In this study session you will learn what palliative care means; how to obtain information, grade pain and provide pain relief; how to advise patients on home-based methods for controlling pain; and on home-based and end-of-life care for people living with HIV (PLHIV). You will also learn how to provide psychosocial and nutritional support. In the future you may be involved in providing community-based palliative care services for PLHIV.
Palliative care is care given to chronically ill people to improve their quality of life and that of their families. It involves prevention and relief of suffering, pain and other physical problems, and attention to psychosocial and spiritual issues. Palliative care is also provided for terminally ill patients with conditions such as cancer, heart disease and stroke. The four components of palliative care in Ethiopia which you will learn about in this session are symptom management, including pain management; psychosocial and spiritual support; home-based care, and end-of-life care.
When you have studied this session, you should be able to:
30.1 Define and use correctly all of the key words printed in bold. (SAQ 30.1)
30.2 Explain what palliative care means, its importance, and its four components. (SAQ 30.1)
30.3 Describe how to provide pain management, with and without medication, and assess when to refer patients for further pain treatment. (SAQs 30.2 and 30.3)
30.4 Describe how to prevent and manage the common symptoms of HIV/AIDS using home-based care. (SAQ 30.3)
30.5 Describe how to provide psychosocial and spiritual care at home for chronically ill people with HIV/AIDS. (SAQ 30.3)
30.6 Describe how to provide preventative home-based care services for bedridden patients with AIDS. (SAQ 30.4)
30.7 Describe how to provide end-of-life care, especially bereavement care. (SAQ 30.5)
Note that palliative care does not only mean the terminal care given to people dying from an incurable chronic illness.
Palliative care aims to improve the quality of life for chronically ill patients and their families, by preventing and giving relief for pain and other physical, psychosocial and spiritual problems. It is also an essential part of comprehensive HIV care and support services. Palliative care is provided for patients from the time the chronic disease is diagnosed until the end of life. It regards dying as a normal process, and affirms life. It also offers support to help the patient and family cope during the illness and in the bereavement period, the time of grief due to the loss of a loved one through death.
Palliative care is not only useful for patients with HIV/AIDS, but also for people with chronic communicable and non-communicable diseases who require long-term care at home. It is also important for people with a curable illness with symptoms that last a long period of time (e.g. many months) before they are cured.
Cancer, diabetes, heart disease and chronic lung disease are described in the Non-Communicable Diseases, Emergency Care and Mental Health Module.
Can you think of a curable chronic communicable disease whose patients may benefit from palliative care?
Treatment for tuberculosis may involve long-term care at home.
The palliative care needs of patients increase with time, particularly in a situation where the underlying disease is getting worse rather than better. In areas where patients present late for medical care, the need for palliative care is high. With good treatment and support, palliative care can help many patients live comfortably with a chronic disease for many years. For those who have advanced disease in a terminal phase, palliative care focuses on promoting quality of life by providing good symptom management. This can help patients continue to function and enjoy life at home for as long as possible.
What are the four major components of palliative care in Ethiopia?
They are: symptom management, including pain management, psychosocial and spiritual support, home-based care and end-of-life care.
Below we will discuss each of the four components of palliative care for PLHIV in detail. Remember that these components are inter-related.
In palliative care for PLHIV, the aim is to manage symptoms arising from:
Pain is one of the most common symptoms in HIV/AIDS patients with advancing disease. If your patients complain of pain, they should be assessed carefully (as described below); severe cases should receive urgent referral for specialist consultation and treatment.
First, ask the patient ‘Where is the pain?’ and ‘What makes it better or worse?’ ‘What type of pain is it, and what medication (if any) is being taken for the pain?’ Note that pain could result from severe opportunistic infections, and this may need urgent referral to a health centre or hospital.
Secondly, determine the type of pain. Is it a familiar pain (such as bone or mouth pain), or a special and unusual pain (such as shooting nerve pain or muscle spasms)?
Thirdly, check if there is a psychological or spiritual component to the pain. Does it feel worse when the patient is depressed or anxious? Does it feel better when the person is doing something interesting that takes their attention away from the pain?
Fourthly, grade the pain from 0 to 5 with the faces chart (especially when working with children), as illustrated in Figure 30.1, or using your hand with different numbers of fingers raised (no fingers being no pain, and five fingers the worst possible pain).
Manage the pain with paracetamol if it is at grade 1 or grade 2. Paracetamol is the anti-pain medication that you are allowed to give at community level. Refer patients with pain at grades 3, 4 and 5 to the nearest health facility.
Why do you think you should refer patients with grade 3 pain or above?
You should refer such patients quickly because the pain may be indicating severe disease, which needs better diagnosis and management with anti-pain drugs that can only be given by a doctor.
Pain can also be managed without the use of modern medication. Indeed, spiritual and emotional support and counselling should always accompany pain medication. This is because pain can be harder to bear when there is guilt, fear of dying, loneliness, anxiety or depression. Likewise, answering questions and providing information on HIV/AIDS health-related issues is important to relieve fear and anxiety, which in turn makes pain more bearable. The other ways to relieve pain are deep breathing and relaxation techniques (unless the patient has severe mental health problems); or distracting the patient’s attention using music, conversation, or imagining a calm scene.
