For Ningi Mfeka from Amanzimtoti outside Durban, looking after her one terminally ill child has, at times, brought her to her knees. However, the help of palliative care doctors has been her saving grace, she says.
“The load has been made very light. They constantly call me and check on my son. They ensure that we always go for my son’s appointment and just continue to be there and support us,” the mother of two says.
Mfeka’s son, Skhumbuzo, is in Grade 8 and suffers from a rare genetic disorder called Fanconi anaemia. The condition causes a reduction in the production of all types of blood cells.
“I can’t talk to my son about his condition. I can’t tell him that his disease is incurable and it will eventually lead to his death. I cry each time we have to talk about it, so I don’t do it. It is not easy, days are not the same.
“We are in and out of hospital, but I’m glad that the doctors are able to talk to him and make him understand his condition. When he is with them, he opens up to them. It feels better because he talks to people who really understand his condition and they are patient,” she says.
It is in times such as these that palliative care is invaluable in caring for and supporting families and patients suffering from life-threatening diseases.
Skhumbuzo goes to Inkosi Albert Luthuli Hospital every three weeks for blood transfusions.
“Since he was born, he was a sickly child,” Mfeka says. “He always had a cold, and he was always tired. He was always bleeding from his gums and nose. The doctors couldn’t tell us what was wrong… they just couldn’t diagnose until 2016. The disease is incurable.
“This is a struggle but we try. I’m really grateful for the support I get from my family and the doctors.”
For Mfeka, Covid-19 has brought so much anxiety, especially when they have to go to the hospital.
“We use public transport and my fear is [that when] we are going to and from the hospital, we get the virus. My son is already ill and having the virus will be a big challenge for us. Even going to the hospital has become a scary process because we know that is where the virus is. I’m always scared, but we trust God that we will be protected,” she says.
Mfeka’s son is a patient of Dr Julia Ambler, a palliative care doctor who co-founded the Umduduzi-Hospice Care for Children. Ambler provides paediatric palliative care to children in about 11 hospitals in KwaZulu-Natal.
“Most people, even some doctors, confuse it [palliative care] with the end of life, and because of this, there is so much stigma associated with palliative care. Some believe getting palliative care help is giving up. They don’t know when exactly to call for help,” she says.
Dr Michelle Meiring, a paediatric palliative care consultant and CEO of Paedspal, agrees that palliative care is often misunderstood.
“Even some doctors associate it with dying. That is not the case… this is a team effort from doctors, social workers, caregivers, spiritual leaders, among others. The aim is to give holistic care. Assist the family emotionally, physically and even spiritually,” she says.
Impact of Covid-19
Meiring says lockdown had a huge impact on the services they offer. “Although we carried on during lockdown, as we are an essential service, we had to close the clinic and postpone non-urgent appointments.”
Dr Margie Venter, a palliative oncologist in Stellenbosch, says the pandemic has highlighted glaring gaps in palliative care services.
“Palliative care services are associated with hospices. Very few hospitals have a palliative care doctor, but now with Covid-19 we are seeing the need for a palliative care team at a hospital.
“These are some of the things that have to be improved on. There is no magic way – step by step we try to make people understand the need for palliative care and what it is,” she says.
“[Wearing] PPE has made it extremely difficult. Now we have to write names on gowns for identification. With masks on, hearing is difficult, especially for the elderly. When you speak, you have to speak very slowly. For me, I enjoy being able to spend time with people and listen to stories that people tell. Just listening to how people see life. Covid-19 is taking that away from most of us. I think this PPE business is very hard,” says Venter.
On a webinar hosted by Worldwide Hospice Palliative Care Alliance on 4 June, titled Palliative Care in Covid-19 for Persons with Disabilities and in Humanitarian Crises, the spotlight was on the importance of palliative care, the need to integrate it into all pandemics, and the need to develop guidelines, especially for vulnerable groups.
Dr Annemarie Oberholzer, a research fellow at Unisa and co-founder of the Organisation for Paediatric Support in South Africa, said people living with disabilities are at high risk of contracting Covid-19.
“They need help from carers who use public transport and this increases their risk of [infection]. Another challenge is that information is not available in Braille or sign language. There is a need for more training.
Ambler believes Covid-19 has, to a certain extent, had a beneficial impact on palliative care. “Doctors are realising that we will have large numbers of people needing curative care. Some will not get a ventilator as there is a shortage… Some don’t want ventilators, and palliative care specialists will be able to navigate this and work with the patient. Some doctors have asked for training on palliative care to help the patients,” she says.
There is also a downside, Ambler says, as patients with life-threatening conditions are too afraid to leave their homes and use public transport.
“Patients with different kinds of illnesses, who fit the criteria for palliative care and [who] are vulnerable, are not coming to us for help. They are worried that because of their condition, they can potentially become more ill, and because of this there are patients we are supposed to be helping but [who] are not coming to the hospital,” she says.
Dr Jayne Cunningham, from Helderberg Somerset West, says the medical side of palliative care for Covid-19 is not very complex.
