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
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