If a loved one has been diagnosed with an incurable illness, you may wonder when is it time to consider palliative care? When should someone be offered palliative care? How can it help them, when there isn’t a cure for their illness anyway?
Those are all valid questions. Lots of people with a terminal condition, and their families, will be asking themselves the same things.
However, palliative care can have many benefits for people with an incurable illness, as well as their families and friends.
Palliative care looks after every part of the person – this is called holistic care. It’s not just about making sure that someone isn’t in pain. It aims to ensure that your loved one will have a good quality of life, even with a terminal diagnosis.
Palliative care focuses on:
What palliative care will look like for your loved one depends on their condition and their specific needs. They will have a personalised palliative care plan that details their personal care needs, medication, plans and wishes for the future, and much more.
Palliative care might be provided by a wide range of people, not just doctors and nurses in a hospital. A GP and district nurses may be involved, as well as home carers to help on a day-to-day basis. A home care agency can help you arrange this.
Many people also receive support from occupational therapists, who may help with arranging modifications to the home or suggesting ways to make daily activities easier. Some people also benefit from counselling or involvement from a spiritual leader.
Being offered palliative care does not necessarily mean that your loved one will die very soon. For some people, palliative care can continue for a long time, even while they are still receiving treatment for their condition.
There are five stages of palliative care, beginning from the moment your loved one receives their diagnosis:
Anyone with an incurable illness or condition may receive palliative care. Many people who are receiving palliative care have illnesses such as:
Palliative care can manage a range of symptoms. Even if there is no cure for your loved one’s illness, this doesn’t mean that they need to struggle with discomfort. Not all symptoms of an incurable illness can be completely taken away, but there are often options to help.
Your loved one’s palliative care plan will be personalised to their needs. If they develop new symptoms that need management, the palliative care team will be able to offer advice. Your loved one’s medical team and home carers will be able to offer a range of supports to ensure that they are as comfortable as possible.
The most obvious support people think of when they consider palliative care is pain management. If your loved one’s pain is mild, they may be able to use over-the-counter pain medication such as paracetamol or ibuprofen. Alternatively, if their pain is more severe, the palliative care team or GP may prescribe opiate pain medication, such as codeine (for moderate pain) or morphine (for more severe pain).
Some people experience side effects from their painkillers, including nausea, constipation and drowsiness. Your loved one’s palliative care team can advise about the best ways to avoid side effects – this may involve taking medication to protect the stomach, or making diet changes.
Pain medication may be given in several ways, including pills, liquid medication, patches, or with a syringe driver, which can be inserted in the arm or abdomen. Your loved one’s palliative care team will try and find the least invasive way to provide them with effective pain medication.
Home care workers can support your loved one with pain management, whether this involves simple reminders about taking medication or helping to administer it.
Lots of people with a serious or incurable illness experience nausea or sickness. Sometimes this can be a side effect of medication, or sometimes it can be as a result of the illness itself.
The palliative care team or your loved one’s GP may be able to prescribe anti-sickness medication (sometimes called anti-emetics).
Your loved one’s home carer can help by regularly offering small meals or snacks, as well as food that helps with sickness, such as ginger.
As well as sickness and nausea, many people have other problems with eating when they are very ill. They may struggle to chew or swallow, have very little appetite, or find that food no longer tastes the same.
Your relative’s home carer can help by offering food that is easier to eat. If your loved one struggles to chew, foods such as soup or soft bread may be easier to process. If they are worried about swallowing and choking, having a carer with them at mealtimes may reassure them.
When preparing your loved one’s personalised care plan, it may help to consider some of their favourite foods. If their appetite is small, offering some preferred foods may encourage them to eat.
If your loved one hasn’t been eating as much because they are too tired or sick to prepare food, a home carer can ensure that they are eating regularly.
Many people also experience constipation or diarrhoea, which can be very distressing. Your loved one’s palliative care team may be able to offer medication to help.
Some medical conditions may cause breathlessness. Panic and anxiety can also make breathing problems worse.
