Palliative care ensures quality of life and living as actively as possible even in the face of illness. The sad thing about illness is that it changes a person from being an active member of their family and community to becoming a ‘patient’. An illness is only a small part of what they are. In the words of Dame Cicely Saunders, founder of the hospice movement, “You matter because you are you, and you matter to the last moment of your life.”
So the aim of palliative care is to help people live actively with an illness, and to value each person for who they are, recognising the dignity and worth of each individual. The essence of palliative care is the relief of suffering.
Each person has unique needs and it’s really important to ask that person (not patient!) what their needs are. We cannot assume that we know. Hospice care is holistic in that it addresses multiple needs, tailored to each individual. This approach means that hospices have a multi-disciplinary team of nurses, doctors, social workers, spiritual counsellors, plus additional healthcare workers who extend the care to the family too.
In palliative care we never look first at the illness. It is important to have a diagnosis and to work with the primary doctor or clinician, but more important to know the person referred for care. We need to understand that person – their fears, their choices – before we can provide clinical advice and treatment. It is critically important that pain and other symptoms are controlled so the person can interact with family and friends.
One of the challenges facing people working in palliative care is that they become very close to people in their care and have a lot of experiences of personal bereavement. The nurse, too, grieves, so hospices have a strong focus on caring for the carer. The privilege of working with people at the end of their lives is transferred to our own lives. This is a gift of this job – recognising the courage and the love that patients and families share.
What the future holds
As chair of the Worldwide Hospice Palliative Care Alliance, I will coordinate the strategy to support the vision of ‘A world with universal access to affordable, appropriate, quality palliative care’ and to implement the World Health Assembly resolution on palliative care. I will be working with regional and national associations to assist them with advocacy to government, with the end goal of integrating palliative care.
The challenges lies in making sure health care workers are trained, and one of the big gaps in the training of doctors is that of pain management. There was significant growth in South African hospice services during the period when the US government, through the United States Agency for International Development (USAID), funded Hospice Palliative Care Association (HPCA) for building hospice capacity. USAID continue to fund HPCA but the funds are now for building government capacity.
So the growth we saw from 52 hospices in 2004 to 202 hospices in 2011 has declined to 153 because of funding issues. Our hospices need funding support from government, corporates and communities. Hospice care is given freely. We also need volunteers to work in local hospices, to spread understanding that hospices are about life, living and love. This will change perceptions about hospices so that people are not fearful of receiving hospice care when they or their family need it.
On dying with dignity
“Dignity” is a palliative care word, and it is interesting that it has been adopted by the right-to-die (to end suffering) campaigners. Dignity should not just be something to be considered with death – it should be applied throughout life and illness. People consider ending their lives prematurely because of fear of their illness and death. What palliative care offers is good support to the patient and family, throughout and at death, so that the majority of people delay the wish to die. For most of the people I deal with, each day is precious and their wish is for more time rather than to end their lives prematurely.
Need to know pointers
· 98% of care is provided in people’s homes.
· The goal of palliative care is to relieve suffering.
· Care is given regardless of people’s ability to pay.
· Palliative care is applicable from as early as diagnosis.
Dr Liz Gwyther is the CEO of the Hospice Palliative Care Association in SA and the newly appointed chair of the Worldwide Palliative Care Alliance. For more information, visit www.hpca.co.za