What is your understanding of Palliative Care?
The definition of Palliative care is constantly changing. In the early 1970’s the term palliative care was introduced by Balfour Mount Medicine (AAHPM) defines palliative care as “ to prevent and relieve suffering and to support the best possible quality of life for patients facing life-threatening or debilitating illness and their families regardless of the stage of the disease or the need for other therapies” (AAHPM, 2009). Both definitions complement each other as the number one goal is to relieve one of their suffering and that of their families. Any patients, whatever age they may be should be offered specialised palliative care if they are suffering from a terminal illness or incurable disease. There are many other terms that are used to describe palliative care such as terminal care, hospice and end of life care. At times these are used throughout literature and within work places (Kai Yeung and Kai Chui, 2016; Well et al., 2015). Nevertheless, these terms are not the same as palliative care and are usually mentioned towards the end of palliative care (Baslo, 2015).
Anciently, palliative care was usually linked with cancer care (Shearer et al., 2014). Now, with the population aging around the world (Bailey et al., 2011c) and more treatments being introduced for long term conditions, life expectancies of people are much longer than before (McIlfatrick and Murphy, 2013). Palliative care is now covering all branches of care such as AIDS, dementia and chronic renal function (Basol, 2015). By 2026, the population of those over sixty five and those over eighty years of age is expected to increase by 2026 and double in 2046 (Central Statistics Office, 2013).
The World Health Organisation (WHO) predict that more than twenty million people around the world will require palliative care towards the end of their lives (WHO, 2016). The Health Service Executive (HSE) developed a national framework plan that entilites every patient and their families to some aspect of palliative care despite the care facility they are in or health issues they have (HSE, 2009). This was to encourage services to work together and combine with other programmes like the Emergency Medicine Programme which also incorporates a section on the needs of palliative care patient in the emergency department (HSE, 2012).
While there has been substantial research carried out, together with a Irish survey (McCarthy et al., 2010), it implies that older Irish adults would rather receive palliative care in their own homes but it is shown that many of the deaths in Ireland occur in the acute setting (McKeown, 2010). Five years ago, the Economist Intelligence Unit graded many countries around the world on their quality of palliative care. The United Kingdom ranked number one with Ireland coming forth overall. They looked at areas such as health care conditions, how affordable health care was in the country, the uptake of health care in the country as well as the standard of health care. This brought to our attention how challenging providing palliative care to all of the citizens was and how there will be increasing demand for palliative care in the future as found previous people are living longer with many chronic diseases (Economist Intelligence Unit, 2015, p.22).
The emergency department is a vital department within any acute hospital. They are often seen as ‘fast paced, life-saving, heroic environments’ (Norton et al., 2011, p. 240). Emergency departments create access to many specialities of health care twenty four hours a day. Many palliative patients present to the emergency department seeking relief from a wide range of symptoms such as nausea, constipation, vomiting, diarrhoea or fever (Smith et al., 2009). The emergency department regularly provide care for palliative patients. There has been numerus studies carried out around the world regarding the provision of palliative care in emergency departments. In 2011, in Western Australia, a study was carried out and it was found that intensive and progressively more care was being carried out within their emergency departments on palliative care patients within their last three to four months of their life (Rosenwax et al., 2011). It can be said that there are many barriers to implementing palliative care protocols within the emergency department. These include time restraints, liaising with community teams with aim of discharge, attitudes of care providers and expertise (Ouchi et al., 2019). In 2016, a systematic review was carried out by da Silva Soares et al. They found that having a palliative care screening tool within the emergency department did not have any effect on patients medical outcomes. In a more recent study carried out by Wilson et al., (2020), they found that although palliative care strategies introduced in the emergency don’t prolong patients life or survival time, it does improve their quality of life at that present time. However, they do agree that further research needs to be carried out to clarify the impact palliative care interventions in the emergency department have on palliative patients. As per the World Health Organisation (WHO, 2015), Quality of life is defined as “the individuals perception of his or her position in life in the context of culture and value system”.
The need for suitable education and training of health practioners in the emergency department on palliative care is vital (Russ et al., 2015; Granero-Molina et al., 2016; Batchelor, 2015; Peters et al., 2013). In 2011 in America it was found that there were only twenty emergency practioners that had a qualification in palliative medicine (Quest et al., 2011). This was sub-sequently found in many other countries especially with junior doctors and general practioners (Economist Intelligence Unit, 2015). Here, in the Republic of Ireland and Northern Ireland a report was also carried out to establish the need for palliative care education within the country. It included all acute and community based health centres. It discovered that there is a great need for further education to be carried out and it was a priority for health providers (AIIHPC, 2014). They enable this by encouraging staff to take study leave to be at seminars, carry out post graduates and any funding that may be required to further their education. In 2008, the National Council on Ageing and Older People along with the Irish Hospice Foundation issued a report which zoned in on the educational needs of health care staff as well as ethical and legal matters, available facilities and the perspectives of older people in Ireland on dying in the acute or long term setting. In the responding settings, it highlighted that less than one third of staff nurses had a palliative care qualification and in only one third of settings had any of the healthcare staff have any courses done in palliative care. Less than fifteen percent expressed that their doctors had no medical training in palliative care or end of life care (O’Shea et al., 2008).