If your loved one feels breathless at particular times, such as when climbing the stairs or showering, an occupational therapist may be able to help adapt their home. A stair lift or shower chair might help at those times.
The palliative care team may also be able to suggest medication or supplementary oxygen, if they feel this would help your loved one.
Many people receiving palliative care feel very tired. This can be for a few reasons:
Your loved one’s palliative care team may be able to help if they are so tired that they are finding it hard to do the things that interest them. This may involve changing their medication or dosage, or encouraging some new treatment options.
For people who are experiencing extreme fatigue, a home carer can be very useful. They can help your loved one by preparing meals, supporting them to bathe or shower, and offering assistance with housework.
They can also support your loved one with gentle exercise and preparing a good sleep routine, including taking pain medication regularly.
Finding out that an illness is incurable may be very hard to take in. Even if it’s not a surprise, your loved one may feel a lot of grief, anxiety or anger upon finding out that they will not recover from their illness.
Lots of people with a terminal diagnosis benefit from counselling. This may be in the form of therapy with a counsellor or psychologist, or discussions with a religious or spiritual leader.
Other people can help your loved one here as well.
Their GP or palliative care team may be able to prescribe anti-anxiety medication if needed.
You and other friends and family can be there to listen when they need to talk. You may find that your loved one seems angry, and this might be hard to cope with. Remember to take time for yourself, and encourage other friends and family to help out where possible.
If your loved one is worried about being alone at night, you could employ a care agency to send a carer to stay with them.
Your GP, specialist or another healthcare professional may give your loved one a referral for palliative care. They may suggest it when it becomes clear that their condition is not curable.
A doctor will often suggest palliative care to make sure that your loved one has all the necessary support in place to live well, even if their illness is not curable. This means that they’re not just concerned about symptom and pain management, but also help around the home, personal care needs and emotional support.
Palliative care does not always mean that your loved one will stop all of their other treatments. Some people may continue with treatments such as chemotherapy, radiotherapy or medication. They may also continue seeing their specialist healthcare team as well as the palliative care team.
Hospice care is sometimes used as another term for palliative care – support that is given to someone once they have been diagnosed with an incurable illness. Hospice care can happen in someone’s home or in a hospice building.
Your loved one may visit a hospice for specific therapies, symptom management or respite care.
Most people with an incurable illness will be offered palliative care. Depending on your loved one’s needs, they may need support from doctors, nurses, home carers and others.
Palliative care also includes end of life care, but receiving palliative care doesn’t mean that your loved one’s death is imminent. For many people, palliative care begins when they have been diagnosed with an terminal condition, or when their medical team has determined that there is no cure for their illness.
Palliative care also offers support to the family and friends of people with a terminal illness. This may be practical support, for example a home care agency helping their loved one, so that they don’t have to provide personal care. It may also involve emotional support, such as counselling before and after their loved one has died.
Palliative care is offered to people with an incurable illness or condition. It’s holistic, which means that it supports someone as a whole. People receiving palliative care may have counselling or therapies to help them cope emotionally. They may also receive support from occupational therapists or home carers so that they can live well in their own home, in addition to symptom management.
A doctor or healthcare professional may recommend palliative care when your loved one has been diagnosed with an incurable illness. It doesn’t mean that your loved one is going to die very soon, but having palliative care in place means that you can ensure your loved one is having a good quality of life for the time they have left.
Palliative care is recommended for patients who have an incurable condition. This might include advanced cancer, organ failure, terminal conditions such as motor neurone disease or Parkinson’s, or serious heart and lung conditions. Palliative care may be used by patients of any age – children and young people with serious conditions or diagnoses may need it, as well as older people.
The five stages of palliative care begin from the time your loved one receives a diagnosis. They are: initial assessment and planning, emotional preparation, early stage care, late stage or end-of-life care, and bereavement support. Your loved one’s home care agency can help you navigate all of these stages.
Get in touch with Tiggo Care today to see how we can help you or your loved one.
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