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Siyayinqoba Beat It! 2005 Episode 2 –
Palliative Care
In this episode of Siyayinqoba Beat It, the support group looked at the pros and cons of both home based palliative care and palliative care at a Hospice. In order to get more insite the support group were joined by Seipati Ngobeni who helped nurse her HIV positive aunt back to health. Another studio guest, Dr Natalya Dinat, brought a professional perspective to the discussion.
Jason Wessenaar: Molweni siyanamukela kwi-Siyayinqoba Beat It! support group. {isiXhosa} [Hello and welcome to Siyayinqoba Beat It! support group.] My name is Jason and I’m part of Siyayinqoba, the support group for people living openly with HIV. Each week we get together to talk about issues that affect our lives with HIV and of course this includes our partners, family members, friends and colleagues. If you’re living with HIV or have a friend, a partner or a family member who’s HIV positive, this programme is for you. We often think of a hospice as a place where people go and die but since the introduction of ARVs, many terminally ill people who go to a hospice are recovering from opportunistic infections and live a positive lifestyle. This means that we need to change the way we think about a hospice. They are becoming a place where very sick people go and get the care they need and go home after they’ve recovered. To give us a clearer picture of how a hospice works, we are joined by Sister Gladys from Drakenstein Hospice. We are also joined by Seipati Ngobeni, a young woman who helped nurse her aunt back to health. Welcome to both of you. First let’s have a look at what we found when we visited the Drakenstein Hospice, a palliative care centre in Paarl.
Palliative Care
Paarl, Western Cape
Simphiwe Gude: Mna ndingu-Simphiwe Gude ifani, ndihlala kwa-2280 inombolo e-Chris Hani. Ndiyi-HIV advocate e-Hospice. Ngo-2000 ngo-June ndaye ndagula ndane-TB. So ndahamba ndathunyelwa ekliniki ndenza i-blood test kwafumaniseka into yoba ndi-HIV. So zange ndiyi-believe lonto. Ndathi ngenxa ndingakwazanga ukuyamkela, ndane-stroke. Ndandinga kwazi nohamba, neengalo zam ndingazisebenzisi, ndihamba nge-wheelchair for six months. Ndadibana no-Hospice ngolohlobo. 2002 ndaqalisa kwii-ARVs, ngoku ndinonyaka one-seven months ndikwii-ARVs. Kula six months yokuqala kwii-ARVs, ndatsho ndahamba kengoku ngelaxesha. Umahluko Ndiqale ukumbona kwii-ARVs. U-Noluthando ndidibene naye last year ku-April. Ndadibana naye pha kwa-Hospice esenza i-course ye-home based care khona. Ngoku i-aims esinazo, besineenjongo zoba ngo-December sitshate. {isiXhosa} [My name is Simphiwe Gude. I stay at number 2280 in Chris Hani township. I’m an advocate at the Paarl Hospice. In June 2000, if I remember correctly I fell ill and I suffered from TB. I went to the clinic, they did a blood test and I found out that I had HIV. I didn’t want to believe it and because I was in denial, I suffered a stroke. If I remember correctly, I couldn’t walk or use my hands. I was in a wheelchair for six months. That’s how I discovered the Paarl Hospice. In 2002, I started taking ARVs and I have been on ARVs for a year and seven months. Six months after starting ARVs, I could walk again. I saw the difference after starting on ARVs. I met Noluthando last year in April. I met her at the hospice where she was doing a home-based care course. One of our aims is to get married in December.]
Noluthando: Ndamxelela ukuba ndi-HIV positive ukudibana kwam naye. Kuwo wonke umntu o-HIV positive, ungangu sisi okanye ungangubhuti, makazame ngandlela zonke uba makakhululeke, aze ngaphambili, azichaze ebantwini azofimana uncedo. Ngoba iyancedakala khona ngoku kukho iipilisi ezizi-ARVs. Naxa khona zingayiphelisi kodwa ziyayithomalalisa. {isiXhosa} [When I met him I told him I’m HIV positive. Everyone who’s HIV positive whether it’s a woman or a man should try by all means to be free and disclose their status, so that they can get help because now we have ARVs. They are not a cure but they suppress the virus.]
