There is a misconception that palliative care applies only to advanced stages of illness and end-of-life care. In fact, palliative care has a place early on and at every stage of dealing with a life-changing illness - as this article and the experts interviewed in our fascinating podcast explain.
"In a nutshell, palliative care is a holistic approach to the relief of suffering associated with any stage of a healthcare journey," says Dr Zethu Dumakude, Senior Medical Adviser for Care Coordination Services at Discovery Health.
"For example, when palliative care forms part of a treatment plan, it lessens the severity of symptoms, which may vary from pain and nausea to depression. Palliative care promotes a better quality of life at every stage of the process. At the same time, when palliative care is considered early on in a treatment journey, management and care seem to be far better aligned with a patient's own personal preferences, values and goals."
Many studies have clearly demonstrated the benefits of palliative care and its relevance at different stages of a healthcare journey.
"Interestingly, studies have also shown that when early-onset palliative care is implemented alongside a person's healthcare treatment plan, it not only improves their experience and quality of life but also reduces emergency room visits and hospitalisation. That's because palliative care means individualised, early support at every stage of the healthcare journey, so most potential complications are often prevented or dealt with earlier," adds Dr Dumakude.
Listen to our podcast on palliative care to better understand this support
Our expert guests provide key insights into palliative care:
"Palliation does not mean we've given up on you. Palliation is the support needed to improve quality of life and it starts from the beginning, from diagnosis throughout the continuum of care, intensifying as the disease progresses." Dr Nosisa Matsiliza, general practitioner who works in palliative medicine
"We have to change the perspective that palliative care is an option only once there is no longer an option to continue with active treatment. Palliative care is about having a good quality of life, independent of the stage of the disease." Dr Zethu Damakude
"Palliative care can be offered alongside treatments aimed at altering the course of the disease - such as chemotherapy and radiotherapy - to ensure that, even during treatments, your quality of life remains as optimal as possible." Dr Margie Venter, palliative oncologist
When should we start a conversation about palliative care?
"Usually, it starts upfront with your medical team discussing your diagnosis, what it means, and its impact on you, your family and - most importantly - on your goals and expectations of care. The focus will be on your values and what's most important to you," says Dr Charmaine Blanchard, a GP with a special interest in palliative care.
"After an in-depth assessment, an individualised management plan will be put together. This may include consulting with other medical professionals, such as pain specialists, surgeons, physicians, oncologists (in the case of cancer), psychiatrists, allied health professionals or social workers."
Aside from alleviating pain and suffering, palliative care will also help you to:
- Live the best possible life, for as long as you can.
- Continue being in control of your life and your care by being involved in all decisions about your care.
- Know that your loved ones are being supported, too.
"Palliative care not only brings relief to a person diagnosed with a life-changing illness, it also provides support to their loved ones or caregivers," explains Dr Blanchard.
"This form of care is a team effort with you at the centre. The aim is to address your physical or medical needs as well as any emotional, social and spiritual needs which result from your illness or treatment."
When should palliative care start?
Palliative care has traditionally been viewed as a treatment of last resort in the final days or weeks of life. But, as Dr Blanchard explains, "At this point, it would be difficult to make a meaningful impact on your or your family's suffering, as the time at hand would be too short.
"It makes sense to start palliative care soon as it becomes apparent that a person is dealing with a life-changing illness," adds Dr Dumakude. "That's because palliative care puts a focus on living actively despite having a life-changing illness."
There are a number of options for care available to you, depending on your preferences and what is most appropriate at the time:
- Staying at home while being supported by your doctor and by Hospice care.
- Being admitted to hospital or to a care facility.
- Going to a Hospice for ongoing palliative care service. "We must move away from the notion that Hospice is 'a place we go to die'," says Dr Dumakude.
What else do people considering palliative care need to know?
To make decisions about what will work best for you, you need to have these important discussions with your healthcare team:
- Ask your medical team about the advantages and disadvantages of any further treatments, and how they will impact on your quality of life or prolong your life. This will help you decide what is most important and of value to you, given your goals at the time.
- Talk to your family and doctor about your preferences for end-of-life care if you are not able to speak for yourself one day. Your wishes should be documented in a living will and advance directive (click on the links here to learn more about these).
- Contact the Hospice Palliative Care Association of South Africa to find out what they offer. "And don't put this at the end of your to-do list because even if you're receiving treatment to manage your illness they will still be of tremendous help," says ...
- Find out more about Discovery Health's Advanced Illness Member Support Programme which provides medical scheme members facing a life-changing illness with holistic support, ensuring they:
- Understand their diagnosis and the impact it may be having on their wellbeing.
- Connect with a healthcare provider who can support them with their advanced illness and quality of life.
- Have access to information that can assist with ensuring important information is in order and up to date.