Hospices are still commonly associated with HIV, cancer care and death. However, this needs to change. This misconception prevents people from understanding how helpful hospices can be and how much of a difference they can make to people affected by serious illness.
The rising rates of NCDs (non-communicable diseases) in South Africa has placed an emphasis on rethinking the meaning of hospice and palliative care, as people are living longer with more complex symptoms. The focus, instead of being on end of life care, is shifting towards supporting people to live well for as long as possible.
Hospice care is about improving quality of life for people and their families affected by serious or life limiting illness. This means that their pain and symptoms are controlled, psychological and spiritual distress is acknowledged and addressed.
I am currently working for HPCA (Hospice Palliative Care Association of South Africa) in the Communications Department and have seen first-hand the work that hospices do to improve quality of life for people with serious illness all around South Africa.
Due to the many misunderstandings around hospice and palliative care, it is important to shed some light on the topic to make sure that people understand what hospice and palliative care is, so that they can ask for it if they need to.
The questions I will ask are:
- What is hospice and palliative care?
- Why does it matter?
- How could hospice and palliative care help alleviate pain and suffering and improve quality of life for thousands of patients?
Let’s address the first question: what is palliative care?
From my understanding, palliative care is about improving quality of life for people with life-threatening or life limiting diseases. WHO defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
In my experience with people who have and are currently experiencing palliative care, I have seen such positive change in their life style. They can attend university, go to work, and continue living life in a comfortable manner and importantly not in severe pain or distress.
The most common symptoms palliative care looks to treat is pain, but often people with life-threatening diseases deal with a vast array of other issues like psychological distress or spirituality issues. What palliative care does it put this all together in one sort of “holistic approach” which is not only directed at treating the patients via the medication route but rather aims to address all sources of suffering.
In my opinion and from my involvement with hospices in South Africa we are very privileged in that we have strong and effective hospice movement providing palliative care through the HPCA network of member hospice organisations to people with chronic, life-limiting and life-threatening diseases either at the hospice or at the patients’ homes.
What I have seen is that people prefer to be cared for in the comfort of their own home, than in an often over-crowed and impersonal hospital space.
Over the years, palliative care has changed a lot in South Africa and much of the change has been positive.
For me, one of the main myths around hospice and palliative care is that it is only associated with death, HIV or cancer. This myth is not unique to South Africa and is even seen internationally as well. What needs to be understood is that palliative care is needed for any patient with a chronic, life-limiting or life-threatening disease and like I have said before we are not only talking about patients with cancer, HIV or TB, we are talking about other illness. We are talking about a vast spectrum of patients.
Also, hospice and palliative care is most effective when provided from the point of diagnosis and alongside treatment aiming at curing the disease. For example, palliative care can help alleviate the side effects of chemotherapy, as well as addressing the psychological worry and distress that comes with a cancer diagnosis.
South Africa has a shortage of doctors to visit patients in their communities, which means that the home-based care teams are often led by nurses. The nurses and social workers visit the respective patients and then asses their pain needs.
Nurses can assess a patient and recognises when there is a need for change in the medication being administrated but unfortunately, they are not able to change the dose and leave the medication with the patient. This means delays for patients and unnecessary suffering.
The need for palliative care in South Africa is more relevant as the rate of NCDs rises, and what it is important is that palliative care will need to form an integral part of the response to this. The four big diseases under the NCD remain: lung diseases, cancer, diabetes and heart diseases.
From the first stage of the illness, palliative care is needed for every one of them.
To conclude, it remains crucial for all South Africans to understand the importance of palliative care and the critical role it plays in the lives of patients and families alike. Once this can be achieved, people will know how palliative care can benefit them and that they have a right to demand this care. Once palliative care is integrated into healthcare, there will be a greater focus on dignity, care and compassion within our health system.
Thank you to Nicky GunnClark, Advocacy Officer (HPCA) for helping contribute to this article. To find out more about HPCA and its member hospices please visit our website here.