You can start palliative care at any stage of a serious illness, even as soon as you receive a diagnosis and begin treatment. In fact, says palliative care trained doctor and co-founder of Alignd, Linda Holding, the earlier you access this extra layer of specialised care and support, the better for you and your family.
Imagine there was specialised care and support for people with serious cancer. I’m not talking about disease-directed care – oncologists skilfully take care of that. I’m talking about expert, empathic care with an overarching goal of improving the quality of life of both the patient and the family… The kind of care and support that focuses on providing relief from the symptoms such as severe pain, and stress of living with a serious illness.
In fact, there is such care and support available. And it’s provided by an expert team, which could include doctors, nurses, social workers and spiritual counsellors. These practitioners have extra palliative care training, which means they are adept in making patients’ illness journeys easier from the moment they are diagnosed, ideally with a focus on getting them back on their feet again. What makes this team special is that they will consider and coordinate all aspects of your health and wellbeing, and not just your cancer.
One of the big strengths of palliative care is recognition of the human side of illness. Palliative care patients cite benefits such as: “being recognised as a person,” and “having a choice and being in control,”
Some people feel nervous when they hear the word “palliative”, but accepting this kind of care does not mean you are dying, and it does not mean you are giving up. In fact, anxiety, depression, fatigue and pain can set in at the beginning of treatment – palliative care trained practitioners understand the stresses that patients and their families face and can help them to cope. With better all-round care, good symptom management, and a comprehensive and holistic home-based care plan in place, patients are not only able to carry on their daily life, but also better able to undergo or complete their medical treatments.
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. You can receive it along with the care you get from your oncologist or GP.
Support from WHO
According to the World Health Organisation (WHO) definition of palliative care, it “is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy”. In other words, it should be part of a treatment plan from the time of diagnosis of a serious cancer – that’s when it’s most effective.
In a 2010 landmark study, published in the New England Journal of Medicine, among patients with metastatic lung cancer, early palliative care led to significant improvements in quality of life and mood, and they lived longer, despite choosing not to receive aggressive treatment at the end of life. A number of studies and trials since then have further shown how combining palliative care and disease-directed care early in the illness improves outcomes in patients with advanced cancer.
Yet for too many patients, palliative care referral happens too late to improve quality of life. Many healthcare practitioners still struggle with messaging when it comes to palliative care. Patients, and sometimes practitioners, mistakenly view it as the same as end-of-life care or hospice. Among the studied stumbling blocks to palliative care are doctor and patient resistance, the latter often as a result of unrealistic expectations of patients and their families. Of course, both doctors and patients want to reduce suffering and prolong life. The irony is that early palliative care referral has been shown to do just that.
One of the big strengths of palliative care is recognition of the human side of illness. Palliative care patients cite benefits such as: “being recognised as a person,” “having a choice and being in control,” “being connected to family and the world outside,” “being spiritually connected,” and “physical comfort and dignity”.
Ask for an early referral
Patients with advanced cancer shouldn’t hesitate to welcome a consultation with a palliative care team, and should ask their GP or oncologist for a referral. Even doctors may not think of palliative care right away so patients may need to be proactive too.
As the WHO states, “All people have a right to receive high-quality palliative care during serious illness…”.
Good to know
Alignd is currently partnered with Fedhealth and Bonitas medical schemes. To contract with us or find out more, email info@alignd.co.za. To become part of the Alignd network of palliative care doctors and practitioners you can find out more here.
If you think palliative care might be something to consider for yourself or a loved one, or if you have struggled with access to palliative care, please also be in touch with us at info@alignd.co.za.
This opinion piece first appeared in the Mail & Guardian online, 18 August 2021
