Palliative care for cancer patients at home lacks support, what should the government do?

Illustration of human character of cancer patient lying in bed (freepik.com/author/macrovector).

Author: Aqilatul Layyinah – Social Policy Researcher The PRAKARSA

Cancer is one of the non-communicable diseases with the highest death rate in Indonesia. Data Global Burden of Cancer Study 2020 recorded the number of new cases of cancer in Indonesia reaching almost 400 thousand cases.

Three types cancer in Indonesia with the highest increase in cases are breast cancer (16,6%), cervical (9,2%), and lung (8,8%).

Needs cancer patient during treatment there are various types, such as medication, treatment or therapy, and routine control. They need it too palliative care while at home, and shelter support for patients from outside the area while seeking treatment in big cities such as Jakarta.

Palliative care is treatment to improve the quality of life of patients whose chances of recovery are small.

The problem is coverage palliative care in Indonesia it is still very low, namely 1% of the total terminal patients.

Latest research ours, coming out later this month, shows that the resilience of cancer patients is influenced by support from family, community and work environment.

Field findings in this research prove that the family is the main figure to support and accompany cancer patients during and after the treatment process.

The risk of cancer is increasing, but policies are not yet accommodating

Increased risk About 90-95% of cancer is caused by an unhealthy lifestyle.

Smoking habits, alcohol consumption, obesity, viral infections, and an environment contaminated with pollutants are risk factors that increase the possibility of cancer.

The increase in air pollutants due to climate change also increases the risk of the world's population developing cancer. In fact, 2,6 billion people in poor countries and develop without access to non-fossil fuels, so the increased risk of cancer due to exposure to air pollution also increases.

Enhancement air pollution It is also predicted to increase the risk of lung cancer and the risk of death in patients breast cancer especially early stages.

So far, government efforts to overcome the problem of low palliative care coverage have not targeted home-based palliative care (homebase palliative care). The absence of policies regarding palliative care carried out by families at home means that the need for palliative care training for patient families is neglected.

The population structure in Indonesia will also experience aging and the number will increase sharply due to the current demographic bonus. So the readiness of nurses, families and professional staff in carrying out palliative care must be considered.

sadly palliative care in Indonesia still focused on hospital-based palliative care.

Specific palliative care policies are only regulated in Decree of the Minister of Health (KMK) Number 812 of 2007 concerning palliative policies. This policy only focuses on the implementation of palliative care carried out by doctors, nurses, health workers and other related personnel. The patient's family is still positioned as the target of palliative care.

In fact, the care provided by the family while the patient is undergoing treatment can be categorized as: homebase palliative care.

Unpaid nurses

Research we show that the family is part of the care team because they help and supervise the administration of medication. They also manage side effects, report patient concerns, and provide help with self-care and other things.

They are categorized as family caregivers or informal caregivers who are not paid to provide care to cancer patients.

Model pain trajectory (illness trajectory) used in this research captures how family support greatly influences the physical and psychological condition of cancer patients.

Support from the family makes cancer patients able to go through each stage of treatment according to the type of cancer. Therefore, home-based care is very important for patients because the pre-diagnosis to post-diagnosis process is recognized as physically and psychologically burdensome for patients and their families.

Apart from the absence of policies regarding home based palliative care, training modules for informal family caregivers are also not yet available, so the need for palliative care training for families remains unanswered.

Data on the distribution of palliative care provided by Advanced Referral Health Facilities (FKRTL) or hospitals also could not be found. There is only one national cancer referral hospital that publishes health facility-based palliative care data. So palliative care in health facilities cannot be clearly identified.

Learn from Australia

Australia is one of the countries that has it growing trends in home palliative care practices for patients with incurable diseases.

Things that need to be considered to optimize the implementation of home-based palliative care are the complexity of care and increasing the skills of family nurses to deal with patient symptoms. Also their responsibility for the patient's physical and psychological needs, and the dynamics of the relationship between nurse and patient.

Family caregivers will also be affected physically, emotionally, financially and socially when caring for cancer patients at home. Social burdens such as limited time for themselves, changes in routine, and reduced free time are experienced by family caregivers.

Therefore, the implementation of home-based palliative care practices is mandatory to provide policy support for nurses from psychosocial, health and work aspects. This support can be realized by expanding the benefits of the national health insurance program for the families of cancer patients.

The central, provincial and district or city governments need to develop policies and programs that integrate palliative care for all cancer patients at all levels of health facilities with home-based palliative care.

This integration can provide education to family nurses on what needs to be done during the pre-diagnosis process, during treatment, and after treatment for cancer patients. Improving the quality of life of cancer patients and their families can also be guaranteed if this integration is carried out in accordance with existing good practices.

One important note for the government is that recommendations regarding optimizing the role of families in implementing home-based palliative care cannot be achieved without government support.

The government must be present to support the palliative care system in Indonesia to run well and completely. So the care process for cancer patients is not only the responsibility of family nurses and health workers, but also the responsibility of the state.

However, the importance of the transformation of palliative care in Indonesia has not been reflected in the content Draft Health Law which is being discussed in the Indonesian House of Representatives (DPR).

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This article was previously published on theconversation.com by title "Palliative care for cancer patients at home lacks support, what should the government do?”. Click to read: theconversation.com

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