A terminal illness has major impacts to the patient and their carers. Once diagnosed, the patient experiences distressing and painful periods with adverse limitations in the lifestyle brought about by the illness (Bosslet, et al, 2015). Coping strategies at times can also cause friction between primary carer and other family members (Haughey& Watson, 2015). Ewing’s case is already taking that direction. Health professionals can help in ethical issues when they arise (Wallace, 2015).The person can continue to receive treatment to help manage the symptoms but not cure their illness (Haughey& Watson, 2015). End of life care helps everyone affected by the diagnosis have the best quality of life (Goodwin, et al, 2014). It also includes additional support and help with legal matters.
Eric being Ewing’s carer for the longest time now has a role in supporting Ewing as his health and ability to care ofhimself diminishes. Being the principal carer he has to help Ewing in all his activities of daily living which is a more intensive care. As a carer he has a duty to help the patient to be healthy and well the best way possible (Goodwin, et al, 2014). Ewing’s health has shifted from curative treatment to palliative care which shows an increase in need for more support and physical care. This requires an informal carer who will provide physical and emotional support to a patient with a life limiting illness (Horrell, Stephens &Breheny, 2015). As a carer, Eric has values of commitment and care. Caring for a sick person is demanding and exhausting and difficult and requires more patience(Horrell, Stephens &Breheny, 2015). As a result, commitment needs to be built to improve patient’s care and experience while taking the necessary actions to handle the challenges ahead. Eric is committed to care for Ewing with the assistance from Debbie, Ewing’s daughter.Care as a value is at the center when delivering help to any sick person. It is a feeling of concern or interest towards them. It helps improve their health and wellbeing. The type of care depends with the individual needs, choices and wishes in every stage of their life (Goodwin, et al, 2014). Eric is committed in giving Ewing the best care even as he nears his death. For this reason, together with Debbie they opt to buy a wheelchair and a mechanical lifter to help the patient in easy movements around home. He wants the best care for him and prefers him to be at home for the best palliative care rather than hospital where the patient may feel lonely, not loved and less catered for. Being a carer to Ewing for nine years, Eric has altered his own lifestyle to meet Ewing’s needs. It also means accepting the situations and making adjustments in one’s own life(Horrell, Stephens &Breheny, 2015). Commitment to care is about giving priority to other things other than oneself(Goodwin, et al, 2014).
Decision-making is about choosing a good choice from the options available through weighing the positives and negatives of each option available and the outcome of each when applied to the situation at hand(Holroyd-Leduc, et al, 2016). Based on this the best option is determined. In relation to the case study, Eric’s decision-making is about what was beneficial to Ewing at the moment. Ewing’s condition had no known treatment or any form of medication that would alter the trajectory of the disease. All he needed was palliative care until his time came (Bükki, et al, 2014). Eric and Debbie had already made a decision to care for him at home. There was no need for him to be kept under hospital care when there was no proper attention required at the healthcare. Eric had made a commitment about Ewing’s care and together with Debbie’s assistance they went ahead and bought the necessary equipment they thought were the best for the patient. Out of commitment and care that Eric had created a long-lasting relationship with the patient. Commitment is not a value for the weak(Holroyd-Leduc, et al, 2016). It requires persistence, self-discipline and resilience. Eric having made a decision of taking care of Ewing until his death, he had to stay committed to it. Commitment is about sacrifice. It binds one to a promise, course of action, a firm agreement and a pledge (Holroyd-Leduc, et al, 2016). He had made a sincere and a serious decision about the care and was determined to see to its completion. He is happy when Ewing is discharged for home. He is concerned and more attached to the patient and looking after him and providing for his needs is his priority (Sizoo, Grisold&Taphoorn, 2014).
The disagreement between the family members on Ewing’s treatment needs to be looked into on both sides to enable proper understanding that can bring a consensus. The degenerative neurological condition has already caused severe damages on him and no medication to cure or improve the problem. Owing to this he can only continue to receive palliative care. The disease is progressive and death can be reasonably expected.Treatment to Ewing through parenteral hydration and artificial nutrition was a non-beneficial treatment (Houben, et al, 2014). This is because the intensity of treatment and the expected degree of improvement in quality of life was minimal (Haughey& Watson, 2015). The patient was also aware of his condition and felt no need of going to the hospital though proper monitoring was essential. End of life treatment to him was ineffective, costly and not in line with his wishes (Bosslet, et al, 2015). This limits medical care. Veracity in healthcare is important to enable patients and families make informed consent(Houben, et al, 2014). Patients and families rely on health professionals for information about their care. They need to be told the truth (Wallace, 2015). End of life and palliative care helps patients with life-limiting or life-threatening illness(Haughey& Watson, 2015). It helps in managing symptoms and providing assistance and comfort. The care offers emotional, mental, social and spiritual needs. It also provides practical help with daily activities. End of life and palliative care aims at improving the quality of life for the patient, family, friends and carers (Wallace, 2015). The care is not only for people nearing the end of life but also for people with chronic ongoing illness. The care is best begun early in the disease to help the patient have the best quality of life, with his wishes, for the longest time possible(Houben, et al, 2014). Palliative care can be received home, palliative care unit, or at a local hospital.
