Palliative care
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Palliative care teams will:

  • Advise on control of treatment related symptoms.
  • Palliate alongside active treatment in opportunistic infection and malignancy.
  • Provide support around social needs.
  • Help HIV teams to make appropriate treatment decisions.
  • Help with psychological support.
  • Be involved in terminal care (including supporting carers into bereavement).

Symptom control

Individuals with HIV can experience symptoms even in early infection but in advanced disease they experience a similar burden of symptoms as their fellow-sufferers with advanced malignancy. Anorexia, fatigue, pain, fever and cough are amongst the common symptoms in far advanced disease. Symptoms can arise from the direct effect of the HIV viraemia, as a result of drug therapy, opportunistic diseases, immune reconstitution or unrelated causes.

Pain is experienced by 50 –88% of individuals with advanced disease. Pain associated with infections (e.g. herpes simplex infection) is common even in early disease. Headache, arthralgia and myalgia are more common than in the non-infected population. Painful peripheral neuropathy occurs in up to 20% individuals receiving HIV medication although it may be caused by drugs or HIV or both. It presents as a painful or numb feeling in both feet and sometimes the hands. Some individuals find benefit from non-drug therapies such as acupuncture or massage. Pain control may not be optimal in general HIV clinics and reasons given for this include the absence of advice about pain. The potential of antiretroviral medications for interactions must be considered when prescribing analgesics.

Nausea and vomiting occur commonly as a consequence of disease or medication including septrin and protease inhibitors which may have to be discontinued as a consequence. Tolerance to this adverse drug effect does develop in some individuals but antiemetic medication is often required. Diarrhoea is another common side effect of antiretroviral treatment as well as being a consequence of the underlying HIV infection, and occurs with 32% of individuals on protease inhibitors.

Case Study

Charity is a 30 year-old woman from Zimbabwe who has been HIV-positive for ten years and taking antiretroviral therapy for the last four years. She was referred to the palliative care clinic with pain in her feet. She has felt tingling and sharp pains with numbness in both feet for two years. More recently the pain has increased and she has difficulty sleeping because of it. She has to wear “sensible” shoes and walking makes the pain worse. She has tried “over the counter” painkillers with little relief.

After assessment and investigations she is told that she has peripheral neuropathy. The cause may be her HIV or treatment or both. She has been stable on her current regime and both Charity and her HIV doctor are reluctant to change drugs. She is offered a range of treatment including complementary therapy, topical treatment and drug therapy. She starts on medication to treat the symptoms and finds that the tingling and sharp pains reduce. She still has numbness and some pins and needles but she is content because she can sleep and wear shoes with heels.

Palliation alongside active treatment for opportunistic infections and malignancies

The HIV and palliative care teams complement each other in providing active and supportive care to individuals who may develop illness as a consequence of their immune suppression. This is outside the usual remit of palliative care teams who would normally restrict their involvement to those individuals with progressive, incurable disease. In practice, however, it makes sense to have teams placing priority on both aggressive treatment and quality of life issues.

Case Study

John is 40 and has been infected with HIV for fifteen years. He has been taking combination antiretroviral therapy for the last twelve years. He presented with pain and bleeding from his anus four months ago which was diagnosed as anal cancer. He was devastated by the news but was told that his scans showed localised disease only and that with treatment he could be cured. He agreed to have six weeks of chemotherapy and radiotherapy during which time he remained in hospital. He experienced increasing pain in his anus and rectum requiring regular morphine. He had diarrhoea and superficial painful ulcers of the skin at the site of his radiotherapy. During his treatment he felt out of control. He decided that he had to tell his family (including his rather frail elderly mother) about the cancer diagnosis although not all of them know about his HIV status.

The Palliative Care team were involved from his diagnosis of cancer to help him with information and support him emotionally come to terms with his new diagnosis. They also helped him to think about who he might want to share the information with and how. They saw him regularly during his treatment to address his symptoms and continue to provide psychological support. At his request they spoke with his mother to explain to her about his cancer diagnosis and the good prognosis. After his treatment finished his diarrhoea and pain slowly improved and the palliative care team continued to see John as an out patient to supervise the reduction in his analgesics.

Treatment decisions

There are some infections and malignancies that occur in HIV disease where it is not clear whether aggressive treatment is the right option. The views of the patient and their carers, the HIV team and the palliative care team may all help to make a balanced decision about what is appropriate treatment. There may come a point where the patient decides that although further life-prolonging treatment is possible they would rather pursue quality than quantity of life. These decisions require much discussion and appropriate information.

Terminal care

Palliative care teams are accustomed to providing holistic terminal care to patients with advanced progressive diseases of all types including HIV. Alongside symptom control, they will explore emotional and spiritual needs, try to address financial and practical issues including where the individual wishes to die and give support to carers and relatives. The patient’s need for confidentiality must be respected although this sometimes leads to difficulties communicating with other health care professionals outside the immediate team and with the family. Funding for HIV community support and HIV specific inpatient hospice beds has reduced over the last decade which has made it more important for general palliative care teams to extend their services to the HIV population.

Social support

 

Case Study

Robert acquired HIV through intravenous drugs six years ago. He also has Hep C infection and despite treatment he remains Hep C positive. Over the last two years his liver function has been deteriorating and he has had repeated admissions with complications of his failing liver. He has found it impossible to tolerate taking antiretrovirals and he now has advanced immunosuppression with a CD4 count of 20. He has been seen by a liver transplant team but because he remains Hep C positive and has such poor immune function he has not been offered a liver transplant.

Robert is admitted again with jaundice and a distended abdomen because of ascites – a collection of fluid within the abdominal cavity. The palliative care team are asked to see him to help with pain and nausea. As they get to know him he tells them that he knows is very ill. He starts to talk about all the admissions he has had and how his quality of life has been poor for the past two years.

One night Robert suffers a large gastrointestinal bleed. He has a central line put in and an endoscopy. The bleeding settles but it is clear that he has terminal liver failure and time is limited. Robert tells the nurses and the palliative care team that he has had enough and wants the treatment stopped. His best friend comes in and agrees that Robert has told her that he would not want his life prolonged if he was terminally ill. The palliative care team represent Robert's view to the rest of the health care team looking after him and it is agreed that Robert is entitled to stop his treatment. He understands what he is saying and is mentally competent. He calls his family who he had been keeping at arms length and tells them what is happening. His family are understandably distraught and need a lot of explanation and support.

Robert has his intravenous lines taken out and is able to go to his flat for the afternoon to arrange some paperwork. He realises that he will not feel comfortable at home and does not want to be a burden to his friend or his family. The palliative care team discuss the options, including transfer to a hospice, but Robert decides that he would rather stay in the hospital ward where he is well known and where he is familiar with all the nurses. He has his favourite photos brought in and his music and spends some days with his friends and family in a more cheerful mood. He dies on the ward and the hospital palliative care team are able to support him and his carers up to the end.