COVID-19: Palliative care needed now more than ever
For mother of two, Ningi Mfeka from Amanzimtoti in Durban, looking after her terminally ill child has at times brought her to her knees but 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,” she says.
Mfeka’s son, Skhumbuzo, who is in Grade 8 suffers from a blood disorder called Fanconi Aplastic Anaemia. The condition, which is inherited, leads to the 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 that really understand his condition and they are patient,” she says.
It is in difficult times such as this, when palliative care services are invaluable in caring and supporting families and people 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 and 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 always be protected,” she says.
Mfeka’s son is a patient of Dr Julia Ambler, a palliative care doctor who is the co-founder of 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, CEO of Paedspal and a paediatric palliative care consultant, agrees that palliative care is often misunderstood. “Even some doctors associate it with dying. Be all and end all. 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. “Though 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 COVID-19 pandemic has highlighted the glaring gaps in palliative care services.
“Palliative care services are associated with hospices. Very few hospitals have palliative care doctors but now with COVID-19 we are seeing the need of 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 make people understand the need of palliative care and what it is,” she says.
“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. Now when you speak you have to speak very slowly. For me I enjoy being able to spend time with people and listening 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 importance of palliative care, the need to integrate it into all pandemics and the need to develop guidelines especially for vulnerable groups, came under the spotlight.
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 COVID-19.
“They need help from carers who use public transport and this increases their risk of [contracting] COVID-19. Another challenge is information not being available in braille or sign language. There is a need for more training. People with disabilities are often excluded from or feel unwelcome in faith communities. Disability is seen as a result of sin. Disability is something that should be healed and most facilities are in accessible. People with disabilities can flourish,” she says.
Ambler believes COVID-19, to a certain extent, has been good for 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 other life-threatening conditions are sitting at home too scared to get into 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 that 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 through a process of having to find and connect a social worker to the patient’s family on the phone. I sat in with young doctors who admitted that in all honesty trying to connect the patient, social worker and family all together and filling in all the paper work 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 now, I think, is the logistics of it because of COVID-19. Not everyone can get into a COVID-19 ward and also hospitals can’t have too many people as there will be a huge risk of infection. Also, as much as they want to help, their safety of not contracting the virus is not guaranteed. So, these are challenges that need to be dealt with yet people sit in desperate need of palliative care,” she says.
Cunningham says it is simple issues like PPEs and social distancing that have complicated palliative care and they all have to go back to the drawing board and see how they can improve. She however 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 that wearing PPE create.
Meiring says counselling with a mask is terrible. “Sometimes, there is difficulty in hearing and 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 now 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 to tablets and now support patients remotely.
Ambler says communication is the cornerstone of what they do and one challenge that COVID-19 has brought, is how to keep a patient in touch with their family.
“In some hospitals, staff members are using their data to do WhatsApp call so that the families can see their loved ones. It is 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 sanitized after every use to avoid transmission,” she says.
Cunningham applauds the Western Cape Department of Health for being pro-active 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 but adds telemedicine has also helped a lot of patients and it has made a massive difference.
“Often decisions are made when it’s too late, 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 the current difficulties. “We can’t hug and comfort our patients anymore. 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/she is in pain, is the child ok and see what we can recommend for the parents. Now we check on families and patients on devices,” she says, adding that they had to stop home visits completely.
“Now they have to come out and you can’t really have in-depth conversations outside,” says Meiring. “People are scared as there is a risk at hospitals and at the clinic. Even those who do home visits might be a huge risk,” she says.
Her team does a lot of work with siblings. “When there is a terminally ill child in a family, all the attention goes to 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 someone talks to them about what is going on,” she says explaining that a few paediatric patients have had COVID-19 but now they are dealing with a lot of bereavement as children have lost parents and grandparents to COVID-19.
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. Healthcare professionals share concerns and experiences of palliative care during COVID-19.
Venter says COVID-19 has taught them (healthcare professionals) that everyone should be able to offer basic palliative care. Everyone must have some form of understanding and skills in palliative care,” she says.
According to Ambler “we are definitely not training the numbers that we should to support families through palliative care”.
The Western Cape Health Department earlier in May this year 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 Western Cape 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 that includes bereavement support.