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Palliative and end-of-life care with an indigenous-peoples perspective

Introduction

The Australian indigenous communities – the aborigines and Torres Strait – present a rather different aspect to health care because of their strong attachment to their culture. In addition to their divergent culture, these communities have a negative perception of the western oriented health care system, were health centers are referred to as the “place where people go to die” (McGrath & Phillips, 2008). Nevertheless, considering the benefits of palliative health care especially in the end-of-life phase, it is important to develop a health care program that integrates cultural aspects and modern health care strategies. This essay will therefore seek to establish cultural aspects pertaining to an effective health care delivery model for the indigenous people through literature review, deduce why indigenous people want to spend the last days of their life in home, and establish how health care programs can be integrated with the traditional way of life for the aborigines and Torres strait islander communities.

Cultural aspects to health care system

The culture of the aborigines and the Torres Strait islander people is a combination of spiritual and material things that are practiced through rituals that characterize almost every aspect of their lifestyle (Taylor et al. 2009). Their culture dictates their economics, their politics, and social set up and practices. In the social phase of their life are sickness, health care, and death, which are the major issues in this essay. The cultural believes of these indigenous communities regarding diseases and heath care are completely different from the mainstream health care system. The implication of this spiritually holistic way of life is among other, health care professional do experience difficulties in providing care to aboriginal people.

Indigenous culture does not recognize professional health officers and they rely only on bush medicine and traditional healers. Three of the major cultural aspects to mainstream health care delivery include;

  1. Cause of disease

As stated by McGrath & Phillips (2008), aborigines and Torres Strait islander people hold very different opinions on the cause of diseases. While the mainstream understanding is that diseases are caused by microorganism, the indigenous belief is diseases are caused by evils powers for the good people and sometimes, it is a punishment to those who have wronged the gods in a way or another (van der Riet et al, 2011). Among the indigenous communities, especially the old generation, diseases are perceived to be a result of exposure with metaphysical powers, removal from their homeland due to such activities like forced displacement, due to personal shortcomings, or disregard of a customary exercise.

Based on the above causal belief, treatment will also be sought in a similar dimension. some of the treatment/healing believes include the perpetrator saying “sorry” to the victim, seeking forgiveness by the gods through sacrifices, etc. The treatment or healing strategy to be adopted will mainly depend on the type of disease and what is thought to have caused the problem (McGrath, 2007). The decision of the thought-right remedy is made by the traditional healer after consultation with the gods. In cases where medication maybe required, then a concoction of bush herbs is the prescription.

Due to this retrogressive belief, the majority of diseases among indigenous people are diagnosed at the late diseases. For example, in the case of cancer and other non-malignant diseases, the disease will be made known to the health care officer when all other traditional remedies have proven futile making it impossible to treat or even manage the situation effectively. However, with the continuing penetration of mainstream education and other support systems like education, the situation is changing especially among the younger generations.

  1. Health worker communication

Heath related issues are considered to be a personal and by extension, a families affair. As a result of this, communication to an “outsider” about family issues is a major challenge. Because healthcare officers are considered to be outsiders, indigenous patients will simply stay away because they can’t complain (van der Riet et al, 2011). The situation becomes more complex when the health care is from the non-indigenous communities. Indigenous patients are more comfortable when the healthcare officer is a fellow indigenous.

At a personal level, an individual can be simply a poor communicator. This will be experienced through a patient not answering cross examination questions. The language barrier between non-indigenous and the indigenous is a contribution to this, but because healthcare officers in aboriginal and Torres strait Islander regions and health centers have learned the local dialect, the problem can only be attributed to personality issues. According to McGrath (2006b), the best way to promote, induce, and sustain a conversation or at least response to cross examination questions is by promoting a friendly environment.

In addition, understanding aboriginal and Torres Strait Islanders culture is an important requirement. For example, it is hard for a female healthcare officer to communicate with male indigenous patients and vice versa. The communities have distinct boundaries for men’s issues and women issues. For example, it is virtually impossible for an indigenous male suffering from prostate cancer to share the condition or even open up to a female healthcare officer. To tackle this problem, gender should be addresses with male healthcare officer serving men and likewise for female healthcare officers and female patients.