In 2009, the Irish Hospice Foundation had a national forum which they released data from, showing the key aspects Irish people were most worried about when it came to end of life care or palliative care (Carroll, 2010). The number one issue the public were most worried about was moving from home or a long stay centre to the Emergency Department. Factors such as understaffing and lack of education and knowledge in residential centres and families feeling guilty, panicked or felt over their heads when acute deterioration began all contributed to this issue. When these events happened, patients end up being transferred to their local emergency departments. When patients need to visit the emergency department their needs are not being met at home such as pain management (Barbera et al., 2010; Basol, 2015). Emergency departments around the world are vital access points for people requiring acute treatment (Weil et al., 2015). In Ireland, the emergency department is deemed the entry point for one to gain access to palliative care and be placed in the appriopriate setting. Although access to this seems to be emergency led rather than electively led (McKeown et al., 2015).
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Although twenty five years old, a study carried out by The Support Principal Investigators (1995), discovered that palliative care patients presenting to the emergency departments failed to receive the care they expected and even more so, many patients had their first experiences of end of life or palliative care within the emergency department. Health practitioners within the emergency department have a special chance to provide person centred palliative care at the earliest point in a patients disease outlook by encouraging a good quality of life, pain management plans and reducing the need for unwarranted treatment (Lamba, 2009). Overcrowding within our emergency departments impede greatly on patients requiring palliative treatment. Many of times they are not given the privacy they may require or the support that they rightfully deserve. Lack of time and seems to be the most identified reason for this (Sorlie et al., 2004). Many patients pass through the emergency department without any mention of a palliative care review (Kistler et al., 2015).
The Emergency department can be described as a chaotic environment with nurses and doctors having large caseloads of patients to care for. Emergency departments are in general not the ideal area in which dying should happen (Bailey et al., 2011a) but it is commonly becoming the location of many deaths and end of life care. There are many barriers with in the emergency department when giving quality end of life care. Examples such as noise levels (monitors, call bells, confused patients and overcrowded departments), high patient case-loads and time constraints (Basol, 2015). There are two deaths that commonly happen within emergency departments. Number one being the ‘spectacular’ – the unexpected traumatic death of a person with courageous effort to save a life. Number two being the ‘subtacular’ being it does not draw attention of many staff, has a lower priority and does not require courageous effort (Bailey et al., 2011b). The number of deaths within the emergency department are non-traumatic. They are usually prioritised lower than the spectacular and especially when both are happening at the same time. When this happens families of the dying patient feel left out and have a feeling of abandonment for both themselves and the family (Bailey et al., 2011b).
A major worry for patients and their families within the emergency department is the long wait times (Wilper et al., 2008). This delays pain management and symptom control for patients which raises families and patients anxiety levels. Glajchen (2004), discovered that many patients were brought to the emergency department by their family members as family members have gotten scared at home as the patients symptoms have become unmanageable (Hjermstad et al., 2013). This discovery proves the high demands patients families or care-givers have at home with their family members health deteriorating.
Worldwide evidence portrays that a high number of patients over the age of sixty five used the emergency department at least once in their last six months before death (Basol, 2015; Barbera et al., 2010). In a study between 1992-2006 in the United States on older people, it was established that over seventy present of now deceased people presented to the emergency department in their last six months of life and many had re-presentations in last four weeks of life (Smith et al., 2012). There were many purposes of these presentations such as pain management, family burden and not feeling safe at home (Hjermstad et al., 2013).
Patients main concerns when palliative care is introduced is, remaining in control, sorting out any financial affairs and tightening family bonds (Robin Cohen et al., 1997). Many of times health practitioners fail to discuss patients goals, in case they are not welcomed, however, it was found that patients welcome these discussions greatly and usually cause minimal distress (Robinson, 1983). Early palliative intervention within the emergency department can improve quality of life, prevent long stays in hospital and it may prolong life (Emanuel, Alpert and Emanuel, 2001). If staff are more aware of patients care goals this may reduce the amount of palliative patients needing admission to the hospital from the emergency department and may encourage hospice care or home care packages to be put in place. In a study carried out by (Grudzen et al., 2016) which trialled emergency initiated palliative care in advanced cancer patients. They found that early referral to the palliative care team greatly enhances quality of life and does not have any negative effect on mortality.
Within the last five years numerous amounts of studies has been carried out to decide whether introducing palliative care interventions within the emergency department or beneficial or not. This confirms that ongoing research should be carried out regularly. The more widespread research that is carried out may encourage a greater importance of palliative care being introduced in the emergency department as people are living longer and documentation is improving as time goes on. It is easy to see that our population is aging and people are living longer (Bailey et al., 2011c). Emergency department attendances are increasing and patients with complex and significant diseases will continue to increase and present to our emergency departments (Xu, Nelson and Berk, 2009). The aim of palliative care is to assess symptoms and advise treatments, help with any decisions that may need to be made and creating patient goals in relation to their care, giving support to families and patients care – givers and introducing community based interventions to ensure their environment is suitable at home (Meier and Beresford, 2006).
As the population ages and emergency department (ED) visits continue to increase, 2,3 the number of older adults with serious and complex illness who present to the ED will also continue to rise.
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