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Palliative care South Africa

My Experience Caring for My Friend with Advanced Cancer

My Experience Caring for My Friend with Advanced Cancer

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I’ve known *James for several years from work. He doesn’t have a close relationship with his family, and there aren’t many people he could call close friends either. When his cancer got worse, he asked me to be his proxy. I didn’t fully understand what that meant, but I said yes. After his last hospital stay, it was clear that James needed constant care, so I invited him to stay with me for a while.

The Challenges of Being a Caregiver with No Experience

Caring for James was a huge challenge, especially since I had no experience. The first thing I struggled with was my physical strength—James was much bigger than me, and I was worried about how I’d manage to lift him if needed. It was also tough to balance giving him dignity while handling his intimate needs. I learned that I had to respect his choices, especially when it came to things like eating. I could only encourage him so much before I had to step back and let him make his own decisions. Balancing work and caregiving was another big challenge, one I hadn’t anticipated.

How I Took Care of Myself While Caring for Someone with Medical Needs

I was fortunate to have an incredible support system. My partner was very understanding and stepped in to help with James when I was too busy or too tired. We also had the help of a home-based care team. They came in regularly to check on James’s physical and emotional well-being and offered me a lot of guidance. Their support made it easier to handle the little things that were keeping me up at night, like worrying about his oxygen nasal prongs falling out. It sounds small, but they even suggested taping the prongs to his cheeks, which helped me sleep a bit easier. Having this support made my life as a caregiver much more manageable.

Here’s the Advice I Would Share with Those Considering Caregiving

I know that for some people, caregiving isn’t a choice but a necessity. For those who find themselves in this position, I encourage you to seek help from local agencies like home-based care and build a good support system around you.

If you’re thinking about taking on the role of a caregiver, I would say take time to fully understand what you’re committing to. I didn’t realise how physically and emotionally demanding it would be. I also didn’t realise how much help I’d need. It’s easy to think that feeding someone or helping them to the toilet is straightforward, but it’s so much more than that. The person’s health condition at the time also greatly impacts your role as a caregiver. Whatever your situation, don’t hesitate to reach out for help and build a network of support. It makes all the difference.

Pippa Hudson palliative care

Pippa Hudson in conversation about Palliative care

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During Lunch with Pippa Hudson on Cape Talk 567, in her Family Matters slot, Pippa discusses the importance of palliative care.

In conversation with Dr Margie Venter, a palliative care doctor and secretary of PALPRAC, they chat about what palliative care is, who might benefit from it and how the pandemic has releaved the gaps in palliative care services in South Africa.


Listen here

Palliative Care South Africa

Palliative care access remains a problem, also in the South African private healthcare sector.

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Patients and their families facing serious illnesses often have to go it alone, and should be offered an extra layer of skilled, medical support called PALLIATIVE CARE. This should be the norm, from the time of diagnosis. This is not happening in the private healthcare sector. Why not and is there a solution?

As companions in care, palliative care teams are experts at helping with control of pain and other distressing symptoms, complex medical decision-making and offer emotional and spiritual support. However, most patients are not afforded the opportunity to have a palliative care team joining them on their journey with serious illness, even in the private sector. As it stands, patients are lucky to be receiving two weeks of care at home by a trained carer. Most, when their symptoms are uncontrolled or their condition deteriorates, need to go back into hospital. This is usually not the preferred choice of patients and families.

Advocacy for palliative care is growing globally, but medical schemes remain slow to act. The National Policy Framework and Strategy on Palliative Care was signed in South Africa in 2017. In the foreword of the document, Dr S.M. Dhlomo MEC for Health KwaZulu-Natal, states: “The World Health Assembly (WHA) Resolution reminds us that integrated palliative care is a basic human right, and that this right has been violated in our country, and in many low- and middle-income countries through neglect of palliative care as an integral part of the continuum of care.”

This policy, along with the fact the palliative care is considered part of Universal Health Coverage and is in the process of becoming a Prescribed Minimum Benefit (PMB) level of care in South Africa, implies that medical schemes can no longer shy away from reimbursing palliative care to patients with serious illness. They can also not expect providers to carry the burden of these costs. Robust, quality palliative care teams will only be established if they are financially sustainable. Schemes stand to benefit as patients are mostly able to be cared for at home, avoiding unnecessary and costly hospitalisations.

