Palliative Care and Life Limiting Conditions

Table of Contents

Introduction..

Body..

Analysis of End of Life Care and Related Issues to It

Legal Issues: Overruling Decisions.

Managing the Issues Using Defined Policies & Framework.

Conclusion..

References.

Introduction to Palliative Care and Life Limiting Conditions

In medical care, a patient may die under unknown circumstances and sometimes death is sudden or tragic. Out of the majority cases, patients are living limited life with illness or say some hours or days, after they informed about non-treatment and prevention of their illness. There is a caring stage within limited life known as end to life care whether patient is child or young person. This assessment is based on legal and ethical perspectives surrounding the capacity of children and young people under the age of 18 to make end-of-life decisions (Fahner et. al., 2020). Basically, assessment will talk about ethical & legal issues that may interfere in between patient’s end of life care. Here, the focus term is “End of life” is a care process which includes physical, emotional, social and spiritual support for the patients and families during limited life lives. This report will discuss certain challenges that may occur, when a patient is under end of life care stage. There are ethical & legal perspectives relevant for children and young person, while making end of life care based decisions. This assessment will co-relate evidence based practice, practice guidelines and policy to enable the patient to take favourable end of life decision.

Body of Palliative Care and Life Limiting Conditions

Analysis of End of Life Care and Related Issues to It

End of life care is a process which includes physical, emotional, social and spiritual support for the patients and families. The main goal of end of life care is to control critical pain and other symptoms, so that the patient can comfortable as possible (colón & wladkowski, 2019). end of life is considered as the last stage of the person’s life, when they are told by the doctors and other care staff with no chance of survival due to illness. For children and young person, end of life means limited available whether hour, day, week or month.

During end of life, nurses of the health care centre provides some necessary cares such as food, check up, physical & mental care to the patient, once they entered limited life stage. It may include palliative care, supportive care, and hospice care (Providing Care and Comfort at the End of Life, 2017). During end of life care, panics and mental issues may occur for both patient and his/her family that is most difficult work to be done by nurses effectively.

There are certain challenges would occurs such as depression, intense emotions, loss of dignity, physical pain, hopelessness, and mundane tasks that need to be addressed at the end of life (When end of life cares involves 2018). When a person is surviving its last stage of life, he/she is required to spend some loneliness and precious time with families and meeting relatives, peer, friends and other valuable people. During that ethical issues may observed such as lack of peace, mental support, health care (food, silence and physical care) and trouble to end life time are need to have serious concern. Other ethical issues dilemma such as withdrawing of an intervention, medical futility and physician assisted suicide.

Nurses are helping patients during their end life period may face some ethical situations such as information to the patient about further treatments or possibilities to save the life by health practice procedures (Aidoo & Rajapakse, 2018). Some of the common ethical problems related to end of life are as follows:

Broken communication: Patient always loses its interest and intention to communicate with known after decision over end of life. In context of child, communication mainly done by the parents, if in case child patient is unable to pursue effective decision over end of life care process. It is different in case of young person, where patient can take decision on his own after consent from family. Here, nurses mainly skip mutual consent with both patient and their family to take effective end of life decision (MarstonWool & Carter, 2018). During that time, it is difficult for nurses to communicate with patient regarding cares such as food, medicine, proper rest, sleep etc. In the medical health care, nurses are often trained with superior communication such as ethical interaction with patient, asking his/her favourite places & people etc. to convince patient for responding to the care process. They must be full verbal communication using proper words, feelings and flow of language to initiate care effectively.

Compromised patient autonomy: PSDA (patient self-discrimination act) is aimed to accelerate ability of health care and associated patients to communicate. It gives right to voice the patient to choose their end of life treatment wisely, but this stage of life contain critical circumstances. This is what currently happening in medical health care that patient autonomy has no importance, when they are in end of life time (Boucher & Downing, 2018). Nurses and doctors are necessary to be strong with mindset, create positivity and build moral values, while going to treat end of life patients. In case of child under age of 18 years, nurses mainly leaves decision making over patient’s native and family, patient thinks right away different and young person can take end of life treatment decision on its own. Hence, there is a critical gap between decision making between child and young person.

Shared decision making: During end of life treatment, some situations are occurred when patient needs to take decision about further treatment or want to spend rest of the days with peace. Here, ethical issue is lack of support by medical staff in decision making with patient, information about further treatment recovery and hope to recover (Fraser & Parslow, 2018). Childs are mainly immature by age, where important decisions are being taken by their patients. It is completely different in case of young person, where patient is independent to take end life treatment decision wisely.

Legal issues: Overruling Decisions 

The legal ordeal that comes with healthcare is that a proficient adult can make the decision of their life but it’s not the same for children under the age of 16. The healthcare law has divided the consent of decision making in the treatment via the age group, that is,

  1. Adult – over the age of 18,
  2. Young Person – betwixt age of 16-17,
  3. Children below the age of 16.

In a situation when an individual is below the age of 16 the decision is made for them by the medical authorities and parents but their own opinion takes the second stand. The person no matter of their age should be regarded and included in such an important decision as every person can accumulate their current health and what further decisions need to be made. In this aspect court plays an admissible role in whether siding with a healthcare specialist or guardian or with the person who has to live with the decision all their life.

According to the Family Law Reform Act (1969) and the Mental Capacity Act (2005), people referring to the age 16-17 have the strength and intellectual capacity to make the decision about their health taking into account their treatment, care as well as future scenario unless they lost have lost the ability to make that decision. It is specified in the Mental Act, 2005 that it is not crucial to have parental consent for the treatment of young people unless an individual has given that authority to the guardian, although the practice is appreciated.

