Health care professionals in public health are struggling with many challenges in taking care of end-of life patients. This occurs because care priorities in terminally ill patient are different from that of other patients with illness. Apart from care priorities, ensuring the dignity of person in dying is an important responsibility of clinicians and health care staffs. However, anticipating the demands of end-of-life care can be difficult due to lack of understanding about psychological, physical and social experiences of terminally ill patients. The lack of understanding about the health and emotional complications in end-of-life patients significantly compromise the health care goals and leads to many ethical and legal implications in one’s professional practice (Cribb and Tingle 2013). The essay will particularly analyze the top concern in palliative care and critically evaluate the performance of health care sector in palliative care. It will look into ethical and legal issues arising in end-of life care and suggest solution to determine the most appropriate step to overcome different legal and ethical problems in palliative care.
People at the end-of stage of their life have the right to supportive environment of care regardless of diagnosis. The holistic care provisions of palliative care are one which reflects individuality, autonomy, divinity and compassion in care practice. However this holistic responsibility is not fulfilled by nurses due to lack of skills and knowledge related to sufferings of patients. Often, instead of mitigating the sufferings of patients, their action leads to discomfort and unfavorable experience for patients. This mostly occurs, because clinicians and nurses focus just on clinical needs and fails to integrate the psychological and spiritual needs of patient in care plan. The provision of high quality and person-centred care for patients who are terminally ill has been subjected to debate for reforming healthcare policies and other initiatives. Ideally, patients are to be provided with support to bring an end to their lives in a suitable environment as per their choice, whether is it in a hospital or at their home. They are to be with people who care for them and are close to them. This would lay the provision for effective palliation of discomfort and pain, and the rights and dignity of the patients would be respected (Anderson and Chojnacka 2012). The last one decade has witnessed a slow shift away from the hospital-based end of life care towards a tendency to preferring to die at home. This implies that providing optimal care to these patients who are critically ill and are approaching the end of their lives is significant. However, a number of challenges come up for health care professionals, specifically nurses to care for such patients at their end of lives. At the end of life, it is obvious that care interventions would have the main focus on pain care and management and would be more frequent for the patient. Attempts to extend the lives of the patients or curing any disease are not the goal of nursing interventions. Nurses at the modern time are aware that caring for patients who are dying proves to be challenging. They are also aware of the obligations they have toward work and the complex ethical, professional and legal framework they need to work within. Professional and public debates are found to be revolving around the issues and ethical dilemmas regarding management and nursing interventions for patients approaching death. Nurses are to maintain the obligation to adhere to the ethical, moral and legal principles that are suitable for providing the philosophical guidelines for end of life patient care (Bass 2011).
According to Cribb and Tingle (2013) ethical theories of nursing is often complex and at a time more of an abstract to be applied readily in the regular clinical practice. The general principles of ethical theories include autonomy, beneficence, non-maleficence, justice, veracity, confidentiality and fidelity. Autonomy refers to the right of self-determination and beneficence refers to the promotion of the benefit or well-being of an individual. Non-maleficence applies that not harm is to be done to the individual. Veracity is honesty and fidelity are doing what is said. As per the Nursing and Midwifery Council Code (2015), nurses need to abide by a set of guidelines for ethical conduct. Nurses must respect all patients as individuals. They must also act in the people’s best interest. The patient’s confidentiality and privacy are to be maintained at all conditions. Promotion of trust and professionalism is also expected from them. Nurses are to be subjected to disciplinary procedures in case they fail to adhere to the ethical guidelines and need to have proper training for increasing knowledge and practical skills in this regard (Nyatanga 2013).
According to Chadwick and Gallagher (2016) nurses are to be aware of the ethical and legal principles of autonomy that is significant for recognising the individual’s right to self-determination and the right to choose own care plan and treatment regimen. This implies that care by the nurses is not to be given without the consent given by the patient. Consent is normally valid if the patient has the understanding of the potential benefits as well as the risks of the treatment that has been proposed for him. Such understanding of the patient can be enhanced through providing the patient with adequate information. Any treatment that is provided under a circumstance where the patient has not given his consent would be unethical and unlawful. This refers to the ethical principle of autonomy. The authors state that there may be certain situations where the condition of the patient may be deteriorating, and the patient may no longer be in the state to take up his own medical decisions. Since the nurses have an ongoing legal duty, they must know how to continue with care services in such cases.
