The patient, Tyler Morton, was diagnosed with motor neuron disease (MND) specifically amyotrophic lateral sclerosis (ALS). ALS is a disease that affects the motor system and leads to muscle weakness and wasting. The disease spreads to different parts of the body including the respiratory muscles. A decline in respiratory muscles subsequently leads to death. The survivability of the disease is around 2 to 5 years after the onset (Masrori & Van Damme, 2020). Since there is no cure for ALS, palliative care is the most relevant form of intervention for patients with the condition (Oliver, 2019). This paper critiques the care provided to Tyler Morton by comparing the care provided to the patient with a Clinical Practice Guideline (CPG).
The care provided to Morton included pain management, anxiety management, infection treatment, respiratory interventions and treatment for digestive conditions. The care provided to the patient was dependent on the symptoms and conditions of the patient. The clinicians provided care to Tyler until he took his last breathe. The care provided to the patient can be analysed using the CPG on End of Life Care. This CPG consists of identifying key transitions in the end of life care, identifying patients in the final days of life, making decisions on treatment limitation and proper communication (Australian Catholic University, n.d.).
Identifying Key Transitions and Patient Final Days
The key areas of palliative care based on the CPG on End of Life Care include recognising key transitions in the end of life care and identifying patients in the final days of life. Palliative care should transition based on the different phases of patient illness to ensure that the care meets the needs of the patient. The patient’s risk of dying should also be identified early on in order to initiate care which enhances the patient’s end of life. Identifying the patients who are about to die is essential in enabling the patient to consider reconciling important relationships, reflect on life and sort legal issues pertaining death and inheritance. It is also important in enabling the family to discuss the treatment and death decisions which need to be made (Australian Catholic University, n.d.).
The caregivers in Morton’s case constantly analysed his condition however they failed to respond to the changes in his condition. Morton’s condition continued to deteriorate as can be seen with the increase in infections and difficulties in feeding and breathing (Australian Catholic University, n.d.). The clinicians were required to respond to these changes and initiate the required end of life care. Standard 1 of the National Palliative Care Standards requires the clinicians to assess the needs of the patient (Palliative Care Australia, n.d.). Clinicians need to assess the patient and determine whether the client is dying or not in order to initiate appropriate care (Taylor et al., 2017).
The CPG on end of life care recommends that the patients should be allowed to reconcile important relationships in their life during their final stages (Australian Catholic University, n.d.). Morton also wished to have his family present in the final stages of his life. The lack of effective response to the changes in the patient’s condition made it impossible for his brothers and mother to arrive before his death. It also made it impossible for the patient to be visited by a priest or minister at the end of his life as he had expressed in the advanced care directive.
Clinicians should know about the condition they treat
Decisions on Treatment limitation
Another important aspect of palliative care is the decisions on treatment limitation. Treatment during the end of life should not focus on curing the patient therefore certain treatments should be withdrawn. Clinicians should make decisions on avoiding non-beneficial treatments. They should also hold discussions with the patient and family on the reason why the treatments should not be offered. The patient should also be allowed to provide directions on what should be done in certain circumstances. Instead of unnecessary treatments, the clinicians should focus on interventions relevant to patient needs such as pain and discomfort relief, personal hygiene and measures to maintain dignity (Australian Catholic University, n.d.).
The clinicians in Morton’s case followed the guideline on decisions on treatment limitations. They frequently evaluated the patient and informed him and his family on the interventions that they would use to manage his condition. They also instated care relevant to the needs of the patient such as pain management. Tyler was also given freedom to participate in the decision making. He made decisions on the use of CPAP where he told the clinicians about the times that he is comfortable with the device. He also stated that he did not wish to receive CPR, artificial ventilation through a breathing machine and a tracheostomy. The clinicians respected his input and followed his directions.
The National Safety and Quality Health Service (NSQHS) Standards on partnering with consumers which requires leaders of healthcare organisations to create systems which enable the collaboration with consumers on planning, evaluation, delivery and design of care (Australian Commission on Safety and Quality in Health Care, 2019).
Proper communication is also recommended in the CPG on End of Life Care. Proper communication should take place between the patient and the treating team. The communication should be honest, clear, frequent and timely. The communication should also be done to allow the patient to participate in decision making. The patient should receive crucial information about his condition and the treatments that should be done. The clinicians should also communicate with the patient’s family in an honest, clear and timely manner. The communication should also enable the family to participate in decision making however, the clinicians should ensure that the patient’s decisions are not overruled. Family meetings with hospital staff should also be organised in order to ensure consistency of information provided to the patients and family. The communication should also enable the family to come to terms with the information provided. More family meetings may be needed to clarify any issues (Australian Catholic University, n.d.).
The clinicians responsible for caring for Tyler followed the CPG recommendation on proper communication. They communicated effectively with the patient and informed him of changes in his conditions. They also gave the patient their recommendations and allowed the patient to make decisions. This can be seen when Tyler needed IV antibiotics after developing another peg site infection. The registered nurse and medical officer providing care to the patient had recommended the admission of Tyler into the hospital. However after discussions they decided that the Community Palliative Care Team would provide care to Tyler at his home. The clinicians also communicated to Tyler’s family about his condition. This can be seen when he made a request to be moved to the hospice. The registered nurse discussed his condition and his decision with Catherine. The registered nurse also held extensive discussions with Tyler and Catherine after Tyler’s condition had worsened. The nurse further called Tyler’s mother so that she could come and visit him at the hospice. Despite the efforts made to communicate with Tyler and his family, the communication was not effective thus leading to the death of Tyler without fulfilling his wishes of going to the hospice. This delay was caused by the disagreement between Catherine and Tyler’s mother. The registered nurse was not able to mediate the differences between the two or initiate a meeting for all the family members. The nurse further failed to immediately implement Tyler’s wish to be moved to a hospice before he died. Moreover, Tyler’s wife did not seem to understand the severity of her husband’s condition.
The National Safety and Quality Health Service (NSQHS) Standards Leaders of health services organisations should set up systems which ensure proper communication between the clinicians and between the patients and clinicians (Australian Commission on Safety and Quality in Health Care, 2019).
Proper communication follows the nurse practice standard of engaging in therapeutic and professional relationships (Nursing and Midwifery Board APHRA, 2017).
Australian Catholic University. (n.d.). End of Life Care.
Australian Commission on Safety and Quality in Health Care. (2019). The NSQHS Standards. https://www.safetyandquality.gov.au/standards/nsqhs-standards
Masrori, P., & Van Damme, P. (2020). Amyotrophic lateral sclerosis: a clinical review. European Journal of Neurology, 27(10), 1918-1929.
Nursing and Midwifery Board APHRA. (2017). Registered nurse standards for practice. https://www.nursingmidwiferyboard.gov.au/Codes-Guidelines-Statements/Professional- standards/registered-nurse-standards-for-practice.aspx
Oliver, D. J. (2019). Palliative care in motor neurone disease: where are we now?. Palliative Care: Research and Treatment, 12, 1178224218813914.
Palliative Care Australia. (n.d.). National Palliative Care Standards. https://palliativecare.org.au/standards
Taylor, P., Dowding, D., & Johnson, M. (2017). Clinical decision making in the recognition of dying: A qualitative interview study. BMC Palliative Care, 16(1), 1-11.