Dr Gwyther talks to ehospice about palliative care, universal health coverage, and the new development agenda.
Could you talk about the need to include universal health coverage in the new development agenda?
The new development agenda aims “to end poverty in our time.” We are all aware that ‘the poor become sick and the sick become poor.’ Universal health coverage is an essential element to combat poverty. A lot of poor people do not access health care. For many people in the world, basic existence is their priority. Health is not a priority.
Also, access to health care facilities is an issue. People can’t get to health care services. In many countries, palliative care is taken to the patient at home by hospice staff, so the patient and family don’t have to cover the costs of transport to health care services. If there was universal health coverage there could be more emphasis on prevention and maintaining stable health even in the face of chronic illness.
Then, we cannot ignore the fact that everyone is going to die at some stage. What will be the quality of that experience and who is going to provide end of life care?
Universal health coverage includes a number of aspects described in public health: prevention of illness, promotion of health, cure when possible, and rehabilitation. But it is essential that this description also includes palliation for end-of-life care. We can’t ignore people who are dying because they don’t fit into our concept of having a healthy community.
In South Africa, as in many parts of the world, hospitals are geared towards acute curative care. Our public health sector community health centres are geared towards managing chronic illness, but there is neglect of those people whose disease is progressing despite optimal treatment.
The statement made by Dr Balfour Mount, Canada’s ‘father of palliative care,’ is that “these people are the sickest of the sick and they deserve the best the healthcare system can provide.” Instead, in many places, they are abandoned by the healthcare system and sent home to families who are distraught about their loved one’s condition and who don’t have the skills for nursing, especially nursing the sickest people. So it is essential that palliation is included in universal health coverage.
Could you tell me why it is important for palliative care to be included in the post-2015 development agenda?
It is important to care for people throughout their illness and to provide comprehensive care tailored to each person’s particular needs. Palliative care is individualised care addressing the illness and the patient’s physical discomfort and psychosocial needs and includes support for the family. Many people have the misconception that palliative care is only terminal care, whereas palliative care should actually be started earlier in the illness to improve a person’s quality of life. There are better patient and carer outcomes if palliation is started earlier in the illness. Then there also is the role that palliative care has in prevention messaging and ensuring the adherence to medications.
Although a great deal of funding was directed to palliative care interventions through MGD #6 (Combat HIV/AIDS, malaria and other diseases), Non-communicable diseases (NCDs) were left out of the Millennium Development Goals, so for example cancer and other chronic diseases that impact hugely on quality of life were not considered.
Is access to medicines an important part of palliative care?
Palliative care medication is not expensive and it should be on all countries Essential Medicines Lists, in particular, this must include pain medication. A recent report from the International Narcotics Control Board (2009) described that 90% of strong opioids are utilised by less than 10 countries, and that these countries are all in the developed world. This translates into the fact that people in the rest of the world are suffering unrelieved pain.
We need to make sure that we remove the legislative barriers to pain relief, that we ensure the logistical provision of pain medication, ensure that supply chain functions properly, and that there is education of the prescribers of how to manage pain effectively and education of the public to know that you don’t have to suffer pain, that pain can be managed safely and effectively.
What would you like to see in the new development agenda to ensure that this all happens?
The one new goal that we want is: Universal Health Coverage. Within the universal health coverage goal, we must include palliative care. Also to measure and to hold countries to providing palliative care within the universal health coverage, we would need two basic indicators: 1) Percentage of patients referred to palliative care, and 2) Opioid usage in a country. Currently every country has to report on this to the INCB so this would not be an additional reporting burden.
Is there anything else that you would like to add?
Palliative care and pain relief should be recognised as essential Human Rights. We need to keep in mind that compassionate comprehensive care for patients and families will relieve considerable suffering and enhance the dignity of the individual living with life-threatening or life-limiting illness.