Urgent action needed: Time to dispel the myths

Categories: Community Engagement.

Access to palliative care and appropriate treatment of pain is clearly a human right, yet there are still millions of people around the world who do not have proper access to these services.

‘Shockingly, 42% of countries do not have any identified hospice and palliative care services and 80% of people globally lack adequate access to medication for treatment of moderate to severe pain. This means that millions of people, especially in the developing world, are living and dying in unnecessary pain and distress,’ stated David Praill, Chair of the WPCA and Chief Executive of Help the Hospices, UK.

To mark World Hospice and Palliative Care Day 2013, thousands of people in over 70 countries will be coming together at events to celebrate, support and speak up about hospice and palliative care. 

Advocates, patients and carers are unified in calling for urgent action from UN agencies, governments, the private sector, and civil society to improve access to palliative care for people with life limiting conditions by integrating palliative care into existing services. They also urge these institutions to engage in public education to dispel unhelpful myths and promote hospice and palliative care facts.

‘World Hospice and Palliative Care Day is a day of celebration for the progress that has been made in reducing pain and suffering. But it is also a day to shine a light on neglected or marginalised groups that are still unable to get the care that they require,’ added Sharon Baxter, Worldwide Palliative Care Alliance and Executive Director of the Canadian Hospice Palliative Care Association.

In addition to better integration of hospice and palliative care into health care, the global hospice and palliative care community is stressing the need for:

  • More training for health professionals and carers
  • Improved access to pain and symptom management medications
  • The inclusion of hospice and palliative care into existing health policies
  • Opportunities for older people to be involved in decisions around their care.

Inaccurate information about hospice and palliative care creates barriers to access that are unnecessary and lead to greater suffering. The WPCA, hospices and palliative care organisations around the world will be working to dispel the following inaccurate perceptions: 

MYTH: Having hospice and palliative care means you will die soon.
FACT: Hospice and palliative care is not just for the last days or hours of life. It is a holistic approach that includes caregiver support, spiritual care, bereavement and much more, which seeks to help people live as well as possible. Studies have shown that early access to palliative care can actually prolong life.

MYTH: Hospice and palliative care is just for people with cancer
FACT: All those who are diagnosed with a chronic life limiting illness can benefit from hospice and palliative care. The latest international research shows that approximately 70% of all people who die would benefit from access to palliative care services.

MYTH: Palliative care only manages pain through the use of addictive narcotics.
FACT: Opioid medications are not addictive when used properly for pain management. Palliative care is a holistic approach which recognises a person’s physical, social, emotional and spiritual needs. Pain relievers like morphine are essential to good palliative care to relieve pain and other symptoms and can be safely used, but other measures such as counselling and social support are also needed to address the other dimensions of suffering, something which the founder of the modern hospice movement, Dame Cicely Saunders, called ‘total pain.’

Dr Liz Gwyther, CEO of the Hospice Palliative Care Association of South Africa said: “We need to get the message out to communities and people who may be in pain that there is a safe effective and inexpensive way to treat pain, that people do not need to suffer, that we can control pain and improve quality of life for people with advanced illness. If we can combat the one myth that using opioids is dangerous we will be able to offer good pain management to many more people.”

To find out more about World Hospice and Palliative Care Day 2013 visit www.worldday.org  

References

Lynch T, Connor S, Clark D. (2013). Mapping levels of palliative care development: A global update. Journal of Pain & Symptom Management; 45(6):1094-1106

Temel JSGreer JAMuzikansky AGallagher ERAdmane SJackson VADahlin CMBlinderman CDJacobsen JPirl WFBillings JA,Lynch TJ. (2010). Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer. New England Journal of Medicine; 363:733-42

Murtagh F, Bausewein C, Verne J, Groeneveld  EI, E Kaloki Y, Higginson IJ. (2013) How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliative Medicine published online 21 May 2013. DOI: 10.1177/0269216313489367. http://pmj.sagepub.com/content/early/2013/05/20/0269216313489367.full.pdf+html