If someone you know has a serious illness and is experiencing pain, do you think they deserve to have the best care possible, and their pain managed?
Initiated by Hospis Malaysia, the National Awareness Campaign themed ‘Living & Dying in Pain, It Doesn’t Have to Happen’ aims to place the importance of improving access to palliative care services on the national agenda so that unnecessary pain and suffering from a life-limiting illness can be significantly reduced and properly managed.
Around the world, 75% of people cannot access the controlled medicines they need to treat moderate to severe pain. This may result in people living and dying in treatable, but uncontrolled pain.
Severe pain is debilitating and affects every aspect of the life of the person experiencing it, as well as the lives of family members and carers. In 2013, the United Nations Special Rapporteur on Torture and other Cruel, Inhuman or Degrading Treatment or punishment, Juan E. Méndez, presented a report to the UN on torture in health care. He identified denial of pain relief as being tantamount to torture.
For someone living with a life-limiting illness, unmanaged pain and other symptoms and unaddressed psychosocial and spiritual concerns add a huge burden to a patient’s quality of life. Palliative care is a medical specialty that offers the skills necessary to support the patient and their family with the aim of improving their quality of life despite a life-limiting illness (cancer, organ failure, AIDS, progressive neurological disorders). Research shows that good assessment and management of physical and emotional symptoms early in the patient’s illness can reduce the burden for both the patient and their families and forms the foundation of quality palliative care.
The Scale of Suffering
Worldwide, it is estimated that over 40 million people each year require palliative care. Of the 20 million that require palliative care at the end of life, it is estimated that 18 million people do not receive it. Echoing these findings, in Malaysia, estimates from a recently published palliative care needs assessment revealed that every year more than 56,000 people require palliative care at the end of their lives, with less than 10% receiving it.
One of the key barriers to more people in need accessing palliative care services is the lack of awareness by the public.
A public survey in 2016 revealed that over 90% of Malaysians are unaware about palliative care.
By 2030, Malaysia will be an aging nation where the proportion aged 60 and above will make up 14% of the population.
In light of this, the urgency for palliative care to be delivered at some minimum standards, and as part of an integrated approach and a fundamental component of the continuum of care throughout the life course, is growing stronger.
Therefore, more support for public awareness initiatives to inform and educate the general public is important to drive the changes required at the national, community and provider levels.
Why is it important to advocate for palliative care and pain management?
Palliative care and pain control is a human right and component of the right
to the highest attainable standard of health
Palliative care is an essential and needed health care service within Universal Health Coverage (UHC) as defined by the
World Health Organisation. The two key elements of UHC are 1) accessibility and 2) affordability. This means that the full range of essential health services, including promotion, prevention, treatment, rehabilitation, and palliation must be available and accessible to all people, without risk of impoverishment or financial hardship. The WHPCA published a report: Universal Health Coverage and Palliative Care: Do not leave those suffering behind, which provides more detail.
The new Sustainable Development Goals include palliative care as a component of Goal 3: ‘Good health and well-being: Ensure healthy lives and promote well-being for all at all ages’. The WHPCA report: ‘Palliative Care and the Global Goal for Health: Right. Smart. Overdue.’ explains this further.
At the World Health Assembly in 2014, UN Member States unanimously passed the resolution: WHA 67.19: ‘Strengthening of palliative care as a component of comprehensive care throughout the life course’. This resolution calls on national governments, supported by the World Health Assembly, to ensure that palliative care and pain management is available and accessible to all people. Malaysia was a signatory to this resolution.
Lack of education and training in Malaysia
‘Unreasonable fear of opioid use leads to increased suffering worldwide’World Hospice Palliative Care Alliance
As pain is one of the most common and distressing symptoms that patients with a life-limiting illness will face, pain management is integral to palliative care. Pain can be effectively controlled with the use of opioid medications, which are also the least expensive and simplest method of pain management.
Sadly, fears and myths of addiction, strict regulation, and inadequate training and understanding of the use of opioid medications among healthcare professionals can limit access to oral morphine and other opioid preparations for pain management.
‘Opiophobia’ was coined to describe the unreasonable fear about the risks associated with opioids, which can arise in patients, family members, healthcare providers, and members of the public.
About the Campaign - Living & Dying in Pain, It Doesn't Have to Happen!
How can you support us?
We have developed resources that you can use to support this campaign (please see campaign toolkit downloads below).
- Professionally designed posters (with a space to insert your own logo)
- Professionally designed flyer (with a space to insert your own logo)
- Articles addressing the theme
- Campaign video
Please see below for some suggestions on how to support the campaign:
- Pledge your support for palliative care
- Social Media
i) Support us by adopting the Facebook profile badge throughout the campaign;
ii)Show your support for the campaign, by sharing our posts around the campaign, or by crafting your own message and including the hashtags #StopPainMY and #palcaremy.
- Share our collateral – Print out the campaign posters or flyer, or download our short campaign video and display/distribute them around your place of work or study (see ‘Campaign Toolkit Downloads’ tab below)