Advanced decisions in end of life planning

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Modified: 11th Feb 2020
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The advanced care planning (ACP)process is concerned with ensuring the patient has expressed their wishes should their condition deteriorate, leaving them without mental capacity or unable to communicate their decision.(REF LCP)Part of this process is allowing the patient to create advanced decisions with regards to refusing treatment (Joseph, 2010). As end of life planning is such a vast topic this essay will critically evaluate the key principles of advanced decisions with regards to Cardiopulmonary Resuscitation (CPR). CPR is an issue in many health care settings including hospitals, primary care, day hospitals and nursing homes. The ethical debate and the associated problems with advanced decisions are becoming ever more apparent due to the ever increasing number of elderly people in nursing and residential homes. (DH, 2000, 2010). Previous evidence based research has looked at helping elderly people and their families with decision making in end of life planning (references) as well as Patients requesting Do Not Resuscitate (DNR) orders against the advice of others (REF). There appears to be a gap in the literature concerning the complexity of the tensions associated between the nurse, the rights of the patient and family (or independent advocate) when the patient has specifically requested resuscitation in the event of a cardiac arrest against the advice of the multidisciplinary team. This reflection is based on an issue experienced within my practice and can cause many ethical and moral debates for the nursing staff. The knowledge gained from this reflection will inform my future practice on how patients’ rights are supported or challenged and the subsequent roles of the nurse.

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Gibbs (1988) developed his model of reflection in order to reflect on events, critically evaluate fundamental concepts and influence future practice. The first element of this model is based on experience and a description of events. Mr Smith is an elderly gentleman in his late 80’s currently living in a nursing home. He has one daughter and a son in law who he is close to and his wife and son passed away a few years ago. Mr Smith’s health has been deteriorating over a period of time and the staff nurses and his daughter want to begin the advanced care planning process. For the purpose of this reflection, names and personal data has been changed in line with the NMC’s (2008) policy on confidentiality.

It is often difficult to establish when a person is reaching the final stages of life (Ellershaw & Wilkinson, 2003), however factors have been identified in the Liverpool Care Pathway in order to allow patients to be assessed, including reduced performance status (Karnovsky, 1949); increased dependence in activities of daily living (Barthel, 1965); weight loss and overall physical decline (McNicholl, 2006).

Mr Smith had lost a significant amount of weight over the previous 6 months, was requiring more help with various tasks, including personal hygiene and often required the use of a wheelchair as he was becoming more unstable on his feet. It was due to this that it was felt the ACP process was necessary.

Effective nursing practice relies upon the ability to develop therapeutic relationships with the patient and family (Peplau, 1952). The qualities of the relationship include good listening skills, a build up of trust and empathy ( Watt-Watson, Garfinkel, Gallop, & Stevens, 2002). It is important for relatives to be included in discussions concerning end of life planning as it allows everyone involved to understand and come to terms with the decision (McDermott 2002).

A meeting was arranged with Mr smith and his daughter (after consent was gained) to disuss his care wishes in the event of his condition deteriorating. Mr Smith understood that his condition was getting worse but was adamant that he wanted every effort to keep him alive. Therefore, if he went under cardiac arrest Mr Smith would wish the nurse to commence CPR.

Cardiopulmonary Resuscitiation (CPR) is a complicated ethical decision comprising of many legal, ethical and emotional decisions for that of the nurse, patient and family (Jeven, 1999).

The principle role of the nurse is to assist the patient in restoring or maintaining the best level of health possible (NMC, 2004). Cardiopulmonary resuscitation (CPR) is a procedure that aims to prolong the life of an individual who goes under a cardiac arrest by attempting to restore breathing and increase oxygenated blood flow to the brain and heart. The decision to carry out this procedure should be based on any potential risks or benefits to the patient and should not be carried out with no regard to the quality or life expectancy of the patient (BMA, Royal College of Nursing & the Resuscitation Council, 2007).

These discussions led to a divide in attitudes as it was felt by the majority that a do not resuscitate (DNR) order would be the most sensible and realistic option. A DNR order is often implemented when a person is extremely ill and death is imminent (British Medical Association, 2007). Furthermore, if the patient has other chronic illnesses, which will reduce the quality or length of life, CPR has the potential to prolong suffering and do more harm than good and so would not be deemed beneficial (BMA, Royal College of Nursing & the Resuscitation Council, 2007).

However, Mr Smith did not agree with this and felt angry and confused as to why his family would suggest that a DNR would be appropriate. He was willing to accept the associated risks of CPR and maintained that his age should not prevent him being entitled to treatment. This statement is supported by equal rights for the elderly, in which people cannot be denied CPR just because of age (DH, 2001).

