End of Life Care - Health Contents

2  Palliative and End of Life Care

Access to Palliative and End of Life Care

37. The complexity of individual patients' palliative care needs should determine who receives specialist palliative care. Witnesses to this inquiry however have proposed that older people and those with non­cancer conditions are much less likely to have access to specialist palliative care services.[35],[36] One factor that has contributed to the current situation is that palliative care in the UK developed from the hospice movement, which traditionally focused on caring for people with cancer, where a terminal phase is more easily defined.[37] The British Medical Journal has described three distinct illness trajectories for people with progressive chronic illnesses:

·  a trajectory with steady progression and usually a clear terminal phase; mostly cancer

·  a trajectory with gradual decline, punctuated by episodes of acute deterioration and some recovery, with more sudden, seemingly unexpected death; for example, respiratory and heart failure

·  and a trajectory with prolonged gradual decline; typical of frail elderly people or people with dementia.[38]

38. The National Council for Palliative Care's written evidence suggests that people with cancer access over 75% of specialist palliative care services, although cancer causes around 30% of all deaths.[39]

39. The NCPC also comment:

    Dying does not make equals of us. There are still many inequalities and inconsistencies in people's experience and access to care. Reasons include age, gender, diagnosis, geography and deprivation. For example we know that you are more likely to die at home if you are a man; that you are much more likely to access specialist palliative care if you have cancer, and that you are more likely to die in a care home if you have dementia. The trajectories of some conditions, such as cancer, can be relatively predictable. However as more of us are living longer, and dying with a number of long term conditions, we need to ensure that everybody receives good care regardless of the complexity of their circumstances ... Dementia must be given equal parity of access to end of life care as is given to people dying of physical health issues.[40]

40. In a recent debate, members of the House of Lords heard Baroness Bakewell quote from the report Living and Dying with Dementia in England: "people with dementia are not being appropriately identified for end of life care, and that they have less access to, and receive poorer quality care than people with other terminal illnesses."[41], [42]

41. Written evidence from the Alzheimer's Society explains that it is particularly important that people with dementia have the opportunity to engage in end of life care discussions early in the course of their illness, while they still have the mental capacity and ability to communicate to express their wishes and preferences and agree in advance plans for their future care. By the time they reach the end of life phase of their illness they will lack the capacity to be involved. Most people with dementia reach the end of their lives in a care home. The Alzheimer's Society have called for more palliative care services to be available to care homes with residents who have dementia, to avoid unnecessary admissions to hospital and to ensure that dementia patients at the end of their lives are treated with dignity and are free from pain.[43]

42. The reasons for the variation in people's ability to access specialist palliative care and end of life care are varied. Age UK's written evidence draws attention to the fact that one third of all deaths are of people aged 85 and over but only around 15% of those who gain access to specialist palliative care are in this age group.[44] Despite the large number of older people who die each year,

    The NHS continues to struggle to properly identify people who are in the last stages of life, unless they have a terminal or otherwise life-threatening condition … This in turn means people are not able to plan properly or encouraged to discuss decisions about their future care … A failure to understand multi-morbidity and frailty and the trajectory of people's health living with either (or often both) means the NHS is not agile, failing to allow care and support to switch tracks quickly when someone is approaching the end of life."[45]

43. The Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care has also found that staff caring for frail and seriously ill older people have difficulty recognising the point at which a transition to a palliative care approach may be appropriate.[46]

44. The British Heart Foundation in their written evidence highlight that even though heart failure survival rates are worse than for some cancers, unlike cancer patients, very few people with heart failure receive specialist end of life care. They note that GPs admit that introducing palliative care is fairly straightforward for people with cancer, who typically have a clear terminal decline, but much more difficult for patients with other life-threatening illnesses. [47]

45. Whereas the majority of adults only need palliative care towards the end of their lives, the palliative care needs of children and young people are often protracted, frequently occurring prior to their last year and sometimes extending over several years.[48] It is common for children and young people's conditions to fluctuate and, as such, it is often much more difficult to identify when they are moving into their end of life phase. [49]

