Recently, the concept of patient autonomy has become more prevalent within the healthcare field with the government and the NHS promoting patient choice and providing assurance that individuals will have full control over their care and patient journey. However, a recent publication from Macmillan Cancer Care (MCC) (2013a, pp. 1-27), suggests that there is very little choice available for individuals suffering from terminal cancer with regards to where they spend the end of their lives. Figures provided within the MCC (2013a, p. 8) report suggest that 81% of cancer sufferers would prefer to die at home whilst in reality, 48% of these die in a hospital with only 23% of patients dying within the comfort of their own homes.
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For individuals who are approaching the end of their lives, the option of being cared for and dying within their own home with the familiarity and comfort that this brings, is often very important. The National Bereavement Survey (NBS) (Office for National Statistics, 2012, np) showed that that the loved ones of those who had died in hospital often considered the standard of care as being poor when compared to those who died at home, in a care home or within a hospice. Indeed, the NBS (ONS, 2012, np) showed that 53% of loved ones whose friend or family member had died at home and 58% of those who had died in a hospice, rated the standard of care as outstanding or excellent compared to just 34% for those who had died within a hospital.
This essay will consider the barriers that cancer patients are presented with when making their end of life choices and will make recommendations for improvement of service to ensure that these individuals are allowed to make and receive their final choice. However, the essay will begin with a brief overview of the benefits that end of life patient choice can bring to both the individual and to the wider society.
The Benefits of End of Life Patient Choice
According to the National End of Life Intelligence Network (2012, p.7) 89% of patients who die in hospital are brought in as emergency admissions. However, a large number of these individuals have already expressed their desire to die at home, therefore representing a poor patient outcome and negative experiences. In addition, these unnecessary emergency admissions place a costly strain on accident and emergency departments and the patients take up hospital beds that could be used for other cases. When one considers that the number of people in this country is increasing with the elderly becoming the most prevalent age group, it is not unfeasible to believe that the number of individuals dying from terminal cancer over the next few decades is also going to increase. This increase in numbers is likely to cause the current model of care to become unsustainable. However, promoting choice and delivering end of life care choices can actually save money by reducing the number of emergency admissions. According to MCC (2013a, p.9), there is a net saving of just under Â£1000 for every individual who dies in the community rather than in a hospital bed.
Barriers to End of Life Care Choices
Evidence suggests that there are multiple barriers that prevent individuals from being cared for and ending their lives in their chosen place. The first barrier is the identification of people approaching the end of their lives. According to MCC (2013a, p.10), 38% of cancer patients approaching their end of life were unaware that they were dying, whilst figures from Marie Curie Cancer Care (2013, p.7) show that only 26% of individuals with a palliative care need are placed on the palliative care register. One of the main reasons for this appears to be a lack of confidence in the health professionals over instigating conversations with individuals over their end of life journey. A study carried out by Revill (2010, p.11) found that 60% of GPs were not confident about discussing death or dying with their patients. This lack of identification and lack of professional confidence therefore prevents many people from being able to make their end of life choice in a timely fashion, therefore increasing the number of emergency admissions that have previously been discussed.
However, another issue that has been raised is that of poor planning and coordination between services. When one considers the needs of a terminally ill cancer patient, it is clear that there is a requirement for multiple health and social care providers to work together to provide a joined up service delivery. Unfortunately, the MCC (2013a, p.11) report suggests that this joined up service is not occurring with 45% of respondents thinking that community services worked well together and only 33% stating that GP and other services outside of the hospital worked well together. The reason for this poor service is considered to be a lack of coordination and communication between the different care entities. Indeed, the MCC (2013a, p.11) report suggests that it is often a requirement of the close family and friends of the dying loved one or the actual patient to coordinate care between health and social care departments. The report suggested that information needed to be repeated to the different professionals suggesting that there is a lack of communication between the different departments and that patient information is not being recorded or shared in an appropriate manner.