In your catchment area, how do people treat pain without using modern medication? Give two examples of local pain treatments which are not effective in relieving chronic pain.
Local pain remedies vary in different parts of the country, but you may have thought of tying the painful area with a scarf or other cloth to treat headache or back pain; or burning the skin of the painful area using very hot wooden or metal sticks, sometimes to treat headaches, but mainly for pains in the hands and feet. These treatments are not effective and can make the pain worse. Burning the skin creates a wound that could become infected.
Traditional medication for pain relief may interfere with ARV drugs. Refer patients to the nearest health centre for advice on this topic.
Study Session 22 has already described how to manage the adverse side-effects of drugs used to treat HIV disease. In this section we summarise the advice you should give to help someone manage the symptoms of advanced HIV disease.
Note that persistent vomiting needs medical treatment, and you must refer the patient urgently.
Advise the sick person to:
Advise the sick person to:
Refer patients with diarrhoea to a health centre if:
Psychosocial support is a fundamental part of palliative care, and includes a range of interventions that enable the person who needs palliative care, and their caregivers and families, to cope with the overwhelming feelings that result from their experiences with long-term disease and the threat of death. Providing psychosocial support may include supporting their self-esteem (self-respect or confidence in oneself), helping them to adapt to the illness and its consequences, and helping them to improve their communication with each other and with you, and their social functioning and their relationships.
Spiritual support involves taking into account not only the patient’s religious or faith beliefs and practices, but also their understanding of the purpose and meaning of life.
PLHIV often feel unhappy, and even depressed at times. They will be calmer if they accept the illness as much as they are able to, and realise that it is possible to live a healthy life and be productive if they take their medication correctly. You can help by introducing them to a nearby PLHIV association, or a community-based organisation which provides support to PLHIV (if available).
Psychosocial support for PLHIV should also address practical aspects of care, such as finances, housing, and assistance with daily living. Regarding spiritual support, you may want to discuss spiritual beliefs, cultural issues and personal values. The following tips will help you to provide spiritual support to patients:
Caregivers in the family frequently feel anxious or depressed, or have problems with sleeping, as the person they care for comes closer to the end of life. You can encourage caregivers to share their feelings with you by asking questions about their perception of the patient’s illness and its impact on their life. Mild psychological distress (mental suffering caused by grief, anxiety or unhappiness) is usually relieved by emotional support from health workers who have effective communication skills. By explaining the patient’s physical and psychological symptoms, and challenging false beliefs about death and dying, you can bring a reasonable hope to caregivers and to the patient, and reduce the sense of isolation they may feel. Empower the family to provide care by explaining that as human beings, we know how to care for each other. Reassure them that they already have much of the capacity needed, and that you can give them more information and support their skills.
Home-based care is the care of people affected by HIV/AIDS, cancer, and other chronic diseases, that is based in the patient’s home. In the case of HIV/ AIDS, the need for home-based care largely corresponds to late HIV disease (stage 3) or AIDS (stage 4). Home-based care involves the community (depending on available resources) and healthcare workers in supporting the care provided by the family at home. Patients receiving home-based care may have been treated earlier in hospital, and may continue to receive some care from the health facility nearest to their home. Some of the preventative home-based care services for PLHIV are described below.
For patients able to self-care, advise them that twice a day they should use a soft toothbrush (or a piece of soft stick or clean cloth if a toothbrush cannot be obtained; see Figure 30.2) to gently brush their teeth, tongue, palate and gums to remove debris. Use toothpaste if affordable and available. Rinse the mouth with diluted salt water after eating and at bedtime (usually three to four times daily). For patients who cannot do this for themselves, tell the caregivers to provide oral care to the patient two to three times every day, as described above.
A bedridden patient is one who is too sick to get out of bed at all, or only for short periods.
To prevent bedsores, you should do the following:
You or the patient’s caregiver need to know how to move a bedridden patient if you are on your own. If the patient is unconscious or unable to cooperate, it is better to have two people to help with moving the patient, but this is not always possible. When transferring the patient from the bed to a chair, use the procedures shown in Figure 30.4. This will help to protect you and the patient from strain and injury.
Remember to provide privacy for the patient during bathing, which is necessary every day to give hygienic care of the body and skin. Show the caregivers how to follow these procedures:
Figures 30.5 to 30.8 illustrate some of the ways you and the caregivers can help a patient to exercise their joints and muscles to prevent stiffness and contraction due to pain, or lying still for a long time.
The end of life is the terminal phase in the advanced stages of disease when the patient is expected to die in a matter of days. End-of-life care aims to recognise that life and death are normal. It neither hastens nor postpones death, it achieves the best quality of life in the time remaining, and provides good control of pain and other symptoms. It helps the dying patient and loved ones to adjust to the many losses they face, and ensures a dignified death with minimal distress. It also provides support and help for the family to cope with bereavement.
A major challenge you will face is to decide when the patient has reached the terminal phase of the illness and needs end-of-life care. A terminal illness is one for which no cure is available, and from which the patient is expected to die relatively soon.