46. Together for Short Lives explain that geography has a significant impact on the extent to which children and families are able to access 24/7 palliative care. Some families living in remote rural areas do not have access to the community children's nursing teams or paediatric services they need.[50] Their written evidence describes the situation:

    Whether or not children are able to die at home or in their place of usual residence largely depends on whether they can access a sustainable local community children's nursing (CCN) service. A current shortfall in CCNs is affecting the choice which children and families currently have.[51] The lack of availability of Community Children's Nursing teams has a detrimental impact on 24/7 children's palliative care support. The Royal College of Nursing (RCN) recommends that for an average-sized district with a child population of 50,000, a minimum of 20 whole time equivalent (WTE) community children's nurses are required to provide a holistic CCN service. This is in addition to any individual child-specific continuing care investment. However, only 17 community children's nurses are due to qualify in 2014/15 in the UK.[52]

47. The National Survey of Bereaved People (VOICES) has found that care varies by level of deprivation. People living in the most deprived areas are less likely to experience outstanding or excellent care at the end of life than those in the wealthiest areas.[53]

48. We have heard from a number of witnesses that less than a quarter of hospitals have round­the­clock access to specialist palliative care teams throughout the week.[54] The Royal College of Physicians in their evidence state:

    Patients' access to medical staff is a major issue in the palliative and end of life care pathway. In a recent audit conducted into palliative care the RCP found that only 21% of hospital sites provide face to face palliative care weekend services. 73% provide face to face palliative services on weekdays only … The inconsistent availability of specialist palliative care seven days a week and poor uptake of training can dramatically impact on the quality of care available to patients.[55]

49. The CQC told us that, having inspected over half of all the acute hospitals in England, they have seen a wide variation in the integration of the specialist palliative care teams with the acute medical wards.[56] Where the SPC team is well integrated with other hospital teams they are on hand to advise on the possibility that someone is approaching the end of life, particularly when a patient is admitted through A&E. [57]

50. A member of the Royal College of Physician's patient and carer network has stated:

    'From a patient and carer perspective the availability of and access to services by any provider will be highly variable in any given locality. It can be a matter of chance often linked to the recognition by clinician/professional/patient/family/carer of diagnosis which will enable access to whatever services exist or may be available subject to criteria.'[58]

51. Generalist staff in acute settings must be competent in identifying people who are likely to be at the end of life, irrespective of their medical condition, so that they can offer specialist care where it will be beneficial. We recommend that NHS Trusts ensure that generalist staff are provided with opportunities to learn from specialist palliative care teams.

52. Round­the­clock access to specialist palliative care will greatly improve the way that people with life-limiting conditions and their families and carers are treated. This would also help to address the variation in the quality of end of life care within hospital and community settings. We also recognise the value of specialist outreach services. We recommend that the Government and NHS England set out how universal, seven-day access to palliative care could become available to all patients, including those with non-cancer diagnoses.

53. People with dementia should have equal access to end of life care as those dying as a result of other conditions. Particular attention should be paid to discussing and documenting their wishes as early as possible following diagnosis.

54. Commissioners should explicitly set out how they will provide specialist palliative care services for people from all backgrounds in their locality, including children and adolescents, people from ethnic minority backgrounds and those living in isolated or deprived communities and how they will ensure that those with a non-cancer diagnosis can also access specialist palliative care.

Quality of care in different settings

55. Staff attitudes towards, and communication with, dying people impact on the delivery of care. The National Survey of Bereaved People has found that staff in hospices are rated highest for treating patients with dignity and respect in the last three months of life; hospital staff received the lowest ratings, and nurses were rated lower than doctors.[59] The Committee notes that this may be affected by staffing ratios in different settings.[60]

56. The Parliamentary and Health Service Ombudsman (PHSO) have told us that during the period 2011-2014 they investigated 220 complaints related to the treatment and care provided to individuals towards the end of their life and that the majority of those complaints related to care in hospital settings—182 out of 220 cases. They note that:

    Whilst it is not clear why this might be the case, we believe the location of services and whether someone has support from friends and family for example, plays a significant role. What is perhaps more striking is that our case work contains virtually no complaints made about someone's experience of care within a hospice.[61]