Nevertheless, there is evidence to suggest that Advance Care Plans (ACP) are a successful way in which a person’s end of life choices can be successfully achieved. Abel et al (2013, pp.168-173) followed 969 terminally ill patients, 550 of whom had made an ACP. 75% of these individuals successfully achieved their dying wishes with regards to the location that they had chosen. In addition, a study published by the NHS (2012, pp.3-4) suggests that the Electronic Palliative Care Coordination Systems (EPaCCS) where patient information, including their end of life choices, can be stored and shared, is an effective way of achieving pro choice for the patient with up to 80% of individuals living in areas where the EPaCCS system is implemented achieving their preferred choice of location to die. In addition, the NHS (2012, p.12) report shows that the implementation of this system has resulted in savings of Â£133,200 where it is implemented. Another positive study has been published by Gao et al (2013, np) who found that the number of individuals being able to die either at home or in a hospice has increased since 2005 when the National End of Life Care Programme was first launched. However, the percentage change was only marginal (0.8%) therefore suggesting that more needs to be done to ensure patient autonomy is at the top of the list for terminally ill patients.
Another barrier that is likely to prevent an individual from dying within their own home is lack of skills and resources within the community workforce. In these cases, the role of the community nurse is vital, however, the number of community nurses is steadily declining (Royal College of Nursing, 2013, np). This reduction of the workforce further dilutes the available skill mix, therefore having a detrimental impact on the quality of care provided to those who choose to die at home. According to the MCC (2013a, p.13) report, only 19% of individuals who chose to die at home received adequate pain relief during their last 3 months of life. Indeed, the lack of 24/7 access to community services forced a large number of these individuals to contact emergency services resulting in admittance to hospital. In 2010, nearly half of the UK’s primary care trusts did not provide 24/7 community nursing services for end of life patients with little progress being made following the subsequent change to Clinical Commissioning Groups (MCC, 2013a, p. 13).
Another report published by MCC (2013b, pp. 1-15) suggests that a lack of access to social care services also restricts the ability of an individual to make end of life care choices. Whilst it is obvious that the right amount of social support is needed in order for a terminally ill individual to be able to remain at home during their last stages of life, this support is often not provided. The MCC (2013b, p. 3) report suggests that this is not always due to the service not being available, but more often being the result of the complex assessment process and the lack of coordination between health and social services. Indeed, 97% of healthcare professionals stated that the complexity of the social care needs assessment is a substantial barrier to gaining the right amount of home care for terminally ill patients. As such, the care for these terminally ill individuals is often left to family members as informal carers. However, only 5% of these individuals actually receive a carers allowance despite them taking on the majority of the personal care responsibilities of these terminally ill patients. Thomas et al (2002, p.531) asserted that the needs of cancer patient carers were greatest as the cancer progressed to end stage; however, a distinct lack of support for these informal carers is prevalent throughout the UK (Soothill et al, 2001, p.468). MCC (2013b, p.6) found that 47% of these informal carers felt that they needed support but were unable to get any. Therefore it is not surprising that this lack of carer support is resulting in many cancer patients being admitted to hospital in the days or hours before death despite it being their wish to die at home.
Recommendations for Improvement
As studies have shown that the local implementation of the EPaCCS has been successful, there should be a renewed commitment by the Department of Health and the NHS to ensure the national implementation of this scheme. Indeed the National End of Life Care Strategy (DOH, 2008, np) made a commitment to pilot and establish end of life care registers that would ensure the coordinated care of terminally ill patients and also ensure that every organisation involved in the care of that individual were aware of their end of life choices. As such, it is asserted that NHS England need to prioritise the roll out of these systems. When this system is implemented on a national basis, EPaCCS will not only coordinate care but will also provide considerable data that can be used to compare outcomes for end of life patients throughout the UK. In addition to this system, it is vital that health care professionals involved with terminally ill cancer patients encourage them to fill out an ACP as a routine part of the care package. A randomised control trial carried out by Detering et al (2010, np) followed 309 terminally ill patients for a period of six month, 154 of whom had completed an advanced care plan. Of the 56 patients who died during the study period, 29 of them had made an ACP with 86% of these achieving their end of life choices compared to just 30% of those who had not made an ACP. This shows that it is vital to document end of life choices to ensure that they are followed by all those involved in the final days of the patient’s care.
Another recommendation is to make end of life care training mandatory for all health professionals who are likely to be involved in palliative care. This includes making a timely identification of individuals who are approaching the end of their lives and providing these professionals, including GPs, with the right training to boost their confidence in instigating end of life discussions with terminally ill patients. This will enable these terminally ill individuals and their families to come to terms with their disease progression and make appropriate plans for their end of life care. It is also recommended that all terminally ill individuals have a named professional who is responsible for the coordination of their care and who will ensure that their end of life choices are met whenever possible. This was a key recommendation of the UK Government’s (2013, pp. 1-62) review of the Liverpool care pathway, which stated that a named consultant or GP should take overall responsibility for a patient’s end of life care, whilst a named registered nurse would have day to day responsibility for the care of that individual and for the communication of information between the patient, family members and other members of the care team.