Patients with terminal illness are usually treated with palliative care at home rather than in hospital.
Once a patient has been declared terminally ill, management of some conditions will change, and some medications may stop altogether. You may need to consult your supervisor or a nurse to help you decide when an HIV/AIDS patient is terminally ill.
Encourage communication within the family. Discuss worrying issues and offer practical support in resolving concerns such as making a will, custody of children, family support, future school fees, old quarrels, or funeral costs.
Tell the patient that he/she is loved and will be remembered. Talk about death if the person wishes to, but keep in mind cultural taboos if you are not in a close relationship with the patient. Help the patient accept his/her own death. Ask him/her how they wish to die, for example with pastoral or religious leaders present, or with family only.
Make sure that what the patient wants is always respected.
Respond sensitively to the patient’s grief reaction to realising they are dying. This may include denial, disbelief, confusion, shock, sadness, anger, humiliation, despair, guilt, and finally acceptance. Make sure the patient gets help with feelings of guilt or regret. Keep communication open — if the dying person does not want to talk, ask ‘Would you like to talk now or later?’
Here are some points for you to bear in mind when you are caring for a person at the end of his/her life.
When a patient is very close to death, watch for these signs:
When the patient dies, you can confirm death by checking that:
Provide bereavement counselling for the patient before death (as described earlier) and for the family after death of their beloved. They may also feel denial, disbelief, confusion, shock, sadness, anger, humiliation, despair and guilt about the dead person and the care they received before death. Help the family accept the death of the loved one. Share the sorrow — encourage them to talk and share their good memories. Do not offer false comfort — offer simple expressions and take time to listen.
Remember to offer practical help. For example, try to see if friends or neighbours can help with cooking, cleaning, running errands, child care, etc. for a few days after the death. This can help in the midst of grieving. Ask the family if they can afford the funeral costs and future school fees, and help in finding a solution if possible.
Encourage patience — it can take a long time to recover from a major loss. Say that they will never stop missing their loved one, but the pain will ease and allow them to go on with life.
In Study Session 30, you have learned that:
Now that you have completed this study session, you can assess how well you have achieved its Learning Outcomes by answering the questions below. Write your answers in your Study Diary and discuss them with your Tutor at the next Study Support Meeting. You can check your answers with the Notes on the Self-Assessment Questions at the end of this Module.
Which of the following statements regarding palliative care for PLHIV is false? In each case, explain what is incorrect.
A Palliative care is only given to patients who are near to death.
B Palliative care is provided only to PLHIV because HIV/AIDS is not curable.
C Palliative care is an essential part of care for patients with cancers.
D Patients with chronic illnesses like diabetes or stroke may need palliative care.
E Palliative care includes prevention and relief of suffering, pain and other physical problems, as well as attention to psychosocial and spiritual issues.
C, D and E are true.
A is false. Palliative care is not terminal care (care given to dying patients only); it is the care provided to patients with a chronic illness, from the time the disease is diagnosed until the end of life. It regards dying as a normal process, and affirms life. This is well described in statement E, which is true.
B is false. Palliative care is also needed for patients with other non-curable chronic diseases like cancer, diabetes and strokes, as described in the true statements C and D.
Is the following statement true or false? Explain your reasoning.
‘Relieving pain is not a routine part of palliative care, since it is not treating the chronic disease that caused the pain.’
The statement is false. Even though the disease causing the pain is not curable, we have to manage pain properly. The reason for doing this is because pain makes patients suffer a lot, which in turn affects their quality of life. Treating pain is relieving patients from this suffering, and hence giving them a better quality of life. Pain management should be an integral part of managing non-curable chronic illnesses.
Read Case Study 30.1, and then answer the questions that follow it.
Ato Aytenfisu is a 45-year-old man living with HIV who started antiretroviral medication two weeks ago. During your home visit you find that he is feeling ill. He has had a mild headache and watery diarrhoea two to three times per day for the past four days. He looks very unhappy. He has no vomiting, fever, neck stiffness or other symptoms.
Which of the following is not part of the preventative home-based care you will give to bedridden patients with AIDS? Explain why it is not included.
A Frequent repositioning of a bedridden patient and skin care to prevent bed sores
B Providing oral care
C Providing hygienic care of the body
D Exercising the joints to prevent muscle stiffness and contraction
E Treating infection of the lungs.
E (treating infection of the lungs) is not part of preventative home-based care for bedridden patients. First, it is a treatment, not palliative care. Secondly, if the patient develops a lung infection, he/she has to be referred to a nearby health facility for specialist treatment as soon as possible. All the other statements (A to D) are part of preventative home-based care for bedridden patients.
Is the following statement true or false? Explain your reasoning.
‘Since terminally ill patients will die soon, it is a waste of a health worker’s time to provide them with end-of-life care.’
This statement is absolutely false, because end-of-life care is very important for patients with a terminal illness. Indeed, it helps us to recognise that life and death are normal events. It helps the dying patient and loved ones to adjust to the many losses they face, and tries to ensure that a dignified death occurs with minimal distress.