57. PHSO are also quoted as reporting, "the reasonable expectation that an older person or their family may have of dignified, pain-free end of life care, in clean surroundings in hospital, is not being fulfilled," following a detailed investigation of a number of serious complaints.[62]

58. Half of all complaints that the Ombudsman deals with feature poor communication as a theme. PHSO's evidence goes on to say:

    Communication failings appear at all levels; between clinicians and patients; between clinicians and family; within clinical teams; and finally, between the hospital and care in the community. Our case work has highlighted instances where people have only learned of their diagnosis through reading discharge summary information; families not being informed of the severity of a person's illness and therefore a lack of discussion has led to treatment not considered to be in the person's best interests. In other cases, relatives have learned of bad news over the telephone from GP practice managers.

    What is clear … is that healthcare professionals are not always having the open and honest conversations that are necessary in order for carers and family members to understand both the severity of the situation and also the choices that will need to be made.[63]

59. Age UK's written evidence quotes the journal Age and Ageing which in 2011 examined the quality of care experienced by older people in acute hospitals and concluded that:

    Many issues arose because of "attitudinal differences to the care of older people, a focus on curative treatments within hospitals and a lack of resources" as well as "uncertainly over the roles of specialist and generalist palliative care providers in acute hospitals."[64]

Preferred place of death

60. There are many and complex reasons why people may not be able to die in their stated preferred place. Most people, when asked, say they would prefer to die at home. In spite of this, as a study by Gomes and Higginson, cited in the NCPC's written evidence has found, fewer people die at home each year. The findings suggest that should this trend continue, fewer than 1 in 10 people will die at home in 2030.[65] The NCPC's written evidence explains that polls consistently show that hospital is not where most people want to die and that more needs to be done to ensure that more people are cared for and die in their preferred place. They suggest that increased use of Advance Care Planning, better co-ordination and sharing of people's care plans, and round the clock access to specialist advice and pain relief are some of the actions that could facilitate a shift.[66]

61. In both written and oral evidence to the inquiry we have been told that more could also be done to help those caring for people with dementia or frail elderly people in care homes. Care home staff face particular pressures: the rate of turnover in the workforce, the limited time available for staff training, the difficulty of maintaining staff numbers at weekends which leads to a reliance on agency staff, and the reduced level of medical support out of hours. The Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care report that care home nurses express anxieties about their responsibilities, particularly with regard to use of end of life care medications, often because of a lack of available support from NHS colleagues.[67] These pressures can lead to staff reactively sending their residents to hospital where there is a concern about their condition. Both the Royal College of Physicians and the Royal College of Nursing stressed that joint working between the NHS and the community sector can ensure that problems typically arising in the care home setting are anticipated and proper support made available, twenty-four hours a day, seven days a week.[68]

62. The reverse situation was also discussed. Hospitals, on discharging patients who have dementia or are frail elderly, may send them to a care home rather than back to their own home without discussing their end of life care wishes. We were told:

    They are sent to a care home, because they cannot put a package of care together to keep somebody in their own home … It is iniquitous to send somebody to a care home from where their home has been for 60 or 70 years and they never see that home again. That is iniquitous, but it is happening.[69]

63. Place of death is not always determined by the availability of services, however. Changing patient choice also plays a role. The Association for Palliative Medicine of Great Britain and Ireland have noted that as death approaches, people may change their previously stated preferred place of death from their home to an in-patient setting (hospital, palliative care unit or hospice). Some of the issues said to influence the decision include:

·  the patient and family hold unrealistic expectations, despite efforts to communicate a poor prognosis, and therefore want a hospital admission for what they hope to be life-prolonging treatment;

·  the patient is already in an acute care setting and their condition deteriorates more rapidly than a discharge home can be arranged (either through logistics with planning the discharge, transport home, or providing appropriate social care at home in a timely manner);

·  the patient has potentially reversible clinical problems, justifying further hospital treatment;

·  the patient knows their hospital medical team well and feels safer remaining under their care;

·  the patient has insufficient practical support at home to accommodate their needs; some patients wish to refuse equipment such as a hospital bed being imposed on them.[70]

64. On this last point, it is also important to be aware of the needs of family carers who will be required to look after the patient and to take account of their capacity to cope.

