Differences of Opinion in End of Life Care
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Published: Tue, 14 Aug 2018
The case study relates to an expected death of one of the residents who lived in a care home that provides nursing care and support for older people with many various conditions. Mr. X became frail after a couple of months of admission to the settlement. Lastly he was treated by antibiotics for various infections, mainly chest and urine (four times within a short period of time – 8-9 weeks). Regrettably his body appeared not to respond to the treatment used. He was losing the ability to decide about himself gradually. Due to Mr X’s limited mental capacity one of his sons had power of attorney (POA) in order to make complex decisions related to his father care. Adult with incapacity (AWI) certificate was in place. Suddenly Mr X’s condition deteriorated rapidly and actions were required in relation his end of life care. POA holder wished Mr. X to be transferred to the hospital for further, invasive treatments. However staff members were of the opinion that according to Mr X’s wishes he would prefer to be cared for within his present settlement.
The issue in this situation was: differences in family and staff views at what the patient stated he would want to have and by whom he would want to be cared for at the end of his life.
The identified problem was the risk of abuse of the patient’s autonomy. Although the son had good intentions to prolong Mr. X’s life because he was anxious and did not know how to approach the decision making, staff felt that Mr. X was becoming more ‘an object’ and not a person.
According to Department of Health (DH) abuse can have unintentional complexities stemming from relationships of individuals involved (DH, 2000).
The team lead by myself had to face a difficult and complex task of being ‘the advocate’ (Hurst et al., 2008) of Mr. X and brief the son about his fathers’ wishes.
Under Mental Health (Care and Treatment) (Scotland) Act (2003) Mr X have chosen his son, to have power of attorney (POA) to make decisions about his health on his behalf, but he also specified in advance that he does not want to be transferred to hospital at last stages of his life. The NHS (NHS Choices, 2015) state that one cannot override this decision unless the POA specifies that the acting on behalf has the power to do so which was not the case
We had to find a way to explain in a tactful manner that the approach to care will be palliative with rather sad prognosis trying to remove some of the stress from the difficult situation.
At the same time documentation had to be looked through accurately; checked and analyzed and completed to have new care plans related to Mr. X final life stages in place. This was to ensure accountability and demonstrate how decisions related to Mr.X’s care were made (The Nursing and Midwifery Council, 2010).
As trained staff, leading the unit and being directly involved in Mr.X’s care I was responsible for passing reliable and factual information assuring the best outcome for him but also for coordinating the team and communicating with the family. Bass (2008) recommends democratic approach that allows the leader balancing the decision-making stage by encouraging participation; by being consultative, consensual and concerned with people.
Foster (2002) claims that the best way to manage challenging situations is to estimate what needs to be done, how and by whom it needs to be done .
Mr.’s X’s condition deteriorated very rapidly and because the event was taking place within ‘doctors out of hours’ advice have been sought trough NHS 24 phone line with the resonance of a doctor’s visit. This was done to seek an opinion and to discuss the best treatment available for my patient which involved pain relief and comfort making as well as to assure the son that all available resources have been used to provide best possible care for Mr X.
Seeking advice and asking the doctor to explain to the POA holder, why staying within the settlement would be better for Mr. X related to Bateman’s (2000) view of collective decisions making when acting on someone’s behalf.
A member of staff, known to have very good relationship with the son was appointed to have an initial chat with him whilst Mr. X has been seen by the doctor. Palliative Care Guidelines (2013) suggest appointing a person who knows the patient well that is able to affirm life and regard dying as a normal process of life when communicating with the family. Delegating the right person for the right role is also urged by Stranberg (2015) who explains that it frees the leader up to tackle other important aspects of the mission. Motacki and Bruke (2010) add that delegating increases confidence and morale of subordinates and this way improves quality of care that they deliver.
However, irrespective of the advantages of the democratic approach, there was little visible effectiveness in terms of Mr X’s deteriorating condition. Kane and Patapan (2012) claim that one of the disadvantages of the democratic approach is that it takes a lot of time. Mr.X’s situation required a less time consuming approach. Sadler (2003) argues that when decisions need to be made quickly authoritative and autocratic styles are the most effective. They allow strict but clear directions (autocratic) and assure credibility (authoritative).
