Palliative care is important for me for several reasons. First of all my compassion for the most vulnerable individuals in our society, and particularly for those with dementia and for those who are dying. I too have a deep personal experience in connection with the care and death of my brother and my mother, but both of them were very well cared for in the spirit of the philosophy of palliative care: “care for the dying, and support for the bereaved."
What meant a lot to me was the possibility to remain alongside them while dying — bedside — feeling the commitment and support from the staff. Palliative care sees the patient as a whole human being and sets out to respect him - not only the person's body, but also his mind, his soul and the social circle in which he functions and contributes.
My brother died from cancer and was cared for at the end of his life at a palliative care unit in Germany. My brother and I, and the rest of the family, experienced the most important aspects of good palliative care.
Palliativ care is not only a question of pain control or other forms of symptom control in a terminal illness. It is also a question of psychological care. Most patients suffering from cancer present a complex clinical picture. So do most patients suffering from dementia as well, and relatives are always involved.
As a daughter and family member I have also experienced my mother´s dementia. Due to this personal experience I know that there is a great need for specific competence in dementia care in terms of knowledge, attitude and skills in order to give good care to the patient and to include and support the whole family. In dementia care — as in all palliative care - the “unit of care" which involves both patient and family is of great importance.
This concerns all of us at the end of our lives — be it cancer, dementia or whatever else that might kill us.
Specific competence in the field of dementia care, based on the philosophy of palliative care, was the starting point of the establishment of the Silviahemmet Foundation in 1996.
This innovative approach was introduced by professor Barbro Beck-Friis, the pioneer of Swedish palliative care and director of the Silviahemmet from its start in 1996 until 2004. Today the competence in dementia and palliative care is ensured by the current director, doctor Wilhelmina Hoffman, specialist in dementia care, and professor Peter Strang, member of the Silviahemmet board and, so far, the only professor in Palliative Medicine in Sweden.
Silviahemmet has educated more than one hundred licenced practical Silvia-nurses, from a one-year full time education till today a two-year part-time education, managed on-line in co-operation with the Sophiahemmet University College in Stockholm. After completed their education most Silvia-nurses work as team leaders, lecturers or instructors all over Sweden, spreading the message of palliative care, also abroad. Recently also an education for registered nurses has started.
A second aspect that is important to me is the discussion to integrate palliative care into the systems of health care and to declare it a human right. The human and financial resources and the organisation of palliative care differ between countries and regions. I know that this is given high priority on your agenda and that these issues will be discussed at many sessions during this congress. I will try to do my best to support you and to increase the awareness concerning palliative care and the needs of the dying. During this congress you will be able to see many other initiatives and examples of better care, better education and better research. One example is the work that will be presented in the WHO booklet on “Better Care for the Elderly."
I have mentioned palliative care for the patients with cancer, dementia and the elderly knowing that there are many other groups of patients that also should receive palliative care when they need it irrespective of where they are cared for; at home, hospice, care home or hospital and I especially want to draw the attention to the fact that there are also dying children, that they too are in need of palliative care adjusted to their special needs.
I wish you all inspiring days at this EAPC world congress of palliative care. I congratulate and thank the scientific committee of EAPC and the Austrian organisers bringing together professionals in palliative and “end of life care" from all around the globe.
Hippocrates once said:
“to sometimes cure, to often relieve, to always comfort!"