65. When someone is dying they may simply be reluctant to see their home increasingly transformed into a 'mini-hospital'.[71]

66. Data on preferred place of death refers largely to the preferences of adults rather than those of children and young people with life threatening illnesses and their families. Giving oral evidence to the Committee, Together for Short Lives commented on this, referring to a 2014 study by Professor Myra Bluebond-Langner which suggested that there is no clear evidence to support the inference that terminally ill children and their families would choose that they die at home. Families were found to change their minds about the place of death as their situations changed.[72] [73]

67. A specific issue that has been raised during the course of the inquiry is that people who do choose to die at home often want to be in their own bed but are told by staff that the recommendation is to have a hospital bed installed. Witnesses to the inquiry noted that while it was important to acknowledge that there are some risks to remaining in a standard bed, dying people and their families should be given the requisite information and allowed to make the decision themselves. The competence and confidence of staff who have these discussions is important in these situations, as the RCN explained:

    As a district nurse you build up the confidence to be able to say, "Hang on a minute, we can take this person home. We don't need a hospital bed. We can adapt their own bed." They know the risks and we know the risks, and we are willing to take them.[74]

Competence of the workforce

68. Many of those who provided written evidence to this inquiry expressed the opinion that health care staff need support to develop their competence in identifying, providing care to and communicating with people at the end of life and their families and carers.

69. The Parliamentary and Health Service Ombudsman's evidence commented that their case work highlights particular difficulties relating to out of hours treatment and care. It was also clear that "healthcare professionals need to be supported to be better at having open discussions about care towards the end of life." It went on to say:

    Our case work has shown that there is a need to communicate in a way that is both sensitive but also makes clear the prognosis and what options there are for care based on the outcomes individuals may want for themselves. For this reason, it is vital that carers and family members and friends know who to speak to about any concerns they may wish to raise and that staff are proactive and provide opportunities for concerns or fears to be raised and discussed. This is essential if the NHS is to plan for the care of people with complex needs in a way that helps achieve the best outcomes for the person and their family and carers. [75]

70. We agree with Compassion in Dying when they say that staff training is needed to give clinicians the confidence to communicate positively with people about palliative and end of life care. Staff may need reassurance that, rather than causing alarm or distress to patients, having honest conversations about dying will in fact empower them to die in the manner of their choosing, in the place of their choosing and with less pain or loss of control both for themselves and their families or carers. "When patients are not informed about their prognosis and are not asked about their care and medical treatment preferences, they are denied the right to participate in decisions and might not have the death they want."[76]

71. The National Council for Palliative Care have commented in written evidence:

    A well-trained and supported workforce is needed for these end of life conversations to take place. The Royal College of Nursing survey findings (2014) in which its members voiced serious concerns about their abilities to deliver high quality end of life care to dying people. The survey found that just 10.5% of nurses felt they were always able to deliver the right level of care to individuals, while almost 70% had experienced people being admitted to hospital at the end of their life due to a lack of resources to treat them in a community setting, despite this being against their wishes.

    A 2012 survey for the Royal College of Physicians found only a third of respondents had attended any learning event on end of life care in the last five years. The survey also found that there is demand from doctors for continued professional development in end of life care. However, doctors reported a lack of support by their trusts to provide this type of training for them and other healthcare staff.

    End of life care should be core business for the NHS, but is not being treated as such.[77]

72. The Association of Ambulance Chief Executives, in their written evidence, highlight the role of ambulance staff in end of life care. They call for more specific education on end of life care that focuses on issues such as identifying the dying stage, the implications of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders and communication skills, and stress that it is not only front line staff who need additional training but also call centre and patient transfer staff. They suggest that higher education institutes should be encouraged to increase the amount of time dedicated to end of life care in programmed leading to paramedic registration.[78]

73. Giving oral evidence to the inquiry, NHS England's Dr McShane said:

    One thing we need, which is evidenced by the work that has been done on care planning, is a situation where professionals are instituting and refreshing care plans with patients, and involving carers and people important to the person much earlier on and engaging in that conversation: "If you are at the end of your life"—not "you are at the end of your life"—"what would matter most to you?" This is why I have taken the approach, certainly as the lead for long term conditions, that we need to get this right for any condition. Our approach should be driven not by a condition but by the needs of the person. That to me is about recognition, care planning, communication and working with people on what matters to them. That then will change the nature of the conversation.[79]

