The following assignment will discuss the palliative care of a lady who died recently at a local hospice but was originally cared for in the community. Costello (2004) suggests that globally over one million people die each week. In 2006 Northern Ireland had 14,532 deaths (Mortality Statistics within Northern Ireland, NISRA, 2006).
These figures suggest that palliative care is of great significance both locally and globally, irrespective of age, culture and religious beliefs. The meaning and history of palliative care will be discussed and guiding policies and frameworks identified, such as the Department of Health’s (DH, 2008) End of Life Care Strategy and the Gold Standards Framework.
The external factors that affected her care will be explored and the methods employed by her caregivers to promote high quality holistic end of life care will be identified and discussed. The Liverpool Care Pathway for the Dying Patient (LCP, 2009) was used and this tool will be critiqued and its effectiveness assessed. The biological, psychological and social factors, which affected the patient’s experience, will also be addressed.
Spirituality will also be incorporated.
The importance of the multidisciplinary team will be discussed in providing seamless care to the palliative patient. Care of the family including grief counseling will be explored and the usefulness of bereavement interventions highlighted. The assignment will make links throughout to an individual case study on a 56 year old lady with advanced ovarian cancer (Appendix 1). To protect anonymity in accordance with the Nursing and Midwifery Council Code of Conduct (NMC, 2008) a pseudonym will be used and Trust areas will not be identified.
The word ‘palliative’ originates from the Latin word ‘pallium’ and means to ‘cloak’ (Faull et al 2012). An individual coming to the end of their life due to a non curable progressive disease will require palliative care (Baldwin and Woodhouse 2011). Watts (2013) clarifies that a person can live for years with an incurable progressive disease and be classed as ‘palliative’. She adds that ‘end of life’ or ‘terminal’ care better describes the individual’s last days or hours. Death is a normal part of living according to Buckley (2008).
She adds that generally our palliative care services are constantly improving and high quality palliative care is high on the government’s agenda; and a success story of the National Health Service (NHS). Monette (2012) argues that access to quality palliative care remains patchy and inequalities exist, especially for non-cancer patients.
A good death should be the norm and not the exception (Ellershaw and Wilkinson 2011). The National End of Life Strategy (DH, 2008) exists to improve end of life care of adults in the United Kingdom. It provides guidance to health and social sectors on best practice. It sets out key standards that the patient can expect to receive on their palliative care journey including good communication, a care plan, holistic assessment and coordinated care. It also provides recommendations for future research to improve services further.
As a single mother of three with an initial mistrust of the multidisciplinary team Agnes may not have accessed all the services available to her and subsequently her care was disjointed in the early stages. Due to previous bad experiences with social services and the unfortunate death of her son at a young age she understandably had limited trust in the system. She did agree to see the palliative care specialist nurse at regular intervals, however and this helped her to build a relationship with the hospice where she would ultimately spend her last days.
The palliative care service initiated with the hospice movement in London in 1967 with the opening of St Christopher’s hospice, which was the first of its kind in the world (Buckley, 2008). Since then palliative care has developed and should now be accessible to all who need it. Palliative care is provided by a team of professionals who work collaboratively in the best interests of the patient (Bruera and Yennurajalingam 2012). They add that this care should be holistic, taking into account bio psychosocial needs and pharmacological symptom control.
Palliative care can be broadly divided into two categories: generalist and specialist (Faull et al, 2012). They add that generalist palliative care is provided by the GP and district nursing team in the community and health care teams in the hospital setting. This team should be able to fulfill the bio psychosocial needs of the patient and family (Buckley 2008). However, she adds that they should be aware of their own knowledge limitations and be willing to access specialist support where needed; if in the patient’s best interests (Buckley 2008).
DH (2008) adds that training is needed to enhance the skills of generalist practitioners as more people choose to die in the community. The hospice and the palliative care team provide specialist palliative care specifically. Specialist palliative care teams will generally have had more specific training and be dealing daily with patients with life limiting illness. Agnes received care from both specialist and generalist services in common with the majority of the palliative population.