The Mental Capacity Act 2005 (MCA) explains what is to be done in cases where the patient is not in the mental state to take up decisions. The capacity of the mental state needs to be done as per the sections 2 and 3 outlined in the MCA. If the patient does not have the capacity to take his own decisions, other alternatives can be then considered. The patient should firstly be asked whether he has previously expressed any views regarding his treatment options. This would be considered as ‘advance statement of wishes’ as an informal method or written advance directive as a formal method. Such approaches are required when there are considerations for refusal of life-preserving treatment, or in cases where the patient has appointed a lasting power of attorney (LPA) for making a decision on his behalf (Shuker and Newman 2015).
It has been noticed that death is a taboo in the United Kingdom in the modern times too. People are not comfortable to talk about death and may not be having much experience of it. They are also at times reluctant to concede the mortality by making a will or planning for death. It is, therefore, a concern for nurses to engage in a conversation with the patients regarding death. This might lead to distress for the patients. This is in relation to the ethical principle of non-maleficence. However, such discussions are considered as the basic need for the establishment of an honest relationship between the patient and the nurse, abiding by the principle of veracity. Nurses must on this account maintain a proper balance between the need to maintain honesty and the possibility of suffering distress. On the legal ground, in case the patent does not want to discuss the treatment plan and does not acknowledge that death is approaching, this can hold insinuation for the validity of their given consent (Grace 2013).
Further concerns may be arising in cases where the patient has not been informed about the prognosis. This concern needs a suitable approach in collaboration with the general physician of the patient. The GP needs to decide whether withholding the information is justified and ethical on the moral ground that if the patient is informed, then there is increased a risk of serious harm. It is to be decided whether the consequences of such serious harm is more than the consequences if the patient does not want to proceed with the treatment. Even if it is decided that the information would be withheld, regular revisits are required. There may be also chances that the information can be delivered later in such a manner that is acceptable by the patient. This significant issue is true at multiple levels; however, the nurse must first consider patient confidentiality in such cases (Chadwick and Gallagher 2016).
Mason, Laurie and Smith (2013) opined that nurses must recognise the fact that patients have the legal and ethical right to confidentiality, as per the Data Protection Act 1998 and Human Rights Act 1998, as well as the common law. Nurses are to abide by their professional duty to maintain the legal right of the patient to confidentiality. This forms a section of the contract of the employment of the nurses. In cases where the patients are not in the state of taking up own decision regarding care, the nurse must consider involving others in taking up the decisions regarding the end of life care. For instance, this can involve the determination of the preferences of the patient while making interests decision as per the section 5 of MCA.
If the patient has appointed an LPA, it is the legal obligation of the practitioner to consider them in decision making, and the approach needs to be similar to what it would have been if the patient was involved in the decision making process. If there is no LPA or advance directive, nurses may be holding the statutory authority to take up the decisions pertaining to the general day-to-day care, as mentioned in the section 5 of MCA. As an alternative, a patient may have nominated someone as his representative for discussing about the care processes. In other cases, a patient may have made a care plan that outlines the care preferences. In some instances, there may be the presence of both an advanced directive and an LPA. The applying laws may be of complex nature in these circumstances. Additional legal advice would be required in such cases, and the practitioner must show a responsible attitude as appropriate.
Whether the decision of care practices have been taken up by the nurse or the LPA, in case the patient does not have the capacity to provide consent for any certain intervention, the principle of best interests would guide the decision of proceeding with the intervention. It is very much necessary that the known preferences of the patient are taken into account, and psychological and social benefits are considered in addition to medical benefits. The significance of involving the patients in honest and open discussions regarding the patient conditions is transparent. Such engagement enables a patient to share the concerns, preferences and feelings well in advance so that there are no rising hindrances while delivery of end of life care. It is an integral part of the complete and comprehensive care process. Interventions for maintaining the dignity and comfort of the patient, like administration of analgesia and giving oral care are to be carried out in the best interests of the patients. However, some challenging decisions may come up in such contexts. Such decisions would probably be in relation to increase in the dose of medication and analgesics or discontinuation of treatment at the end of life (Brinkman-Stoppelenburg et al. 2014). Under such situations, other ethical and of course legal contemplations may arise which would next be discussed.
