When do you need palliative care?

At the end of life, if a person feels he has lived a meaningful life, and there is minimal unfinished business, death is no longer an issue.

In a consumer-based society, there is a link between the needs of the consumer and the services provided by the vendor or provider, be it as an individual, an organisation or the government.

Healthcare is one such area.

A person with a blurred vision may seek an ophthalmologist and a pregnant lady will seek an obstetrician.

The user and provider usually will have an idea of what the needs are and the options of therapeutic interventions to achieve a possible solution.

But what about a palliative care user? What are the issues that would lead one to ask for palliative care and what are the expectations?

In Malaysia, this is an area of concern as the potential health service seeking patient or a family member has a wide ranging perception of what they feel are “valid” reasons to seek palliative care.

For many patients and caregivers, the need for palliative care is suggested by a doctor.

Often, the doctor is of the view that there is a transition in the goals of care – one where perhaps the patient seeks comfort and maintenance of quality of life, transitioning from the ongoing pursuit of curative treatment.

In other cases, the doctor may refer for specific expertise in managing pain and other symptoms whilst the patient continues with treatment to reduce disease progression.

Locally, many doctors are still unaware of the scope of care that palliative care offers and the differences amongst the services offered by different service providers. This is due to a lack of education of doctors, and a lack of regulatory and licensing control.

For a patient and family, when would they seek palliative care?

Beyond those where the recommendation has come from a doctor, it is usually when they require assistance at home when there is realisation that support and advice is needed to care for someone who is seriously ill.

Often, this advice is given by friends or the internet.

Unfortunately many, including medical professionals, still wrongly equate a need for hospital beds and oxygen supplying machines as a palliative care request when technically, it is an issue of a loan of medical equipment.

Many studies have been done with regards to understanding what patients require when faced with a life-limiting condition.

These include the alleviation of pain and suffering, participation in the decision making process, avoiding the prolongation of the dying process which can lead to more suffering, a sense of completion of life, strengthening of relationships with those that matter and finally being treated with dignity as a person.

It really is about the notion of wanting medicine to treat a person who may now be focusing on what are the values that are important rather than solely on the disease.

Humanity requires each person to find value in their life in an environment which gives them meaning. Even at the end of life, if a person has felt that they have lived a meaningful life, and there is minimal unfinished business, death is no longer an issue.

The efforts of medicine is then to work with the patient and family to achieve a sense of value and meaning even if the disease can no longer be cured.

The management of grief and loss is a necessary accompaniment in some of these cases.

As Malaysia develops into an ageing society, there is a huge need to improve palliative care awareness in both the medical community as well as the public.

Palliative care is a public health issue as it is in many countries.

Practitioners and services should be regulated; greater public education is necessary so patients are aware of what they can seek in their times of need, and have confidence in the service when they are referred.