Elizabeth Scrimgeour (CEO, Drakenstein Hospice, Paarl): My name is Elizabeth Scrimgeour and I’m presently the CEO at Drakenstein Hospice here in Paarl in the Western Cape. With the rollout of the ARVs, we were very lucky. We were one of the first hospices to be involved with the rollout of antiretrovirals. We now have four registered nurses, two social workers who all work fulltime and we have 250 patients at the moment. And quite a lot of those are HIV positive, we have over 100 in our stats this week and we have over 55 on antiretrovirals. Palliative care used to be considered as the opposite of curative care. That was when people have thought that palliative care is when patients aren’t getting better or there’s nothing you can do for them. But palliative care is really the act of symptom-management and the holistic care of patients. So we have the physical care and we also have the two social workers, which can help with the social aspects which will include things like grants and poverty, unemployment and then the psychological aspect, both our social worker frame is also a pastoral therapist. So that is really quite an important part of what we do.
Support Group
Jason Wessenaar: Sister Gladys and the group, do you think ARVs have changed the role of the hospice?
Gladys Nduna (Lizo Nabanda Hospice, Khayelitsha): i-Hospice itshintshe kakhulu because zingekabikho ii-ARVs, abantu babesifa kakhulu. Zikhona ii-ARVs abantu bababhetele baphile. {isiXhosa} [The hospice has changed a lot of things because when there were no ARVs people were dying a lot. Since there are ARVs people get better and healthier.]
Lihle Dlamini: I know of a number of people who had been admitted to hospices especially when they start ARVs. Some of them had immune reconstitution syndrome. They were very sick. At the hospice they are able to monitor how they take their ARVs and then they got better, then they got out.
Ricardo Moses: Ek het niks teen ’n Hospice nie maar in die geval waar, soos ek persoonlik voel; my vrou was ook in ’n Hospice gesit deur die feit sy’s te swak ons kan nie vir haar help. Maar van my kant voel dit, dis amper so, jy verstoot as, jy wat daai persoon en jy gooi daai persoon in ’n vulis blik en laat hom daar lê as hom hom in ’n Hospice gaan neer sit {Afrikaans} [I have nothing against hospices. We also wanted to put my wife in a hospice because she was too weak and we couldn’t look after her. It’s almost as if you are rejecting that person. It feels like you are throwing them away if you put them in a hospice.]
Seipati Ngobeni: Ok, this is my aunt, by the way, looking good hey? As Sister Gladys has said, this was her personal patient. Before her figure; she looked very ill, you wouldn’t recognise her, now she looks like a model. Basically she’s still on ARVs, there’s a carer that comes in and out and she still takes her ARVs from the hospice. She’s pretty much fond of the hospice crew. I think they’ve done good where she is based.
Ricardo Moses: The reason why I’m against hospices is because you have to take into consideration the feelings of that patient as well. In my wife’s case, this is somebody I care for and I love this person. So, on the one hand she will feel that I don’t care anymore because I send her to other people to go and take care of her. And at the end of the day, I decided to look after her by myself. And I know it’s very hard for me living with HIV and my wife. Her CD4 cell count was 19, her weight was 28. I had five kids to take care of and a baby who was two years at that time. I did take good care of her and there’s good results.
Seipati Ngobeni: [My opinion still stands, the hospice has helped her. When she arrived there, she found common grounds and clicked with other people. When she was at home, people felt pity for her. Shame you’re sick, drink Disprin, aspirin, Eno, all kinds of bottles, muti this and muti that, candles and prophets and all of that, all kinds of things. People come with their own medication sometimes. You wouldn’t monitor everyone who comes in and out. My point is the hospice has helped her.
Jason Wessenaar: Re bua hape ka palliative care ha re kgutla mabenkeleng. {Sesotho}[We’ll talk more about palliative care after the break] Stay tuned.
Jason Wessenaar: Re boetse reya le amohela hape mona ho Siyayinqoba Beat It support group. {Sesotho}[Welcome back to Siyayinqoba Beat It support group] – the programme for everyone infected and affected by HIV. To get a better understanding of palliative care, the Siyayinqoba team visited Sister Gladys at Lizo Nobanda Hospice in Khayelitsha. Let’s check it out.
Palliative Care at Lizo Nobanda
Khayelitsha, Western Cape
Sister Gladys Nduna: Apha kuse-Harare, e-Lizo Nobanda Hospice. Siqala uvula apha on the 2nd of December 2003. Singenisa abantu aba-HIV bakhona ke nabane-TB, nabane-Cancer, mandithi zonke izigulo. {isiXhosa} [This is Lizo Nobanda Hospice. We opened on the 2nd of December 2003. We have HIV positive patients here, but we also have TB, cancer and all types of other illnesses.]
Patient 1: Ndaqala ukugula ndinesisu, ndahambisa andayeka, ndaqaqanjelwa ngumzimba wonke. {isiXhosa} [When I started getting ill, I had diarrhoea and my whole body was sore.]
