Bob is an electrician aged 64 years, diagnosed with motor neuron disease (MND). Bob has no medical history and was fit and healthy before diagnosis. As Bob's illness progresses, he experiences extreme weakness in his limbs but can move around somehow. To assess what can be done to improve his physical and emotional health Bob was referred to a physiotherapist and occupational therapist. The physiotherapist finds that Bob is having problems with speech and is becoming distressed with his loss in independence. He considers advanced treatment preparation for the progression of his chronic illness.
Advance care planning (ACP) is the term that describes the dialogue about their treatment and care needs and goals between patients, their families and carers, and those who look after them. ACP is usually done in chronic illnesses like cancer, dementia, MND, etc. MND is a group of rare neurodegenerative diseases that affect exclusively the motor neurons, the cells that regulate the body's voluntary muscles (Murray & Butow, 2016). It affects patients’ muscles primarily, causing movement-related symptoms. In such conditions ACP helps patients to express and record their desires for future care and treatment, and then also nominate someone as an advisor or proxy, therefore making it possible that such desires will be recognized and remembered at the end of their lives. The key goal is to explain the desires, needs, and expectations of the people and to provide treatment to satisfy those needs.
MND is an untreatable progressive condition, defined by constant neuromuscular functional degradation. This disorder progresses with time and the health conditions keep on getting worse. Prompt start of ACP encourages patients to take part in future care choices. Advanced care planning help patients get a sense of security and 'satisfaction' and promote substantial family discussion and decision. The pace and layout of its presentation must therefore be compassionately addressed. Methods and techniques should be tested and applied for increasing the effectiveness of ACP for motor neuron disease.
ACP means that patients are treated in a way that meets their standards. It also helps to provide the family with input and the responsibility of their decision-making about how they are achieving those goals. ACP will lay the groundwork for clinicians by developing a process they can use to guide decision-making, taking into account the patient's priorities, interests and principles, and their care preferences. Others have also introduced ACP to relieve moral distress among healthcare professionals. In the sense of a motor neuron disorder (e.g., feelings of control/relief, and rejection of unnecessary treatments), major benefits can be associated with ACP. An advance care plan is not legally binding – it should be as detailed as the individual thinks they need to be and represent their goals, so it may include, for example, who should take care of a pet should they are unable to do so and die. This is very necessary to predict potential needs as the disease progresses very quickly, but one must understand that handling the disease always takes place one day at a time. Changes to the physical health and mental and emotional well-being of the person occur so quickly that they can alter individual needs within a day (Lin et al., 2109).
Advanced neurological disorders, including MND, are typically life-limiting disorders that could devastate patients, families, and caregivers. While medical technology, such as non-invasive ventilation, and enteral feeding can increase patients' life expectancies, their use raises significant ethical questions about the quality of life of patients (Diestre Ortín et al., 2013). End-of-life decision-making concerning the advanced neurological disease can be complex and difficult for patients, their families, and health care professionals as it requires a variety of age groups of patients with the disease. In this case, advance care planning, which may promote consideration of patient choice in some form of advance directive (AD) before physical or cognitive impairment, may help with documentation to enhance patient recognition of the disease. Ideally, ACP should occur before beginning life-sustaining procedures, such as nutritional assistance or non-invasive ventilation, and consideration should be given to the conditions in which patients should desire such withdrawals. Circumstances should also be carefully considered in which patients receiving nutritional or ventilator assistance may want these removed at any time. ADs are intended to encourage patients to engage in crucial life-sustaining decisions, taking patient dignity and autonomy against the end of life into consideration. Although some general practiceoners were concerned that this could cause distress, the majority thought it was necessary to increase ACP, particularly as readiness for potential emergencies (Sharp et al., 2018). Other health professionals suggested that service gaps made it impossible to meet the wishes of the patient, and risked raising unreasonable expectations of patients. Certain obstacles found included confusion about the prognosis and challenges maintaining that the wishes of the patients were met. The advancement in the medical field has culminated in clinicians' ability to intervene and preserve what was historically possible in life earlier, but the quality of life resulting from the treatments is not guaranteed (Combes et al., 2019). The religious views and principles of various communities surrounding death and dying can be helpful in training health practitioners for ACP with patients with various religions. It is also equally critical is avoidance of theories which opposes the ACP. Community-based projects, services, and community environments are an avenue that could be used to raise awareness of ACP within groups of religious followers (Pereira-Salgado et al., 2017).
Nevertheless, instructional guidelines and advance care plans are gradually being used in Australia, based on principles (Rhee & Zwar, 2011). On 12 March 2018, the Medical Treatment Planning and Decisions (MTPD) Act entered into force. The MTPD Act is part of a broader move towards powering and enabling the people to make choices of their own about healthcare (Victoria State Government, 2018). ACP will lay the groundwork for clinicians by developing a process they can use to guide decision-making, taking into account the patient's priorities, interests, and principles and their care preference. During the ACP process, patients are required to complete AD recording particular medical treatment preferences (e.g., living will) and appoint a health-care proxy (e.g., long-lasting health-care attorney or health-care proxy) if they are unable to make their own decisions (Victoria State Government, 2018). The advance treatment directives include patient medical information and the patient's present state of health. When the patient is suffering from mental illness, a declaration of progress under the mental health act must be completed. Secondly, the Values Directive should be included which must express the beliefs and desires for the medical care to the medical treatment decision-maker and health practitioner. The Values Directive is signed in front of experts who certify that the patient can implement and willingly accept a Values Directive (Victoria State Government, 2018).