This decision appeared somewhat irrational as he had stated for some time that it was his time to go and he was fed up of suffering and his mental capacity was called into question.

The Mental Capacity Act (2005) states that an advanced decision (formerly known as an advanced directive) gives a person over the age of 18, who is deemed to have mental capacity, the ability to consent to or refuse a specific treatment if they become in a position where they lack capacity or are unable to state their decision. A person is considered to have capacity if they are able to understand and retain information in order to make an informed decision; be able to understand the consequences of any interventions and be able to communicate their decision (GMC, 2008). Current English law states that individuals are presumed to have mental capacity unless it can be proven otherwise and this does not take away the allowance for seemingly irrational and risky decisions to be made (NMC, 2004, BMA 2009, DOH, 2001, MCA, 2005)

Mr Smith was deemed to have full mental capacity as he fulfilled the criteria outlined by the MCA (2005) and a second opinion doctor was also called to ensure that this was the case. If the patient lacked capacity to make their own decisions, nursing staff must act in line with the patients best wishes (Dimond, 2006). In such circumstances members of the multidisciplinary team must be able to provide clear justification (Hutchinson, 2005). Had it been the case that Mr Smith lacked capacity it would have been reasonable for the nurse to justify not performing CPR, however, failure to comply with his wishes could potentially lead to legal and professional consequences as the NMC (2004) states that patients autonomy must be respected even where this may result in harm.

However, the ACP is not legally binding as clinical judgement takes priority (REF LCP). This can put the nurse into a moral dilemma because following professional and legal responsibilities would deny the patient their rights.

Beauchamp and Childress (1994) devised an ethical framework based on 4 moral principles to provide guidance on the conflict between the role of the nurse and the rights of the patient. Beneficence, suggests that any decision to be made must be in the best interests of the specific patient as well as weighing up potential benefit and risks (Beauchamp & Childress, 2008). In this case it could be suggested that the risks far outweigh any potential benefits and to do CPR would not be the greater good but this would affect the principle of autonomy. Autonomy is the patients right to accept or refuse any medical treatment. It follows deontological theories (Mill, 1982) which deem an action to be right, if it accords with a moral duty or code, regardless of the outcome (Noble-Adams 1999). This approach would justify the nurse performing CPR because they would be following their legal and professional code of conduct in that a patients’ wishes must be respected and carried out (NMC, 2008). However going against the patients wishes could also be deemed as morally right as part of the nurses role is to allow the patient to die with dignity (King,1996). Howver, this could be suggested as following the traditional notion of paternalism, which is not compatible with modern day ethics (Rumbold, 1999). All of these issues cause a moral dilemma for the nurse and impact upon the patients rights as it has been suggested that CPR can deny a patients right to die with dignity by prolonging the dying process (McDermott 2002) and so could be suggested that the greatest good in the situation would be achieved by not performing CPR.

The principle of non-maleficence is based on doing no harm (Edwards, 1996). Many people have unrealistic expectations of the success rates of CPR due to media representations (Dean 2001). Patients who survive cardiac arrests following resuscitation is as low as 20% and not all of these inidivudals get to the position of being well enough to be discharged from hospital (Cardozo, 2005). These rates of success are reduced even further when patients have underlying problems and poor health (Schultz 1997). However, it could be argued that the ultimate harm would be to do nothing resulting in death which would also be against Mr smiths wishes. The fact that Mr smith was already considered emaciated and having deteriorating health increases the risk of physical damage during chest compressions but as Mr Smith had already written an advanced directive stating he wished to receive CPR then this should be carried out (Pennels, 2001). This puts the nurse in a serious dilemma as patients and their families taking legal action is becoming increasingly common (Oxtoby, 2005) and the nurse is bound by the legalities of their professional code, which would claim that failing to carry out CPR would be considered negligent (Jevon, 1999) and as nurses are professionally accountable for their actions this could put their career in jepoardy(NMC, 2004).

The final ethical principle of Justice is concerned with fairness and equality maintaining that every individual has the right to life (Human Rights Act, 1998) and therefore, the patient has a right for the nurse to carry out CPR (even if they have not previously stated this) especially if they have an advanced descision stating that they wish to be resuscitated in the event of cardiac arrest. (Costello, 2002).

After all this has been taken into consideration, the rights of the patient, including those who have an advanced decision can still be overruled as before the decision can be applied there must be reasonable evidence to suggest that the decision is still valid and applicable (BMA, 2007). Mr Smith appeared not to be acting in line with his advanced decisions as he was refusing to eat or drink and appeared withdrawn in his personality, not wanting to participate in his activities of living (Roper, Logan and Tierney, 2000).