On a day-to-day basis she would receive support from the General Practitioner (GP) and district nursing team (DN). Whilst the palliative care social worker and specialist nurse provided more specific care and were able to address her complex needs. Caring for patients in need of palliative care during the end stages of their lives requires an extraordinary commitment from the nurses and all members of the multi-disciplinary team involved in the care.
Kinghorn and Gaines (2007) state that when the World Health Organisation (WHO) first provided a definition for palliative care in 2002 it was generally aimed at cancer patients. The expertise in palliative care is firmly rooted in cancer care (Kinghorn and Gaines 2007).
More recently however, palliative care has been widened to cover many diseases, including the end stages of chronic illnesses such as renal disease, motor neurone disease and Parkinson’s. In 2003 the National Council for Palliative Care policy document asserted that all people with an advanced incurable disease should be offered palliative care appropriate to their needs. WHO’s latest palliative care definition in 2013 states that palliative care is the improvement of quality of life for all patients with a life threatening illness.
As a patient with ovarian cancer, Agnes did have access to a wide range of support services. She could access Macmillan services, including grants, Marie curie and other charitable organisations and support networks. Agnes remained independent for as long as possible, however, and was reluctant at times to accept the help offered to her.
Palliative guidelines and policies exist to promote good standards of care (Kinghorn and Gaines 2007). Guidance can be sourced from the Department of Health (DH), National Institute of Clinical Excellence (NICE) and NHS frameworks on palliative care. Other local initiatives can also be used to promote best practice with the ultimate goal being high quality palliative care for the patient and family. Inequalities in care remain for patients with non-cancer conditions but the Gold Standards Framework is one of the initiatives aimed at tackling this (Faull et al 2012).
The Gold Standards Framework (GSF) was originally developed by a GP in Huddersfield and in 2006 over 2000 primary care teams in the UK were using it (Buckley 2008). The GSF is an evidence-based approach, which aims to improve care of patients in the last year of life. Each qualifying patient is placed on a register, which is discussed, monthly by the primary care team (Buckley 2008). Using the GSF can promote advanced care planning decisions and reduce inappropriate hospital admissions (Buckley 2008).
Due to her advanced disease and poor prognosis, Agnes was on the GSF palliative care register. This ensured she was flagged up on the GP computer system and she would therefore get priority access to a GP appointment or prescription if she needed it. She was also discussed during the monthly meeting between the GP, community nurses and Macmillan nurse. This afforded an opportunity to ensure her preferred place of care had been documented and that the out of hour’s doctors had been informed of her condition and resuscitation status.
Traditionally end of life discussions have been avoided with patients in the interest of providing hope (Dickey 2012). She argues, however, that establishing the preferred place of death is vital for reducing costs and extending quality time for patients with their families. The NHS (2005) End of life programme recommends that everyone should have a choice about where they would like to die, and the services should be available to facilitate this choice. Given a choice most patients would choose to die at home (Kinghorn and Gaines 2007).
This should not be assumed, however, as patients are individuals and may have valid reasons for preferring to be in a hospice, hospital or nursing home or even with a relative or friend. Dickey (2012) feels that many nurses lack knowledge regarding the appropriate time to seek hospice involvement.
There is no set time to instigate end of life discussion and the patient may even raise the subject themselves (DH, 2008). Advanced care planning can instigate the family and patient to start preparing for death and thus enhance adjustment (Dickey 2012). Agnes had stated that she wished to remain at home for as long as she was physically able, but that she wished to be admitted to the hospice in her last days and die there. As all the team had been made aware of this wish well in advance, the transition was smooth and Agnes was able to have the place of death she planned.
