Globally, about 57 million patients and families need palliative care annually. Almost 26 million near the end of life (45%) and over 31 million prior to the last year of life (55%), including nearly 4 million children. About 69% of people needing palliative care suffer from non-communicable diseases like cancer, dementia, stroke, heart-liver-kidney failure, lung diseases, or injuries. Almost 25% suffer from communicable diseases like HIV, TB, and even COVID-19.
“Palliative care is a multidisciplinary practice usually delivered by a team of experts, including doctors, nurses, social workers, and caregivers.” Dr. Zipporah Ali, Executive Director of the Kenya Hospices and Palliative Care Association (KEHPCA).
According to the World Health Organisation, (WHO) palliative care is defined as an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with a life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial, or spiritual.
Palliative care is widely misunderstood by people across the globe. Some people have never even heard about it. This is especially concerning when a friend or family member may need to access palliative care and you are not aware that help is available for them. Others have heard about it but they have some rough idea of what it entails or they could be misinformed.
The vast majority of people who understand palliative care are doctors, nurses, and medical practitioners who serve patients under palliative care. For the civilians, knowledge on palliative care may come to them when they are affected. For instance, if a loved one is or has undergone palliative care.
Here are some common myths concerning palliative care.
- Palliative care is only for people dying of cancer.
The path of a progressive illness, such as incurable cancer, can often be anticipated. It’s usually clear when it’s time to focus mainly on comfort. At this point, a person’s condition appears to be declining steadily and the ability to function independently becomes a challenge. With a chronic condition, or when someone has several medical problems but no specific terminal diagnosis, it’s harder to recognize terminal stages.
In the early stages, palliative measures such as pain control may be only a small part of overall care. As the illness progresses, some previously reversible problems become irreversible, or the burden of treatment outweighs its benefits. Then the focus of care turns increasingly toward comfort.
Increasingly, palliative care advocates promote a combined approach to care for patients with life-threatening illnesses. This means that palliative care provides comfort even while a disease is being treated. Advocates believe this approach helps people make more informed decisions about their care.
- Palliative care is only provided in a hospital
Palliative care can be provided wherever the patient lives – home, long-term care facility, hospice, or hospital.
“People often believe that palliative care is only provided in hospitals and hospices, and only for people who are approaching the end of their life. However, I would like to say that one of the biggest benefits of palliative care is that it can be provided in your own home where you feel most comfortable.” Dr. Zipporah Ali – Executive Director (KEHPCA)
Palliative care focuses on the concerns of patients and their families. This ensures that care is respectful and supportive of patient dignity.
- Taking pain medications in palliative care leads to addiction
That fear and myth have remained constant over the years. Keeping people comfortable often requires increased doses of pain medication. The ethical priority is to free patients from pain. As you increase the dosage of medication, people adapt to it. The dosage doesn’t kill the patients, it is the underlying disease.
- Pain is part of dying
It is common with most serious illnesses to have at least some pain. It is one of the ways that your body lets you know that there is a problem. The good news is that for the most part, pain can be controlled.
Pain is not always a part of dying. If pain is experienced near the end of life, there are many ways it can be alleviated.
- Palliative care means my doctor has given up and there is no hope for me
If you are dealing with a life-threatening illness, you’ll face many decisions, and not just about tests and treatments. You may, for instance, be deciding whether to stay at home or move to a hospital or how to approach challenges with eating and drinking.
Palliative care ensures the best quality of life for those who have been diagnosed with any life-threatening illness. Hope becomes more centred around living life as fully as possible, despite there being no cure.