74. It is essential that mandatory training and education is provided for generalist staff, whether qualified or unqualified, who care for patients nearing the end of life to ensure good end of life care in all settings. Appropriate skills and knowledge must be learnt and maintained. Employers must release staff for training, prioritising it in the same way as resuscitation training or infection control training, as suggested by the Association for Palliative Medicine of GB and Ireland.[80]

75. We heard that too often staff lack confidence and training in raising end of life issues with their patients or delivering the right care. Training should be provided for all health and social care staff who are likely to provide care to people at the end of life, including training in communication skills. We recommend that NHS England works with care providers to identify and roll out tailored end of life care training.

Advance Care Planning

76. Most people die in hospital rather than in their stated preferred place of death. The lack of a care plan is a significant reason why people at the end of their lives do not benefit from specialist palliative care and are not able to die in their preferred place. The opportunity to create an individual's advance care plan will be missed if clinical staff are reluctant to raise the issues of dying and death, especially if patients and their families are also reluctant to admit that someone is approaching the end of their life. And yet, as Sir Mike Richards of the Care Quality Commission told us: "There is a lot of evidence that care planning leads to better care."[81]

77. It is helpful if patients and families are fully aware of the difference between the tools that are available to formally set out a person's wishes, including Advance Statements of Wishes and Advance Decisions to Refuse Treatment (ADRT). An ADRT is legally binding when it records in writing the informed decision of the person with capacity to refuse consent to treatment in specific situations, such as cardiopulmonary resuscitation or insertion of tube feeding. If the validity of an ADRT cannot be assured, for example because it is vague, the documents will be regarded as an Advance Statement of Wishes and must be considered when a decision must be made in the best interests of a person who has lost capacity. An Advance Statement of Wishes is not legally binding because a person cannot dictate in advance what interventions must be done to them.

78. Patients should also be made aware of the option to appoint and register one or several people to have Lasting Power of Attorney (LPA) for Financial decisions and separately to have LPA for Health and Welfare decisions. Those registered for Health and Welfare decisions can additionally be registered for enhanced decision-making, to include life-sustaining treatment decisions.

79. Dr McShane, giving evidence for NHS England, commented on the confusion that exists around advance care planning: "I must admit that I have been trying to work out the lexicon around this and I am not sure it is entirely helpful: an advance care plan could lead to an advance statement and an advance decision to refuse treatment, and I think we are confused."[82]

80. The legal framework to support people's choices and preferences for their care is set out in the Mental Capacity Act 2005. Evidence received for this inquiry however suggests that it is not well understood. A recent House of Lords Select Committee report on the implementation of the core principles of the Act commented that "its implementation has not met the expectations that it rightly raised. The Act has suffered from a lack of awareness and a lack of understanding."[83] Norman Lamb also acknowledged, when giving evidence to the inquiry, that there is still some way to go to fully embed an understanding of the Mental Capacity Act and the mechanisms it has made available.[84]

81. Compassion in Dying have found that while over 80% of people they asked said they would want to be able to decide which life-prolonging medical treatments they would have, in advance of losing mental capacity, only 4% have an Advance Decision to Refuse Treatment or have appointed a Lasting Power of Attorney for Health and Welfare to ensure that their medical treatment preferences are respected. Compassion in Dying say, "Work is needed to ensure that people can act on their preferences in order to have the death they want. More widely, we support that patients are involved in all decisions about their care, not just those on the refusal of life-prolonging treatments."[85]

82. In practice, most care plans are an Advance Statement of Wishes which must be taken into consideration if the patient loses mental capacity and a decision has to be made in their best interests. The requirements around taking a best interest decision are laid out in the Mental Capacity Act 2005.