The National Health Service (NHS, 2010) asserts that palliative patients will often have complex needs and require holistic assessment and effective multidisciplinary communication. They add that assessment should be continuous, with priority needs being identified and acted on first (NHS, 2010). Faull et al (2012) suggest that holistic palliative care responds to each stage of the person’s illness.
Nurses need to strike a balance when assessing patients between under assessing: missing vital information and over assessing: with many different practitioners asking the same questions repeatedly (NHS, 2010). Watson et al (2009) added that good communication and trust could allow honest discussion between nurse and patient. Involving family members and carers in the assessment process is vital. Carers cope better with death if they feel supported and listened to by health professionals (Buckley 2008).
Carers and family members can feel isolated and vulnerable when all focus seems to be on their dying loved one (Buckley 2008). NICE (2004) recommend that patients should be offered optimal symptom control and psychological, social and spiritual support. Furthermore their families and carers should also receive support during their illness. Over the period of a year from diagnosis to Agnes’s death, the multidisciplinary teams were able to get closer to Agnes and her family.
The assessment was continuous and at times a slow process as Agnes gained trust in each profession that became involved with her. Through ensuring her children would be provided for and in a stable home following her death, the social worker and housing officer were able to allay many of Agnes’s fears, allowing her to enjoy a better quality of life during her last months.
Holistic assessment can serve to pre-empt problems before they occur and encourages a pro-active approach. Common physiological symptoms in the terminal phase are pain, nausea, agitation and increased respiratory secretions (Ellershaw and Wilkinson, 2011). The availability of opiates is vital to successful palliative care and the United Kingdom’s health service works well in this case (Kinghorn and Gaines 2007). Drug availability in less developed countries is an issue for global palliative care.
Early palliative care interventions can improve symptom control, reduce costs and improve quality of life (Bruera and Yennurajalingam 2012). Agnes suffered from pain and nausea during her palliative phase; this was quickly addressed by the district nursing team through liaison with the GP and prescription of suitable analgesia and anti emetics. Later on, stronger, anticipatory drugs were prescribed. This is good practice in palliative care as it ensures a proactive approach is taken and reduces the time patients may spend in pain waiting for drugs to be prescribed and obtained.
Spirituality is frequently neglected during the assessment process due to ignorance or a lack of understanding. Spirituality is often linked with religion and many nurses find it an uncomfortable topic to broach with patients and family (Kinghorn and Gaines 2007).
They argue that spiritual care is actually more about showing support, concern, respect and genuineness to the patient. Buckley (2008) agrees that a person’s spirituality is not always linked to their religion. Despite this, Buckley (2008) concedes that sometimes individuals will require specialist counsel with a minister of religion or mental health trained nurse to fulfill their spiritual needs. Agnes was not religious but did have a strong character and a supreme mothering instinct.
Her ‘peace’ came with knowing her children would be supported following her death. As Agnes neared the end of her life and all the arrangements had been made she appeared to visibly relax and was able to leave peacefully.
Ellershaw and Wilkinson (2011) assert that healthcare is becoming more patient focused and that a method of achieving this is the use of care pathways. They add that care pathways enable practitioners to standardise and streamline care, whilst being confident it is based on latest clinical research. Use of the pathway can allow the team to share common goals (Ellershaw and Wilkinson, 2011).
Watts (2013) agrees that using a pathway can enhance the nurse’s consistency, communication and confidence. Nurses have stated that pathways are simple and easy to use (Watts 2013). It can be argued, however that the use of a standardised tick box pathway is not the individualised holistic care that we are striving for.
In the late 1990’s the LCP (Liverpool Care Pathway) was developed at the Royal Liverpool University Hospital in conjunction with the Marie Curie Palliative Care Institute. In 2001 it was introduced and recognized as a model of best practice in the NHS Beacon Programme. In 2004 it was then incorporated into the Cancer Services Collaborative project and the National End of Life Care Programme.
