Palliative care? But I’m not dying

For many people, accessing effective palliative care will mean the ability to live longer and to experience each moment of their lives more fully as a result of effective pain and symptom management, and holistic assessment of physical, psychological, social, emotional and spiritual needs. But many misunderstand it, or can’t afford it.

Palliative care has had a bad rap. It’s often underutilised because of the lack of understanding of what it is. Patients panic when they hear “palliative care” and think it means they are dying. But palliative care isn’t only for people who have a few weeks left to live.

This is a daily discussion palliative care doctors have with patients and families dealing with a life-limiting illness. Palliative care should be part of the treatment plan from the time of diagnosis of an illness through end of life and hospice care if required. And that may be years in some cases.

What is it, really?

Palliative care is for any patient with a serious illness who is experiencing a decreased quality of life because of symptoms related to their illness, like pain, or treatment, like chemotherapy. And it’s important to remember that palliative care doesn’t stand in opposition to curative or disease-directed care; the two often co-exist side-by-side with the balance shifting over time. Hospice care is only for patients who are no longer receiving curative treatments for their illnesses, and want to focus only on quality of life. Hospice is a type of palliative care.

The symptoms may include pain, fatigue, anxiety, or nausea. The symptom could be, “I am too tired to play with my grandson”, or “I am too nauseous to go on a family trip”

So palliative care is like an umbrella, where the focus is on symptom control to get you through treatments, advance care planning, and quality of life. Hospice and end-of-life care fall under the umbrella when the focus of care changes.

Does everyone get it when they need it?

Unfortunately, because of the misunderstanding, many patients with serious illnesses never even know palliative care is an appropriate option. Unfortunately, many can’t afford it because it not covered by many medical aids, and the few that do, typically offer the benefit only once curative treatment has been stopped. 

Life-limiting illness can cause many symptoms, as can the treatments, and they can have a negative impact on quality of life. The symptoms may include pain, fatigue, anxiety, or nausea. The symptom could be, “I am too tired to play with my grandson”, or “I am too nauseous to go on a family trip”. Palliative care is there to look at the patients and their family as a whole and see how it can help improve everyone’s quality of life.

Another important role of palliative care is to discuss advance care planning. Advance care planning can clarify what your wishes are if an illness is terminal or in the case of an accident where you can no longer speak for yourself. Everyone should have an advance directive to help guide the decision making of their doctors and loved ones. Advance care planning can also include discussing your disease process and prognosis, meaning, what to expect as your disease gets worse over time. Whether you are going to live months or years, it is important to understand your disease process. It will help you and those around you be prepared for the future.

So, is it expensive?

The misunderstanding of what palliative care is and what it’s for, places a large burden not only on patients, but on society. Most healthcare Rands are spent during a patient’s final three months of life, often because palliative care and advance care planning were never discussed.

The results were astounding – patients made dramatically different choices, costs came down and both the patient and their families reported higher levels of satisfaction.

Most patients indicate a wish to die at home, but in the South African private sector they are more likely to die in an intensive care or high care unit, frequently receiving aggressive, invasive and non-beneficial care. The consequence for funders is the high cost of care at the end of life. It’s estimated that the medical scheme industry will spend more than R20 billion in 2021 on patients in the last year of life. In his book, Being Mortal, surgeon and writer, Atul Gawande, talks about hospital-centric and aggressive treatment options at the end of life as a symptom of modern medical philosophy.

There is little financial incentive or pressure for doctors to consider alternatives. A key moment in Gawande’s book is a discussion of a study where patients with complex and high-risk diagnoses had a consultation with a palliative specialist. The results were astounding – patients made dramatically different choices, costs came down and both the patient and their families reported higher levels of satisfaction.

How can we all get it?

We’d do well to remember that to ensure the best care and comfort is available to all, effective palliative care must be mainstreamed into South Africa’s healthcare system – both public and private. And the most powerful way to do that is for patients to ask for alternatives.

Take a look around our website to find more about access to palliative care.