Whilst one of the delegated team members was talking to Mr. X’s son, the most appropriate treatment for Mr X was discussed between me and the doctor; the prognosis for Mr X were, alas, maximum a couple of days. Although the role of a nurse in a care home evolved over the last years there is a negative stereotype in the public related to care in nursing homes and many nurses find it hard to match the social status that a doctor carries with the title which is often voiced by the family members ( Sanders, 2012) To avoid the possible course of action related to who passes the information I have asked the doctor to speak with the son and explain the advantages of making a ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR) decision.
Brass (2008) explains that the autocratic leader decides, directs and controls all activities and is an effective forward thinker assuring at the same time good but strict organisation by keeping close regulation of policies and procedures.
Kane and Patapan (2012) alert to use the democracy wisely explaining that, at times, democracy can do more harm than help. Although the democratic style is often considered very effective it demands a lot of time to set a plan, let people contribute and then opt for the best course of action.
Both styles used enabled the team to organize and plan Mr. X’s end of life care in a desired way. The autocratic/ authoritative style by giving me confidence and resources in the form of pain and distress relief medication that were in place to be used when required and the DNACPR. The democratic discussing proposed course of actions with the doctor, the team and the family member. Peters (2005) encourages to mix styles in order to be effective but underlines that it is needed to have a broad repertoire of styles and to use them appropriately.
By choosing the member of team who was familiar with the family I have managed to reduce the barrier between the POA and staff; and empower the team to take an active part in the tasks. This approach concerned both: Mr. X and his son and the members of the team. … claims that team leaders and managers should pay attention to building team relationships because it helps the team to meet the established goals and objectives and to work as one cohesive unit. … Ward (2002) adds that nursing needs leaders that can be facilitators to humanize their workplaces and this can be achieved by paying more attention to the people that work for an organisation. Creating the atmosphere of good relationships we have gained more time to plan individual care for Mr. X, as per his wish.
The case demonstrated application of ‘demo autocratic’ approach by mixing the two styles often perceived as opposites.
The desired outcome was to help the patient to die comfortably and dignified and to help the son understand and accept his decisions (made when he was still capable) regarding his last days of life.
The team had focus on the quality of care for Mr X that would mirror his wishes; […. in his room, looking at familiar faces around him, with his favorite music in the background, comfortable and pain free…]
The established goals refer to ’7-step protocol to negotiate goals of care’ recommended by Buckman (1992) and to Scottish Palliative Care Guidelines (NHS Scotland, 2014)
Involve the entire team; encourage effective communication and a forward thinking approach; create the right setting – ensuring time and atmosphere to discuss the situation
Determine the POA awareness and compare it with Mr.X wishes to clarify the context
Check documents and explore what Mr X. was expecting and hoping for, compare it with POA holders’ expectations and explain best possible outcomes.
Suggest realistic objectives; consult the doctor; organise DNACPR
Alert everybody in the team to offer support and act in a sensitive and tactful manner knowing emotions that may arise.
Make a plan and follow through – how Mr.X’s symptoms will be controlled and managed; appoint staff to observe and report changes in Mr. X condition, co-ordinate care; have pain and distress relief medication in place to be used when required;
Review and revise Mr. X ability to eat and drink; his comfort; medication and doctor/nursing interventions required
Have daily and hourly charts to control hydration level (fluid chart) and comfort (hourly turning chart) analyse them and act appropriately.
To implement the goals it was important to obtain Mr. X’s sons agreement to continue with providing the care for Mr X within the care home. Mustafa (2015) suggest using imaginary approach and recommends talking about thoughts, values, wishes and desires of the dying person which helps to understand their points of view to end-of-life. Katz and Peace (2003) claim that this approach aims to enable a family member to put him/herself in the place of the dying person helps them choose as he or she would like.
My duty was to coordinate the team- delegate tasks and people; control the situation and act in Mr X best interests by communicating with staff – explaining why and what is the desired outcome; document -write and implement ‘end of life care plan’: including pain and distress relief; hydration, skin care and wellbeing in terms of comfort and dignity.