The exact number of dying patient experiencing pain has not been recorded till date. However, rough estimates of patients receiving palliative care who need analgesics for relieving pain vary from 50% to 95%. Apart from psychological, spiritual and emotional pain, patients are presented with the chance of experiencing the feeling of when they are to die. Chances are high that the patients would have an experience of pain when they are approaching an end of the lives (Higginson et al. 2013). The intensity of pain is different for different patients, irrespective of the fact that whether the pain has been caused by non-malignant pathology or malignant pathology. Other forms of unpleasant symptoms may also occur, as a result of co-existing morbidities or terminal illness. Like instance, four patients would be having dyspnoea out of ten patients who receive palliative care. An uncontrolled form of pain leads to an adverse impact on the ability of the patient to carry out the daily activities of living. Moreover, the relationship with the loved one would also be affected. The ability to communicate with other would be impaired and this condition would continue to remind the patient of hi declining condition. Such conditions would possibly exacerbate the anxiety patients feel and make an impact on the time left in hand before dying. It is expected on professional grounds that nurses would practice evidence-based care that is of high quality in itself. Relieving pain and other symptoms of distress is an ethical obligation and a legal duty. Negligence is the term associated with failure to fulfil the legal duties (Wright et al. 2014).
In cases where care is not up to the expected standards, investigations would be carried out as per professional practice, and evaluation would be done by the respective courts. As per the legal obligations, a health care practitioner demonstrates negligence if his acts are not as per the practice accepted by the responsible authority body. This holds the implication that nurses are obliged to deliver optimal care that is widely accepted by others who work in the same field of practice. Any allegation coming up regarding the negligence of nurses is to undergo evaluation the court in agreement with professionals working in the similar field and other suitable guidelines (Lamont, Stewart and Chiarella 2017).
Nurses who are responsible for the end of life care are faced with multi-faceted challenges that are complex in nature. As per the current trend, an increasing number of people prefer to die in their homes as compared to the scenario a decade back. Patients having multiple morbidities, patients who are frailer and patient who are older fall into this category. It has been highlighted time and again that the scope of palliative care holds significance beyond the emphasis on diseases that are malignant in nature to patients who are about to die due to a range of conditions like dementia, respiratory conditions, cardiovascular diseases and neurological degeneration. Since the available treatment options to be given to patients are sophisticated and complex, there is an increasing demand that nurses are to develop their skills and increase their knowledge for accommodating the varied health needs. The recent up-to-date guidelines and policies present on the wide range of comorbidities and life-limiting conditions are to be followed by the nurses if they want to uplift their level of care (Gomes et al. 2012). Gomes et al. (2013) in this regard state that though healthcare practitioners have a duty to deliver the best care to the patients, no legal obligations for providing treatment at all costs are laid out.
The law puts up a perfect distinction between an action made to deliberately end a life, referred to as murder, and an action where shortening of life is the purpose. When a patient approached death, interventions and management of pain along with other symptoms could become highly composite and could need proper assessment for using the variety of pharmacological resources and non-pharmacological resources. Opioid analgesics, like morphine that are strong in action are useful for the treatment of pain and symptoms causing distress, for instance, dyspnoea, for patients approaching death. These drugs are constantly being used in different settings for primary care. A rich pool of evidence indicates that administration and prescription of such strong opioids are inhibited by the unwanted fear of becoming addicts. Patients show reluctance in accepting morphine as an analgesic (Dijk et al. 2015).
Nurses often feel uncomforting when they are to administer opioids since the use of such drug may hasten death. Nurses also fear about the chances of respiratory depression that can arise due to high doses of analgesics. Consequently, a number of ethical and legal concerns may together compel the nurse not to deliver symptom control measures. No proper conclusion has been derived in relation to the proofs on opioid analgesics bringing about death the ethical and legal justification of this certain element of care has been defensible by the principle of double effect. This is a principle of law as well as ethics and is commonly applied in cases where the result of doing something guided by good intentions leads to adverse impacts. While the doctrine is used for defending treatment, prescribing drugs to being about death cannot have a justified explanation (Creedon and O'Regan 2010).