Sister Gladys Nduna: Apha into ebhetele kwi-home based care, ndifumanisa uba soloko ugqirha ekhona. Indawo yookuqala amanesi soloko enika ugqirha lonke ixesha i-report. Xa kukho into ethi crop up sawumnfownela ugqirha afike azofika azojonga i-patients. Kufamaniseke nezinye izigulo ebezifihlakele ngaphandle kwe-HIV. {isiXhosa} [The advantage of the hospice over home-based care is that when the doctor comes, he gets thorough reports from the nurses. And if anything crops up, we can call the doctor to see the patients. When HIV positive patients are examined by the doctor, he picks up on other opportunistic infections.]
Patient 1: u-Doctor Peter wandixelela uba ndi-HIV, ndine-TB meningitis. {isiXhosa} [Dr Peter told me I have HIV and TB meningitis.]
Sister Gladys Nduna: Kukho ke iipilisi ekuthiwa zii-ARVs apha esizisebenzisayo, zezi kuthiwa ke zii-drugs. Ezi pilisi ezi zilunge ngolona hlobo, umntu ozisebenzisayo akafunekanga asebenzise neyiphi na into, asebenzise zona qha. Abantu aba-HIV abanye babanezilonda ezilapha emzimbheni ingakumbi apha ezintsuleni. Umntu xa ene-bed sores, umntu xa egula kufuneka angalali ngecala elinye, kufuneka amane eguqulwa. Aphinde kuthathwe amanzi anesepha avaswe, arajwe noba kunge-vaseline ukwenzela angabina-bed sores. Xa ethe wanazo ii-bed sores ezi siyamvasa sogqiba simdrese, sikline isilonda sakhe kakuhle, simane simguqula. Side sibene-chart esiyibekayo entla kwebhedi yakho yokuba uba uguqulwe ngo-10 funeka aphinde aguqulwe ngo-12. etshintshwa ke i-dressing ngalo lonke ixesha. Abantu aba-HIV batya ukutya okune-veg ongumgaqo oko ngoba kaloku i-veg iyancedisa ekubhusteni imizimbha yabo. Batya ukutya okunenyama and batya ukutya oku-fresh ngalo lonke ixesha. Umntu xa engakwazi ukutya, siyazama ukuba simtyise ukutya oku-soft njenge papa ngenge-milkshake ukwenzel’ba abenento esiswini. {isiXhosa} [We use medication called ARVs. This medication is so effective that a patient taking them does not need any other medication. Sometimes, people with HIV get bed sores on their bodies, especially around the buttocks. When a patient has bed sores they mustn’t sleep on their side. They need to be regularly turned and washed with soap and water. They must be rubbed and massaged with Vaseline, to avoid developing bed sores. When a patient has bed sores, we wash and dress them. We wash the sores properly, dress them and then we turn the patient over. We have charts that we put next to their beds showing that if a patient was turned at 10, they will be turned again at 12. The patient will also be changed, dressed and turned regularly. HIV positive people need to eat a lot of vegetables. It’s important because vegetables help boost their immune systems. They need to eat meat and fresh food at all times. When a patient is unable to eat, we serve them soft foods, such as porridge and milkshakes, to make sure that there is something in their stomach.]
Three weeks later
Patient 1: Ndiyavuya kakhulu ngoba lide ithuba ndilapha. Ngelaxesha ndandikhululwa ndandinovuyo kakhulu ngoba ndandiziva ukuthi ndiphilile. Iipilisi endizityayo yi-d4T, yi-3TC ne-efivarenz eziyi-two. {isiXhosa} [I’m very happy that I’m going home because I have been here for a while. I was very happy to be discharged because I’m feeling healthy. The ARVs I’m taking are d4T, 3TC and two efivarenz.]
Support group
Jason Wessenaar: Is home care better than the hospice, if you’re comparing the two? What should people opt for?
Seipati Ngobeni: I really wouldn’t say that home care is better because I had one incident when my aunt was very sick, so as time went by we realised that we couldn’t take care of her. She had diarrhoea, that’s the point when we couldn’t cope. We realised we should take her to Jooste Hospital. They took her to Lizo Nobanda Hospice in Khayelitsha. They were very good with her. They gave her treatment, they put her on ARVs and now she’s fine. She also has a child who is HIV positive. They are growing up well and getting big and strong. Without the help of the hospice, we wouldn’t have survived.
Lihle Dlamini: Seipati, I agree with what you’re saying. If a person is sick at home, the person taking care of her has other things to do like going to work. There isn’t enough time to take care of the person. We don’t have training to take care of them. Because palliative care does not only involve the physical being of a person but it also has to do with the psychological and spiritual being of that person.
