OPINION: Palliative care? But I’m not dying

  • Palliative care isn't only for people who are dying
  • It is for any patient experiencing a decreased quality of life because of symptoms related to their illness
  • Palliative care as an effective alternative needs to be mainstreamed into South Africa’s healthcare system, both public and private

Palliative care has had a bad rap and is often underutilised because of a lack of understanding. 

Patients panic when they hear “palliative care” and think it means they are dying. But palliative care isn’t only for people who are "on their way out".

Palliative care should be part of the treatment plan of a patient from the time of diagnosis to their eventual demise. And that may be years in some cases. It is for any patient with a serious illness who is experiencing a decreased quality of life because of symptoms related to their illness, including pain, or treatments like chemotherapy.

It’s also important to remember that palliative care doesn’t exclude curative or disease-directed care; the two often co-exist side-by-side with the balance shifting over time.

Like an umbrella

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. Palliative care is, therefore, like an umbrella, where the focus is on symptom control, getting a patient 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. 

Unfortunately, because of this misunderstanding, many patients with serious illnesses aren't aware of palliative care as an appropriate option. Unfortunately, many people also 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 ended.  

Life-limiting illness can cause many symptoms, as can the treatments, and they can have a negative impact on quality of life. Symptoms may include pain, fatigue, anxiety and 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. This can clarify your wishes 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.

Aggressive, invasive and non-beneficial care

Whether you are going to live for months or years, it is important to understand your disease process. It will help you and those around you prepare for the future. The misunderstanding of the nature and reasons for palliative care places a large burden not only on patients, but on society as a whole.

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. 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 their 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.

Asking for alternatives

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. 

On this World Hospice & Palliative Care Day, we’d do well to ensure that the best care and comfort are available to all. Effective palliative care needs to 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.

Shivani Ranchod is a healthcare actuary and academic. She is also the co-founder of Alignd (alignd.co.za), a firm offering end-to-end, value-based financing solutions for the optimal management of complex patients, including palliative care.

Image credit: Supplied

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