“What is complex is the whole psycho-social impact. This is what I’m finding to be the most difficult. For us palliative trained doctors, it’s about long conversations and a safe space to talk. We show our body language, bring a person closer and comfort them.
“But with PPE it is extremely difficult because patients can’t see your face, they can’t see you smile. There is no body language, there is also that touch for reassurance that is missing. Patients are looking for that physical contact but PPE has taken it all away. It is hard,” she says.
“Not to say that doctors don’t care, but they are very busy with Covid-19 patients. They have to see who needs oxygen, who needs a ventilator, and some (doctors) have admitted there is no time to sit on the phone and go through a process of finding and connecting a social worker to the patient’s family.
“I sat in with young doctors who admitted, in all honesty, that trying to connect the patient, social worker and family together – and filling in all the paperwork – is just more work that they don’t have time for,” she says.
According to Cunningham, there are people who want to help provide palliative care services. “However, the problem is the logistics of it, because of Covid-19. Not everyone can get into a Covid ward, and also hospitals can’t have too many people around as there will be a huge risk of infection. Also, as much as they want to help, there’s no guarantee that they won’t contract the virus. So these are challenges that need to be dealt with… yet people sit in desperate need of palliative care,” she says.
Cunningham says basic issues like PPE and physical distancing have complicated palliative care, and they need to go back to the drawing board and see how they can improve. She applauds the Palliative Care Association of South Africa (Palprac) for putting guidelines in place for adult palliative care during Covid-19 that are helping health professionals.
Ambler and Meiring agree on the difficulties created by the wearing of PPE. Meiring says counselling with a mask is terrible. “Sometimes there is difficulty in hearing or expressing yourself clearly. There is no connection.
“Covid-19 has been a disaster, but a manageable one. Before patients come for their appointments, we have to do the screening over the phone. If the patient answered yes to most of the questions, we assess if they should be sent for testing,” she says.
Telemedicine and communication
Covid-19 has enhanced the use of telemedicine. Many palliative care specialists had to move consultations on-line, and now support patients remotely.
Ambler says communication is the cornerstone of what they do, and one challenge of Covid-19 is how to keep a patient in touch with their family.
“In some hospitals, staff use their data to do WhatsApp calls so families can see their loved ones. There’s a little bit of trial and error. The aim is to ensure that every ward has its own device, with a wipeable pouch, so that it can be sanitised after every use to avoid transmission,” she says.
Cunningham applauds the Western Cape Department of Health for being proactive and providing devices for communication.
“We have had phones to help connect patients with their families. That has helped a little, but now the challenge is that the hospital might have the device but families don’t have data. So the connection is lost easily, or they can’t even connect at all,” she says, adding that telemedicine has helped a lot of patients and has made a big difference.
Venter agrees. “Often decisions are made when it’s too late… it’s tenuous, stressful and options are running out. After there has been a diagnosis, we help the family and the patient understand what this means and help them make sense of things quickly. Now, with Covid-19, that’s a little difficult, but telemedicine is solving some of the issues. I saw this at Stellenbosch Hospital, where a patient was connected to his family over a tablet. They said their goodbyes and [the patient] passed away the next day,” she says.
Meiring also reflects on current difficulties. “We can’t hug and comfort our patients any more. Now we have to ask parents to send us a video so that we see the child. Through the video we check if the child looks like he or she is in pain… then see what we can recommend for the parents. We check on families and patients on devices,” she says, adding that they have had to stop home visits completely.
Her team does a lot of work with siblings. “When there is a terminally ill child in a family, all the attention is on that child. Other siblings are ignored and that stresses them and they act out.
“Communication here plays a big role as the siblings have to be counselled and spoken to about what is going on,” she says, explaining that a few paediatric patients have had Covid-19. However, they are also dealing with a lot of bereavement as children have lost parents and grandparents to the virus.
Training healthcare providers
With Covid-19 making the need for palliative care more apparent, Palprac hosts bi-weekly Zoom PalliCovid Conversations on Tuesdays and Thursdays from 16:00 to 17:00 for healthcare professionals.
In these ‘meetings’, healthcare professionals share experiences of palliative care during the pandemic.
Venter says Covid-19 has taught healthcare professionals that everyone should be able to offer basic palliative care: “Everyone must have some form of understanding and skills in palliative care.”
According to Ambler, “We are definitely not training the numbers that we should to support families through palliative care.”
In May, the Western Cape health department published its palliative care position statement for the province’s Covid-19 response. According to the document, 133 professionals have been trained in palliative care since the national policy framework and strategy for palliative care was launched in the province in October 2018. This, the document states, “has helped to prepare for the palliative care burden that comes with Covid-19”.
The document also sets out the percentage of beds available for palliative care and end-of-life patients, and the available emotional and spiritual care which includes bereavement support. DM/MC
"We are afraid to care too much for fear that the other person does not care at all." ~ Eleanor Roosevelt