Defining palliative care
According to the definition by World Health Organization (WHO), palliative care:
- provides relief from pain and other distressing symptoms;
- affirms life and regards dying as a normal process;
- intends neither to hasten or postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patient’s illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness.
Simply put, palliative care focuses on providing and maintaining the highest quality of life of the individual — often living with a life-threatening disease — and their family, who is usually the primary caregivers of the individual. The goal of palliative care is to prevent, identify and treat — as early as possible — the symptoms and side effects of the disease. Unlike a one-size-fits-all solution, palliative care focuses on the specific person as a whole (i.e. person-centred care) and considers their physical, psychosocial and spiritual well-being as well.
How did it begin?
The origin of modern palliative care can be traced back more than 50 years to the hospice movement in the 1950s. However, palliative care only started to gain momentum in 1967 when Dame Cicely Saunders, who was then a nurse-turned-physician, established the world’s first hospice — St. Christopher’s Hospice — in South London, United Kingdom. At St. Christopher’s Hospice, Cicely Saunders housed a large number of mostly terminally ill patients, and was determined to use her previous experiences and research in pain control to identify the best methods to care for them. Today, Cicely Saunders is often credited for the birth of the modern-day hospice and palliative care movement.
The concept of palliative care grew even more popular in the medical field as more attention is devoted into the research and treatments of some of the biggest noncommunicable diseases of our time, such as cardiovascular diseases, cancer, chronic respiratory diseases, AIDS and diabetes. These diseases often result in extreme pain and distress, especially in the later stages, for both the patient and their family, who would seek relief from the suffering physically, psychosocially and spiritually. Modern palliative care, which was once mostly reserved for end-of-life care, is also now applied to a range of diseases beyond those as mentioned.
In recent years, an increasing number of researchers are also exploring palliative care in the context of dementia, which has affected more than 50 million people in the world and is fast becoming the world’s biggest killer. As scientists around the world struggle to find a ‘silver bullet’ for dementia, palliative care is often deemed as the next best alternative in managing the progress of the symptoms.
Why do we need palliative care?
In several studies, palliative care has been proven to provide many benefits to the patient. Patients exposed to palliative care tend to experience a higher overall quality of life, better mood, greater autonomy and less stress.
In a randomised clinical trial, patients with lung or gastrointestinal cancer who were assigned to early palliative care had a higher quality of life and less depression. Also, in a separate study, palliative care proved to relieve pain and, to a smaller extent, anxiety and confusion, among older patients during their final week of life in nursing homes.
In addition, palliative care focuses on the caregivers, as much as the patients. Often, the closest caregivers, such as families and friends, suffer from accumulated stress and burnouts after long periods of caring for a terminally ill loved one. Palliative care seeks to provide caregivers with medical, social, emotional and practical support as well.
Poor access to palliative care
Unfortunately, in spite of its growing popularity, access to palliative care has been poor. Today, only about 14% of people worldwide who need palliative care currently receive it. Most countries have also yet to include palliative care in their national health policies and systems, and proper training on palliative care for health professionals has been limited across the world.
In the field of dementia, palliative care has yet to be applied on a wide-scale for most dementia care institutions around the world as well. In fact, a study by the University College London revealed that 99% of people with advanced dementia are not getting specialist care and that there is a lack of palliative care services in the community.
But, not all hope is lost
Despite the less-than-optimistic statistics and reports, we should not be discouraged. The good news is that more organisations are starting to realise that there is no one-size-fits-all solution to caring for people living with terminal illnesses, like dementia.
For example, Hogewey specially designed a ‘dementia village’ in Netherlands that is now being replicated in several parts of the world. Stftelsen Silviahemmet also believes in maintaining the highest quality of life for people with dementia and their families, and has been educating and training dementia care institutions and caregivers around the world in palliative care for people with dementia for more than 20 years.
At Swedish Care International, we also do our part in promoting a palliative care approach towards dementia and elderly care as well. Through our education courses and training programmes, we hope to make good dementia and elderly care based on Swedish knowledge and best practices available around the world.
So, what’s next?
As the global population ages rapidly and people continue to live longer, the world is and will be facing a massive burden on its societies and healthcare systems. With the changing demographics, we can and should expect a rise in noncommunicable diseases (dementia and cancer in particular), and we should be prepared for it.
The next step then is for countries — governments and elderly care institutions alike — to gain a deeper understanding of these diseases and the available treatments or care approaches out there. In time to come, the ‘silver tsunami’ will also force governments and elderly care institutions to adopt a more well-rounded care approach for its elderly population.
To read more about palliative care, we suggest you to visit WHO website. The European Association has also published a white paper on palliative care and gave recommendations specifically to dementia care.