The UK Government’s (2013, p. 57) review also recommends improving access to community services by increasing funding to ensure that there is a consistent 24/7 access to all social care services throughout the UK. This is considered to be a priority, as without access to 24/7 care, a large number of individuals are not having their pain managed adequately, forcing them to take further action by attending an emergency department. In addition, the government needs to commit to implementing free social care to terminally ill patients and to simplifying the social care assessment to ensure that all those who need social support are able to access this service in a timely fashion. Whilst the UK government has recognised that there is much merit in the proposal of free end of life social care (MCC, 2013a, p. 19), they are yet to offer a firm commitment to this proposal. The continued complexity of the social care assessment and the confusion over who is able to receive social care needs to change if patients’ wishes to die at home are to be honoured. Indeed, Taylor (2012, p.1297) asserts that there is a need to change the way in which all health and social care is provided to elderly patients and suggests a combined health and social care assessment to ensure a proper joined up and coordinated service for these vulnerable patients.
It is also recommended that improved support for carers is instigated to ensure that all those who are caring for a terminally ill patient are recognised as informal carers and are in receipt of a carers allowance. In addition, it is vital that these carers a given the right level of support by health professionals; this support should include having 24/7 access to help and advice, being given regular respite and having adequate information with regards to the progression of their loved ones disease to enable them to encourage the patient to make end of life care plans. Joyce et al (2014, p.1150) found that out of 120 caregivers who were responsible for delivery of medications to their terminally ill relative, only 27 (22.5%) of them received any formal support. This often led to confusion over dose rate and fear that the patient was receiving too much or too little of the medication provided. This issue is compounded by the fact that many of these informal carers are elderly themselves and often have their own health problems (Jack et al, 2015, p.131).
Finally, it is considered that delivering choice for end of life care should be focused on giving that patient a good death, regardless of where they chose to die. As such, it seems logical that there is a need to understand the experiences of terminally ill patients towards the end of their lives in order to deliver adequate care. As such, it is considered vital to explore how the experiences, concerns, fears and feelings of people approaching the end of their lives can be recorded and used to improve future patient outcomes. Whilst it is accepted that the National Bereavement Survey (ONS, 2012, np) provided a large volume of useful information, the current lack of nationally collected information from end of life patients’ needs to be addressed. As such, it is recommended that future study be directed in this way.
In conclusion, it is clear that whilst having a genuine choice over where to spend the last few days and hours of your life is hugely important to terminally ill patients, there are significant barriers to achieving these choices. Current figures suggest that nearly three quarters of cancer patients chose to die at home but less than 29% of them actually do so. The MCC (2013a, p. 3) report estimate that this amounts to 36,000 patients dying in hospital when they had chosen to die at home. A number of barriers exist that are currently preventing the individual from achieving personal choice at the end of their lives; these include poor identification of individuals entering the end of life stage, poor communication from health professionals, poor planning and coordination between health and social services, lack of skills and resources in community nursing and lack of universal access to social care resources. Nevertheless, despite these current barriers, none are insurmountable if current services are simplified and organised in a way that sees the needs of the individuals and their families and carers brought to the forefront. Whilst the government has funded reports and strategies to improve end of life care, it is clear that not enough is being done to change the way in which end of life care is provided. Significant change is required in order to move care and resources out of hospitals and into the community so that people’s preferences can be delivered. However, this can only happen if there is a clear commitment given by all the players involved in end of life care to share the same ambition, that being to deliver a coordinated and integrated care package that meets the needs, wishes and preferences of end of life patients and their carers. A number of recommendations on how this can be achieved have been included in this essay. These recommendations include simplify the social care assessment, providing free social care to end of life patients, improving support for informal carers and ensuring that these carers are recognised, improving the training of health professionals in recognising the transition to end of life stages and encouraging them to instigate discussions over end of life choices, improving access to social services by ensuring a 24/7 service across the UK and implementing the roll out of the EPaCCS across the whole of the UK to ensure that end of life choices are recorded and shared between all the relevant care providers. As it stands at present, whilst end of life patients do have a choice over where they die, these preferences are often not honoured. They do not have full control or autonomy over their end of life care. However, the choice of place to die is not a myth as it is a very achievable option that requires coordination between services and a commitment from the government to improve community health services.
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