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NMIH306 | End of Life Pathways for Patients With End Stage Dementia

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Explain and analyse End of Life Pathways (EOLP) for older people with end stage dementia living in a residential aged care facilities (RACF) in Australia.

Your discussion should include;

- Care and treatment plans in relation to person centred care.

- Critical analysis of any ethical issues identified.

- The role of the family and carers in decision making and potential conflicts that may occur.

- Use current research to support an argument for how palliative care might be improved for all people involved.

- What resources are available to support nurses with EOLP in RACF?


End of life pathways for patients with end stage dementia

Dementia is a brain disorder that leads to decline in mental abilities.  It involves brain nerve cells damaged and it causes both cognitive and psychological changes in a person. it is a group of symptoms that are characterized by memory loss, inability to think and make decisions, difficulty in communication and reduced socializing skills. It also leads to symptoms such as anxiety, depression, moods changes and frequent hallucinations. The disorder may be attributed to by reactions to medications, deficiency in vitamin B1, B6 and B12, immune disorders, infections, brain tumors, metabolic disorders, subdural hematomas and insufficient supply of the blood to the brain or other organs in the body. The major risk factors to development of this disorder are; age, family history, cognitive impairment, behavior such as alcoholism and smoking, cardiovascular diseases and diabetes. the disorder leads to development of complications such as malnutrition due to reduced ability to feed well, in ability to perform personal simple tasks, inability to ensure personal safety and death. Dementia is grouped in stages depending with the severity of nerve damage and the observable symptoms. At the end stage, there is severe damage of the brain. Hence, the patients require total support and care. At this stage, a person loses the ability to talk, doing simple tasks such as feeding themselves, turning on the bed or walking. Therefore, there is necessity for high level of care and support. Most of the old people in Australia are cared for in residential aged care facilities (RACF) for special care and support. End of life pathways are used to manage patients for the terminal illness.

End of life pathways (EDLP)

End of life pathways are guidelines and plans that helps the care team to provide quality care to the family and the patient at his terminal stage. That is, they are models designed to improve care to patients at the last days of their lives (Chan and Webster 2013). The major aim of the pathways is to ensure that appropriate services and care are provided to a patient at his last days of life by professional health team to promote and support good death (watts 2012, p. 29). As according to Costantini, Alquati and Di Leo (2014), there is poor evidence in dissemination of end of life pathways in hospitals and hospice in many countries (p. 399). In their research they found out that the pathways reduce the gap between the hospital and the hospices. This multidisciplinary care plans consist of essential steps that guides in managing patients with specific clinical problems (Chan and Webster 2010).

For old people with end stage dementia living in residential aged care facilities in Australia, the End of life pathway has been commonly used. At this advanced stage of dementia, the pathway emphasizes in shifting from aggressive medical treatment to palliative care (Kumar and Kuriakose 2013, p. 129). This is because the patient worsens daily in that there is reduced ability to feed orally, inability to move or turn, fluctuating breathing patterns and the patients may be semiconscious.  At this state it is almost impossible for the nursing staff to assess symptoms such as pain and hence makes the medical management impossible. Hence, a person-centered care becomes necessary. End of life care can be provided either at home, residential aged care facilities or hospitals. Hospitalization becomes necessary when a patient gets complications related to dementia. For example, a dementia patient may develop pneumonia or difficulty in breathing that calls for more specialized doctors.

The end of life pathwaysis step wise guideline that involves six steps to achieve the goal of promoting good death to a patient and enabling quick relieve to the family during the care and death of the patient. In the case of a patient at the end stage of dementia, the following steps are applied.

Step 1 Discussions as the end of life approaches

At the end stage the patient is not in a position to communicate. Therefore, the doctor analyses and determines whether the patient is in the last days of their lives.  The signs and symptoms of dying are analyzed which include; in ability to swallow food and drugs, rapid and irreversible weight loss, and increased need for intervention. At this point the family is involved and communication is made to them about their dying patient. As according to Sinuff et al. (2015), a good communication process of the healthcare team and the family is significant in making decisions pertaining to the patient and developing the care plan for the patient (p.1075).

