It is late Friday afternoon and I just came back from the IDT (inter-disciplinary team) meeting. This is our new tradition, where we all gather: carers, doctors, nurses, social worker and all involved in Zazen and the Lodge, to be together and connect. I didn’t quite know where we were going to go with this meeting, but we were in Jodi’s hands on Friday and between you and me, I just looked forward to sitting down for a bit!
The past week was a rough one. We had three deaths (all Afrikaans women) in six days and emotionally, we were all a bit worse for wear. I think that when palliative teams gather, there is a similar feeling to gatherings of those who served together in combat. There is the same sense of camaraderie and a connection that binds you together because of what you’ve seen and because you have looked death in the eyes.
We started by lighting a candle for those we had lost and then, how flippin cool is this, we sat in silence with each other for five minutes. It sounds so silly (and yes boys, despite us being an all-female crew, we managed the silence rather well I’d say) but it is quite remarkable how you just gather yourself in those moments, listening to the birds and the traffic and allowing your mind to wonder. Then went around the circle and shared what was good about the week and what we would have changed if we could.
I looked at this group of women, of vastly different educations, backgrounds, races and beliefs, and I was filled with wonder. Each of us had a different journey that has brought us to this work we do, and I knew that the fact that we’ve all arrived in this space is no co-incidence. This work is overwhelming, not just because death is profoundly sacred, but because of the volatility of the loved ones and families, but yet here we sat, a diverse group with one goal, holding each other up.
In our tradition, we will have a weekly little teaching session from various people, and this week, Dr Jesne shared some understanding of pain control and how it is best to communicate in these situations – and we find ourselves in them often. (I loved her approach, and in fact applied her five step system to a sticky situation with a family member. It worked, and now because it is bulletproof, I will be using it everywhere. I can’t tell what it is because then you’ll know when I’m using it on you).
We broke up in pairs and allowed each other to talk without interrupting, sharing and opening up about what it is we hold. We gathered again and ended off, and I reflected on how lucky am I to do this work with these specific people.
This is what is really on my heart this week and why I am so excited to be collaborating with Zazen. While they were planning the future of their organisation they always said that what they want to provide is a beautiful setting where people could feel at home and where there would be beauty, gardens, sunshine, smells of coffee and sounds of birds. What I dreamed of was a team that would bring the clinical and academic aspects of palliative care to my entrepreneurship. And here, in the first week of being open, this is exactly what happened. Last Sunday we watched young kids playing Marco Polo in the pool. Their granny was just a few metres away in a lovely room, saying goodbye to her sister who had stage 4 cancer. Families gathered around tables eating KFC while, one at a time, they went to say goodbye to a gorgeous 48-year-old woman. The space we created was one of tranquility, where the families could simply feel their feelings, be there for each other, say their goodbyes and we could do the rest. We could do this because we didn’t just provide support and a homely space, but the clinical aspects were all dealt with carefully by the full team of doctor, nurse and social worker..
Our vision is to do this for everyone that needs it, not just for the insured and the wealthy, and so Jodi and Jesne came up with a way to make this possible.
We want South Africans to have choices for how they receive palliative care and to have an option to choose inpatient care, which is currently terribly limited in SA.
Okay, so now, we are quickly getting serious and here are some fascinating, albeit upsetting facts (but you probably live in SA, so you are not going to be surprised. We all know that looking after their people is not the ANC’s top priority – or any priority actually):
- Access to palliative care is severely limited in South Africa. It is currently not offered at all in the public health sector.
- To meet international standards, South Africa needs 4,000 specialised palliative care inpatient beds. We currently only have 400 (10%) and they are only available to those who can afford them.
- 500,000+ adults need palliative care services in South Africa each year.
- Only 200,000 are currently accessing the support they need. This leaves 300,000 without any palliative care support.
- Even the 200,000 who are receiving palliative care are not always able to choose how or where they receive this care, given the limited supply.
- 3,600 additional specialised palliative care inpatient beds are critically needed right now to support more choice and a more holistic palliative care service offering in South Africa
Closer to home, let’s look at Gauteng’s supply problem:
- 140,000 people in Gauteng need palliative care but only 60,000 people are receiving it.
- An estimated 30,000 people will need admission into an inpatient unit, but Gauteng only has enough specialised palliative care beds for 2,000 people.
- 28,000 people (93%) in Gauteng go without the inpatient palliative care they need.
You might ask, but what about the hospices? Most of them are funded by donations, which are, at best, unreliable. Staff often do not know if they will be paid and work under terrible stress. The truth is also that many hospices only accept medical aid patients, contrary to what we are lead to believe.
If you have followed the blog for some time, you will remember the beautiful death my dad had and how his loved ones were spared the trauma of caring for him at home under stressful circumstances, or having him placed in an impersonal clinical hospital for his final days. If you were to compare our experience with Jodi’s, it is chalk and cheese. Jodi ‘s story is totally different::
“My gran was staying with my aunt and uncle. They needed respite from the constant caregiving and finally decided to take a short break. During the time they were away, my gran landed up in hospital from an acute event, likely brought on by the sudden transition, and new caregivers who weren’t familiar with her needs. My gran was first in ICU, then high
care and finally in the medical ward, where she ultimately died, alone. If Zazen had been around, my family could have safely taken a much-needed break, knowing my gran would be well-cared for. A lot of my passion for Zazen and our work to provide more options for holistic and personalised palliative care have been borne out of my experience of my gran’s death.”
Zazen, a non-profit organisation, has the unique aim of being financially sustainable through a mixed-income model and thereby to increase access to inpatient palliative care.
Gauteng province has the highest ratio of medical scheme patients in the country, presenting a unique opportunity for a sustainable and equitable financing model for Zazen.
Zazen and the Hospitality Lodges will welcome insured and uninsured patients into our facility, and this will be funded through our medical aid patients plus donations.
- Zazen provides ‘inpatient’ (overnight) care at our beautiful lodge in Sunninghill.
- Zazen offers all its patients a full clinical team plus 24/7 carers and ‘hotel services’ through our partnership with Sunninghill Guest Lodge.
- Zazen is also a research hub for palliative care in South Africa, aiming to increasing the body of knowledge on palliative care for South Africa and other
We can also provide Section 18A certificate to donors.
So, if you feel inspired to give, here are the bank details:
Account: Zazen Respite Care NPC
Bank: FNB Account number:
63046005608
Branch Name: Constantia Kloof
Branch code: 260202
Swift code: FIRNZAJJ
Paypal: paypal.me/zazenrespite
There are also other ways you can help, including: And other ways you can help:
- Donate medical equipment. At the moment we need a new hospital bed.
- Sponsor a stay for someone who can’t afford it. After COVID many people have been unable to afford medical aid and the need is dire.
- Care for the carers: pamper our staff
- Donate to our garden of remembrance, where loved ones can mourn those who have passed away here.