83. Some of the witnesses we heard from suggested that the Government should do more to dispel the confusion:

    There is no leadership being provided, as far as we can see, from the Department of Health in terms of policy directives around advanced care planning, which we would very much like to see, as well as engagement from NHS England in the implementation of advanced care planning. That will have a tremendous bearing."[86]

84. Earlier engagement with the tools available will enable patients with terminal or chronic diagnoses to record their end of life care preferences in advance of losing capacity.[87]

85. The Parliamentary and Health Service Ombudsman's written evidence comments:

    The decisions made by healthcare professionals about a patient's care are often made with the best intentions and to try to ensure the highest care quality. However, in cases where decisions are made without the opportunity for the patient and their family to have their preferences assessed fairly, the patient ends up feeling distressed by their lack of choice, and that they have received a poor service.[88]

Their case work has highlighted a failure of GPs to liaise with hospitals to coordinate care, especially for those with complex multiple conditions.[89]

86. Macmillan told us:

    Advanced Care Planning (ACP) is an important means of understanding people's wishes, needs and preferences at the end of life and then planning to meet them. Fundamentally, if people are not identified as approaching end of life and professionals do not initiate conversations to understand peoples' needs and preferences, it is far less likely that plans can be put in place to meet those needs. There is evidence to suggest that the use of ACP to establish a person's wishes around their care at the end of life can increase the likelihood of those wishes being met and that this impact is over and above the impact of specialist palliative care alone. However, anecdotally we know that uptake of the use of ACP across England is variable.[90]

87. In its response to the House of Lords Select Committee Report on the Mental Capacity Act 2005 the Government committed to working with NHS England on developing guidance for front line clinicians, explaining the role of Lasting Power of Attorney for Health and Welfare and deputyships and how they should work with them.

88. We believe there is a role for the Government and NHS England to provide clarity and leadership with regards to the policy on advance care planning and its implementation. We recommend that the Government considers how it can further raise awareness of the mechanisms available to patients and carers under the Mental Capacity Act 2005 to make their wishes clear about end of life care. This should also include information about Advance Decisions to Refuse Treatment. The Department should provide an update to our successor Committee on the actions it has taken since publication of its response to the House of Lords Select Committee Report.

89. We recommend that all staff who provide palliative and end of life care to people with life limiting conditions should receive training in advance care planning, including the different models and forms that are available and the legal status of different options. Training should be developed in partnership with the National Council for Palliative Care and other non-government bodies with relevant expertise.

90. We have heard that Age UK and Compassion in Dying are jointly running a number of pilot projects with the aim of raising awareness of end of life rights and choices: the pilots focus on helping people to make advance decisions to refuse treatment and advance statements and care plans, and understanding the different options for making a Lasting Power of Attorney for Health and Welfare (LPA). The pilots have not been running long enough to be evaluated yet, but initial feedback has been positive and Age UK report a real demand for them. They hope to roll out the model more widely in the future.[91]

91. We recommend that the Government engage with Age UK to understand the outcome of their awareness raising pilots, learning lessons that can be applied to supporting other groups as well as older people to understand the options, and developing a strategy to promote advance care planning to patients in different settings.

92. Giving oral evidence, Norman Lamb acknowledged that the cost of making a LPA can act as a barrier to some people and he agreed that this was an area that the Government needed to review.[92]

93. We recommend that the Government carry out a review of the cost of making a Lasting Power of Attorney, including the impact on take up by people from different socioeconomic groups, with a view to identifying any financial barriers for those who have been unable to take out LPAs, and what support is available to those who cannot afford to use a legal route.

94. At present, should a person completing the LPA application form make any error, they are obliged to complete a new form and start the application process again, including paying a second time. We recommend that the Government review the LPA application process, with a view to making it simpler and cutting costs for applicants.