The patient must nominate a decision-maker for medical care using the decision-makers Appointment form for medical treatment. If the patient is a registered donor of organs and tissues or are willing to be considered for donation of organs and tissues, then they have to consider additional documentation while completing your 'Advance Care Directive.' Thirdly, once the patient knows the medical care wanted or not wanted in the future, in that case, the patient must fulfil an instructional order, as this is a legally binding document. Those decisions are geared at the health professionals, not the decision-maker in the area of medical care. The patient also needs to sign in front of two witnesses to make a legitimate 'Advance care order'. One must be a licensed (legal) medical practitioner. The witness should not be anyone who you have named as the decision-maker for the patient medical care (Victoria State Government, 2018).
The ACP document is believed to be beneficial, promoting flexibility and empathy for patients, encouraging difficult decision-making, and strengthening contact between families. Nonetheless, the 'readiness' of individuals to acknowledge the invasion of death would affect take-up. Appropriate timing for beginning advance care planning will rely on the case-based needs of both the clinical and the patient (Zwakman et al., 2018). Advance care planning will help patients get a sense of control and 'material' and encourage meaningful interaction with their families. The pace and style of its presentation must therefore be sensitively addressed. Over time the shift in medical care will change. For this reason, every two years, or when the health or personal condition changes, it is suggested that the patient revisit 'Advance care order (Risk et al., 2019. In some cases, the ACP is started when the patient could no longer remember family/friends. For a few cases, the ACP will be initiated if the patient goes on a ventilator or are unable to get out of bed, can no longer support oneself or have no control over my bladder and intestines (Risk et al., 2019).
Advance care planning is important to optimizing care for end-of-life people and allowing improved preparation and care delivery, helping them to live well enough and die well in the location and way they want. In chronic illness conditions like MND, ACP helps patients to express and record their desires for future care and treatment. ACP should occur before beginning life-sustaining procedures, such as nutritional assistance or non-invasive ventilation, and consideration should be given to the conditions in which patients should desire such withdrawals. ACP requires specific documentation, so the pace and style of its presentation must, therefore, be sensitively addressed.
Combes, S., Nicholson, C. J., Gillett, K., & Norton, C. (2019). Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model. Palliative Medicine, 33(7), 743–756. https://doi.org/10.1177/0269216319845804
Diestre Ortín, G., González Sequero, V., Collell Domènech, N., Pérez López, F., & Hernando Robles, P. (2013). Planificación anticipada de decisiones en las enfermedades crónicas avanzadas [Advance care planning and severe chronic diseases]. Revista espanola de geriatria y gerontologia, 48(5), 228–231. https://doi.org/10.1016/j.regg.2013.01.001
Lin, C. P., Evans, C. J., Koffman, J., Armes, J., Murtagh, F. E. M., & Harding, R. (2019). The conceptual models and mechanisms of action that underpin advance care planning for cancer patients: A systematic review of randomised controlled trials. Palliat Med. 33(1):5-23. https://doi:10.1177/0269216318809582
Murray, L., & Butow, P. N. (2016). Advance care planning in motor neuron disease: A systematic review. Palliative & Supportive Care, 14(4), 411–432. https://doi.org/10.1017/S1478951515001066
Pereira-Salgado, A., Mader, P., O'Callaghan, C., Boyd, L., & Staples, M. (2017). Religious leaders' perceptions of advance care planning: a secondary analysis of interviews with Buddhist, Christian, Hindu, Islamic, Jewish, Sikh and Bahá'í leaders. BMC Palliative Care, 16(1), 79. https://doi.org/10.1186/s12904-017-0239-3
Retrieved from: https://www2.health.vic.gov.au/mental-health/practice-and-service-quality/medical-treatment-planning-decisions-act#:~:text=The%20Medical%20Treatment%20Planning%20and,make%20their%20own%20treatment%20decisions.
Rhee, J. J., & Zwar, N. A. (2011). How is advance care planning conceptualised in Australia? Findings from key informant interviews. Australian Health Review: A Publication of the Australian Hospital Association, 35(2), 197–203. https://doi.org/10.1071/AH10883
Risk, J., Mohammadi, L., Rhee, J., Walters, L., & Ward, P. R. (2019). Barriers, enablers and initiatives for uptake of advance care planning in general practice: A systematic review and critical interpretive synthesis. BMJ Open, 9(9), e030275. https://doi.org/10.1136/bmjopen-2019-030275
Sharp, T., Malyon, A., & Barclay, S. (2018). GPs' perceptions of advance care planning with frail and older people: A qualitative study. The British Journal of General Practice: The journal of the Royal College of General Practitioners, 68(666), e44–e53. https://doi.org/10.3399/bjgp17X694145
Victoria State Government. (2018). Medical Treatment Planning and Decisions Act
Zwakman, M., Jabbarian, L. J., van Delden, J., van der Heide, A., Korfage, I. J., Pollock, K., Rietjens, J., Seymour, J., & Kars, M. C. (2018). Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness. Palliative Medicine, 32(8), 1305–1321. https://doi.org/10.1177/0269216318784474
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