Seipati Ngobeni: She feels like she is a burden to you although you want to comfort her. It becomes a problem for her because of her embarrassment and feeling like a burden. Although you try by all means to be there. It’s just never enough. That’s when you give up hope and say let me take her to someone who’s professional enough to do this. It’s only then that you can say I have tried my best to do this. Those are some of the challenges I faced.
Jason Wessenaar: After the break we are joined by Dr Natalya, an expert in palliative care. Stay with us.
Jason Wessenaar: Welcome back to the Beat It! support group. We welcome Dr Natalya, an expert on palliative care. Welcome doctor. Doctor Natalya, we have two experiences where Seipati’s aunt went to a hospice and got better, she was on ARVs. We also have Ricardo’s experience where he nursed his wife until she got better; she obviously went on to ARVs. But I think the question is what should we advocate for, should we advocate for more home-based care or should we advocate for people to be taken care of in a hospice? Which is better and why?
Dr Natalya Dinat (Chris Hani Baragwanath Hospital): I don’t think it’s a matter of where the care is offered. Whether the care is offered in the home or a hospice, it actually depends. Many people don’t have a home to speak of, you know they’re sharing beds, there are four of them in a bed, it’s not really an issue of where the care is, it’s the issue of the quality of care. And why in many people’s experience the hospice has been very good, is because they have provided professional health care and that is the issue. Home-based care has sometimes been really seen as a cheap cop out, you know. Let’s do care for the people outside the healthcare system by non-professionals with no drugs and for me that is not adequate. People with HIV, just as anybody else, deserve good medical care. Palliative care implies that there are drugs. And often in home-based care, they work very, very hard, they are very compassionate, they care a lot but without the wisdom of the drugs what can they do? So we need home-based carers to be supported by professional nurses, we need them to be supported by professional social workers, physiotherapist, bi-pastoral care. At the end of the day we are providing people with holistic care.
Jason Wessenaar: What are some of the challenges you faced in providing palliative care?
Dr Natalya Dinat: Access to drugs, the stock outs at the clinic. I know that on the essential drug list, there’s supposed to be amitriptyline; you know people with AIDS get peripheral neuropathy; it’s very painful. Their hands and their feet, it’s like when they are walking, it’s burning. Why must people suffer with pain? Why? There’s no reason, because you’re HIV, why must you have pain? And that can be dealt with medication called Amitriptyline. There’s another medication called carbamazepine that can help. Now we need that in the clinics and one of our biggest challenges, other than that is, we go to the clinic, they’re not there. Where’s the morphine, it’s not there. Where’s the codeine to stop the diarrhoea and stop people from coughing blood, it’s not there. So our biggest challenge is making sure that these drugs are in the government hospitals and in the government clinics.
Ricardo Moses: There are some stages where people are money out of the hospices because I know of a hospice where people have to leave their All-Pay card. That R600 or R780 that they get per month, it will be divided weekly and how they get that money from the patients. So for me this is also a money making business.
Dr Natalya Dinat: There are hospices like that. There’s an association, an organisation called The Hospice Palliative Association of South Africa but there are also many, many places that can just open up and call themselves a hospice that are not necessarily registered with the association. So this is one of the problems when you have a response that’s unregulated and there are very unscrupulous people, you are right, who really do take advantage. Obviously yours is a very loving and you’ve got a very good responsibility to your wife which shows but I still believe that doesn’t mean you must carry that burden by yourself. Looking after somebody who is sick is not just a responsibility of the household, I think that as a country – we all have to carry that responsibility. The issue is not where she should be, the issue is the quality of her care. Your wife deserves free medication along with the antiretrovirals, she deserves professional care and you deserve support to help her. It must have been very difficult to do all the care.
Jason Wessenaar: Siyabulela Sister Gladys, Dr Natalya, Seipati, nani babukeli emakhaya. {isiXhosa} [Thanks to Sister Gladys, Dr Natalya, Seipati, the support group and the viewers at home.] Today we have learned that we must never give up on someone who’s ill. We can save a life by giving proper care and support and antiretrovirals as soon as possible. If a hospice in your area is full and they cannot take in your loved one, find out if they can offer palliative care at home and medication if needed. Make sure that the bed sores, rashes and diarrhoea are treated but most importantly, treat pain and symptoms. Finally, ask your clinic to refer you to an antiretroviral treatment centre in your district. With ARVs even a person who has AIDS can get better but proper care is needed. We hope that you have enjoyed the show and are feeling the Siyayinqoba spirit, that together we can beat it. Join us again next week in the Siyayinqoba Beat It! support group. Till then stay healthy and remember we can beat HIV.
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