  1. Palliative care

After all intervention strategies have been tried and fail to cure the person, it is considered to be the decisions of the spirits for them to die. Nevertheless, when palliative care is being administered by a health worker, then other traditional perspectives come into play.

First, treatments and other palliative practices that cause pain are perceived as interference to the will of the spirits (Fried, 2000). Based on this perception, it is highly likely that the patient, or those around him/her, will ask for termination of the care program and adoption of culturally “safe” pain management practices.

Second, in case of death and it is determined to be a culturally “immature” death, then an investigation is done to uncover the cause of death. In such cases, the health worker can be implicated with the punishment being banishment from the society or being speared (Taylor et al, 2009). The use of injections in palliative care can be taken for poisoning.

Third, it is common for patients with terminal illnesses to ask to be taken home when death approaches (McGrath et al, 2005). As a result, those undergoing palliative care in hospitals might ask to be discharged to die in their homeland – the land of their birth.

Dying and the need to die at home (Why Pam wants to die at home)

According to McGrath & Phillips (2008), death among the aboriginal and Torres Strait islander communities are marked with very important ceremonies. These ceremonies take precedence of all other events and activities in the community and they require that all the relevant people be in attendance. Just as those bereaved make effort to abandon everything else and be in the ceremony, those in their end-of-life phase will want to die in the presence of their loved one. As stated by Taylor et al (2009), dying in the home environment is considered to be comforting and peaceful.

In the majority of indigenous cultures, death is considered to be a natural event – unless there are suspicions arising. For the natural death, then a “good death” is considered important. Among the definitions of “good death” one requires that the individual meet death with composure and dignity. Being at home is considered to be one of the elements making up dignity and composure rather than being in a hospital in the big city (Abernethy et al, 2007).

Indigenous people have great value for the family. It is one of the major decision making organs in a person’s life. It is considered to be a symbol of trust and peace (McGrath, 2006b). Given this strong attachment to the family and what it stands for in the society, it is where anyone would want to be during the most important moments of their life, end-of-life being one of them. Because Pam is suffering from a terminal illness, it is expected that all she wants is peace of mind and reassurance as she spends her last moments on earth.

Preparing for effective palliative care

Once a patient is out of the hospital and away from a qualified health worker who can monitor the palliative care program, it becomes hard in ensuring that the patient observes the set palliative care program. As noted by To & Boughey (2010), without effective follow up program by the health workers or an educated and concerned family member, these patients will abandon the convectional health care and opt for traditional remedies, which in the case of Pam, cannot remedy cancer. Preparing for home-based palliative care is a process that involves the family care giver, the patient, and the health worker.

The first consideration for palliative care is ensuring that the family has the requirements to support home based palliative care. The major requirement is a person who is available and understands the importance of following the care program effectively and as set (Thompson et al, 2006). The care giver should indicate how much time they have. For the first days in home-base palliative care, the patient might not require extensive care, but as time goes by and the end-of-life day nears, the level of care and time required to tend for the patient increases.

The care giver should then be varnished with the all the care information required. This is detailed information of the various medications and how they should be administered, physical exercises and the required frequency, and dietary requirements to observe (Agnew et al, 2010). To be able to understand and follow these details, it is required that the family should have a knowledgeable care giver. This can be an educated family member who understands the important of the palliative care program, or a private care giver hired to look after the patient.

For the case of a family member without prior experience in home based palliative care, it would be beneficial for him/her to receive a short training to prepare them for the task ahead. According to Broadbent & Mc Kenzie, (2006), care giving is not all about the time invested; it is also psychologically and emotionally engaging. This is increasingly difficult if only one member of the family is involved in the care giving program. Moreover, it is disturbing to see a loved one in the patient-condition especially for at the near-death stage. It is therefore necessary to ensure that the care giver is in a care-givers group for counseling purposes.

To ensure that all the care giving procedures are followed to the latter, it is the responsibility of the doctor or the hospital to maintain a consistence monitoring program. This is necessary for ensuring that the care program is effective in meeting the patient requirements in managing the disease and minimizing pain. The monitoring visits will also form an important avenue to make alteration to the program based on the condition of the patient. In cases where the discharging hospital is located far from the patient local area, it is the responsibility of the doctor or the hospital to ensure that the patient is incorporated into one of the many rural care giver programs.