The LCP has been recommended by various organizations including NICE guidance and the End of Life Care Strategy (DH 2008). This pathway’s goal is to ensure a death is as dignified and as peaceful as possible, to improve the quality of care of the dying in the last hours or days of their lives and to improve knowledge related to the
process of dying including the physical, psychological, social and spiritual domains.
Ellershaw and Wilkinson (2011) state that the LCP can be translated and used globally to enhance care. Some countries have adapted it to better suit their own needs, and possibly to move away from the controversial media surrounding the pathway. The Welsh assembly government developed their own version of the pathway called the ‘All Wales integrated care priorities for the last days of life (ICP)’ (2012). The main change being the switch in name, and practitioners are encouraged to call the document ICP rather than ‘pathway’.
The original authors of the LCP are also considering a change in name due to bad media coverage (Richards, 2009). The LCP consists of care goals, which are likely to be pertinent to the dying patient, prompting the practitioner to take these needs into account (Ellershaw and Wilkinson 2011). In contrast to the Medias view that the LCP hastens death and promotes strong analgesic and sedative drugs, a study by Van der Heide et al in 2010 found that use of the LCP actually reduced the amount of life shortening drugs used. Richards (2009) defends the use of sedatives in the last days of life within the LCP as audits showed that during the last 24 hours of life the majority of patients are reported to be comfortable.
Ellershaw and Wilkinson (2011) agree that the LCP does not influence the final outcome and therefore provides benefit to the patient with no harm. Use of the LCP has been shown to reduce symptom burden (Van der Heide et al, 2010). Patient comfort is the ultimate aim of palliative care (NHS, 2010). The LCP is only as good as the team who use it and therefore the practitioner needs to believe in the LCP and its efficacy (Ellershaw and Wilkinson 2011). Ellershaw and Wilkinson (2011) concede that the pathway needs to continue to be developed as our knowledge base grows.
Agnes was commenced on the Liverpool Care Pathway two weeks before she died. This was discussed with the family beforehand and its purpose explained fully. The District nursing team had recognised the signs that she was deteriorating and felt she was in her last days of life. Being on the pathway prepared Agnes and her family for her death and the family were able to say their goodbyes.
The pathway received criticism from the media in 2012 and it was suggested that practitioners put patients on the pathway who were not close to death, and also that they did not explain the pathway fully to the families (NHS, 2013). A survey of doctors found that they were nervous about putting patients on the pathway due to a fear of complaints and they felt that more training was needed in order to correctly identify those who were dying (NHS, 2013).
Following Agnes’s death the palliative social worker met with the eldest daughter, Amanda and helped her with the practical issues surrounding her mother’s death. This provided continuity for the family. Bereavement support was provided to all three children. This was provided by the palliative care team but also by the GP and District nurse team who the family can contact at any future point for further support.
Dunne (2004) states that nurses frequently encounter death and should have an understanding of the grieving process to help bereaved relatives. Randall and Downie (2006) argue that grief is a normal process and that special skills are not required to provide support. Stroebe et al (2007) assert that bereavement following the death of a close relative is associated with intense suffering, and then adjustment which can take months or even years to achieve.
Seminal work by Kubler Ross (1969) identified five stages of grief; denial, anger, bargaining, depression and finally acceptance. Complicated grief can occur if a person gets stuck at any stage or becomes overwhelmed or depressed (Hawton, 2007). Agnes’s family had suffered the death of a sibling and then their mother in less than two years; this made them more susceptible to abnormal grief reactions. NICE (2004) state that professional support is not always available for the families and carers who need it. DH (2011) states that bereavement care tends to be reactive rather than proactive and is usually dependant on a local ‘champion’ with a particular interest in bereavement care.
They add that the need for support following the death of a loved one is a fundamental right although each person will require a different level of service. Bereavement visits are currently incongruent between areas and teams. Care should be delivered based on the best available evidence according to the NMC (2008). However, research in this area is lacking, which causes conflict for practitioners. Dent (2005) argues that if professionals are to support the bereaved effectively they need a strong evidence base to work from.
