that every baby has a healthy start in life through improved quality of care at birth. Equally important, and an area that often receives much less attention, is improvements in quality of care for people who are dying. This week sees the phasing out in the UK of the Liverpool Care Pathway (LCP), a set of guidelines developed in the 1990s intended to ensure comfort and dignity for patients at the end of their life, but one that has been widely criticised by the UK media and some patients and their relatives for failing to provide appropriate care. The LCP was popular with many health-care professionals, and indeed with many patients’ families. It offered a clear framework for clinical staff who were not experts in caring for patients in the last days of life, providing a structure for physical, psychological, social, and spiritual care, with an emphasis on comfort and symptom control. Last year’s report on the LCP by Baroness Neuberger, More Care, Less Pathway, was broadly supportive, but identified several problems with its implementation. The report found that communication around the LCP was often poor, with patients and families frequently feeling they had not been consulted or informed when the decision to focus on comfort rather than cure had been made by the medical team. In environments where care was generally poor, care of the dying patient on the LCP was no better: the issue was the organisational culture, rather than the pathway. But it could be that the problems were not just with implementation. The LCP was created by the Royal Liverpool University Hospital and the Marie Curie Hospice, Liverpool, on the basis of their experience of caring for patients with cancer. A complex intervention, it was never properly evaluated for effectiveness or potential harms, and its applicability to patients dying of causes other than cancer was never questioned. A study published in The Lancet earlier this year by Massimo Constantini and colleagues comparing the LCP with standard practice in caring for patients dying of cancer found no significant difference in the distribution of quality of care. The response to Baroness Neuberger’s report commissioned by the Department of Health was www.thelancet.com Vol 384 July 12, 2014
One Chance to Get it Right, published last month. This report establishes five priorities for care, on which the individualised plans that will replace the LCP must be based. These priorities put the patient at the heart of palliative care, and emphasise that good communication with the patient where possible and with those important to them is paramount. This principle seems so obvious. How can palliative care have gone so wrong that the answer is a 167-page document telling health-care professionals to put the patient first? Maybe the answer is that the problem is not palliative care, but the culture of health care at large. The UK National Health Service (NHS) was founded in 1948 with the intention, in the words of William Beveridge, whose 1942 report called for universal access to health care, to care for patients “from the cradle to the grave”. Perhaps this idea has been lost in the increasing emphasis placed on finding a cure. Why should supportive care only be offered to patients when they are dying? Most people die after living with chronic illness. These noncommunicable diseases are often not curable, but they are treatable, and medicine seeks to ameliorate the effects of these diseases, and to improve patients’ symptom control. Involving palliative care early in the disease process could help to improve patients’ comfort and quality of life for years, rather than just in their final days. More research into palliative care is greatly needed. In a letter to The Lancet in 2012, Katherine Sleeman and colleagues pointed out that just 0·24% of spending on cancer research at the beginning of this decade had been allocated to palliative and end-of-life care. The danger in removing guidelines such as the LCP is that algorithms provide the opportunity for everyone to follow best practice. For the new priorities for care to work, non-specialist staff will need clear guidelines— and unlike the LCP, these should be underpinned by good quality evidence. More than that, a rethinking of what it means to care for patients is imperative. “To cure sometimes, to relieve often, to comfort always”, attributed to Hippocrates among others, is the mantra of many palliative care physicians. Placing an emphasis on patients’ wellbeing throughout their care might grant the health-care profession more than one chance to get it right. The Lancet
Blend Images/Dave and Les Jacobs
Palliative care: more than one chance to get it right
For More Care, Less Pathway see https://www.gov.uk/ government/publications/ review-of-liverpool-carepathway-for-dying-patients For the study by Massimo Constantini and colleagues see Articles Lancet 2014; 383: 226–37 For One Chance to Get it Right see https://www.gov.uk/ government/publications/ liverpool-care-pathway-reviewresponse-to-recommendations For more on funding for palliative care research see Correspondence Lancet 2012; 379: 519
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