95. We have heard that electronic care plans and coordination systems can assist care staff to have conversations about end of life care with patients and make it more straightforward and likely staff in different settings will share information:

    The third thing is around IT and communication. The only way we will get the sort of continuity of information that people are seeking in order to manage the complex needs that people have around end of life care, and complex care needs, is to make sure that the information can be shared between providers, preferably, I would say, between the individual and, with their permission, their carers if they so wish. End of life care is one of the key themes in the National Information Board priorities.[93]

96. The Association of Ambulance Chief Executives (AACE) have stressed that it is vital for ambulance clinicians to be made aware when care plans are in place as they are often called in crisis situations. Without access to patient records and end of life care plans, staff are hindered in making difficult and time critical decisions such as whether to attempt resuscitation, transfer a patient to hospital, or ensure that they remain at home if that is their preferred choice. The AACE comment that enabling ambulance staff to view patients' resuscitation status and advance care plans en route to emergencies is only feasible with an integrated and electronic approach.[94] This point was echoed by the Minister in his oral evidence:

    I do not want to sound like a record stuck in a groove, but where EPaCCS[95] are in place and the ambulance service shares the record and are able, as they travel to the location, to understand what that individual's wishes are, it enables them, for example, to take the person to the hospice rather than to the A and E department. Again, that sharing of information is critical to getting ambulance services understanding what the patient's priorities are.[96]

97. There is no systematic approach to recording patients' end of life care plans and preferences, however, so that they can be easily accessed by all health and social care staff who treat them. We have been told that clinicians are "often carrying information about patients 'in their heads' rather than relying on recorded notes to support the transfer of information between staff across organisational boundaries."[97] The Royal College of Nursing have suggested that concerns about Information Technology and confidential information sharing are a barrier to developing good record-keeping.[98]

98. We recommend that the Government encourage and monitor the take up of electronic care planning and Electronic Palliative Care Coordination Systems (EPaCCS), to facilitate information sharing between providers, and that they review the best mechanisms to facilitate the understanding and take up of these plans. We also recommend that the Government explore options for a universal system for recording and filing advance care plans, with a standard template for use across England and a website dedicated to explaining the issues.

99. The Department of Health has notified the Committee that NHS England is working with Health Education England to develop a single accredited curriculum for paramedic training that will ensure that paramedics have the skills they need to resolve more calls on the phone (hear and treat) and at the scene (see and treat). We expect end of life care to feature in the new curriculum when the details are issued later in 2015.

Do Not Attempt Cardiopulmonary Resuscitation Orders (DNACPR)

100. Guidance issued by the NHS End of Life Care Programme (in 2012)[99] stresses that what can be considered a person's "best interests" are not decided solely by medical opinion; they are what the person would choose if capable. The assessment of best interests will be easier if someone has had an opportunity to discuss their future treatment ahead of time, through advance care planning, and where they or their carers are involved in treatment discussions should circumstances change.

101. People can lose mental or physical capacity when they become acutely ill or are approaching the end of their life. When someone has experienced a cardiac arrest, for instance, they will be unconscious and not in a position to consent to, or refuse, an attempt at cardiopulmonary resuscitation. It is therefore imperative that discussions about an individual's specific wishes for resuscitation should they suffer cardiac arrest should take place as soon as it appears that they may be approaching the end of their life.[100]

102. Joint written evidence from the research teams at the University of Warwick Medical School and Cambridge University Hospitals raises concerns about Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders. DNACPRs are put in place to ensure that no attempt is made to restart a patient's heart in the event of a cardiopulmonary arrest. They are written at a patient's request when a patient is dying from a terminal disease and is receiving palliative care, or when a patient is unlikely to survive an attempted resuscitation attempt due to their overall state of health.[101]

103. DNACPR decisions affect the majority of the population: two thirds of patients die in hospital and, of those, 80%-90% die with DNACPR decisions in place. We have heard evidence that staff are not always clear when 'resuscitation' should or shouldn't be attempted and that, while DNACPR only applies to restarting the heart and lungs in the event of a cardiac arrest, it is often misinterpreted to mean that other care should be withheld. The evidence suggests that people who have DNACPR orders receive poorer care than those with similar conditions and backgrounds who do not have such orders in place.

104. There is also known to be variability in the method of recording all types of resuscitation decisions and inconsistency around which recording methods are accepted in which regions. Some forms are not accepted by ambulance staff, with further documentation being required. Several regions have developed forms which are 'valid' across care boundaries, but examples still exist where patients in the community require multiple forms.[102]

105. This is already being addressed in Wales where a unified DNACPR document and procedure has been developed for use in all settings.