This related to an approach known as best interests (Katz and Peace, 2003) with the aim to decide what would be best Mr.X
Delegating staff helped to provide good quality of care for Mr.X and demonstrated that our actions were not about ‘passive watching a dying person’ but about fulfilling Mr X wishes. Contacting the doctor and discussing Mr.X condition helped in implementing goals related to pain relief and distress as well as in obtaining the DNACPR decision. This meant for the team that all appropriate treatments will be given but we will not attempt CPR to let Mr. X pass away peacefully. The rationale for the DNACPR decision was explained to the son by the doctor making it clear that transfer to hospital was not appropriate. The steps undertaken are amongst others recommended by Morris and Collier (2012) in as guidance for care workers dealing with patients at their ends of lives.
It was essential to involve the whole team and to trust each other in order to follow through the plan made earlier, ensuring that Mr X’s symptoms of pain and discomfort were controlled and managed. So once we had the pain relief and DNACPR in place to be used when required, it was needed to have dedicated people who could ‘flag up’ the moments of implementing them into practice. We had an explanatory meeting to alert staff to observe and document Mr. X’s ability to eat and drink; skin and his general comfort by completing daily and hourly charts to control hydration level (fluid chart) and comfort (hourly turning chart) to analyse them and act appropriately. This required excellent communication skills from the entire team. (….) underlines the importance of care workers’ ability to use wide range of communicating skills such as nonverbal: touch, watch facial and eyes expression and listen.
This way we could receive information about a particular of care aspect that needed to be addressed.
Old and Swagerty (2007) mention that setting goals and their implementation is a challenging subject in the palliative care because the customers views differ from their families. The patients’ needs relate in the majority to sense of security, comfort and quality of life whereas the families focus more on the revival itself. The implementation of the goals set by the team related to the abilities of seeing the “whole” patientwhich is considered the underpinning philosophy in palliative care (Twomey et.al. 2007).
According to Crowie et al. (2012) case studies allow in-depth, multi-faceted explorations of complex issues in real-life settings and are often used to improve health care.
Nursing teams have a constant presence in the patients’ life within care home settlements, while other healthcare professionals or relatives visit them with varying frequency and for limited periods of time. Therefore the teams are the direct environment for the people that they look after and depending on their professionalism, knowledge, style and compassion, the patient’s quality of life may vary. They deal with different conditions and face many challenges that can result in poor care delivery (Care Quality Commission (2013/14)
Their attitudes to care are often perceived as more task based than person centered.Patients however, like Mr. X, often cannot decide for themselves and therefore need to be treated with even greater respect, dignity and compassion (Care Quality Commission, 2013/14)
Although Mr X was considered at the end of life as he was likely to die within the next 12 months at admission to the care home (The General Medical Council, 2010) there was no clear instructions within his files of what do when his condition changes suddenly. The appointed by Mr.X POA holder had the right to make decisions for him regardless Mr X’s wishes that were nuncupated to staff only.
Respecting his wishes the team made a great effort to act in the best interest of Mr.X
This related to the use of various components of management and leadership. The Quality Compliance Systems (2014) highlights that the delivery of successful health and social care services relies on effective management and strong leadership. The Nursing and Midwifery Council’s (2004) guidance implies an active approach from nurses is expected, using the terms ‘protect’ and ‘promote’ in relation to the rights of terminally ill patients and directs that “nurses must respect the rights of the individual and the patient/client’s role in planning their own care. Nurses are seen as advocates for the customers and have a legal, moral and professional duty to care recognising the customer’s right to individual choice at all times”.
There is however evidence of inconsistencies in palliative care services (House of Commons Health Committee, 2004) and this is why care teams need to take active part in creating ‘cultures of high quality care’. Dixon-Woods et al. (2014) state that there are four key elements: “inspiring visions operationalised at every level; clear, aligned objectives for all teams, departments and individual staff; supportive and enabling people management and high levels of staff engagement; learning, innovation and quality improvement embedded in the practice of all staff” to ensure compassionate care and high quality of care for patients. West et al. (2014) add team working as the fifth crucial element of improving quality of care.
- The family could have been explained the palliative care approach before the rapid deterioration of Mr X condition.
- Trough more effective communication and a forward thinking approach discussed with the family the issue of the suspected abuse of the autonomy would possibly become non existent
The GP could have been contacted sooner to discuss CPR decison.
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