The way medical schemes reimburse palliative care providers for their services (if at all) remains one of the key barriers to palliative care access. In essence schemes pay a set rate for every consultation. This is called ‘fee-for-service’. This rate per consultation is typically very low,  and does not take into account the long duration or complexity of such consultations. In addition, a lot of what these teams do is hold the space for patients and families: being available when there is a need, coordinating care by talking to other team members or doctors involved in the patient’s care, checking in proactively via whatsapp and so on. This is not time that can be billed for. And so, as a palliative care doctor is not seeing 4 or 5 patients an hour in their surgery, this way of reimbursement makes it virtually impossible for sustainable palliative care teams to exist.

PALPRAC has collaborated closely with an innovative new managed care organization, Alignd, to rethink this stalemate in our system and come up with something new. Alignd shares PALPRAC’s vision in  improved access to optimal palliative care in South Africa. They do this by offering a comprehensive value-based business solution to medical schemes, called Alignd.Palliative. This product unlocks the financial gridlock for palliative care. A targeted palliative care benefit has been designed, based on international best practice, PALPRAC’s experience with their patients and Alignd’s expertise. Along with the benefit design, a value-based payment mechanism for formally trained palliative care multi-disciplinary teams has been established. This would mean that while healthcare providers are supported financially in delivering the service, patients are supported and empowered and costs are reduced without compromising quality.

Value-based care is concerned with the overarching goal of value for a patient. Under value-based care, incentives are aligned with outcomes. Healthcare providers are rewarded for helping patients improve their quality of life in an evidence-based way. Value-based care differs from a fee-for-service approach, in which providers are paid based on the amount of healthcare services they deliver. The “value” in value-based healthcare is derived from measuring health outcomes against the cost of delivering the outcomes.

Watch the video to find out more about value-based care, Alignd and their partners (including Palprac).

In this way, the Alignd.Palliative benefit is a seamless ‘plug and play’ solution for medical schemes. It will achieve the goals of quality palliative care to the patient, value to the medical scheme and sustainability to the provider. 

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 send us an email at info@palprac.org with your story. Patients and family’s voices are urgently needed to help shift the status quo.

Palliative care South Africa mental health Covid

Health care worker mental distress: there is help!

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At the start of the COVID 19 epidemic in South Africa I was ready to work wherever a palliative doctor was needed. However, as I started to understand more about the groups at risk of doing badly if infected, I had to have a rethink. I am 65 and feel perfectly healthy but  have several risk factors in addition to age. The prospect of having a conversation with my work colleagues about what to decide caused great anxiety and the term moral distress applied to what I was struggling with.

An email came from Medical Brief announcing help for health care workers struggling with the impact of the pandemic on their mental health. Was it fair to ask for this support when I wasn’t at the clinical coal face?

I sent the application for a psychologist to contact me. Very soon, I had a reply and the offer of up to 4 zoom consultations. I have had a really helpful and professional therapist and the semi anonymity of Zoom has been a positive for me.

There are two contradictory messages for health care workers: either “put on your own oxygen mask first”, stay at home if you are at high risk or the health worker hero who is not daunted by fear. The moral distress of facing these choices has not gone away, but I have been helped to live with my decision.

I encourage all health care workers who are facing their own distress during the pandemic to recognise when they need help and to ask for it. There are very supportive and professional people willing and able to help.

My sincere thanks to the organisations and to the psychologists who have volunteered their professional services.

Dr Janet Stanford, Knysna Hospice

 

Mental Health Support for Healthcare Workers

Dear Colleagues

Last week a communication was sent out, which requested volunteers to sign up to provide mental health support via the Healthcare Workers Care Network (HWCN). This programme is a collaboration of the South African Medical Association (SAMA), The South African Depression and Anxiety Group (SADAG), The South African Society of Psychiatrists (SASOP), The South African Society of Anaesthetics) and The Psychology Society of South Africa (PsySSA). 

The purpose of this programme is to provide mental health support to all healthcare professionals requiring care during this challenging time.

Should you require such support, please register here