Step 2 Assessment, care planning and review

At this point, a person-centered care is given. The patient’s needs, wish and preferences and the family needs are assessed by the professional health team who are offering palliative care. Hence the healthcare team should therefore have adequate knowledge and skills to assess the needs. In palliative care the nurses need to have knowledge on the different aspects of care they give to the patients (Iranmanesh, Razban, Tirgari and Zahra 2014, p. 208). The care plan is then developed after acquiring enough information of the needs, possibility of advanced care planning, whether there is any objection to treatment, the patient’s spirituality and culture and incase of any spiritual need it should be identified the action that can be taken to help the patient. All this information is including in the care plan for future reference.

Ethical issues identified during the assessment

During the end of life care process, it may be difficult for the doctors, the nurses and the family to make decisions on the procedure or measures to take in the care giving to the patient (Hinshaw 2008, p. 123). Therefore, it is significant to consider the ethics of the patient and the family as to provide satisfactory services and comfort to the dying patient. Most commonly considered ethical issues include;

  1. justice that is in the process of providing care the patient should receive the service entitled for his condition without discrimination.
  2. Respect for autonomy that is the patient or the family if the patient is unconscious or have cognitive impairment has a right to decide on the action to be taken on the patient at a given time. However, the decision should be logical. For instance, in matters relating to ones spirituality, cultured and religion
  3. Nonmaleficence that is during the service or care delivery process the care giver should impose less or no pain to the patient
  4. Beneficence that is during the end of life care, the nurses and other care givers intension should be doing good to the patient.

Step 3 Coordination of care

From the holistic assessment done the relevant services required to promote good death are coordinated. This is to ensure that the patient’s and family’s wish and needs are met. For instance, coordination for transport services, hospice linking if necessary, out-of-hour services and services required in providing a satisfying and desired death. As stated by Cornally et al. (2015), the “let me decide” approach in the advanced care planning provided led to a more open and positive care environment (p.55). information regarding any cultural practice that is related to the management of dementia is obtained to ensure that all the wishes are met and nothing that might be against the patients wish is implemented. This creates a sense of comfort for both the patient and the family. Information about symptoms management and monitoring is given to the family. The people responsible for the care services are recorded for easy coordination to facilitate transparency and easy implementation of care

Step 4 Delivery of high quality services in different setting

In the delivery of services to the patient at the end stage of dementia, a qualified professional is required to ensure that he notices slight changes and give the quality care to the patient. Most palliative care health professional are well trained though more research is necessary to increase knowledge in this field Dixon, Matosevic and Knapp 2015, p. 883). The patient receives or is given services with respect and dignity. The family has the right to acquire quality information concerning the patient, advice on how to take care of the patient if at home and spiritual care whenever necessary at any time

Step 5 Care in the last days of life

When the patient enters the dying phase nurses and other healthcare providers provide the necessary care services to the patient. For the patient, the care is shifted from medical treatment to palliative care. Pain management here is critical so as to ensure that comfort is provided as much as possible. Change from medication to palliative is should be well explained to the family for them to support in the decision making that might be required in this step. As stated by Caswell, Pollock, Harwood and Porock (2015), mutual understanding and communication between the healthcare providers and the carers enhance the carer’s experience of the end of life of their relative.

Step 6 Care after death

Death of a loved one can lead to development of stress and depression (Fumis, Ranzani, Martins and Schettino 2015, p.35). therefore, the care pathway does not stop at death. The responsible nurses are to follow up on the family and find out on their progress. At this step, the health care provide should ensure there is a quick certification of the death, the after-death wishes are implemented and the body of the deceased taken to mortuary. This ensures the family feel appreciated and valued. This helps to grief and to recover from the loss quickly.

Generally, the end of life care is focused at managing the symptoms of the dementia and those of the related complications, provide comfort to the patient by providing quality care and information to the patient and the family. It also focusses at educating both the healthcare providers and the family on the appropriate services to offer to a patient at his last days of also plays a big role in promoting quick recovery from the loss through follow up and further counselling if necessary.

