Because your days matter

Dr Margie Venter highlights why World Hospice and Palliative Care Day is so important because your days matter.

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Nearly every day on the calendar is dedicated to something. Cancer awareness days, in particular, have  played an important role in shaping awareness, education, and funding.

World Hospice and Palliative Care Day is on 10 October, and palliative care really does need its day.

I’ve been mulling over what to write for weeks. Palliative care still carries such a negative connotation. For many people, the words suggest giving up hope, dying, or those last few days of life. Most people would rather not know too much about it until they absolutely have to.

Which is precisely why it needs a day: to bring it out of the shadows. Because, really, palliative care is about living and helping people live with as much quality as possible.

I’ve also been wondering which of my hats I should wear while writing this. The family member hat, having loved someone with advanced cancer who needed palliative care when I was still a junior doctor? The ex-oncologist-now-palliative-care-doctor hat? Or my palliative care advocacy hat?

The advocacy hat is probably the right one. It sounds rather grand and conjures up images of legal experts in impressive regalia.

Other hats matter too

As a family member, my message is very simple: Don’t delay. Ask for palliative care. You don’t know what you don’t know. We certainly didn’t.

As a palliative care doctor, I would add something else: your oncology team may need you to ask. Oncologists can find it difficult to introduce palliative care because they know what many patients hear when the words are mentioned: They have given up on me. That is not what is meant.

Cancer treatment requires enormous focus from your oncology team. Palliative care adds another team whose particular focus is you: your pain, symptoms, worries, function, family, difficult decisions, and quality of life while all that cancer treatment is happening.

For me, there are few things more satisfying in medicine than helping somebody get their pain under control. Pain can swallow an entire day. Relieving it can give that day back.

Pain management

Appropriately, the theme for World Hospice and Palliative Care Day this year is Pain Management: An Essential Part of Palliative Care. And this is where I put the advocacy hat firmly on.

I feel strongly enough about palliative care that I spend about half of my professional life trying to make sure it becomes part of ordinary healthcare for people living with serious illness. I have seen what a difference it can make to the journey of a patient and family.

Palliative care isn’t a luxury or a nice extra. Access to palliative care is recognised as a human right, the right to the highest attainable standard of physical and mental health. That includes access to pain relief, medicines to manage other distressing symptoms, and healthcare professionals who know how to provide this care.

The World Health Organization puts it rather clearly, “Palliative care is a crucial part of integrated, people-centred health services. Relieving serious health-related suffering, be it physical, psychological, social, or spiritual, is a global ethical responsibility.”

So yes, you can ask for it. And you should.

Private vs public

If you belong to a medical scheme, ask what palliative care benefit is available to you. Patients living with serious illness should have access to appropriately trained palliative care professionals and the medicines needed for symptom relief. Ideally, this care shouldn’t require additional co-payments, nor should its costs simply eat away at the oncology benefit intended to treat the cancer.

Some South African medical schemes have made important progress in this area. Others still have work to do.

If your scheme doesn’t provide adequate palliative care cover, please ask questions. Engage with them. And tell us at the Association of Palliative Care Practitioners of South Africa (PALPRAC). Patient stories help us advocate for change, because it’s much harder to ignore a gap in healthcare when we  can show what that gap means to a real person and family.

The same is true in the public sector. If you receive your oncology care through a state hospital, ask whether there is a palliative care service attached to the oncology unit or hospital. Access remains very uneven across South Africa, and in many areas much of this support is still provided by local hospices. If that is what is available, ask for a referral.

Broader work needs to be done

 South Africa’s National Palliative Care Policy and Strategy is currently being reviewed, after the previous policy lapsed in 2022. Most importantly, once finalised, it needs to be implemented. Healthcare professionals can advocate for that, but civil society matters enormously too. Patients and families asking, Why is this care not available here? can be powerful.

Which brings me back to hats.

Children need palliative care too. Every year, the paediatric palliative care community runs the Hats On 4 Children’s Palliative Care campaign. On Friday, 9 October, people are encouraged to wear a hat to work, school, or wherever they happen to be, to raise awareness of the children and families who need this kind of support.

So, perhaps there is something useful about having a day after all. World Hospice and Palliative Care Day gives us an excuse to talk about something we often avoid talking about. And if you are living with cancer, perhaps this is the most important thing I can leave you with: palliative care is there to help you live as well as possible while you are living with serious illness. You don’t need to wait until things are desperate. Ask early. Your day matters.

Dr Margie Venter is an oncologist and palliative care doctor based in Stellenbosch, Western Cape. She is the Clinical Director of  PALPRAC, the Association of Palliative Care Practitioners of South Africa, an organisation that provides national leadership and advocacy for the equitable provision of palliative care to all South Africans.

Header image by Magnific