In Agnes’s case the family have been provided with telephone numbers and will be called upon at regular intervals by the community team for as long as it is required.
Agnes’s care experience was affected by a number of external factors, which the team had to deal with as they arose. Her previous poor experience with a social worker caused her to mistrust the social services team initially. The social worker was able to address this by gradually building up a relationship over the phone with Agnes before meeting her. Ironically, the social worker probably had one of the largest roles to play in fulfilling Agnes’s wishes and was paramount to her care.
Agnes was a single mother of three; she had already experienced the sadness of losing her son to cancer. Her eldest daughter was old enough and willing to take responsibility for her younger siblings, this was also crucial as without her the outcome for the younger girls may have been that the family was divided and they may have been taken into care. Agnes’s cancer was diagnosed at a very late stage; this reduced her options and her chance of a cure. Ovarian cancer can be extremely difficult to diagnose, as its symptoms can be indicative of other conditions (NHS, 2012).
Agnes’s care was achieved through a multidisciplinary approach alongside the use of appropriate tools including the GSF and LCP. She died a peaceful death in her preferred place of care and was comfortable with her family around her. Each team member was crucial in creating a seamless care experience for Agnes and her family.
The way we treat our dying population is a good measure of standards of care in general according to Buckley (2008). Agnes and her family were given care appropriate to their needs and a multidisciplinary approach ensured all their needs were addressed; physical, psychological, social and spiritual. Agnes was initially wary around health professionals, she had been recently bereaved herself and time and a gentle approach were needed to gain her trust.
Palliative care services are continually evolving and improving and are high on the government’s agenda. The LCP is a good tool to aid the practitioner but it has received bad media press recently and the public needs to be reassured of its purpose and usefulness in practice (NHS, 2013). The GSF register also helped Agnes as it ensured her team was aware of her and her needs. Good communication is essential in palliative care (Faull et al 2012, DH 2008). DH (2008) assert that further improving the skills of generalist palliative care providers is a priority for the future as more patients are choosing to die in their own homes.
Agnes’s care experience was affected by many factors but she was able to have a peaceful death surrounded by her family and a relatively comfortable last few months. It is conceivable that she could have received further support than she did but Agnes needed to feel in control and to have purpose. Providing extra carers would not have been what she ultimately wanted.
Following Agnes’s death her young family were supported with bereavement care from the specialist palliative care team and later, the generalist team. They appear to be coping well at present but may need further support in the future. Grief can be complicated and it can take years to progress through its stages (Stroebe et al, 2007).
The evidence to support structured bereavement visits is sparse and practice can vary widely between teams. Further research is needed to aid practitioners in ensuring they are maintaining contact for a suitable length of time before discharge. DH (2011) warns that greater evidence is needed about the effectiveness of bereavement interventions before it is incorporated into care as standard practice. DH (2008) end of life strategy has pledged to undertake surveys of bereaved carers to gain understanding about what is useful and what is not during grief. In summary Agnes received a good standard of palliative care both in the community and as an inpatient at the hospice.
Her physical needs of pain and nausea were treated, her social problems were addressed by the social worker and housing officer, she was given psychological support by the specialist nurse and the district nursing team. Finally, and most
importantly, her spiritual needs were met and she was allowed to feel at peace in death.
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Appendix 1: Case Study
Agnes is a 56-year-old lady with late stage ovarian cancer. She is a single mother with three children aged 26, 15 and 12; initially she had four her only son died of cancer three years ago. The palliative care team first knew Agnes before her diagnosis three years ago when her only son was at the
local hospice dying from prostrate cancer. The family had refused all support from the palliative care social work team before her son’s admission. They met briefly with a member of the team following his death for assistance with practical concerns such as arranging the funeral. Agnes spoke of having had bad experiences with social services in the past after her divorce from her first husband.
