Because patients who need palliative care matter

  • Family
  • Saturday, 20 Apr 2019

Healthcare workers need to be curious about what matters to the patient and care about how the illness is affecting them personally. — AFP

How often do we reflect on our purpose of being alive and how we function day to day?

How would it feel if you were suddenly invisible to others?

That your voice, thoughts, actions and presence are suddenly irrelevant to everyone else?

Would that matter to you?

Our lives usually revolve around relationships, work, and personal aspirations and ambitions, and this usually requires our existence and presence to be affirmed by others.

Society values some people and others are often forgotten or invisible.

These are often minority and marginalised groups such as the poor, sick, homeless, refugees and others.

Medicine is often perceived as a curative concept, providing ans-wers to the ailments that affect the community.

Doctors and governments revel in the latest research that push the boundaries of death even further from the diseases that seek to reduce our time on earth.

Resources are provided for healthcare measures that are perceived to reduce mortality.

Yet over 160,000 deaths were recorded in Malaysia in 2016.

At any one time, there are hundreds of thousands of Malaysians suffering from advanced and late stage diseases.

These include cancer, organ failures, neurological diseases, dementia, HIV and others, which also involve children.

Every February during World Cancer Day, and in October, which is celebrated for breast cancer awareness, the messages that bombard the public are about cancer prevention and early detection, as well as the clamour for medications that hope to cure cancer.

Those with advanced disease and those that care for them are hardly ever mentioned – don’t they matter too?

The theme for World Palliative Care Day in 2018 was “Because I Matter”.

There are 61.5 million people suffering across the world who could benefit from palliative care.

Even in Malaysia, only about 10% of those that could benefit from palliative care are receiving some form of such care, either in the hospital or at home as Hospis Malaysia is providing.

The voices of our patients and their caregivers need to be heard. They are our mothers, fathers, sons and daughters, and they matter.

They need to matter to governments, civil society, philanthropic organisations and others.

Although they are suffering, they also offer an insight to solutions that can help them and others.

Through listening to patients, much work has been done to develop appropriate care.

Care of pain and other issues has improved through listening to what patients want, rather than what doctors want.

Patients and families should be our partners in healthcare, rather than being seen as customers or clients who are a commodity for healthcare institutions.

Access to palliative care for everyone in our community needs to be integrated as part of Universal Health Coverage, together with access to essential medicines that are needed to alleviate suffering.

Funding needs to be provided to ensure this happens.

Doctors and nurses, as well as other healthcare workers, need to respect every patient they come into contact with.

They need to be curious and care about what matters to the lives of the patient and how the illness is affecting them.

Doctors are sometimes too preoccupied with lab results and blood tests to notice the sense of loss, grief and the senselessness of suffering that may affect the patients.

They matter.

“Because I matter.”

Dr Ednin Hamzah is the chief executive officer of Hospis Malaysia. April is Palliative Care Awareness Month.

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