However, a competent young person or an adult have the authority to make the decision of their health and treatment but the same choice is not given to the children. Involvement of children in the process of decision making of their treatment and health is a very complicated subject. 

Managing the Issues Using Defined Policies & Framework

In context with end of life decision making, both ethical and legal issues are highly severe. When the patient has limited life, nurses and doctors must have person oriented vision to treat and care person with source of their Nobel work (Jarvis & Fraser, 2017). There are necessary policies & frameworks which has potential to implement platform for patient to pursue independent end of life care decision making and takes immediate treatment, in case possible.

Every patient looks for treatment under consideration of ethical & legal perspectives and expect from nursing staff to share time to time information.

In context with end of life care, decision makers are both child under age 18 and young person. On one hand, child is mentally and psychologically not prepared to take treatment decision, while on another hand, young person is truly independent to pursue with treatment decision.

Unlike children, young person is presumed to have that mental capacity, where they can make treatment decisions with regards with treatment. For them, parental consent is not mandatory, but young people can undertake discussion with parental members. However, it is considered as good practice to involve parental members in treatment care decision making process. In case of child, decision of treatment is taken by parents or any family members, irrespective any awareness to the patients (Hiscock, Kuhn & Barclay, 2017). If treatment is available and if family members are not agreeing to take privilege, then heath care centre have strong option to go to court and legal authorities to file suit against family for carelessness under British medical association.

In case, if the patient is taking decision, whether child or young person, there must be clear and concise perspective of the health care staff to assist patient in his/her tough situation. There are certain challenges would occurs such as depression, intense emotions, loss of dignity, physical pain, hopelessness, and mundane tasks that need to be addressed at the end of life. All such situation can noticed under circumstances of both child and young patient.

There must be pure and polite environment for patients in the health care centre to take treatment with peace, stress less culture, flourishing environment and internal happiness, so that patient will feel good and relaxed to undertake end of life care treatment.

Equality and diversity is one of the necessary frameworks under ethical concern, where equality must be given to every survival patients and care should be preventive.

Family law reform act is a necessary framework to empower every end of life care patient to take his/her independent treatment decision without enforcement of any wrong decision. It is advised for parental family member to support patient with stable mind, peace, stepping partner and well wisher (Fahner, et. al., 2020). Also, this act enables judicial court to interfere, when there is no acceptance by family, if in case treatment is available.

Conclusion on Palliative Care and Life Limiting Conditions

From the above discussion, it is critically concluded that goal of end of life care is to control critical pain and other symptoms, so that the patient can comfortable as possible. End of life is considered as the last stage of the person’s life, when they are told by the doctors and other care staff with no chance of survival due to illness. There has to be channel and clear communication between parental member and nurses to do common welfare to the end of life patient. It is a serious advice for patient family members that, if in case treatment is available, they must accept and let patient to be decide over it. Also, certain challenges such as depression, intense emotions, loss of dignity, physical pain, hopelessness, and mundane are need to be taken seriously, because it is associated with patient and his/her life. Lastly, it is also concluded that common communication must be between medical staff and patients to undertake effective treatment program along with creating positive and well nourishing outcomes in context of medical terms.

References for Palliative Care and Life Limiting Conditions

Aidoo, E., & Rajapakse, D. (2018). End of life care for infants, children and young people with life-limiting conditions: planning and management: the NICE guideline 2016. Archives of Disease in Childhood-Education and Practice, 103(6), 296-299.

Books & Journals

Colón, Y., & Wladkowski, S. P. (2019). End‐of‐Life Care. Handbook of Health Social Work, 569-586.

Fahner, J. C., van Delden, J. J., & Kars, M. C. (2020). Survey of paediatricians caring for children with life‐limiting conditions found that they were involved in advance care planning. Acta Paediatrica, 109(5), 1011-1018.

Fraser, L. K., & Parslow, R. (2018). Children with life-limiting conditions in paediatric intensive care units: a national cohort, data linkage study. Archives of disease in childhood, 103(6), 540-547.

Fullerton, J. M., Totsika, V., Hain, R., & Hastings, R. P. (2017). Siblings of children with life‐limiting conditions: psychological adjustment and sibling relationships. Child: care, health and development, 43(3), 393-400.

Hiscock, A., Kuhn, I., & Barclay, S. (2017). Advance care discussions with young people affected by life-limiting neuromuscular diseases: a systematic literature review and narrative synthesis. Neuromuscular Disorders, 27(2), 115-119.

Jarvis, S., & Fraser, L. K. (2017). How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study. Archives of disease in childhood, 102(2), 131-138.

Loeffen, E. A., Kremer, L. C., & Verhagen, A. E. (2018). Individualised advance care planning in children with life-limiting conditions. Archives of Disease in Childhood, 103(5), 480-485.

Marston, J., Boucher, S., & Downing, J. (2018). International Children's Palliative Care Network: a global action network for children with life-limiting conditions. Journal of pain and symptom management, 55(2), S104-S111.

Wool, C., & Carter, B. S. (2018). Quality predictors of parental satisfaction after birth of infants with life‐limiting conditions. Acta Paediatrica, 107(2), 276-282.

Online

Providing Care and Comfort at the End of Life, 2017. [Online]. Available through: < https://www.nia.nih.gov/health/providing-comfort-end-life>

When end of life cares involves 2018. [Online]. Available through: < https://www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/>

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