Saturday October 13 2012 is World Hospice and Palliative Care Day.
Thousands of people around the world will undertake activities to raise awareness and funds, and to galvanise support for the development of hospice and palliative care services, particularly for older people. The theme this year is ‘Living to the end: palliative care for an ageing population’.
The world's population is ageing, as highlighted in the recently released Help Age International and UNFPA report on ‘Ageing in the 21st Century”. In most countries, the population aged 80 or older is growing faster than any other age group. This is a cause for celebration but also a challenge. As UN secretary general Ban Ki-Moon highlights in the preface to the report, one of the most notable challenges to an ageing population is “the ability of over-burdened health-care systems to serve much higher numbers of people.”
This is of particular significance to palliative care services, as shown by figures released today by the World Health Organization. Of the approximately 24 million adults requiring palliative care at the end of life, 66% of these are older people over the age of 60. There are two very notable points about these statistics. One is that, as Dr Emmanuel Luyirika pointed out in the WPCA news release, these statistics only show a percentage of the need. The estimate does not take into consideration those who require palliative care throughout the course of conditions. It also does not take into consideration the need for palliative care support of family members and carers.
How many of those 15.8 million older people are accessing the care that they need?
So we now have figures for the number of older people who are in need but we do not know how many older people can actually access the palliative care that they require. While we don’t have the answer to this, it is clear that access is far from adequate. 80% of the world’s population live in countries with no or low access to treatment for moderate to severe pain. (WHO) 42% of countries have no identified hospice and palliative care services. (WPCA, 2011) 99% of people living with HIV and cancer with untreated pain, are in the developing world (GAPRI). It is also highly probable that older people have poorer access to palliative care services than other age groups, as they do health care services more broadly.
The data released by WHO also highlights the disease groups where people over 60 years of age make up the majority of those in need of palliative care. These include Alzheimer's and other dementias, Parkinson's disease, chronic obstructive pulmonary diseases, cardiovascular diseases, diabetes, rheumatoid arthritis, nephritis and nephrosis and cancer.
Globally we do not know the figures for how many people within each disease group actually access palliative care, but we have data in the UK that shows that 83% of people being seen by specialist palliative care services have a cancer diagnosis. This suggests that the huge amounts of older people living and dying with other conditions, such as dementia and cardiovascular diseases, do not access the vital services that they need.
It is vital that we ensure that older people are cared for with dignity and according to their wishes throughout the course of the illness, including at the end of life. In the UK, it is estimated that only 3% of the population of all ages want to die in hospital as opposed to another setting. Yet, of those over the age of 75 who died in 2010, 54% died in hospital. (National End of Life Care programme: What we know now that we didn't know a year ago). This figure, along with research, suggests that the care of older people at the end of life is currently far from optimal.
What needs to be done
To provide hospice and palliative care services for the ageing population, palliative care services and skills needs to be integrated into the settings where care is being provided. Specialist palliative care services are unlikely to be able to meet the vast and growing need in the developed and developing world. For this reason, our focus has to be on the integration of services within settings where care is already being provided, whether this is in the community, in hospitals or in care homes.
For World Hospice and Palliative Care Day, we are calling for urgent action from UN agencies, governments, the private sector and civil society to ensure the following:
- the inclusion of older people in decision-making around their care options, including at the end of life
- existing health policies address the unique palliative care needs of older people
- universal access to hospice and palliative care for older people living with, and dying from, life-limiting conditions including non-communicable diseases
- access to, and availability of, pain medications, including oral opioids, for older people worldwide
- adequate support, training, supplies and equipment so that health professionals and carers can provide palliative care for older people in the community, in inpatient facilities and in people's own homes
- the advocacy agenda on active ageing promotes compassionate and dignified care for older people with life-limiting illnesses.
World Hospice and Palliative Care Day may only be one day a year but this does not mean this call for action finishes on Saturday evening. Building the evidence, developing innovative models of care and advocacy around increasing access to palliative care for older people has been going for years and will continue to be a priority for years to come. Older people, and their family members and carers, have the right to quality palliative care throughout the course of their illness and through to the end of their lives.