This made it very difficult for the social work team at the hospice to engage with her and her family and shortly after this meeting Agnes stopped all contact with the team and made it quite clear she did not need their input. Agnes was diagnosed with advanced ovarian cancer only two months after her son’s death and was referred to the palliative care team. Initially she agreed to see only the nurse specialist. However, after a few months some finance and legal issues arose concerning the children so Agnes agreed to see a palliative care social worker.
The social worker involved was able to phone weekly over a period of time to check how the family was and if they needed anything. In time, Agnes and the social worker built a rappor over the phone and Agnes agreed to the social worker visiting and she gradually built a relationship with Agnes and her eldest daughter Amanda, her main carer and, increasingly, carer for her younger siblings. Agnes introduced the social worker to the younger children and the social worker was able to support Agnes in discussions about her illness, death and dying and the future. With Agnes’s permission she was also able to work with the children’s schools, giving support and advice to the teaching staff.
Amanda was offered separate support as a carer and she began to talk a little to the social worker and the district nurse about her feelings and concerns. The weekly calls and regular visits continued for nearly a year. Agnes deteriorated gradually and became frailer; she admitted to the District Nurse who was visiting three times a week that she was now in a lot of pain and would need stronger analgesia to relieve the symptoms. Initially Agnes had declined any kind of opiates, as she wanted to stay alert at all times to spend time with her children; eventually she agreed to try out MST.
It helped with the pain but then Agnes started suffering from nausea and vomiting and she ate very little. An anti-emetic was prescribed and along with the MST her pain and nausea was under control; but she felt frail and unable to perform her activities of daily living so a social services community carer was put in place to relieve some of the pressure from Amanda. Agnes was of strong character and remained determined to be there for her children and to make sure they would be looked after once she was gone.
Agnes was assisted to complete a statement confirming that she wanted Amanda to have guardianship for the children when she died. Agnes was reassured that as none of the children’s fathers expressed an interest in being their full-time carers, it was unlikely that there would be any issues about Amanda caring for the family. The palliative care social worker was able to explain the roles of all involved to the family and although there were still concerns on Agnes’s part, the visit went well. After two more visits the assessment officer closed the case reporting that the children were well cared for and Amanda would be the most appropriate person to care for them in the future.
During this time, housing was also contacted on Agnes’s request and thanks to a very helpful housing officer who argued their case the tenancy of her council house was transferred to Amanda’s name. This work meant that Agnes did not have to worry about who would look after her children and whether they would have a roof over their heads after her death, as this was her main concern. As Agnes’s condition deteriorated the palliative care team started to discuss with her where she would like to die and her spiritual needs. Agnes wanted to be at home for as long as possible but wanted to go to the hospice for her last few days as she did not want to die at home in front of her children.
This was recorded in her advance decision. At this stage an end of life care pathway pack based on the “Liverpool Care Pathway for the Dying Patient” model was put in place by the District Nurse, with anticipatory drugs, as Agnes’s health deteriorated further. Two weeks later Agnes contacted the team saying she felt very unwell and tired and that she would like to come into the hospice as she felt the time had come for her to leave this life. Agnes was admitted in on a Monday and seemed to relax as soon as she arrived.
She died peacefully three days later with her children around her. The palliative care social worker met with Amanda and the younger children the day after Agnes’s death. Initially the family needed support with practical issues such as Agnes’s funeral and the transfer of benefits to Amanda’s name. The children are all took part in arranging the funeral and all their schools were informed; relieving some off the pressure of Amanda who had kept strong for the sake of her siblings throughout the whole ordeal.
Bereavement support from the team will continue for as long as needed but at present the family are very close and coping relatively well with their sad loss, slowly coming to terms with Agnes’s death, all knowing they followed her wishes, did all they could to support her and were with her when she died. Amanda and the children praised all the members of the multi-disciplinary team involved and thanked them for their care and concern. As everything that was needed was in place when Agnes died and her wishes had been met this proved to be a much better outcome that when Agnes’s son had died.