106. The Association of Ambulance Chief Executives in their written evidence state that a unified approach to DNACPR documentation is crucial for paramedics and other ambulance clinicians when a swift and difficult decision needs to be taken to allow a person to have a dignified death. They comment:

    Without a DNACPR form or information that establishes that a person is at the end of life, resuscitation may be the course of action decided upon by the clinician that may be later seen as unethical, inappropriate and most importantly not what the patient would have wished for.

    As ambulance services we would strongly support, recommend and offer to assist with work to develop a universally recognised DNACPR form that can be electronically integrated into record systems across England and Wales.[103]

107. We recognise that there will be emergency situations where no information is available on a patient's wishes or preferences. However, work should be taken forwards to minimise the number of such cases.

108. We recommend that the Government review the use of DNACPR orders in acute care settings, including whether resuscitation decisions should be considered in the context of overall treatment plans. This Committee believes there is a case for standardising the recording mechanisms for the NHS in England.

35   Q3 Back

36   ELC 47, page 8 Back

37   ELC 30, para 3.1 Back

38   Murray, S.A., Kendall, M., Boyd, K., Sheikh, A., BMJ 2005, Illness Trajectories and Palliative Care Back

39   ELC 47, page 14 Back

40   ELC 47, page 3 Back

41   Lords Hansard text for 12 Jan 2015 Back

42   Alzheimer's Society and Marie Curie Cancer Care, Dec 2014, Living and Dying with Dementia in England: Barriers to Care Back

43   ELC 40, paras 3.1, 4.2 Back

44   ELC 77, para 1.1 Back

45   ELC 77, paras 1.2 - 1.3 Back

46   ELC 30, para 4.2 Back

47   ELC 7, paras 11-12 Back

48   ELC 43, para 4 Back

49   ELC 71, para 3 Back

50   ELC 71, para 13 Back

51   Ibid., para 7 Back

52   Ibid., paras 15 Back

53   ELC47, page 9 Back

54   Q15 Back

55   ELC 16, para 7 Back

56   Q13 Back

57   Q14 Back

58   ELC 16, para 4 Back

59   ONS, July 2014, National Survey of Bereaved People (VOICES) 2013 Back

60   ELC 30, para 7.1 Back

61   ELC 90, para 3 Back

62   ELC 77, para 2.2 Back

63   ELC 90, para 3.1 Back

64   ELC 77, para 2.3 Back

65   Gomes, B, and Higginson, IJ, Jan 2008, "Where people die (1974-2030): past trends, future projections and implications for care" cited in ELC 47, page 4 Back

66   ELC 47, page 5 Back

67   ELC 30, para 4.4 Back

68   Q132 Back

69   Q132 Back

70   ELC 36, page 3 Back

71   Q145 Back

72   Q85 Back

73   Bluebond-Langner, M et al, Preferred place of death for children and young people with life limiting and life threatening conditions: A systematic review of the literature and recommendations for future inquiry and policy, Palliative Medicine, 2013. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3808113/ Back

74   Q145 Back

75   ELC 90, para 6 Back

76   ELC 21, para 7 Back

77   ELC 47, pages 6-7 Back

78   ELC 46, para 5 Back

79   Q187 Back

80   ELC 36, page 4 Back

81   Q23 Back

82   Q225 Back

83   House of Lords, Feb 2014, Select Committee on the Mental Capacity Act 2005-Report Back

84   Q225 Back

85   ELC 21, para 3 Back

86   Q85 Back

87   ELC 21, para 7 Back

88   ELC 90, para 3.1 Back

89   ELC 90, para 3.3 Back

90   ELC 42, para 4.2 Back

91   Q102 Back

92   Q228 Back

93   Q186 Back

94   ELC 46, page 2 Back

95   Electronic Palliative Care Coordination Systems Back

96   Q240 Back

97   ELC 21, para 8 Back

98   Q135 Back

99   National End of Life Care Programme, Sept 2012, DNACPR Decisions: Who decides and how? Back

100   Ibid.  Back

101   ELC 49, para 3.1 Back

102   ELC 49, para 4.3 Back

103   ELC 46, page 3 Back

previous page contents next page

© Parliamentary copyright 2015
Prepared 15 March 2015