It has been suggested that many health care professionals do not discuss goals of care as they have inadequate communication skills or that there is often conflicting ideas between the patient and professional about what is in their best interests (Haidet et al, 1998)

As this has often found to be the case, one of the registered nurses decided to have a further chat with Mr Smith as it was felt that his needs were not being appropriately addressed. It transpired that Mr Smith did wish to die a peaceful death but was scared of what might happen and if he said he did not wish to be resuscitated then he could be left suffering alone in great pain in his last few minutes.

The Liverpool Care Pathway suggests that the role of the nurse in the last few days of life shifts to a holistic approach of care to promote comfort and moves away from the idea of active care which includes any invasive or unnecessary procedures that could be avoided (REFERENCE).

The Gold Standards Framework provides an holistic assessment plan to aid communication between the nurse and the patient, including how physical, emotional, social, spiritual and communicational needs came be met (Thomas, 2009)

The nurse stated that medications can be arranged for end of life care to alleviate any pain and suffering.

Discuss syringe drivers, end of life medication and controversy

During the final stages of life a natural physiological process causes the swallowing reflex not to work and so the use of oral medication is limited (Thorns & Gerrard, 2003). A common palliative care practice is to use a syringe driver to administer drugs (O’Doherty et al, 2001), which allows comfortable parenteral treatment of pain, nausea and breathlessness (Grassby&Hutchings, 1997). In most circumstances this form of medication administration comes without controversy (Woods, 2004), however, the ‘double effect’ of sedatives and opiates will reduce anxiety and pain but have also been claimed to supress respiratory function, which has the potential to speed up the dying process (BNF, 2007). The most important aspect of this double effect is that it is permissible so long as death is not intended and is occurs as a byproduct of an intention carried out for the patients best interests (Fohr, 1998). Furthermore, it has been stated that there is a lack of empirical evidence to support this claim (Kaldjian et al, 2004) and research has suggested that repiratory depression does not occur with patients receiving opiods for pain in end of life treatment (Walsh, 1982).

The role of the nurse is, therefore to allow the patient to die peacefully. However, health professionals are accountable for their actions and must be able to provide justifications if any problems arise (Dimond, 2004)

An assessment using the Abbey pain scale(INCLUDE MORE DETAILS) was carried out to analyse levels of pain experienced by Mr Smith and the appropriate drugs were administered via the syringe driver.

Mr Smith continued to deteriorate and died peacefully with his favourite classical music on, his daughter holding his hand and a picture of his wife by his bed.

She also clarified that the advanced decision he would have made was only concerned with CPR and did not have to decline all treatment just because he declined one.

The nurse asked him if it was clear the end was near what the staff and his family could do to help his transition into death. Mr Smith stated he did not want to be alone and wished to have his family with him to reassure him and comfort him in his last moments. The point of this discussion was not to overrule Mr Smiths advanced decision but to confirm its applicability and validity to his current circumstances. Details of these discussions were recorded in his care plan records in line with relevant policies (REFERENCE)

WHAT WAS GOOD/ BAD ABOUT EXPERIENCE?

GOOD THAT IT WAS REALISED BEFORE IT WAS TOO LATE

BAD COMMUNICATION

Analysis what sense can you make of the situation

On reflection of the situation the complexities of the tensions between the rights of the patient and the role of the nurse become alarmingly apparent. Nurses are expected to use evidence based knowledge to inform their practice centred on the NMC professional code of conduct. This practice can often involve moral dilemmas on life and death matters for which the nurse can be held professionally accountable. The nurses role is ever more challenging when the patient is entitled to make their own decisions, often deemed unwise or not in their best interests. This reflection informs my practice as it highlights the importance of not only allowing the patient to make an informed decision based on knowledge and evidence but also to explore their feelings behind the decision to be made. In this case it wasn’t that Mr Smith wanted CPR in the event of a cardiac arrest because he felt like it was the best option and would extend his life or the quality of it but because he was scared of dying and unsure of what would happen. As the nurse discussed his fears and anxieties and suggested ways in which these could be dealt with Mr Smith agreed that a DNR order would be the most effective way to ensure a peaceful and dignified death without prolonging any pain or suffering for him or his family. This experience has taught me that each situation is unique and there can never be any absolute right or wrong in nursing. Patient’s well-being depends on many factors including anxiety or unmet physical or emotional needs (Dewing, 2002). Communication with patients, their relatives or an advocate is of utmost importance when identifying individual needs as well as understanding the rationale behind decision making. Furthermore, communication between the multidisplinary team is imperative in order to promote best practice (Bridges and Wilkinson, 2011).

The insight I have gained from this experience will inform my future practice to understand the feelings and attitudes behind the patient’s actions and behaviours.

Conclusion what else could you have done

Action plan, if it rose again what would you do

Discussion

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