Conclusion

The aboriginal and Torres Strait islander communities of Australia present a rather challenging scenario towards the mainstream healthcare system. Their culture, which is holistically spiritual, is characterized with rituals and highly retrogressive believes concerning diseases, treatment, and death. Aborigines and the Torres strait islanders hold very divergent believes for example, they belief that disease are caused by the spirits and the type of diseases contracted depends on the particular exposure to the metaphysical force, they hold divergent communication structures between the health worker and the patient, and they view palliative care is a will for the good.

For the terminally ill, they consider it the will of the spirits for them to die. The primary reason why Pam would want to be at home for end-of-life is to be around her family members, in the peaceful and comforting home environment, and die a “good death”. Before discharge, a proper program is necessary to ensure seamless change for the patient. This involves the care giver, the patient, and the doctor involved. The discharge information should indicate the right medication and their administration schedule, physical exercise program, and the right diet.

References

Abernethy, A., Hanson, L.C., Main, D.S. & Kutner, J.S. (2007). Palliative care clinical research networks, a requirement for evidence-based palliative care: time for coordinated action, Journal of Palliative Medicine, vol. 10, no. 4, pp. 845–850.

Agnew, A., Manktelow, R., Taylor, B. & Jones, L. (2010). Bereavement needs assessment in specialist palliative care: a review of the literature, Palliative Medicine, vol. 24, no. 1, pp. 46–59.

Aspex Consulting (2010). Palliative care service delivery framework and funding model: final interim report, Aspex Consulting for Department of Health, Melbourne.

Broadbent, A. & Mc Kenzie, J. (2006) Wagga Wagga specialist outreach palliative medicine service: a report on the first 12 months of service. Australian Journal Rural Health; 219-224.

Clark, R. Eckert, K., Stewart, S. Phillips, S. Yallop, J. Tonkin, A. & Krum, H. (2007). Rural and urban differentials in primary care management of chronic heart failure: new data from the CASE study. MJA; 186 (9).

Fried O. (2000). Providing palliative care for Aboriginal patients, Australian Family Physician 29, 11, November

McGrath P, & Phillips E. (2008). Aboriginal spiritual perspectives: Research findings relevant to end-of-life care. Illness, Crisis, and Loss; 16(2): 153-171.

McGrath P. (2006b) Exploring Aboriginal peoples’ experience of relocation for treatment during end-of-life care, International Journal of Palliative Nursing 12,2:75-82.

McGrath P. (2007). I don’t want to be in that big city; this is my country here’: Research findings on Aboriginal peoples’ preference to die at home. Australian Journal of Rural Health 15(4): 264-268.

McGrath, P. (2008). Family care giving for Aboriginal peoples during end-of-life: Findings from the Northern Territory. Journal of Rural and Tropical Public Health 7: 1-10

McGrath, P., Holewa, H., Patton, M.A., Ogilvie, K., Rayner, R. (2005). New Approach to Indigenous Palliative Care Service Delivery: A Living Model, 8th Australian Palliative Care Conference, Sydney.

Palliative Care Australia (PCA) (2004). The hardest thing we have ever done: The Social Impact of Caring for Terminally Ill People in Australia, PCA, Canberra.

Taylor K, Thompson S, Smith J, Dimer L, Ali M, Wood M. (2009). Exploring the impact of an Aboriginal health worker on hospitalized Aboriginal experiences: Lessons from cardiology. Australian Health Review; 33(4): 549-557.

Thompson G, McClement S, Daeninck P. (2006). “Changing lanes”. Facilitating the Transition from Curative to Palliative Care. Journal of Palliative Care; 22(2): 91-98.

To T, Boughey M. (2010). Referral patterns to a palliative care service in rural Australia servicing Indigenous Australians. Internal Medicine Journal, (early view): 1-10.

van der Riet P, Pitt V, Blyton G. (2011). Nursing care of individuals experiencing loss, grief and death. In: P Lemone, K Burke (Eds); Medical Surgical Nursing. Sydney, NSW: Pearson.


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