Childress and Beauchamp (2013) focus on the fact that it is not easy for patients to have a proper understanding of the concept limited treatment when futile cases happen. A number of concerns evolve regarding ethics of limiting medical care as patients as well as their families do not have the basic understanding. Physicians and care providers work towards the duty of explaining the patients and family members about the refusal to treatments. This task can, however, be challenging. Bioethics comes into play in this case. As per bioethical norms, limiting treatment is ‘rationing of care’ where decisions are taken unanimously for refusing treatment. No certain criterion is present regarding the differentiation of futile treatment. Therefore the factors on the basis of which decision is taken are case prognosis and expert judgment. Such rationing of care may be considered justified if one judges that access of care must be more for those who need them more. It can hold the position of equitable justice and is practised across the globe in many healthcare settings.
One major issue arising in the review of the LCP is the discontinuance of nutrition and artificial hydration at the end of life. Legality and ethics of withholding nutrition and hydration, the basic requirements for humans, have given rise to widespread concerns. Family members of the patients who are denied water and food find it difficult to accept such situation. Moreover, the nurses too find it uncomfortable to deny nutritional and hydration support to the patients. Patients may be reaching a point where their tolerance for oral fluids and food may be declined. Proper evaluation and assessment of the condition of the patient are to be done, and such decline of ability to tolerate fluid or food is not to be confused with the normal pathological process of dying. The general physician must decide whether artificial hydration would be beneficial for the patient. The best interests of the patient are to be kept in mind in this regard (Urden, Stacy and Lough 2017).
According to Raijmakers et al. (2013) withholding, the most essential components of care may be unethical, and it may be a concern for the nurse that it may also be illegal. The law indicates that artificial form of nutrition and hydration, like subcutaneous or intravenous infusions, are to be regarded as medical treatment. In spite of the fact that such interventions would be given keeping in mind the best interests of the patient, it is also to be acknowledged that in cases where prognosis is poor there would not be any obligation to prolong the life. The law is clear that when a patient reaches a point where death is near and oral fluids cannot be tolerated, no obligations lies to administer fluids in some other form unless doing so would be as per the best interest of the patient.
There are many cases where though the nurses have the common duty of care towards the patient, no obligation is there for providing interventions only because of the fact that the patient had requested for it. The general position is that health care practitioners can exercise the professional judgment as per their will and take up decisions for offering one alternative intervention in place of another. They also have the right to refuse adapting to a certain treatment on the basis of the idea that it may be medically contraindicated or some other issues may be prevalent. While it would be an ethical and legal obligation to provide a patient with palliative symptom control and pain relief medicines as a part of the end of life care, there is no need of upholding his right to autonomy. This is because doing such a thing would be unlawful. Apart from such exceptions like self-defense, human life is always to be considered as inviolate regardless of the fact whether the concerned person has given consent to the violation. Though suicide is not to be considered a crime, assisting someone to end their lives would be a murder and therefore assisted suicide, or euthanasia is not to be considered suitable (Grace 2013).
At the end of the essay, it can be concluded that healthcare providers are to take up an active initiative for having an appropriate end-of–life care delivered to the patients. The goals of such a care process need to be discussed with the patient before the initiation of the care process as the preferences vary from one patient to another. Some patients have the preferences for comfort care while others target cure. Therefore, the trustful communication between a patient and care professional would avoid any possible ethical crisis revolving around such concern. The main focus of patient care needs to be an establishment of effective communication with the sole aim of giving care fulfilling needs of the patients. However, this may not be possible for all cases. Professionals may be presented with a number of challenges in due course. In the present era, an increased number of patients prefer to die at their homes, as they get familiar surroundings. It is crucial that nurses give them a ‘good death’ by confidentially managing the ethical and legal issues. Stability of health preference goals is an issue since it can change with disease progression. Therefore it is necessary that each case is renewably evaluated for considering the best scenario-based preferences. Healthcare professionals have a role in education, discussion and communication of care choices in order to foster better decision making. Community standards are found to be good in cases where the desire of the patients from the treatment process is not demarcated. A public dialogue that discusses the dilemmas can suitably facilitate developments and subsequent implementations of guidelines and policies that safeguard patient’s interests. More progress is required for addressing the ethical concerns surrounding such situations. With an advancement achieved in medical science further research is demanded. Recommendations and implementation of inferences drawn from research can optimize care quality and improve the end-of-life journey.
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