To begin with, the degenerative neurological condition had impaired Ewing’s decision-making capacity. The patient was not in a condition to make an informed consent but his son requested the paramedics to further assess him at the hospital. If the patient lacks decision-making capacity or lacks competence regarding their treatment, another person must make decisions on treatment for them (Brazier & Cave, 2016). To have a capacity of decision-making a patient must have understanding, appreciation, reasoning and the ability to express a choice (Cartwright, et al, 2016). In cases where the patient lacks the capacity a surrogate decision-maker can intervene (Callaghan & Ryan, 2014). They can be legally appointed or next of kin(Moye, et al, 2013). Next of kin includes spouse, adult child, parent, adult sibling, close friend, or ethical committee. Dean being the adult child gave the paramedics the directive to further monitor his father.
In reference to Queensland legislation, a substitute decision-maker is a person allowed by the law to make decisions on behalf of a person who lacks the capacity to make informed consent by him or herself (Chesterman, 2013). When it comes to substitute decision-making, a person can have more than one. Decisions to be made can be on personal or financial matters (Carter, et al, 2016). Health is a personal matter. When one has not appointed a substitute decision-maker and their capacity is impaired, a statutory health attorney is appointed by law to make health decisions for the person (Chesterman, 2013). Other culturally appropriate people for the role are; a spouse or de facto partner with whom one has a close or continuing relationship, a primary carer who is not paid and is above 18 years of age, a close friend or relative above 18 years and not being paid for the role(Carter, et al, 2016). Failure to meet the criteria, the law appoints a public guardian as a statutory health attorney. An eligible substitute decision-maker must be 18 years and above, have decision-making competence, follow the patient’s values and instructions, readily available to for the role, willing to accept the decision-making responsibility, and have the ability to make decisions even in stressful situations (Tilse, et al, 2014).
Eric being a primary carer for Ewing, he has lived long enough caring for him and is aware of all his needs. Eric and Debbie were well aware of Ewing’s condition. Before considering palliative care for him, the healthcare had informed them that there was no option treatment available for his condition. Knowing this, Eric was committed to caring for Ewing at home until his time came. He is also able to observe the necessary requirements by the patient at that particular moment to give him comfort(Then, 2013). The responsibility of a substitute decision-maker is that they must act in the best interest of the person, make decisions with the capacity they would have made for themselves, have knowledge and understanding of their medical condition and the expected complications in the future, have an understanding of future medical care options which entails current and future treatments benefits and risks, carefully considering the patient’s wishes and choices regarding their end of life care, talk about the choices of the patient with his or her family(Then, 2013). Eric being a carer is always available to take the role, he has a commitment to fulfill which means he would be willing to accept the responsibility. He knows what the best for Ewing is and is happy when he is discharged even when Dean does not want it. He also makes decisions in stressful in stressful situations.
Ewing is impaired mentally and lacks the capacity to make decision regarding his health. The Principles Act seeks to oversee the rights of a person with disability in decision-making is independent and receives the needed support(Then, 2013). Ewing needs someone committed towards his care to live the best life he wishes for in his health condition. The presumption capacity highlights that adults are believed to have their own capacity of making decisions except where it is found out that they cannot(Then, 2013). The degenerative neurological condition has already impaired Ewing’s decision-making. Eric is already in a position to offer the best palliative care to the patient. He is aware of his best needs. Irrespective of capacity in decision-making, the basic rights are equal to all people(Carney, 2014). It is the duty of substitute decision-makers to see to it that the person exercises their rights (Then, 2013). Their human worth and dignity should also be respected despite their situation(Then, 2013). They must also be encouraged and supported in to perform their social roles. Despite Ewing’s condition affecting him greatly, he still has the role to play as a home owner(Carney, 2014). A decision-maker must also encourage the person to be self-reliant and autonomous physically, emotionally, socially and intellectually the best way possible (Then, 2013). Eric spending most of the time with Ewing, as a man he knows what he needs best to be self-reliant. He is also less restrictive and offering proper care and protection that is consistent. He has been with him for a long time and his plan is to take care of him at home until his final rest. A person’s environment and values should also be maintained. The assistance given to the person should also be appropriate and meets the current needs and suits their individual characteristics (Carney, 2014). Eric wants the best for Ewing and needs him to be independent the best he can. To do this he goes with Debbie to source for a wheelchair and lifter for Ewing. He knew he needed it for the moment.
Conclusion
When it comes to caring for a patient, care should be at the heart of everything taking place in improving health and wellbeing. Individual needs, wishes and choices should be considered at every stage. To fulfill all these requires commitment. The core values should also guide in deciding the best for the patient. Ethical dilemmas are frequent in patient care. Health professionals can help resolve by maximizing benefits, respecting the preferences and reducing pain and suffering to the patient and facilitating communication. Futile treatment is not ethical in healthcare.If a patient lacks decision-making capacity another person can make decisions for them.
References
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