The role of the family in decision making

Family involvement in decision making in the end of life care is essential to facilitate smooth running of the care process (Parsons et al.2014, p,283). However, this is a factor that highly influence physician’s decisions on the treatment to be administered to the patient. At end stage of dementia, the patient is usually in a state that cannot make a personal decision or suggest on the action to be taken. Therefore, the family play a significant role in providing the required information (Cardona-Morrell et al. 2015, p. 430). For example, in the assessment, care planning and review stage in the end of life pathway, their information is necessary for effective care planning. Information on wishes, preferences of service and choice of place of treatment, spiritual and cultural believes are fundamental during this process. The family also help to determine slight changes occurring in a patient for instance signs of anxiety, weight loss and pain. This help the nurses and the doctors in deciding the right treatment from the history given. As stated by Huang et al. (2015) family involvement in decision making helps to develop the stage of intervention in end of life care process (p.135).

Potential conflicts that may occur when the family is involved in the decision making may be poor communication due two physician’s barrier can lead to lack of credibility of the services being provided (Visser, Deliens and Houtekier 2014, p. 604). This may create a trust gap that can hinder proper management of the patient. There might be spiritual or cultural differences between the nurses and the family which may affect the reaction of the nurses to the family. This may create a negative impression that may affect the treatment procedure for the patient (Moore 2104). The family may at a time give suggestions on patient’s treatment which may be contradicting with the guidelines. This may lead to conflict if they are informed why their suggestion were not appreciated. Therefore, proper communication is essential to avoid conflicts that may arise in the end f life care process (Kon, Davidson, Morrison, Danis and White 2016, p. 188)

How palliative care can be improved for all people involved

As suggested by Fox et al. (2016), palliative care is core in providing comfort for the dying patient. Therefore, measures such as adapting adapting more integrated model of care, educating the health care workers, patients and carerswill go a long way in improving the palliative care given to patients to day (p. 15). As researchers suggested, the quality of services offered in hospitals are suboptimal. Iliffe et al. (2016) suggest that quality indicators and audits should be introduced to monitor the quality of palliative care services offered in hospitals and hospices. Though the knowledge of this field of palliative care is minimal, further research should be conducted to give more information on symptoms assessment in patients at the terminal stage (Xie, Gelfman, Horton and Goldstein 2017, p.199).

Resources available to support nurses with EOLP in RACF

Nurses have training guides that guides them on how to provide palliative care. During their training, the guide provide knowledge relevant for their services. there are other guideline developed to support nurses in their work. National End of Life Care Program that gives detail on the six steps involved in end of life care acts as a resource for the nurses


Dementia is a disorder that affects the brain nerves cell. It causes cognitive and psychological changes leading to reduced memory, inability to talk, walk or make decision. The end of life pathway is a guideline developed to help the health care providers to provide quality services to patients with dementia and other clinical problems. It is a step wise process that involve six stages to achieve the goal of providing comfort and good death to patients. it involves discussion as the end of life approaches, assessment, care planning and review, coordination of care, delivery of high quality care in different settings, care in the last days of life and care after death. This provides a good death to the patient. Relieve and quick recovery from the loss to the family. The family plays a major role in making decision during the end of life care to their patient. This promotes satisfactory outcome from the pathway. However, certain conflicts may arise due to involvement of the family in decision making which can negative affect the quality of services offered and consequently the outcome of the palliative care. For better performance of the palliative care several measures should be taken. The healthcare providers, patients and the carers should be educated about the palliative care, quality indicators and audits should be introduced to monitor the standard of the care given in the facilities and further research should be conducted to provide more knowledge in this field of palliative care. Currently, there are guidelines that provides nurses on information on how to provide care to patients at the last days of their lives. Hence more resources are required to enhance their services and provide good death to the dying patients.


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Caswell, G., Pollock, K., Harwood, R. and Porock, D., 2015. Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study. BMC palliative care, 14(1), p.35.

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Costantini, M., Alquati, S. and Di Leo, S., 2014. End-of-life care: pathways and evidence. Current opinion in supportive and palliative care, 8(4), pp.399-404.

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